Nurses play a unique and critical role in palliative care, and it is noteworthy that nurses often encounter ethical dilemmas in this field.
This review aims to conduct a summarised synthesis of the latest research on the ethical considerations nurses faced in palliative care.
We conducted a rigorous systematic review of relevant existing studies published in high-quality English peer-reviewed journals from January 2017 to July 2023. We identified a total of 4492 articles (1029 in Web of Science, 1570 in PubMed and 1893 in Science Direct). Out of these, only 13 studies met the inclusion criteria.
Following the thematic analysis, the ethical considerations reported in these 13 studies were grouped into three main themes and four subthemes: ethical issues in communication (ethical issues in communication with patients, ethical issues in communication with families), ethical issues in decision-making (autonomy, dignity) and moral distress in palliative care.
This study elaborated on the ethical challenges faced by nurses in their communication with patients and families as well as decision-making and analysed the causes and effects of ethical distress, hoping to give a hand to ethical issues for nurses’ work in palliative care.
The aim of this study is to evaluate pain management adequacy based on the Pain Management Index (PMI), and its association with the Brief Pain Inventory (BPI) in advanced cancer inpatients to a palliative care unit.
This is a quantitative study concerning advanced cancer inpatients in a specialised palliative care unit between June 2021 and February 2022. The BPI was applied, and analgesia was observed on the first (D1), third (D3) and seventh (D7) day of hospitalisation. Adequate analgesia was considered when PMI≥0.
A total of 104 patients were evaluated on D1, 68 on D3 and 45 on D7, with a mean age of 53.6 years (SD±14.1), most of them female (65.4%), with the most frequent primary tumour site located in the gastrointestinal tract (22.1%). The observed analgesia was adequate (PMI≥0) in 52.9% of all patients on D1, 95.6% on D3 and 100% on D7 (p value=0.012). The number of patients with moderate to severe pain interference in general activities (p value 0.012), mood (p value 0.014), walking ability (p value 0.047), normal work (p value 0.038) and pleasure of living (p value 0.025) decreased during hospitalisation.
Pain is a prevalent and impacting symptom in patients undergoing palliative care. Thus, objective analgesic adequacy assessments in specialised services are required. These findings reinforce the importance of effective pain control and corroborate the importance of employing objective tools in evaluating medical services and improving quality of life of patients.
As workload increases, surgical care for patients with bone metastases is increasingly decentralised, with a shift in management away from primary bone tumour units to local centres. We must ensure that patients have similar outcomes regardless of where they receive their treatment. The aim was to develop and validate a set of quality outcome indicators (QOIs) to evaluate treatment success for patients undergoing surgery for bone metastases.
Outcome recommendations were adapted from the literature and field tested in a retrospective patient cohort to determine feasibility. The provisional outcome indicators were assessed during a modified RAND/Delphi consensus process by a group of patients, relatives and healthcare professionals with validated targets added.
1534 articles were reviewed. 38 quality objectives were extracted and assessed for feasibility using clinical records for 117 patients. 28 provisional outcome indicators proceeded to expert consensus and were reviewed by a group of 22 panellists including 10 patients and 4 relatives/carers. After two rounds, 15 QOIs were generated, with validated targets based on expert consensus. These included specific statements such as ‘surgery improves pain and reduces the need for morphine, target: at follow-up, pain is documented in 80% of individuals and 50% of these have reduced need for morphine’.
The published evidence and guidelines were adapted into a set of outcome indicators validated by patients, their family/carers and healthcare professionals. These can be used to compare care between centres and identify units of excellence in maximising good outcome after surgery for bone metastases.
To conduct a scoping review to explore the evidence of the process of do not attempt cardiopulmonary resuscitation (DNACPR) decision-making.
We conducted a systematic search and review of articles from 1 January 2013 to 6 April 2023 within eight databases. Through multi-disciplinary discussions and content analytical techniques, data were mapped onto a conceptual framework to report the data.
Search results (n=66 207) were screened by paired reviewers and 58 papers were included in the review. Data were mapped onto concepts/conceptual framework to identify timing of decision-making, evidence of involvement, evidence of discussion, evidence of decision documented, communication and adherence to decision and recommendations from the literature.
The findings provide insights into the barriers and facilitators to DNACPR decision-making, processes and implementation. Barriers arising in DNACPR decision-making related to timing, patient/family input, poor communication, conflicts and ethical uncertainty. Facilitators included ongoing conversation, time to discuss, documentation, flexibility in recording, good communication and a DNACPR policy. Challenges will persist unless substantial changes are made to support and promote examples of good practice. Overall, the review underlined the complexity of DNACPR decision-making and how it is a process shaped by multiple factors including law and policy, resource investment, healthcare professionals, those close to the patient and of central importance, the patient.
Social homecare workers provide essential care to those living at home at the end of life. In the context of a service experiencing difficulties in attracting and retaining staff, we have limited knowledge about the training, support needs and experiences of this group.
To gain a timely understanding from the international literature of the experience, training and support needs of homecare workers providing end-of-life care.
We conducted a rapid review and narrative synthesis using the recommendations of the Cochrane Rapid Reviews Methods Group. Building on a previous review, social homecare worker and end-of-life search terms were used to identify studies. Quality appraisal was conducted using a multimethods tool.
CINAHL and Medline databases (2011–2023; English language).
19 papers were included representing 2510 participants (91% women) providing new and deeper insights. Four themes were generated: (1) emotional support; homecare workers need to manage complex and distressing situations, navigating their own, their clients’ and clients’ family, emotions; (2) interaction with other social and healthcare workers; homecare workers are isolated from, and undervalued and poorly understood by the wider healthcare team; (3) training and support; recognising the deteriorating client, symptom management, practicalities around death, communications skills and supervision; (4) recognising good practice; examples of good practice exist but data regarding effectiveness or implementation of interventions are scant.
Social homecare workers are essential for end-of-life care at home but are inadequately trained, often isolated and underappreciated. Our findings are important for policy-makers addressing this crucial challenge, and service providers in social and healthcare.
There is limited evidence concerning the predictive value of health-related quality of life (HRQoL) on the presence of frailty in the context of cirrhosis. We aimed to elucidate the relationship between HRQoL and multidimensional frailty and to determine which HRQoL dimension independently impacted frail phenotype in our established cohort.
This was a prospective observational study by consecutively enrolling 355 patients with cirrhotic with decompensated signs in China. The HRQoL and frail phenotype were evaluated by the EuroQol-5D (EQ-5D) Questionnaire and Frailty Index, respectively. The relationship between EQ-5D utility index, as well as respective EQ-5D dimension, and Frailty Index was analysed according to the multiple linear regression analyses.
More than half of the patients (56.3%) reported problems in any dimension of the EQ-5D, suggestive of impaired HRQoL. Moreover, the proportion of patients experiencing some/extreme problems significantly increased across all five dimensions (all p<0.001) in correspondence to transition from the robust to frail phenotype. Multiple linear regression analyses demonstrated that age, ascites and hepatic encephalopathy were positively associated with Frailty Index, while EQ-5D utility index (standardised β coefficient= –0.442, p<0.001) negatively associated with Frailty Index. Notably, usual activities, self-care and mobility were the most influencing predictors associated with frailty.
Our results support a rapid HRQoL assessment via EQ-5D may assist in predicting multidimensional frailty, and usual activities, self-care and mobility tend to be remediable targets while taking their effect on frail phenotype into consideration among patients with cirrhosis.
Clear information and supportive care are necessary for oncology patients and their relatives to manage the disease (trajectory). Centres for information and support aim to address their needs by offering informal and non-medical formal services. This study evaluated whether the centres’ services offered meet the needs of its visitors, and whether there is interest for these among oncology patients treated at affiliated hospitals.
In this participatory action research, interviews were conducted among visitors of two centres (Patient Information Center Oncology (PATIO) and IntermeZZo) and among patients treated at the affiliated hospitals. Visitors were interviewed to share their experiences regarding the centres’ services offered. Patients from the hospitals were interviewed about their interest in such support. Data were collected during three different periods and adjustments were made to the centres’ services between measurements.
111 (PATIO) and 123 visitors (IntermeZZo) were interviewed, and 189 and 149 patients at the respective hospitals. Reasons to visit PATIO/IntermeZZo were to relax (93.1%), seek professional advice (54.6%) and meet peers (36.3%). Visitors indicated that the visits met their needs (99.1%), citing the accessible support and the expertise in oncology. 20% of patients interviewed at the hospitals expressed interest in visiting PATIO/IntermeZZo. The majority of patients (89.6%) considered these centres an integral part of their treatment process. These findings were stable over time.
Patients and their relatives highly value the services of hospital-affiliated centres for information and support. Future research should address how such centres best be integrated in the Dutch healthcare system.
‘Early’ specialist palliative care (SPC) has been shown to improve outcomes for patients with advanced cancer, yet patients are often referred late. ‘Enhanced supportive care’ (ESC) aims to facilitate earlier integrated supportive care for those with incurable cancer. This study aimed to explore clinicians’ understanding of ESC/SPC delivery through description of current service provision.
This national cross-sectional survey of 53 cancer centres had two parts. Part 1: Service details, was directed to lead ESC/SPC nurses or consultants about service configuration, and Part 2: Clinician understanding, targeting conceptual understanding of service aims including ESC/SPC teams and oncology consultants (n=262 surveys). Multiple-choice questions explored service provision, referral triggers and evidence of integration with oncology, with free-text responses. Quantitative results were analysed with Fischer’s exact test. Qualitative free text was line-by-line coded by two authors independently to derive themes.
56% (30/53) of SPC and ESC teams and 14% (14/100) of oncologists responded. Those involved in ESC self-reported greater integration with oncology compared with non-ESC teams, for example, joint case discussions (64.3%, 9/14 vs 23.1%, 3/13, p=0.05), and timelier patient referral ((>6 months before death vs <6 months) (10/14 vs 4/13, p=0.06)). Qualitative themes described ambiguity in definitions of supportive and palliative terms and a perception of timelier identification of patients when ESC was involved.
Providers of ESC perceive greater integration with oncology and potentially timelier referral for patients compared with teams not delivering ESC. Terminology around SPC and ESC remains uncertain across England.
To evaluate the value of Spinal Instability Neoplastic Score (SINS) in patients with spine metastasis who subsequently developed or did not develop metastatic spinal cord compression (MSCC).
In this single institutional retrospective descriptive observational study, of 589 patients with MSCC who were referred for radiotherapy, 34 patients (with 41 compression sites) met the inclusion criteria: availability of diagnostic MRI spine pre-development of MSCC (MRI-1) and at the time of MSCC development (MRI-2) (CordGroup).
For comparison, NoCordGroup consisted of 152 patients (160 sites) treated with radiotherapy to spinal metastases. SINS was compared between the two groups.
In CordGroup, the median interval between MRI-1 and MRI-2 was 11 weeks. The median SINS was 8 (range: 4–14) and 9 (range: 7–14) on MRI-1 and MRI-2, respectively. In NoCordGroup, the median SINS was 6 (range: 4–10).
Our study showed a trend in difference in SINS value between the two groups. This difference should be a subject of future prospective research in this patient population with poor survival.
Symptom management and support of the family members (FMs) are considered essential aspects of palliative care. During end of life, patients are often not able to self-report symptoms. There is little knowledge in the literature of how healthcare professionals (HCPs) assess symptoms compared with FMs. The objective was to compare the assessment of symptoms and symptom relief during the final week of life between what was reported by FMs and what was reported by HCPs.
Data from the Swedish Register of Palliative Care from 2021 and 2022 were used to compare congruity of the assessments by the FMs and by HCPs regarding occurrence and relief of three symptoms (pain, anxiety and confusion), using Cohen’s kappa.
A total of 1131 patients were included. The agreement between FMs and HCPs was poor for occurrence of pain and confusion (kappa 0.25 and 0.16), but fair for occurrence of anxiety (kappa 0.30). When agreeing on a symptom being present, agreement on relief of that symptom was poor (kappa 0.04 for pain, 0.10 for anxiety and 0.01 for confusion). The trend was that HCPs more often rated occurrence of pain and anxiety, less often occurrence of confusion and more often complete symptom relief compared with the FMs.
The views of FMs and HCPs of the patients’ symptoms differ in the end-of-life context, but both report important information and their symptom assessments should be considered both together and individually. More communication between HCPs and FMs could probably bridge some of these differences.
This study aimed to explore the prevalence of potentially inappropriate medications (PIMs) in a cohort of older adults with advanced cancer referred to palliative care. Secondary objectives were to describe the categories of identified PIMs and assess risk factors associated with their presence in this population.
This retrospective, observational study evaluated patients with advanced cancer admitted to a tertiary university hospital in Madrid, Spain and referred to palliative care between 1 January 2020 and 30 June 2020. Demographic, clinical, and pharmacotherapeutic data were obtained from the electronic medical records and regional databases. PIMs were assessed using the Screening Tool of Older Persons Prescriptions in Frail adults (STOPPFrail) criteria, V1.
Among 123 patients (median age 80 years (IQR 73.5–87), 64.2% male), 74% presented at least one PIM according to the STOPPFrail criteria. The most common categories of inappropriate medications were lipid-lowering therapies, proton pump inhibitors, calcium supplements, and oral antidiabetics. The number of chronic comedications was significantly associated with PIM presence.
Our study found a high prevalence of PIM among a cohort of older adults with advanced cancer and short life expectancy. This underlines the need for a comprehensive medication review to optimise pharmacotherapy in this population.
To examine the intensity of care in the last 3 days of life in different medical settings of a comprehensive cancer centre.
In this retrospective study, the charts of patients who died in hospital from July 2019 to June 2023 were reviewed. The units taken into consideration were acute palliative care unit (APCU), oncology (ONC) and haematology (HEM), which included also the transplantation unit. Age, gender, diagnosis, Karnofsky or Eastern Cooperative Oncology Group, drugs used in the last 3 days of life, respiratory support, transfusion, parenteral nutrition, imaging studies, blood gas analysis, biochemistry, consultations and endoscopy were retrieved.
Data on 177 patients who died in the period taken into consideration were reviewed. APCU was characterised by more frequent use of opioids, midazolam and scopolamine butylbromide. On the other side, HEM was characterised by higher use of vasoactive drugs, antibiotics, transfusions, imaging studies, growth factors, consultations, biochemistry, blood gas analysis, parenteral nutrition and ventilatory support. ONC was characterised by the larger use of anticoagulants and ventilatory support.
A more aggressive treatment was performed in HEM, as denoted by a large use of life-sustaining treatments and investigations. Taken together, these data show that the way to die is different depending on the setting of care. End-of-life funnel is similar for every dying patient and choices should be based on short prognosis and expectation rather than on disproportionate and afinalistic treatments.
The provision of palliative care in nursing homes (NHs) is of paramount importance, a realism underscored by the frailty and medical complexity of the residents. However, palliative care (PC) education tends to be resource-intensive both for educators and healthcare workers (HCWs). The aim of this study was to investigate how PowerFacts, a video animation series that taught basic PC to NH HCWs in Singapore impacted their knowledge, attitudes and confidence.
A cohort study design was adopted for the study. A total of 264 NH HCWs across 12 NHs in Singapore participated in the study from January 2021 to October 2022. Participants were assessed using a 20-summative multiple-choice question assessment, a 30-item Frommelt Attitude Toward Care of the Dying Scale (FATCOD) and four questions on their confidence level before and after the PowerFacts course.
Paired t-test was performed. Significant changes were noted in the knowledge and confidence score post-intervention. The knowledge score improved significantly from preintervention (12.2±3.5) to post-intervention (15.8±3.4; p<0.01). The confidence score increased significantly from 14.7±2.7 to 16.7±2.2 (p<0.01). However, the FATCOD score did not reveal any significant changes between preintervention and post-intervention results (p>0.05).
PowerFacts has demonstrated its potential as a valuable addition to the array of teaching methods available to NH HCWs. Future studies are required to evaluate the impact of animation on patient care and clinical practice.
Person-centred care (PCC), which incorporates patients’ preferences and values for medical care and their life, has been proposed in decision-making for promoting advance care planning (ACP) among patients with kidney failure. Therefore, we aimed to examine variations in PCC across facilities and the association between PCC and ACP participation.
This multicentre cross-sectional study included Japanese adults undergoing outpatient haemodialysis at six dialysis centres. The main exposure was PCC, measured using the 13-item Japanese version of the Primary Care Assessment Tool-short form. The main outcome was ACP participation as defined by discussion with the attending physician or written documentation or notes regarding treatment preferences. A general linear model was used to examine the covariates of the quality of PCC. Modified Poisson regression models were used to examine the associations of ACP participation.
A total of 453 individuals were analysed; 26.3% of them participated in ACP. Higher PCC was associated with greater ACP participation in a dose–response manner (adjusted prevalence ratios for the first to fourth quartiles: 1.36, 2.31, 2.64 and 3.10, respectively) in respondents with usual source of care (USC) than in those without USC. Among the PCC subdomains, first contact, longitudinality, comprehensiveness (services provided) and community orientation were particularly associated with ACP participation. A maximum of 12.0 points of facility variation was noted in the quality of PCC.
High quality of PCC was associated with ACP participation. The substantial disparity in PCC between facilities provides an opportunity to revisit the quality improvement in PCC.
Geriatric oncology underscores the significance of assessing functional age in guiding medical decisions, endeavouring to delineate practical and efficacious methodologies for evaluating functionality, adapting therapeutic regimens and attenuating the risks of treatment-related deterioration.
In this prospective study, we aimed to delineate the characteristics of older patients presenting for their initial oncology appointment by using geriatric screening (G8 score) and comprehensive geriatric assessment (CGA), while also assessing the feasibility of these evaluations. Secondary objectives included comparing the initial Eastern Cooperative Oncology Group (ECOG) performance status and any deviations from standard therapeutic strategies against the identified frailty in geriatric assessment.
Most patients exhibited a G8 score ≤14 and underwent comprehensive geriatric assessment. While oncologists typically perceive patients’ general conditions, CGA enables a systematic assessment, providing a comprehensive characterisation of elderly patients to inform therapeutic decisions and address identified fragilities. The CGA highlighted vulnerabilities across all primary domains. Notably, even among patients with ECOG scores of 0 and 1, the application of G8 score and CGA revealed numerous fragilities. Consistent with existing literature, these scales offered additional insights beyond ECOG evaluation alone, suggesting their potential to guide therapeutic adaptations for this demographic.
Ongoing research and continuous evaluation are imperative to refine and broaden the implementation of geriatric-focused interventions.
This case series demonstrates four cases of patients with normal liver function tests who developed significant opioid toxicity on conversion from combination oxycodone/naloxone to oxycodone at equivalent doses, necessitating significant dose reduction.
In each case, a cause for intra-hepatic shunting such as cirrhosis, porto-systemic collaterals or thrombosis were identified, highlighting these as cautionary features when prescribing combination preparations of oxycodone/naloxone and the possible need for dose reduction if converting to oxycodone.
]]>It is unknown to what extent the fluid retention (FR) status disrupts the detection of weight loss rate (WLR) in adult patients with advanced cancer. This study aimed to determine the association of FR status with WLR.
This study was a secondary analysis of a prospective cohort study. FR was evaluated as follows: oedema (0, no; 1, yes), pleural effusion (0, no; 1, yes but asymptomatic; 2, symptomatic) and ascites (0, no; 1, yes but asymptomatic; 2, symptomatic). Patients were divided into three groups according to their FR scores: no-FR (0), moderate-FR (1–2) and high-FR (3–5). Multiple regression analysis was performed.
Four hundred and twenty patients were categorised: no-FR group (n=164), moderate-FR group (n=158) and high-FR group (n=98). The prevalence of oedema, pleural effusion and ascites was 63.9%, 27.8% and 36.7% in the moderate-FR group, and 93.9%, 61.3% and 82.6% in high-FR group. The means of WLR were 9.2, 8.4 and 3.8 in the groups. The high-FR group and the FR score of 5 were correlated with WLR (estimate –4.71, 95% CI –7.84 to –1.58; estimate –10.29, 95% CI –17.84 to –2.74).
The coexistence of FR was significantly correlated with WLR.
In Japan’s ageing society, the utility of US-based and UK-based palliative care screening tools in the inpatient setting is unknown. The purpose of this study is to identify the unmet palliative care needs of patients who are admitted to an acute care hospital using the US-based and UK-based screening tools.
This single-centre, cross-sectional study included patients who were admitted to an acute care hospital in Tokyo, Japan, from November 2019 to January 2020. We used the Supportive and Palliative Care Indicator Tool and Palliative Care Screening Tool in the Emergency Department among admitted patients.
126 patients (51.6%) were screened positive in total. Among these patients, the main comorbid conditions were dementia/frailty (85.7%) and neurological disease (50.8%).
One out of every two internal medicine inpatients at acute care hospitals may have palliative care needs. Given the lack of adequate palliative care workforce in Japan, a modified screening tool to capture the most high-risk patients may be necessary.
Patients with advanced cancer may develop bacterial infections (BI) as their general condition worsens, but general blood tests often find it difficult to distinguish them from non-bacterial infections (NBI). The present prospective study was undertaken to investigate the effectiveness of serum procalcitonin levels in distinguishing between BI and NBI in patients with advanced urological cancer.
This study prospectively evaluated patients diagnosed with locally advanced or metastatic or recurrent urological cancer in our department from September 2013 to December 2019. Body temperature was measured in the axilla and the measurement results were recorded. Febrile episodes of ≥38.0°C were analysed, and written patient consent was obtained at the onset of the fever.
Of 75 patients enrolled in the present study, 90 febrile episodes were analysed. A total of 34 of 90 febrile episodes were regarded as BI, and the remaining 56 febrile episodes as NBI. The median procalcitonin value was significantly higher in the BI group (p=0.0015), while no significant difference was found between the two groups for white blood cell count and C reactive protein. Additionally, a white blood cell count of less than 1.0x19/L resulted in BI in all cases. The procalcitonin receiver operating characteristic area under the curve was 0.710 (95% CI 0.586 to 0.83), excluding cases with white blood cell counts of <1.0 x 103/μL.
Procalcitonin is a rapid and affordable marker for differentiation between BI and NBI in patients with advanced urological cancer.
Higher specialty trainees are expected to achieve clinical and non-clinical skills during training in preparation for a consultant role. However, evidence from many specialties from different countries suggests that new consultants are less prepared in non-clinical skills. The transition from trainee to a consultant phase can be challenging. The study aims to identify if new UK Palliative Medicine consultants, within 5 years of their appointment, feel prepared in clinical and non-clinical skills after completing specialty training and understand the support available for them.
An online survey, designed using previous literature, was distributed via the Association for Palliative Medicine email and social media. Five-point Likert scales and drop-down options to record preparedness were used. Ethics approval was obtained.
Forty-four participants from different UK regions completed the survey; 80% were female. The majority felt very/extremely prepared in audit (84%), clinical skills (71%), interaction with colleagues (70%). Majority moderate preparation was human resources (50%), organisation structure (68%) and leadership (52%). Most were not at all or slightly prepared in financial management (70%) and in complaint management (43%). The majority (75%) reported that departmental colleagues gave the most support in stressful situations but almost 49% did not have formal support.
New palliative medicine consultants require support with some non-clinical roles such as management of complaints and finances. This is consistent with findings from other specialties. New consultants would benefit from formal support. Future research could focus on how trainees could be supported to gain more experience in non-clinical domains.
UK campaigners for a law permitting assisted dying (AD) restricted to those with a maximum life expectancy of 6 months claim that this would largely remove the need for UK residents to seek AD in Switzerland. We wanted to discover whether this prediction was correct.
We analysed the diagnoses of UK residents who had such deaths including, for the first time, data from all three of the main Swiss providers of AD to non-residents, comparing them with figures from Oregon, which has a 6-month restriction.
Only 22.7% of UK residents had cancer (Oregon 72.5%) while nearly half (49.6% and over half including dementias) had neurological conditions (Oregon 11.2%) and many with prognoses of much more than 6 months.
Overall, less than half would meet a 6-month prognosis criterion. This has significant implications for patients, palliative care clinicians and legislators.
Examine the prevalence of burn-out in health professionals working in a hospital dedicated to patients with cancer. Explore the relationship between attachment style and burn-out in healthcare professionals working in Oncology and Palliative Care.
Cross-sectional descriptive and correlational study with a sample of 337 health professionals working in a tertiary hospital dedicated to oncology care. The evaluation protocol included a sociodemographic questionnaire, two burn-out (Copenhagen Burnout Inventory (CBI) and Maslach Burnout Inventory) and attachment (Adult Attachment Scale) scales. Statistical analysis was performed by IBM SPSS Statistics V.25. The tests were performed at a significance level of 5%.
In the sample, there is a predominance of professionals working in oncology services (76,8%). Comparing professionals who work in oncology services and palliative care, it appears that just over half have high levels of personal burn-out, however the groups do not differ significantly (53.5% vs 56.8%, p=0.619); the same is observed in work-related (p=0.626) and patient-related burn-out (p=0.672). The number of hours per week in which one has the perception that is exposed to suffering is positively correlated with personal, work-related burn-out and exhaustion (p<0.05). Correlating the two burn-out scales in the sample, it is observed that higher levels of personal, work-related and patient-related burn-out are associated with higher levels of emotional exhaustion and depersonalisation, as well as lower levels of personal accomplishment (p<0.001). Considering the correlation between the burn-out dimensions and attachment scale, it appears that high levels of exhaustion, depersonalisation, personal, work-related and patient-related burn-out were associated with higher levels of anxiety (p<0.001). Similar results were found in the palliative care professionals sample.
The constant exposure to the suffering of others places high emotional demands on oncology and palliative care professionals, making them vulnerable to burn-out. Burn-out is a multifactorial process, that involves individual characteristics with environmental effects. There are no significant differences between Oncology and Palliative Care professionals. Higher levels of personal, work-related and patient-related burn-out are associated with higher levels of anxiety. These results suggest that an anxious attachment style increases the risk of burn-out . In the sample, the most important predictor of burn-out was the number of hours per week exposed to suffering. In order to prevent burn-out, there is a growing evidence that suggests mindfulness, exercise, high-quality sleep and pursuit of happiness can improve burn-out in healthcare professionals. This work brings the advantage of using two burn-out assessment scales (particularly CBI scale), in addition to trying to correlate the level of burn-out and attachment in professionals exposed to suffering.
The propensity for certain analgesics to cause sedation is well documented, yet physician–patient dialogue does not routinely include pre-emptive exploration of preferences regarding this side effect.
To investigate the extent to which palliative patients would accept sedation as a side effect of analgesia and to identify factors affecting decision-making.
Patients (n=76) known to a specialist palliative care services were given hypothetical scenarios regarding pain and asked about the acceptability of varying levels of sedation occurring as an analgesic side effect. Demographic data, including diagnosis, performance status and experience of pain and sedation, were collated for evaluation of the influence of these factors on patient opinion.
Most patients (89.47%) would be quite or very likely to accept mild sedation. A significant minority (40.79%) would accept high levels of sedation. There is no significant association with the acceptability of sedation according to demographics. Almost half (40.79%) reported that their responses may change if the prognosis were extended, typically for less sedation with a longer prognosis.
Increasing levels of sedation are less acceptable, although there is significant variation in views. Palliative care patients are likely to indicate preferences regarding their acceptability of sedation. Palliative physicians must explore preferences on an individualised basis.
Patients with non-curative malignancy can receive palliative radiotherapy (PR) to alleviate symptoms. However, choosing the right patient to receive PR can be challenging, as some patients may not survive long enough to gain benefit. This study aims to identify prognostic factors for overall survival (OS) and 30-day mortality (30DM) following PR and to test these in a real-world cohort.
A retrospectively collected data set of all adults completing PR between 1 August 2018 and 31 December 2018 at a single centre (n=214, Southend University Hospital NHS Foundation Trust, UK) was used to test prognostic factors. Factors such as demographics, tumour primary, treatment area, fractionation regime, performance status (PS), progressive disease (PD), opioid or steroid use and haemoglobin level, as well as overall survival, were collected. Cox regression was used to examine survival predictors, and logistic regression was used to determine the predictive strength of factors for 30DM.
Overall 30DM was 14%. There was significantly worse survival in patients with poor PS (HR 1.2406, 95% CI 0.94 to 1.64. p=0.01). Patients with PS 3 had a median OS of 75 days and were more likely to experience 30DM (OR 6.2, 95% CI 1.226 to 45.42, p=0.03). Patients with PD outside of the radiation field (46%, 30 out of 65 documented) had significantly worse OS (HR 5.24, 95% CI 2.19 to 12.5, p<0.001).
Poor PS and PD were prognostic of OS and 30DM. Future work should include validation with a prospectively collected cohort.
Early palliative care improves the quality of life of older patients with cancer. This work aimed to analyse the effect of sociodemographic, geriatric, and tumour-related determinants on hospital-based palliative care (HPC) referral in older patients with cancer, taking into account competing risk of death.
Older adults with diagnosed cancer from 2014 to 2018 according to the general cancer registry of Gironde (French department) were identified in three population-based cohorts on ageing (PAQUID, 3C - Three City, AMI). Cause-specific Cox models focused on 10 usual determinants in geriatric oncology and palliative care: age, gender, living alone, place of residency, tumour prognosis, activities of daily living (ADL) and instrumental-ADL (IADL) limitations, cognitive impairment, depressive disorders, and polypharmacy.
131 patients with incident cancer (mean age: 86.2 years, men: 62.6%, poor cancer prognosis: 32.8%) were included, HPC occurring for 26 of them. Unfavourable cancer prognosis was a key determinant for HPC referral (HR 7.02, 95% CI 2.86 to 17.23). An altered IADL score was associated with precocious (first year) referral (HR 3.21, 95% CI 1.20 to 8.64, respectively). Women had a higher rate immediately (first week) after diagnosis (HR 8.64, 95% CI 1.27 to 87.27).
Cancer prognosis, functional decline and gender are independent factors of HPC referral in older patients with cancer. These findings may help for a better anticipation of the healthcare pathway.
This study examined the effects of virtual reality (VR) among palliative care patients at an acute ward. Objectives included evaluating VR therapy benefits across three sessions, assessing its differential impact on emotional versus physical symptoms and determining the proportion of patients experiencing clinically meaningful improvements after each session.
A mixed-methods design was employed. Sixteen palliative inpatients completed three personalised 20 min VR sessions. Symptom burden was assessed using the Edmonton Symptom Assessment Scale-Revised and quality of life with the Functional Assessment of Chronic Illness Therapy (FACIT-Pal-14). Standardised criteria assessed clinically meaningful changes. Quantitative data were analysed using linear mixed models.
Quality of life improved significantly pre-VR to post-VR with a large effect size (Cohen’s d: 0.98). Total symptom burden decreased after 20 min VR sessions (Cohen’s d: 0.75), with similar effect sizes for emotional (Cohen’s d: 0.67) and physical symptoms (Cohen’s d: 0.63). Over 50% of patients experienced clinically meaningful improvements per session, though substantial individual variability occurred.
This study reveals the nuanced efficacy of personalised VR therapy in palliative care, with over half of the patients experiencing meaningful benefits in emotional and physical symptoms. The marked variability in responses underscores the need for realistic expectations when implementing VR therapy.
Medical cannabinoids have become increasingly popular over the last decade. Preclinical trials suggest cannabinoids, for example, cannabidiol (CBD), may provide an anticancer effect; however, good-quality clinical information supporting this is lacking. We assessed the effect of CBD treatment on disease progression and survival in patients enrolled in a study of CBD versus placebo for symptom management in patients with advanced cancer (MEDCAN-1).
We reviewed the clinical records of all patients enrolled in the MEDCAN-1 Study (CBD vs placebo) at days 14, 28 and 56 of study follow-up, for evidence of disease progression. The proportion of participants with disease progression by treatment arm at each time point was compared, as was survival between both groups from study entry to the censor date (end of study period) and the effect of treatment arm and disease progression status on survival.
Of the 135 patient records assessed, 128 were included in the final analysis. 36% (n=46) had progressive disease documented at day 28, rising to 49.2% (n=63) by day 56. No significant difference in disease progression was noted between the two groups at days 14 (p=0.33), 28 (p=0.67) or 56 (p=0.50). There was no difference in survival between both groups from study entry to censor date (p=0.38). Disease progression at day 14 was highly predictive of mortality (p<0.001).
In this substudy analysis, treatment with CBD oil did not affect disease progression or survival over the course of 56 days in patients with advanced cancer.
Ariadne Labs’ Serious Illness Care Program (SICP), inclusive of the Serious Illness Conversation Guide (SICG), has been adapted for use in a variety of settings and among diverse population groups. Explicating the core elements of serious illness conversations could support the inclusion or exclusion of certain components in future iterations of the programme and the guide.
This integrative systematic review aimed to identify and describe core elements of serious illness conversations in relation to the SICP and/or SICG.
Literature published between 1 January 2014 and 20 March 2023 was searched in MEDLINE, PsycINFO, CINAHL and PubMed. All articles were evaluated using the Joanna Briggs Institute Critical Appraisal Guidelines. Data were analysed with thematic synthesis.
A total of 64 articles met the inclusion criteria. Three themes were revealed: (1) serious illness conversations serve different functions that are reflected in how they are conveyed; (2) serious illness conversations endeavour to discover what matters to patients and (3) serious illness conversations seek to align what patients want in their life and care.
Core elements of serious illness conversations included explicating the intention, framing, expectations and directions for the conversation. This encompassed discussing current and possible trajectories with a view towards uncovering matters of importance to the patient as a person. Preferences and priorities could be used to inform future preparation and recommendations. Serious illness conversation elements could be adapted and altered depending on the intended purpose of the conversation.
The aim of the systematic review was to identify conceptual models and interventions designed to improve health literacy in caregivers of adults with a chronic disease/disability.
MEDLINE, CINAHL, PsycINFO and Embase were searched for relevant literature. Articles were included if they focused on adults who provided informal care to someone aged 18+ with a chronic disease/disability. Quantitative studies were included if they reported an intervention designed to improve caregiver health literacy (CHL) and assessed outcomes using a validated measure of health literacy. Qualitative and mixed method studies were included if they described a conceptual model or framework of CHL or developed/assessed the feasibility of an intervention. Study quality was appraised using the Mixed Methods Assessment Tool.
Eleven studies were included. Five studies used pre–post design to assess outcomes of an intervention; four described intervention development and/or pilot testing; two described conceptual models. Two of five studies reported pre–post intervention improvements in CHL; one reported an improvement in one of nine health literacy domains; two reported no improvements following intervention. Interventions predominantly aimed to improve: caregiver understanding of the disease, treatment and potential outcomes, day-to-day care, self-care and health provider engagement. Few interventions targeted broader interpersonal and health service factors identified as influencing CHL.
Evidence on the development and assessment of comprehensive CHL interventions is scarce. Recommendations include the development of interventions that are guided by a CHL framework to ensure they address individual, interpersonal and health service/provider factors that influence CHL.
To evaluate participant-reported atypical dysphagia symptoms and their association with oxaliplatin treatment.
This observational study recruited 73 adults with solid tumours outside the head, neck or upper gastrointestinal tract. All had dysphagia, were in hospital or hospice and were treated by Medical Oncology, Radiation Oncology or Palliative Care. Participants reported their experiences of swallowing difficulties by semistructured interview. Oral Health Assessment Tool was used to ensure swallow difficulties were not due to mucositis. Responses were transcribed and analysed by content analysis. Atypical difficulties were examined for association with oxaliplatin treatment by Fischer’s Exact.
Oxaliplatin treatment was associated with three unusual dysphagia symptoms: problems with cold or hot bolus (p=0.01), pins and needles (p=0.001) and throat spasm (p=0.035). Carbonation was problematic for one participant. Chemotherapy commencement coincided with swallow problem onset for 67%. Dysphagia symptoms were unrelated to mucositis (p=0.165).
Swallowing difficulties in oxaliplatin-treated patients are atypical and attributable to chemotherapy commencement. Previous research suggests that dysphagia is triggered by cold exposure, but hot and carbonated boluses also caused problems here. Dysphagia symptoms and triggers should be studied more fully to help patients safely enjoy their meals and prevent food avoidance, which could exacerbate malnutrition.
This study aims to test the ability of the surprise question (SQ), when asked to emergency physicians (EPs), to predict in-hospital mortality among adults admitted to an emergency room (ER).
This prospective cohort study at an academic medical centre included consecutive patients 18 years or older who received care in the ER and were subsequently admitted to the hospital from 20 April 2018 to 20 October 2018. EPs were required to answer the SQ for all patients who were being admitted to hospital. The primary outcome was in-hospital mortality.
The cohort included 725 adults (mean (SD) age, 60 (17) years, 51% men) from 58 128 emergency department (ED) visits. The mortality rates were 20.6% for 30-day all-cause in-hospital mortality and 23.6% for in-hospital mortality. The diagnostic test characteristics of the SQ have a sensitivity of 53.7% and specificity of 87.1%, and a relative risk of 4.02 (95% CI 3.15 to 5.13), p<0.01). The positive and negative predictive values were 57% and 86%, respectively; the positive likelihood ratio was 4.1 and negative likelihood ratio was 0.53; and the accuracy was 79.2%.
We found that asking the SQ to EPs may be a useful tool to identify patients in the ED with a high risk of in-hospital mortality.
Negative perceptions about palliative care (PC), held by patients with cancer and their families, are a barrier to early referral and the associated benefits. This review examines the approaches that support the task of introducing PC to patients and families and describes any evaluations of these approaches.
A systematic review with a systematic search informed by the Preferred Reporting Items for Systemic Reviews and Meta-Analyses guidelines was performed on the online databases MEDLINE, PsychInfo and CINAHL from May 2022 to July 2022. Identified studies were screened by title and abstract, and included if they were empirical studies and described an approach that supported the introduction of PC services for adult patients. A narrative-synthesis approach was used to extract and present the findings.
Searches yielded 1193 unique manuscripts, which, following title and abstract screening, were reduced to 31 papers subject to full-text review, with a final 12 studies meeting eligibility criteria. A diverse range of included studies described approaches used to introduce palliative care, which may be broadly summarised by four categories: education, clinical communication, building trust and rapport and integrative system approaches.
While educational approaches were helpful, they were less likely to change behaviours, with focused communication tasks also necessary to facilitate PC introduction. An established relationship and trust between patient and clinician were foundational to effective PC discussions. A framework to assist clinicians in this task is likely to be multidimensional in nature, although more quantitative research is necessary to establish the most effective methods and how they may be incorporated into clinical practice.
The intent of this study: (1) The article delves into the range of symptoms linked to HFS, and stresses the necessity of a holistic strategy and the difference that a palliative physician can contribute during cancer treatment—in picking up certain intricate aspects of patient care and addressing them. (2) The article also highlights the comprehensive approach through the incorporation of quality-of-life assessments, with the goal of enhancing patient outcomes, overall care experience within an integrated healthcare framework.
]]>Results Six studies were conducted exclusively on NfL in patients with delirium. Three of these studies demonstrated that high plasma NfL levels preoperatively predict delirium in older adult patients postoperatively. Two studies demonstrated that high levels of NfL in intensive care unit (ICU) patients are correlated with delirium duration and severity. One study found that incident delirium in older adult patients was associated with increased median NfL levels during hospitalisation.
Conclusions Targeted studies are required to understand if NfL is a susceptibility biomarker for delirium in patients with advanced cancer. In this palliative care context, better accessible matrices, such as saliva or urine, would be helpful for repetitive testing. Improvement of biological measures for delirium can lead to improved early recognition and lay the groundwork for novel therapeutic strategies.
]]>The responsibility of caring for patients with leukaemia places a heavy burden on family caregivers (FCs) and negatively impacts their quality of life (QoL). This study aimed to investigate the effects of peer support (PS)-based online education programme on the burden of care (BoC) and QoL of FCs of patients with leukaemia.
This before-after study involved a total of 80 eligible FCs of patients with leukaemia (40 individuals per group). The participants received the necessary information from a researcher and peers through online sessions and WhatsApp group. To collect data, the Zarit Burden Interview and the Caregiver Quality of Life Index-Cancer (CQOLC) had been been completed once before the intervention and once 1 month after the intervention.
There was no significant difference between the two groups regarding baseline variables except the mean BoC that was significantly higher in the intervention group (IG) (p<0.001). However, after controlling for the effects of confounding variables, the mean BoC score of participants in IG was significantly lower than that of the control group (p<0.001). Additionally, there was no significant difference between the two groups in terms of CQOLC before (p=0.178) and after (p=0.538) the intervention.
The PS-based online education programme had a positive impact on reducing the care burden of FCs of patients with leukaemia. This programme can effectively reduce costs, particularly during emergencies and crises such as pandemics, as it eliminates the need for FCs and peers to physically visit hospitals.
The study was registered at the Iranian Registry of Clinical Trials on 18 July 2021 (IRCT registration number: IRCT20210507051209N1).
Legacy—how one hopes to be remembered after death—is an unexplored and important dimension of decision-making for people facing serious illness.
We conducted a scoping review to answer the following research questions: (1) How do people making treatment choices conceive of legacy? and (2) What treatment choices do people make with legacy in mind?
Participants included people facing serious illness who discussed how they wanted to be remembered after their own death, or how they hoped to impact others, as they made treatment choices. Studies in English published between 1990 and 2022 were included.
We conducted searches in electronic databases including Medline/PubMed, CINAHL, PsycInfo, SocialWork, AnthropologyPlus, Web of Science, ProQuest and EMBASE databases.
We used an electronic screening tool to screen abstracts and review full-text articles suitable for inclusion. We analysed included articles using Atlas.ti. We constructed tables and narratively synthesised the findings.
We identified three major intersecting legacy goals that influence choices people facing serious illness make about their treatment and health behaviours, and the types of choices people make with legacy in mind. The three legacy goals are: remembrance of the individual self, remembrance of the social self and impact on others’ well-being.
We identify the importance of legacy to patient treatment choices. Understanding for whom this construct is important, what types of legacy goals people hold and how those goals impact treatment choices is necessary to provide patient-centred whole-person care to people facing serious illness.
Poor prognosis and lack of effective therapeutic options have made palliative care an integral part of the management of severe COVID-19. However, clinical studies on the role of palliative care in severe COVID-19 patients are lacking. The objective of our study was to evaluate the utility of palliative care in intubated COVID-19 patients and its impact on in-hospital outcomes.
Rate of palliative care consult, patient-level variables (age, sex, race, income, insurance type), hospital-level variables (region, type, size) and in-hospital outcome variables (mortality, cost, disposition, complications) were recorded.
We retrospectively analysed 263 855 intubated COVID-19 patients using National Inpatient Sample database from 1 January 2020 to 31 December 2020. 65 325 (24.8%) patients received palliative care consult. Factors associated with an increased rate of palliative care consults included: female gender (p<0.001), older age (p<0.001), Caucasian race (p<0.001), high household income (p<0.001), Medicare insurance (p<0.001), admission to large-teaching hospitals (p<0.001), patients with underlying comorbidities, development of in-hospital complications and the need for intensive care procedures. Patients receiving palliative consults had shorter hospital length of stay (LOS) (p<0.001) and no difference in hospitalisation cost (p=0.15).
Palliative care utilisation rate in intubated COVID-19 patients was reflective of disease severity and disparities in healthcare access. Palliative care may help reduce hospital LOS. Our findings also highlight importance of improving access to palliative care services and its integration into the multidisciplinary management of severe COVID-19 patients.
To determine the effectiveness of pressure ulcer prevention training for the relatives of palliative care inpatients.
This study had a pretest–post-test design with parallel groups and a randomised control group, and it was conducted with 70 (experimental n=35, control n=35) patient relatives. A personal information form and Pressure Ulcer Knowledge Test were used as data collection tools. Parametric tests were performed for statistical analysis.
The pressure ulcer prevention training given to the relatives of palliative care patients in the experimental group was significantly effective in increasing their level of knowledge about these ulcers (p<0.05). However, the routine ward discharge training given to the relatives of palliative care patients in the control group was not significantly effective in increasing their level of knowledge about them (p>0.05).
Specialised training regarding pressure ulcers should be given to the relatives of patients receiving palliative care. It is important that the educational materials used in this trainings appeal to all sensory organs in order to improve the educational outcomes.
Patients on anticancer therapy attending palliative care services often have oral health problems, but not enough is known in this regard (in India). This cross-sectional study aimed to elucidate this issue.
Participants were 98 patients with metastatic cancer (52 males, 46 females) who attended the palliative care clinic and were assessed by a multidisciplinary team consisting of dental health professionals working alongside the palliative care team, between August 2021 and October 2022. Their demographic and medical details were collected from the charts. Details about oral health were assessed using the National Cancer Institute Common Terminology Criteria for Adverse Events for dysphagia and xerostomia, Dental Caries Decayed, Missing, and Filled Teeth (DMFT) index, and the WHO Mucositis scale. Quality of life was assessed using the European Organisation for Research and Treatment of Cancer Quality of Life Module for Oral Health (EORTC QLQ-OH15).
Patients had an average age of 58 years, with 46.9% having an Eastern Cooperative Oncology Group score of 1, and 61 (64.9%) receiving anticancer treatment along with palliative care. Dental issues were prevalent, with 39.5% classified as DMFT score grade 2. Subgroup analysis showed higher mean DMFT scores in head/neck cancers, particularly in those receiving radiation therapy (2.3) versus without (1.7), and older age (p<0.05).
Patients with cancer on anticancer treatment attending a palliative care clinic, especially those with head/neck cancers and older age, had poor oral health. Further prospective research with a dentist on the team is warranted to assess its impact.
To develop and validate a new prognostic model to predict 90-day mortality in patients with incurable cancer.
In this prospective cohort study, patients with incurable cancer receiving palliative care (n = 1322) were randomly divided into two groups: development (n = 926, 70%) and validation (n = 396, 30%). A decision tree algorithm was used to develop a prognostic model with clinical variables. The accuracy and applicability of the proposed model were assessed by the C-statistic, calibration and receiver operating characteristic (ROC) curve.
Albumin (75.2%), C reactive protein (CRP) (47.7%) and Karnofsky Performance Status (KPS) ≥50% (26.5%) were the variables that most contributed to the classification power of the prognostic model, named Simple decision Tree algorithm for predicting mortality in patients with Incurable Cancer (acromion STIC). This was used to identify three groups of increasing risk of 90-day mortality: STIC-1 - low risk (probability of death: 0.30): albumin ≥3.6 g/dL, CRP <7.8 mg/dL and KPS ≥50%; STIC-2 - medium risk (probability of death: 0.66 to 0.69): albumin ≥3.6 g/dL, CRP <7.8 mg/dL and KPS <50%, or albumin ≥3.6 g/dL and CRP ≥7.8 mg/dL; STIC-3 - high risk (probability of death: 0.79): albumin <3.6 g/dL. In the validation dataset, good accuracy (C-statistic ≥0.71), Hosmer-Lemeshow p=0.12 and area under the ROC curve=0.707 were found.
STIC is a valid, practical tool for stratifying patients with incurable cancer into three risk groups for 90-day mortality.
Established models of serious illness communication training frequently include role play with simulated patient actors. Yet preparing for communication courses can feel challenging, as most faculty have minimal experience directing actors, and no literature exists to guide faculty in how to lead course rehearsals.
A team of palliative care educators partnered with a seasoned acting teacher to design and implement a faculty guide for directing actors during communication course rehearsals. Their approach involved a series of brainstorming sessions, creation and piloting of a draft rehearsal guide and revisions based on actor and faculty feedback.
The actor rehearsal guide offers a stepwise approach to beginning a rehearsal, rehearsing a patient case, giving feedback to the actor and ensuring the actor responds appropriately to learners of varied skill levels. From early 2021 to late 2022, the team used the guide to prepare for 36 courses, which trained 446 clinicians. Faculty and actors noted that the guide fostered predictable and efficient rehearsals.
A novel actor rehearsal guide can support preparation for communication courses at a single institution. Next steps include disseminating the guide to other institutions and evaluating the guide’s impact on faculty and actors’ experience of rehearsals and learners’ experience of training.
In Canada, patients whose acute medical issues have been resolved but are awaiting discharge from hospital are designated as alternate level of care (ALC). We investigated short-term mortality and palliative care use following ALC designation in Ontario, Canada.
We conducted a population-based retrospective cohort study of adult, acute care hospital admissions in Ontario with an ALC designation between January and December 2021. Our follow-up window was until 90 days post-ALC designation or death. Setting of discharge and death was determined using admission and discharge dates from multiple databases. We measured palliative care using physician billings, inpatient palliative care records and palliative home care records. We compared the characteristics of ALC patients by 90-day survival status and compared palliative care use across settings of discharge and death.
We included 54 839 ALC patients with a median age of 80 years. Nearly one-fifth (18.4%) of patients died within 90 days. Patients who died were older, had more comorbid conditions and were more likely to be male. Among those who died, 35.1% were never discharged from hospital and 20.3% were discharged but ultimately died in the hospital. The majority of people who died received palliative care following their ALC designation (68.1%).
A significant proportion of patients experiencing delayed discharge die within 3 months, with the majority dying in hospitals despite being identified as ready to be discharged. Future research should examine the adequacy of palliative care provision for this population.
Around 30% of patients with cancer suffer from psychosocial problems requiring formal care; however, these problems are often not identified. Support consultants may play a role in identifying these problems. This study investigates the feasibility of using validated screening instruments to assist support consultants in identifying psychosocial problems.
Prospective observational study focusing on patients visiting support consultants at hospital-affiliated centres for information and support. The feasibility of using screening instruments was assessed based on the percentage of patients willing to participate. For these patients, possible psychosocial problems were objectified, and referral to formal care was assessed.
Out of 227 eligible patients at IntermeZZo, 48 participated (21.1%). At PATIO, over 141 consultations took place and 27 patients participated. Main reason for non-participation was that patients did not feel such a need. The majority showed elevated scores, indicating possible psychosocial problems and around half were referred. Respecting the individual needs of patients and offering them with what benefits them is crucial, including screening instruments does not match their needs nor did support consultants feel it was appropriate in certain cases.
Given the low percentage of questionnaires administered, it does not seem feasible to systematically administer them to patients visiting support consultants.
The purpose of the study was to investigate the collaboration between primary care and palliative care physicians, which is key to providing comprehensive care, and to identify potential difficulties and needs in referring patients to palliative care.
The study was conducted as an online survey, available to primary care and palliative care physicians. The data collected during the survey were used to compare perceptions of different specialty physicians’ perspectives on various aspects regarding palliative care.
The results of the study showed significant differences in the assessment of the palliative care services availability (73% of primary care physicians rate it poorly comparing to high rating of 60% by palliative care specialists), as well as disparities between the declarations regarding the criteria used to decide on referral to palliative care (achieving the best quality of life) and the actual referral of patients (primary care physicians are third on the list of specialists referring patients to palliative care). Despite the need for adequate cooperation between family physicians and palliative care physicians, some difficulties were identified, such as primary care physicians’ lack of knowledge of the patient palliative care referral criteria, and financial as well as personnel and palliative care facilities’ limitations, were identified.
The study confirms the need for better cooperation between primary care physicians and palliative care specialists in Poland. It suggests that educating primary care physicians about palliative care referral criteria can improve the patient referrals accuracy.
The primary objective was to determine if individualised yoga for hospitalised children receiving intensive chemotherapy was associated with less fatigue using the Pediatric Quality of Life Inventory Multidimensional Fatigue Scale (PedsQL MFS) compared with iPad control.
This was a multicentre randomised controlled trial of individualised yoga in paediatric patients aged 8–18 years who were inpatients receiving intensive chemotherapy for leukaemia, lymphoma or haematopoietic cell transplantation. Participants were randomised to yoga or iPad groups; allocated programme was delivered individually by trained yoga instructors 5 days/week for 21 days. The primary outcome was day 21 guardian-reported general fatigue using the PedsQL MFS. Secondary outcomes included day 21 PedsQL sleep/rest and cognitive fatigue, Fatigue Scale and PedsQL Acute Cancer Module, and systemic opioid administration.
The study was closed early for poor accrual when 125/210 planned participants had been enrolled and randomised to yoga (n=62) or iPad (n=63). Guardian-reported PedsQL MFS general fatigue scores on day 21 were not significantly different between groups (adjusted difference 7.2, 95% CI –2.6 to 16.9) in favour of yoga. However, day 21 cognitive fatigue (adjusted difference 9.0, 95% CI 0.9 to 17.1), cognitive problems (adjusted difference 11.2, 95% CI 3.5 to 19.0) and communication (adjusted difference 10.6, 95% CI 0.8 to 20.4) were significantly better in the yoga compared with the iPad group. There were no significant differences in the other secondary outcomes including PedsQL sleep/rest fatigue (adjusted difference 4.9, 95% CI –3.5 to 13.3).
The effect of individualised yoga on general fatigue is uncertain in paediatric patients receiving intensive chemotherapy. However, yoga significantly improved cognitive fatigue and cognitive problems.
Patients needs should be regularly assessed. We aimed to improve assessment and documentation of needs from baseline 25% in June 2022 to 75% in December 2022.
The A3, a structured problem-solving continuous-improvement methodology was used. Fish-bone analysis and pareto charts identified root causes; key drivers and interventions were developed. Interventions included (1) documentation templates, (2) a brochure about services, (3) extra team communication skills training, (4) repository in different languages to help patients identify needs, and (5) weekly review meetings. Reliability and sustainability were ensured through ownership and delegation to team members.
Documentation of needs increased from baseline 25% to 75% within 3 months. This has been sustained at 83% in August 2023. The total number of patients assessed during the project was 1818. Maximum percentage of documentation was 91%. Mean additional time taken to ask and document needs was 2 min.
Identification and documentation of patient needs and prioritisation are feasible in palliative medicine outpatient clinics. This project has directed the team to provide patient-led palliative care interventions.
This study systematically reviewed the literature on the effect of home-based supportive care (HbSC) programmes on the quality of life (QoL) of patients with advanced cancer.
The research question ‘Do home-based supportive care programmes for patients with advanced cancer improve their QoL?’ was addressed. After registering the plan with PROSPERO (CRD42022341237), literature published from 1 January 1990 to 30 May 2023 was searched on PubMed, Embase, Cochrane database, CINAHL and Web of Science, and reviewed for inclusion based on predefined criteria. This review only included trial studies published in English.
Of 5,276 articles identified, 17 studies were judged suitable for inclusion in this review. The components of HbSC programmes included home visits, patient and caregiver education, home nursing, psychotherapy, exercise, telephone consultation, and multidisciplinary team meetings. Nine studies reported improvements in QoL, including social functioning, emotional functioning, and subjective QoL.
HbSC programmes appear to enable the improvement of the QoL of patients with advanced cancer. The area of QoL that shows improvement could vary depending on the HbSC components. More studies that address HbSC programmes are needed to select patients at the proper time and provide suitable programmes for patients to benefit most.
To describe the experience of a Mexican cancer centre in vulvar cancer and the opportunity to incorporate palliative care (PC) during treatment.
A retrospective study of clinical and sociodemographic characteristics of women with vulvar cancer referred to the PC service (PCS) between 2010 and 2021 is reported. Frequencies were estimated, as well as medians and IQRs, accordingly. Referral time and overall survival were estimated using the Kaplan-Meier method.
125 women with vulvar cancer were seen between 2010 and 2021, but only 42% were seen at PCS, mostly polysymptomatic, after several visits to the emergency room. 89% of the patients seen at PCS died at home.
Vulvar cancer is a rare type of cancer, while squamous cell carcinoma is the most frequent type. At the time of referral, almost half of the patients had severe pain, bleeding, malodor, infection and urinary incontinence. Most of these patients lived in poverty, were poorly educated and had multiple surgeries. PC may play an important role in the care of patients with advanced vulvar cancer, relieving the physical and psychological symptoms, avoiding unnecessary hospitalisation and favouring death at home without pain and other symptoms.
Older adults have unique needs and may benefit from additional supportive services through their cancer journey. It can be challenging for older adults to navigate the siloed systems within cancer centres and the community. We aimed to document the use of supportive care services in older adults with a new cancer diagnosis in a public healthcare system.
We used population-based databases in British Columbia to document referrals to supportive care services. Patients aged 70 years and above with a new diagnosis of solid tumour in the year 2015 were included. Supportive care services captured were social work, psychiatry, palliative care, nutrition and home care. Chart review was used to assess visits to the emergency room and extra calls to the cancer centre help line.
2014 patients were included with a median age of 77, 30% had advanced cancer. 459 (22.8%) of patients accessed one or more services through the cancer centre. The most common service used was patient and family counselling (13%). 309 (15.3%) of patients used community home care services. Patients aged 80 years and above were less likely to access supportive care resources (OR 0.57) compared with those 70–79 years. Patients with advanced cancer, those treated at smaller cancer centres, and patients with colorectal, gynaecological and lung cancer were more likely to have received a supportive care referral.
Older adults, particularly those above 80 years, have low rates of supportive care service utilisation. Barriers to access must be explored, in addition to novel ways of holistic care delivery.
To assess the mortality rate and the use of palliative sedation (PS) in an advanced long-standing acute palliative care unit (APCU)
The charts of patients who died and eventually received PS, consecutively admitted to the APCU for 4 years, were reviewed. Patients’ characteristics and symptom intensity were recorded at admission, 3 days before death and the day before death (T0, T-3, T-end, respectively). For patients who were administered midazolam for PS, initial and final doses of drugs, as well as duration of PS until death, were recorded.
One hundred and forty-eight patients died in APCU (8.9%), and 45 of them (30.4%) received PS. Younger patients and those reporting high levels of dyspnoea at T-3 and T-end were more likely to be sedated (p=0.002, p=0.013 and 0.002, respectively). The mean duration of PS was 27.47 hours. Mean initial and final doses of midazolam were 35.45 mg/day (SD 19.7) and 45.57 mg/day (SD 20.6), respectively (p=0.001).
Mortality rate in APCU was very low. As a percentage of the number of deaths, PS rate was similar to that reported in other settings. PS does not seem to accelerate impending death.
The early detection of individuals who require palliative care is essential for the timely initiation of palliative care services. This systematic review and meta-analysis aimed to (1) Identify the screening instruments used by health professionals to promote early identification of patients who may benefit from palliative care; and (2) Assess the psychometric properties and clinical performance of the instruments.
A comprehensive literature search was conducted in PubMed, Embase, CINAHL, Scopus, CNKI and Wanfang from inception to May 2023. We used the COnsensus-based Standards for the Selection of Health Measurement INstruments to assess the methodological quality of the development process for the instruments. The clinical performance of the instruments was assessed by narrative summary or meta-analysis. Subgroup analyses were conducted where necessary. The quality of included studies was assessed using the Newcastle-Ottawa Scale and the Cochrane Collaboration’s risk of bias assessment tool.
We included 31 studies that involved seven instruments. Thirteen studies reported the development and validation process of these instruments and 18 studies related to assessment of clinical performance of these instruments. The content validity of the instruments was doubtful or inadequate because of very low to moderate quality evidence. The pooled sensitivity (Se) ranged from 60.0% to 73.8%, with high heterogeneity (I2 of 88.15% to 99.36%). The pooled specificity (Sp) ranges from 70.4% to 90.2%, with high heterogeneity (I2 of 96.81% to 99.94%). The Supportive and Palliative Care Indicators Tool (SPICT) had better performance in hospitals than in general practice settings (Se=79.8% vs 45.3%, p=0.004; Sp=59.1% vs 97.0%, p=0.000).
The clinical performance of existing instruments in identifying patients with palliative care needs early ranged from poor to reasonable. The SPICT is used most commonly, has better clinical performance than other instruments but performs better in hospital settings than in general practice settings.
To assess the impact of pharmaceutical care on hospital indicators and clinical outcomes of palliative care (PC) patients admitted to a secondary hospital.
A non-randomised clinical trial was carried out in the PC ward of a secondary hospital in São Paulo, Brazil. Pharmaceutical care for all patients aged 18 and above, admitted between October 2021 and March 2022, with stays exceeding 48 hours, was provided. The interventions required were performed in collaboration with healthcare teams, patients and caregivers. Assessments occurred at admission and discharge, using PC performance scales and pharmacotherapy tools, with Research Ethics Committee approval.
Over 6 months, 120 hospitalisations were analysed, primarily involving women (58.9%), averaging 71.0 years, with neoplasm diagnoses (20.5%). A total of 170 drug-related problems were identified in 68.3% of patients. Following assessment, 361 interventions were performed, with a 78.1% acceptance rate, including medication dose adjustments, additions and discontinuations. Addressing unintentional pharmacotherapy discrepancies at admission led to reduced hospital stays (p<0.05). Pharmaceutical interventions also decreased pharmacotherapy complexity (p<0.001), inappropriate medications for the older people (p<0.001) and improved symptom management, such as pain (p<0.05).
Pharmaceutical care services integrated within the multiprofessional health team contributed to reducing drug-related problems associated with polypharmacy as well as improved the management PC symptoms in end-of-life patients, which reduced hospitalisation time.
Palliative care in neurology is a recent specialty to improve the quality of life of patients with severe neurological diseases. This study aims to determine the frequency of neurological inpatients who had indication of palliative care, and evaluate the symptomatology, demographic profile, the need for supportive measures, advance directives for life and medical history of patients in a tertiary hospital in Brazil.
This cross-sectional analytical study evaluated all patients admitted to the neurological semi-intensive care unit (ICU) at Hospital Israelita Albert Einstein with neurological conditions from February through August 2022. The Palliative Performance Scale (weight loss greater than 5% associated with body changes and a negative response to the question: ‘Would you be surprised if the patient died within 1 year?’) was used to indicate palliative care. Patients were divided into three groups: patients with palliative care needs (groupindication), patients without palliative care needs (groupwithout indication) and patients who received at least one assessment of a palliative care team (grouppalliative). Demographic data were analysed using the X2 test for qualitative and Kruskal-Wallis test for quantitative variables.
Of the 198 patients included in the study, 115 (58%) had palliative care needs. Only 6.9% received assessment by the palliative care team, and 9.56% had advance directives in their medical records. Patients in groupindication had a higher prevalence of symptoms, such as fatigue, depression, shortness of breath and lack of appetite, and required more supportive measures, such as oxygen therapy, enteral/parenteral nutrition, admissions at ICU and days in hospital.
Despite the high demand for palliative care in neurology, few patients receive this treatment, resulting in decreased quality of care. Therefore, greater integration and discussion of palliative care in neurology are needed.
Macmillan Cancer Support advocates that a Holistic Needs Assessment (HNA) is carried out at diagnosis and re-evaluated at significant key milestones throughout the patient journey. This now includes acute admission. However, evidence describing the use of HNAs and prevalence of unmet holistic needs in the acute oncology setting is lacking. This project aims to identify the prevalence of unmet holistic needs of patients in an acute oncology setting, and discern the differences in perception of needs between patients and healthcare professionals (HCPs).
Patient and HCP surveys were conducted at 2 time points over a 10-month period. Surveys were co-designed with patient representatives based on the Macmillan Cancer Support ‘concerns checklist’ and used a 5-point Likert scale, rating the importance of each domain to the patient and HCP and the degree to which they felt the clinical team were aware of their needs.
In areas where there was good concordance between patient and HCPs ratings of prevalence, patients still perceived that HCPs were mostly unaware of these needs. Furthermore, HCPs overvalued the importance of advanced care planning and cardiopulmonary resuscitation discussions for patients.
There are discrepancies between patient and HCP perceptions of unmet holistic needs in the acute oncology setting.
Infants with life-limiting conditions are a heterogeneous population. Palliative care for infants is delivered in a diverse range of healthcare settings and by interdisciplinary primary healthcare teams, which may not involve specialist palliative care service consultation.
To synthesise the literature for how palliative care is delivered for infants aged less than 12 months with life-limiting conditions.
An integrative review design. MEDLINE, CINAHL, ProQuest, Cochrane, Joanna Briggs Institute and EMBASE were searched for research published in English language, from 2010 to 2022, and peer reviewed. Critical appraisal was completed for 26 patient case series, 9 qualitative, 5 cross-sectional and 1 quality improvement study. Data analysis involved deductive content analysis and narrative approach to summarise the synthesised results.
37 articles met the eligibility for inclusion. Two models of palliative care delivery were examined, demonstrating differences in care received and experiences of families and health professionals. Health professionals reported lack of palliative care education, challenges for delivering palliative care in intensive care settings and barriers to advance care planning including prognostic uncertainty and transitioning to end-of-life care. Families reported positive experiences with specialist palliative care services and challenges engaging in advance care planning discussions.
There are complex issues surrounding the provision of palliative care for infants. Optimal palliative care should encompass a collaborative and coordinated approach between the primary healthcare teams and specialist palliative care services and prioritisation of palliative care education for nurses and physicians involved in providing palliative care to infants.
The perception of oncologists could impact the attractiveness of the specialty and dialogue between oncologists and other physicians. The aim of the study was to describe and understand the stereotypes and social representation (SR) associated with oncologists among medical students, residents and physicians in France.
This nationwide web-based survey conducted in 2021 was based on hierarchical evocation methods. Qualitative analyses were based on the Reinert method with factorial analyses. Each respondent’s SR was graded from 1 to 5 (from 1: very positive SR to 5: very negative SR).
Oncologists suffer from a rather negative SR. The negative representation was mostly related to difficulties in practising and the proximity with death and end of life. Oncologists were also associated with more positive notions like interdisciplinarity or intellectual complexity. Attendance to an oncology course was associated with a better SR of oncology (p=0.036), whereas having someone in the family practising oncology had a negative impact (p=0.028).
SR of oncologists is rather contrasted. It was positively influenced by attendance to an oncology course, which could be an option to correct stereotypes and update on this rapidly evolving specialty.
Although prior studies show that exposure to early outpatient palliative care (OPC) versus no exposure is associated with improved outcomes at the end of life (EoL) for patients with cancer, few examined the impact of exposure to OPC prior to home-based palliative care (HBPC) on EoL outcomes. This study compares the effect of OPC prior to HBPC versus HBPC alone on EoL outcomes in patients with cancer.
A secondary analysis of data from a trial comparing two models of HBPC was performed on patients with primary cancer diagnoses. Adjusted negative binomial and logistic regression models were used to compare days in acute care and intensive care unit stays in the last 30 days, chemotherapy administration in the last 14 days and in-hospital deaths between patients who received standard-dose (4+ encounters) and low-dose (<4 encounters) OPC plus HBPC versus HBPC alone.
A total of 1187 patients, 483 (40.1%) of whom had OPC+HBPC and 704 (59.3%) who had HBPC alone were included in the analyses. Compared with patients who had HBPC alone, patients who had standard-dose OPC spent fewer days in acute care (4.29 vs 4.19, p=0.04) and fewer days inpatient (3.45 vs 3.09, p=0.03) in the last 30 days of life. No difference was seen in EoL outcomes in patients exposed to low-dose OPC compared with those with HBPC alone. Receipt of hospice after HBPC was strongly associated with improved EoL outcomes.
Future research is needed to examine the modality, timing and intensity of palliative care necessary to effect EoL outcomes.
Efforts to minimise inequity in palliative and end-of-life care (PEoLC) are well-researched. This is frequently explained by differences related to singular factors. The concept of intersectionality recognises that the combination of variables exacerbates disparities.
To identify and review what is known about intersectionality’s impact on experiences of PEoLC, including advance care planning (ACP).
A rapid review with a narrative summary of peer-reviewed articles. Six electronic databases were searched for studies explicitly exploring the role of intersectionality in the experience of PEoLC and ACP for people with life-limiting or terminal illnesses, published in the last 10 years.
Identifying eligible papers was challenging. Of the 3738 papers found, only seven were eligible. Of the seven included papers, four explored the impact of intersectionality on access to and attitudes towards ACP. Two studies involved access to PEoLC and one considered quality of care received in the last year of life.
Understanding intersectionality is crucial for delivering personalised approaches to care and support. The relationship between intersecting factors and end-of-life experiences is complex and there is currently a paucity of studies considering this. The majority of existing literature addresses a narrow range of variables. Additionally, the lack of guidance on the application of intersectionality in research, makes it difficult to compare and synthesise findings. Further diverse action-orientated research is necessary to produce impactful evidence to inform future policy with the aim of reducing inequity in PEoLC.
This study aims to assess whether a simulation-based training programme focusing on palliative care emergencies conducted in a hospice setting could improve the self-reported confidence and competence of nursing staff.
A training programme was developed to enable nursing professionals to practice clinical skills necessary for recognising and managing palliative care emergencies including opioid induced respiratory depression, catastrophic haemorrhage, anaphylaxis, seizure and acute airway obstruction. Eight sessions were conducted. A prequestionnaire and postquestionnaire design was employed to collect data. Participants self-reported their confidence and perceived competence in responding to the relevant scenario before and immediately after simulation training and provided free text feedback. Paired t-tests were applied to assess for a change in competence and confidence scores, while free text responses were analysed thematically.
Findings demonstrated a statistically significant increase in the mean scores for both confidence and competence when comparing pretraining and post-training. Participants valued the opportunity to develop emergency response skills and recognised the value of simulation as an educational tool. Debrief was perceived to be important for maximising learning and facilitating self-reflection.
Participation in simulation-based training focused on palliative care emergencies in a hospice setting improved both confidence and perceived competence of nursing professionals.
Changes in taste is a common symptom in paediatric patients receiving cancer therapies. The primary objective was to describe the prevalence of taste changes longitudinally over a 6-month time frame among paediatric patients with newly diagnosed cancer. Secondary objective was to identify factors associated with taste changes over time.
In this longitudinal, single centre study, we included paediatric patients newly diagnosed with cancer within the previous 8 weeks who were 4–18 years of age. Interviews were conducted once monthly for 6 months. We asked participants about their experience with taste changes, whether potential interventions were successful and whether taste changes influenced eating. Risk factors were evaluated using generalised linear mixed-effects models.
Overall, 60 participants were included. At baseline, 23 (38.3%) participants reported experiencing changes in taste, with the proportion significantly declining over time to 13 (21.7%) at 6 months. The most common specific taste changes were food tasting different, bad or bland. The most common helpful strategies were eating liked foods only, brushing teeth or using mouthwash, drinking more liquids and eating food with strong flavour. Taste change was commonly associated with eating less than usual and reduced enjoyment in eating. Nausea, dry mouth and recent vincristine were independent risk factors for taste changes.
Changes in taste were common within 8 weeks of cancer diagnosis and declined significantly over time. Nausea, dry mouth and recent vincristine were independent risk factors. Future studies should develop and evaluate interventions for managing taste changes in paediatric patients with cancer.
Patients with advanced illness and their family caregivers can be mutually supportive. However, what facilitates and/or restricts supportive relationships between patients and family caregivers in palliative care remains unclear. We aimed to identify key barriers to and facilitators of supportive relationships between people with advanced illness and family caregivers in specialist palliative care.
A qualitative study using grounded theory methodology was conducted. Semistructured interviews were undertaken with 15 patients with advanced illness and 21 family caregivers purposively and theoretically sampled from a large regional specialist palliative care service. Verbatim transcripts were analysed in line with grounded theory coding procedures.
Mutual support was underpinned by mutual concern and understanding. Facilitators of supportive relationships included patients and family caregivers already having a close relationship, caregivers assuming caregiving duties by choice, caregivers feeling competent in a caregiving role, patients valuing caregiver efforts, availability of respite for the caregiver and direct support from healthcare professionals to help both patients and caregivers adjust to advanced illness. Barriers to supportive relationships included absence of support from the wider family, prior mutual conflict between the patient and caregiver, caregivers feeling constrained in their caregiving role and patient and caregiver distress induced by mutual loss.
Multiple factors at both a micro (eg, relationship based) and mesolevel (eg, assistance from services) impact patient and family caregiver ability to support one another in specialist palliative care. Supportive relationships between patients and family caregivers are mediated by feelings pertaining to both control and loss.
In Asian cultures, the belief that full disclosure would harm the patient’s health would lead to non-disclosure. The study aimed to determine whether making patients aware of the extent of their disease will lead to psychological morbidity and poor quality of life (QOL).
This was a cross-sectional study among 195 patients with stage 4 cancer who were aware of their cancer diagnosis at the medical oncology, radiation oncology and palliative care units at an academic cancer centre. Participants were asked about their cancer stage, treatment goal and if they prefer to know their life expectancy. They answered the 14-item Hospital Anxiety and Depression Scale and 27-item validated Functional Assessment of Cancer Therapy-General questionnaires. Determination of the association of patients’ awareness of the extent of the disease with psychological status and QOL was analysed using univariate and multivariate statistics.
About three-fourths of patients with cancer knew they had an advanced disease, but very few were aware that the current treatments they were taking for their cancer would not cure them. No association between awareness of the extent of the disease and psychological morbidity was found. Still, those aware of the advanced disease had significantly higher QOL scores for social well-being.
This study revealed that physicians should not hesitate to communicate the cancer diagnosis and prognosis to patients, as the disclosure was not associated with psychological morbidity. Open communication between physicians, patients and their families on the extent of the disease could empower patients to make informed decisions about their treatment, engage in advance care planning and seek the necessary support.
Physicians and nurse practitioners (NPs) play critical roles in supporting palliative and end-of-life care in the community. We examined healthcare outcomes among patients who received home visits from physicians and NPs in the 90 days before death.
We conducted a retrospective cohort study using linked data of adult home care users in Ontario, Canada, who died between 1 January 2018 and 31 December 2019. Healthcare outcomes included medications for pain and symptom management, emergency department (ED) visits, hospitalisations and a community-based death. We compared the characteristics of and outcomes in decedents who received a home visit from an NP, physician and both to those who did not receive a home visit.
Half (56.9%) of adult decedents in Ontario did not receive a home visit from a provider in the last 90 days of life; 34.5% received at least one visit from a physician, 3.8% from an NP and 4.9% from both. Compared with those without any visits, having at least one home visit reduced the odds of hospitalisation and ED visits, and increased the odds of receiving medications for pain and symptom management and achieving a community-based death. Observed effects were larger in patients who received at least one visit from both.
Beyond home care, receiving home visits from primary care providers near the end of life may be associated with better outcomes that are aligned with patients’ preferences—emphasising the importance of NPs and physicians’ role in supporting people near the end of life.
To explore the experiences of palliative care doctors regarding the clinical impact of ultrasound in specialist palliative care units (SPCUs).
The study adopted a qualitative research design using semistructured interviews and a reflexivity journal. Six participants were recruited through purposive and snowball sampling. Findings were analysed using framework analysis.
Analysis used four predetermined themes: (1) practicalities, (2) clinical indications, (3) impact on patient care and service provision and (4) governance and training. Analysis identified a relationship between procedural confidence and use of ultrasound.
Our study provides information for understanding the current use and limitations of ultrasound in SPCUs. Ultrasound leads to safer practice, especially when performing invasive procedures such as paracentesis. Development of standards around the use of, and training of staff undertaking ultrasound in specialist palliative care, are recommended.
Advance care discussions are a useful communication tools for medical preferences and beneficial for shared decision-making processes in hospital settings. The present study developed the first screening tool for need for advance care planning (ACP).
In phase 1 (n=92), items were evaluated using feasibility analysis and item reduction. In phase 2 (n=201), reduced screening items were analysed for predictive value of need for ACP. Statistical analysis included receiver-operating characteristics analysis (area under the curve>0.80), optimal cut-off based on sensitivity and specificity, interpretation of OR and construct validity using correlation with death anxiety, communication avoidance within families and trust based on the relationship with the treating physician.
Participants in both phases were approximately 60 years old with non-curative prognosis. After item reduction, predictive values of four possible items with good item difficulty and discrimination were compared for mild, moderate and great levels of death anxiety. A two-item combination of I am burdened by thoughts of an unfavourable course of the disease and I am burdened by the feeling of being ill-prepared for the end of life showed best prediction of death anxiety and communication avoidance. Clinical cut-off at sum-score ≥6 was of high sensitivity (95%) and specificity (81%). Previous use of social support and readiness for ACP was related to higher chance of interest in ACP.
Screening for need of ACP is possible with two objective items and one subjective item. Positive screening therefore indicates when to offer ACP discussions and provides routine estimation of ACP need in clinical practice.
The non-oncological population is relatively under-represented among end-of-life (EOL) patients managed by palliative care (PC) services, and the effects of different PC delivery models are understudied in this population.
This retrospective observational study on routinely collected data aimed at evaluating the effects of the extension from workday-only to 24/7 mixed hands-on and advisory home PC service on emergency department (ED) access and emergency medical services (EMS) interventions needed by non-oncological patients during their last 90 days of life, and their probability to die in hospital.
A before-and-after design was adopted comparing preimplementation and postimplementation periods (2018–2019 and 2021–22).
We used a difference-in-differences approach to estimate changes in ED access and EMS intervention rates in the postintervention period through binomial negative regression. The oncological population, always exposed to 24/7 PC, was used as a control. A robust Poisson regression model was adopted to investigate the differences regarding hospital mortality. The analyses were adjusted for age, sex and disease grouping by the system involved. Results were reported as incidence rate ratios (IRRs) and ORs.
A total of 2831 patients were enrolled in the final analysis.
After the implementation of 24/7 home PC, both ED admissions (IRR=0.390, p<0.001) and EMS interventions (IRR=0.413, p<0.001) dropped, as well as the probability to die in hospital (OR=0.321, p<0.001).
The adoption of a 24/7 mixed hands-on and advisory model of home PC could have relevant effects in terms of ED access and EMS use by non-oncological EOL patients under PC.
Cancer-related pain management in advanced stages presents a significant challenge that often requires a multidisciplinary approach. Although advancements in pharmacological and interventional therapies, a considerable number of patients still suffer from refractory pain, leading to unmet clinical needs. This study shares our experience with medical cannabis (MC) as a potential therapy for this specific population of patients with cancer-related refractory pain.
In a cross-sectional study, 252 consecutive refractory cancer-related pain patients (mean age=61.71, SD=14.02, 47.6% males) filled out detailed self-report questionnaires. Of these, 126 patients (55%) were treated with MC and 105 patients (45%) were not.
Most patients received pain management from their oncologist, not a pain specialist. MC was mainly started for pain relief, sleep difficulties and anorexia. About 70% of patients reported subjective improvement from MC, with almost 40% reporting a significant improvement in coping with their illness. Side effects were generally mild, with fatigue and dizziness being the most common (21.78% and 23.46%, respectively). No patient required dedicated medical care for side effects. Of non-users, 65% had tried MC before and stopped due to lack of effectiveness or side effects (39.7% and 34.6%, respectively).
Refractory cancer pain necessitates innovative approaches. This registry highlights that MC can effectively improve symptoms in non-responsive patients, with favourable safety profiles for this vulnerable population.
Appropriate communication between healthcare providers and patients and their families is an essential part of good (palliative) care. We investigated whether implementation of a standardised palliative care pathway (PCP) facilitated communication, that is, aspects of shared decision-making (SDM), including advance care planning (ACP) conversations and satisfaction with care as experienced by bereaved relatives of patients with advanced cancer.
We conducted a prospective preintervention and postintervention study in a hospital. Questionnaires were sent to relatives of patients who died between February 2014 and February 2015 (pre-PCP period) or between November 2015 and November 2016 (post-PCP period). Relatives’ perceptions on communication and satisfaction with care were assessed using parts of the Views of Informal Carers—Evaluation of Services and IN-PATSAT32 Questionnaires.
195 (46%) and 180 (42%) bereaved relatives completed the questionnaire in the pre-PCP and post-PCP period, respectively. The majority of all patients in both the pre-PCP period and the post-PCP period had been told they had an incurable illness (92% and 89%, respectively, p=0.544), mostly in the presence of a relative (88% and 85%, respectively, p=0.865) and had discussed their preferences for end-of-life (EOL) treatment (82% and 76%, respectively, p=0.426). Bereaved relatives were reasonably satisfied with the received hospital care in both groups.
We found no overall effect of the PCP on the communication process and satisfaction with EOL care of bereaved relatives. Before the use of the PCP bereaved relatives already reported favourably about the EOL care provided.
Family caregiver’s involvement in advance care planning (ACP) is essential to provide high-quality end-of-life (EOL) care and to ease the surrogate decision-making burden. However, no systematic review has focused on existing ACP interventions involving patients and their families.
To systematically summarise current ACP interventions involving patients and their families.
Five English and two Chinese databases were searched from inception to September 2022. The eligible studies were experimental studies describing original data. The Joanna Briggs Institute critical appraisal tools assessed the methodological quality. Narrative synthesis was conducted for data analysis.
In total, twenty-eight articles were included. Fifteen studies were randomised controlled trials, and the rest 13 studies were quasi-experimental studies. The data synthesis identified: (1) Key intervention components: strategies to promote ACP, ACP discussion and follow-up, as well as the role of family caregivers; (2) Effects on intended outcomes: interventions have shown benefit on completion of ACP actions, while inconsistent findings were found on the process outcomes and quality of EOL care. In addition, a logic model for patient–caregiver dyadic ACP was created, and the underlying mechanisms of action included well-preparation, open discussion and adequate support for plan/action.
This review provides comprehensive evidence about patient–caregiver dyadic ACP, a promising intervention to better prepare for EOL communication and decision-making. A logic model has been mapped to give a preliminary indication for future implementation. More empirical studies are needed to improve this model and culturally adapt it in a real-world setting.
To assess the prevalence and factors associated with the occurrence of pathological fractures and their impact on the overall survival of patients with bone metastases under palliative care.
An observational retrospective cohort assessment concerning both male and female patients with cancer presenting with bone metastases referred to a palliative care unit. Sociodemographic and clinical data were obtained before and after care unit referral. Patients were followed up until death or the last follow-up (4 years after referral). Logistic regression models and survival curves employing a log-rank test were applied.
A total of 348 patients were included in the study. Most were <65 years (65%) and female (62%), and the most frequent primary tumour site was the breast (40%). The prevalence of pathological fractures was 28%, more frequent in the axial skeleton (49%), with no association with overall patient survival (p=0.348). Patients with breast cancer exhibited a 2.96-fold higher chance (95% CI: 1.80 to 4.86) of developing a fracture compared with other tumours, and not receiving previous radiotherapy increased the chances of fracture occurrence by 5.60-fold (95% CI: 2.46 to 12.77).
A high prevalence of pathological fractures was observed. Presenting with breast cancer and not having undergone previous radiotherapy increase the chances of fracture occurrence, although this is not associated with overall survival in patients under palliative care.
To evaluate whether low serum creatinine levels are associated with poor outcomes in patients with advanced cancer.
This is a secondary analysis of a prospective cohort study. Patients were divided into three groups according to their baseline serum creatinine levels. We performed time-to-event analyses using the Kaplan-Meier method and log-rank tests, and by conducting univariate and multivariate Cox regression analyses.
809 males were divided: male-low group (n=192), male-normal group (n=403) and male-high group (n=214). 808 females were divided: female-low group (n=239), female-normal group (n=389) and female-high group (n=180). Significant differences were observed in survival rates between the high and normal groups in the males and females (both log-rank p<0.001). Significantly higher risks of mortality were observed in the Cox proportional hazard model for the high group than for the normal group in both sexes (adjusted HR 1.292, 95% CI 1.082 to 1.542; adjusted HR 1.316, 95% CI 1.094 to 1.583, respectively). High serum creatinine was associated with shorter survival than normal creatinine, while low serum creatinine was not.
Low serum creatinine levels did not have prognostic abilities in this population.
The aim of this study was to implement training to increase the perineal care knowledge of relatives caring for incontinent palliative care patients and to examine the effectiveness of this training.
This study was designed as a pretest–post-test randomised controlled trial. The study included 84 relatives of patients with incontinence (experimental group, n=42; control group, n=42). The experimental group was given one-on-one face-to-face training on perineal care for patients with incontinence, while the control group was given training through a brochure. Data were collected using a personal information form and the Perineal Care Knowledge Test. The Wilcoxon signed-rank and Mann-Whitney U tests were used for statistical analysis.
The difference between the pretest and post-test scores of the experimental group was found to be statistically significant (p<0.05), while the difference between the pretest and post-test scores of the control group was not significant (p>0.05). The post-test scores of the experimental group were higher than those of the control group (p<0.05).
It was found that one-on-one face-to-face perineal care training was a more effective method for increasing the perineal care knowledge of patients’ relatives than brochures.
The main objective of this study was to assess the prevalence of unmet physical and psychological supportive care needs and associated factors among adult patients with cancer in Southern Ethiopia.
A cross-sectional study was conducted among 321 patients with cancer from 20 June 2022 to 5 August 2022 at Hawassa University Comprehensive Specialized Hospital oncology centre. Simple random sampling technique was used to recruit participants. Data were entered into Epi-Data V.4.6 and were exported to SPSS V.26 for analysis. Logistic regression model was used to describe the association between dependent and independent variables.
The mean age of the study participants was 45±14.27. The prevalence of unmet physical and psychological supportive care needs was 47.3% and 71.1%, respectively. Rural residence ((adjusted OR, AOR 2.73; 95% CI (1.27 to 5.83)) and late-stage cancer ((AOR 2.95; 95% CI 1.02 to 8.52) were factors significantly associated with unmet physical supportive care need. Coexisting illness was associated with both unmet physical and psychological supportive care needs (AOR 2.73; 95% CI 1.27 to 5.83) and (AOR 2.71; 95% CI 1.16 to 6.33), respectively.
Nearly half of the study participants had an unmet physical supportive care need while greater than two-thirds had unmet psychological supportive care need. Residence and late-stage cancer were factors significantly associated with physical unmet supportive care need while coexisting illness was associated with both unmet physical and psychological supportive care needs. Hence, supportive care for patients with cancer should be given an emphasis and incorporated into the cancer treatment protocol.
Our work aims to critically review the use of anticipatory medicines in our inner-city hospice community population and whether our current practices are fit for purpose.
Retrospective audit of community palliative care patients at the end-of-life prescribed anticipatory medicines within a 3-month period. Anticipatory charts and case notes reviewed. Intervention included updating local guidelines, local teaching for medical and non-medical prescribers and sharing results nationally. Eighteen months later, reaudit was performed assessing impact.
In total, 76 patients included. 75/76 (99%) were prescribed an analgesic, antiemetic, antisecretory and anxiolytic. 49/76 (64%) were administered ‘as required’ medications at home. Haloperidol was the favoured antiemetic (88%), costing our hospice ~£2000/month. Case note review highlighted prescribing and administration issues. Reaudit showed a reduction in prescriptions of antisecretory (by 57%) and antiemetic (by 50%), with a wider range of antiemetics (levomepromazine 47%, haloperidol 35%, cyclizine 14%, metoclopramide 3%) indicating individualised prescribing. Those without an antiemetic prescribed did not later require one dispensing.
Our work challenges the orthodoxy that an analgesic, antiemetic, antisecretory and anxiolytic medication must always be included for effective anticipatory prescribing. Antiemetics may not be universally required and individualised prescribing was cost-effective and safe at a local level. Further work evaluating the impacts of altered practice on patients, caregivers, professionals and in other community settings is required.
To characterise trajectories associated with a new team organisation combining critical care and palliative care approaches at home.
We describe the pattern of an emergency response team 24/7 directed to patients with advanced illness presenting a distressing symptom at home, who wanted to stay at home and for whom hospitalisation was considered inappropriate by a shared medical decision-making process in an emergency situation. To assess preliminary impact of this Programme, we conducted a descriptive study on all consecutive patients receiving this intervention during the first year (between 6 September 2021 and 5 September 2022).
Among the 352 patients included, main advanced illnesses were cancer (41%), dementia (28%) or chronic organ failure (10%). They were critically ill with acute failures: respiratory (52%), neurological (48%) or circulatory (20%). Main distressing symptoms were breathlessness (43%) and pain (17%). Median response time from call to home-visit (IQR) was 140 (90–265) min. Median length of follow-up (IQR) was 4 (2–7) days. Main outcomes were death at home (72%), improvement (19%) or hospitalisation (9%) including three visits to emergency department (1%).
Our study supports that shared decision-making process and urgent care at home are feasible and might prevent undesired hospitalisations.
Nutritional support (NS) offered through oral nutritional supplements (ONS) or enteral nutrition (EN) and its impact on quality of life (QoL) is a controversial topic in patients with cancer receiving palliative care (PC).
To compare the QoL of patients without and with use of NS, including ONS or EN in patients with incurable cancer receiving PC.
Cross-sectional analysis with patients that were evaluated at PC Unit between June 2021 and February 2023. QoL was assessed using the Quality of Life Questionnaire Core 15. Patients were classified into three groups according to the NS: ONS (n=72; 33%), EN (n=61; 28%) and control group (CG) (n=87; 39%), the last one being formed by patients not using NS. Adjusted logistic regression models were used to verify the association of the domains of QoL with the type of NS.
A total of 220 patients were included, with a median age of 64 (58–70) years, predominantly male (54.1%). The EN group had worse scores in physical function when compared with the ONS group (p=0.037) and appetite loss when compared with the CG (p=0.013). The ONS (OR: 2.70; 95% CI 1.32 to 5.49) and EN groups (OR: 2.61; 95% CI 1.24 to 5.49) were independently associated with a higher chance of presenting appetite loss in relation to the CG.
In general, there was no difference in the QoL of patients using NS when compared with patients not using NS. However, patients using NS have more chance of having appetite loss.
To identify and investigate different cohorts of cancer patients’ use of physical rehabilitation and specialised palliative care (SPC) services, focusing on patients with incurable cancer and the impact of social vulnerability.
The sample originated from patients diagnosed during 2013–2018 and alive 1 January 2015. Use of physical rehabilitation and/or SPC units were identified from contacts registered in population-based administrative databases. Competing-risks regression models were applied to investigate disparities with regard to social vulnerability, disease duration, gender and age.
A total of 101 268 patients with cancer were included and 60 125 survived longer than 3 years after their diagnosis. Among the 41 143 patients, who died from cancer, 66%, survived less than 1 year, 23% survived from 1 to 2 years and 11% survived from 2 to 3 years. Contacts regarding physical rehabilitation services appeared in the entire cancer trajectory, whereas contacts regarding SPC showed a steep increase as time drew closer to death. The largest disparity was related to disease duration. Socially vulnerable patients had less contact with SPC, while a larger proportion of the socially vulnerable cancer survivors used rehabilitation, compared with the non-vulnerable patients.
This study provides a previously unseen detailed overview of the use of physical rehabilitation and/or SPC among patients with incurable cancer. The services appeared to overlap at a group level in the cancer trajectory, emphasising the importance of awareness with regard to coordination and combination of the services. Disparities between socially vulnerable or non-vulnerable patients were identified.
Investigate trends in where patients died of anal cancer in the USA.
Retrospective cohort study using the US National Center for Health Statistics Wide-Ranging ONline Data for Epidemiologic Research platform from 2003 to 2020; all patients with death certificates listing anal cancer as the underlying cause of death in the USA. Main outcome measure of location of patient death: inpatient facility, home, hospice, nursing home/long-term care facility and other.
There were a total of 16 296 deaths with anal cancer as the underlying diagnosis during the study period. The crude rate increased from 0.191 per 100 000 deaths in 2003 to 0.453 per 100 000 deaths in 2020. Over the study period, 22.4% of patient deaths occurred in inpatient facilities, 44.9% at home, 12.2% at hospice facilities and 13.1% at nursing homes/long-term care facilities. The percentage of deaths occurring in hospice facilities increased from 1.0% to 13.3% during the study period. Deaths at home also increased from 42.7% in 2003 to 55.8% in 2020. Meanwhile, inpatient deaths decreased from 33.5% in 2003 to 14.4% in 2020.
There has been a significant increase in the proportion of patients with anal cancer dying at home or hospice from 2003 to 2020.
To report the on-call activity of a well-established home care programme.
The charts of consecutive phone calls recorded in the weekend or public holidays were reviewed.
The principal reason to call were based on caregivers’ uncertainty, for the need of information or just to be reassured. The other more frequent reason to call was related to technical problems with peripheral intravenous central catheters.
An integrated system of ‘on call’ allows to select the interventions, covering most of the patients’ needs.
To investigate the efficacy and safety of short subcutaneous infusions (SSCIs) for refractory symptoms in the palliative setting.
A retrospective chart review of SSCIs in a single palliative care centre over an 18-month period. All clinical notes, medication administration records and infusion monitoring documentation were examined to ascertain therapeutic aim, efficacy and tolerability.
111 patients received one or more SSCIs, 28 in the community and 83 in the inpatient hospice (21% of all admissions). SSCIs were used for a wide variety of reasons including loading doses (to achieve steady state and, thus, symptom relief, sooner), as required doses (for medications too irritant to give as bolus SC injections) and regular maintenance doses (where continuous subcutaneous infusion (CSCI), were unnecessary). 84 single drug SSCIs types and 51 admixtures SSCIs types (2 or more medications) were given. One infusion was poorly absorbed, but SSCIs were otherwise well tolerated.
SSCIs appear to be a promising additional option for administering medicines that are too irritant or large in volume for SC bolus injection. For medications with longer half-lives (eg, phenobarbital, valproate, levetiracetam), SSCI loading doses would be expected to achieve steady state and, thus, symptom relief, sooner than CSCIs alone.
Assisted dying has been legally available in Oregon in the USA for 25 years, since when official reports have been published each year detailing the number of people who have used this option as well as sociodemographic and information about the process. The aim of this study was to examine changes over time in these data.
We collated and reviewed data on 2454 assisted deaths included in annual reports on assisted deaths published by the Oregon Health Authority from 1998 to 2022. Descriptive statistics were used to describe time trends.
The number of assisted deaths in Oregon increased from 16 in 1998 to 278 in 2022. Over this time, patients’ health funding status changed from predominantly private (65%) to predominantly government support (79.5%), and there was an increase in patients feeling a burden and describing financial concerns as reasons for choosing an assisted death. There has been a reduction in the length of the physician–patient relationship from 18 weeks in 2010 to 5 weeks in 2022, and the proportion referred for psychiatric assessment remains low (1%). Data are frequently missing, particularly around complications.
The number and characteristics of people accessing assisted deaths, and the process, have changed since data collection started in 1998. Prospective studies are needed to examine the relationship between socioeconomic factors and the desire for an assisted death in Oregon.
Although early palliative care (EPC) is beneficial in acute myeloid leukaemia, little is known about EPC value in multiple myeloma (MM). We compared quality indicators for palliative and end-of-life (EOL) care in patients with MM receiving EPC with those of patients who received usual haematological care (UHC).
This observational, retrospective study was based on 290 consecutive patients with MM. The following indicators were abstracted: providing psychological support, assessing/managing pain, discussing goals of care, promoting advance care plan, accessing home care services; no anti-MM treatment within 14 and 30 days and hospice length of stay >7 days before death; no cardiopulmonary resuscitation, no intubation, <2 hospitalisations and emergency department visits within 30 days before death. Comparisons were performed using unadjusted and confounder-adjusted regression models.
55 patients received EPC and 231 UHC. Compared with UHC patients, EPC patients had a significantly higher number of quality indicators of care (mean 2.62±1.25 vs 1.12±0.95; p<0.0001)); a significant reduction of pain intensity over time (p<0.01) and a trend towards reduced aggressiveness at EOL, with the same survival (5.3 vs 5.46 years; p=0.74)).
Our data support the value of integrating EPC into MM routine practice and lay the groundwork for future prospective comparative studies.
The healthcare level has been greatly affected by the COVID-19 pandemic compared with before the outbreak. This study aimed to review the impact of COVID-19 on the screening and diagnosis of prostate cancer (PCa).
The current study was designed according to Preferred Reporting Items for Systematic Reviews and Meta-Analyses 2020. The keywords used to perform the search strategy were COVID-19 and prostate neoplasms. The four primary electronic databases comprising PubMed/MEDLINE, Web of Science, Scopus and Embase were searched until 1 September 2022. After screening and selecting studies through the EndNote software, data were extracted from each included study by two independent authors. All studies were evaluated according to Newcastle–Ottawa Scale quality assessment tool.
As a result, 40 studies were included, categorised into two subjects. The majority of studies indicated a significant decrease in screening prostate-specific antibody tests during the COVID-19 pandemic compared with the pre-pandemic period, leading to delays in cancer diagnosis. The decrease in the number of diagnosed cases with low/intermediate stages to some extent was more than those with advanced stages. The PCa screening and diagnosis reduction ranged from nearly 0% to 78% and from 4.1% to 71.7%, respectively.
Our findings showed that during the COVID-19 lockdown, delays in PCa screening tests and diagnoses led to the negative health effects on patients with PCa. Thus, it is highly recommended performing regular cancer screening to reduce the impact of the COVID-19 lockdown.
CRD42021291656.
Drug dependence is becoming increasingly common and meeting palliative care patients with substance use disorders is inevitable. However, data on substance use in these patients are lacking. This study aims to evaluate the prevalence of drug dependence in palliative care patients with advanced cancer and correlate with symptom distress and opioid use.
Palliative care patients with advanced cancer interested in participation in a medicinal cannabis trial were required to complete Alcohol, Smoking and Substance Involvement Screening Test (ASSIST), Edmonton Symptom Assessment Scale (ESAS) and record of concomitant medications including baseline opioid use as part of the eligibility screen.
Of the 182 participants, 167 (92%) reported lifetime alcohol and 132/182 (73%) lifetime tobacco use. No participant reached the threshold criteria for high risk of drug dependence with majority being low risk. There was no correlation between ASSIST score, ESAS and oral morphine equivalent.
This study identified alcohol and tobacco as the main substances used in this group of patients and that most were of very low risk for drug dependence. This suggests routine drug screening for palliative care patient may not be justified, but the high possibility of questionnaire bias is acknowledged.
Virtual reality (VR) might improve symptom management, but there is limited evidence regarding VR in palliative care. We evaluated the feasibility of VR and impact on anxiety and pain for patients in a hospital palliative care consultation service.
Patients referred to a hospital specialist palliative care team, with anxiety or pain, were offered a VR intervention (a short audiovisual experience). Participants rated anxiety and pain on a 0–10 Likert severity scale pre intervention/post intervention and completed an evaluation form. Change in symptom scores was analysed by parametric statistics.
28 participants used VR a total of 42 times with no adverse events. Mean pain score reduced by 29% from 4.10 (SD=2.71) pre intervention to 2.93 (SD=2.45) post intervention (t(27)=5.150, p<0.001). Mean anxiety scores reduced by 40% from 4.43 (SD=2.56) to 2.65 (SD=2.24) (t(27)=5.058, p<0.001). Patients rated the experience on average 4.75/5 and all would recommend use to a friend. VR was described as absorbing and relaxing.
VR may improve anxiety and pain and was acceptable in this setting. Large-scale evaluation will generate important data on feasibility and implementation.
Hospital admission (HA) in cancer history is a common, repeated and frequently unplanned event. The emergency departments (EDs) and the oncological outpatient service (OOS) are the ordinary way of entry. We studied the reasons of admission, pathways of access and discharge and prognostic factors in a population of admitted patients with cancer.
The health records of the admitted patients in the oncological ward of a referral hospital in a 6-month period were retrieved and analysed. The characteristics of those admitted in the last 3 months of life were compared with the other group.
Among the 147 HA, 79.5% were unplanned, 48.9% passing through the ED and 30.6% through the OOS; 56.5% were due to cancer-related symptoms; 50.3% occurred in the last 3 months of life. Median overall survival was 90 days (95% IC 53.1–126.9). Independent prognostic factors for survival were: being admitted for symptoms, referral through the ED and not being discharged at home.
Hospital is a turning point in the cancer care pathway. Patients needing HA have a dismal prognosis, half of them being in the last 3 months of life. This group can be identified using universally available variables.
The need for public education on palliative care has been widely argued for. To develop effective educational strategies, a stronger evidence base is needed on what exactly is known and unknown about palliative care as well as what the differences are between subgroups.
We conducted a cross-sectional population-based survey. Mail questionnaires were sent to a random sample of 4400 citizens (aged ≥16 years) within 4 municipalities in Flanders, Belgium. The Palliative Care Knowledge Scale (PaCKS) was used to measure knowledge. Associations between knowledge and sociodemographics and various experiential factors were tested, as well as the congruence between actual and self-perceived knowledge scores.
Response was obtained from 2008 (45.6%) citizens. The mean PaCKS score was 7.87 (SD 3.41; range 0–13) with the highest proportion (84.7%) correctly answering that palliative care is not specifically for older adults and the lowest (32.1%) correctly answering that improving the ability to participate in daily life is a palliative care goal. Being aged between 30 and 59, non-religious, more highly educated, having professional healthcare experience and knowing palliative care through personal experience were significantly associated with higher knowledge, while sex and informal caregiving experience were not. 52.4% self-perceived their knowledge as lower than it actually was.
While the general public seems to be familiar with some basic concepts of palliative care, several key aspects remain unknown. Educational strategies, with suggested potential for community-based and experience-based approaches, may need to focus specifically on these aspects and not just on the broader palliative care concept.
Parents have unique experience of caring for their child with a life-limiting illness and significant insight into the experience of advance care planning. However, little is known about how they experience and manage this process. Our objective was to understand parents’ experience of advance care planning for their child.
Data collected through semistructured interviews and documents using a constructivist and situational grounded theory approach. Parents with experience of end-of-life decisions or advance care planning for a child (age 0–17 years) with a life-limiting condition or life-threatening condition.
13 parents participated; 11 interviews were undertaken with analysis of 9 advance care plans. Parents were interviewed separately (n=9) or together (n=2).
Overarching and inter-related categories, realisation, reconciling multiple tensions and building confidence and asserting control explained the actions and processes of parents’ experience of advance care planning. The arising theory, reconstructing meaning through advance care planning, describes how the process of advance care planning, enables parents to make ‘good’ decisions in complex medical situations and despite the emotional distress, has therapeutic value.
This study confirms parents want to engage in advance care planning, use the process to continuously reorientate their values alongside treatment decisions and that offers a therapeutic value not previously recognised. This requires healthcare professionals to reframe their approach to advance care planning conversations valuing parents’ voices and desire for a sense of control and empowering them to make future decisions that offer hope and build resilience to face the future death of their child.
Delirium, a neurocognitive disorder, typically occurs in older patients and those with advanced cancer. Although there have been numerous reports on delirium in patients with cancer in various conditions, there are no reports that specifically focus on patients with musculoskeletal tumours. This prospective study aimed to investigate the incidence, risk factors and prognostic implications of delirium in patients with musculoskeletal tumours.
In this single institutional study, 148 patients with musculoskeletal oncology were enrolled. The estimated risk factors included age, sex, alcohol abuse, performance status (PS), dietary status, admission route, tumour malignancy, oncological stage and blood test results. The significance of delirium in survival was also examined.
Only 18 patients with malignant tumours had delirium (12.2%). Based on univariate analysis, older age, poor PS, dietary status, admission from another hospital, malignant tumour, carcinoma rather than sarcoma, anaemia and some laboratory abnormalities were found to be significant risk factors for delirium. Multivariate analysis showed that poor PS was significantly correlated with delirium. Additionally, delirium was significantly correlated with poor survival.
The incidence of delirium among patients with musculoskeletal tumours was 12.2% and was observed only in patients with malignant tumours. PS is a significant risk factor for delirium. Delirium is correlated with poor prognosis.
This study examined the adherence rate of recommendations of a palliative consultation team (PCT) and a geriatric consultation team (GCT). Secondary aims were to investigate which factors and/or recommendation characteristics influence adherence rates.
This retrospective cohort study was performed in the Maastricht University Medical Center+ in the Netherlands and included hospitalised patients who received a consultation by the PCT or the GCT. Baseline data on consultations were collected for the total population and for the GCT and PCT separately. The adherence rate of the recommendations was evaluated by checking evidence of implementation. The nature of recommendations given (solicited or unsolicited) was documented per domain (somatic, psychological/cognitive, social, spiritual, functional, and existential). The association with adherence was evaluated for solicited and unsolicited recommendations separately. Exploration of potentially associated factors was performed using OpenEpi.
Overall, 507 consultations of individual patients were performed (n=131) by the GCT and (n=376) by the PCT. Most recommendations given were solicited (865/1201=72%). Over 80% of both solicited and unsolicited recommendations were implemented in the majority of domains. No potentially modifiable factors associated with the adherence of the advices were found.
The overall adherence rate of the GCT and PCT consultations was high. In addition, in certain domains, many recommendations were unsolicited. However, also the majority of these recommendations were implemented.
This study explores the relationship between end-of-life care costs and place of death across different health and social care sectors.
We used a linked local government and health data of East London residents (n=4661) aged 50 or over, deceased between 2016 and 2020. Individuals who died in hospital were matched to those who died elsewhere according to a wide range of demographic, socioeconomic and health factors. We reported mean healthcare costs and 95% CIs by care sectors over the 12-month period before death. Subgroup analyses were conducted to investigate if the role of place of death differs according to long-term conditions and age.
We found that mean difference in total cost between hospital and non-hospital decedents was £4565 (95% CI £3132 to £6046). Hospital decedents were associated with higher hospital cost (£5196, £4499 to £5905), higher mental healthcare cost (£283, £78 to £892) and lower social care cost (–£838, –£1,209 to –£472), compared with individuals who died elsewhere. Subgroup analysis shows that the association between place of death and healthcare costs differs by age and long-term conditions, including cancer, mental health and cardiovascular diseases.
This study suggests that trajectories of end-of-life healthcare costs vary by place of death in a differential way across health and social care sectors. High hospital burden for cancer patients may be alleviated by strengthening healthcare provision in less cost-intensive settings, such as community and social care.
Our study examines how non-small cell lung cancer (NSCLC) survivors undergoing immunotherapy can experience reduced anxiety and psychological distress, improved quality of life (QOL) and increased immunotherapy efficacy.
133 men and 20 women with NSCLCs were enrolled. In a randomised controlled trial involving a care as usual group (CG) and a music therapy group (MTG), the researchers employed various tools such as the Self-Rating Anxiety Scale, Symptom Distress Thermometer, Functional Assessment of Cancer Therapy-General version 4 and Response Evaluation Criteria in Solid Tumours. These measures were used to evaluate anxiety, psychological distress, QOL and immunotherapy efficacy in patients undergoing immunotherapy before and after patients’ completion.
After the intervention, patients in the MTG demonstrated a noteworthy reduction in anxiety (t=6.272, p≤0.001) and distress (t=10.111, p≤0.001), as well as an increase in QOL (t=–7.649, p≤0.001). Moreover, compared with patients in the CG, those in the MTG demonstrated a remarkable drop in anxiety (t=–4.72, p≤0.001) and distress (t=–7.29, p≤0.001), a significant increase in QOL (t=5.363, p≤0.001) and a significant improvement in immunotherapy efficacy (z=–2.18, p≤0.05) after the intervention.
The use of individual music therapy sessions appears to be effective in reducing anxiety and distress, while also increasing QOL and immunotherapy efficacy in patients with NSCLCs undergoing immunotherapy.
Facial airflow from a hand-held fan may reduce breathlessness severity and hasten postexertion recovery. Data from randomised controlled trials are limited and the optimal airflow speed remains unknown. We aimed to determine the effect of different airflow speeds on recovery from exercise-induced breathlessness.
A prospective, randomised, cross-over design. Ten healthy participants (seven male; mean age 29±4 years; height 175±9 cm; body mass 76.9±14.1 kg) completed six bouts of 4 min of exercise. During the first 5 min of a 20 min recovery phase, participants received one of five airflow speeds by holding a fan ~15 cm from their face, or no fan control, administered in random order. Fan A had an internal blade, and fan B had an external blade. Breathlessness was measured using a numerical rating scale (NRS) at minute intervals for the first 10 min, and facial skin temperature was recorded using a thermal imaging camera (immediately postexertion and 5 min recovery).
Nine participants completed the trial. A significant main effect for airflow speed (p=0.016, p2=0.285) and interaction effect for airflow speed over time (p=0.008, p2=0.167) suggest that the airflow speed modifies breathlessness during recovery from exercise. Fan speeds of 1.7 m/s or greater increased the speed of recovery from breathlessness compared with control (p<0.05) with the highest airflow speeds (2.5 m/s and 3.3 m/s) giving greatest facial cooling.
Higher airflow rates (1.7 m/s or greater) reduced self-reported recovery times from exercise-induced breathlessness and reduced facial temperature .
Patients with lung cancer experience high rates of hospitalisation, mainly due to the high risk of complications that emerge during the natural history of the disease. We designed a retrospective, single-centre, observational study aimed at defining the clinical predictors of 30-day mortality in hospitalised patients with lung cancer.
Clinical records from the first admission of patients with lung cancer to the oncology ward of the University Hospital of Parma from 1 January 2017 to 1 January 2022 were collected.
251 consecutive patients were enrolled at the time of data cut-off. In the univariate analysis, baseline clinical predictors of 30-day mortality were Eastern Cooperative Oncology Group performance status (ECOG PS) (≥2 vs 0–1: 27.5% vs 14.8%, p=0.028), high Blaylock Risk Assessment Screening Score (BRASS) (high vs intermediate-low: 34.3% vs 11.9%, p<0.001), presence of pain (yes vs no: 24.4% vs 11.7%, p=0.009), number of metastatic sites (≥3 vs <3: 26.5% vs 13.4%, p=0.017) and presence of bone metastases (yes vs no: 29.0% vs 10.8%, p=0.001). In the multivariate analysis, high BRASS remained significantly associated with increased 30-day mortality (high vs intermediate-low; OR 2.87, 95% CI 1.21 to 6.78, p=0.016).
Our results suggest that baseline poor ECOG PS, high BRASS, presence of pain, high tumour burden and presence of bone metastases could be used as clinical predictors of 30-day mortality in hospitalised patients with lung cancer. In particular, the BRASS scale should be used as a simple tool to predict 30-day mortality in hospitalised patients with lung cancer.
The COVID-19 pandemic challenged palliative care (PC) services globally. We studied the ways healthcare professionals (HCPs) working in faith-based hospitals (FBHs) experienced and adapted care through the pandemic, and how this impacted patients with PC needs.
In-depth interviews were conducted with HCPs from FBHs serving rural and urban population across India. Thematic analysis was conducted.
A total of 10 in-depth interviews were conducted during the COVID-19 pandemic, first wave (4), second wave (4) and between them (2). HCPs described fear and stigma in the community early in the pandemic. Migrant workers struggled, many local health services closed and cancer care was severely affected. Access and availability of healthcare services was better during the second wave. During both waves, FBHs provided care for non-COVID patients, earning community appreciation. For HCPs, the first wave entailed preparation and training; the second wave was frightening with scarcity of hospital beds, oxygen and many deaths. Eight of the 10 FBHs provided COVID-19 care. PC teams adapted services providing teleconsultations, triaging home visits, delivering medications, food at home, doing online teaching for adolescents, raising funds. Strengths of FBHs were dedicated teamwork, staff care, quick response and adaptations to community needs, building on established community relationship.
FBHs remained open and continued providing consistent, good quality, person-centred care during the pandemic. Challenges were overcome innovatively using novel approaches, often achieving good outcomes despite limited resources. By defining and redefining quality using a PC lens, FBHs strengthened patient care services.
(1) To operationalise our previously published definition of neonatal serious illness by applying it to a patient cohort and (2) to evaluate timing of palliative care consultation, goals of care discussions and meeting serious illness criteria.
This was a retrospective chart review. Inborn neonates delivered between January 2006 and December 2020 who died prior to neonatal intensive care unit discharge were identified through EPIC query. Kruskal-Wallis and Mann-Whitney-U tests were used to compare time intervals relating to transition to serious illness across causes of death and other factors. 2 tests were used to examine frequency of goals of care conversations by factors.
Eighty-eight per cent of patients met criteria for neonatal serious illness within 48 hours of life. There were no significant differences in transition to serious illness between preterm and term infants. Time to identification of serious illness varied significantly by cause of death. Palliative care was consulted for 5.7% of patients.
All patients met criteria for serious illness early in life based on our definition. This definition may be useful for identifying neonates with serious illness in time to provide support. Additional work is needed to apply this definition prospectively to explore its utility for clinical care and research.
Engaging in advance care planning can be emotionally challenging, but gamification and technology are suggested as a potential solution.
Present the development stages of a mobile app prototype to improve quality of life for patients in palliative care.
The study started with a comprehensive literature review to establish a foundation. Subsequently, interviews were conducted to validate the proposed features of the mobile application. Following the development phase, usability tests were conducted to evaluate the overall usability of the mobile application. Furthermore, an oral questionnaire was administered to understand user satisfaction about the implemented features.
A three-phase testing approach was employed based on the chosen user-centred design methodology to obtain the results. Three iterations were conducted, with improvements being made based on feedback and tested in subsequent phases. Despite the added complexity arising from the health status of patients in palliative care, the usability tests and implemented features received positive feedback from both patients and healthcare providers.
The research findings have demonstrated the potential of digitisation in enhancing the quality of life for patients in palliative care. This was achieved through the implementation of patient-centred design, personalised care, the inclusion of social chatrooms and facilitating end-of-life discussions.
The goal of this scoping review is to identify the most commonly used models of palliative care delivery in acute care settings, their advantages and disadvantages, and to review existent research evidence in support of each model.
We conducted an extensive search using EMBASE, Medline, CINAHL and Pubmed, using various combinations of terms relating to models in palliative care and acute care settings. Data were analysed using tabular summaries and content analysis.
41 articles were analysed. Four models were identified: primary, consultative, integrative and hybrid models of palliative care. All four models have varying characteristics in terms of access to specialist palliative care; fragmentation of healthcare services; therapeutic relationships between patients and providers; optimal usage of scarce palliative care resources; timing of provision of palliative care; communication and collaboration between providers and clarity of provider roles. Moreover, all four models have different patient outcomes and healthcare utilisation. Gaps in research limit the ability to determine what model of care is more applicable in an acute care setting.
No ideal model of care was identified. Each model had its advantages and disadvantages. Future work is needed to investigate which setting one model may be better than the other.
To describe the timing of involvement of various physician specialties over the last year of life across different levels of primary care physician continuity for differing causes of death.
We conducted a retrospective cohort study of adults who died in Ontario, Canada, between 1 January 2013 and 31 December 2018, using linked population level health administrative data. Outcomes were median days between death and first and last outpatient palliative care specialist encounter, last outpatient encounter with other specialists and with the usual primary care physician. These were calculated by tertile of score on the Usual Provider Continuity Index, defined as the proportion of outpatient physician encounters with the patient’s primary care physician.
Patients’ (n=395 839) mean age at death was 76 years. With increasing category of usual primary care physician continuity, a larger proportion were palliative care generalists, palliative care specialist involvement decreased in duration and was concentrated closer to death, the primary care physician was involved closer to death, and other specialist physicians ceased involvement earlier. For patients with cancer, palliative care specialist involvement was longer than for other patients.
Compared with patients with lower continuity, those with higher usual provider continuity were more likely to have a primary care physician involved closer to death providing generalist palliative care.
Primary objective was to describe the cumulative incidence of severe hypoglycaemia in paediatric patients with cancer. Secondary objectives were to determine risk factors for severe hypoglycaemia and to describe its clinical course and management.
In this single institution retrospective study, for the cumulative incidence cohort, we included cancer diagnosis and hypoglycaemia episodes between June 2018 and November 2021. For the chart review cohort, we included cancer diagnosis January 2009–November 2021 and hypoglycaemia episodes June 2018–November 2021.
There were 1237 cancer diagnoses and 142 patients with severe hypoglycaemia in the cumulative incidence cohort. Cumulative incidence at 6 months after cancer diagnosis was 9.4% (95% CI 7.7% to 11.0%). Severe hypoglycaemia incidence significantly increased over time (r=0.77, p=0.004). Independent risk factors were age at diagnosis (HR 0.88, 95% CI 0.85 to 0.91); acute lymphoblastic leukaemia (HR 3.06, 95% CI 2.19 to 4.29) and relapse (HR 9.54, 95% CI 3.83 to 23.76). There were 4672 cancer diagnoses and 267 episodes of severe hypoglycaemia in the chart review cohort.
The cumulative incidence of severe hypoglycaemia 6 months after cancer diagnosis was 9.4%. Severe hypoglycaemia increased over time. Younger patients, those with acute lymphoblastic leukaemia and those with a history of disease relapse, were at higher risk of severe hypoglycaemia.
To systematically gather information on the professional team members, services provided, funding sources and population served for all consultant-led specialised paediatric palliative care (SPPC) teams in the UK.
Two-part online survey.
Survey 1: All 17 medical leads from hospital-based or hospice-based SPPC teams responded to the survey (100% response rate).
Only six services met the NICE guidance for minimum SPPC team.
All services reported providing symptom management, specialist nursing care, end-of-life planning and care, and supporting discharges and transfers to home or hospice for the child’s final days-hours. Most services also provided care coordination (n=14), bereavement support (n=13), clinical psychology (n=10) and social work-welfare support (n=9). Thirteen had one or more posts partially or fully funded by a charity.
Survey 2: Nine finance leads provided detailed resource/funding information, finding a range of statutory and charity funding sources. Only one of the National Health Service (NHS)-based services fully funded by the NHS.
One-third of services met the minimum criteria of professional team as defined by NICE. Most services relied on charity funding to fund part or all of one professional post and only one NHS-based service received all its funding directly from the NHS.
Advance care planning (ACP) is the process of documenting a person’s preference for medical treatment in the event of future deterioration. This audit aimed to improve discussion and documentation of ACP in patients who die during a hospital admission.
We performed a clinical audit in 2021 of inpatients at a tertiary hospital in Sydney, Australia to evaluate the benefit of multimodal interventions to improve ACP compared with previous audits from 2016 and 2011.
In 2021, 97% of audited patients had a documented ACP prior to death compared with 80% in the 2016 audit. The completion of NFR documentation on admission in 2016 was 33%, while in 2021 65% of ACPs were completed within 24 hours of admission.
In 2021, 94% of patients had a paper resuscitation form filled; however, identification stickers, which are associated with risk of error, were used in 64%; and 25% of forms were only partially completed. Palliative care was consulted for 44% of patients prior to death; 33% on the day of or prior to death.
Improvement in prevalence and timing of ACP prior to death is seen in the postintervention audit. A repeat audit in 5 years will be conducted, with interventions focused on improving documentation of ACP.
The legal landscape surrounding end-of-life care in France is subject to frequent changes. A proposed law to legalise euthanasia in April 2021 has raised questions about the role of physicians. If enacted, oncologists would likely be among the first professionals impacted, as data from countries with legalised euthanasia reveal that patients with cancer constitute the majority of those seeking this option. Currently, little is known about the attitudes of French oncologists towards euthanasia. Therefore, the aim of this study was to explore the position of cancer physicians on euthanasia and their experiences in dealing with patients who request it.
We conducted individual interviews with 24 cancer specialists (oncologists, radiotherapists and haematologists) at the Centre Léon Bérard in Lyon between August and October 2021. After full transcription, data were analysed thematically and for content. Data triangulation was used to establish the truthworthiness of the findings by two external researchers.
Most cancer specialists in our study were opposed to legalising euthanasia, citing concerns about the societal, medical and ethical implications of the practice. They refused physician-assisted suicide based on their ethical duty to preserve life, avoid harm and uphold the Hippocratic Oath. Patient requests for euthanasia were rare. Surprisingly, over a quarter of the physicians interviewed did not rule out receiving active assistance in dying themselves in cases of unbearable or hopeless situations.
This study highlights the complex and diverse attitudes of cancer physicians towards euthanasia and physician-assisted suicide, reflecting the challenges of integrating individual and collective perspectives on end-of-life issues.
To describe variations in the receipt of potentially inappropriate interventions in the last 100 days of life of patients with cancer according to patient characteristics and cancer site.
We conducted a population-based retrospective cohort study of cancer decedents in Ontario, Canada who died between 1 January 2013 and 31 December 2018. Potentially inappropriate interventions, including chemotherapy, major surgery, intensive care unit admission, cardiopulmonary resuscitation, defibrillation, dialysis, percutaneous coronary intervention, mechanical ventilation, feeding tube placement, blood transfusion and bronchoscopy, were captured via hospital discharge records. We used Poisson regression to examine associations between interventions and decedent age, sex, rurality, income and cancer site.
Among 151 618 decedents, 81.3% received at least one intervention, and 21.4% received 3+ different interventions. Older patients (age 95–105 years vs 19–44 years, rate ratio (RR) 0.36, 95% CI 0.34 to 0.38) and women (RR 0.94, 95% CI 0.93 to 0.94) had lower intervention rates. Rural patients (RR 1.09, 95% CI 1.08 to 1.10), individuals in the highest area-level income quintile (vs lowest income quintile RR 1.02, 95% CI 1.01 to 1.04), and patients with pancreatic cancer (vs colorectal cancer RR 1.10, 95% CI 1.07 to 1.12) had higher intervention rates.
Potentially inappropriate interventions were common in the last 100 days of life of cancer decedents. Variations in interventions may reflect differences in prognostic awareness, healthcare access, and care preferences and quality. Earlier identification of patients’ palliative care needs and involvement of palliative care specialists may help reduce the use of these interventions at the end of life.
In France, when the patient is unable to express his wishes, the decision to withhold or withdraw life-sustaining treatment (WWLST) is made following a collegial procedure described by a law. The aim of our study was to assess how closely this WWLST decision-making procedure in end of life patients was maintained during the COVID-19 pandemic.
This retrospective observational multicentre study compared the rate of non-compliance with WWLST decision-making procedures during the pandemic period from March to June 2020 with control period in 2019, in Clermont-Ferrand and Lyon Hospitals. Secondary objectives were to determine the factors associated with non-compliance.
In 430 deceased patients included (176 in 2019 and 254 in 2020), the rate of non-compliance was 61.4% in 2019 and 59.1% in 2020 (p=0.63). In multivariable analysis, non-compliance was associated with immunosuppression status (OR 1.69, 95% CI (1.12 to 2.54), p=0.01) but was lower in intensive care unit (OR 0.54, 95% CI (0.36 to 0.82), p=0.003) and when the patient had visits from relatives (OR 0.41, 95% CI (0.22 to 0.75), p=0.004).
In France, more than half of WWLST decisions do not comply with the law. The COVID-19 pandemic did not increase this non-compliance rate. Further studies are needed for a better understanding of the mechanisms underlying non-compliance with WWLST decision-making procedure.
There are high rates registered globally of breast cancer, cervical and prostate. People going through have needs that cause an impact in their life’s quality, especially in the final stages of the illness.
To characterise the most evaluated and afflicted physical, emotional, roll, cognitive, social and spiritual needs of patients in the final stages of breast, cervical and prostate cancer.
A thorough systematic search of databases such as Medline (Ovid) and Embase, from databases’ creation throughout 31 December 2021. Quantitative studies were included to evaluate, from the adoption of tools, the dimensions or needs of people going under three types of cancer on final stages.
Twelve studies were included. More common symptoms such as nausea/vomiting and pain were the most evaluated with 83%. Fifty-eight per cent of papers studied the emotional function of people with breast and prostate cancer. Other 42% included roll, cognitive and social appreciations. Sexual, cognitive and physical, in that line, were the most affected. The most common questionnaires used to measure oncological patients on final stages were those from European Organisation for Research and Treatment of Cancer on its C-30, BR-23, C-15 PAL and CR-25 versions.
On breast and prostate cancer, the most affected aspect was the sexual dysfunction, while for cervical cancer, the physical function was the most altered one. Spiritual dimension was not included in any of the evaluated literature.
Hospitalisation in intensive care unit (ICU) may cause changes in oral environment, which may influence patients’ health status. The aim of this study was to evaluate the frequency of intraoral and extraoral findings observed during ICU admission, and to verify if there is an association with clinical prognosis scores.
Data regarding clinical characteristics of patients hospitalised in an ICU were collected from medical records. The prognostic scores Sepsis Related Organ Failure Assessment (SOFA) and Simplified Acute Physiology Score (SAPS 3) were estimated with data collected from admission and SOFA on the day of the oral examination as well. Data on oral mucosa lesions, saliva, dental condition and oral hygiene were evaluated during oral examinations.
The association of oral findings with prognostic scores was statistically verified. The majority (92.2%) of the 170 evaluated patients showed extraoral or intraoral findings during ICU admission. The most frequent findings were chapped and crusted lips, coated tongue, pale mucosa, haemorrhagic lesions, candidiasis, depapillated tongue and traumatic lesions. There were significant higher prognostic scores in the presence of the following extraoral and intraoral findings: crusted and ulcerated lips, haemorrhagic lesions, jaundice, spontaneous oral bleeding, coated and depapillated tongue. Median SAPS 3 was higher in patients with poor oral hygiene.
Oral findings were frequent in the population of patients hospitalised in the ICU and some of them were associated with worse prognostic scores. Routine oral examinations must be performed in hospitalised patients from ICUs for detection of oral markers of worse clinical prognosis.
To assess the association between advance care planning (ACP) and outcomes of in-hospital mortality, 30-day hospital readmission and 30-day emergency department (ED) visits among patients with cancer.
This observational cohort analysis included patients with solid tumour malignancies receiving oncology care and admitted at Yale New Haven Hospital between 1 January 2018 and 31 December 2021.
Among 19 422 patients, 1283 (6.6%) had a documented ACP note. Compared with patients without an ACP, patients with an ACP tended to be older, have longer LOS, be admitted to an oncology inpatient team, subsequently admitted to intensive care unit and have a lower Rothman Index. Multivariable logistic regression identified ACP as independently associated with decreased 30-day readmission (OR=0.70 (95% CI: 0.60 to 0.82)) and 30-day ED visit (OR=0.79 (95% CI: 0.68 to 0.91)), adjusting for in-hospital mortality and patient characteristics.
ACP documentation is associated with decreased readmissions and ED visits, independent of hospice utilisation.
(1) To compare palliative care needs of patients admitted primarily with stroke and (2) to determine how the care needs of these patients affect their use of different types of specialist palliative care services.
Observational study based on point-of-care data from the Australian Palliative Care Outcomes Collaboration. Multivariate logistic regression models were used to explore the association between patients’ palliative care needs and use of community versus inpatient specialist palliative care services.
The majority of patients who had a stroke in this study population had mild or no symptom distress, but experienced a high degree of functional impairment and needed substantial help with basic tasks of daily living. A lower Australia-modified Karnofsky Performance Status score (OR=1.82, 95% CI 1.06 to 3.13) and occurrence of an ‘unstable’ palliative care phase (OR=28.34, 95% CI 9.03 to 88.94) were associated with use of inpatient versus community palliative care, but otherwise, no clear association was observed between the majority of symptoms and use of different care services.
Many people with stroke could potentially have been cared for and could have experienced the terminal phases of their condition in a community setting if more community support services were available for their families.
End of life has unacceptable levels of hospital admission and death. We aimed to determine the association of a novel digital specific system (Proactive Risk-Based and Data-Driven Assessment of Patients at the End of Life, PRADA) to modify such events.
A cohort-controlled study of those discharged alive, who died within 90 days of discharge, comparing PRADA (n=114) with standard care (n=3730).
At 90 days, the PRADA group were more likely to die (78.9% vs 46.2%, p<0.001), had a shorter time to death (58±90 vs 178±186 days, p<0.001) but readmission (20.2% vs 37.9%, p<0.001) or death in hospital (4.4% vs 28.9%, p<0.001) was lower with reduced risk for a combined 90-day outcome of postdischarge non-elective admission or hospital death (OR 0.45, 95% CI 0.27–0.74, p<0.001). Tightening criteria with 1:1 matching (n=83 vs 83) showed persistent significant findings in PRADA contact with markedly reduced adverse events (OR 0.15, 95% CI 0.02–0.96, p<0.05).
Being seen in hospital by a specialist palliative care team using the PRADA tool was associated with significantly improved postdischarge outcomes pertaining to those destined to die after discharge.
The care needs of patients with advanced cancer and their relatives change throughout the disease trajectory. This study focused on the care-related problems and needs of patients with advanced cancer and their relatives. This was done from the perspective of centres for information and support.
This cross-sectional study used data from the eQuiPe study: an observational cohort study in which 40 Dutch hospitals participated. All adult patients with a diagnosis of a metastasised tumour and their relatives were eligible. Measures included information on the patients’ and relatives’ care problems and needs, assessed by the short version of the Problems and Needs in Palliative Care questionnaire. Socioeconomic demographics were also collected.
1103 patients with advanced cancer and 831 relatives were included. Both patients (M=60.3, SD=29.0) and relatives (M=59.2, SD=26.6) experienced most problems in the domain of ‘psychological issues’. Both patients (M=14.0, SD=24.2) and relatives (M=17.7, SD=25.7) most frequently reported unmet needs within this domain. The most often reported unmet need by patients was ‘worrying about the future of my loved ones’ (22.0%); for relatives this was ‘fear for physical suffering of the patient’ (32.8%). There was no clear relationship between socioeconomic demographics and the experienced unmet needs.
The most often mentioned unmet needs consisted of fears and worries, followed by a broad range of topics within multiple domains. Centres for information and support may play a role in reducing the unmet needs of (potential) visitors as these centres provide support on a broad range of topics.
To evaluate the care of patients dying in hospital without support from specialists in palliative care (SPC), better understand their needs and factors influencing their care.
Prospective UK-wide service evaluation including all dying adult inpatients unknown to SPC, excluding those in emergency departments/intensive care units. Holistic needs were assessed through a standardised proforma.
88 hospitals, 284 patients. 93% had unmet holistic needs, including physical symptoms (75%) and psycho-socio-spiritual needs (86%). People were more likely to have unmet needs and require SPC intervention at a district general hospital (DGH) than a teaching hospital/cancer centre (unmet need 98.1% vs 91.2% p0.02; intervention 70.9% vs 50.8% p0.001) and when end-of-life care plans (EOLCP) were not used (unmet need 98.3% vs 90.3% p0.006; intervention 67.2% vs 53.3% p0.02). Multivariable analyses demonstrated the independent influence of teaching/cancer hospitals (adjusted OR (aOR)0.44 CI 0.26 to 0.73) and increased SPC medical staffing (aOR1.69 CI 1.04 to 2.79) on need for intervention, however, integrating the use of EOLCP reduced the impact of SPC medical staffing.
People dying in hospitals have significant and poorly identified unmet needs. Further evaluation is required to understand the relationships between patient, staff and service factors influencing this. The development, effective implementation and evaluation of structured individualised EOLCP should be a research funding priority.
To evaluate the preferred place-of-death (PPoD) among patients with advanced cancer over time, and the concordance between preferred and actual place-of-death.
Prospective cohort study. A total of 190 patients with advanced cancer and their caregivers (n=190) were interviewed every 3 months, from study enrolment to 12 months (M0, M1, M2, M3, M4). PPoD data were obtained under four different end-of-life scenarios: (1) severe clinical deterioration without further specification; (2) clinical deterioration suffering from severe symptoms; (3) clinical deterioration receiving home-based visits; and (4) clinical deterioration receiving home-based visits and suffering from severe symptoms.
Home was the most common PPoD over time among patients in scenarios 1 (n=121, 63.7%; n=77, 68.8%; n=39, 57.4%; n=30, 62.5%; n=23, 60.5%) and 3 (n=147, 77.4%; n=87, 77.7%; n=48, 70.6%; n=36, 75.0%; n=30, 78.9%). PPoD in palliative care unit (PCU) and hospital were most frequent at baseline in scenario 2 (n=79, 41.6%; n=78, 41.1%), followed by hospital over time (n=61, 54.5%; n=45, 66.2%; n=35, 72.9%; n=28, 73.7%). During the curse of illness, 6.3% of patients change their PPoD in at least one of end-of-life scenario. About 49.7%, 30.6% and 19.7% of patients died in PCU, hospital and home, respectively. Living in rural area (OR=4.21), poor health self-perception (OR=4.49) and pain at the last days of life (OR=2.77) were associated with death in PPoD. The overall agreement between last preference and actual place-of-death was 51.0% (k=0.252).
Home death was not the preferred place for a large number of patients when this option was presented within a clinical context scenario. The PPoD and actual place-of-death were depending on the clinical situation.
Dietary interventions are effective strategies to mitigate multiple side effects from androgen deprivation therapy (ADT) in prostate cancer, however the perception of, and access to, nutrition services is relatively unknown.
A qualitative study using semistructured, audio recorded interviews was conducted in men with prostate cancer treated with ADT for ≥3 months. Interviews explored (1) side effects of ADT and drivers for dietary change, (2) accessibility, barriers, facilitators and use of nutrition services and (3) the preferences for nutrition service delivery. Data were coded using interpretative descriptive techniques of textual interview data, and systematically summarised to generate thematical patterns, using NVivo software.
Interviews were completed of 20 men with prostate cancer treated with ADT (25.5±20.1 months). Thematic analysis revealed four overarching themes—(1) the changes from ADT: men revealed that weight gain, loss of muscle and strength from ADT were daily struggles that negatively impact body image and components of masculinity reduced; (2) strategies to take control: several dietary changes were trialled and restrictive in foods and nutrients. Barriers to accessing nutrition specialists were the cost for the service and absence of a clear referral pathway; (3) importance of nutrition knowledge: demand for specialised nutrition services with knowledge in addressing side effects from ADT; (4) diverse patients need diverse nutrition support: that includes peer or partner support, and technology supported nutrition content.
Evidence-based nutrition services are an unmet need for men treated with ADT. Future work is required to develop services that can be readily available and accessible to improve prostate cancer survivorship care.
Travelling communities are a significant, but poorly understood, group of ethnic minorities known to experience inequalities in many aspects of healthcare, including at the end of life. This study explored the end of life care experiences and needs of Travellers, along with the perspectives of healthcare professionals.
Secondary thematic analysis of data from two focus groups and 16 interviews. Eighteen UK-based members of Travelling communities and three healthcare professionals took part in two focus groups. Sixteen hospice staff were interviewed. Data were collected by UK charity One Voice 4 Travellers in 2018.
Tensions permeated the healthcare experience of Travellers. The perceived need for concealment of ethnic identity in the healthcare setting conflicted with participants’ desire for personalised care and tailored services. Healthcare professionals’ limited awareness of Travellers’ cultural rituals around death led to difficulties, including misunderstandings relating to the large numbers of family gathered at the bedside of dying relatives in hospital and hospice settings. Approaches that could increase the acceptability of healthcare included Travellers working in liaison roles, increased provision of space for visiting family and cultural competency training for staff. However, challenges remain in converting ideal solutions into feasible changes.
Improved communication and understanding between Travelling communities and healthcare professionals is needed to relieve the multilevel tensions experienced at the end of life. At an individual level, this would enable personalised care; at a systems level, cocreation of end of life care services with Travellers would help ensure that their cultural needs are met.
Huachansu, a Chinese medicine derived from the dried skin glands of toad venom, has been used in China since the 1970s to treat liver cancer. Transarterial chemoembolisation (TACE) is the standard of care for patients with unresectable hepatocellular carcinoma (HCC). This study evaluated the efficacy and safety of the combination of TACE and Huachansu in unresectable HCC.
From September 2012 to September 2016, 120 patients diagnosed with unresectable HCC were prospectively enrolled. Patients were randomised at a 1:1 ratio into the combined treatment group (Huachansu–TACE) and the TACE treatment group. The primary endpoint was progression-free survival (PFS) and secondary endpoints were overall survival (OS) and safety. The exploration outcome serum Na+/K+-ATPase (NKA) α3 at baseline and 3-month follow-ups were compared for a prognostic role. All patients were subjected to 36-month follow-up.
A total of 112 patients who completed the study were included in the analysis. PFS and OS were significantly better in the Huachansu–TACE group than in the TACE group (p=0.029 and p=0.025, respectively), with a median PFS of 6.8 and 5.3; and a median OS of 14.8 months and 10.7 months, respectively. Although no prognostic significance was found between the baseline NKA-low and NKA-high groups in the patients’ OS (p=0.48), its changes after 3-month follow-up showed significant prognostic values, of which, were 8.5 months and 23.8 months, respectively (p<0.001). Treatment-related adverse events were comparable between groups.
Huachansu–TACE is effective in prolonging the PFS and OS in patients with unresectable HCC.
Evidence suggests that there is a gap in advance care planning (ACP) completion between vulnerable and disadvantaged populations compared with the general population. This review seeks to identify tools, guidelines or frameworks that have been used to support ACP interventions with vulnerable and disadvantaged adult populations as well as their experiences and outcomes with them. The findings will inform practice in ACP programmes.
A systematic search of six databases from 1 January 2010 to 30 March 2022 was conducted to identify original peer-reviewed research that used ACP interventions via tools, guidelines or frameworks with vulnerable and disadvantaged adult populations and reported qualitative findings. A narrative synthesis was conducted.
Eighteen studies met the inclusion criteria. Relatives, caregivers or substitute decision-makers were included in eight studies. Settings: hospital outpatient clinics (N=7), community settings (N=7), nursing homes (N=2), prison (N=1) and hospital (N=1). A variety of ACP tools, guidelines or frameworks were identified; however, the facilitator’s skills and approach in delivering the intervention appeared to be as important as the intervention itself. Participants indicated mixed experiences, some positive, some negative and four themes emerged: uncertainty, trust, culture and decision-making behaviour. The most common descriptors relating to these themes were prognosis uncertainty, poor end-of-life communication and the importance of building trust.
The findings indicate that ACP communication could be improved. ACP conversations should incorporate a holistic and personalised approach to optimise efficacy. Facilitators should be equipped with the necessary skills, tools and information needed to assist ACP decision-making.
To outline the jurisprudential position in UK law regarding capital punishment, the death penalty and contrast this with proposed legislation for assisted dying and euthanasia (AD/E).
A historical medico-legal jurisprudential research approach, focusing on investigating the case law which resulted in the eventual cessation of capital punishment and contrasting this with the arguments used in current proposed legislation for AD/E.
As a society, we are confronted with a similar choice in AD/E as we did in the 1960s with capital punishment, where it has demonstrated, despite a full judiciary process with a jury, that incorrect decisions have been made, resulting in death. In the context of two doctors making irrevocable decisions with prognosis uncertain, diagnostic errors and autonomy being relational—influenced by how others behave towards us—even campaigners for AD/E admit errors are inevitable. Some will have lethal drugs under a wrong diagnosis, an incorrect timespan or coercive pressures; is this cost acceptable?
If the abolition of capital punishment is hard won, with the risk set that no one incorrectly should die, is this the standard that should be set for lethal drugs today? Is the right to choose so important that others’ lives lost are an acceptable cost to pay? If we do accept a radical individual autonomy ethos, what proportion of incorrect deaths is acceptable?
The annual incidence of euthanasia in the Netherlands as a percentage of all deaths rose from 1.9% in 1990 to 4.4% in 2017. Scarce literature on regional patterns calls for more detailed insight into the geographical variation in euthanasia and its possible explanations.
This paper (1) shows the geographical variation in the incidence of euthanasia over time (2013–2017); (2) identifies the associations with demographic, socioeconomic, preferential and health-related factors; and (3) shows the remaining variation after adjustment and discusses its meaning.
This cross-sectional study used national claims data, covering all healthcare claims during 12 months preceding the death of Dutch insured inhabitants who died between 2013 and 2017. From these claims all euthanasia procedures by general practitioners were selected (85% of all euthanasia cases). Rates were calculated and compared at three levels: 90 regions, 388 municipalities and 196 districts in the three largest Dutch cities. Data on possibly associated variables were retrieved from national data sets. Negative binomial regression analysis was performed to identify factors associated with geographical variation in euthanasia.
There is considerable variation in euthanasia ratio. Throughout the years (2013–2017) the ratio in the three municipalities with the highest incidence was 25 times higher than in the three municipalities with the lowest incidence. Associated factors are age, church attendance, political orientation, income, self-experienced health and availability of voluntary workers. After adjustment for these characteristics a considerable amount of geographical variation remains (factor score of 10), which calls for further exploration.
The Netherlands, with 28 years of legal euthanasia, experiences large-scale unexplained geographical variation in the incidence of euthanasia. Other countries that have legalised physician-assisted dying or are in the process of doing so may encounter similar patterns. The unexplained part of the variation may include the possibility that part of the euthanasia practice may have to be understood in terms of underuse, overuse or misuse.
An in-depth understanding of what constitutes a good death among patients with cancer is vital to providing patient-centred palliative care. This review aimed to synthesise evidence on the perceptions of a good death among patients with cancer.
This systematic review involved a synthesis of qualitative data. A three-step process suggested by the Joanna Briggs Institute was used to synthesise the data.
A total of 1432 records were identified, and five articles met the inclusion criteria. Seven synthesised findings emerged: (1) being aware of cancer, (2) pain and symptom management, (3) dying well, (4) being remembered after death, (5) individual perspectives of a good death, (6) individual behaviours leading to a good death, and (7) culture and religions. A structural framework was developed to elicit two layers that could be regarded as determinants of a good death. One layer suggested how multiple external issues impact a good death, whereas the other layer involves patients’ internal attributes that shape their experiences of a good death. The elements in the two layers were inter-related to exert a crossover effect on good death in specific cultural and religious contexts.
A good death is a process initiated from the time of awareness of cancer and extends beyond demise. Holistic approaches encompassing the management of physical and psychological distress along with psychosocial behavioural interventions to enhance patients’ positive perspectives and behaviours are recommended to improve their quality of life and death.
Cancer remains one of the leading causes of death worldwide. Despite advancements in anticancer therapy, some patients decide against treatment. Our study focused on characterising therapy refusal in advanced-stage malignancies and further determining if certain variables significantly correlated with refusal, compared with acceptance.
Our inclusion criteria were patients aged 18–75 years, stage IV cancers between 1 January 2010 and 31 December 2015 and treatment refusal (cohort 1 (C1)). A randomly selected group of patients with stage IV cancers who accepted treatment within the same timeframe was used for comparison (cohort 2 (C2)).
There were 508 patients in C1 and 100 patients in C2. Female sex was associated with treatment acceptance (51/100, 51.0%) than refusal (201/508, 39.6%); p=0.03. There were no associations between treatment decisions and race, marital status, BMI, tobacco use, previous cancer history, or family cancer history. Government-funded insurance was associated with treatment refusal (337/508, 66.3%) than acceptance (35/100, 35.0%); p<0.001. Age was associated with refusal (p<0.001). Average age of C1 was 63.1 years (SD:8.1) and C2 was 59.2 years (SD:9.9). Only 19.1% (97/508) in C1 were referred to palliative medicine, with 18% (18/100) in C2; p=0.8. There was a trend for patients who accepted therapy to have more comorbidities per the Charlson Comorbidity Index(p=0.08). The treatment of psychiatric disorders after cancer diagnosis was inversely associated with treatment refusal (p<0.001).
The treatment of psychiatric disorders after cancer diagnosis was associated with cancer treatment acceptance. Male sex, older age and government-funded health insurance were associated with treatment refusal in patients with advanced cancer. Those who refused treatment were not increasingly referred to palliative medicine.
The objective of this study was to summarise the literature on current interventions available for carers of men with prostate cancer and analyse the outcomes of these interventions in supporting carers’ needs.
A systematic review was conducted, searching databases MEDLINE, PsycINFO, CINAHL, Scopus and Cochrane, using terms related to prostate cancer, carers and interventions. Randomised controlled trials and non-randomised controlled trials of interventions for informal carers with or without patients were included. Data were analysed using descriptive and frequency statistics; interventions and their impact on carers’ outcomes were reported on narratively. The SwiM guidelines were applied to guide data synthesis.
Overall, 24 articles were included in the review. On average, participants were spouses (92%) and women (97%). Interventions largely rwere delivered face-to-face (42%) or used a combination of face to face and online modalities (38%). Two-thirds (63%) showed a significant improvement in carer’s outcomes including psychological, sexual, physical and relationship/marital. The majority of studies (79%) tailored contents to carers’ circumstances, most within a couples counselling format. Over one-third (42%) of studies focused on a range of supportive care needs, most commonly were psychological (58%), sexual (42%) and informational (25%).
Interventions for carers of men with prostate cancer were largely face to face, patient–spouse focused and two-thirds had some measurable impact on carer’s outcomes. Research continues to underserve other patient–carer roles, including non-spousal carers. Interventions delivered solely for carers are required to meet gaps in care, and determine the impact on carer outcomes. Further research and more targeted interventions are needed.
CRD42021249870
Interprofessional care is integral to end-of-life (EOL) and palliative care (PC) and may be suited for EOL and PC education.
We evaluate the impact of an interprofessional EOL care curriculum on participants, during the course, on completion and 4 years later
using quantitative (questionnaires) and qualitative (open-ended questions and interviews) methods.
The course included 14 fifth and sixth-year medical students, 9 social work students and 7 nursing students enrolled in master’s degree programmes. Seventeen participants completed questionnaires 4 years later and eight participated in interviews.
On postcourse questionnaires, participants attributed high value to interprofessional education (IPE) (4.77/5±0.50 on a Likert scale). Four years later, participants reported that IPE impacted their professional (3.65/5±1.11) and personal lives (3.94/5±1.09) and found PC IPE important (4.88/5±0.33).
Conventional content analysis showed that the course enabled discussion of death and dying and provided an opportunity for a personal-emotional journey. It offered an approach to EOL care and an opportunity to experience interprofessional teamwork at the EOL resulting in behavioural change.
Interprofessional EOL education resulted in meaningful and lasting self-reported personal and professional behavioural outcomes.
]]>This quality improvement project looked at enhancing do not attempt cardiopulmonary resuscitation (DNACPR) documentation in a Welsh National Health Service trust.
A full clinical review cycle was carried out, evaluating 50 DNACPR forms in each data collection, totalling 100 forms. The all Wales DNACPR audit template was used to ensure standardised audit criteria. After completion of the first data collection, several changes were introduced: a new version national form was adopted by the trust; a series of education events was launched to improve understanding of the all Wales DNACPR policy. Electronic learning resources, such as the TalkCPR videos and electronic staff record modules, were widely disseminated.
The evaluation of data demonstrated consistency in completion of forms. The introduction of the new national form in phase 2 of the audit resulted in clearer documentation of discussions held with patients and their significant others and documented reasons why and when conversations had not taken place.
Documentation of DNACPR discussions in the trust demonstrably improved in several domains. A central electronic record for advance and future care plans, accessible by all relevant healthcare providers, patients and carers, may be an effective way of improving further on the current paper-based model.
Healthcare organisations are transforming the way care is delivered to people with a life-limiting illness with an increased focus on recognising the voice of the persons experiencing the illness and putting them in the centre of decision-making. However, the clinical practice remains largely based on the views of healthcare professionals and families or carers of the person with the illness.
To synthesise the best available evidence on the experience of persons living with a life-limiting illness about expressing their voice during communication with healthcare professionals.
Systematic review and meta-synthesis.
CINAHL, Embase, Medline, PsycINFO, ProQuest Dissertations and Theses.
A structured search was conducted to identify qualitative studies that reported on the experience of persons living with a life-limiting illness. The methodological quality of included studies was assessed using the Joanna Briggs Institute (JBI) critical appraisal checklists. The review was undertaken using the JBI and PRISMA guidelines.
The expression of the voice of persons living with a life-limiting illness is influenced by: (1) the uncertain future surrounding illness trajectory and prognosis; (2) what is known from experience, media, family and friends; (3) emotional and psychological factors and (4) control and personal autonomy.
In the early stages of a life-limiting illness, the voice of those experiencing the disease is not always audible. Instead, this voice is potentially present but silent and carried and promoted within healthcare professionals’ values of accountability, professionalism, respect, altruism, equality, integrity and morality.
During the COVID-19 pandemic, telemedicine (TM) emerged as an important mean to reduce risks of transmission, yet delivering the necessary care to patients. Our aim was to evaluate feasibility, characteristics and satisfaction for a TM service based on phone/video consultations for patients with cancer attending an outpatient palliative care clinic during COVID-19 pandemics.
A longitudinal observational study was conducted from April to December 2020. Consecutive patients were screened for video consultations feasibility. Either patients or their caregivers received video/phone consultations registering reason and intervention performed. Those contacted at least twice were eligible for experience of care assessment.
Video consultations were feasible in 282 of 572 screened patients (49%, 95% CI 45% to 52%); 112 patients among the 572 had at least two phone/video consultations and 12 of them had one or more video consultations. Consultations were carried out with patients (56%), caregivers (30%) or both (14%). 63% of the consultations were requested by the patients/caregivers. Reasons for consultation included uncontrolled (66%) or new symptom onset (20%), therapy clarifications (37%) and updates on diagnostic tests (28%). Most interventions were therapy modifications (70%) and appointments’ rescheduling (51%). 49 patients and 19 caregivers were interviewed, reporting good care experience (average of 1–5 satisfaction score of 3.9 and 4.2, respectively). The majority (83% and 84%) declared they would use TM after the pandemics.
Although feasibility is still limited for some patients, TM can be a satisfactory alternative to in-person visits for palliative care patients in need of limiting access to the hospital.
Heart failure (HF) is a prevalent condition associated with poor quality-of-life and high symptom burden. As patients reach ceilings of survival-extending interventions, their priorities may be more readily addressed through the support of palliative care services; however, the best model of care remains unestablished.
We aimed to create and evaluate a cospeciality cross-boundary service model for patients with HF that better provides for their palliative care needs in the latter stages of life, while delivering a more cost-effective patient journey.
In 2016, the Heart Failure Supportive Care Service (HFSCS) was established to provide patient-centred holistic support to patients with advanced HF. Patient experience questionnaires were developed and distributed in mid-2018 and end-of-2020. Indexed hospital admission data (in-patient bed days pre-referral/post-referral) were used allowing statistical comparisons by paired t-tests.
From 2016–2020, 236 patients were referred to the HFSCS. Overall, 75/118 questionnaires were returned. Patients felt that the HFSCS delivered compassionate care (84%) that improved symptoms and quality of life (80% and 65%). Introduction of the HFSCS resulted in a reduction in HF-related admissions: actual days 18.3 to 4 days (p<0.001), indexed days 0.05 to 0.032 days (p=0.03). Cost mapping revealed an estimated average saving of at least £10 218.36 per referral and a total estimated cost saving of approximately £2.4 million over 5 years.
This service demonstrates that a cospeciality cross-boundary method of care delivery successfully provides the benefits of palliative care to patients with HF in a value-based manner, while meeting the priorities of care that matter to patients most.
Integrative oncology (IO) appears to be beneficial to patients with cancer, but its implementation remains a challenge. Guided by the Theoretical Domains Framework (TDF) and the Capability–Opportunity–Motivation–Behaviour (COM-B) model, this systematic review identified the barriers to and facilitators of IO implementation in conventional cancer care settings.
We searched eight electronic databases from their inception until February 2022 for qualitative, quantitative or mixed-methods empirical studies reporting the implementation outcomes for IO services. Critical appraisal approach was tailored according to study types. The identified implementation barriers and facilitators were mapped onto TDF domains and the COM-B model, and subsequently onto the behavioural change wheel (BCW) for formulating behavioural change interventions.
We included 28 studies (11 qualitative, 6 quantitative, 9 mixed-methods and 2 Delphi studies) of satisfied methodological quality. The main implementation barriers were the lack of IO knowledge, the absence of funding and healthcare professionals’ low level of IO receptiveness. The key implementation facilitators were the dissemination of evidence on IO clinical benefits, the equipping of professionals with IO service delivery skills and the provision of a supportive organisational climate.
Multifaceted implementation strategies are needed to address the determinants influencing IO service delivery. Based on our BCW-based analysis of the included studies, the key behavioural change techniques are: (1) educating healthcare professionals about the value and application of traditional and complementary medicine; (2) ensuring access to actionable clinical evidence on IO effectiveness and safety and (3) designing guidelines on communicating traditional and complementary medicine interventions with patients and caregivers for biomedically trained doctors and nurses.
The need for palliative care is constantly growing worldwide. Palliative care is typically provided by a multidisciplinary team in community-based facilities. As part of this team, physiotherapists can effectively address prevalent symptoms, such as pain, breathing difficulties and reduced functional capacity. A few studies reported low physiotherapy services’ utilisation by people who require palliative care. Israel was rated among countries having the highest level of palliative care integration in the array of basic medical services in a global survey. This study’s purpose was to explore, for the first time, the scope of palliative physiotherapy treatments that home dwelling people receive in Israel.
A retrospective chart review of people who had been referred to home hospice care during the year 2019.
A total of 1587 people were included in this study, of which only 34.7% received community-based physiotherapy treatments during the last 6 months of their lives. People treated by palliative physiotherapy usually received a short intervention of 1–3 treatments, with an average of 5.37 treatments. No differences were found regarding age, gender and geographical location in relation to metropolitan area between people who had received such treatments and people who had not. A high socioeconomic place of residence rating and the presence of chronic life-limiting illness or progressive neurological disorder significantly predicted the possibility of receiving physiotherapy treatments.
Future studies should explore the inhibiting and promoting factors for receiving palliative physiotherapy treatments, focusing on persons’ comorbidities and their sociodemographic characteristics.
In 2015 the All-Ireland Institute of Hospice and Palliative Care identified access to specialist palliative care (SPC) advice out of hours (OOH) as their number one research priority. Receiving appropriate advice in response to palliative care needs OOH can address a patient/family’s concerns and prevent unnecessary hospital attendances.
The aim of this study was to describe the current model of SPC OOH advice in the units that run this service, and gain a greater understanding of the nature of calls received by these services.
A national online survey was sent to staff providing OOH advice to patients with SPC needs and a second survey was sent to the managers of the organisations within Ireland. Surveys were emailed with a link to managers of both inpatient and community services who provide SPC.
78 clinical staff who provide OOH telephone advice responded to the survey and there were 23 responses to the managers’ survey. The most common type of call received was in relation to symptom management (97%); however, 73% of staff indicated that they had no specific training in giving OOH advice over the phone and furthermore 44% of respondents felt ill equipped and uncomfortable giving OOH advice for a number of reasons.
This survey has highlighted the need for support and training to the staff providing OOH SPC advice and that a set of standards to guide practice would be useful to this cohort of staff.
Skeletal muscle mass (SMM) is an important biomarker for prognosis and health in older patients with cancer. Limited information is available on the recovery course of SMM after oesophagectomy following neoadjuvant chemotherapy (NAC) in older patients. This study was performed to investigate the recovery course of SMM after oesophagectomy following NAC and the preoperative predictors of delayed recovery in older patients with locally advanced oesophageal cancer (LAEC).
This single-centre retrospective cohort study involved older (≥65 years) and non-older (<65 years) patients with LAEC who underwent oesophagectomy following NAC. The SMM index (SMI) was calculated using CT images. One-way analysis of variance and multivariate logistic regression analysis were performed.
In total, 110 older patients and 57 non-older patients were analysed. Loss of the SMI after NAC to 12 months postoperatively was significantly greater in older patients than in non-older patients (p<0.01). The significant preoperative predictor of delayed recovery of the SMI 12 months after surgery was loss of the SMI during NAC in older patients (per 1%: adjusted OR 1.249; 95% CI 1.131 to 1.403; p<0.001), but not in non-older patients (per 1%: OR 1.074; 95% CI 0.988 to 1.179; p=0.108).
There is an especially large unmet need for preventing the long-term sequelae of SMM loss in older patients with LAEC after oesophagectomy following NAC. In older patients, loss of SMM during NAC is an especially useful biomarker for prescribing postoperative rehabilitation to prevent postoperative loss of SMM.
Few studies have examined whether access to, and quality of, specialised palliative care changed during the COVID-19 pandemic. This study investigated changes in access to and quality of specialised palliative care during the pandemic in Denmark compared to previously.
An observational study using data from the Danish Palliative Care Database combined with other nationwide registries was conducted, including 69 696 patients referred to palliative care services in Denmark from 2018 to 2022. Study outcomes included number of referrals and admissions to palliative care, and the proportions of patients fulfilling four palliative care quality indicators. The indicators assessed admissions among referred, waiting time from referral to admission, symptom screening using the European Organisation for Research and Treatment of Cancer Quality of Life Questionaire-Core-15-Palliative Care (EORTC QLQ-C15-PAL) questionnaire at admission, and discussion at multidisciplinary conference. Logistic regression analysed whether the probability of fulfilling each indicator differed between the pandemic period and pre-pandemic, while adjusting for possible confounders.
Number of referrals and admissions to specialised palliative care were lower during the pandemic. The odds for being admitted within 10 days of referral was higher during the pandemic (OR: 1.38; 95% CI: 1.32 to 1.45) whereas the odds for answering the EORTC questionnaire (0.88; 95% CI: 0.85 to 0.92) and for being discussed at multidisciplinary conference (0.93; 95% CI: 0.89 to 0.97) were lower compared with pre-pandemic.
Fewer patients were referred to specialised palliative care during the pandemic, and fewer were screened for palliative care needs. In future pandemics or similar scenarios, it is important to pay special attention to referral rates and to maintain the same high level of specialised palliative care.
As the number of people living beyond cancer treatment has increased, supportive post-treatment interventions have become increasingly important. The present study investigates whether participation in the Maggie’s ‘Where Now?’ post-cancer support programme is associated with improvements in healthy eating, quality of life, self-efficacy (confidence) or cancer worry.
In a pre–post design, 88 people who had completed cancer treatment and were enrolled in the 7-week ‘Where Now?’ programme at Maggie’s centres across the UK rated their diet, activity, quality of life, self-efficacy and cancer worries before and after programme participation. Programme content was coded to identify the techniques used to create change (‘behaviour change techniques’).
Programme participation was associated with significant improvements in general self-efficacy (p=0.01), self-efficacy about engaging in physical activity (p<0.01), quality of life (p<0.01) and cancer worry (p=0.04) but not with changes in healthy eating (p=0.23).
Participation in the ‘Where Now?’ programme is associated with significant improvements in several key psychological outcomes in people living beyond cancer. The techniques most commonly used in the programme to create change were giving participants instructions about how to perform a particular behaviour, encouraging problemsolving to overcome barriers and setting goals.
Haematology patients are more likely to receive high intensity care near end of life (EOL) than patients with solid malignancy. Previous authors have suggested indicators of quality EOL for haematology patients, based on a solid oncology model. We conducted a retrospective chart review with the objectives of (1) determining our performance on these quality EOL indicators, (2) describing the timing of level of intervention (LOI) discussion and palliative care (PC) consultation prior to death and (3) evaluating whether goals of therapy (GOT), PC consultation and earlier LOI discussion are predictors of quality EOL.
We identified patients who died from haematological malignancies between April 2014 and March 2016 (n=319) at four participating McGill University hospitals and performed retrospective chart reviews.
We found that 17% of patients were administered chemotherapy less than 14 days prior to death, 20% of patients were admitted to intensive care, 14% were intubated and 5% were resuscitated less than 30 days prior to death, 18% of patients received blood transfusion less than 7 days prior to death and 67% of patients died in an acute care setting. LOI discussion and PC consultation occurred a median of 22 days (IQR 7–103) and 9 days (IQR 3–19) before death. Patients with non-curative GOT, PC consultation or discussed LOI were significantly less likely to have high intensity EOL outcomes.
In this study, we demonstrate that LOI discussions, PC consults and physician established GOT are associated with quality EOL outcomes for patients with haematological malignancies.
There is a growing debate surrounding the legalisation of medical assistance in dying (MAID). MAID is currently prohibited by the French law; however, the debate has recently been reinvigorated in France. This study aims to collect opinions of palliative care stakeholders (PCS) regarding the legalisation of MAID and to identify the factors associated with their opinions.
We performed a transversal survey between 26 June 2021 and 25 July 2021, on PCS who were on the French national scientific society for palliative care. Participants were invited by email.
1439 PCS took part and expressed an opinion about the legalisation of MAID. 1053 (69.7%) were against the legalisation of MAID. When forced to choose which option should be privileged if the law had to change, 3.7% favoured euthanasia, 10.1% favoured assisted suicide with provision of lethal drug by a professional, 27.5% favoured assisted suicide with prescription of a lethal drug and 29.5% favoured assisted suicide with provision of a lethal drug by an association. The opinion regarding legalisation of MAID was statistically different depending on the participant profession (p<0.001) and when comparing clinical and non-clinical positions (p<0.001). A quarter of participants (26.7%) believe that legalising MAID might lead them to change their current position.
Overall, French palliative care professionals are against a modification of the current legal framework for legalising MAID but some might change their current position if a law was voted. This might destabilise the PCS demography that is already worrying.
In this study, we investigated the effect of the weekend and summer vacation on mortality in patients with cancer.
All patient data were obtained from their hospital registry records and the Death Notification System of the Ministry of Health.
The majority of patients died in the hospital compared at home, 80.8% versus 19.2%, respectively. Patients aged <65 died mostly in hospital, which was the opposite of those aged ≥65, who died at home. While tumour location and histopathological type had no effect on the place of death, patients with metastasis (including single organ metastasis), diffuse metastases (diffuse metastases: multiple organ metastases) and patients with locally advanced stage disease were found to die more frequently in the hospital. Deaths in the hospital occurred most frequently in August, while deaths at home occurred most frequently in April and October. Deaths in the hospital occurred most frequently on Friday, Saturday and Sunday, while deaths at home occurred more frequently on Monday. It was determined that the deaths in the hospital were significantly higher at the weekend.
This study contains data supporting the weekend effect in oncology patients. Moreover, it provides new data on the increased death rates in August, which coincides with the summer vacation leave month.
This research investigated the effectiveness of the caregiver-mediated online dignity therapy in enhancing dyadic health and family function.
Heart failure (HF) family dyads were recruited between May and December 2021 from a university-affiliated hospital in China. The dyads (N=70) were randomly allocated to the intervention group and the control group. We assessed patients’ outcomes (hope, well-being, Family APGAR Index and quality of life (QoL)) and their family caregivers’ outcomes (anxiety, depression and Family APGAR Index) at baseline (T0), 1 week (T1), 4 weeks (T2) and 8 weeks (T3) after discharge.
For patients, the difference over time was significant in QoL (p<0.001). The interaction effects were significant for hope (p<0.001), well-being (p<0.001), Family APGAR Index (p<0.001) and QoL (p=0.007). For family caregivers, a significant difference in depression (p=0.001) was found within groups. Meanwhile, the interaction effects were significant on anxiety (p=0.002) and depression (p=0.016).
Caregiver-mediated online dignity therapy among patients with advanced HF had potential to enhance patient outcomes (level of hope, well-being, family function and QoL) and alleviate caregiver outcomes (anxiety, depression) at 4-week and 8-week follow-up. Thus, we provided scientific evidence for palliative care for advanced HF.
ChiCTR2100053758.
The total artificial heart (TAH) is an implanted device approved as a modality to stabilize patients with severe biventricular heart failure or persistent ventricular arrhythmias for evaluation and bridge to transplantation. According to the Interagency Registry for Mechanically Assisted Circulatory Support (INTERMACS), about 450 patients received a TAH between 2006 and 2018. Patients being evaluated for a TAH are often critically ill and a TAH offers the best chance at survival. Given the prognostic uncertainty of these patients, there is a crucial need for preparedness planning to help patients and their caregivers plan for living and supporting a loved one with a TAH.
To describe an approach to preparedness planning and highlight the importance of palliative care.
We reviewed the current needs and approaches to preparedness planning for a TAH. We categorized our findings and suggest a guide to maximize conversations with patients and their decision makers.
We identified four critical areas to address: the decision maker, minimal acceptable outcome/maximal acceptable burden, living with the device, and dying with the device. We suggest using a framework of mental and physical outcomes and locations of care as a way to identify minimal acceptable outcome and maximal acceptable burden.
Decision making for a TAH is complex. There is an urgency and patients do not always have capacity. Identifying legal decision makers and social support is critical. The surrogate decision makers should be included in preparedness planning including discussions about end-of-life care and treatment discontinuation. Having palliative care as members of the interdisciplinary mechanical circulatory support team can assist in these preparedness conversations.
We explored, in advanced breast cancer, whether: (1) patients recall less information following bad versus good news consultations; (2) empathy has a greater effect on recalled information following bad versus good news consultations.
Observational study using audio-recorded consultations. Participants’ recall of provided information about treatment options, aims/positive effects and side-effects was assessed. Clinician-expressed empathy and consultation type were determined. Regression analyses assessed associations between consultation type and recall, exploring moderating influences of clinician-expressed empathy.
For 41 consultations (18 bad news, 23 good news), recall data were completed; total recall (47% vs 73%, p=0.03) and recall about treatment options (67% vs 85%, p=0.08, trend) were significantly worse following bad news compared with good news consultations. Recall about treatment aims/positive effects (53% vs 70%, p=0.30) and side-effects (28% vs 49%, p=0.20) was not significantly worse following bad news. Empathy moderated the relationship between consultation type and total recall (p<0.01), recall about treatment options (p=0.03) and about aims/positive effects (p<0.01) but not about side-effects (p=0.10). Only following good news consultations empathy influenced recall favourably.
This explorative study suggests that in advanced cancer, information recall is especially impaired following bad news consultations, for which empathy does not improve remembered information.
To evaluate current clinical practices of assessment, diagnosis and management of oral candidiasis in a specialist palliative care unit to improve patient outcomes through compliance with the Australian Commission on Safety and Quality in Health Care Antimicrobial Stewardship Clinical Care Standard.
A clinical audit cycle: review of 100 patient records preceded an educational intervention delivered over 4 weeks to clinical stakeholders, followed by a review of an additional 100 records.
Eleven patients in each cohort had oral candidiasis. A statistically significant improvement in documented rates of oral examination (33% to 51%, p=0.015) and appropriate microbiological testing (0% to 63.6%, p=0.004) was achieved. Documentation of oral symptoms and prescribing practices were unchanged.
Meaningful changes in practice relating to oral assessment and diagnosis of oral candidiasis are possible. Future iterations of the audit cycle may benefit from multimodal interventions to encourage further practice change.
The purpose of this study was to test an intervention named ACCESS (Access for Cancer Caregivers to Education and Support for Shared Decision Making). The intervention uses private Facebook support groups to support and educate caregivers, preparing them to participate in shared decision-making during web-based hospice care plan meetings. The overall hypothesis behind the study was that family caregivers of hospice patients with cancer would experience lower anxiety and depression as a result of participating in an online Facebook support group and shared decision-making with hospice staff in a web-based care plan meeting.
This is a cluster cross-over randomised three-arm clinical trial where one group participated in both the Facebook group and the care plan team meeting. A second group participated only in the Facebook group and the third group was a control group and received usual hospice care.
There were 489 family caregivers who participated in the trial. There were no statistically significant differences between the ACCESS intervention group and the Facebook only or the control group on any outcome. The participants in the Facebook only group, however, experienced a statistically significant decrease in depression compared with the enhanced usual care group.
While the ACCESS intervention group did not experience significant improvement in outcomes, caregivers assigned to the Facebook only group showed significant improvement in depression scores from baseline as compared with the enhanced usual care control group. Further research is needed to understand the mechanisms of action leading to reduced depression.
Palliative surgery aims to relieve patients’ symptoms and improve quality of life with surgical interventions. While a multidisciplinary approach has been found beneficial for critically ill patients, limited evidence supports this approach in palliative surgery. Here we sought to study whether palliative care consultations can improve outcomes among patients undergoing palliative surgery.
Consecutive patients undergoing palliative care at gastrosurgical wards in a tertiary Finnish university hospital during a 2-year study period were included. Outcomes of those undergoing surgery with or without palliative care consultation were compared. The main outcome measures were patients’ functional status, postoperative morbidity and mortality.
A total of 312 patients were included, of whom 173 underwent surgery, 77 endoscopic care and 62 were treated conservatively. Of the operated patients, 24 underwent multidisciplinary assessment while among the rest, the treatment decision was based on the surgeons’ assessment. Multidisciplinary assessment was associated with a clinically significantly reduced morbidity (8.3% vs 23%, p=0.111), in-hospital mortality (8.3% vs 17%, p=0.051) and rate of hospital readmissions (8.3% vs 21%, p=0.052). There was no difference in median survival 49 (2–440) vs 45 (1–971) days (p=0.949). Of those undergoing conservative care, 44% could have undergone surgery.
The aim of the palliative surgery is to relieve symptoms among patients with no hope of being cured. While the involvement of the palliative care consultation into the surgical decision-making is likely to reduce unnecessary operations, it is likely to be even more important in improving quality of end-of-life care.
Allocating resources in palliative care is challenging due to the nature of life-limiting illness coupled with the propensity for significant physical symptoms and psychological distress. At present, there is no established system for triaging referrals and prioritising resource allocation.
This study aimed to evaluate the feasibility of using a case mix assessment tool for telephone-assisted triaging of referrals to a specialist palliative care service. This assessed a patient’s phase of illness, Problem Severity Score (PSS) for complexity of symptom burden and psychological distress, and functional status.
Using a prospective consecutive case series approach, 450 referrals to community palliative care over a 6-month period were assessed. Scores for phase of illness, PSS and functional status were assessed at triage, as was the triage category of urgency of response.
Analysis demonstrated that phase of illness corresponds with triage category, with terminal or unstable phase patients significantly associated with urgent (category 1) referrals and highest priority for review. Decreased functional status and high PSS were useful predictors for increased urgency of referral.
These results demonstrate that this case mix tool could assist in the telephone assessment and triage of referrals to community palliative care.
We aimed to explore the association between receiving an inpatient palliative care consultation and hospital outcomes, including in-hospital death, intensive care unit (ICU) use, discharge to hospice, 30-day readmissions and 30-day emergency department (ED) visits.
We conducted a retrospective chart review of Yale New Haven Hospital medical oncology admissions from January 2018 through December 2021, with and without inpatient palliative care consultations. Hospital outcome data were extracted from medical records and operationalised as binary. Multivariable logistic regression was used to estimate ORs for the association between number of inpatient palliative care consultations and hospital outcomes.
Our sample included 19 422 patients. Age, Rothman Index, site of malignancy, length of stay, discharge to hospice, ICU admissions, hospital death and readmissions within 30 days differed significantly between patients who received versus did not receive a palliative care consultation. On multivariable analysis, receiving one additional palliative care consultation was significantly associated with higher odds of hospital death (adjusted OR=1.15, 95% CI 1.12 to 1.17) and discharge to hospice (adjusted OR = 1.23, 95% CI 1.20 to 1.26), and lower odds of ICU admission (adjusted OR=0.94, 95% CI 0.92 to 0.97). There was no significant association between palliative care consultations and readmission within 30 days or with ED visits within 30 days.
Inpatients receiving palliative care had increased likelihood of hospital death. However, when controlling for significant differences in patient presentation, patients had nearly 25% greater odds of discharge to hospice and less odds to transition to ICU level of care.
Outpatient in-person early palliative care improves quality of life for patients with advanced cancer. The COVID-19 pandemic forced a rapid shift to telehealth visits; however, little is known about how telehealth in outpatient palliative care settings should be optimised beyond the pandemic. We aimed to explore, from the perspective of patients attending an outpatient palliative care clinic, the most appropriate model of care for in-person versus telehealth visits.
A qualitative study using the grounded theory method. One-on-one, semistructured qualitative interviews were conducted with 26 patients attending an outpatient palliative care clinic at a tertiary cancer centre recruited from two groups: (1) those with >1 in-person appointment prior to 1 March 2020 and >1 telehealth appointment after this date (n=17); and (2) patients who had exclusively telehealth appointments (n=9). Purposive sampling was used to incorporate diverse perspectives.
Overall, participants endorsed a flexible hybrid approach incorporating both in-person and telehealth visits. Specific categories were: (1) in-person outpatient palliative care supported building interpersonal connections and trust; (2) telehealth palliative care facilitated greater efficiency, comfort and independence and (3) patient-preferred circumstances for in-person visits (preferred for initial consultations, visits where a physical examination may be required and advance care planning discussions), versus telehealth visits (preferred during periods of relative heath stability).
The elements of in-person and telehealth outpatient palliative care clinic visits described by patients as integral to their care may be used to develop models of hybrid outpatient palliative care delivery beyond the pandemic alongside reimbursement and regulatory guidelines.
To describe the population of a palliative care day hospital (PCDH) in oncology and analyse the end-of-life trajectory.
Monocentric retrospective cohort study of all referred patients for the first time to PCDH over an 8-month period with the data collected in all PCDH in their pathway care.
116 patients were included for 319 stays in PCDH. At first referral PCDH, 62 (53.4%) patients had ongoing anticancer therapy. Twenty-four (20.7%) and 63 (54.3%) patients were in an unstable and deteriorating phase, respectively. Mean (SD) Eastern Cooperative Oncology Group performance status score was 2.8 (0.7). Mean (SD) stay per patient was 2.8 (2.2). For all stays, mean (SD) of joint intervention of palliative care team and oncologist was 1.2 (1.2) per patient. Mean (SD) of technical acts performed was 0.2 (0.6) per patient. Among the 109 deceased patients, 16 patients (14.7%) and 7 patients (6.4%) had received chemotherapy in the last month and 15 days before death, respectively.
Our PCDH is a suitable place for a complex population still living at home. The reported patients’ demographics and PCDH’s organisation lead to a hybrid outpatient intervention between outpatient clinics and hospice care services. A randomised multicentric trial is ongoing to explore the impact of PCDH on patients’ trajectory and the use of resources.
This study aimed at evaluating the impact of COVID-19 on emergency department (ED) visits in a tertiary cancer centre and providing information on the features of the unplanned events during the first wave of COVID-19 pandemic.
This retrospective observational study based on data from ED reports was divided into three periods of 2 months each around the first lockdown announcement of 17 March 2020: pre-lockdown, lockdown and post-lockdown.
A total of 903 ED visits were included in the analyses. The mean (±SD) daily number of ED visits did not change during the lockdown period (14.6±5.5) when compared with the periods before (13.6±4.5) and after lockdown (13.7±4.4) (p=0.78). The proportion of ED visits for fever and respiratory disorders increased significantly to 29.5% and 28.5%, respectively (p<0.01) during lockdown. Pain, the third most frequent motive, remained stable with 18.2% (p=0.83) throughout the three periods. Symptom severity also showed no significant differences in the three periods (p=0.31).
Our study shows that ED visits during the first wave of the COVID-19 pandemic remained stable for our patients regardless of the symptom’s severity. The fear of an in-hospital viral contamination appears weaker than the need for pain management or for the treatment of cancer-related complications. This study highlights the positive impact of cancer ED in the first-line treatment and supportive care of patients with cancer.
Financial pressures and competing demands for limited resources highlight the importance of defining the unmet need for specialty inpatient palliative care (PC), demonstrating the value of the service line and making decisions about staffing. One measure of access to specialty PC is penetration, the percentage of hospitalised adults receiving PC consultations. Although useful, additional means of quantifying programme performance are required for evaluating access by patients who would benefit. The study sought to define a simplified method of calculating unmet need for inpatient PC.
This retrospective observational study analysed electronic health records from six hospitals in one health system in Los Angeles County.
Unmet need for PC was defined by the number of hospitalised patients with four or more chronic serious comorbidities without a PC consultation divided by a denominator of all patients with one or more chronic serious conditions (CSCs) without a PC during the hospitalisation.
This calculation identified a subset of patients with four or more CSCs that accounts for 10.3% of the population of adults with one or more CSCs who did not receive PC services during a hospitalisation (unmet need). Monthly internal reporting of this metric led to significant PC programme expansion with an increase in average penetration for the six hospitals from 5.9% in 2017 to 11.2% in 2021.
Health system leadership can benefit from quantifying the need for specialty PC among seriously ill inpatients. This anticipated measure of unmet need is a quality indicator that complements existing metrics.
Patients with kidney failure (KF) have poor prognosis yet receive aggressive medical interventions at the end of life. Advance care planning (ACP) aims to respect patients’ treatment preference and facilitate good death, though whether these are achieved in KF is unknown.
This study examines the utility of ACP for end-of-life care in KF patients.
A retrospective observational study of KF patients who completed an ACP document 2012–2019 and died in an Australian hospital. Medical records were reviewed to assess treatment concordance to the ACP document and quality of end-of-life care received.
65 KF patients (29 dialysis, 36 conservative) had a median age of 84 years and 57% males. 86% of deaths followed an emergency admission. ACP documents recorded patients’ preference to avoid cardiopulmonary resuscitation (91%) and forego dialysis (86%). 95% patients received treatment concordant with ACP. One patient was resuscitated, and one conservative patient dialysed. A good quality death was achieved for most, including dialysis withdrawal (80%), palliative care referral (88%), discussion of prognosis (95%), rationalised medications (89%) and anticipatory end-of-life medications (92%).
ACP documents are useful facilitating treatment concordant with KF patients’ preferences. Most patients avoided aggressive medical interventions and received good quality end-of-life care.
Integrative oncology (IO) is increasingly being incorporated in supportive and palliative cancer care. This study examined an IO-palliative care training programme for nurses from community and hospital settings.
A 120-hour course, attended by 24 palliative care nurses without IO training, included precourse/postcourse questionnaires examining knowledge, attitudes and level of IO-palliative care skills. Qualitative analysis examined precourse and postcourse narratives.
Most (18; 75%) completed study questionnaires, with knowledge and attitudes towards IO changing only modestly and IO-related skills significantly for guidance on herbal medicine and lifestyle changes, manual-movement and mind-body modalities. Greater consultation skills were reported for fatigue, stomatitis, nausea, appetite, constipation/diarrhoea, insomnia, peripheral neuropathy and hot flashes. Trainees reported improved skills for pain (p=0.003), emotional (p<0.001) and informal caregiver-related concerns (p<0.001), with no change in palliative care-related skills. Qualitative analysis found both personal and professional attitude changes, with enhanced mindfulness and an expressed intent to implement the learnt skills in daily practice.
The IO-palliative care nurse training programme increased IO-related and palliative care-related consultation skills for a wide range of quality of life-related concerns. Further research is needed to explore both short-term and long-term effects and the implementation of the learnt skills in clinical practice.
Caregivers play a key role in providing support to people with cancer. However, caregiving can be stressful and demanding, resulting in perceived caregiver burden. Social connectedness is considered partially independent from social support, yet few studies have examined whether social connectedness impacts caregiver burden. The current study sought to examine: (a) associations among social support, social connectedness and burden in a sample of cancer caregivers and (b) the mediating effect of social connectedness on the relationship between social support and caregiver burden.
A descriptive cross-sectional study was conducted. Data were collected as part of a larger project. The sample included 125 caregiver-cancer care recipient dyads. Caregivers completed the Social Connectedness Scale-Revised, the Medical Outcomes Study–Social Support Survey and the Zarit Burden Interview. Descriptive statistics, hierarchical multiple regression and mediation analyses were used to examine relationships between variables.
Correlation analyses showed higher perceived social support and social connectedness were significantly correlated with lower-reported caregiver burden (p<0.05). The hierarchical regression model showed that both social support and social connectedness were independent predictors of caregiver burden (p<0.001). Social connectedness partially mediated the relationship between social support and caregiver burden.
This study provides new evidence that social support buffers the negative effects of burden in caregivers, suggesting these are potentially modifiable factors of caregiver burden. Increased understanding of the factors that contribute to burden among cancer caregivers will inform targeted supportive care strategies to improve psychological health and well-being in this underserved group.
To assess the impact of COVID-19 on the palliative care (PC) publication trend in the last 10 years and the collaboration between countries and main topics that were discussed in the papers.
We used Scopus to identify publications on PC between 2012 and 2021 and publications about PC and COVID-19 between 2020 and 2021. We used VOSviewer to assess the main topics using the keywords from the papers and to assess country collaboration.
1937 publications resulted. An increase in publications about PC was observed during the pandemic, only partially explained by OVID-19-related publications. Cancer-related PC publications were the ones with the most marked increase. We identified six clusters in the distribution of the keywords: bioethics, cancer, nursing home/telemedicine, public health, caring and PC following the WHO definition. The countries with higher number of publications were the United States and England.
We showed an increase in the number of PC publications in the last 2 years that was only partially explained by COVID-19-related publications. Most of the publications increase was due to cancer-related publications, since, during the time of the pandemic, publications on cancer and PC increased markedly, while those on heart failure, lung disease and dementia, remained constant.
The complex care needs and high mortality of critically ill patients in intensive care unit (ICU) warrants a team approach. While studies have affirmed the integral role of palliative care teams in ICU, little is known about the ICU healthcare professional’s perception on how this integration affects the care of the critically ill.
This study examines their perception of how integration of palliative care into ICU practice affects interprofessional collaborative practices and relationships in the delivery of care.
A qualitative study was conducted in 13 focus group discussions with 54 ICU healthcare professionals recruited through purposive sampling. Data were analysed using a qualitative descriptive approach reflecting uninterpreted participants’ description of their experiences in its most unbiased manner.
ICU clinicians perceived that palliative care integration into the ICU enhanced care of patients and team dynamics in three areas: (1) bridging care, (2) cultural shift and (3) empowering, advocating and enhancing job satisfaction. Enhanced collaborative efforts between disciplines led to improved mutual understanding, shared-decision making and alignment of care goals. There was a shift in perception of dying as a passive process, to an active process of care where various healthcare professionals could work together to optimise symptom control and support grieving families. Team members felt empowered to advocate for patients, improving their sense of job fulfilment.
Palliative care integration enhanced perception of collaborative practices in caring for the dying. Future studies could use empirical methods to measure collaboration and patient outcomes to further understand team dynamics.
Investigators in palliative care rely heavily on routinely collected data, which carry risk of unobserved confounding and selection bias. ‘Natural experiments’ offer opportunities to generate credible causal treatment effect estimates from observational data.
We aimed first to review studies that employed ‘natural experiments’ to evaluate palliative care, and second to consider implications for expanding use of these methods.
We searched systematically seven databases to identify studies using ‘natural experiments’ to evaluate palliative care’s effect on outcomes and costs. We searched three grey literature repositories, and hand-searched journals and prior systematic reviews. We assessed reporting using the Strengthening the Reporting of Observational Studies in Epidemiology checklist and a bespoke methodological quality tool, using two reviewers at each stage. We combined results in a narrative synthesis.
We included 17 studies, which evaluated a wide range of interventions and populations. Seven studies employed a difference-in-differences design; five each used instrumental variables and interrupted time series analysis. Outcomes of interest related mostly to healthcare use. Reporting quality was variable. Most studies reported lower costs and improved outcomes associated with palliative care, but a third of utilisation and place of death evaluations found no effect.
Among the large number of observational studies in palliative care, a small minority have employed causal mechanisms. High-volume routine data collection, the expansion of palliative care services worldwide and recent methodological advances offer potential for increased use of ‘natural experiments’. Such studies would improve the quality of the evidence base.
Early in the pandemic, institutional leadership recognised the importance of providing staff with practical, clinically based communication resources. This paper describes the process of cultivating and disseminating rapid communication resources across a multisite institution to assist others who may need to rapidly respond to communication challenges in the future.
In April 2020, the Mayo Healthcare Incident Command System charged the Center for Palliative Medicine with developing and disseminating clinical communication resources within several weeks. The Education Chair for the Center for Palliative Medicine created a COVID-19 communication task force composed of clinician-educators with expertise in serious illness communication from all three academic Mayo Clinic sites. The task force elected to focus on providing accessible, just-in-time online content curated from existing resources and adapted to situational needs.
The task force developed one-page resources with example language on 16 topic areas. Topics included exploring patient values, discussing time-limited trials and making recommendations. The COVID-19 communication website was launched on 28 May, 6 weeks after the institutional request.
Key takeaway lessons were the need for: (1) alignment with institutional need and priority, (2) rapid team formation with communication education experts across a variety of institutional geographic settings, (3) quick consensus on topic and content delivery to be practically helpful to clinicians, (4) collaboration with outside groups to use and adapt already available resources when possible and (5) early and iterative involvement with information specialists to help facilitate institutional dissemination.
Heart failure (HF) portends significant morbidity and mortality. Integrating palliative care (PC) with HF management improves quality of life and preparedness planning. At a Veterans Affairs hospital, PC was used in 6.5% of patients admitted for HF from October 2019 to September 2020. We sought to increase the percentage of referrals to PC to 20%.
PC referral guidelines were developed and used to screen all HF admissions between October 2020 and May 2021. Point-of-care education on the benefits of PC was delivered to teams caring for patients who met PC referral criteria. Changes were tested using Plan–Do–Study–Act (PDSA) cycles. Results were analysed using run charts.
During the study period, there were 109 HF admissions in patients who were not already followed by PC. Thirty-one (28%) received a new PC consult. The mean age was 81±9.5 years, median B-type natriuretic peptide was 1202 pg/mL, and mean length of stay was 8±5 days. After our intervention, there was an upward shift in the percentage of new referrals to PC with 6 values above the baseline median, which represents a significant change.
Through multiple PDSA cycles, referrals to PC for patients admitted with HF increased from 6.5% to 28%. Point-of-care education was an effective tool to teach medical teams about the benefits of PC. Inpatient teams more consistently and independently considered PC for patients with HF, representing a cultural shift. This quality improvement model may serve as a paradigm to improve the care of HF patients.
Most people prefer to die at home. Timely and appropriate provision of assistive technology can support people to remain at home in the palliative phase. A state-wide palliative care equipment programme (PCEP) was established in Queensland, Australia, to support coordinated assistive technology provision. The objective of this study was to identify population-wide palliative care equipment needs and their relationship to primary diagnostic categories.
A retrospective, cross-sectional analysis of equipment provided over a 19-month period was conducted. This included types of equipment provided and characteristics of the participants such as rurality, age and diagnostic category.
There were 13 764 approved equipment requests, with a median time between equipment application and death being around 35 days. There were significant differences in the types of equipment typically required across diagnostic categories.
The findings from the study can provide a benchmark for the development of population-wide PCEPs. For practitioners who are new to palliative care, typical trajectories of equipment needs by diagnostic group can help guide equipment planning.
Prognostic tools with evidence for external validity in routine clinical practice are needed to align care with patients’ preferences and deliver timely supportive services. Current models have limited, if any, evidence for external validity and none have been implemented and evaluated in clinical practice on a large scale. This study sought to provide evidence for external validity in a real life setting of the Cohen prognostic model that integrates actuarial factors with the ‘Surprise Question’ to assess 6-month, 12-month and 18-month survival of prevalent haemodialysis patients.
Cross-sectional study of 1372 patients in a Canadian university-based programme between 2010 and 2019. Survival probabilities were compared with observed survival. Discrimination and calibration were assessed through predicted risk-stratified observed survival, cumulative AUC, Somer’s Dxy and a calibration slope estimate.
Discrimination performance was moderate with a C statistic of 0.71–0.72 for all three time points. The model overpredicted mortality risk with the best predictive accuracy for 6- month survival. The differences between observed and mean predicted survival at 6 months, 12 months and 18 months were 3.2%, 8.8% and 12.9%, respectively. Kaplan-Meier curves stratified by Cox-based risk group showed good discrimination between high-risk and low-risk patients with HR estimates (95% CI): C2 vs C1 3.07 (1.57–5.99), C3 vs C1 5.85 (3.06–11.17), C4 vs C1 13.24 (6.91–25.34)).
The Cohen prognostic model can be incorporated easily into routine dialysis care to identify patients at high risk for death over 6 months, 12 months and 18 months and help target vulnerable patients for timely supportive care interventions.
Official data reports from countries where assisted suicide and euthanasia is legal are an important resource for discerning participation rates, patient safety and transparency in the way that assisted dying is legal. We aimed to identify what information is published in official data reports on assisted suicide and euthanasia across jurisdictions.
We searched for official data reports from every jurisdiction where assisted suicide or euthanasia is legal. Searches were conducted on these countries’ official health authority websites as well as on mainstream search engines. The data measures included within each report were described in four categories: participation data, patient characteristics, clinician characteristics, and drugs and dying process.
We found that 16 jurisdictions where assisted suicide or euthanasia is currently legal regularly publish data reports regarding its practice. The information included within these official reports varies greatly, with few measures published across all or most jurisdictions.
Differences in the kinds of information published within official reports on assisted suicide and euthanasia makes comparing the practice of assisted suicide and euthanasia across jurisdictions challenging. Many jurisdictions fail to report data measures, which could be valuable to the understanding of assisted suicide and euthanasia practices within that country. Improving data reporting across jurisdictions where assisted suicide and euthanasia is legal, for example, through establishing minimum requirements for data collection and reporting, is an important step towards ensuring patient safety and the transparent practice of assisted suicide and euthanasia.
Enhanced supportive care (ESC) is the early implementation of supportive care in cancer. In England, this model is being developed to support patients with treatable but not curable cancer and implements a multiprofessional approach.
To describe the workforce and cost-effectiveness of an outpatient ESC service in a tertiary cancer centre in England.
Workforce costs to deliver ESC to 265 patients was collected. Service impact on secondary care usage in the last year of life was compared against the regional and national average derived from the National Health Service Digital Secondary Uses Service dataset.
Our ESC service required the input of seven professional groups and cost £125 542 for 12 months. ESC patients had an average of 1.72 fewer admissions per patient per last year of life than the national average. Length of stay was reduced from an average of 9.2 days to 4.78 days per admission in the last year of life. The reduced secondary care usage saved £2 398 537.68.
Outpatient ESC in this cohort required an multidisciplinary team approach and saved money through secondary care use reduction.
Hand-foot syndrome (HFS) is one of the most common toxicities experienced by patients receiving systemic chemotherapy agents such as capecitabine and multikinase inhibitors such as sorafenib. Several randomised controlled trials (RCTs) have investigated the efficacy and safety of prophylactic agents such as pyridoxine, celecoxib, urea cream and cystine/theanine in managing HFS. This network meta-analysis (NMA) evaluated data from high-quality trials to provide strong evidence in forming recommendations to prevent systemic cancer therapy-induced HFS.
To examine the comparative efficacy and safety of interventions for preventing systemic chemotherapy-induced HFS in patients with cancer.
We searched PubMed, Embase and clinical trial registry for RCTs of interventions for preventing HFS. Bayesian NMA was performed to estimate the OR with 95% credible intervals (CrI) from both direct and indirect evidence. The outcome measures were the incidence of HFS (grade ≥1) and moderate to severe HFS (grade ≥2). Adverse drug reactions were discussed descriptively.
A total of 15 RCTs with 2715 patients with 12 prophylactic strategies were included. The analysis showed only celecoxib could significantly prevent the incidence of moderate to severe HFS (grade ≥2) (OR 0.29, 95% CrI 0.13 to 0.68). But none of the preventive interventions could prevent the incidence of HFS (grade ≥1).
Only celecoxib (200 mg two times per day) showed significant prevention of the incidence of moderate to severe HFS. Pyridoxine (400 mg once daily) and urea cream (10%) have to be evaluated further in larger randomised trials.
Hospice and home palliative care have been associated to a reduction of aggressive treatments in the end-of-life, but data in the Italian context are scanty. Therefore, we aim to investigate the role of palliative care on indicators of end-of-life intensity of care among patients with cancer in Lombardy, the largest Italian region.
Within a retrospective study using the healthcare utilisation databases of Lombardy, Italy, we selected all residents who died in 2019 with a diagnosis of cancer. We considered as exposure variables admission to palliative care and time at palliative care admission, and as indicators of aggressive care hospitalisations, diagnostic/therapeutic procedures, in-hospital death, emergency department visits and chemotherapy over a time window of 30 days before death; chemotherapy in the last 14 days was also considered.
Our cohort included 26 539 individuals; of these, 14 320 (54%) were admitted to palliative care before death. Individuals who were admitted to palliative care had an odds ratio (OR) of 0.27 for one hospitalisation, 0.14 for ≥2 hospitalisations, 0.25 for hospital stay ≥12 days, 0.38 for minor diagnostic/therapeutic procedures, 0.18 for major diagnostic/therapeutic procedures, 0.02 for in-hospital death, 0.35 for one emergency department visit, 0.29 for ≥2 emergency department visits and 0.66 for chemotherapy use in the last 30 days; the OR was 0.56 for chemotherapy use in the last 14 days.
This large real-world analysis confirms and further support the importance of palliative care assistance for patients with cancer in the end- of- life; this is associated to a significant reduction in unnecessary treatments.
Palliative care needs to embrace research to guide service development and effective symptom management. Healthcare professionals often feel research is too burdensome for patients who have poor performance status or are near the end of life. Many studies exclude these groups from participating.
We aimed to identify whether specialist palliative care inpatients would wish to take part in research and whether preference varies according to study design, demographics, diagnosis, performance status and prognosis.
100 inpatients in two National Health Service specialist palliative care units and one independent hospice in the Northeast of England completed a short questionnaire about preferences for involvement in research.
92% of participants stated they were interested in being involved in research. This was mostly unaffected by age, diagnosis, prognosis, performance and socioeconomic status. Three-quarters were within the last 3 months of life. Simple questions or interviews were the preferred methodology, whereas only half of patients would want further investigations or additional medications and fewer still wanted to participate in online activities, lifestyle change or group activities.
Palliative care inpatients welcome the opportunity to be involved in research and should not be excluded on the grounds of advanced disease, poor prognosis and low performance status.
This study aimed to explore whether thyroid-stimulating hormone (TSH) plays an early warning role in detecting progression of bacterial infection to sepsis and can serve as a novel marker for the diagnosis of sepsis.
This was a prospective study of patients treated for ‘bacterial infection’ in the emergency department of Beijing Chaoyang Hospital from 1 January 2021 to 31 August 2021. Subjects were divided into a sepsis group (SG) and a non-SG (NSG), according to whether their condition had progressed to sepsis within 72 hours of admission. Routine blood test results as well as biochemical and thyroid function indices (T4, FT4, T3, FT3) were recorded at the time of admission. TSH, Acute Physiology and Chronic Health Evaluation II scores and Sequential Organ Failure Assessment scores were likewise documented.
A total of 62 patients were enrolled, the SG and the NSG showed significant differences in their levels of TSH. The results indicate that TSH is an early warning marker for sepsis.
TSH plays an early warning role in the diagnosis of bacterial infection progressing to sepsis, having a strong predictive value.
Religion and spirituality are important aspects of many physicians and patients’ lives and may impact their views of death and the way they interact with terminally ill patients, specifically comfort discussing end-of-life care and death and dying. This study explores the religious and spiritual beliefs of resident physicians, if they affect interactions with their patients and if burnout impedes this interaction.
A 28-item questionnaire was administered to residents and fellows at an urban academic hospital.
65 residents and fellows answered the survey. Religiosity but not spirituality correlated with reported comfort interacting with patients dealing with death or dying. Resident specialty, biological sex and spirituality were not associated with comfort and conversations about religion and end-of-life care. The majority (60%) reported that the pandemic has not affected how they speak to their patients about death and dying. Caring for a higher volume of terminally ill patients was not associated with high levels of burnout though 71% reported increased burnout due to COVID-19.
Further research can be done to determine whether additional training or resources should be provided to resident physicians to cope with death and dying in the setting of a pandemic.
Globally, cancer deaths are rising. In low-and-middle-income countries, there is a gap in access to palliative care (PC). We designed a feasibility trial to study the initiation of early PC in patients with cancer in Addis Ababa, Ethiopia.
A randomised controlled trial (RCT) of standard cancer care versus standard cancer care plus in-home PC was conducted. Follow-up was at 8 and 12 weeks. Primary outcomes were: (1) feasibility, (2) patient-reported PC outcomes (African Palliative Care Association Palliative Outcome Scale (APCA POS)), and (3) costs.
Of 95 adults randomised (mean age 49.5 years; 66% female), 27 completed 3 study visits. Of these, 89% had stage III or IV disease. Recruitment was feasible, but attrition was high. APCA POS use was feasible, with significant within-arm improvements: 24% versus 18% reduction (p<0.0002, p<0.0025) in PC versus standard care, respectively. Standard care subjects reported higher out-of-pocket payments (5810 Ethiopian birr) (ETB) and lost wages of informal caregivers (74 900 ETB), multiple times an average Ethiopian salary (3696 ETB).
It is feasible to conduct an RCT of early PC for patients with cancer in Ethiopia. Retention was the biggest challenge. This study revealed opportunities to improve care, and important feasibility results to inform future, larger scale PC research in Ethiopia and beyond.
Literature on disparities in palliative care receipt among extensive stage small cell lung cancer (ES-SCLC) patients is scarce. The purpose of this study was to examine disparities in palliative care receipt among ES-SCLC patients.
Patients aged 40 years or older diagnosed with ES-SCLC between 2004 and 2015 in the National Cancer DataBase (NCDB) were eligible. Two palliative care variables were created: (1) no receipt of any palliative care and (2) no receipt of pain management-palliative care. The latter variable indicated pain management receipt among those who received any palliative care. Log binomial regression models were constructed to calculate risk ratios by covariates. Unadjusted and mutually adjusted models were created for both variables.
Among 83 175 patients, the risk of no palliative care receipt was higher among Blacks compared with Whites in unadjusted and adjusted models (both model HRs 1.02; 95% CIs 1.00 to 1.03, p<0.05). Patients older than 59 years were at a higher risk of not receiving palliative care than younger patients (HR 1.02; 95% CI 1.01 to 1.03 for 59–66, HR 1.04; 95% CI 1.03 to 1.05 for 66–74, HR 1.06; 95% CI 1.05 to 1.08 for >74). Among 19 931 patients, the risk of no pain management-palliative care was higher among black patients on unadjusted analysis (HR 1.02; 95% CI 1.00 to 1.03, p<0.05). Patients between 66 and 74 years were at a higher risk of not receiving pain management-palliative care than patients younger than 59 years (HR 1.02; 95% CI 1.00 to 1.03, p<0.05).
Significant disparities exist in palliative care receipt among ES-SCLC patients.
This paper examines the impact of the Medical Aids Subsidy Scheme (MASS) Palliative Care Equipment Programme (PCEP), a new initiative across Queensland, Australia, and explores the translational potential of this large scale, comprehensive, government funded programme to other jurisdictions.
The five dimensions of the Reach, Effectiveness, Adoption, Implementation and Maintenance framework were retrospectively applied to MASS PCEP, with primary programme data compared with data from secondary sources.
Extensive Reach and Adoption of the programme was demonstrated, with 3695 unique clients accessing the programme from the 17 Queensland hospital and health services. Seventy-four per cent of clients had a cancer diagnosis. Operationalising Effectiveness, Implementation and Maintenance dimensions revealed many positive programme aspects at individual and organisational levels, as well as ongoing challenges including transporting equipment to rural and remote regions and the impact on the workforce to respond to referrals and prescribe assistive products. Programme participants had a shorter public hospital stay (4.5 days), compared with the Queensland palliative care average (7.1 days).
The programme has high translational potential to other jurisdictions. Assistive equipment at the end stages of life may enhance well-being by extending time spent at home, increasing independence and reducing carer burden.
Patients with advanced hepatocellular carcinoma (HCC) have specific palliative care needs owing to the influence of the disease on abdominal pain, jaundice, bleeding, appetite, ascites, liver function and hepatic encephalopathy. This research would help develop care models and identify knowledge gaps in the field.
To identify the palliative care needs and experiences of patients with advanced HCC.
CINAHL, EMBASE and MEDLINE were used to search English literature from January 1998 to March 2022 for ‘Palliative care’ and ‘Hepatocellular cancer’ using precise inclusion and exclusion criteria.
The retrieves identified 2710 records, including 33 studies used in our research. Two additional studies were grey items. Among 35 studies, 13 studies were performed in Asia, 11 studies in North America, 8 studies in Europe and 3 studies in Australia. Quantitative investigations were mostly descriptive or observational. Eight studies were conducted on a national scale, while two were in specific regions. 20 studies were conducted by a single institution. 22 studies focused only on patients, 2 on family caregivers and 2 on healthcare professionals. 2 more studies concentrated on patients and family caregivers, while 6 concentrated on patients and healthcare professionals.
This scoping study illustrates the complexity of advanced HCC treatment and challenges in modern healthcare systems. Formulating appropriate referral criteria, integrating and coordinating care, and assessing care contents are crucial. To enhance the treatment of patients with advanced HCC, it is important to understand the relationships between research and service design across teams, disciplines and care settings.
Bereaved people need a supportive response from those around them. Knowing children’s and surviving parents' needs following parental death is the first step to ensuring a supportive response. However, no systematic review has reported on this phenomenon.
To systematically identify and synthesise qualitative literature exploring support experiences of parentally bereaved children and surviving parents.
Systematic review with thematic synthesis, following Preferred Reporting Items for Systematic Reviews and Meta-Analysis guidelines. MEDLINE, Embase, PsycINFO, CINAHL and the British Nursing Database were searched for relevant papers to September 2021. Included studies were appraised for quality and thematically synthesised using Thomas and Harden’s thematic synthesis framework.
Fifteen qualitative studies from nine countries were included. There were four analytical themes from the children’s perspectives (1) Openness of communication with children about death and dying, (2) Children’s challenges of managing change, (3) Navigating emotions, and (4) Children’s acceptability, access and engagement with support. There were three analytical themes from the parents' perspectives: (1) Adjusting as a parent, (2) Supporting their children, and (3) Parent’s acceptability, access and engagement with support.
Following a parental death, open and honest communication and involvement in what is happening within the family will help children cope. Both children and parents suppress emotions and avoid conversations to protect each other and those around them. A taboo around death exists and constrains the support some families receive. Childhood bereavement is a public health issue, with a need for professionals and communities to better understand and respond to the needs of bereaved families.
CRD42020166179
We aimed to estimate the potential population that requires palliative care, clarify the relationship between this population and the rate of ageing in Japan, and compare these trends with those of other countries.
We used the national death registration data and population projections for Japan to estimate the population in need of palliative care using the minimal estimate method developed by Murtagh et al. Linear regression was used to create a model of mortality using sex, age at intervals of 5 years, and each major disease classification. We calculated the future population in need of palliative care until 2040 and compared the ageing data to those of other countries.
All adults in Japan who died from 1980 to 2040 at intervals of 5 years.
The number of people who might need palliative care from 2020 to 2040 will also increase linearly from 1 059 000 to 1 405 000. The proportion of Alzheimer’s, dementia and senility of the total need for palliative care will increase to 43.4% in 2040. The correlation coefficient between the proportion of the population in need of palliative care and the rate of ageing was 0.24 in developed countries.
In Japan, the population requiring palliative care in 2040 will be 1.5 times that in 2015. Palliative care needs to be provided urgently for people with Alzheimer’s disease, dementia and senility. The proportion of patients in need of palliative care may not change, although the number of patients requiring such gradually increases in developed countries.
Little is known about the factors leading to a change in goals of care (CGC) in patients with an acute ischaemic stroke (AIS). Our aim was to analyse the proportion and outcome of such patients and identify medical predictors of a CGC during acute hospitalisation.
We retrospectively reviewed all patients who had an AIS over a 13-year period from the prospectively constructed Acute Stroke Registry and Analysis of Lausanne. We compared patients with a CGC during the acute hospital phase to all other patients and identified associated clinical and radiological variables using logistic regression analysis.
A CGC decision was taken in 440/4264 (10.3%) consecutive patients who had an AIS. The most powerful acute phase predictors of a CGC were transit through the intensive care unit, older age, pre-existing disability, higher stroke severity and initial decreased level of consciousness. Adding subacute phase variables, we also identified active oncological disease, fever and poor recanalisation as predictors. 76.6% of the CGC patients died in the stroke unit and 1.0% of other patients, and 30.5% of patients with a CGC received a palliative care consultation. At 12 months, 93.6% of patients with CGC had died, compared with 10.1% of non-CGC patients.
Over three-quarters of AIS patients with CGC died in hospital, but less than a third received a palliative care consultation. The identified clinical and radiological predictors of a CGC may allow physicians to initiate timely the decision-making process for a possible CGC.
Despite the evidence of palliative care benefits, referrals are infrequent and delayed. Patients and their caregivers are essential stakeholders in the referral process with valuable perspectives. This review systematically explored their perceived facilitators and barriers to palliative care referral.
4 subject-specific databases (PubMed, Cumulative Index to Nursing and Allied Health Literature, PsycINFO and EMBASE), 3 multidisciplinary databases (SCOPUS, Web of Science and Cochrane database) and 11 journals from 1 January 1990 to 31 May 2022 were searched; and scored for their methodological rigour using Hawker’s tool. Findings were synthesised using Popay’s Narrative Synthesis method and interpreted using decision-making theory.
4 themes were generated from 14 studies: (1) The timing of referral should be right and communication must be comprehensive. Delays in initiating serious illness conversations, prognostication, and decision-making hindered referral. In contrast, the presence of symptoms facilitated it. (2) Referral was equated to death, and as an inferior form of treatment, a rebranding might mitigate the stigma. (3) Referral made families feel emotional and devastated; explanation and team initiatives enabled the normalisation and positive coping. (4) Long-term holistic palliative care facilitated a positive care experience and a sense of reassurance and satisfaction, enabling a smooth transition from curative to comfort care. The late referral was associated with perceived inadequate symptom management, diminished quality of life and death and complicated bereavement issues.
Patients’ and caregivers’ predisposition to palliative care engagement was influenced by timely referral, comprehensive communication, perception and stigma about palliative care. Longitudinal association with the palliative care team mitigated negative perceptions and improved satisfaction and coping.
CRD42018091481.
Hospice care in the Netherlands is provided in three different types of hospice facilities: volunteer-driven hospices (VDH), stand-alone hospices (SAHs) and hospice unit nursing homes (HU). The organisational structures range from care directed by trained volunteers in VDH to care provided by multiprofessional teams in SAH and HU units.
This study aims to characterise the patient populations who access Dutch hospices and describe the patient profiles in different hospice types.
A retrospective cohort study using clinical records of adult hospice inpatients in 2017–2018 from a random national sample of hospices.
In total 803 patients were included from 51 hospices, mean age 76.1 (SD 12.4). 78% of patients had a primary diagnosis of cancer, 3% identified as non-Dutch cultural background and 17% were disorientated on admission. At admission, all patients were perceived to have physical needs. Psychological needs were reported in 37%, 36% and 34%, social needs by 53%, 52% and 62%, and existential needs by 23%, 30% and 18% of patients in VDH, SAH, HU units, respectively. 24%, 29% and 27% of patients from VDHs, SAHs and HUs had care needs in three dimensions, and 4%, 6% and 3% in all four dimensions.
People who access Dutch hospices predominantly have cancer, and have a range of physical, psychological, social and existential needs, without substantial differences between hospice types. Patients with non-malignant disease and non-Dutch cultural backgrounds are less likely to access hospice care, and future policy would ideally focus on facilitating their involvement.
To assess possible trends between 2009 and 2019 in the Netherlands of palliative care indicators: the provision of palliative care or treatment, hospitalisations in the last month before death, use of specialised palliative care services and place of death.
The study design was a repeated retrospective cross-sectional design with questionnaires filled in by general practitioners within a clustered sample of 67 Sentinel practices. Patients whose death was non-sudden, and thus could have received palliative care, between 1 January 2009 and 31 December 2019 were included in the study, resulting in 3121 patients.
Between 2009 and 2019, there is a significant increase in the number of people who receive palliative care or treatment alongside life-prolonging or curative treatment and the number of people who die at home, while the number of hospitalisations in the last month before death and the number of people dying in hospital shows a significant decrease. However, there is no trend in the involvement of specialised palliative care services or people receiving solely palliative care or treatment.
This study suggests improvements in end-of-life care provided in primary care in the Netherlands. Trends coincided with increased attention to palliative care both in practice and policy. Yet, there is still considerable room for improvement as there is no significant increase in people solely receiving palliative care or treatment and the involvement of specialised palliative care services.
End-of-life experiences (ELEs), such as deathbed visions (DBVs), have been reported worldwide. However, ELEs have rarely been discussed in clinical practice, possibly because of the different perceptions of ELEs among clinicians and families. Therefore, this study aimed to investigate the differences in perception regarding ELEs, especially DBVs, between clinicians and families.
We conducted a multicentre, prospective and observational study with patients with cancer. After the patients’ death, clinicians recorded their perceptions of patients’ ELEs during the palliative care unit admission, and bereaved families responded to a questionnaire about ELEs. The primary outcome was the frequency and concordance of DBVs from the perspective of bereaved family members and clinicians. The second outcome was each group’s frequency of terminal lucidity and terminal coincidence.
The study included 443 patients. DBVs were reported more frequently by family members than clinicians (14.0% vs 2.7%, p<0.001). Among family members, terminal lucidity and terminal coincidence were observed at 7% and 7.9%, respectively, while only one case each was reported by clinicians.
Clinicians and family members may perceive ELEs differently. Enabling patients and their families to talk about ELEs would assist in optimising grief care.
Environmental sustainability is an important concern within the National Health Service. Compared with other specialties, there has been little research within palliative care. This study aims to calculate the carbon footprint of a specialist palliative care unit.
Resources grouped into medical, non-medical, travel, energy and waste were collected for the year 2021 in a hospice in the South West of England. Following a top-down approach, the activity used for each resource was multiplied by an emissions factor to calculate the carbon footprint. Staff attitudes were also surveyed.
The hospice carbon footprint was calculated as 420 tonnes kgCO2e. Travel (35%) was the highest contributor to emissions followed by gas (33%) and non-medical supplies (17%). There were 95 responses to the staff survey (59% response rate) with strong enthusiasm towards sustainable practices.
This is the first study to estimate the carbon footprint of a specialist palliative care unit. Compared with other specialties, palliative care has relatively low greenhouse gas emissions. Identifying sources of carbon equivalent production can be a first step into developing interventions to reduce this use. Our carbon footprint study will be used by the Hospice Sustainability Group to reduce our unit’s carbon footprint.
With an increasing ageing population in most countries, the role of general practitioners (GPs) and general practice nurses (GPNs) in providing optimal end of life (EoL) care is increasingly important.
To explore: (1) patient and carer expectations of the role of GPs and GPNs at EoL; (2) GPs’ and GPNs’ contribution to advance care planning (ACP) and (3) if primary care involvement allows people to die in the place of preference.
Systematic literature review. Data sources: Papers from 2000 to 2017 were sought from Medline, Psychinfo, Embase, Joanna Briggs Institute and Cochrane databases.
From 6209 journal articles, 51 papers were relevant. Patients and carers expect their GPs to be competent in all aspects of palliative care. They valued easy access to their GP, a multidisciplinary approach to care and well-coordinated and informed care. They also wanted their care team to communicate openly, honestly and empathically, particularly as the patient deteriorated. ACP and the involvement of GPs were important factors which contributed to patients being cared for and dying in their preferred place. There was no reference to GPNs in any paper identified.
Patients and carers prefer a holistic approach to care. This review shows that GPs have an important role in ACP and that their involvement facilitates dying in the place of preference. Proactive identification of people approaching EoL is likely to improve all aspects of care, including planning and communicating about EoL. More work outlining the role of GPNs in end of life care is required.
Because the heterogeneity of patients in intensive care units (ICUs) and family members represents a challenge to palliative care delivery, we aimed to determine if distinct phenotypes of palliative care needs exist.
Prospective cohort study conducted among family members of adult patients undergoing mechanical ventilation in six medical and surgical ICUs. The primary outcome was palliative care need measured by the Needs at the End-of-Life Screening Tool (NEST, range from 0 (no need) to 130 (highest need)) completed 3 days after ICU admission. We also assessed quality of communication, clinician–family relationship and patient centredness of care. Latent class analysis of the NEST’s 13 items was used to identify groups with similar patterns of serious palliative care needs.
Among 257 family members, latent class analysis yielded a four-class model including complex communication needs (n=26, 10%; median NEST score 68.0), family spiritual and cultural needs (n=21, 8%; 40.0) and patient and family stress needs (n=43, 31%; 31.0), as well as a fourth group with fewer serious needs (n=167, 65%; 14.0). Interclass differences existed in quality of communication (median range 4.0–10.0, p<0.001), favourable clinician–family relationship (range 34.6%–98.2%, p<0.001) and both the patient centredness of care Eliciting Concerns (median range 4.0–5.0, p<0.001) and Decision-Making (median range 2.3–4.5, p<0.001) scales.
Four novel phenotypes of palliative care need were identified among ICU family members with distinct differences in the severity of needs and perceived quality of the clinician–family interaction. Knowledge of need class may help to inform the development of more person-centred models of ICU-based palliative care.
There is a growing interest in developing a scientific research metric to assess the level of palliative care (PC) development in countries. This study assesses a metric based on publishing in specialised PC journals as an indicator for the level of PC development.
A 3-year average articles per million population per year (3y-AAMY) metric was calculated using documents published in 19 specialised PC journals indexed in Scopus database. Countries were categorised into six levels starting with level ‘0’ with no publications then levels Q1 to Q5 according to the 3y-AAMY quintiles (Q5=best performance). The relationship between the 3y-AAMY and the level of PC development in countries and opioid consumption figures was tested.
During 2016–2018, 6610 eligible documents were published in the selected 19 journals. The median (IQR) 3y-AAMY of 191 countries was 0.0123 (0–0.237). The 3y-AAMY differed significantly among the levels of PC development, being 0 (IQR:0–0) for category 1 (no known activity) countries and 1.129 (IQR:0.286–4.625) for category 4B (advanced integration) countries (Kruskal-Wallis test p<0.000001 and Jonckheere-Terpstra trend test p<0.00001). The correlation between the 3y-AAMY and average opioid consumption was a highly significant positive one (Spearman’s =0.681, p<0.0001). Furthermore, opioid consumption differed significantly between the 3y-AAMY categories being highest for Q5 countries (Kruskal-Wallis test p<0.000001 and Jonckheere-Terpstra trend test p<0.00001).
A metric based on publishing in specialised PC journals correlates significantly with the levels of PC development and opioid consumption in countries and may be used alongside other indicators for the assessment of PC development.
Three-dimensional printing (3DP) enables the production of highly customised, cost-efficient devices in a relatively short time, which can be particularly valuable to clinicians treating patients with palliative care intent who are in need of timely and effective solutions in the management of their patients’ specific needs, including the relief of distressing symptoms.
Four online databases were searched for articles published by December 2020 that described studies using 3DP in palliative care. The fields of application, and the relevant clinical and technological data were extracted and analysed.
Thirty studies were reviewed, describing 36 medical devices, including anatomical models, endoluminal stents, navigation guides, obturators, epitheses, endoprostheses and others. Two-thirds of the studies were published after the year 2017. The main reason for using 3DP was the difficulty of producing customised devices with traditional methods. Eleven papers described proof-of-concept studies that did not involve human testing. For those devices that were tested on patients, favourable clinical outcomes were reported in general, and treatment with the use of 3DP was deemed superior to conventional clinical approaches. The most commonly employed 3DP technologies were fused filament fabrication with acrylonitrile butadiene styrene and stereolithography or material jetting with various types of photopolymer resin.
Recently, there has been a considerable increase in the application of 3DP to produce medical devices and bespoke solutions in the delivery of treatments with palliative care intent. 3DP was found successful in overcoming difficulties with conventional approaches and in treating medical conditions requiring highly customised solutions.
Establishment of code status can be challenging in the acute care setting. The primary objective of the present study was to evaluate whether patients or their surrogate decision-makers were comfortable watching an educational video about resuscitation.
This interventional pilot study involved a pre- and a postintervention survey of a convenience sample of emergency department (ED) patients who were admitted to the hospital. The study was conducted at an academic level-1 trauma centre within the normal flow of patient care over 4 months in 2017.
In total, 50 patients enrolled in the study. Among them, 82% were ‘very comfortable’ and 14% were ‘moderately comfortable’ watching the video. Overall, 61% of respondents were ‘very comfortable’ recommending the video to others. Watching the video resulted in a change in code status for 9 patients.
Our results indicate that patients felt comfortable watching the video and recommending the video for further use. Watching the video did not result in a change in code status for most patients in this study. The study results indicate that a standardised patient education video on resuscitation code status was acceptable to patients and their family members and has potential for increased use in the ED.
To evaluate the determining factors of severe functional impairment (SFI) outcome at discharge and in-hospital mortality in patients who had an acute ischaemic stroke and thus favouring early implementation of primary palliative care (PC).
A retrospective descriptive study by the analysis of 515 patients who had an acute ischaemic stroke admitted at stroke unit, aged≥18 years, from January 2017 to December 2018. Previous clinical and functional status data, National Institute of Health Stroke Scale (NIHSS) on admission, and data related to the evolution during hospitalisation were evaluated, relating them to the SFI outcome at discharge and death. The significance level was set at 5%.
Of 515 patients included, 15% (77) died, 23.3%(120) had an SFI outcome and 9.1% (47) were evaluated by the PC team. It was observed that NIHSS Score≥16 is responsible for a 15.5-fold increase in the occurrence of death outcome. The presence of atrial fibrillation was responsible for a 3.5-fold increase in the risk of this outcome.
NIHSS Score is an independent predictor of in-hospital death and SFI outcomes at discharge. Knowledge about the prognosis and risk of developing unfavourable outcomes is important for planning the care of patients affected by a potentially fatal and limiting acute vascular insult.
Phase I clinical trials usually include patients with advanced disease who have failed standard therapies and should benefit from early palliative care. We try to assess whether PALLIA 10, a score developed in France to help identify patients who might benefit from a palliative care referral, could be used in a phase I department trial.
We assessed PALLIA 10 score and other prognostic factors in patients enrolled in phase I trials at Gustave Roussy Cancer Center prospectively during two periods of time (cohort 1 (C1) and 2 (C2)). A double-blind assessment of the PALLIA 10 score was done in C2 by a palliative care specialist and a nurse.
From 1 July 2018 to 1 November 2018 (C1) and from 1 December 2020 to 16 April 2021 (C2), 86 patients were assessed in C1 and 302 in C2. Median PALLIA 10 was very low in both cohorts (median 1, range 1–5 in C1 and 1–8 in C2). On C1 and C2, 12% and 5% of patients had a dedicated palliative consultation. In C2, assessment of PALLIA 10 score was significantly different between palliative care physician (median 5, range 3–8), phase I physician (median 1, range 1–6) and phase I nurse (median 3, range 1–8) (p<0.001).
Median PALLIA 10 score was low when assessed by the phase I physician, which suggests the need for a better tool and appropriate clinician’s education to implement early palliative care in clinical practice and trials.
We aimed to develop and validate a new emergency triage tool for use on patients with cancer undergoing palliative care (PC).
In phase I, the new tool was developed after literature review and expert committee meetings. A prospective longitudinal study in phase II assessed the interobserver reliability of the tool. In phase III, a retrospective study of administrative data, the feasibility of routine use of the new tool and the associations with hospitalisation and survival times were evaluated.
The palliative care triage system (PCTS) was composed of check-list items and four colour-coded categories for maximum response time. In phase II, the PCTS was independently evaluated by two nurses for 102 attendances in the emergency department of the PC unit. An absolute agreement of 87.3% and a weighted kappa of 0.81 were observed. In phase III, all 493 attendances had the PCTS assessment registered in the medical records. The PCTS categories were associated with hospital admission (p<0.001) and survival times (p<0.001).
PCTS is a feasible tool to be used in routine ED triage of patients with advanced cancer undergoing PC. It is a valid instrument for predicting hospital admission rates and survival with high interobserver concordance rates.
Caregivers play a major role in providing all the support and care in daily activities for their relatives with dementia. To fully describe the influence of dementia caregiving on family caregivers’ life, we conducted a systematic review including caregivers’ perceptions about the positive and negative aspects of caring and the expressed factors.
We conducted a systematic review including articles from January 1998 to July 2020. Qualitative studies reporting family caregivers’ perceptions about their experiences and the effects/impact of dementia caregiving were eligible. Two authors extracted the data independently, and the analysis focused on the positive and negative aspects of dementia caregiving in caregivers’ life.
Eighty-one studies with 3347 participants were included in this review. The positive aspects of caregiving in caregivers’ life encompass personal accomplishment and strengthening relationships, which were enhanced by good medical counselling/formal care support and family/friends support. The negative aspects included emotional and social aspects experienced by caregivers. Other factors such as inappropriate medical/formal care support, illness progression and the costs of dementia contributed to negative appraisal.
The findings provide insights into the holistic experience of caring for a person with dementia revelling the major positive and negative aspects underlying the caregiver role. The evidence emphasises the need ‘to focus on positive aspects’ and targeted interventions aimed at reducing the negative impact of caregiving, which has serious consequences on caregivers’ quality of life. A multicomplex intervention for dementia informal caregiving should be developed, committing the society to promote mental health, address these community needs and improve the quality of life of the person with dementia and their family caregivers.
People who die from cancer (cancer decedents) may experience unpleasant and distressing symptoms which cause them to present to unscheduled care. Unscheduled care is unplanned care delivered by general practitioner out-of-hours and emergency departments. Use of unscheduled care can disrupt treatment plans, leading to a disjointed patient care and suboptimal outcomes.
This systematic review aimed to identify factors associated with unscheduled care use by cancer decedents.
Systematic review with narrative synthesis of seven electronic databases (PubMed; Medline; Embase; Cochrane Database of Systematic Reviews; Cochrane Central Register of Controlled Trials; Web of Science; Cumulative Index to Nursing and Allied Health Literature) from inception until 01 January 2020. All observational and experimental studies were included, irrespective of their research design.
The search yielded 238 publications included at full-text, of which 47 were included in the final review and synthesis. Unscheduled care use by cancer decedents was influenced by multiple factors, synthesised into themes: demography, clinical and patient, temporal, prescribing and systems. Cancer decedents who were older, men, had comorbidities, or lung cancer, were most likely to use unscheduled care. Unscheduled care presentations were commonly due to pain, breathlessness and gastrointestinal symptoms. Low continuity of care, and oncology-led care were associated with greater unscheduled care use. Access to palliative care, having an up-to-date palliative care plan, and carer education were associated with less unscheduled care use.
The review identifies multiple factors associated with unscheduled care use by cancer decedents. Understanding these factors can inform future practice and policy developments, in order to appropriately target future interventions, optimise service delivery and improve the patient journey.
CRD42016047231.
To investigate the efficacy and safety of pegfilgrastim administered on the day of chemotherapy completion (same day) versus at least 1 day after chemotherapy (next day).
We searched relevant literature published before April 2020 from the following databases: Embase, PubMed, Cochrane databases and Web of science.
One randomised controlled trial and 12 observational studies met all of the prespecified criteria for eligibility. The meta-analysis showed a significantly higher febrile neutropenia (FN) rate for the same-day group than that for the next-day arm in the first chemotherapy cycle (OR=2.56, 95% CI 1.19 to 5.48, p=0.02), and in all chemotherapy cycles (OR=1.54, 95% CI 1.29 to 1.84, p<0.00001). Results of subgroup analysis showed a higher FN rate in the same-day arm than in the next-day group for patients with breast cancer (OR=5.50, 95% CI 2.29 to 13.23, p=0.0001) and lymphoma (OR=1.53, 95% CI 1.00 to 2.34, p=0.05). The pooled analysis of studies on gynaecological malignancies showed that patients in the same-day group had a higher incidence of bone pain (OR=1.30, 95% CI 1.01 to 1.68, p=0.04) and a lower incidence of chemotherapy delay (OR=0.71, 95% CI 0.53 to 0.96, p=0.03) compared with the next-day group.
Same-day administration of pegfilgrastim resulted in increased incidence of FN compared with the next-day schedule. This is especially true for patients with breast cancer or lymphoma. These results do not support same-day administration of pegfilgrastim .
Providing palliative care patients living at home with timely access to medicines is critical to enable effective symptom management, minimise burden and reduce unplanned use of healthcare services. Little is known about how diverse community-based palliative care models influence medicine access.
To produce a critical overview of research on experiences and outcomes of medicine access in community-based palliative care models of service delivery through a systematic review and narrative synthesis.
MEDLINE, CINAHL, EMBASE, PsycINFO, Cochrane Library databases and grey literature were systematically searched for all types of studies. Study quality was assessed using the Mixed Methods Appraisal Tool; a narrative synthesis was used to integrate and summarise findings.
3331 articles were screened; 10 studies were included in the final sample. Studies included a focus on community pharmacy (n=4), hospice emergency medication kits (HEMKs) in the home (n=3), specialist community nurse prescribers (n=1), general practice (n=1) and one study included multiple service delivery components. Community pharmacy was characterised by access delays due to lack of availability of medicine stock and communication difficulties between the pharmacy and other healthcare professionals. HEMKs were perceived to reduce medicine access time out of hours and speed symptom control. However, the majority of studies comprised small, local samples, largely limited to self-reports of health professionals. There was a lack of data on outcomes, and no comparisons between service delivery models.
Further research is required to understand which models facilitate rapid and efficient access to medicines for community-based palliative care patients.
Gypsy, Traveller and Roma communities are known to experience health inequalities. There has been little focus on palliative care in these communities despite the well-recognised inequalities of access to palliative care in other minority ethnic groups.
Systematic review and thematic analysis of the current evidence concerning palliative care experiences, views and needs of Gypsy, Traveller and Roma communities. Medline, Embase, Emcare, CINAHL, PsycINFO, Web of Science, Scopus, AMED, Global Health, Psychological and Behavioural Sciences Collection and BNI were searched up to November 2020, alongside author and citation searching. NHS England, Hospice UK, National Audit Office and OpenGrey were searched as grey literature sources. Gough’s ‘Weight of Evidence’ framework was used for quality appraisal.
Thirteen papers from eight studies were included in the synthesis. Although there was variation between communities, three overarching and inter-related themes were identified. (1) Strong family and community values include a preference for healthcare to be provided from within the community, duty to demonstrate respect by attending the bedside and illness as a community problem with decision-making extending beyond the patient. (2) Distinct health beliefs regarding superstitions around illness, personal care, death rituals and bereavement. (3) Practical barriers to non-community healthcare provision include communication difficulties, limited awareness of and access to services, tensions between patients and healthcare professionals and lack of training in delivering culturally appropriate care.
A wide range of factors influence Gypsy, Traveller and Roma community access to palliative care. Community diversity requires sensitive and highly individualised approaches to patient care.
42019147905.
Palliative care providers serving Chinese patients lack a culture-specific model of communication, a strong evidence base for this and clear guidance on its application. Thus, providers find it challenging to address patients’ dignity, and determine their priorities and preferences for treatments and care, at the patients’ final stage of life.
This study explores the culture-specific influences and current understanding of end-of-life (EOL) communication in the Chinese context.
A qualitative systematic review of qualitative studies was conducted according to Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. PsycINFO, PubMed and ERIC databases were searched for studies between January 1994 and July 2019, using keywords ‘end of life’, ‘terminal care’, ‘communication’ and ‘Chinese’. Included studies were appraised with Critical Appraisal Skills Programme criteria.
The search strategy yielded 982 entries and 13 studies were included. Six themes were identified in EOL communication in the Chinese context: (1) Chinese philosophies on the meaning of ‘good death’. (2) Negative attitudes towards communication on dying. (3) EOL communication as a taboo topic. (4) Clinician-centred approaches to treatment-decision making. (5) Family expectations being prioritised over patient self-autonomy in prognosis disclosure. (6) Care-providers expressing puzzlement over cultural preferences regarding EOL communication.
The review detailed the complexity of EOL communication in the Chinese context, urging for a communication model distinct from Western-based practices. Future research could explore a validated communication framework that addresses the local culture, thus enabling an understanding of patients’ priorities and interpreting EOL encounters from a cross-cultural perspective.
General practitioners (GPs) and general practice nurses (GPNs) face increasing demands to provide palliative care (PC) or end-of-life care (EoLC) as the population ages. To enhance primary EoLC, the facilitators and barriers to their provision need to be understood.
To provide a comprehensive description of the facilitators and barriers to GP and GPN provision of PC or EoLC.
Systematic literature review. Data included papers (2000 to 2017) sought from Medline, PsycInfo, Embase, Joanna Briggs Institute and Cochrane databases.
From 6209 journal articles, 62 reviewed papers reported the GP’s and GPN’s role in EoLC or PC practice. Six themes emerged: patient factors; personal GP factors; general practice factors; relational factors; co-ordination of care; availability of services. Four specific settings were identified: aged care facilities, out-of-hours care and resource-constrained settings (rural, and low-income and middle-income countries). Most GPs provide EoLC to some extent, with greater professional experience leading to increased comfort in performing this form of care. The organisation of primary care at practice, local and national level impose numerous structural barriers that impede more significant involvement. There are potential gaps in service provision where GPNs may provide significant input, but there is a paucity of studies describing GPN routine involvement in EoLC.
While primary care practitioners have a natural role to play in EoLC, significant barriers exist to improved GP and GPN involvement in PC. More work is required on the role of GPNs.
General practitioners (GPs) and general practice nurses (GPNs) face increasing demands to provide palliative care (PC) or end-of-life care (EoLC) as the population ages. In order to maximise the impact of GPs and GPNs, the impact of different models of care that have been developed to support their practice of EoLC needs to be understood.
To examine published models of EoLC that incorporate or support GP and GPN practice, and their impact on patients, families and the health system.
Systematic literature review. Data included papers (2000 to 2017) sought from Medline, Psychinfo, Embase, Joanna Briggs Institute and Cochrane databases.
From 6209 journal articles, 13 papers reported models of care supporting the GP and GPN’s role in EoLC or PC practice. Services and guidelines for clinical issues have mixed impact on improving symptoms, but improved adherence to clinical guidelines. National Frameworks facilitated patients being able to die in their preferred place. A single specialist PC-GP case conference reduced hospitalisations, better maintained functional capacity and improved quality of life parameters in both patients with cancer and without cancer. No studies examined models of care aimed at supporting GPNs.
Primary care practitioners have a natural role to play in EoLC, and most patient and health system outcomes are substantially improved with their involvement. Successful integrative models need to be tested, particularly in non-malignant diseases. Such models need to be explored further. More work is required on the role of GPNs and how to support them in this role.
Accurate forecasting the life expectancy of patients with cancer is adamantly needed for adequate decision-making in the Palliative Care Services (PCS) context. Nonetheless, physician forecast is often inaccurate, hindering end of life (EOL) decisions. In this study, we determined the prognostic value of two oncology performance status (PS) scales at first referral to PCS.
Retrospective analysis of 6310 patients consecutively admitted to PCS at the Instituto Nacional de Cancerología (2012–2018). Demographic and PS (as per Karnofsky (KPS) and Eastern Cooperative Oncology Group (ECOG) scales) information was retrieved and the overall survival of patients calculated according to PS. Concordance of each scale was assessed in the overall population and according to age.
Overall survival was significantly associated with ECOG and KPS (p<0.05). A total of 2278 (36.1%) and 2296 (36.4%) patients were referred to PCS in their last month of life and most had a poor PS (ECOG 3–4, 59.1%; KPS <50, 54.4%). Both PS scales had high concordance in the overall population (K=0.6189 (KPS); K=0.6058 (ECOG)), but a higher value was observed among the subgroup of patients aged ≥65 (K=0.6339 (KPS); 0.6252 (ECOG)). Concordance was lowest among younger (≤39) patients.
PS as assessed by the most widely known tools is strongly associated with overall survival of patients with cancer attending PCS. No large differences were observed among the scales, though results slightly favour the use of KPS. Early referral to PCS and accurate survival prediction can aid in relevant decision-making for patients approaching EOL.
Hospital remains the most common place of death in the UK, but there are ongoing concerns about the quality of end-of-life care provision in this setting. Evaluation of interventions in the last days of life or after a bereavement is methodologically and ethically challenging.
The aim was to describe interventions at the very end of life and in the immediate bereavement period in acute hospitals, with a particular focus on how these are evaluated.
A scoping review was conducted. Studies were restricted to peer-reviewed original research or literature reviews, published between 2011 and 2021, and written in the English language. Databases searched were CINAHL, Medline and Psychinfo.
From the search findings, 42 studies were reviewed, including quantitative (n=7), qualitative (n=14), mixed method (n=4) and literature reviews (n=17). Much of the current research about hospital-based bereavement care is derived from the intensive and critical care settings. Three themes were identified: (1) person-centred/family-centred care (memorialisation), (2) institutional approaches (quality of the environment, leadership, system-wide approaches and culture), (3) infrastructure and support systems (transdisciplinary working and staff support). There were limited studies on interventions to support staff.
Currently, there are few comprehensive tools for evaluating complex service interventions in a way that provides meaningful transferable data. Quantitative studies do not capture the complexity inherent in this form of care. Further qualitative studies would offer important insights into the interventions.
How quality in healthcare is measured shapes care provision, including how and what care is delivered. In end-of-life care, appropriate measurement can facilitate effective care and research, and when used in policy, highlight deficits and developments in provision and endorse the discipline necessity. The most prevalent end-of-life quality metric, place of death, is not a quality measure: it gives no indication of the quality of care or patient experience in the place of death.
To evaluate alternative measures to place of death for assessing quality of care in end-of-life provision in all settings.
We examine current end-of-life care quality measures for use as metrics for quality in end-of-life care. We categorise approaches to measurement as either: clinical instruments, mortality follow-back surveys or organisational data. We review each category using four criteria: care setting, patient population, measure feasibility, care quality.
While many of the measure types were highly developed for their specific use, each had limitations for measuring quality of care for a population. Measures were deficient because they lacked potential for reporting end-of-life care for patients not in receipt of specialist palliative care, were reliant on patient-proxy accounts, or were not feasible across all care settings.
None of the current end-of-life care metric categories can currently be feasibly used to compare the quality of end-of-life care provision for all patients in all care settings. We recommend the development of a bespoke measure or judicious selection and combination of existing measures for reviewing end-of-life care quality.
Of all doctors, Foundation Year 1 trainees spend the most time caring for dying patients yet report poor preparation and low confidence in providing this care. Despite documented effectiveness of simulation in teaching end-of-life care to undergraduate nurses, undergraduate medicine continues to teach this subject using a more theoretical, classroom-based approach. By increasing undergraduate exposure to interactive dying patient scenarios, simulation has the potential to improve confidence and preparedness of medical students to care for dying patients. The main study objective was to explore whether simulated experience of caring for a dying patient and their family can improve the confidence and preparedness of medical students to provide such care.
A mixed-methods interventional study simulating the care of a dying patient was undertaken with serial measures of confidence using the Self Efficacy in Palliative Care (SEPC) tool. Significance testing of SEPC scores was undertaken using paired t-tests and analysis of variance. Post-simulation focus groups gathered qualitative data on student preparedness. Data were transcribed using NVivo software and interpreted using Thematic Analysis.
Thirty-eight 4th-year students participated. A statistically significant post-simulation increase in confidence was seen for all SEPC domains, with sustained confidence observed at 6 months. Focus group data identified six major themes: current preparedness, simulated learning environment, learning complex skills, patient centredness, future preparation and curriculum change.
Using simulation to teach medical students how to care for a dying patient and their family increases student confidence and preparedness to provide such care.
Acute hospital specialist palliative care teams (SPCTs) improve patient care and reduce length of stay. UK guidance recommends SPCTs provide face-to-face assessments 7 days a week and offer 24-hour telephone advice. Little published data exist on SPCT staffing models.
This paper aims to explore team structure, funding and impact of COVID-19 on SPCTs across the South West (SW) of England (population of nearly six million).
Electronic survey to SPCT clinical leads in 15 SW acute hospitals.
All 15 acute hospitals have an SPCT. There was variability in SPC clinical nurse specialist and consultant availability, 0.27–2.7 whole-time equivalent (WTE) and 0.1–1.5 WTE, respectively, per 250 beds. 13/15 (87%) provide out-of-hours (OOH) palliative care advice with 60% reliant on charity services. Few SW teams meet national guidance for SPC staffing to bed ratios. 8/15 teams reported greater integration with other services during the COVID-19 pandemic.
There is significant variability in SPCT structure and staffing. The charity sector (independent hospices) often provides OOH acute hospital SPC advice. Further research is needed to consider the impact of different SPCT models on patient and family outcomes, and the sustainability and opportunities offered by integration of services and collaboration across care settings during COVID-19.
To study changes in the peer consultation practice of assessing assisted dying requests and its quality among trained ‘Life End Information Forum’ (LEIF) consultants in Belgium between 2008 and 2019.
Cross-sectional surveys conducted in 2008 (N=132) and 2019 (N=527) among all registered LEIF consultants.
The response rate was 75% in 2008 and 57% in 2019. In 2019 compared with 2008, more LEIF consultants were significantly less than 40 years old (25%/10%, p=0.006) and at least 60 years old (34%/20%, p=0.006). In their activities regarding assessments of assisted dying requests over 12 months, we found a significant increase in the number of patients who did not meet the substantive requirements for assisted dying in 2019 compared with 2008 (1–4 patients: 41.1 %/58.8%, p=0.020). In their most recent assessments of an assisted dying request, LEIF consultants in 2019 made significantly more assessments of patients aged 80 years or older than in 2008 (31%/9%, p<0.001), and significantly fewer assessments for patients with cancer (53%/70%, p=0.034). Regarding adherence to quality criteria for consultation, LEIF consultants discussed unbearable suffering (87%/65%, p=0.003) and alternative treatments (palliative: 48 %/13%, p<0.001; curative: 28%/5%, p=0.002) significantly more often with the attending physician.
Changes in peer consultation practice and its quality among LEIF consultants likely reflect changes in assisted dying practice in general, as well as changes in LEIF consultations on more complex cases for which LEIF consultants’ expertise is required.
In palliative care, validated tools for professionals that facilitate day-to-day spiritual conversations with patients and loved ones are scarce. The objective of this study was to validate the Diamond spiritual conversation model across different palliative care settings as well as professional and educational levels.
An online survey was filled in by 387 professionals providing palliative care for patients in hospice, home care, hospital and nursing home settings. The five polarities of the Diamond model: holding on–letting go, doing–undergoing, remembering–forgetting, me–the other and believing–knowing were operationalised and evaluated on reported occurrence.
In conversations with patients, palliative care professionals reported letting go of loved ones (81.8%), dealing with pain and suffering (88.1%), dealing with issues from the past (67.2%), dealing with own versus loved one’s wishes (69.4%) and giving meaning to death (66.7%) as themes occurring regularly to very often. In conversations with loved ones, this was 70.8%, 78.5%, 55.4%, 68,8% and 62%, respectively. Respondents working in hospices reported these themes significantly more than those working in home care settings, nursing homes or hospitals. Nurse assistant respondents reported the themes significantly less than nurses or chaplains.
From the perspective of professionals providing palliative care in different palliative care settings, the Diamond model offers a validated framework for addressing relevant spiritual themes for patients and loved ones.
Only a few studies have investigated the quality of end-of-life care provided to nursing home residents with dementia as perceived by their relatives. We aim to investigate the quality of end-of-life care as perceived by relatives and to investigate which characteristics of nursing home residents with dementia, their relatives and the care they received are associated with the evaluation the quality of end-of-life care as perceived by the relatives.
Data used were from two cross-sectional studies performed in Flanders in 2010 and 2015. Questionnaires were sent to bereaved relatives of nursing home residents with dementia and 208 questionnaires were returned. The quality of end-of-life care as perceived by the relatives was measured with the End-of-Life with Dementia–Satisfaction With Care scale (scores ranging 10–40).
In total, 208 (response rate2010: 51.05%, response rate2015=60.65%) bereaved relatives responded to the questionnaire. The quality of end-of-life care as perceived by them was positively associated with the nursing home resident being male (b=1.78, p<0.05), relatives receiving information on palliative care (b=2.92, p<0.01) and relatives receiving information about medical care from care providers (b=2.22, p<0.01).
This study suggests that relatives need to be well informed about palliative and medical care. Future end-of-life care interventions in nursing homes should focus on how to increase the information exchange and communication between nursing home staff and relatives.
Cachexia and nutritional problems play a major role in palliative care. Artificial nutrition such as parenteral nutrition is common but its role and indications in terminal patients remain controversial due to lack of data. Therefore, recommendations are vague. Benefits and risks of parenteral nutrition in palliative care as well as the clinical implementation of the guidelines have not been adequately studied yet.
In this single-centre observational study, 72 palliative care patients were followed for 1 month. Patients with and without parenteral nutrition were analysed regarding venous access complications, oedema, weight and health-related quality of life.
93% of all patients showed reduced food intake. 34 (47%) patients received parenteral nutrition. Parenteral nutrition reduced energy deficit but was not associated with quality of life. Complications with the venous accesses for parenteral nutrition were frequent. A relevant proportion of patients with planned parenteral nutrition received no or only a few days of parenteral nutrition. Moreover, patients with parenteral nutrition showed more frequent and pronounced oedema.
The benefit–risk balance of palliative parenteral nutrition in end-of-life treatment seems to be questionable. In view of the identified risks, parenteral nutrition in end-of-life care should be initiated with caution.
To understand healthcare professionals’ experiences of delivering anticipatory prescribing (AP) during the first wave of the UK COVID-19 pandemic.
Semistructured qualitative interviews were conducted with a purposive sample of 16 healthcare professionals involved in community palliative care. Data were analysed inductively using thematic analysis.
Some of practitioners’ fears about the pandemic’s impact on delivering AP had not been realised during the first wave. Among patients with COVID-19 for whom community end-of-life care was deemed appropriate, deaths were perceived to be relatively easy to palliate with standard medications. These deaths were typically too rapid for AP to be appropriate or feasible. For non-COVID deaths, providing timely AP was more challenging: although community nurses and some palliative specialists continued to visit patients regularly, general practitioners did many fewer visits, moving abruptly to mainly remote consultations. This left some community nurses feeling undersupported, and prompted some palliative specialists to increase their direct involvement in AP. Several other changes were widely welcomed: collaboration to maintain drug supplies, adoption of online meetings and paperless practice, enhanced specialist helplines and a new policy allowing reuse of medication in care homes. The inclusion of more non-injectable options in AP protocols allowed clinicians to offer selected patients more choice, but few had yet done this in practice. No participants reported changing their prepandemic practice regarding administration of AP by lay caregivers.
Accomplishing AP during a pandemic was challenging, requiring healthcare professionals to make rapid changes to their systems and practices. Some changes may produce lasting improvements.
Paediatric palliative care provides supportive care to children with life-threatening or life-limiting illnesses throughout the disease trajectory. Up to 42% of children receiving palliative care in Canada will die within a freestanding paediatric hospice or designated end-of-life care bed. Few studies have assessed families’ experiences of this care within freestanding paediatric hospices.
To find and describe literature relating to family experiences in paediatric hospice palliative care throughout the end-of-life care journey including grief and bereavement.
Inclusion criteria: Children antepartum to 18 years or older if on paediatric palliative care service. Research conducted in freestanding paediatric hospices that focused on families’ experiences and perceptions of end-of-life and grief and bereavement care. Full-text articles available in English.
Exclusion criteria: Adult palliative and end-of-life care, respite care, palliative care provided in acute or community settings, professional perspectives, unexpected or sudden child death, pregnancy after loss.
Academic Search Complete, CINAHL, Cochrane Database of Systematic Reviews, Embase, PsycINFO, PubMed and Web of Science databases were searched from database inception until the present. Grey literature was also searched for relevant results.
The scoping review was guided by recommendations from Arksey and O’Malley and Levac et al.
A total of 4250 papers were retrieved, of which 10 met the scoping review criteria. The majority of studies were conducted in the UK. Three major themes emerged: more supportive care for families including grief and bereavement support, the hospice experience itself and future research areas.
There is little literature that focuses specifically on the needs of families within freestanding paediatric hospices. Further examination of the themes identified above provides an opportunity for future research.
Cancer treatment has become increasingly successful. However, prolonging and preserving life has become an important goal of therapy since many patients generally receive palliative chemotherapy. The perception of life changes when patients are informed, that no curative treatment is possible. This raises new dilemmas for patients with incurable cancer, but only sparse information is available about the thoughts of these patients.
The aim of this study was to explore how older patients experience the information on absence of curative treatment options.
Qualitative interviews were performed in eleven older patients with incurable upper gastrointestinal cancer receiving first-line palliative chemotherapy. Median age was 74 (65–76) years. We used a qualitative approach to collect data through semistructured individual interviews conducted at the hospital or by telephone interviews by an experienced researcher. The thematic analysis was conveyed by Braun and Clarke.
The interview findings were grouped around three main themes: hope of being cured, hearing but not comprehending, and desired milestones to reach. Further, it was determined that patients hid their feelings and avoided talking about the disease with the health professionals due to fear of being told the truth.
Receiving information about their incurable cancer was an ongoing dilemma for the patients. Following the message, patients shared thoughts about reaching important milestones in life, spending time with their family or hope for a cure to be found.
Patients undergoing allogeneic haematopoietic stem cell transplantation (allo-HSCT) have a higher risk of falls than those receiving other therapies for haematological disorders. This study aimed to investigate the impact of pretransplant lower extremity muscle strength (LEMS) on post-transplant falls.
In this retrospective cohort study, patients aged ≥18 years who underwent allo-HSCT were included. All data were extracted from medical records. LEMS was defined as the knee extension force measured by a handheld dynamometer divided by the patient’s weight. The receiver operating characteristic (ROC) curve was used to calculate the optimal LEMS cut-off value for prediction of falls. Patients were categorised into low and normal LEMS groups based on the cut-off value. The impact of pretransplant LEMS on post-transplant falls was analysed using a Cox proportional hazards model.
In total, 101 patients were analysed. During the observation period, falls occurred in 32 patients (31.7%). The ROC curve analysis results showed that the optimal LEMS cut-off value for prediction of falls was 45.4% per body weight. In multivariate analysis, pretransplant low LEMS was a significant predictor of falls in model 1 with patient characteristics as a confounding factor and model 2 with medications-inducing falls as a confounding factor, respectively (model 1: HR 3.23, 95% CI 1.37 to 7.64; model 2: HR 2.82, 95% CI 1.20 to 6.59).
Pretransplant LEMS was a significant predictor of post-transplant falls. The results of this study may help to prevent falls in patients undergoing allo-HSCT.
Studies of clinician–patient communication have used varied, ad hoc measures for communication efficacy. We developed and validated the Self-Efficacy for Medical Communication (SEMC) scale as a standard, quantitative measure of clinician-reported skills in communicating difficult news.
Using evidence-based scale development guidelines, we created two 16-item forms of the SEMC, one assessing communication with patients and one assessing communication with families. Clinicians providing oncological care in four organisations were invited to participate and provided consent. Participant demographics, responses to the SEMC items and responses to convergent and discriminant measures (those expected to relate strongly and weakly to the SEMC) were collected online. We performed analyses to determine the convergent and discriminant validity of the SEMC as well as its reliability and factor structure.
Overall, 221 oncology clinicians (including physicians, residents, fellows, medical students, nurses, nurse practitioners and physician assistants) participated. The patient and family forms both demonstrated high internal consistency reliability (alpha=0.94 and 0.96, respectively) and were strongly correlated with one another (r=0.95, p<0.001). Exploratory factor analysis demonstrated that the SEMC measures a unitary construct (eigenvalue=9.0), and its higher mean correlation with convergent (r=0.46) than discriminant (r=0.22) measures further supported its validity.
Our findings support the SEMC’s validity and reliability as a measure of clinician-rated communication skills regarding conducting difficult conversations with patients and families. It provides a useful standard tool for future research in oncology provider–patient serious illness communication.
WHO recommends early integration of palliative care alongside usual care to improve quality of life, although misunderstanding of palliative care may impede this. We compared the public’s perceived and actual knowledge of palliative care, and examined the relationship of this knowledge to attitudes concerning palliative care.
We analysed data from a survey of a representative sample of the Canadian public, accessed through a survey panel in May–June 2019. We compared high perceived knowledge (‘know what palliative care is and could explain it’) with actual knowledge of the WHO definition (knew ≥5/8 components, including that palliative care can be provided early in the illness and together with life-prolonging treatments), and examined their associations with attitudes to palliative care.
Of 1518 adult participants residing in Canada, 45% had high perceived knowledge, of whom 46% had high actual knowledge. Participants with high (vs low) perceived knowledge were more likely to associate palliative care with end-of-life care (adjusted OR 2.15 (95% CI 1.66 to 2.79), p<0.0001) and less likely to believe it offered hope (0.62 (95% CI 0.47 to 0.81), p=0.0004). Conversely, participants with high (vs low) actual knowledge were less likely to find palliative care fearful (0.67 (95% CI 0.52 to 0.86), p=0.002) or depressing (0.72 (95% CI 0.56 to 0.93), p=0.01) and more likely to believe it offered hope (1.88 (95% CI 1.46 to 2.43), p<0.0001).
Stigma regarding palliative care may be perpetuated by those who falsely believe they understand its meaning. Public health education is needed to increase knowledge about palliative care, promote its early integration and counter false assumptions.
In long-term neurological conditions, location of death is poorly understood but is seen as a marker of quality of dying.
To examine individual, illness and environmental factors on place of death among people with multiple sclerosis (MS) and Parkinson’s disease (PD) in isolation or in combination and compare them with people without either condition.
Retrospective, observational, comparative cohort study of 582 people with MS, 579 people with PD and 95 controls from UK Multiple Sclerosis and Parkinson’s Disease Tissue Bank. A subset of people with MS and PD were selected for analysis of individual clinical encounters 2 years before death and further subset of all groups for analysis of impact of advance care planning (ACP) and recognition of dying.
People with MS died more often (50.8%) in hospital than those with PD (35.3%). Examining individual clinical encounters over 2 years (4931 encounters) identified increased contact with services 12 months before death (F(1, 58)=69.71, p<0.0001) but was not associated with non-hospital deaths (F(1, 58)=1.001, p=0.321). The presence of ACPs and recognition of dying were high among people with MS and PD and both associated with a non-hospital death. ACPs were more likely to prevent hospital deaths when initiated by general practitioners (GPs) compared with other professional groups (2=68.77, p=0.0007).
For people with MS and PD, ACPs contribute to reducing dying in hospital. ACPs appear to be most effective when facilitated by GPs underlining the importance of primary care involvement in delivering holistic care at the end of life.
Numbers are rising of chronically and critically ill, technology-dependent children, who are admitted to paediatric intensive care units (PICUs). An integrated model of care (IMOC), that combines paediatric critical care and primary paediatric palliative care (PPC), in which either approach varies depending on the disease trajectory and is provided by the critical care team, might be a fundamental component of the best available standard of care for patients with life-threatening conditions. The objective of this study is to assess how PICUs around the world, implement an IMOC.
International multicentre cross-sectional observational study. Data was gathered from 34 PICUs from 18 countries in the Americas, Europe, Asia and Africa. Provision of primary PPC was studied for each child admitted at the PICU. We evaluated score differences in each domain of the Initiative for Paediatric Palliative Care (IPPC) curriculum with multilevel generalised linear models.
High-income country (HIC) units made up 32.4% of the sample, upper-middle income countries (UMICs) 44.1%, lower-middle income/lower income countries (LMIC/LICs) 23.5%. HICs had four statistically significantly higher IPPC scores compared with UMICs (domains: 1 holistic care; 2 family support, 3B family involvement; 6B grief/bereavement healthcare provider support) and two compared with LMIC/LICs (domains: 6A grief/bereavement family support; 6B grief/bereavement healthcare provider support).
HICs had a statistically significant overall higher IPPC score than UMICs. Adjusting for patient/centre characteristics, shorter shifts and multiple comorbidities were associated with higher IPPC scores.
All centres offered some PPC provision and partially applied an IMOC. These results are encouraging, however, differences related to income and patients/unit evidence opportunities for improvement.
Community-based and home-based palliative and end-of-life care (PEoLC) services, often underpinned by primary care provision, are becoming increasingly popular. One of the key challenges associated with them is their timely initiation. The latter requires an accurate enough prediction of how close to death a patient is.
Using ‘realist synthesis’ tools, this review sought to develop explanations of how primary care and community PEoLC programmes generate their outcomes, with the explanations presented as context–mechanism–outcome configurations. Medline, Embase, CINAHL, PsycINFO, Web of Science, ASSIA, Sociological Abstracts and SCIE Social Care Online were originally searched. A multistage process of focusing the review was employed, with timely identification of the EoL stage and timely initiation of associated services representing the final review focus. Synthesised sources included 21 full-text documents and 324 coded abstracts, with 253 ‘core contents’ abstracts generating >800 codes.
Numerous PEoLC policies and programmes are embedded in a framework of Preparation and Planning for Death and Dying, with identification of the dying stage setting in motion key systems and services. This is challenged by: (1) accumulated evidence demonstrating low accuracy of prognostic judgements; (2) many individuals’ orientation towards Living and Hope; (3) expanding grey zones between palliative and curative care; (4) the complexity of referral decisions; (5) the loss of pertinent information in hierarchical relationships and (6) the ambiguous value of having ‘more time’.
Prioritising temporal criteria in initiating PEoLC services is not sufficiently supported by current evidence and can have significant unintended consequences.
CRD42018097218.
Palliative care research suffers from underfunding and a workforce spread across multiple settings leading to a lack of large-scale studies. To facilitate multisite research and audit we set up the UK Palliative trainees Research Collaborative (UKPRC), the first national trainee-led audit and research collaborative in palliative care. Here, we critically review the progress and potential of the UKPRC since its inception in 2016, identifying key challenges and facilitators. Members of the UKPRC steering committee collaborated to write this reflection, reviewing existing evidence regarding trainee-led research collaboratives.
The UKPRC has representation from 16/19 UK training regions. Projects are run by a core team; local collaborators collect data at each site. The collaborative is supported by academic leads and newly qualified consultants to develop a culture of continuous improvement in practice. We have conducted four national projects to date, including an audit covering 119 sites. Facilitators for our work include a focus on inclusivity and national representation; support from recently qualified consultants to ensure continuity; and taking a pragmatic approach, focusing initially on straightforward projects to build momentum. Challenges include the step from national audit to multisite, patient-facing research and maintaining continuity in a membership with high turnover.
There is potential to change practice through large scale data collection via the trainee-led collaborative model. Collaboration is especially important in a small specialty with limited resources. The UKPRC has demonstrated ‘proof of concept’ and has the potential to support and sustain a culture where research can flourish within palliative care.
Neonatology has undergone important clinical and legal changes; however, the implications for end-of-life decision-making in seriously ill neonates to date are unknown. Our aim was to examine changes in prevalence and characteristics of end-of-life decisions (ELDs) in neonatology.
We performed a nationwide mortality follow-back survey in August 1999 to July 2000 and September 2016 to December 2017 in Flanders, Belgium. Data were linked to information from death certificates. For each death under the age of 1, physicians were asked to complete an anonymous questionnaire about which ELDs were made preceding death.
The response rate was 87% in 1999–2000 (253/292) and 83% in 2016–2017 (229/276). The proportion of deaths of infants born before 26 weeks’ gestation was increased (14% vs 34%, p=0.001). Prevalence of ELDs remained stable at 60%, with non-treatment decisions occurring in about 35% of all deaths. Use of medication with an explicit life-shortening intention was prevalent in 7%–10% of all deaths. In early neonatal death (<7 days old) medication with an explicit life-shortening intention decreased from 12% to 6%, in late neonatal death (7–27 days old), it increased from 0% to 26%, and in postneonatal death (>27 days old), it increased from 2% to 10%.
Over a timespan of 17 year, the prevalence of neonatal ELDs has remained stable. A substantial number of deaths was preceded by the intentionally hastening of death by administrating medication. While surveying solely the physician perspective in this paper, there is a need for an open multidisciplinary debate, including, for example, nursing staff and family members, based on clinical as well as ethical and jurisdictional reflections to discuss the need for international guidelines.
To examine whether having a better care experience with a clinical nurse specialist (CNS) is associated with better overall survival of patients with cancer in England.
We identified 99 371 patients with colorectal, lung, breast and prostate cancer who reported their care experience with CNS from the National Cancer Patient Experience Survey (2010–2014) and English cancer registration linked dataset. We categorised patients’ experiences into three groups (excellent, non-excellent and no CNS name was given), across three aspects of CNS care: the ease of contacting their CNS, feeling that a CNS had listened to them and the degree to which explanations given by a CNS were understandable. We used univariable and multivariable Cox proportional hazards regression analyses to estimate HRs with 95% CIs by patient experience for each cancer adjusting for patients’ sociodemographic and disease stage at diagnosis.
Among the three compared groups, patients who reported not being given a CNS name had the lowest survival. In the adjusted Cox regression analysis, the results show that among those who reported not being given a CNS name, the highest risk of death was in those with colorectal, breast and prostate cancers only (colorectal HR: 1.40; 95% CI: 1.32 to 1.84; breast HR: 1.34; 95% CI: 1.25 to 1.44; prostate HR: 1.09; 95% CI: 0.99 to 1.13). However, this association seemed reversed among patients with lung cancer, although attenuated when accounting for potential confounders.
These findings provide new evidence of the vital contribution CNS may make to cancer survival and suggest CNS input and support should be available to all patients after the diagnosis.
To explore the emotional experience of physicians in acute settings when encountering end-of-life conversations and decision making.
Thematic synthesis of qualitative studies. Medline, PsychInfo, PubMed, BNI and CIAHL were searched from 1985 to 2021 for studies published in English. Data extraction was informed by a framework created for assessing methodological quality by Polanin, Pigott, Espelage and Grotpeter (2019) and adapted by Draper et al. (2019).
Of 8429 papers identified, 17 were selected for review. Two themes containing 10 subthemes described the emotional and psychological factors impacting the experience of end-of-life care, namely: a tension between desire and ability to communicate end-of-life news, and a conflict of hiding versus revealing self across several practical and emotional contexts.
Medical training is only a small factor in how well a person copes with end-of-life care and may sometimes feed negative appraisals . Lack of support from senior colleagues, fear of criticism and a sense of perceived failure were linked to lower self-efficacy in end-of-life care. Beyond learning practical skills, physicians benefit from understanding the psychological factors impacting their experience and in building self-efficacy, and observing senior colleagues effectively process strong and difficult emotions.
Promoting personal reflection and sharing of the experiences encountered in end-of-life care, especially modelled from senior colleagues, may contribute to improvements in competence and reduce the impact of heroism, feelings of failure and avoidance in practice.
This meta-analysis aimed to determine the effectiveness of non-physician provider-led palliative care (PC) interventions in the management of adults with advanced illnesses on patient-reported outcomes and advance care planning (ACP).
We included randomised trials and cluster trials published in MEDLINE, EMBASE, CINAHL, PsycINFO, Cochrane Register of Controlled Trials and ClinicalTrials.gov searched until July 2021 that examined individuals ≥18 years with a diagnosis of advanced, life-limiting illness and received a PC intervention led by a non-physician (nurse, advance practitioner or social worker). Our primary outcome was quality of life (QOL), which was extracted as unadjusted or adjusted estimates and measures of variability. Secondary outcomes included anxiety, depression and ACP.
Among the 21 studies (2370 subjects), 13 included patients with cancer, 3 with heart failure, 4 with chronic respiratory disease and 1 with chronic kidney disease. The interventions were diverse and varied with respect to team composition and services offered. For QOL, the standardised mean differences suggested null effects of PC interventions compared with usual care at 1–2 months (0.04; 95% CI=–0.14 to 0.23, n=10 randomised controlled trials (RCTs)) and 6–7 months (0.10; 95% CI=–0.15 to 0.34, n=6 RCTs). The results for anxiety and depression were not significant also. For the ACP, there was a strong benefit for the PC intervention (absolute increase of 0.32% (95% CI=0.06 to 0.57).
In this meta-analysis, PC interventions delivered by non-physician were not associated with improvement in QOL, anxiety or depression but demonstrated an impact on the ACP discussion and documentation.
Palliative radiotherapy regimens for advanced head and neck cancers vary in doses and treatment times. Their quality of life (QoL) implications are not clearly established.
We randomised patients with advanced, non-metastatic, head and neck squamous cell carcinomas (stage IVA-B) with WHO performance score of 2 or higher to receive 30 Gy in 10 fractions over two weeks (arm A) or 20 Gy in 5 fractions over one week (arm B). QoL was assessed using European Organisation for Research and Treatment of Cancer (EORTC) Quality of Life Questionnaires (QLQ)-C30 and QLQ-H&N35 questionnaires at baseline and postradiotherapy. The primary endpoint was the EORTC-defined global health status. Secondary endpoints were functional and symptom scores of QoL, response to radiotherapy and acute toxicities. The primary aim was to evaluate the one-week regimen in terms of QoL to the longer regimen.
110 patients were randomised, the number of patients in the final analysis was 95: 49 in arm A and 46 in arm B. Baseline characteristics were similar. Clinical outcomes post-treatment were comparable. Postradiotherapy, there were improved scores for functional and symptom scales, the differences were non-significant. The duration of treatment was significantly reduced in arm B (p<0.01) with a lower score for financial difficulty (p<0.001). The difference in global health status (primary endpoint) was non-significant (p=0.82). The median overall survival was 7 months, the median progression-free survival was 5 months and these did not vary between the two groups.
One-week palliative radiotherapy for head and neck cancers achieves similar QoL and clinical outcomes as more protracted radiotherapy schedules with significantly reduced treatment time and financial toxicity.
To report data of the use of high-flow nasal therapy (HFNT) in the palliative care setting.
Five hypoxaemic patients were treated by HFNT in a 1-year period in a palliative care setting, either in the last days of life or as part of an intensive treatment for a reversible cause of hypoxic dyspnoea.
Four patients had a similar clinical pattern. After starting HFNT, dyspnoea intensity decreased and oxygen saturation improved, providing a clinical improvement for a duration of 2–3 days, but after 48–72 hours, their conditions deteriorated and patients underwent palliative sedation. Indeed, one patient with pulmonary embolism and pneumonia was treated by HFNT successfully and was discharged home 2 weeks after admission.
HFNT may be helpful for severely hypoxaemic patients who are unresponsive to common measures adopted in the last weeks/days of life of patients with advanced cancer or to treat reversible conditions. The findings of this case series showed the ethical and psychological aspects of end of life, particularly for caregivers. Future studies should assess an early use of this device in combination with lower doses of opioids or as an alternative to their use.
Previous data hypothesise that women receiving aromatase inhibitors (AIs) exhibit worse cognitive functioning than patients on tamoxifen (TAM) since their oestrogen levels are lower. We aimed to compare cognitive complaints in both groups.
From September 2020 to January 2021, we conducted a cross-sectional study on patients with stage I–III breast cancer undergoing adjuvant endocrine therapy for at least 6 months. Cognitive complaints were assessed using the Functional Assessment of Cancer Therapy–Cognitive V.3 questionnaire with higher scores indicating better outcomes.
We included 108 female patients, 60 on AI and 48 on TAM. Mean age at diagnosis was 52 (44 in the TAM group vs 58 in the AI group, p<0.001). Assessment of ‘perceived cognitive impairment-20 subscale’ did not identify a significant difference between the two groups (mean score: patients on AI=63/80 vs patients on TAM=58/80, p=0.198). Patients on TAM scored significantly worse than patients on AI (p<0.001) on the concentration complaints, while for the verbal domain, memory, multitasking, speed and functional interference, no significant difference between the two groups was observed. The difference in concentration complaints was maintained after adjustment to age, educational level, physical activity, prior exposure to chemotherapy, and living alone or with others. Finally, a favourable impact of regular physical activity on concentration scores was observed in both groups (p<0.001).
Despite age difference, patients on AI did not demonstrate worse complaints than patients on TAM. Patients on TAM exhibited significantly increased concentration complaints. Oncologists should carefully screen their patients for mental fog and educate them on the importance of regular exercise.
To assess the impact of a multidisciplinary complementary and integrative medicine (CIM) intervention on physical and emotional concerns among front-line COVID-19 healthcare providers (HCPs).
A multimodality CIM treatment intervention was provided by integrative practitioners to HCPs in three isolated COVID-19 departments. HCPs’ two main concerns were scored (from 0 to 6) before and following the CIM intervention using the Measure Yourself Concerns and Wellbeing questionnaire. Postintervention narratives identified reflective narratives specifying emotional and/or spiritual keywords.
Of 181 HCPs undergoing at least one CIM treatment, 119 (65.7%) completed post-treatment questionnaires. While HCPs listing baseline emotional-related concerns benefited from the CIM intervention, those who did not express emotional or spiritual concerns improved even more significantly following the first session, for both leading concerns (p=0.038) and emotional-related concerns (p=0.023). Nevertheless, it was shown that following subsequent treatments HCPs who expressed emotional and spiritual concerns improved more significantly than those who did not for emotional-related concerns (p=0.017).
A CIM intervention for front-line HCPs working in isolated COVID-19 departments can significantly impact emotional-related concerns, more so after the first treatment and among HCPs not using emotional-spiritual keywords in post-treatment narratives. Referral of HCPs to CIM programmes for improved well-being should avoid referral bias to those not expressing emotional/spiritual concerns.
To map the patient journey for individuals known to palliative care presenting to the emergency department (ED).
A linked dataset from the CUREd database and palliative care services in a region in the North of England was used. The study describes day and time of presentations, events occurring in the ED, mode of leaving the department and length of hospital admissions for presentations occurring within 90 days of a contact with palliative care. Findings were compared with the wider population in the CUREd database.
A significant proportion of individuals known to palliative care (29.4%) presented to the ED. Presentations typically occurred in working hours. Most presented by ambulance (84.4%) and were admitted to hospital (75.1%); these observations persisted across age groups. Most presentations involved investigations (88.5%) and/or treatment (84.1%).
Palliative patients exhibit significant use of the ED; some have the potential to benefit from attendances, but there is a minority for whom ED is unlikely to have improved their care. Advance care planning and communication between services are important for empowering those who stand to benefit from ED, while ensuring appropriate care is planned for those who prefer to avoid presenting.
To examine the demographic, clinical, and temporal factors associated with cancer decedents being a frequent or very frequent unscheduled care (GP-general practice Out-Of-Hours (GPOOH) and Accident & Emergency (A&E)) attender, in their last year of life.
Retrospective cohort study, of all 2443 cancer decedents in Tayside, Scotland, over 30- months period up to 06/2015, comparing frequent attenders (5–9 attendances/year) and very frequent attenders (≥10 attendances/year) to infrequent attenders (1–4 attendances/year) and non-attenders. Clinical and demographic datasets were linked to routinely-collected clinical data using the Community Health Index number. Anonymised linked data were analysed in SafeHaven, using binary/multinomial logistic regression, and Generalised Estimating Equations analysis.
Frequent attenders were more likely to be older, and have upper gastrointestinal (GI), haematological, breast and ovarian malignancies, and less likely to live in accessible areas or have a late cancer diagnosis. They were more likely to use GPOOH than A&E, less likely to have face-to-face unscheduled care attendances, and less likely to be admitted to hospital following unscheduled care attendance.
Age, cancer type, accessibility and timing of diagnosis relative to death were associated with increased likelihood of being a frequent or very frequent attender at unscheduled care.
COVID-19 presented a new risk to the care home sector. Primary care adapted their approach to the management of COVID-19 in care homes as the pandemic evolved. Our aim was to evaluate the clinical presentation, management, care planning and clinical decision-making, and after death care of care home residents who died due to COVID-19 in Aneurin Bevan University Health Board in Southeast Wales.
Clinical records of 136 in care homes were reviewed by a General Practitioner reviewer using a standardised template. These were then reviewed by a multidisciplinary panel to identify themes.
Most individuals presented with ‘typical’ COVID-19 symptoms (cough, fever); however, >50 presented with atypical symptoms. 90% had a record of Do Not Attempt Cardiopulmonary Resuscitation (DNACPR) decision, but only 46% had documented advance care planning (ACP), and only 37% had a clearly documented treatment escalation plan.
Care home residents are at risk of sudden clinical deterioration and death. This evaluation demonstrates that although DNACPR is in place for most individuals, holistic planning for end of life (including ACP and clinical care plans covering management of deterioration and escalation of care) is only present for a minority.
Palliative radiotherapy (PRT) is an effective way of reducing symptoms caused by advanced incurable cancer. Several studies have investigated factors that contribute to inequalities in access to PRT; distance to a radiotherapy centre has been identified as one potential barrier.
To assess whether there is an association between distance to a radiotherapy centre and utilisation rates of PRT in adults with cancer.
A systematic review and meta-analysis protocol was registered in the PROSPERO database (CRD42020190772). MEDLINE, EMBASE, CINAHL and APA-PsycINFO were searched for relevant papers up to 28 February 2021.
Twenty-one studies were included. Twelve studies focused on whether patients with incurable cancer received PRT, as part of their treatment package. Pooled results reported that living ≥50 km vs <50 km from the radiotherapy centre was associated with a reduced likelihood of receiving PRT (OR 0.84 (95%CI 0.80, 0.88)). Nine focused on distance from the radiotherapy centre and compared single-fraction (SF) versus multiple-fraction PRT, indicating that patients living further away were more likely to receive SF. Pooled results comparing ≥50 km versus <50 km showed increased odds of receiving SF for those living ≥50 km (OR 1.48 (95%CI 1.26,1.75)).
Patients living further away from radiotherapy centres were less likely to receive PRT and those who received PRT were more likely to receive SF PRT, providing some evidence of inequalities in access to PRT treatment based on proximity to centres providing radiotherapy. Further research is needed to understand whether these inequalities are influenced by clinical referral patterns or by patients unwilling or unable to travel longer distances.
CRD42020190772.
The aim of this paper is to illustrate how to manage a very difficult pain condition.
This is a clinical note of a complex approach using multiple analgesic regimens to effectively afford challenging pain situations.
A man underwent an opioid dose titration, followed by dose stabilisation for some months. Then he underwent two opioid substitutions, unsuccessfully. A spinal analgesia provided good analgesia for a prolonged period of time, necessitating variable interventions to counteract the evolving, challenging clinical situation.
The description of this case illustrates the need of a high level of experience and knowledge to elaborate complex strategies step by step every time the pain syndrome was worsening. Recommendations are unlikely in these extreme circumstances, and treatment should be based on continuous clinical counteraction to the evolving clinical conditions.
To examine the mediating effect of quality of life (QoL) on the relationship between perceived stress and immune function in Korean family caregivers of patients with cancer.
In this cross-sectional study, 89 family caregivers of patients with cancer completed perceived stress and QoL questionnaires. Immune function was assessed using two proinflammatory biomarkers, IL-6 and tumour necrosis factor-alpha (TNF-α). Multiple parallel mediator regression was conducted using four mediators (burden, lifestyle disruption, positive adaptation and financial concern) representing the subscales of QoL related to caregiving.
Psychological (indirect effect (ab)=–0.52, 95% CI –1.25 to –0.01) and physical (ab=–0.44, 95% CI –1.07 to –0.05) stress had a significant indirect effect on IL-6 levels attributed to lifestyle disruption associated with caregiving. Psychological (ab=–0.97, 95% CI –2.37 to –0.11) and physical (ab=–1.10, 95% CI –2.87 to –0.08) stress also had a significant indirect effect on TNF-α as a result of financial concerns owing to caregiving. Other indirect effects of psychological/physical stress on inflammation were not significant.
This study demonstrated that the effects of perceived psychological and physical stress on IL-6 and TNF-α levels were mediated by the caregiver’s QoL, especially lifestyle disruption and financial concerns. Stress management and improvement of caregivers’ QoL related to lifestyle disruption and financial issues should be considered to reduce the negative effects of caregiving on immune function.
In the context of palliative care, a new approach has been documented that allows for sensitive end-of-life conversations to be established through a game of cards.
This study aimed to identify the use of card games with patients in palliative care, assess self-reported satisfaction and synthesise findings on the effectiveness of its application.
We performed an integrative review study. The studies were collected from five databases, with no time limit until February 2021: Medical Literature Analysis and Retrieval System Online, Cumulative Index to Nursing and Allied Health Literature, Psychology and Behavioral Sciences Collection, SCOPUS and Scientific Electronic Library Online. The inclusion criteria were studies describing the use of card games in adult patients undergoing palliative care, in which the authors performed some type of evaluation. The methodological evaluation of the studies was carried out using the different standardised assessment tools from the Joanna Brigg’s Institute.
Of the 685 articles identified, 9 met the inclusion criteria. Regarding methodological aspects, 4 studies were quantitative, 4 mixed-method methodologies, and 1 was qualitative. Card games have been in use for the last decade. The use of card games not only allows for participation in the game without any inhibitions and with a high degree of satisfaction, but also allows for the discussion of sensitive topics related to the end of life, motivating participants to engage in advanced care planning behaviours.
Our findings suggest that using a card game to facilitate conversations with patients in palliative care is a useful and effective approach to discussing uncomfortable topics of death, dying and end-of-life care.
The Serious Illness Care Programme (SICP) is a multicomponent evidence-based intervention that improves communication about patients’ values and goals in serious illness. We aim to characterise implementation strategies for programme delivery and the contextual factors that influence implementation in three ‘real-world’ health system SICP initiatives.
We employed a qualitative thematic framework analysis of field notes collected during the first 1.5 years of implementation and a fidelity survey.
Analysis revealed empiric evidence about implementation and institutional context. All teams successfully implemented clinician training and an electronic health record (EHR) template for documentation of serious illness conversations. When training was used as the primary strategy to engage clinicians, however, clinician receptivity to the programme and adoption of conversations remained limited due to clinical culture-related barriers (eg, clinicians’ attitudes, motivations and practice environment). Visible leadership involvement, champion facilitation and automated EHR-based data feedback on documented conversations appeared to improve adoption. Implementing these strategies depended on contextual factors, including leadership support at the specialty level, champion resources and capacity, and EHR capabilities.
Health systems need multifaceted implementation strategies to move beyond the limited impact of clinician training in driving improvement in serious illness conversations. These include EHR-based data feedback, involvement of specialty leaders to message the programme and align incentives, and local champions to problem-solve frontline challenges longitudinally. Implementation of these strategies depended on a favourable institutional context. Greater attention to the influence of contextual factors and implementation strategies may enable sustained improvements in serious illness conversations at scale.
Question prompt lists (QPLs) support patients and family to ask questions they consider important during conversations with clinicians. We aimed to evaluate how a QPL developed for specialist palliative care is used during consultations and is perceived by patients and family, and how non-specialist clinicians would use the QPL. We further developed the QPL using these perspectives.
The QPL is part of a conversation guide on palliative care. Patients and family were asked to select topics and questions before consultation with a palliative care consultant. This qualitative study (2016–2018) included 18 interviews with patients and family who had used the QPL, 17 interviews with non-specialist clinicians and 32 audiotaped consultations with palliative care consultants. The data were analysed thematically and iteratively to adjust the QPL accordingly.
All participants considered the QPL elaborate, but recommended keeping all content. Patients and family found that it helps to structure thoughts, ask questions and regain a sense of control. They also felt the QPL could support them in gathering information. Although it could evoke strong emotions, their real challenge was being in the palliative phase. Clinicians considered the QPL especially helpful as an overview of possible discussion topics. During audiotaped consultations, topics other than those selected were also addressed.
By using the QPL, patients and family felt empowered to express their information needs. Its use may not be as unsettling as clinicians assume. Nevertheless, clinicians who hand out the QPL should introduce the QPL properly to optimise its use.
The heterogeneity of specialist palliative care services requires a classification to enable a clear description and comparison. In Germany, specialist palliative care is provided by palliative care units, palliative care advisory teams in hospitals and palliative home care teams. The differentiation between the three care settings can serve as a first level of classification. However, due to profound variations in regulatory structures and financing systems, services within each setting are heterogeneous and characteristics remain unclear, which impedes quality management. Further characteristics of specialist palliative care models need to be considered to allow for differentiation. Thus, services should be described on a polyhierarchical basis, such as a typology, representing relevant characteristics. We aimed at the development of a comprehensive classification to facilitate the description and differentiation of specialist palliative care models.
Qualitative study including the development of a literature based, preliminary list of structural and processual characteristics, expert interviews and focus groups. Eleven interviews from May to June 2020 and two focus groups, with seven and nine participants each, in January 2021.
Several structure and process characteristics were identified as suitable features for the specification of specialist palliative care in Germany. A classification in form of a typology including relevant characteristics has been developed.
The advanced typology refines the existing level of differentiation within specialist palliative care services in Germany and paves the way for an improved understanding of services. This deeper insight into structure and process characteristics of specialist palliative care is necessary internationally.
To assess the role of simulation to teach ‘palliative care’ skills to the multidisciplinary team (MDT) within general paediatric and neonatal settings.
Five simulation sessions were undertaken. The themes were acute presentation of a patient with a deteriorating life-limiting condition with no advance care plan (ACP) in place and parents not wishing for escalation of treatment; putting wishes expressed in an ACP in place for a dying child; managing an expected death; putting an antenatal ACP into place at delivery; and withdrawal of life-sustaining respiratory support in an extremely preterm neonate. Simulations were attended by the MDT. Participants completed feedback rating enjoyment, organisation, quality and relevance of sessions, and likelihood of attending further paediatric palliative medicine (PPM) simulation sessions, alongside a 10-point confidence scale rating confidence in dealing with ‘palliative care’ scenarios and talking to families about death.
Participants reported they enjoyed the sessions (mean score 4.5, range 1–5) and felt they were well organised (4.7/5, range 1–5) and of high quality (4.7/5, range 1–5). They felt sessions were relevant to their training (4.6/5, range 1–5) and that they would attend further simulation training in the area of PPM (mean 4.8/5, range 1–5). Confidence in managing PPM scenarios increased by a mean of 2.3 confidence points (range –1 to 5) and confidence in talking about death increased by a mean of 1.7 confidence points (range 0–5).
PPM simulation training was acceptable to participants and effective in increasing confidence with PPM skills. Training in PPM simulation should be a routine part of paediatric and neonatal training across the MDT.
In Wales, the term advance care planning now falls under the wider umbrella term ‘Future Care Planning’, which also includes patients with diminished mental capacity and their significant others, to engage in deciding and planning future care. Over the last 5 years, work has been undertaken to create education formats, resources and national documents, and this has been informed by a national Advance and Future Care Planning steering group and national conference, which included patient and carer representatives. This helped collate relevant data.
We outline key strategic approaches in Wales with regard to future care planning.
With data from our national conference and through feedback from stakeholders, a national repository of distinct resources, forms and education formats has been created. The approach seeks to cater for the disparate need of the Welsh population; there is not merely one format for multiple scenarios, but a choice of approaches, communication strategies and documents to suit bespoke needs.
Advance and future care planning is an approach with many different facets. In Wales, we have found that some patients prefer a clearly set out, legally binding ‘Advance Decision to Refuse Treatment’ to guide their care, while others prefer a softer, guiding approach captured through an Advance Statement. All these formats are available to patients, carers and healthcare professionals, together with explanatory guidance notes, through a central Welsh website. Next steps involve getting a central electronic repository for these forms, which is accessible to healthcare providers and to patients.
When a parent has terminal cancer, their children are part of that experience. Parents often want to protect their children from their disease and prognosis. Knowledge of dependent children’s experience will help ensure they receive appropriate support. To date, there is lack of synthesis of this evidence examining children’s perspectives.
To systematically search and synthesise the qualitative literature exploring the experiences of dependent children when their parent has terminal cancer.
Databases of MEDLINE, Embase, PsycINFO, CINAHL, Assia and the Cochrane library were searched systematically from inception to July 2020 to determine eligible studies. Included studies were appraised for quality and thematically synthesised using Thomas and Harden’s thematic synthesis framework.
Fourteen studies were included, which interviewed children about their experiences (n=654 children aged 4–18 years at the time of parental death), from six countries. Five descriptive themes were identified, further categorised into two broad themes: (1) finding out about parental cancer and its impact on the family and (2) coping with life with parental cancer, death and beyond.
Children want to be involved in their parent’s cancer experience and to help support the family. Healthcare professionals are ideally placed to support and encourage parents to include their children. They should reassure parents that children can cope well and that maintaining normality will help, and explain the benefits of honest and open communication and how they can include dependent children from diagnosis and beyond.
Uptake of advance care planning (ACP) in cancer remains low. An emphasis on personal value discussions and adoption of novel interventions may serve as the catalyst to increase engagement. This study examined the effectiveness of a video decision support tool (VDST) modelling values conversations in cancer ACP.
This single site, open-label, randomised controlled trial allocated patient–caregiver dyads on a 1:1 ratio to VDST or usual care (UC). Previously used written vignettes were converted to video vignettes using standard methodology. We evaluated ACP document completion rates, understanding and perspectives on ACP, congruence in communication and preparation for decision-making.
Participants numbered 113 (60.4% response rate). The VDST did not improve overall ACP document completion (37.7% VDST; 36.7% UC). However, the VDST improved ACP document completion in older patients (≥70) compared with younger counterparts (<70) (OR=0.308, 95% CI 0.096 to 0.982, p=0.047), elicited greater distress in patients (p=0.015) and improved patients and caregivers ratings for opportunities to discuss ACP with health professionals. ACP improved concordance in communication (VDST p=0.006; UC p=0.045), more so with the VDST (effect size: VDST 0.7; UC 0.54). Concordance in communication also improved in both arms with age.
The VDST failed to improve ACP document completion rates but highlighted that exploring core patient values may improve concordance in patient–caregiver communication. Striving towards a more rigorous design of the VDST intervention, incorporating clinical outcome scenarios with values conversations may be the catalyst needed to progress ACP towards a more fulfilling process for those who partake in it.
ACTRN12620001035910.
The modern hospice movement has historically opposed assisted dying. The 2016 legalisation of medical assistance in dying (MAID) in Canada has created a new reality for Canadian hospices. There have been few studies examining how the legalisation of MAID has affected Canadian hospices. Our objective was to identify the challenges and opportunities hospice workers think MAID brings to a hospice.
This qualitative descriptive study included four focus groups and four semistructured interviews with Canadian hospice workers at two hospices, one which allowed MAID on site, and one which did not. Thematic analysis was used to understand and report these challenges and opportunities.
We constructed five themes. These themes detailed participants’ beliefs in the abilities of hospice care, and how they felt MAID challenged these abilities. Further, participants felt that MAID itself created challenging situations for patients and families, and that local policies and practices led to additional institutional challenges. Some participants also felt that allowing MAID in hospice provided opportunities for more extensive end-of-life options.
The legalisation of MAID in Canada has created both challenges and opportunities for Canadian hospices. A balancing of these challenges and opportunities may provide a path for Canadian hospices to navigate their new reality. Increasing demand for MAID means that hospices are likely to continue to encounter requests for MAID, and should enact supports to ensure staff are able to manage these challenges and make best use of the opportunities.
Prior studies show that family caregiver factors influence patient outcomes. The purpose of this analysis was to determine the association between family caregiver self-rated health, perception of preparedness and burden at the time of patient admission to home palliative care (HomePal) with downstream patient hospital utilisation and time to hospice enrolment and death.
Data for this cohort study (n=441) were drawn from a trial testing two models of HomePal. Caregiver self-rated health, preparedness (Preparedness for Caregiving Scale, CPS) and burden (Zarit-12) were measured at admission to HomePal. Caregivers were categorised as having good/very good/excellent or fair/poor health, scoring above or below the CPS median score (23), or having no/mild (0–10), moderate (11-20) or high (>20) burden. Proportional hazard competing risk models assessed the association between caregiver factors with hospital utilisation (emergency department visits, observation and inpatient stays).
Patients whose caregivers reported poor health and low preparedness received more visits by home health aides and social workers, respectively (both, p<0.05). Adjusted models showed that worse caregiver health (HR: 0.69 (95% CI 0.52 to 0.92), p=0.01), low preparedness (HR: 0.73 (95% CI 0.57 to 0.94), p=0.01) and high burden (HR: 0.77 (95% CI 0.56 to 1.06), p=0.10) were associated with lower risk for hospital utilisation. There were no significant associations between caregiver factors with time to patient enrolment in hospice or death in adjusted models (both, p>0.05).
Prospective studies are needed to understand how greater in-home supports for family caregivers with poor health could help achieve quality palliative care that aligns with families’ priorities.
NCT03694431; ClinicalTrials.gov.
Febrile neutropenia (FN) commonly occurs during cancer chemotherapy. Prophylaxis with granulocyte colony-stimulating factors (G-CSFs) is known to reduce the severity and incidence of FN and infections in patients with cancer. Despite the proven efficacy, G-CSFs are not always prescribed as recommended. We performed a discrete-choice experiment (DCE) to determine what factors drive the physician preference for FN prophylaxis in patients with cancer undergoing chemotherapy.
Attributes for the DCE were selected based on literature search and on expert focus group discussions and comprised pain at the injection site, presence of bone pain, associated fever/influenza syndrome, efficacy of prophylaxis, biosimilar availability, number of injections per chemotherapy cycle and cost. Oncologists, in a national database, were solicited to participate in an online DCE. The study collected the responses to the choice scenarios, the oncologist characteristics and their usual prescriptions of G-CSFs in the context of breast, lungs and gastrointestinal cancers.
Overall, the responses from 205 physicians were analysed. The physicians were mainly male (61%), with ≤20 years of experience (76%) and working only in public hospitals (73%). The physicians prescribe G-CSF primary prophylaxis for 32% of patients: filgrastim in 46% and pegfilgrastim in 54%. The choice of G-CSF for primary and secondary prophylaxis was driven by cost and number of injections. Biosimilars were well accepted.
Cost and convenience of G-CSF drive the physician decision to prescribe or not G-CSF for primary and secondary FN prophylaxes. It is important that these results be incorporated in the optimisation of G-CSF prescription in the clinical setting.
To perform a bibliometric analysis of studies that evaluated the barriers to access to cancer palliative care (PC).
This was a bibliometric review using MEDLINE; EMBASE; Web Of Science; LILACS and the Cochrane Library. A search was conducted with the terms Barriers, Palliative Care and Cancer. Articles whose objectives targeted barriers to access to PC were considered, regardless of the year of publication. The setting is articles published from 1987 to 2020.
A total of 6158 articles were identified, of which 217 were eligible for analysis. The USA and UK being the countries with the largest number of articles on the subject (n=101, n=18, respectively). After expert analysis, the barriers were grouped into nine categories.
Barriers related to symptom control were identified in 19% of the eligible articles, along with barriers related to health, which with 24% of occurrence in the articles, were the most frequently cited barriers. Countries which have implemented PC for some time were those with the greatest number of publications and in journals with the highest impact factors. Cross-sectional study design continues to be the most frequently used in publications.
Losing a child is burdensome with potential long-term impact on the parents’ well-being and quality of life. The aim was to investigate parental well-being and quality of life 3–5 years after losing a child due to life-limiting diagnoses and to identify associated factors in order to target future interventions.
All parents, who lost a child (<18 years) due to life-limiting diagnoses in the period 2012–2014 in Denmark, were invited to complete a self-administered questionnaire. A seven-point Visual Digital Scale (VDS) was used to assess issues of well-being and quality of life including physical health, anxiety, depression and sleep quality which were combined into a cumulative symptom index. Associations were assessed by means of ordinal logistic regression models.
In all, 152 (38%) children were represented by 136 mothers and 57 fathers. Totally, 17.6% of the mothers and 14.0% of the fathers had ≥2 symptoms (assessed by the symptom index). Parents with lower education had 2.11 (95% CI: 1.01 to 4.40) times higher odds of having more symptoms than parents with higher education. Unmarried parents had 2.14 (95% CI: 1.03 to 4.42) times higher odds of having more symptoms than married parents. Ten per cent of the parents reported poor overall quality of life.
According to the VDS, 1 out of 10 parents experienced poor overall quality of life 3–5 years after the loss. Every sixth had two or more symptoms assessed by the symptom index. Associated factors for poor quality of life suggest attention to particularly unmarried parents and parents with lower education.
Men living with prostate cancer have supportive and palliative needs. However, few studies detail unmet needs (vs quality of life measurement) or include data from those with advanced disease. We aimed to identify unmet needs of people living with prostate cancer (men, family carers), including those with advanced disease.
Mixed-methods national survey (patient Supportive Care Needs Survey; Carer Support Needs Assessment Tool) and health status (EuroQol Visual Analogue Scale). Quantitative data were explored using regression analysis. Free text data were subjected to thematic analysis.
216 men (mean age 65±8.5 years; active cancer 136 [63%]) and 97 carers (68 (70%) spouse/partner) provided data. 133 men (62%) reported moderate-to-high need which was more likely in advanced disease. Men’s health status was worse with active vs remitted disease (mean difference –11; 95% CI –17 to –5; p<0.001). 85 (88%) carers reported at least one unmet need relating to ‘enabling them to care’ and 83 (86%) relating to ‘their own well-being’. Carers with chronic illnesses had more unmet needs (p=0.01 to p=0.04) and patient receipt of palliative care independently predicted higher unmet carer needs (p=0.02).
Free text data demonstrated widespread burden with: (1) poor communication/information, including about palliative care; (2) poorly managed symptoms/concerns and (3) poor care co-ordination. Incontinence, sexual dysfunction and hormone side-effects were serious problems, often left unaddressed.
Many living with prostate cancer continue with wide-ranging concerns. Lack of systematic, ongoing needs assessment and poor communication compound inadequate clinical pathways. Person-centred care, interdisciplinary working and integrated palliative care should be resourced.
Given limited palliative care resources, volunteers can be viewed as essential. To better understand the contribution of volunteers, it is useful to look at their roles in care systems with high level of financed public welfare, such as those found in Nordic countries.
To develop research-based knowledge of experiences related to volunteer roles in palliative care in Nordic countries with similar welfare systems.
Systematic review and thematic synthesis of qualitative studies.
Cinahl, APA PsycInfo, SocINDEX, Idunn, Cristin, SwePub, SweMed+, Doria and Danish Research Database from 2005 to 2020.
Qualitative peer-reviewed studies reporting first-hand experience of volunteers in palliative care in hospital, community (homecare and nursing home) and hospice settings (hospice institution and hospice home care); English abstract and available full text.
Of 1521 citations, 11 articles were included in the review: seven Norwegian articles, three Swedish articles and one Danish article. Three overall themes emerged from analysis: (1) volunteers offered something different than professionals, (2) volunteering took place in professionals’ domain, (3) volunteers were motivated by personal gains.
Volunteers provide valuable support to patients and next of kin that differs from professionals’ support. Volunteers are motivated by direct interaction with patients and next of kin. Opportunities for interactions depend on the healthcare setting and professionals’ understandings of volunteers’ role. Formal training of volunteers is limited and supportive available professionals important to volunteers. Professionals’ understandings of volunteers’ role should be improved to strengthen volunteers’ role in palliative care in Nordic countries.
CRD42020222695.
Muscle strength decline is reported to predict mortality in many cancers. However, there is little knowledge of the relation between muscle strength decline and clinical outcomes of allogeneic haematopoietic stem cell transplantation (allo-HSCT). This study aimed to determine the impact of pre-transplant lower extremity muscle strength (LEMS) on post-transplant overall survival (OS) and non-relapse mortality (NRM).
In this retrospective cohort study, 97 adult patients underwent allo-HSCT during 2012–2020. LEMS was defined as knee extension force divided by patient’s body weight. The patients were divided into low and high LEMS groups based on pre-transplant LEMS. OS was measured using the Kaplan-Meier method and the Cox proportional hazards model. The cumulative incidence of NRM was evaluated using the Fine and Gray method, with relapse considered as a competing risk event.
Probability of OS was significantly lower in the low LEMS groups (HR 2.48, 95% CI 1.20 to 5.12, p=0.014) than in the high LEMS group on multivariate analysis. Five-year OS was 25.8% and 66.4% in the low and high LEMS groups, respectively. Risk of NRM was significantly higher in the low LEMS group (HR 4.49, 95% CI 1.28 to 15.68, p=0.019) than in the high LEMS group. The cumulative incidence of NRM was 41.4% and 11.1% in the low and high LEMS groups, respectively.
Pre-transplant LEMS was a significant factor in predicting OS and NRM.
A common difficulty at the end of life (EOL) is to determine an appropriate service model, such as hospice share care (HSC), hospice inpatient care (HIC) and hospice home care (HHC). This study aimed to recommend the appropriate hospice delivery model based on the physical, psychosocial and spiritual needs of patients referred for hospice care.
This cohort study included patients who received only one kind of hospice delivery model between 2006 and 2020. Data were analysed with descriptive statistics, Fisher’s exact test, non-parametric analysis of variance, Kaplan-Meier curves and Cox proportional hazards model that determined the patients’ clinical characteristics for a hospice delivery model and overall survival.
A total of 8874 hospice patients were recruited, of which 7076 (79.7%) were HSC patients, 918 (10.4%) were HIC patients and 880 (9.9%) were HHC patients. There were significant differences in the physical symptoms and demographic, psychosocial and spiritual factors among the three groups (p<0.001). The patients who received the HHC were less to have dyspnoea (18.5%) and dysphagia (28.7%). The HIC patients showed higher severity of symptoms and experienced greater psychosocial distress (73.2%). The HSC is appropriate for noncancer patients . Patients with cancer were associated with less dyspnoea (32.4%) and dysphagia (46.5%). Patients with lung cancer who received the HHC had better survival than those who received other types of hospice care (HR=0.75, 95% CI: 0.66 to 0.86, p<0.001).
This study provides guidance regarding the appropriate hospice service model, based on individualised palliative needs, targeting improvement in EOL care.
The current UK healthcare workforce crisis is particularly severe in community services. A key limitation with traditional service-delivery models is the reliance on practitioners with levels of training and experience to enable them to operate independently. This paper describes a real-world evaluation of the implementation of digital health technology designed to provide remote, real-time support and task delegation in community palliative care services. It explores the ability of technology to support sustainable community workforce models and reports on key indicators of quality and efficiency.
The study was a mixed-methods, theory-driven evaluation, incorporating interviews, observations and analysis of routine data. The focus of this paper is the reporting of findings from pre–post implementation comparison and interrupted time series analysis. Data include community hospice service visits, hospital use by hospice patients and patient reported experiences.
The digital health intervention allowed the service to include a more junior workforce (p<0.001, Cramer’s V=0.241), requiring fewer joint visits (p<0.001, Cramer’s V=0.087). No negative changes in hospitalisation were observed and patient reported experiences improved (p=0.023). Changes in hospital non-emergency bed days were inconclusive. However, emergency department admissions reduced significantly (–76.9 /month at 17 months, p=0.001). The cost per hour for visits reduced from £16.71 to £16.23 and annual savings of £135 153 are estimated for reduced emergency admissions.
The evaluation demonstrates the value of digital innovation to support programmes of service redesign and begin to address the healthcare workforce crisis, while having a positive economic effect and indicating an improvement to patient experiences.
To evaluate the accuracy and impact of clinicians’ estimates of prognosis (CEP) in patients referred for hospice inpatient care.
Retrospective review of 12 months’ referrals to a London hospice unit. Data extracted included date of referral, admission and death and CEP.
N=383. Mean age 72 years (range 24–101). CEP accuracy: Median survival where CEP was ‘days’ (n=141) was 7 days (0–164); CEP ‘weeks’ (n=167) was 14 days (1–538); CEP ‘months’ (n=75) was 32 days (2–507). Kaplan-Meier survival curves showed significant difference between CEP of ‘months’ and ‘weeks’ (p<0.0001); ‘months’ and ‘days’ (p<0.0001); but not ‘days’ and ‘weeks’ (p=0.1). CEP impact: admission waiting time increased with increasing CEP: CEP ‘days’ (n=105) median 1 day (0–14); CEP ‘weeks’ (n=154) median 2 days (0–46); CEP ‘months’ (n=69) median 3 days (0–46). No significant difference was demonstrated in the number of discharge planning conversations between groups (0.9/patient).
CEP was accurate in over half of the cases but did not adequately discriminate between those with prognoses of days or weeks. CEP may affect the prioritisation given to patients by hospices. Inaccurate CEP on referral forms may influence other aspects of care; however, further research is needed.
Patients with chronic respiratory disease have significant palliative care needs, but low utilisation of specialist palliative care (SPC) services. Decreased access to SPC results in unmet palliative care needs among this patient population. We sought to determine the referral practices to SPC among respirologists in Canada.
Respirologists across Canada were invited to participate in a survey about their referral practices to SPC. Associations between referral practices and demographic, professional and attitudinal factors were analysed using regression analyses.
The response rate was 64.7% (438/677). Fifty-nine per cent of respondents believed that their patients have negative perceptions of palliative care and 39% were more likely to refer to SPC earlier if it was renamed supportive care. While only 2.7% never referred to SPC, referral was late in 52.6% of referring physicians. Lower frequency of referral was associated with equating palliative care to end-of-life care (p<0.001), male sex of respirologist (p=0.019), not knowing referral criteria of SPC services (p=0.015) and agreement that SPC services prioritise patients with cancer (p=0.025); higher referral frequency was associated with satisfaction with SPC services (p=0.001). Late referral was associated with equating palliative care to end-of-life care (p<0.001) and agreement that SPC services prioritise patients with cancer (p=0.013).
Possible barriers to respirologists’ timely SPC referral include misperceptions about palliative care, lack of awareness of referral criteria and the belief that SPC services prioritise patients with cancer. Future studies should confirm these barriers and evaluate the effectiveness of strategies to overcome them.
To develop and validate the WHALES screening tool predicting short-term mortality (3 months) in older patients hospitalised in an acute geriatric unit.
Older patients transferred to an acute geriatric ward from June 2017 to December 2018 were included. The cohort was divided into two groups: derivation (n=664) and validation (n=332) cohorts. Cause for admission in emergency room, hospitalisation history within the previous year, ongoing medical conditions, cognitive impairment, frailty status, living conditions, presence of proteinuria on a urine strip or urine albumin-to-creatinine ratio and abnormalities on an ECG were collected at baseline. Multiple logistic regressions were performed to identify independent variables associated with mortality at 3 months in the derivation cohort. The prediction score was then validated in the validation cohort.
Five independent variables available from medical history and clinical data were strongly predictive of short-term mortality in older adults including age, sex, living in a nursing home, unintentional weight loss and self-reported exhaustion. The screening tool was discriminative (C-statistic=0.74 (95% CI: 0.67 to 0.82)) and had a good fit (Hosmer-Lemeshow goodness-of-fit test (X2 (3)=0.55, p=0.908)). The area under the curve value for the final model was 0.74 (95% CI: 0.67 to 0.82).
The WHALES screening tool is a short and rapid tool predicting 3-month mortality among hospitalised older patients. Early identification of end of life may help appropriate timing and implementation of palliative care.
We aimed to examine the influence of chronic diseases in emergency department (ED) and inpatient utilisation and expenditures in the 12 months before death.
Retrospective cohort study of ED and inpatient database. Adults deceased at a hospital in Portugal in 2013 were included. We tested the influence of chronic diseases on the number of ED visits, hospital admissions and expenditures using generalised linear models.
The study included 484 patients (81.8% ≥65 years, median two chronic diseases). Nearly all (91.3%) attended the ED in the 12 months before death. The median number of admissions was 1, median expenditure was 6159. Adjusting for confounders, chronic pulmonary disease increased ED and inpatient utilisation (1.49; 95% CI: 1.22 to 1.83; 95% CI 1.29, 1.09 to 1.51). Increased ED utilisation was observed for patients with renal disease, dementia and metastatic solid tumour (1.40, 95% CI 1.15 to 1.71; 1.39, 95% CI 1.11 to 1.75; 1.31, 95% CI 1.07 to 1.60). Other malignancies showed increased inpatient utilisation (1.24, 95% CI 1.09 to 1.42). The number of chronic conditions had a considerable effect on expenditures (3: 2.08, 95% CI 1.44 to 2.99; ≥4: 4.02, 95% CI 2.51 to 6.45).
We found a high use of hospitals at the end of life, particularly EDs. Our findings suggest that people with cancer, renal disease, chronic pulmonary disease and dementia are relevant when developing cost-effective alternatives to hospital care.
Advance care planning (ACP) and goals of care designation (GCD) performance indicators were developed and implemented across Alberta, Canada, and have been used to populate an electronic ACP/GCD dashboard. The study objective was to investigate whether users found the indicators and dashboard usable and acceptable.
This study employed a survey among a convenience sample of ACP/GCD community of practice members. The survey included questions on demographics, clinical practices and a validated usability questionnaire for the dashboard, System Usability Scale (SUS).
Eighteen of 33 community of practice members (54.5%) answered the survey. Half of participants had a leadership or management role for ≥10 years. Most respondents (55.6%) had access to the ACP/GCD dashboard, and various ACP/GCD audit resources were used. Mean SUS was 70.83 (SD 19.72), which was above the threshold for acceptability (68). Approximately three-quarters of respondents (72.7%) found the indicators informative and meaningful for their practice, and over half (54.5%) were willing to use the dashboard and/or indicators to change their ACP/GCD practice.
The nine indicators and dashboard were acceptable and usable for monitoring ACP/GCD performance. This set of indicators shows promise for describing and evaluating ACP/GCD uptake throughout a complex, multisector healthcare system.
Low health literacy among older adults is associated with limited engagement in end-of-life care planning, higher hospitalisation rates and increased mortality. Frequently, older dialysis patients derive no survival benefit from dialysis and their quality of life often deteriorates further on dialysis. Older dialysis patients’ values and wishes are frequently unknown during key healthcare decision making and many endure medically intensive end-of-life scenarios. The objectives of this study were to explore older dialysis patients’ understanding of haemodialysis, to explore their engagement in end-of-life care planning and to explore their satisfaction with life on haemodialysis.
15 older dialysis patients participated in qualitative semistructured interviews in two haemodialysis units in Ireland. Thematic saturation was reached. Thematic analysis, applied inductively, was used to distill the data.
Themes identified included disempowerment among participants reflected limited health literacy, poor advance care planning compromised participant well-being, haemodialysis compromised participants’ core values.
Health literacy levels among older dialysis patients are poor, patient empowerment is limited and their participation in shared decision making and advance care planning is suboptimal. Consequently, healthcare decision making, including haemodialysis, may jeopardise patients’ core values. Improving health literacy through enhanced patient education and improved communication skills training for clinicians is necessary to promote patient participation in shared decision making. Clinician training to facilitate discussion of patients’ values and wishes will help guide clinicians and patients towards healthcare decisions most concordant with patients’ core values. This approach will optimise the circumstances for patient-centred care.
Early palliative supportive care has been associated with many advantages in patients with advanced cancer. However, this model is underutilised in patients with haematological malignancies. We investigated the presence and described the frequency of quality indicators for palliative care and end-of-life care in a cohort of patients with acute myeloid leukaemia receiving early palliative supportive care.
This is an observational, retrospective study based on 215 patients consecutively enrolled at a haematology early palliative supportive care clinic in Modena, Italy. Comprehensive hospital chart reviews were performed to abstract the presence of well-established quality indicators for palliative care and for aggressiveness of care near the end of life.
131 patients received a full early palliative supportive care intervention. All patients had at least one and 67 (51%) patients had four or more quality indicators for palliative care. Only 2.7% of them received chemotherapy in the last 14 days of life. None underwent intubation or cardiopulmonary resuscitation and was admitted to intensive care unit during the last month of life. Only 4% had either multiple hospitalisations or two or more emergency department access. Approximately half of them died at home or in a hospice. More than 40% did not receive transfusions within 7 days of death. The remaining 84 patients, considered late referrals to palliative care, demonstrated sensibly lower frequencies of the same indicators.
Patients with acute myeloid leukaemia receiving early palliative supportive care demonstrated high frequency of quality indicators for palliative care and low rates of treatment aggressiveness at the end of life.
We aimed (1) to assess the nutritional status (NS) using different methods, according to the primary tumour site and (2) to evaluate the performance of these methods in patients with incurable cancer from a reference centre in Brazil.
Cross-sectional analysis of data from patients admitted to the palliative care unit of a reference cancer centre in Brazil, between July 2016 and March 2020. The primary tumour site was the independent variable and the NS using different methods were the dependent variables. Logistic regressions were performed.
A total of 2,144 patients were included in the study. The most common primary tumour site was the upper gastrointestinal (GI) tract (18.0%), followed by gynaecological (17.6%) and head and neck (HN) (13.5%). Our results showed that patients with tumours of the upper GI tract followed by HN presented significantly higher risk of worse NS. In contrast, breast tumours, bone and connective tissues and melanoma presented inverse association. The gynaecological cancer was variably associated with nutritional impairment, according to the assessment method.
Patients with incurable cancer present high prevalence of NS impairment, depending on the tumour site, shown to be elevated in patients with tumour in the upper GI tract.
Patients who do not attend outpatient palliative care clinic appointments (‘no-shows’) may have unmet needs and can impact wait times. We aimed to describe the characteristics and outcomes associated with no-shows.
We retrospectively reviewed new no-show referrals to the Princess Margaret Cancer Centre Oncology Palliative Care Clinic (OPCC) in Toronto, Canada, between January 2017 and December 2018, compared with a random selection of patients who attended their first appointment, in a 1:2 ratio. We collected patient information, symptoms, performance status (Eastern Cooperative Oncology Group (ECOG) and outcomes. Univariable and multivariable logistic regression analyses were used to identify significant factors.
Compared with those who attended (n=214), no-shows (n=103), on multivariable analysis, were at higher odds than those who attended of being younger (OR 0.98, 95% CI 0.96 to 1.00, p=0.019), living outside Toronto (OR 2.67, 95% CI 1.54 to 4.62, p<0.001) and having ECOG ≥2 (OR 2.98, 95% CI 1.41 to 6.29, p=0.004). No-shows had a shorter median survival compared with those who attended their first appointment (2.3 vs 8.7 months, p<0.001).
Compared with patients who attended, no-shows lived further from the OPCC, were younger, and had a poorer ECOG. Strategies such as virtual visits should be explored to reduce no-shows and enable attendance at OPCCs.
This study evaluated the analgesic efficacy and safety of CT-guided iodine-125 (125I) brachytherapy in patients with spinal metastasis-induced pain who were not suitable to receive radiotherapy.
A cohort of 68 patients with spinal metastasis induced pain not fully relieved by opioids and did not receive external beam radiation therapy due to poor general status were enrolled and underwent CT-guided 125I brachytherapy for analgesic treatment.
Patients were followed for 8 weeks after brachytherapy. Mean Numerical Rating Scale score before brachytherapy was 7.3±1.3 and decreased to 3.3±0.9, 2.6±0.8, 2.7±0.8, 2.9±0.9 and 3.3±1.1 at weeks 1, 2, 4, 6 and 8, respectively, after brachytherapy. Daily dose of morphine equivalent was 105.1±28.0 mg before brachytherapy and decreased to 45.3±13.7, 39.9±14.2, 40.4±14.9, 48.5±18.0 and 62.4±17.5 mg at weeks 1, 2, 4, 6 and 8, respectively, after brachytherapy. Patients had fewer daily episodes of breakthrough pain after brachytherapy (p<0.001). Patients had improvement in pain-related functional interference and in hospital anxiety and depression score after brachytherapy.
CT-guided 125I brachytherapy is an effective and safe intervention for patients with spinal metastasis-induced pain who are not able to receive radiation therapy.
We compared the new outpatient clinic referrals during the first 10 months of the COVID-19 pandemic with the year before.
We compared baseline characteristics of the 2208 new referrals in 2020 (n=922) and 2019 (n=1286) with X2 and Mann-Whitney U tests and calculated ORs with binary logistic regression. To evaluate the expected changes in the cancer survival secondary to stage migration, we used the 5-year survival data of Survival, Epidemiology and End Results (SEER) Program 2010–2016.
The percentage of patients with inoperable or metastatic disease was significantly increased during the pandemic (49.8% vs 39%, OR: 1.553, 95% CI: 1.309 to 1.843, p<0.001). We observed a significant decrease in the percentage of patients diagnosed via the screening methods (18.8% vs 28.7%, OR: 1.698, 95% CI: 1.240 to 2.325, p=0.001). The 90-day mortality after the cancer diagnosis was significantly higher during the pandemic (10.5% vs 6.6%, OR: 1.661, 95% CI: 1.225 to 2.252, p=0.001). Due to the increased advanced-stage disease rate at first referral, significant decreases in 5-year survival rates were expected for breast cancer (–8.9%), colorectal cancer (–11.1%), cervix cancer (–10.3%) and melanoma (–7%).
We think that collaborative efforts are paramount to prevent the pandemic of late cancer diagnoses and ensure patient safety during the pandemic.
Although patients living with end-stage organ disease (ESOD) suffer unmet needs from the physical and emotional burdens of living with chronic illness, they are less likely to receive palliative care.
The aims of the study were to determine if palliative care referrals reduced healthcare utilisation and if impact on healthcare utilisation was dependent on the timing of the referral.
Patients with ESOD who received palliative care support were matched with those who did not using coarsened exact matching and propensity score matching, and compared in this retrospective cohort study. Primary outcomes of interests were reduction in all-cause emergency department (ED) visits and costs, reduction in all-cause tertiary hospital admissions, length of hospital stay and inpatient hospital costs.
Patients with ESOD referred to palliative care experienced a reduction in the frequency of all cause ED visits and inpatient hospital admissions. Significant impact of a palliative care referral was at 3 months, rather than 1 month prior to death with a greater reduction in the frequency of ED visits, inpatient hospital admissions, length of stay and charges (p all <0.05). The most common ESOD referred to palliative care for 1110 matched patients was end-stage renal failure (57.7%), and least commonly for respiratory failure (7.6%).
Palliative care can reduce healthcare utilisation, with reduction greatest when the referral is timed earlier in the disease trajectory. Cost savings can be judiciously redirected to the development of palliative care resources for integrated support of patients and caregivers.
The wish to die (WTD) is a complex experience sometimes accompanied by intention to hasten death. The aim of this study is to identify the predictive factors for WTD and hastening death intention (HDI) in Spanish patients with advanced illness.
This is a subanalysis of a larger cross-sectional study conducted on patients experiencing advanced illness (N=201). Sociodemographic data and data related to symptom burden (Edmonton Symptom Assessment System-Revised), depressive and anxious symptoms (Hospital Anxiety and Depression Scale), demoralisation (Spanish version of the Demoralisation Scale), perceived loss of dignity (Patient Dignity Inventory) and WTD (Assessing Frequency and Extent of Desire to Die) were collected. The analysis used univariate and multivariate logistic regression.
The prevalence of WTD in the sample was 18%, with 8 out of 36 patients reporting HDI. The independent factors predictive of WTD were (1) knowledge of approximate prognosis (OR=4.78; 95% CI 1.20 to 10.8; p=0.001); (2) symptom burden (OR=1.05; 95% CI 1.00 to 1.09; p=0.038); and (3) the Demoralisation Scale subsection ‘lack of meaning and purpose in life’ (OR=1.61; 95% CI 1.30 to 1.99; p=0.000). An independent predictive factor for HDI was the Demoralisation Scale subsection ‘patients’ distress and coping abilities’ (OR=1.47; 95% CI 1.04 to 2.08; p=0.028), while having religious beliefs was a protective factor (OR=0.13; 95% CI0.17 to 0.97; p=0.047).
Demoralisation was found to be the only common triggering factor for WTD and HDI, although experiences share certain features. Identification of the predictive factors for WTD and HDI may contribute to their prevention and management.
Low health literacy among older adults is associated with limited engagement in end-of-life care plans, more hospitalisations and excess mortality. Frequently, older patients derive no survival benefit from dialysis and quality of life often deteriorates with dialysis. Older dialysis patients’ values and wishes are often unknown during key healthcare decision-making and many endure medically intensive end-of-life interventions . The objectives of this study were to examine older dialysis patients’ understanding of haemodialysis, their engagement in end-of-life care planning and their satisfaction with life on haemodialysis.
15 older dialysis patients participated in qualitative semi-structured interviews in two haemodialysis units . Thematic saturation was reached. Thematic analysis, applied inductively, distilled the data.
Themes identified included disempowerment which reflected limited health literacy, poor advance care planning compromised well-being and haemodialysis compromised their core values.
Health literacy among older dialysis patients appeared poor, patient empowerment was limited and participation in shared decision-making and advance care planning suboptimal. Consequently, complex healthcare decision-making, including haemodialysis may jeopardise patients’ core values. These findings have significant implications for the validity of the informed consent process prior to dialysis initiation. Improved health literacy through enhanced patient education and better communication skills for clinicians are necessary to promote patient participation in shared decision-making. Clinician training to facilitate discussion of patients’ values and wishes will help guide clinicians and patients towards healthcare decisions most concordant with individual core values. This will optimise patient-centred care.
The importance of palliative care in those with advanced fibrotic interstitial lung diseases (F-ILD) is recognised, but the palliative care requirements of patients and caregivers affected by F-ILD regardless of disease course are not established. We set out to explore this and identify optimal solutions in meeting the needs of a F-ILD population in Ireland.
Implementing a World-Café qualitative research approach, we captured insights evolving, iteratively in interactive small group discussions in response to six predefined topics on palliative care and planning for the future. Thirty-nine stakeholders participated in the World-Café including 12 patients, 13 caregivers, 9 healthcare professionals, 4 industry representatives and 1 representative of the clergy.
Palliative care emerged as fundamental to the care and treatment of F-ILDs, regardless of disease progression. Unmet palliative care needs were identified as psychological and social support, disease education, inclusion of caregivers and practical/legal advice for disease progression and end-of-life planning. Participants identified diagnosis as a particularly distressing time for patients and families. They called for the introduction of palliative care discussions at this early-stage alongside improvements in integrated care, specifically increasing the involvement of primary care practitioners in referrals to palliative services.
Patients and caregivers need discussions on palliative care associated with F-ILD to be included at the point of diagnosis. This approach may address persisting inadequacies in service provision previously identified over the course of the last decade in the UK, Ireland and European F-ILD patient charters.
Multidisciplinary team meetings are a regular feature in the provision of palliative care, involving a range of professionals. Yet, their purpose and best format are not necessarily well understood or documented. This article describes how hospital and community-based palliative care multidisciplinary team meetings operate to elucidate some of their main values and offer an opportunity to share examples of good practice.
Ethnographic observations of over 70 multidisciplinary team meetings between May 2018 and January 2020 in hospital and community palliative care settings in intercity London. These observations were part of a larger study examining palliative care processes. Fieldnotes were thematically analysed.
This article analyses how the meetings operated in terms of their setup, participants and general order of business. Meetings provided a space where patients, families and professionals could be cared for through regular discussions of service provision.
Meetings served a variety of functions. Alongside discussing the more technical, clinical and practical aspects that are formally recognised aspects of the meetings, an additional core value was enabling affectual aspects of dealing with people who are dying to be acknowledged and processed collectively. Insight into how the meetings are structured and operate offer input for future practice.
Development of evidence-based good practice recommendations for clinicians considering the use of antibiotics in patients towards the end of life.
A multiprofessional group of experts in end-of-life care and antimicrobial stewardship was convened. Findings from a scoping review of the literature and a consultation of clinicians were triangulated. Expert discussion was used to generate consensus on how to approach decision-making.
Representatives from hospital and a range of community health and care settings.
Medical, pharmacy and nursing professionals.
Good practice recommendations based on published evidence and the experience of prescribers in Scotland.
The findings of 88 uncontrolled, observational studies of variable quality were considered alongside a survey of over 200 prescribers. No national or international guidelines were identified. Antibiotic use towards the end of life was common but practice was highly variable. The potential harms associated with giving antibiotics tended to be less well considered than the potential benefits. Antibiotics often extended the length of time to death but this was sometimes at the cost of higher symptom burden. There was strong consensus around the importance of effective communication with patients and their families and making treatment decisions aligned to a patient’s goals and priorities.
Good practice recommendations were agreed with focus on three areas: making shared decisions about future care; agreeing clear goals and limits of therapy; reviewing all antibiotic prescribing decisions regularly. These will be disseminated widely to support optimal care for patients towards the end of life. A patient version of the recommendations has also been produced to support implementation.
Shape of training has recognised that ‘Managing End-of-Life and Applying Palliative Care Skills’ is a key competency for internal medicine trainees. It provides the opportunity and challenge to improve palliative care training for generalist physicians. Simulation has been recognised internationally as a holistic teaching and assessment method. This study aimed to produce a palliative medicine simulation training package for internal medicine trainees for delivery by palliative medicine trainees providing the former opportunity to practice assessment and management of patients with life-limiting illness and the latter teaching and management opportunities.
A regional group of palliative medicine trainees were trained in simulation and debrief. Nominal and focus group techniques designed a simulation training package. Learning outcomes were mapped to the internal medicine curriculum descriptors.
Palliative simulation for internal medicine trainees (PALL-SIM-IMT) is a training package meeting internal medicine trainees’ curriculum requirements. Regional pilots have demonstrated feasibility for delivery by palliative medicine trainees and improvement in recipients’ confidence in all curriculum descriptors.
PALL-SIM-IMT can aid competency achievement for the provision of generalist palliative care by internal medicine trainees. It allows reciprocal development of palliative medicine trainees’ leadership and teaching skills. National adoption and evaluation is ongoing.
To estimate the capacity of European countries to integrate palliative care (PC) into their health systems through PC service provision for patients of all ages, with different care needs and diseases, in various settings and by a range of providers.
Secondary analysis of survey data from 51 countries with 22 indicators explored the integration of available PC resources for children, for patients of all ages, at the primary care level, for oncology and cardiac patients, and in long-term care facilities. We also measured volunteer participation. Results were quantified, converted into weighted subscores by area and combined into a single ‘Integration Capacity Score (ICS)’ for each country.
Thirty-eight countries reported 543 specialised paediatric PC services. One-third of all surveyed countries reported 20% or more of patients with PC needs at the primary care level. Twenty-four countries have a total of 155 designated centres that integrate oncology and PC. Eight countries were pioneering cardiology services that integrate PC. Eight reported a volunteer workforce of over 1000 and 12 had policies regulating PC provision and interventions in long-term care facilities. Across all indicators, 39 countries (76%) score from low to very low integration capacity, 8 (16%) score at an intermediate level, and 4 (8%; the Netherlands, UK, Germany and Switzerland) report a high-level integration of PC into their health systems.
Variable progress according to these indicators shows that most European countries are still in the process of integrating PC into their health systems.
To develop insights into response of palliative care services caring for people from ethnic minority groups during COVID-19.
Cross-sectional online survey of UK palliative care services response to COVID-19. Quantitative data were summarised descriptively and 2 tests used to explore relationships between categorical variables. Free text comments were analysed using reflexive thematic analysis.
277 UK services responded. 168 included hospice teams (76% of all UK hospice teams). Services supporting those from ethnic minority groups were more likely to include hospital (p<0.001) and less likely to include hospice (p<0.001) or home care teams (p=0.008). 34% (93/277) of services had cared for patients with COVID-19 or families from ethnic minority groups. 66% (61/93) of these services stated no difference in how they supported or reached these groups during the pandemic.
Three themes demonstrated impact of policy introduced during the pandemic, including: disproportionate adverse impact of restricted visiting, compounded communication challenges and unmet religious and faith needs. One theme demonstrated mistrust of services by ethnic minority groups, and the final theme demonstrated a focus on equal and individualised care.
Policies introduced during the COVID-19 pandemic may have adversely impacted those from ethnic minority groups making these at-risk populations even more vulnerable. The palliative care response may have been equal but inequitable. During the para-COVID-19 period, systemic steps, including equality impact assessments, are urgently needed.
A decision not to attempt cardiopulmonary resuscitation in the event of cardiorespiratory arrest requires a discussion between the doctor and the patient and/or their relatives. We aimed to determine how many older patients admitted to acute medical wards had a pre-existing 'do not attempt cardiopulmonary resuscitation' (DNACPR) decision, how many had one recorded on the ward and how many of those who died had a DNACPR decision in place.
A prospective cohort study, using data from medical records, of 481 consecutive patients aged ≥65 years admitted to the six acute medical wards of the John Radcliffe Hospital, Oxford.
105/481 (22%) had a DNACPR decision at ward admission, 30 of which had been made in the emergency unit. A further 45 decisions were recorded on the ward, mostly after discussion with relatives. Of the 37 patients who died, 36 had a DNACPR decision. For the 20 deceased patients whose DNACPR decision was recorded during their admission, the median time from documentation to death was 4 days with 7/20 (35%) recorded the day before death.
Older patients with multimorbidity need the opportunity to discuss the role of CPR earlier in their care and preferably before acute hospital admission.
To analyse treatments for relapses (particularly in the last weeks of life), assess their impact on the EOL, identify patients most likely to receive HI-EOL care and examine whether palliative care services can contain the intensity of EOL care.
This retrospective study involved patients treated at the paediatric oncology unit of the Istituto Nazionale Tumori in Milan who died between 2018 and 2020. The primary outcome was HI-EOL care, defined as: ≥1 session of intravenous chemotherapy <14 days before death; ≥1 hospitalisation in intensive care in the last 30 days of life and ≥1 emergency room admission in the last 30 days of life.
The study concerned 68 patients, and 17 had HI-EOL care. Patients given specific in-hospital treatments in the last 14 days of their life more frequently died in hospital. Those given aggressive EOL care were less likely to die at home or in the hospice. Patients with central nervous system (CNS) tumours were more likely to have treatments requiring hospitalisation, and to receive HI-EOL care.
These results underscore the importance of considering specific treatments at the EOL with caution. Treatments should be administered at home whenever possible.
The early activation of palliative care, especially for fragile and complicated patients like those with CNS cancers, could help families cope with the many problems they face.
The presence of comorbidities in people with lung cancer is common. Despite this, large-scale contemporary reports describing patterns and trends in comorbidities are limited.
Population-based patterns and trends analysis using Office for National Statistics Mortality Data. Our cohort included all adults who died from lung cancer (ICD-10 codes C33–C34) in England between 2001 and 2017. We describe decedents with 0, 1 or ≥2 comorbidities and explore changes overtime for the six most common comorbidities identified: chronic respiratory disease; diabetes; cardiovascular disease; dementia; cerebrovascular disease and chronic kidney disease. To determine future trends, the mean annual percentage change between 2001 and 2017 was calculated and projected forwards, while accounting for anticipated increases in lung cancer mortality.
There were 472 259 deaths from lung cancer (56.9% men; mean age 72.9 years, SD: 10.7). Overall, 19.0% of lung cancer decedents had 1 comorbidity at time of death and 8.8% had ≥2. The proportion of patients with comorbidities increased over time—between 2001 and 2017 decedents with 1 comorbidity increased 54.7%, while those with ≥2 increased 294.7%. The most common comorbidities were chronic respiratory disease and cardiovascular disease, contributing to 18.5% (95% CI: 18.0 to 18.9) and 11.4% (11.0 to 11.7) of deaths in 2017. Dementia and chronic kidney disease had the greatest increase in prevalence, increasing 311% and 289% respectively.
To deliver high-quality outcomes for the growing proportion of lung cancer patients with comorbidities, oncology teams need to work across traditional boundaries of care. Novel areas for development include integration with dementia and chronic kidney disease services.
There is an increased expectation that contemporary hospital design will improve clinical outcomes and patient experiences and support staff well-being. In response, this study examined innovative approaches in the design of in-patient palliative care facilities.
An ethnographic study comprised the identification and analysis of 30 architectural precedents, 24 qualitative, semistructured interviews with key stakeholders and 11 site visits, during which field notes and photographs were taken. Data were analysed using the framework approach, to identify design solutions that move beyond standard practice, to offer insight into the possibilities and challenges of processes of design or refurbishment in palliative care settings.
Three thematic areas of focus were derived from the analysis: (1) planning solutions that support privacy plus connection; (2) enhancing comfort through the use of non-standard materials—and managing the risks associated with those and (3) shaking off tradition in hospital design.
Myriad constraints resist innovation within the contemporary construction of hospital and hospice facilities. Drawing on a series of real-world examples, our findings point to the value of broad consultation and collaboration throughout the design process in achieving design solutions that go beyond standard practice for the benefit for patients, families and staff.
Parkinson’s disease (PD) is a significant cause of mortality but little is known about the place of death for patients with PD in the USA, a key metric of end-of-life care.
A trend analysis was conducted for years 2003–2017 using aggregated death certificate data from the Centers for Disease Control and Prevention Wide-ranging OnLine Data for Epidemiologic Research) database, with individual-level mortality data from the Mortality Multiple Cause-of-Death Public Use Record available between 2013 and 2017. All natural deaths for which PD was identified as an underlying cause of death were identified. Place of death was categorised as hospital, decedent home, hospice facility, nursing home/long-term care and other.
Between 2003 and 2017, 346141 deaths were attributed to PD (59% males, 93.7% White). Most deaths occurred in patients aged 75–84 years (43.9%), followed by those aged ≥85 years (40.9 %). Hospital and nursing home deaths decreased from 18% (n=3240) and 52.6% (n=9474) in 2003 to 9.2% (n=2949) and 42% (n=13 429) in 2017, respectively. Home deaths increased from 21.1% (n=3804) to 32.4% (n=10 347) and hospice facility deaths increased from 0.3% (n=47) in 2003 to 8.6% (n=2739) in 2017. Female sex, being married and college education were associated with increased odds of home deaths while Hispanic ethnicity and non-white race were associated with increased odds of hospital deaths.
Home and hospice facility deaths are gradually increasing in patients with PD. Particular attention should be provided to vulnerable socioeconomic groups that continue to have higher rates of hospital deaths and decreased usage of hospice facilities.
Although death is not uncommon for hospitalised patients with cancer, there are few interventions in oncology that are designed to create a dignified, compassionate end-of-life (EOL) experience for patients and families. The 3 Wishes Project (3WP), a programme in which clinicians elicit and implement final wishes for dying patients, has been shown effective in intensive care units (ICUs) at improving the EOL experience. The objective was to initiate 3WP on an oncology ward and evaluate its effect on family member experiences of their loved one’s EOL. We hypothesised that the 3WP can be implemented in the non-ICU setting and help oncological patients and their families with transition to the EOL.
When the patient’s probability of dying is greater than 95%, patients and families were invited to participate in the 3WP. Wishes were elicited, implemented and categorised. Audiorecorded, semistructured interviews were conducted with family members, transcribed and analysed using content analysis.
175 wishes were implemented for 52 patients with cancer (average cost of US$34). The most common wish (66%) was to personalise the environment. Qualitative analysis of 11 family member interviews revealed that the 3WP facilitates three transitions at the EOL: (1) the transition from multiple admissions to the final admission, (2) the transition of a predominantly caregiver role to a family member role and (3) the transition from a focus on the present to a focus on legacy.
The 3WP can be implemented on the oncology ward and enhance the EOL experience for hospitalised patients with cancer.
End-of-life and bereavement care support services differ in critical care and inpatient hospice settings. There are limited population-level data comparing deaths in these two locations. We aimed to compare the characteristics of people who die in critical care units and in hospices, identify factors associated with place of death and report 12-year trends in Scotland.
We undertook a cohort study of decedents aged ≥16 years in Scotland (2005–2017). Location of death was identified from linkage to the Scottish Intensive Care Society Audit Group database and National Records of Scotland Death Records. We developed a multinomial logistic regression model to identify factors independently associated with location of death.
There were 710 829 deaths in Scotland, of which 36 316 (5.1%) occurred in critical care units and 42 988 (6.1%) in hospices. As a proportion of acute hospital deaths, critical care deaths increased from 8.0% to 11.2%. Approximately one in eight deaths in those aged under 40 years occurred in critical care. Factors independently associated with hospice death included living in less deprived areas, cancer as the cause of death and presence of comorbidities. In contrast, liver disease and accidents as the cause of death and absence of comorbidities were associated with death in critical care.
Similar proportions of deaths in Scotland occur in critical care units and hospices. Given the younger age profile and unexpected nature of deaths occurring in critical care units, there is a need for a specific focus on end-of-life and bereavement support services in critical care units.
Nested qualitative studies within clinical trials provide the opportunity to better understand participant experiences of participation and identify areas where improved support is required. The purpose of this qualitative study is to describe the lived experiences of men with advanced prostate cancer participating in the TheraP trial; a randomised trial of 177Lu-PSMA-617 compared with cabazitaxel chemotherapy.
Fifteen men with advanced prostate cancer were recruited from the TheraP clinical trial and interviewed at three time points during the trial. Interviews were inductively analysed using thematic analysis. This research paper reports the results from the baseline interview at commencement of the trial, focusing specifically on participants’ enrolment experiences.
Four themes were identified representing the lived experiences of men with advanced prostate cancer deciding to participate in the TheraP trial: (1) hoping to survive; (2) needing to feel informed; (3) choosing to participate and (4) being randomised. The process of deciding to enrol in a clinical trial is filled with indecision, emotional difficulties and focused on a desire to live.
For men with advanced prostate cancer, the experience of deciding to enrol in a clinical trial is principally driven by a desire to survive but interlinked with the need to make an informed decision as participants in this study expressed a preference for allocation to the experimental arm. Men seeking to enrol in clinical trials of new prostate cancer treatments would benefit from improved informational and decision support.
NCT03392428, ANZUP1603.
Despite the deleterious consequences of iron deficiency (ID) in patients with cancer, underdiagnosis is frequent. The CARENFER study aimed to assess the prevalence of ID using both serum ferritin concentration and transferrin coefficient saturation (iron-saturation of transferrin, TSAT) index, as well as ID anaemia in patients with cancer.
This prospective cross-sectional study was conducted in 15 oncology units in France in 2019. All patients present in the medical unit during the 2-week study period, regardless of the type of tumour (solid or haematological) and treatment, were eligible. Serum ferritin concentration, TSAT index and haemoglobin level were determined. ID and ID-associated anaemia were defined according to European Society of Medical Oncology 2018 Guidelines: ID was defined either as ferritin <100 µg/L (absolute ID) or as ferritin ≥100 µg/L and TSAT <20% (functional ID).
A total of 1221 patients with different types of solid malignant tumours were analysed: median age 64 years; 89.4% under treatment for their cancer, mainly by chemotherapy (75.4%). Overall, ID was found in 57.9% (55.1–60.6) of patients. Among them, functional ID accounted for 64% of cases. ID anaemia was reported in 21.8% (19.6–24.2) of all patients with cancer. ID was highly prevalent in untreated (75/130, 57.4%) and non-anaemic (419/775, 54.1%) patients.
This study highlights the high prevalence of ID in patients with cancer, whether or not associated with anaemia or treatment. These results emphasise the need to a better detection and management of ID in cancer, thereby optimising overall patient care.
ClinicalTrials.gov Identifier: NCT03924271.
Little is known about the structure, accessibility, service provision and needs of palliative and hospice day-care in Germany and abroad. Researchers, healthcare providers and policy makers would benefit from a systematic overview.
The aim was to identify, describe and summarise available evidence on status, demand and practice models of palliative day-care clinics and day hospices. A secondary aim was to disclose research gaps and present recommendations for clinical practice and future research.
The scoping review followed the methodological framework of Arksey and O’Malley. The analysed publications included studies of varying kinds to describe the current state of the art.
Using a highly sensitive search strategy, the authors searched PubMed, Web of Science Core Collection, CINAHL and Google Scholar within the publication window of inception to 12 June 2020. An additional hand search of the reference lists of the identified review articles was conducted.
The authors screened the titles and abstracts of 2643 studies, retrieved 197 full texts and included 32 articles in the review. The review identified nine major themes: (1) the referral process, (2) models of care, (3) patient characteristics, (4) demand, (5) the discharge process, (6) perceptions of services, (7) funding and costs, (8) outcome measurement and (9) education.
There is a need for further research to identify groups of patients who would receive the most benefit from palliative and hospice day-care and to determine any necessary revisions in admission criteria.
The aims of this survey of healthcare interpreters were to assess the impacts of difficult conversations such as discussions involving explanation of a serious diagnosis, goals-of-care or death or dying and to discover interpreters’ opinions on ways to improve these conversations.
A purpose derived survey incorporating the Professional Quality of Life measure 5 was distributed to all healthcare interpreters in an Australian state. Outcome measures were to quantify levels of compassion satisfaction (CS), burn-out and secondary traumatic stress (STS), as well as to determine how well interpreters believed difficult conversations were being conducted and suggestions for improvement.
There were 94 respondents all scoring moderate (34.1%) or high (65.9%) on the CS score. No respondents scored high on burn-out or STS scales. Significant subgroup analysis was those aged 18–30 with higher burn-out scores. The two most common concerns raised were (1) not knowing the content prior to a discussion and (2) feeling guilty about delivering bad news. The two most frequent suggestions for improvement were (1) prebriefing with medical teams prior and (2) allowing opportunity to explain cultural concerns.
Interpreters surveyed were not experiencing burn-out or STS and had moderate or high CS scores. Recommendations are: further training and evidence-based guidelines for medical staff and healthcare interpreters in the facilitation of difficult conversations; prebriefing and debriefing for interpreters; further research to delineate the characteristics that predispose to compassion fatigue.
Real-world data are lacking on survival in patients with advanced gastroesophageal adenocarcinoma (GOA) treated with best supportive care (BSC) alone. This knowledge is vital to personalise cancer treatment and obtain informed consent. This study aimed to define and compare survival in patients with advanced GOA treated with and without palliative chemotherapy (CTx), and to explore the factors that impact prognosis.
Patients in NHS Tayside, Scotland, diagnosed with advanced GOA (defined as non-resectable) over a 2-year period were identified retrospectively. Clinical data were obtained from electronic records. Kaplan-Meier and Cox regression analysis were performed to determine median overall survival (mOS) and investigate contributing factors.
127 eligible patients were identified. There was a significant difference in mOS between patients in the BSC and CTx groups (3.1 months vs 8.9 months, p=0.00089). This was maintained when those deemed not fit for CTx were removed. One-year survival was 16% versus 33%. Cox regression analysis in the BSC group identified stage (p<0.001) and Eastern Cooperative Oncology Group performance status (ECOG PS) (p=0.013) as having independent predictive value for survival. Age was not related to outcome. Palliative stents were inserted in 48 patients (37.8%).
To our knowledge, this is the largest reported study in Europe of outcomes in patients with advanced GOA treated with BSC only. The mOS with BSC is approximately 3 months. Cancer stage and ECOG PS have a role in prognostication at diagnosis. Our findings support the benefit of palliative chemotherapy in this population, and real-world survival corresponds to published trial data.
We examine the impact of a 5-day online elective course in integrative medicine (IM) taking place during the COVID-19 pandemic, attended by 18 medical students from two faculties of medicine in Israel.
The course curriculum addressed effectiveness and safety of IM practices highlighting supportive and palliative care, demonstrated the work of integrative physicians (IPs) in designing patient-tailored treatments and taught practical skills in communication regarding IM. Group discussions were conducted via Zoom with 32 physicians, healthcare practitioners and IM practitioners working in integrative academic, community and hospital-based settings, in Israel, Italy, UK and Germany. An 18-item questionnaire examined student attitudes and perceived acquisition of skills for implementing what was learned in clinical practice. Student narratives were analysed using ATLAS.Ti software for systematic coding, identifying barriers and advantages of the online learning methodology.
Students reported a better understanding of the benefits of IM for specific outcomes (p=0.012) and of potential risks associated with these therapies (p=0.048). They also perceived the acquisition of skills related to the IM-focused history (p=0.006), learnt to identify effectiveness and safety of IM treatments (p=0.001), and internalised the referral to IPs for consultation (p=0.001). Student narratives included reflections on the tools provided during the course for assessing effectiveness and safety, enhancing communication with patients, enriching their patient-centred perspective, raising awareness of available therapeutic options, and personal and professional growth.
Online clinical electives in IM are feasible and can significantly increase students’ awareness and modify attitudes towards acquirement of patient-centred perspectives.
To determine, for doctors looking after older medical inpatients: (1) how difficult they find discussions about ‘do not attempt cardiopulmonary resuscitation’ (DNACPR); (2) whether difficulty is associated with doctors’ personal and professional characteristics; (3) how frequently DNACPR discussions are made more difficult by practical issues and by doctors’ uncertainties.
Survey of hospital doctors working on the acute medical wards of a UK NHS teaching hospital.
171/200 (86%) of eligible doctors participated. 165 had experience of DNACPR discussions with older inpatients and/or their families and were included in our analysis. ‘Difficulty’ (defined as finding discussions ‘fairly difficult’ or ‘difficult’) was experienced by 52/165 (32%) for discussions with patients and 60/165 (36%) for discussions with families. Doctors with specific training in DNACPR discussions were less likely to have difficulty in discussions with patients. Older, more experienced doctors were less likely to have difficulty in discussions with families. Lack of time and place, and uncertainty about prognosis were the most frequently reported causes of difficulty.
Many doctors have difficulty in DNACPR discussions. Training needs to include managing discussions with families, as well as with patients, and doctors need time and space to deliver this important part of their job.
Liver disease, a major cause of death worldwide, affects younger people compared with other major causes of death. Palliative and end-of-life care for these patients are often overlooked. Guidelines are emerging on what good end-of-life care in liver disease should look like, but there is a dearth of research into patients’ perspectives even though they are most affected by these guidelines.
To explore current knowledge and understanding of patients’ lived experiences, perspectives and expectations in relation to palliative and end-of-life care in advanced liver disease.
Systematic review with thematic synthesis complying to the enhancing transparency in reporting the synthesis of qualitative research (ENTREQ) statement.
Database searches (Ovid Medline, 1946–2021 and Web of Science, 1970–2021) to identify qualitative studies exploring patients’ perspectives of palliative and end-of-life care in advanced liver disease.
Only eight articles met all criteria. Themes demonstrated repeated hospital admissions towards the end of life, lack of coordinated care in community and barriers in discussion about palliative care in end-stage liver disease due to lack of confidence among professionals and a negative view about palliative care among patients and carers. Emotional, financial and disability-related needs of patients and their carers are often neglected.
There is a dearth of studies exploring patients’ perspectives about care in advanced liver disease relating to palliative and end-of-life care. Lack of coordinated community support and honest conversations around palliative care leads to reduced quality of life. More primary research from diverse population is needed to improve palliative care and end-of-life care in end-stage liver disease.
Predicting how long a patient with far advanced cancer has to live is a significant part of hospice and palliative care. Various prognostic models have been developed, but have not been fully compared in South Korea.
We aimed to compare the accuracy of the Prognosis in Palliative Care Study (PiPS), Palliative Prognostic Index (PPI), Palliative Prognostic Score (PaP) and Objective Prognostic Score (OPS) for patients with far advanced cancer in a palliative care unit in South Korea.
This prospective study included patients with far advanced cancer who were admitted to a single palliative care unit at the National University Hospital. Variables for calculating the prognostic models were recorded by a palliative care physician. The survival rate was estimated using the Kaplan-Meier method. The sensitivity, specificity, positive predictive value and negative predictive value of each model were calculated.
A total of 160 patients participated. There was a significant difference in survival rates across all groups, each categorised through the five prognostic models. The overall accuracy (OA) of the prognostic models ranged between 54.5% and 77.6%. The OA of clinicians’ predictions of survival ranged between 61.9% and 81.3%.
The PiPS, PPI, PaP and OPS were successfully validated in a palliative care unit of South Korea. There was no difference in accuracy between the prognostic models, and OA tended to be lower than in previous studies.
The rapid ageing population of Hong Kong has a high demand on oncology and palliative care (PC) service. This study was the first territory-wide assessment in Hong Kong to assess the palliative service coverage in patients with advanced cancer in the past decade.
Cancer deaths of all 43 public hospitals of Hong Kong were screened. Randomly selected 2800 cancer deaths formed a representative cohort in all seven service clusters of Hospital Authority at 4 time points (2006, 2009, 2012, 2015). Individual patient records were thoroughly reviewed. Predictors of PC coverage was evaluated in univariable and multivariable analyses.
From 2006 to 2015, PC coverage improved steadily from 55.4% to 68.9% (p<0.001). Median time of referral to PC service to death was 25 days (IQR: 53). For duration of inpatient PC, the median time was 22 days (IQR: 44) and it was stable over the past 10 years. Median time of referral to outpatient service to death was 74 days (IQR: 144) and there was an improvement observed (p<0.05). The current system was highly heterogeneous that PC varied between 9.8% and 84.8% in different hospitals depending on the PC service infrastructure. Multivariable Cox model identified patients associated with lower PC coverage: male, <50, rapid disease deterioration and staying in hospitals without multidisciplinary team clinic and designated palliative bed support (all p<0.01).
There was concrete achievement in palliative service development in the past decade. Heterogeneity and late service provision should be addressed in future.
The COVID-19 pandemic has led to many challenges such as increased number of patients and the risk of the disease progress in the world’s healthcare systems, especially nursing. The capacity of technology can help nursing in such conditions. The aim of this study was to explore the lived experiences of patients with COVID-19 with home care by using telenursing.
The present study is a qualitative research conducted using the descriptive phenomenological method. The participants were selected using purposive sampling method and considering the inclusion and exclusion criteria. After obtaining ethical approval, data were collected through semistructured interviews. Open-ended questions and follow-up were used in the interviews. The interviews were conducted using Skype application and telephone. All data were recorded, and MAXQDA software was used to manage the data. Data analysis was performed using Colaizzi’s seven-step method. Lincoln and Guba’s criteria were used to evaluate the trustworthiness of the data.
The main themes and their subthemes included ‘facilitators’ (improvement of relationships, adequate education and counselling, adequate care and support, improvement and promotion of health) and ‘barriers’ (lack of previous knowledge and experience, infrastructure problems, confusion in hospital programmes and the pressure caused by the COVID-19 pandemic).
Given the potential capacity of telenursing, strong field studies are recommended to be conducted in this area. The results of such studies can contribute to the rapid and serious use of telenursing in the area of care, education, support, follow-up and counselling of patients.
Evaluate the association of specialist palliative home care (HC) on emergency department (ED) visits in the 30 and 90 days prior to death.
This retrospective cohort study using administrative data identified 6976 adults deceased from cancer between 2008 and 2015, living ≥180 days after diagnosis of cancer, and residing in the urban Calgary Zone of Alberta Health Services. All palliative HC and generalist HC services were examined. Regression analyses examined the relationships of HC type to ED visits in the last 30 or 90 days of life.
In the last 30 days of life, compared with patients receiving palliative HC, patients receiving only generalist HC, or no HC, were more likely to visit the ED (OR)generalist-HC 1.19; 95% CI 1.06 to 1.34; ORno-HC 1.54; 95% CI 1.31 to 1.82). In the last 90 days of life, compared with patients receiving palliative HC, those receiving generalist HC (OR 1.48; 95% CI 1.32 to 1.67) and no HC (OR 1.66; 95% CI 1.39 to 1.99) had increased odds of visiting the ED.
Receiving generalist HC and no HC was associated with increased odds of visiting the ED in the last 30 and 90 days of life, when compared with patients receiving palliative HC. Improving access to palliative HC for patients at high risk of visiting the ED may reduce ED visits and acute care costs and improve quality of life in the last 90 days of life.
The COVID-19 pandemic has brought the use of telehealth to the fore, as many people have been unable to interact directly with healthcare professionals (HCP). For community palliative care (CPC) services, this has meant a sudden change from a predominantly face-to-face model of care to one that incorporates telehealth. Understanding patient and HCP experiences with telehealth and how telehealth compares to ‘usual’ care will be crucial in planning future CPC services.
All patients of the Barwon Health CPC service between 1 April and 31 May 2020 were invited to complete a questionnaire evaluating their interactions with the palliative care service and specifically their involvement with telehealth consultations. Palliative care HCP who provided clinical services during the same time period were also surveyed.
Seventy-four patients (response rate 36%) and 22 HCP returned surveys. Both groups felt comfortable using telehealth, however, also encountered a range of issues when undertaking telehealth consultations. Despite reporting issues, the preference of both groups was for a CPC service model, which combined face-to-face and telehealth consultations. This study is one of the first to directly ask this question and as such provides useful guidance for health services when planning future CPC service models.
In Europe, residential care homes (RCHs) rather than hospitals are the most common care facilities for the older adult and the place where most deaths occur in this age group. There is a lack of knowledge regarding end-of-life (EOL) discussions and how they correlate with symptoms and symptom relief.
The aim was to examine the correlation between EOL discussions and symptom occurrence, symptom relief and prescriptions or PRN drugs against symptoms for care home residents.
All expected deaths at RCHs from 1 October 2015 to 31 December 2016 and registered in the Swedish Register of Palliative Care were included. Univariate and multivariate logistic regression were used to compare the RCH residents, or their family members, who had received documented EOL discussions with a physician (the EOL discussion group) and the non-EOL discussion group.
The EOL discussion group (n=17 071) had a higher prevalence of pain, nausea, anxiety, death rattles and shortness of breath reported, compared with the non-EOL discussion group (n=4164). Those with symptoms were more often completely relieved and had more often been prescribed PRN drugs against that symptom in the EOL discussion group. All differences remained significant when adjusting for age, time living in unit and cause of death.
The results indicate that EOL discussions are correlated with higher prevalence of symptoms, but also with better symptom relief and prescription of symptom drugs PRN when symptomatic. A possible explanation for this is that the EOL discussion can work as an opportunity to discuss symptoms and treatment for symptom relief.
Providing care for our patients during the COVID-19 pandemic required a rapid shift to video consultations (VCs). A service evaluation was performed to capture hospice professionals’ (HPs) and patients’ experiences of VC.
Online or postal surveys were sent to HPs and patients, who had participated in VC between March and July 2020, focusing on their experience and satisfaction with the service.
31 responses from HPs were received. 19 (61.3%) rated their experience of VC as good, despite 29 (93.5%) having no prior VC experience. One-third of HPs had undertaken potentially sensitive consultations, including resuscitation discussions. 23 (74.2%) undertook a VC that included a family member and 18 (58.1%) had included an external healthcare professional. 25 (80.6%) wanted to offer VC as an option going forward. Well-being staff successfully provided multiple group support sessions via video. 26 responses from patients (23) and carers (3) were received. 22 (84.6%) had access to a smartphone. 8 (30.8%) included a family member in their consultation. All patients/carers reported satisfaction with their VC, although 10 (38.5%) expressed a preference for face-to-face consultations. 22 (84.6%) patients would be happy to receive care via VC going forward and 21 (80.8%) stated they would recommend the use of VC to others.
Patients reported VC to be an acceptable way to receive support from a hospice service and HPs would like to continue to offer VC in the future. VC can be offered as an alternative to face-to-face consultations with the potential to continue and improve access to a wide range of hospice services.
Patients with metastatic bone disease (MBD) should receive the same standard of care regardless of which centre they are treated in. The aim was to develop and test a set of quality performance indicators (QPIs) to evaluate care for patients with MBD referred to orthopaedics.
QPIs were adapted from the literature and ranked on feasibility and necessity during a modified RAND/Delphi consensus process. They were then validated and field tested in a retrospective cohort of 108 patients using indicator-specific targets set during consensus.
2568 articles including six guidelines were reviewed. 43 quality objectives were extracted and 40 proceeded to expert consensus. After two rounds, 18 QPIs for MBD care were generated, with the following generating the highest consensus: ‘Patients with high fracture risk should receive urgent assessment’ (combined mean 6.7/7, 95% CI 6.5 to 6.8) and ‘preoperative workup should include full blood tests including group and save’ (combined mean 6.7/7, 95% CI 6.5 to 6.9). In the pilot test, targets were met for 5/18 QPIs (mean 52%, standard deviation 22%). The median deviation from projected target was –14% (interquartile range –11% to –31%, range –74% to 11%). The highest scoring QPI was ‘adults with fractures should have surgery within 7 days’ (target 80%:actual 92%).
The published evidence and guidelines were adapted into a set of validated QPIs for MBD care which can be used to evaluate variation in care between centres. These QPIs should be correlated with outcome scores to determine whether they can act as predictors of outcome after surgery.
Assisted dying (AD) is increasingly becoming lawful internationally. While all AD models have oversight mechanisms, Victoria, Australia is rare in requiring formal approval before AD is permitted. Other jurisdictions are now enacting or implementing prospective approval models yet little is known about their operation. This paper reports the first empirical research internationally analysing the operation of a prospective approval model.
This qualitative study recruited doctors involved in providing lawful AD during the first year of the Victorian AD system. Recruitment occurred through the mandatory training doctors providing AD must undertake. Semistructured interviews were undertaken predominantly through Zoom conferencing, transcribed and thematically analysed.
32 doctors from diverse specialties (including general practice) and diverse AD experiences were interviewed. Six themes were identified: (1) The primary gatekeeping to AD in practice was by the administrative Secretariat of the oversight body, the Voluntary Assisted Dying Review Board, and not the government department who issues the final ‘permit’; this may not have been intended by parliament. (2) The prospective oversight and approval process was bureaucratic and (3) the mandatory online system to manage AD was a barrier. (4) These factors caused unnecessary delays which (5) impeded AD for very sick patients. (6) However, this prospective process protected doctors and ensured system safety.
Potential barriers to accessing AD posed by prospective approval should be evaluated carefully by jurisdictions implementing or considering such a model. Attention is needed not only to law but to system design and how AD is implemented in practice.
Insufficient knowledge about end-of-life law can impede the provision of safe and high-quality end-of-life care. Accurate legal knowledge across health professions is critical in palliative and end-of-life settings given the reliance on multidisciplinary care. Most research has focused on doctors, finding significant knowledge gaps. The limited evidence about other health professions also suggests legal knowledge deficits.
To determine and compare levels of knowledge about end-of-life law across a broad sample of Australian health professionals and medical students, and to identify predictors of legal knowledge.
An online pre-training survey was completed by participants enrolled in a national training programme on end-of-life law. The optional survey collected demographic data and measured baseline legal knowledge and attitudes towards end-of-life law.
Response rate was 67% (1653/2456). The final sample for analysis (n=1564, 95% of respondents), included doctors, medical students, nurses and a range of allied health professionals. Doctors and nurses had slightly higher levels of legal knowledge than did medical students and allied health professionals; all had critical knowledge gaps. Demographic and professional characteristics predicted knowledge levels, with experience of end-of-life law in practice, confidence applying law and recent continuing professional development being positively associated with legal knowledge.
This study provides new evidence about legal knowledge across a broad range of health professions. While knowledge levels varied somewhat across professions, knowledge gaps were observed in all professional groups. Education and training initiatives to enhance knowledge of end-of-life law should be tailored to meet the specific needs of each profession.
An increasing number of older patients are hospitalised. Prognostic uncertainty causes hospital doctors to be reluctant to make the switch from cure to care. The Supportive and Palliative Care Indicators Tool (SPICT) has not been validated for prognostication in an older hospitalised population.
To validate SPICT as a prognostic tool for risk of dying within one year in older hospitalised patients.
Prospective multicentre study. Premorbid SPICT and 1-year survival and survival time were assessed.
Patients 75 years and older admitted at acute geriatric (n=209) and cardiology units (CUs) (n=249) of four hospitals.
In total, 59.3% (124/209) was SPICT identified on acute geriatric vs 40.6% (101/249) on CUs (p<0.001). SPICT-identified patients in CUs reported more functional needs and more symptoms compared to SPICT non-identified patients. On acute geriatric units, SPICT-identified patients reported more functional needs only.
The HR of dying was 2.9 (95% CI 1.1 to 8.7) in SPICT-identified versus non-identified after adjustment for hospital strata, age, gender and did not differ between units. One-year mortality was 24% and 22%, respectively, on acute geriatric versus CUs (p=0.488). Pooled average sensitivity, specificity and partial area under the curve differed significantly between acute geriatric and CUs (p<0.001), respectively, 0.82 (95%CI 0.66 to 0.91), 0.49 (95%CI 0.40 to 0.58) and 0.82 in geriatric vs 0.69 (95% CI 0.42 to 0.87), 0.66 (95% CI 0.55 to 0.77) and 0.65 in CUs.
SPICT may be used as a tool to identify older hospitalised patients at risk of dying within 1 year and who may benefit from a palliative care approach including advance care planning. The prognostic accuracy of SPICT is better in older patients admitted at the acute geriatric versus the CU.
Abdominal pain and distention are common in ovarian tumours. When the ovarian tumour grows too large, the tumour can cause these symptoms. Percutaneous drainage from ovarian tumours, which can alleviate symptoms, is traditionally discouraged for its potential risk of peritoneal tumour seeding.
A 73-year-old woman with a multilocular ovarian tumour reporting abdominal fullness and pain was referred to the palliative care outpatient department. The multilocular tumour occupied most of the intra-abdominal space, which was determined to cause her symptoms. To alleviate her symptoms, we performed intermittent percutaneous drainage for 1.5 years. A clinical autopsy revealed the tumour was an ovarian mucinous carcinoma. Despite iterative tumour drainage, we observed no feature of peritoneal dissemination.
Intermittent percutaneous drainage of ovarian tumours could reduce tumour-related abdominal symptoms without pathological evidence of peritoneal dissemination. This procedure can be a new palliative treatment option for ovarian tumour-related abdominal symptoms.
To investigate whether there were any socioeconomic disparities in utilisation of hospital care services during end of life in Hong Kong.
Secondary data analyses were conducted using frequency of the accident and emergency (A&E) department visits and hospital admissions during the last year of life in all public hospitals from 2004 to 2014 in Hong Kong. A total of 1 237 044 A&E records from 357 853 patients, and 1 878 982 admission records from 375 506 patients were identified for analyses. In total, 395 019 unique deceased patients were identified from both datasets.
Regression analyses showed that comprehensive social security assistance (CSSA) recipients used A&E services 1.29 times more than the non-recipients. Being either a CSSA recipient or an elderly home resident was more likely to be admitted to hospitals and stayed longer. Elderly home residents tended to stay longer than those from the community in the earlier months during the last year of life regardless of CSSA status; however, non-elderly home residents surpassed the residents in the duration of stay at hospitals towards the later months of the last year of life. There were also significant differences in hospital utilisation across various districts of residence.
People of lower socioeconomic position tend to have higher emergency visits and hospitalisation during their last year of life in Hong Kong, implying the presence of health inequality during end of life. However, due to Hong Kong’s largely pro-rich primary care system, the predominantly public A&E and inpatient services may inadvertently act as a mitigator of such health inequalities.
When parents are facing a life-limiting fetal condition (LLFC), decision making about prenatal and neonatal care is very stressful. To participate in successful shared decision making, interdisciplinary care teams need to understand factors that parents consider and the process by which they make decisions about care of their baby.
This study reports on findings about parental decision making from a larger longitudinal, naturalistic study of parents’ experiences of continuing pregnancy with an LLFC. Mothers and fathers over 18 were interviewed in person, on phone or via video, twice during pregnancy and twice after birth and death. Transcripts were professionally transcribed and verified. Data were analysed with iterative coding and theme identification, using within-case and cross-case comparison.
Thirty parents (16 mothers, 13 fathers, 1 lesbian partner) from multiple US states and a range of racial/ethnic backgrounds were interviewed. Parents’ experience with decision making was difficult, stressful and time-sensitive. They described a three-phase process: (1) identifying the decision to be made, (2) conducting a risk–benefit analysis to weigh objective medical information and subjective factors (values and spirituality, impact on self, partner, baby and the other children) and (3) making a decision. Parents considered diagnostic and prognostic certainty, likelihood of a good outcome and avoidance of suffering and regrets.
For shared-decision making, healthcare providers must discuss objective medical information as well as recognise parents’ subjective values and priorities. This study expands on the literature on parental decision making around the numerous types of decisions after LLFC, informing obstetrics, neonatology and palliative care.
Patients with low health literacy (LHL) might feel less informed and satisfied with provided information than patients with high health literacy (HHL). In the setting of advanced cancer, we explored whether LHL patients, compared with HHL patients are: (1) often less informed, and (2) less satisfied with clinicians’ communication (a) in general and (b) following information provision specifically.
Data from two observational studies using recorded consultations were combined. Clinicians’ provided information and patients’ health literacy level—defined by educational levels—and satisfaction were measured. X2 tests and regression (moderation) analyses assessed the relation between health literacy and information provision, and between information provision and satisfaction, meanwhile exploring moderating influences of health literacy.
Of 61 included patients, 25 (41%) had LHL. LHL and HHL patients were equally seldom informed about the disease’s incurability (36% vs 42%, p=0.66). LHL patients were more often informed about the option of not pursuing anticancer therapy than HHL patients (28% vs 8%, p=0.04). LHL patients were more satisfied with clinicians’ communication than HHL patients (M=9.3 vs M=8.5, p=0.03), especially when the option of no anticancer treatment was discussed (p=0.04). Discussing the disease’s incurability did not influence satisfaction levels (p=0.58) for LHL and HHL patients.
LHL patients were not less informed, yet more satisfied than HHL patients. Both groups were equally seldom informed about the disease’s incurability. No anticancer therapy was mostly discussed with LHL patients who were more satisfied following this information. Clinicians should be encouraged to inform all patients about the disease status and (non)treatment options, while not overlooking empathic support.
The Prognosis in Palliative care Study II (PiPS2) was a large multicentre observational study validating prognostic tools in patients with advanced cancer. Many palliative care studies fail to reach their recruitment target. To inform future studies, PiPS2 rigorously monitored and identified any potential recruitment barriers.
Key recruitment stages (ie, whether patients were eligible for the study, approached by the researchers and whether consent was obtained for enrolment) were monitored via comprehensive screening logs at participating sites (inpatient hospices, hospitals and community palliative care teams). The reasons for patients’ ineligibility, inaccessibility or decision not to consent were documented.
17 014 patients were screened across 27 participating sites over a 20-month recruitment period. Of those, 4642 (27%) were ineligible for participation in the study primarily due to non-cancer diagnoses. Of 12 372 eligible patients, 9073 (73%) were not approached, the most common reason being a clinical decision not to do so. Other reasons included patients’ death or discharge before they were approached by the researchers. Of the 3299 approached patients, 1458 (44%) declined participation mainly because of feeling too unwell, experiencing severe distress or having other competing priorities. 11% (n=1841/17 014) of patients screened were enrolled in the study, representing 15% (n=1841/12 372) of eligible patients. Different recruitment patterns were observed across inpatient hospice, hospital and community palliative care teams.
The main barrier to recruitment was ‘accessing’ potentially eligible patients. Monitoring key recruitment stages may help to identify barriers and facilitators to enrolment and allow results to be put into better context.
Identification of patients with shortened life expectancy is a major obstacle to delivering palliative/end-of-life care. We previously developed the modified Hospitalised-patient One-year Mortality Risk (mHOMR) model for the automated identification of patients with an elevated 1-year mortality risk. Our goal was to investigate whether patients identified by mHOMR at high risk for mortality in the next year also have unmet palliative needs.
We conducted a prospective observational study at two quaternary healthcare facilities in Toronto, Canada, with patients admitted to general internal medicine service and identified by mHOMR to have an expected 1-year mortality risk of 10% or more. We measured patients’ unmet palliative needs—a severe uncontrolled symptom on the Edmonton Symptom Assessment Scale or readiness to engage in advance care planning (ACP) based on Sudore’s ACP Engagement Survey.
Of 518 patients identified by mHOMR, 403 (78%) patients consented to participate; 87% of those had either a severe uncontrolled symptom or readiness to engage in ACP, and 44% had both. Patients represented frailty (38%), cancer (28%) and organ failure (28%) trajectories were admitted for a median of 6 days, and 94% survived to discharge.
A large majority of hospitalised patients identified by mHOMR have unmet palliative needs, regardless of disease, and are identified early enough in their disease course that they may benefit from a palliative approach to their care. Adoption of such a model could improve the timely introduction of a palliative approach for patients, especially those with non-cancer illness.
When intended curative cancer surgery is not completed, the postoperative transition to palliative care represents a prognostic landmark to patients and their families. In patients referred for highly specialised surgery for peritoneal metastases from the intestinal tract and ovaries, surgery is not performed in approximately 25%. Still, little is known of their postoperative needs and preferences.
We performed 14 qualitative research interviews with 12 patients (four men and eight women, aged 41–85 years) undergoing surgery for peritoneal metastases; five of these were together with a relative. Five of the participants had ovarian, and seven had colorectal cancer (four men and seven women). The interviews followed a semistructured interview guide, were audio recorded, transcribed verbatim and analysed using meaning condensation.
Patients accepted the surgeon’s decision of refraining from the intended surgery. During the postoperative period, when realising the prognostic consequences, their needs changed rapidly, in some cases from day to day, and gradually they developed a reoriented focus on their lives. The findings were framed by two themes dealing with ‘Change in treatment strategy’ and ‘Physical and psychosocial aspects of not undergoing curative surgery’.
When curative cancer surgery is not completed as intended, patient-centred communication is essential for patients’ psychosocial reorientation and quality of life. Further, to support their well-being and action competences, patients have a need for basic supportive care and physical restitution. Finally, high-quality postoperative palliative care needs to be coordinated, which requires staff training and reorganisation of pathways.
In managing patients with cancer in the COVID-19 era, clinical oncologists and palliative care practitioners had to face new, disrupting and complex medical situations, challenging the quality of the shared decision-making process. During the first lockdown in France, we developed an onco-palliative ethics meeting to enhance the quality of the decision-making process for patients with advanced cancer treated for COVID-19.
A least one of the institutional ethics committee members was present along with oncologists, palliative care teams, psycho-oncologists, radiologists and intensive care specialists. Specific medical parameters were systematically collected to form a standardised framework for the discussions.
The main raised issues were the definition of new criteria for the implementation of invasive resuscitation techniques, optimal ways to adapt or delay anticancer treatment and best procedures to address terminal respiratory failure and end-of-life care. The main clinical and ethical guidelines that emerged during these debates are presented. The palliative care team played a major role in assessing and reporting patients’ awareness of cancer-related prognosis and their wishes concerning invasive therapies or transfer to intensive care units, enabling an individualised benefit–risk balance assessment. The ethics committee members ensured continuous monitoring during the discussions. Their function was to recall the main ethical principles including dignity, which is conferred on people when there are treated as having equal status.
The onco-palliative ethics meeting provided a powerful avenue for improvement of collegiality and reinforcement of teamwork, which could be a major protection against burnout for healthcare professionals facing an epidemic onslaught.
To determine risk factors for catheter survival and complications after image-guided implantation of a totally implanted vascular access device (TIVAD).
A total of 2883 TIVADs (2735 patients, 63.5±13 years old, 1060 men, 1675 women) implanted under guidance by ultrasound and fluoroscopy in our institution from January 2010 to December 2019 were evaluated retrospectively. We used the log rank test and logistic regression to analyse risk factors associated with catheter survival and complications.
Female patients (n=1778; 61.7%; mean catheter survival days: 780.6 days) and those with a haematological malignancy (n=277; 10.1%; mean catheter survival days: 1019 days) had significantly better catheter survival than male patients (n=1105; 38.3%; mean catheter survival days: 645.9 days) and those with a solid organ malignancy (n=2447; 89.5%; mean catheter survival days: 701 days) (p<0.001 and p=0.003). Patients with haematological malignancies and benign vascular inflammatory disease (n=11; 0.4%) were vulnerable to infection (n=96; 3.3%) (p<0.001 and p=0.004). Thrombotic malfunction (n=38; 1.3%) was significantly more common in females than males (p=0.005). Non-thrombotic malfunction (n=16; 0.6%) showed a significant association with left positioning of the TIVAD (n=410; 14.2%) (p=0.043). Wound dehiscence (n=3; 0.1%) was significantly more frequent in punctured veins other (n=23; 0.8%) than the internal jugular vein (p<0.001).
Increased attention should be paid to patients with an underlying haematological malignancy, underlying vascular inflammatory disease, female patients, older patients, those accessed via a vein other than the IJV, those with left positioning of the TIVAD system or those with a prolonged TIVAD maintenance.
Unplanned hospitalisations can be burdensome for older people who approach the end of life. Hospitalisations disrupt the continuity of care and often run against patients’ preference for comfort and palliative goals of care. This study aimed to describe the patterns of unplanned hospitalisations across illness trajectories in the last year of life.
Longitudinal, retrospective cohort study of decedents, including all older adults (≥65 years) who died in Sweden in 2015. We used nationwide data from the National Cause of Death Register linked at the individual level with several other administrative and healthcare registers. Illness trajectories were defined based on multiple-cause-of-death data to approximate functional decline near the end of life. Incidence rate ratios (IRR) for unplanned hospitalisations were modelled with zero-inflated Poisson regressions.
In a total of 77 315 older decedents (53% women, median age 85.2 years), the overall incidence rate of unplanned hospitalisations during the last year of life was 175 per 100 patient-years. The adjusted IRR for unplanned hospitalisation was 1.20 (95%CI 1.18 to 1.21) times higher than average among decedents who followed a trajectory of cancer. Conversely, decedents who followed the trajectory of prolonged dwindling had a lower-than-average risk of unplanned hospitalisation (IRR 0.66, 95% CI 0.65 to 0.68). However, these differences between illness trajectories only became evident during the last 3 months of life.
Our study highlights that, during the last 3 months of life, unplanned hospitalisations are increasingly frequent. Policies aiming to reduce burdensome care transitions should consider the underlying illness trajectories.
Evidence-based guidelines call for integration of palliative care within oncology from diagnosis. Misperceptions about palliative care have impeded implementation. Prior research has not examined perceptions about ‘palliative care’ versus ‘supportive care’ among patients and caregivers to whom this care is introduced routinely as part of comprehensive cancer care. We conducted a qualitative study of patients with myelodysplastic syndromes (MDS) and their informal caregivers to elicit perceptions of ‘palliative care’ and ‘supportive care’ before and after they received integrated primary/specialist palliative care from diagnosis.
Patients with newly diagnosed MDS and caregivers were interviewed about their understanding of ‘palliative care’ and ‘supportive care’ at diagnosis and follow-up. Interviews were audio-recorded, transcribed, and analysed by an interdisciplinary team.
Forty-eight interviews were conducted in total, including with 21 patients and 13 caregivers at diagnosis, and 10 patients and 4 caregivers at follow-up. Initially, 28/34 participants (82%) associated ‘palliative care’ with death or fear/alarm. At follow-up, 11/14 participants (79%) recognised that ‘palliative care’ is not only for terminally ill patients, yet 13/14 participants (93%) still felt apprehensive about the term. Initially, 24/34 participants (71%) felt ‘supportive care’ sounded ‘positive’ and 12/14 participants (86%) reported this at follow-up. No participant associated ‘supportive care’ with death or fear/alarm at either time point. Among participants who had a preference, ‘supportive care’ was the preferred term initially and at follow-up.
Patients with MDS and caregivers receiving integrated primary/specialist palliative care from diagnosis responded more favourably to and felt less apprehensive about ‘supportive care’, initially and at follow-up.
Prison populations around the world are ageing and numbers are rising, leading to greater demand for palliative care for prisoners approaching the end of life. This paper reports a survey that was undertaken by the European Association for Palliative Care Task Force on mapping palliative care provision for prisoners in Europe. The Task Force was established to begin to address the gap in research knowledge by exploring prison systems and care provision across different countries.
The survey, developed by the Task Force Steering Committee, consisted of 40 questions in six sections. It was completed through online searches; only data that were publicly available on the internet were included. Numerical data were analysed using descriptive statistics, and thematic comparisons were made of free-text data.
The survey was completed for eight countries: Australia, Belgium, Czech Republic, England and Wales, France, Portugal, Scotland and Slovakia. Three main findings are reported here: healthcare and palliative care provision in prisons, deaths in custody and compassionate release. Despite increasing numbers of older prisoners, relatively few prisons provide inpatient care, and only one country has any prisons that provide dedicated palliative care services. Early release on compassionate grounds is extremely rare in most countries.
For the principle of equivalence to be adhered to, facilities for sick and dying prisoners need to be improved, or many more people need to be released on compassionate grounds at the end of life. This mapping study has identified key issues in relation to palliative care in prison and provides the basis for further international research.
Patients’ needs are still underestimated during the course of cancer. The development of a simple and accessible screening tool to screen supportive care needs is an innovative approach to improve the cancer care pathway. The Supportive Care sCore (SCC) is a new tool developed to trigger alerts on the main supportive care needs, such as social, nutritional, physical, pain or psychological disorders. We aimed to develop and validate the SCC tool in identifying supportive care needs.
The SCC, the Edmonton Symptom Assessment System (ESAS) and the EuroQol-5 Dimension (EQ-5D) questionnaire (for quality of life) were distributed to patients with cancer over a week in an ambulatory hospital of an oncology department. Acceptability was measured by assessing the fill rate. Validity of alerts generated by the SCC was assessed by their consistency with the ESAS and EQ-5D scores.
One hundred patients were included, with an average age of 67.2 years. Acceptability was good with a fill rate of over 90%. For a priori-defined risk groups by SCC with alert or not, the ESAS symptom score and quality of life differed significantly (p<0.05) between groups. We observed higher ESAS symptom scores in the alert group (nutritional alert-appetite: 4 (SD 2.4) vs 0 (SD 2.6), p<0.001; physical alert-fatigue: 4 (SD 1.7) vs 2 (SD 2.2), p<0.001; psychological alert-depressed: 3.5 (SD 2.7) vs 0 (SD 1.5), p<0.001). Quality of life was poorer in each domain of the EQ-5D in the alert group.
Our study demonstrates the construct validity of SCC, which holds promise in identifying supportive care needs.
Faith-based organisations (FBOs) in India provide health services particularly to marginalised communities. We studied their preparedness and delivery of palliative care during COVID-19 as part of a mixed-method study. We present the results of an online questionnaire.
All FBOs providing palliative care in India were invited to complete an online questionnaire. Descriptive analysis was undertaken.
Response rate was 46/64 (72%); 44 provided palliative care; 30/44 (68%) were in rural or semiurban areas with 10–2700 beds. Fifty-two per cent (23/44) had dedicated palliative care teams and 30/44 (68%) provided it as part of general services; 17/44 (39%) provided both. 29/44 (66%) provided palliative care for cancer patients; 17/44 (34%) reported that this was more than half their workload.
The pandemic led to reduced clinical work: hospital 36/44 (82%) and community 40/44 (91%); with reduction in hospital income for 41/44 (93%). 18/44 (44%) were designated government COVID-19 centres; 11/40 (32%) had admitted between 1 and 2230 COVID-19 patients.
COVID-19 brought challenges: 14/44 (32%) lacked personal protective equipment; 21/44 (48%) had reduced hospital supplies and 19/44 (43%) lacked key medications including morphine. 29/44 (66%) reported reduction in palliative care work; 7/44 (16%) had stopped altogether. Twenty-three per cent (10/44) reported redeployment of palliative care teams to other work. For those providing, palliative care 32/37 (86%) was principally for non-COVID patients; 13/37 (35%) cared for COVID-19 patients. Service adaptations included: teleconsultation, triaged home visits, medication delivery at home and food supply.
FBOs in India providing palliative care had continued to do so despite multiple challenges. Services were adapted to enable ongoing patient care. Further research is exploring the effects of COVID-19 in greater depth.
To support greater personalisation of end-of-life care, Electronic Palliative Care Coordination Systems (EPaCCS) have been implemented across England. Here, we describe patient factors associated with dying with an EPaCCS record and explore the association between having an EPaCCS record with cause and place of death.
This is a cross-sectional study using routinely collected data. Data were extracted from primary care records in 20 of 86 general practices within one Clinical Commissioning Group in England. All deaths (n=1723) recorded between 22 February 2018 and 21 February 2019 were included to determine whether the deceased patient had an EPaCCS record at the time of death, a range of demographic factors, place of death and cause of death.
Only 18% of the sample died with an EPaCCS record, and people who died of a non-cancer cause were less likely to have an EPaCCS record than those who died of cancer (OR=0.41; 95% CI 0.31 to 0.55). Adjusting for patient demographic factors and cause of death, having an EPaCCS record was strongly associated with dying in the community (OR=5.10; 95% CI 3.70 to 7.03).
A small proportion of this sample died with an EPaCCS record, despite evidence of an association with dying in the community.
The aim of this study is to collect the perspectives and values of people affected by amyotrophic lateral sclerosis (ALS) and their carers to offer clinicians, researchers and policymakers aspects which are precious in prioritising future research questions and reshaping care service organisations in a participatory approach.
Cohort study using ALS Umbria, the electronic database in Italy.
Eleven patients and 33 carers who agreed to participate in the study were divided into six focus groups by ‘status’ (patient or carer) and by four severity levels of ‘burden of disease’.
A semiquantitative analysis was undertaken. Each recorded group discussion was transcribed into text file and independently read by two psychologists and two ALS specialists to blindly identify needs, emotions and medical issues, which are the key semantic meanings expressed. Any disagreement in interpretation was resolved through consultation among authors.
Carers pronounced significantly more words related to patient’s disease burden they cared. 40% of subjects expressed the need for ‘assistance’, regardless of the disease burden. ‘Anger’ alone represented more than 1/4 of all expressed emotions and was more common in patients than in carers (73% vs 36%, p=0.077). The most frequent medical issue expressed by 1/3 of participants was ‘difficulty in communication’.
This study has given voice to the expectations of those affected by the burden of ALS. ‘Welfare assistance’, ‘anger management’ and resolution of ‘difficulties in communication’ represent issues that need to be analysed in a common prioritised research agenda with sensible and shared outcome measures to implement patient-centred medicine.
Idiopathic pulmonary fibrosis (IPF) is a progressive, incurable fibrotic lung disease in which patients and caregivers report a high symptom burden. Symptoms are often poorly managed and patients and caregivers struggle to alleviate their distress in the absence of self-management support.
To explore perceptions of symptoms, symptom management strategies and self-efficacy for patients with IPF and caregivers who received self-management education and action plans created and provided in a Multidisciplinary Collaborative Interstitial Lung Disease (MDC-ILD) Clinic.
A qualitative study was conducted with participants recruited from the MDC-ILD Clinic. Participants received an early integrated palliative approach; most attended ILD pulmonary rehabilitation and some received home care support. Semistructured interviews were conducted. Patient participants completed Measure Yourself Medical Outcome Profile (MYMOP) for symptom assessment and Chronic Obstructive Pulmonary Disease Self-Efficacy Scale to assess self-management efficacy.
Thirteen patients and eight self-declared caregiver participants were interviewed. IPF severity ranged from mild to advanced disease. Participants integrated and personalised self-management strategies. They were intentional and confident, focused on living well and engaged in anticipatory planning. Twelve participants completed the MYMOP. Five reported dyspnoea. Four reported fatigue as an additional or only symptom. One reported cough. Five declared no dyspnoea, cough or fatigue. Participants reported 80% self-efficacy in symptom management.
The approach to symptom self-management and education was beneficial to patients with IPF and caregiver participants. Participants personalised the strategies, focusing on living, and planned both in the moment and for the future. They were confident and expressed dignity and meaning in their lives.
Psychological suffering is ubiquitous with cancer and frequently presents as an unmet supportive care need. In clinical practice, distress-related needs are often addressed by nurses and non-psychologist allied healthcare professionals who may have limited training in psychological therapeutic frameworks, particularly more recently developed interventions such as Acceptance and Commitment Therapy (ACT).
We developed a single-day training programme for professionals working in supportive and palliative cancer care settings to change the nature of clinical communication about psychological distress and suffering towards an ACT-consistent approach.
We report on experiences of training delivery, and evaluation data about training satisfaction and intention to apply the training to clinical practice, from three training iterations in British and Australian, government-funded and charitable sectors. One hundred and sixteen cancer care professionals participated in the training. Evaluation data were collected from 53 participants (at either 2-week or 3-month follow-ups, or both) using self-report survey, including both quantitative and free-text questions.
At 2 week follow-up, 73% of trainees rating our course as having relevance to their work, and at 3 month follow-up, 46% agreed that they were better placed to provide improved clinical services. Qualitative feedback supported the inclusion of experiential learning and theoretical explanations underpinning ACT techniques. Undertaking this training did not significantly increase trainees’ stress levels, nor did implementation of this new way of working negatively affect staff well-being. Positive, ACT-consistent, changes in communication behaviours and attitudes were reported, however there was a lack of significant change in psychological flexibility.
Acceptability and applicability of this training to supportive and palliative healthcare is positive. The lack of change in psychological flexibility suggests a potential need for more experiential content in the training programme. Logistical challenges in one training group suggests the need for more robust train-the-trainer models moving forward.
International medical graduates (IMGs) who pursue additional training in another country may encounter unique challenges that compromise their learning experience. This paper describes the development of an Online Bridging Program in the Division of Palliative Care at the University Health Network Toronto and examines its effectiveness in improving IMGs’ readiness for Canadian fellowship training.
The annual Online Bridging Program was developed to help new IMGs transitioning to Canadian palliative fellowship using Kern’s framework for curriculum development. Following a needs assessment, eight online modules with weekly live sessions were developed and underwent external content validation and usability tests. After each iteration, the programme was improved based on participant feedback. Evaluation was conducted first through an online survey immediately on completion of the programme and then through qualitative interviews 6 months into the fellowship. The interviews were analysed using Braun and Clarke’s model for thematic analysis.
Nine IMGs participated in the Online Bridging Program from 2018 to 2020. All nine participated in the survey and eight in the interviews. Responses to the online survey were almost unanimously positive, suggesting its effectiveness in assisting the IMGs’ transitions into fellowship. The interviews revealed four major themes: the importance of combining online modules and live sessions, reducing the fellows’ anxiety and easing the transition into their new role, an improved overall learning experience and recognising online format limitations.
The Online Bridging Program effectively eased IMG palliative medicine fellows’ transition into training and enhanced their learning experience.
Palliative care (PC) service involvement for hepatocellular carcinoma (HCC) patients is suboptimal and little is known about the underlying reasons for this. We aimed to study clinicians’ experience and attitudes towards PC in HCC.
A nationwide survey was conducted of consultants/trainees recruited from the Gastroenterological Society of Australia membership directory. Clinician demographics, experience and attitudes towards PC use for HCC patients were collected.
There were 160 participants. Most attended weekly multidisciplinary team meetings (MDTM, 60%) and had no formal PC training (71%). MDTM with PC attendance was reported by 12%. Rates of PC referral increased incrementally from BCLC 0/A to D patients but were not universal even in advanced (46%) or terminal (87%) stages. Most acknowledged PC patient discussions occurred too late (61%). Those with prior PC training were more likely to refer BCLC 0/A and B patients for early PC. Referral rates for outpatient PC were higher in respondents who attended MDTM with PC present across all BCLC stages. PC service was rated good/very good by 70%/81% for outpatients/inpatients. Barriers to PC referral included clinician-perceived negative patient associations with PC (83%), clinician-perceived patient/caregiver lack of acceptance (81%/77%) and insufficient time (70%).
PC referral for HCC patients is not universal and occurs late even in late-stage disease. Prior PC training and/or PC presence at MDTM positively influences referral practices. Barriers to PC referral are not related to quality of PC services but rather to clinician-perceived patients’ negative reactions to or lack of acceptance of PC.
Advanced kidney disease is associated with a high risk of morbidity and mortality. Consequently, invasive treatments such as dialysis may not yield survival benefits. Advance care planning has been encouraged. However, whether such discussions are acceptable when done earlier, before end-stage kidney treatment decision-making occurs, is unclear. This pilot study aimed to explore whether use of the Serious Illness Conversation Guide to aid early advance care planning is acceptable, and to evaluate the information gained from these conversations.
Patients with advanced kidney disease (stage 3B and above) and high mortality risk at 2 years were enrolled in this mixed-methods study from an academic nephrology clinic. Semi-structured interviews were conducted using the adapted Serious Illness Conversation Guide. Thematic analysis was used to assess patients’ perceptions of the conversation. Participants completed a questionnaire assessing conversation acceptability.
Twenty-six patients participated, 50% were female. Participants felt that the conversation guide helped them reflect on their prognosis, goals of care and treatment preferences. Most did not feel that the conversation provoked anxiety (23/26, 88%) nor that it decreased hopefulness (24/26, 92%). Some challenges were elicited; patients expressed cognitive dissonance with the kidney disease severity due to lack of symptoms; had difficulty conceptualising their goals of care; and vocalised fear of personal failure without attempting dialysis.
Patients in this pilot study found the adapted Serious Illness Conversation Guide acceptable. This guide may be used with patients early in the course of advanced kidney disease to gather information for future advanced care planning.
A rising burden from end-stage kidney disease with poor outcomes in the frail, elderly population has seen the emergence of a non-dialytic option, also known as maximum conservative management (MCM). Despite an established MCM programme in our institution, it was anecdotally observed that some MCM patients would end up being dialysed short and long term. We explored treatment modality changes from MCM to renal replacement therapy (RRT), the reasons surrounding the change, and aimed to quantify survival in this cohort of patients.
44 patients were identified as being MCM, who changed modalities to RRT, from 2000 to 2015, using the Royal Free Hospital Renal Unit’s database. Electronic health records were reviewed retrospectively. Associations with 12-month mortality were explored and Kaplan-Meier method used to predict survival.
The most common modality change was to haemodialysis (81%), with one transplantation, and rest peritoneal dialysis. 28 patients commenced dialysis as unplanned starters, with the most common symptom being fluid overload. One-year survival was associated with increased age (75 vs 83, p=0.004, for alive vs dead) and had lower mean Charlson Comorbidity Index (6.2 vs 7.3, p=0.021). Median survival of 65 months following RRT initiation was predicted by the Kaplan-Meier method.
Patients changed modalities from MCM to RRT due to symptoms, the most common being fluid overload. Despite an unplanned change to RRT, survival appears to be significant at 65 months in this study, indicating clinicians are continuing to offer RRT to patients appropriately.
Family involvement in decision making for hospitalised patients is associated with improved end-of-life care. Yet, these discussions can be challenging for physicians and families and associated with distress, confusion and conflict. There is a need to understand how best to support families involved in decisions regarding the transition from active to palliative treatment in hospital settings.
To explore bereaved families’ experiences of end-of-life decision making for general medicine patients.
A qualitative exploratory study framed by social constructionism using semistructured interviews and thematic analysis.
The general medicine units of one large public hospital in Melbourne, Australia. We recruited 28 bereaved family members of patients who had received end-of-life care.
Patients and families depended on physicians to explain clinical complexity and treatment beneficence; however, trust in medical judgement was mediated by participant’s own interpretations of clinical progress. Families sought to be respected as advocates and experienced distress if physicians disregarded their perspectives and insight concerning patient preferences. Ideally, families supported patients to express their preferences to physicians. Otherwise, families contextualised treatment decisions through their knowledge of patient’s values and quality of life. Families often felt burdened by or excluded from medical decision making and experienced distress and confusion regarding their rights to request or refuse treatment.
Our study highlights how families contribute to decision making to ensure end-of-life care treatments reflect patient preferences. Physicians can ease families’ distress around treatment withdrawal by providing a meaningful explanation of complex clinical issues, clarifying decision-making roles and acknowledge families’ desire to protect and advocate for their loved one.
To describe the Australian adult public’s knowledge and experiences regarding substitute decision-making for medical decisions and their preferences for obtaining information about the substitute decision-maker (SDM) role.
This is a national cross-sectional online survey of the Australian adult public. The survey examined participants’ advance care planning (ACP) awareness and experience, SDM experiences and preferences for obtaining more information about SDM, and participant knowledge about SDM.
Of 1586 people who opened the survey, 1120 (70.6%) were included in the final sample. 13% (n=142) of participants indicated they had acted as an SDM. A median score of two correct responses out of five showed low to moderate knowledge about the SDM role among all participants, with only 33% reporting awareness of SDM laws existing in Australia. While most (59%) participants ranked a health professional as their preferred source of obtaining information about supporting SDMs, few participants who had been an SDM (n=64, 45%) reported obtaining any support in making medical decisions. The median SDM knowledge scores for people who had discussed ACP (3.0 vs 2.0, U=1 45 222, z=6.910, p<0.001), documented their ACP preferences (3.0 vs 2.0, U=71 984, z=4.087, p<0.001) or acted in the SDM role (3.0 vs 2.0, U=56 353, z=–3.694, p<0.001) were significantly higher compared with those who had not.
The Australian public may have low to moderate knowledge about the SDM role and access only minimal support when making challenging medical decisions.
Endoscopic biliary drainage is a first-line treatment in patients with unresectable malignant biliary obstruction. In most cases the drainage is conducted using endoscopic retrograde cholangiopancreatography (ERCP). Percutaneous transhepatic biliary drainage or endosonography-guided biliary drainage (EUS-BD) represents therapeutic options after unsuccessful ERCP. Here we report on 2 years experience in the management of patients diagnosed with malignant biliary obstruction using EUS-BD.
Retrospective data were collected on patients who underwent EUS-BD due to malignant biliary obstruction at our centre between April 2016 and April 2018. Only patients who had two unsuccessful attempts of ERCP prior to EUS-BD were included. We analysed the technical success (ie, creation of anastomosis and successful placement of a stent) and complication rate of EUS-BD, and monitored changes in serum bilirubin and liver function tests after 2 days, and at least 2 weeks, following the procedure.
Screening of 1781 ERCP procedures performed in our department during the inclusion period led to the identification of 31 patients (18 women, age range 51–92 years, 58% with pancreatic cancer) who fulfilled the inclusion criteria. Hepaticogastrostomy and choledochoduodenostomy were performed in 12 and 19 patients, respectively. The technical success rate was 97% and the complication rate was 12.9%. EUS-BD resulted in a significant decrease in serum bilirubin (p<0.01).
EUS-BD represents a reasonable therapeutic option after unsuccessful ERCP in patients with malignant biliary obstruction. Possible complications have to be kept in mind and this procedure should be performed at centres experienced in ERCP and EUS.
Qualitative semistructured interviews with a purposive sample of nursing home staff. Interviews were conducted by one researcher and transcribed verbatim. Line-by-line coding and categorisation were used to form themes.
Eleven interviews were completed with data saturation reached by interview eight. The following themes were revealed: Barriers and facilitators to accessing Project ECHO, Community of Practice and Communication with nursing homes and data extraction.
Project ECHO is an accessible, acceptable and engaging way of delivering palliative care education to nursing homes combatting some of the traditional barriers that nursing homes face in accessing training.
We report a case of using 3D printing to create a bespoke eye cover for an 18-year-old man with left maxillary alveolar rhabdomyosarcoma. Further, the patient had proptosis causing chemosis and subsequent conjunctival abrasions. This had been managed by taping a large dressing around the eye for a number of weeks previously.
A 3D scanner was used to capture the surface topography of the patients face. The data were imported into a CAD package and used as a guide to create a bespoke eye cover. The final design was 3D printed in a biocompatible material for use by the patient.
The scan, modelling, and printing of the bespoke cover was completed successfully in less than 72 hours.
3D printing offers a method to create bespoke solutions for patients in palliative care to meet rare and difficult clinical challenges.
Accurate assessment that a patient is in the last phase of life is a prerequisite for timely initiation of palliative care in patients with a life-limiting disease, such as advanced cancer or advanced organ failure. Several palliative care quality standards recommend the surprise question (SQ) to identify those patients. Little is known about physicians’ views on identifying and disclosing the last phase of life of patients with different illness trajectories.
Data from two focus groups were analysed using thematic analysis with a phenomenological approach.
Fifteen medical specialists and general practitioners participated. Participants thought prediction of patients’ last phase of life, i.e. expected death within 1 year, is important. They seemed to find that prediction is more difficult in patients with advanced organ failure compared with cancer. The SQ was considered a useful prognostic tool; its use is facilitated by its simplicity but hampered by its subjective character. The medical specialist was considered mainly responsible for prognosticating and gradually disclosing the last phase. Participants’ reluctance to such disclosure was related to uncertainty around prognostication, concerns about depriving patients of hope, affecting the physician–patient relationship, or a lack of time or availability of palliative care services.
Physicians consider the assessment of patients’ last phase of life important and support use of the SQ in patients with different illness trajectories. However, barriers in disclosing expected death are prognostic uncertainty, possible deprivation of hope, physician–patient relationship, and lack of time or palliative care services. Future studies should examine patients’ preferences for those discussions.
Providing optimal palliative and end-of-life care for people in prison with advanced progressive disease is a growing challenge. This study aimed to examine hospital and palliative care utilisation for people in prison who are hospitalised during the final 3 months of life and to compare with a disease-matched non-incarcerated patient cohort.
A retrospective cohort study of people in prison who died between 2009 and 2019 in an Australian public hospital that provides tertiary-level healthcare for 18% of Australia’s prison population. Demographic, clinical and service use data were extracted from medical records of eligible patients experiencing incarceration (prison group) and a disease-matched, non-incarcerated patient comparator group (comparator group).
At the time of death, patients in the prison group were aged a median of 20 years younger than the comparator group (median age 58 vs 78 years, p<0.01). The prison group experienced more than double the mean length of acute care hospital stay at the end of life. A higher proportion of patients in the prison group experienced an intensive care unit episode (22% vs 12%). More than two-thirds (71%) of the prison group patients were seen by palliative care prior to death, similar to the comparator group (p=0.44). Those transferred to the palliative care unit had a shorter length of stay and were admitted later, just prior to death (median 5 vs 8 days).
People in prison have prolonged acute care public hospital stays and are more likely to experience escalation of care at the end of life. Future opportunity may exist for increased access to formal subacute care settings for people in prison with life-limiting illness to receive optimal palliative and end-of-life care.
To develop and validate a prognostic model to assess mortality risk at 24 months in patients with advanced chronic conditions.
Retrospective design based on a previous population cohort study with 789 adults who were identified with the surprise question and NECPAL tool from primary and intermediate care centres, nursing homes and one acute hospital of Spain. A Cox regression model was used to derive a mortality predictive model based on patients’ age and six previously selected NECPAL prognostic factors (palliative care need identified by healthcare professionals, functional decline, nutritional decline, multimorbidity, use of resources, disease-specific criteria of severity/progression). Patients were split into derivation/validation cohorts, and four steps were followed: descriptive analysis, predictors’ assessment, model estimation and model assessment.
All predictive variables were independently associated with increased risk of mortality at 24 months. Performance model including age was good; discrimination power by area under the curve (AUC) was 0.72/0.67 in the derivation/validation cohorts, and correlation between expected and observed (E/O) mortality ratio was 0.74/0.70. The model showed similar performance across settings (AUC 0.65–0.74, E/O 1.00–1.01), the best performance in oncological patients (AUC 0.78, E/O 0.76) and the worst in dementia patients (AUC 0.58, E/O 0.85). Based on the number of factors affected, three prognostic stages with significant differences and a median survival of 38, 17.2 and 3.6 months (p<0.001) were defined.
The NECPAL prognostic tool is accurate and eventually useful at the clinical practice. Stratification in risk groups may enable early intervention and enhance policy-making and service planning.
People who are nearing the end of life are high users of healthcare. The cost to providers is high and the value of care is uncertain.
To describe the pattern, trajectory and drivers of secondary care use and cost by people in Scotland in their last year of life.
Retrospective whole-population secondary care administrative data linkage study of Scottish decedents of 60 years and over between 2012 and 2017 (N=274 048).
Secondary care use was high in the last year of life with a sharp rise in inpatient admissions in the last 3 months. The mean cost was £10 000. Cause of death was associated with differing patterns of healthcare use: dying of cancer was preceded by the greatest number of hospital admissions and dementia the least. Greater age was associated with lower admission rates and cost. There was higher resource use in the urban areas. No difference was observed by deprivation.
Hospitalisation near the end of life was least frequent for older people and those living rurally, although length of stay for both groups, when they were admitted, was longer. Research is required to understand if variation in hospitalisation is due to variation in the quantity or quality of end-of-life care available, varying community support, patient preferences or an inevitable consequence of disease-specific needs.
To examine hospices’ approaches to improving the current racial/ethnic hospice utilisation disparity.
During June and July 2020, we conducted in-depth, semistructured interviews with 22 hospice leaders from across the USA. The interviews focused on inclusive strategy approaches. We analysed the data using qualitative methods.
Multiple themes emerged about racial/ethnic minority inclusion strategies: (1) hospices tailor strategies to the local communities they serve; (2) improvement involves addressing social determinants of health that extend beyond end-of-life care; (3) costs of strategies are not a primary concern and the benefits are worth the costs; and (4) hospices want to do more to improve their efforts.
Hospices want to improve racial/ethnic minority inclusion and can take specific action steps to educate community members about hospice and provide an environment within hospice care that is welcoming to all. Hospice-targeted programmes and policies that facilitate language translation, diversity in staffing, enhanced community outreach, and leadership and staff collaboration regarding inclusion may help hospices achieve success in their efforts toward racial/ethnic minority inclusion.
To understand the unique ethical and professional challenges confronting first and second year doctors in caring for people who are dying, and to learn what factors help or hinder them in managing these.
6 first year and 7 second year doctors were interviewed one-to-one by a senior palliative medicine physician (SD), quarterly over 12 months, using a semistructured approach. Thematic analysis was conducted with the findings, following the general inductive approach.
21 hours of recorded interviews were analysed by SD, and ethical and professional issues were identified. These were discussed with SW, and sorted into seven broad categories. The participants’ accounts of the issues convey a strong ethical sensitivity, developed through their undergraduate training. A recurring challenge for them through their first 12–24 months of work as doctors is being responsible for the decisions, knowing that what they do can have life and death consequences. The participants frequently describe senior doctors as an important source of support, and the lack of such support as leading to moral distress and demoralisation. Another important factor is having opportunity to discuss and reflect on the decisions after they are made. Where such reflection had been facilitated properly, participants displayed considerable growth in their ability to manage ethical challenges.
Senior support and opportunities for reflection need to be recognised as key factors in enabling first and second year to respond appropriately to ethical challenges in end-of-life care, and in sustaining their well-being through this critical stage of their professional life.
Despite the acknowledged benefits of research, Palliative Medicine receives minimal research funding and has few dedicated research training posts. This study investigated the opportunities and barriers to participating in research for the current cohort of UK Palliative Medicine Specialist Trainees (PMSTs), to better understand the opportunities to improve evidence-based practice within the specialty.
Two surveys, one for PMSTs and a second for training programme directors (TPDs), were developed. Surveys were piloted and then reviewed by the UK Palliative trainee Research Collaborative and the Palliative Medicine Specialty Advisory Committee (SAC) before distribution. All current PMSTs and TPDs representing all of the UK training regions (n=13) were invited to complete the appropriate survey.
Overall, 85% (11/13) and 45% (102/225) of TPDs and PMSTs responded, respectively. Almost all (92%) PMSTs reported that they were either ‘very interested’ or ‘quite interested’ in taking part in clinical research. PMSTs generally felt that educationaland clinical supervisors were supportive of them taking part in research; however, few (35%) believed they had access to personnel with adequate research experience to provide practical support. Opportunity for appropriate research supervision varied considerably by training region. Where research was being conducted, it was often conducted in trainees’ personal time due to the wide regional variation in dedicated research time.
Despite significant interest in clinical research and support by TPDs and clinical supervisors, access to experienced researchers and equitable protected research time by region needs urgent attention to enhance progress in evidence-based palliative medicine.
Paediatric patients with leukaemia with relapse or induction failure have poor prognosis. Anticipated quality of life (QoL) is important in treatment decision making. The objective was to determine if curative intent at relapse or induction failure, when compared with palliative intent, was associated with child’s physical health, pain or general fatigue and parents’ QoL over time among patients with paediatric leukaemia in El Salvador.
This was a prospective observational cohort study. Children 2–18 years with acute leukaemia at first relapse or induction failure were eligible. Assessments occurred every 2 months for up to 2 years using validated proxy report and self-report scales, where guardians were the primary respondents. Initial curative or palliative intent was categorised at enrolment by physicians. The impact of initial intent on QoL was assessed using linear mixed effects models and interaction between QoL and time.
Of the 60 families enrolled, initial treatment intent was curative in 31 (51.7%) and palliative in 29 (48.3%). During the 2-year observation period, 44 children died. Initial curative intent significantly improved child’s physical health (estimate=8.4, 95% CI 5.1 to 11.6), pain (estimate=5.4, 95% CI 1.5 to 9.2) and fatigue (estimate=6.6, 95% CI 3.2 to 9.9) compared with palliative intent, but not parents’ QoL (estimate=1.0, 95% CI –0.8 to 2.8).
Among paediatric patients with acute leukaemia at relapse or induction failure, initial curative intent treatment plan was associated with better physical health, pain and fatigue when compared with palliative intent. A curative approach may be a reasonable option for patients with acute leukaemia even when prognosis is poor.
Chemotherapy causes changes in appearance in patients with cancer. Therefore, to have a normal life, it is necessary for patients to wear a wig. However, wearing a wig may strain an already sensitive scalp during chemotherapy. This study aimed to assess the effects of a hypoallergenic medical wig in breast cancer patients with chemotherapy-induced alopecia (CIA).
A randomised, single-blind, controlled study was conducted from January 2015 to July 2017 in Tokyo, Japan. Women with non-metastatic breast cancers were enrolled. Participants were provided a hypoallergenic medical wig or a traditional medical wig. The primary endpoint was incidence of scalp dermatitis, including erythema, rash and erosion. The secondary endpoints were incidence of scalp symptoms, alterations in scalp barrier functions and quality of life (QOL). Patients were followed at the start of the first chemotherapy administration and at 13th week.
Fifty-nine women were included in the analysis. At 13th week, the incidence of erythema was 44.8% among patients in the intervention group and 86.7% among patients in the control group, in the intention-to-treat analysis (p<0.01). The incidence of erosion tended to decrease in the intervention group at the 13th week (p=0.09). The incidence of scalp symptoms, alterations in scalp barrier functions and QOL were not significantly different between the groups.
The incidence of dermatitis, including erythema, rash and erosion, decreased when wearing the new hypoallergenic medical wig. The gentle hypoallergenic medical wig is useful in improving erythema in cancer patients with CIA.
Trial registration number UMIN000021289.
Evidence for the positive impact of the early integration of palliative care (EPC) continues to grow. Less is known about how EPC improves patient and family outcomes, including the content of EPC consultations. Therefore, we aimed to better understand the content of EPC consultations including areas addressed, percentage covered per area and interaction style.
As part of a trial in which EPC in addition to oncology care was compared with oncology care alone, we audio recorded 10 interventions. The palliative care team led the interventions using SENS, a conversation structure, which stands for: Symptoms, End-of-life decision-making, Network and Support. We employed two approaches to analysis: the Roter interaction analysis system (RIAS) to analyse interaction dynamics and SENS as a framework for content analysis.
Physician–patient communication covered 91% of the interaction. According to RIAS, the consultations were evenly dominated between physicians and patients (ratio=1.04) and highly patient-centred (ratio=1.26). Content wise, rapport was the largest category covering 27% of the consultation, followed by decision-making (21%) and by symptom assessment/management (17%) including 8.1% for physical symptoms and 5.4% for psychosocial aspects. Network discussions covered 17%, and lastly, support for the family 7%.
EPC consultations cover a variety of end-of-life topics while putting a high value in establishing rapport, developing a relationship with patients, and on providing reassurance and positive emotional talk. EPC consultations using predefined structures may guarantee that a minimum of important aspects are addressed in a way in which the relationship with the patient remains at the centre.
To explore differences in end-of-life healthcare utilisation and medication costs between patients with haematological malignancies and patients with solid tumours.
Data on deceased patients with cancer were selected from the sample cohort data of health insurance claims from 2008 to 2015 in South Korea. They were categorised into two groups: patients with haematological malignancies and patients with solid tumours. Longitudinal data comprised the patient-month unit and aggregated healthcare utilisation and medication cost for 1 year before death. Healthcare utilisation included emergency room visits, hospitalisation and blood transfusions. Medication costs were subdivided into anticancer drugs, antibiotics, opioids, sedatives and blood preparation. Generalised linear mixed models were used to evaluate differences between the two groups and time trends.
Of the 8719 deceased patients with cancer, 349 died from haematological malignancies. Compared with solid tumours, patients with haematological malignancies were more likely to visit the emergency room (OR=1.36, 95% CI 1.10 to 1.69) and receive blood transfusions (OR=5.44, 95% CI 4.29 to 6.90). The length of hospitalisation of patients was significantly different (difference=2.49 days, 95% CI 1.75 to 3.22). Medication costs, except for anticancer treatment, increased as death approached. The costs of antibiotics and blood preparations were higher in patients with haematological malignancies than in those with solid tumours: 3.24 (95% CI 2.14 to 4.90) and 4.10 (95% CI 2.77 to 6.09) times higher, respectively.
Patients with haematological malignancies are at a higher risk for aggressive care and economic burden at the end of life compared with those with solid tumours. Detailed attention is required when developing care plans for end-of-life care of haematological patients.
This study aimed to describe and compare symptoms, care needs and types of diagnoses in hospitalised patients with palliative care needs in Spain and Sweden.
A cross-sectional, population-based study was carried out at two hospitals in both Spain and Sweden. Using a questionnaire, we performed 154 one-day inventories (n=4213) in Spain and 139 in Sweden (n=3356) to register symptoms, care needs and diagnoses. Descriptive analyses were used.
The proportion of patients with care needs in the two countries differed (Spain 7.7% vs Sweden 12.4%, p<0.001); however, the percentage of patients with cancer and non-cancer patients was similar. The most prevalent symptoms in cancer and non-cancer patients in both countries were deterioration, pain, fatigue and infection. The most common cancer diagnosis in both countries was lung cancer, although it was more common in Spain (p<0.01), whereas prostate cancer was more common among Swedish men (p<0.001). Congestive heart failure (p<0.001) was a predominant non-cancer diagnosis in Sweden, whereas in Spain, the most frequent diagnosis was dementia (p<0.001). Chronic obstructive pulmonary disease was common in both countries, although its frequency was higher in Spain (p<0.05). In total, patients with cancer had higher frequencies of pain (p<0.001) and nausea (p<0.001), whereas non-cancer patients had higher frequencies of deterioration (p<0.001) and infections (p<0.01).
The similarities in symptoms among the patients indicate that the main focus in care should be on patient care needs rather than diagnoses. Integrating palliative care in hospitals and increasing healthcare professional competency can result in providing optimal palliative care.
Previous studies have found an association between aggressive cancer care and lower quality end of life. Despite international recommendations, late or very late referral to palliative care seems frequent. This study aimed to evaluate the association between the duration of involvement of a palliative care team (PCT), and aggressive cancer care, and to identify factors associated with aggressive cancer care.
We performed an observational retrospective study in a single academic teaching hospital. In total, 561 inpatients with solid tumours or haematological malignancies were included. Patients followed by a PCT for at least 1 month before death were classified in the palliative care group. Aggressive cancer care was defined as: hospitalisations and/or a new line of chemotherapy within the last month of life, location of death, the use of chemotherapy in the last 2 weeks and hospice admissions within the last 3 days of life.
Among the 561 patients, 241 (43%) were referred to the PCT; 89 (16%) were followed by the PCT for a month or more before death. In the last 2 weeks of life, 124 (22%) patients received chemotherapy, 110 (20%) died in an acute care unit. At least one criterion of aggressive cancer care was found in 395 patients overall (71%). Aggressive cancer care was significantly less frequent when the PCT referral occurred >1 month before death (p<0.0001).
More studies are needed to understand reasons for late referrals despite international recommendations encouraging integrative palliative care.
The study was approved by the Grenoble Teaching Hospital ethics committee, and by the CNIL (French national commission for data privacy; Commission Nationale de l’Informatique et des Libertés) under the number 1987785 v 0. Due to ethical and legal restrictions, data are only available on request.
Pastoral care in an acute hospital setting necessarily includes some bereavement support for families of patients who die. Termed universal bereavement support, an important component of such support is provision of educational information to assist bereaved people struggling with grief. This project aimed to understand, from the perspective of those attending, the value of providing a memorial service for remembering a loved one and whether the education provided at the service successfully met the requirement of a universal bereavement support strategy.
A qualitative study, comprising a semistructured telephone interview with memorial service attendees was undertaken. Data were audio recorded, transcribed and analysed thematically.
Twenty-nine attendees participated. Three themes provided insights into attendees’ perceptions. The first theme encapsulated the value of remembering and celebrating the life of the deceased; the second theme focused on ‘finding our way through the grief process’ including the value of the educational materials ; and the third theme identified appreciation for the hospital in providing care to those bereaved.
The memorial service provides a valued universal bereavement support strategy and such support strategies are an important part in the process of grieving for many attendees.
Individuals who accompany a loved one through medical assistance in dying (MAiD) have to live with the experience and the psychological, moral and social consequences of their involvement in the process long after the death occurs.
To explore the legacy of a MAiD death for individuals who accompanied a loved one through the process.
Using a qualitative descriptive approach we conducted semi-structured interviews to collect data from family members who had accompanied a loved one through MAiD. Data were analysed using conventional content analysis.
16 family members of 14 patients who received MAiD at a Canadian hospital with an interdisciplinary MAiD programme.
The main theme in the analysis is the opposing tensions experienced by individuals who accompany a loved one through a MAiD death, which we conceptualise as a double-edge experience. This double-edge experience is illustrated through four thematic opposing tensions: (1) support for patient autonomy and ambivalence about the MAiD choice, (2) gratitude for suffering relieved for loved one and grief for lost time with loved one, (3) time as a gift and time as a burden and (4) positive legacy and challenging bereavement experience.
The nature of the MAiD experience for involved families is rooted in complexity, ambiguity and ambivalence and thus resists easy categorisation. Families would benefit from structured psychosocial and spiritual supports that acknowledge this complexity, along with MAiD-specific bereavement support following the death.
Although systemic chemotherapy is often administered to patients with malignant bowel obstruction (MBO), its benefit remains unknown. This study assessed the outcomes of patients who received systemic chemotherapy as part of MBO treatment.
For this retrospective cohort study, data were extracted from records of patients hospitalised due to MBO in a tertiary cancer centre from 2008 to 2020. Eligible patients were not candidates for surgery and received systemic chemotherapy targeting the underlying malignancy causing MBO. Primary objective was to assess patient outcomes after chemotherapy; secondary objectives were rates of intestinal function recovery, hospital discharge and grade ≥3 toxicities. The primary endpoint was overall survival (OS).
A total of 167 patients were included: median age was 55 (18–81) years, 91% had an Eastern Cooperative Oncology Group (ECOG) performance status ≥2, 75.5% had gastrointestinal tumours and 70% were treatment-naive. The median OS after chemotherapy was 4.4 weeks (95% CI 3.4 to 5.5) in the overall population. No OS difference was observed according to treatment line (p=0.24) or primary tumour (p=0.13). Intestinal function recovery occurred in 87 patients (52%), out of whom 21 (24.1%) had a reobstruction. Hospital discharge was possible in 74 patients (44.3%). Grade≥3 adverse events occurred in 26.9% of the patients, and a total of 12 deaths (7%) attributed to toxicities were observed after chemotherapy.
MBO was associated with a dismal prognosis in this mostly treatment-naive population. The administration of chemotherapy yielded a significant risk of toxicities, whereas it did not appear to provide any relevant survival benefit in this scenario.
Burnout occurs commonly in palliative care. Building resilience helps to mitigate the effects of burnout. Little is known about the importance of leaders, teams and organisations in preventing burnout and promoting resilience in palliative care.
We studied palliative care clinicians with more than a decade’s experience looking into their experiences on the role leaders, teams and organisations play in burnout and resilience.
This is a thematic analysis focusing on how leaders, teams and organisations influence burnout and resilience. 18 palliative care clinicians—5 doctors, 10 nurses and 3 social workers—who worked in various palliative care settings (hospital, home hospice and inpatient hospice) were interviewed using semistructured questionnaires. The mean age of the interviewees was 52 years old, and the mean number of years practising palliative care was 15.7 years (ranging from 10 to 25 years). The interviews were recorded verbatim and were transcribed and analysed using a thematic analysis approach.
The following themes featured prominently in our study. For leaders: being supportive, caring and compassionate, being a good communicator and showing protective leadership. With teams: being like-minded, caring for the team, sharing the burden and growing together. For organisations: having a strong commitment to palliative care, supporting staff welfare and development, open communication, adequate staffing and organisational activities promoting staff well-being were described as protective against burnout and promoting resilience.
Leaders, teams and organisations play an important role in helping palliative care teams to reduce burnout and promote resilience.
Providing end-of-life care has a significant psychological impact on critical care nurses. Little is known about whether critical care nurses find death rounds useful as a support system. This study aimed to describe critical care nurses’ perceptions of attending death rounds.
This study was conducted using a qualitative descriptive design, using one-to-one audio-recorded interviews. The study was conducted at a 20-bed medical intensive care unit in a 1200-bed public tertiary hospital in Singapore. One-to-one interviews were conducted with 14 nurses using a semi-structured interview guide. Data was analysed using thematic analysis.
Critical care nurses valued attending death rounds. They found death rounds to be an outlet to express themselves and remember patients, to draw and give peer support, to build nursing and interprofessional cohesiveness and to learn to improve palliative care. The death rounds were optimal when they felt safe to share, when there was a good facilitator, when the hierarchy was flat and when the audience was interdisciplinary. The barriers to a successful death round were the rounds being too formal, timing and not knowing the patients.
Death rounds are a viable way to support critical care nurses in providing end-of-life care.
The unprecedented scale of contemporary migration across countries over the last decade means that ageing and dying occur in a more globalised, multicultural context. It is therefore essential to explore the end-of-life experiences of older people from migrant backgrounds.
A scoping review of peer-reviewed articles published in English from 2008 to 2018. Included studies addressed end-of-life preferences, attitudes, values and beliefs of first-generation international migrants who were at least 50 years of age.
Fifteen studies met the inclusion criteria for this review, which addressed six key themes: (1) the reluctance among older migrants and their families to talk about death and dying; (2) difficult communication in patient-clinician relationships; (3) the contrast between collectivistic and individualistic norms and its associated end-of-life preferences; (4) limited health literacy in older adults from migrant backgrounds; (5) experiences with systemic barriers like time pressure, inflexibility of service provision and lack of cultural sensitivity and (6) the need for care providers to appreciate migrants’ ‘double home experience’ and what this means for end-of-life decision-making regarding place of care and place of death.
To respond effectively to an increasingly culturally diverse population, healthcare staff, researchers and policymakers need to invest in the provision of culturally sensitive end-of-life care. Areas for improvement include: (a) increased awareness of cultural needs and the role of family members; (b) cultural training for healthcare staff; (c) access to interpreters and translated information and (d) involvement of older migrants in end-of-life discussions, research and policymaking.
To analyse healthcare utilisation and costs in the last year of life in England, and to study variation by cause of death, region of patient residence and socioeconomic status.
This is a retrospective cohort study. Individuals aged 60 years and over (N=108 510) who died in England between 2010 and 2017 were included in the study.
Healthcare utilisation and costs in the last year of life increased with proximity to death, particularly in the last month of life. The mean total costs were higher among males (£8089) compared with females (£6898) and declined with age at death (£9164 at age 60–69 to £5228 at age 90+) with inpatient care accounting for over 60% of total costs. Costs decline with age at death (0.92, 95% CI 0.88 to 0.95, p<0.0001 for age group 90+ compared with to the reference category age group 60–69) and were lower among females (0.91, 95% CI 0.90 to 0.92, p<0.0001 compared with males). Costs were higher (1.09, 95% CI 1.01 to 1.14, p<0.0001) in London compared with other regions.
Healthcare utilisation and costs in the last year of life increase with proximity to death, particularly in the last month of life. Finer geographical data and information on healthcare supply would allow further investigating whether people receiving more planned care by primary care and or specialist palliative care towards the end of life require less acute care.
To examine antibiotic use in patients approaching end of life, in terms of frequency of prescription, aim of treatment, beneficial and adverse effects and contribution to the development of antimicrobial resistance.
Scoping review
An information scientist searched Ovid MEDLINE, Ovid EMBASE, The Cochrane library, PubMed Clinical Queries, NHS Evidence, Epistemonikos, SIGN, NICE, Google Scholar from inception to February 2019 for any study design including, but not limited to, randomised clinical trials, prospective interventional or observational studies, retrospective studies and qualitative studies. The search of Ovid MEDLINE was updated on the 10 June 2020.
Studies reporting antibiotic use in patients approaching end of life in any setting and clinicians’ attitudes and behaviour in relation to antibiotic prescribing in this population
Two reviewers screened studies for eligibility; two reviewers extracted data from included studies. Data were analysed to describe antibiotic prescribing patterns across different patient populations, the benefits and adverse effects (for individual patients and wider society), the rationale for decision making and clinicians behaviours and attitudes to treatment with antibiotics in this patient group.
Eighty-eight studies were included. Definition of the end of life is highly variable as is use of antibiotics in patients approaching end of life. Prescribing decisions are influenced by patient age, primary diagnosis, care setting and therapy goals, although patients’ preferences are not always documented or adhered to. Urinary and lower respiratory tract infections are the most commonly reported indications with outcomes in terms of symptom control and survival variably reported. Small numbers of studies reported on adverse events and antimicrobial resistance. Clinicians sometimes feel uncomfortable discussing antibiotic treatment at end of life and would benefit from guidelines to direct care.
Use of antibiotics in patients approaching the end of life is common although there is significant variation in practice. There are a myriad of intertwined biological, ethical, social, medicolegal and clinical issues associated with the topic.
Healthcare professionals (HCPs) experience difficulties in timely recognising and directing palliative care (PC) needs of their patients with chronic heart failure (CHF). The aim of this study was to develop a comprehensive tool to enable HCPs in timely recognising and directing PC needs in CHF.
A four-stage mixed-method study was performed. Stage 1: identification of needs and questions of patients and families; stage 2: prioritisation and refinement of the needs and questions; stage 3a: testing and online feedback on V.1; stage 3b: selecting and refining care recommendations; stage 4: testing and review of V.2. Iterative reviews followed each step in the development process to ensure a wide range of stakeholder input. In total, 16 patients, 12 family members and 54 HCPs participated.
A comprehensive set of 13 PC needs was identified, redefined and tested. The resulting tool, called Identification of patients with HeARt failure with PC needs (I-HARP), contains an introduction prompt with open questions to start the conversation, 13 closed screening questions with additional in-depth questions, and recommendations on actions for identified needs.
I-HARP contains an evidence-based set of questions and palliative CHF care suggestions for HCPs in the Netherlands. The resulting tool, approved by HCPs, patients and family members, is a promising guidance for HCP to timely recognise and direct PC needs in CHF.
Palliative care strives to improve quality of life for patients with incurable diseases. This approach includes adequate support of the patients’ loved ones. Consequently, loved ones have personal experiences of providing end-of-life care for their next. This is a resource for information and may help to investigate the loved ones’ perspectives on need for improvements.
To identify further quality aspects considered important by loved ones to improve the quality of care at the end of life as an addition to quantitative results from the Care of the Dying Evaluation for the German-speaking area (CODE-GER) questionnaire.
Within the validation study of the questionnaire ‘Care of the Dying Evaluation’ (CODETM) GER, loved ones were asked to comment (free text) in parallel on each item of the CODE-GER. These free-text notes were analysed with the qualitative content analysis method by Philipp Mayring.
Loved ones of patients (n=237), who had died an expected death in two university hospitals (palliative and non-palliative care units) during the period from April 2016 to March 2017.
993 relevant paragraphs were extracted out of 1261 free-text notes. For loved ones, important aspects of quality of care are information/communication, respect of the patient’s and/or loved one’s will, involvement in decision-making at the end of life (patient’s volition) and having the possibility to say goodbye.
It is important for loved ones to be taken seriously in their sorrows, to be informed, that the caregivers respect the patients’ will and to be emotionally supported.
This study was registered at the German Clinical Trials Register (DRKS00013916).
The aim of this work is to describe the multidisciplinary model of intervention applied and the characteristics of some COVID-19 patients assisted by the hospital palliative care unit (UCP-H) of an Italian hospital in Lombardy, the Italian region most affected by the COVID-19 pandemic.
A retrospective study was conducted on patients admitted to the A. Manzoni Hospital (Lecco, Lombardy Region, Italy) and referred to the UCP-H between 11 March 2020 and 18 April 2020, the period of maximum spread of COVID-19 in this area. Data were collected on the type of hospitalisation, triage process, modality of palliative care and psychological support provided.
146 COVID-10 patients were referred to the UCP-H. Of these, 120 died during the observation time (82%) while 15 (10.2%) improved and were discharged from the UCP-H care. 93 had less favourable characteristics (rapid deterioration of respiratory function, old age, multiple comorbidities) and an intensive clinical approach was considered contraindicated, while 48 patients had more favourable presentations. Mean follow-up was 4.8 days. A mean of 4.3 assessments per patient were performed. As to respiratory support, 94 patients were treated with oxygen only (at different volumes) and 45 with Continuous Positive Airway Pressure (CPAP).
The ongoing pandemic highlighted the need for dedicated palliative care teams and units for dying patients. This work highlights how palliative medicine specialist can make a fundamental contribution thanks to their ability and work experience in an organised multiprofessional context.
International organisations recommend the inclusion of palliative care undergraduate education as a way to meet increasing demand; the long-term effects, however, are unknown. Since 2013 the Dr José Matías Delgado University has offered an undergraduate course for palliative care.
To assess whether a palliative care course results in improvement in self-perceived comfort among students and if it lasts up to 4 years later; and to examine students’ knowledge of palliative care and assess the relationship between comfort and knowledge.
This is a prospective cohort study where students attending the course were requested to complete the Scale of Self-Perceived Comfort in palliative care pre and post course. Participants were contacted in 2018 and a group without palliative care education was established as a control group, matched one-to-one according to current academic level. They were asked to complete the Scale of Self-Perceived Comfort questionnaire together with the Palliative Care Knowledge Test.
83 students who attended the course between the years 2014 and 2017 and 101 controls.
In the postcourse test, participants had a 1.13-point increase (p≤0.001) in comfort, which persisted 4 years later and was superior to the control group by 0.6 points (p≤0.001). The control group showed no difference in the precourse test despite having more clinical experience (p=0.68). The students outscored the control group in the knowledge test by 4.2 points (p≤0.001). There appears to be no correlation between comfort and knowledge.
A palliative care undergraduate course results in improvement in student comfort and knowledge which persists up to 4 years later.
The Carer Support Needs Assessment Tool intervention (CSNAT-I) has been shown to improve end-of-life care support for informal caregivers. This study investigated the impact of the CSNAT-I on caregivers of patients recently enrolled in specialised palliative care (SPC) at home in Denmark.
A stepped-wedge cluster randomised controlled trial with nine clusters (ie, SPC teams). Outcome measures were collected using caregiver questionnaires at baseline (T0) and 2-week (T1) and 4-week (T2) follow-up.
A total of 437 caregivers were enrolled (control group, n=255; intervention group, n=182). No intervention effect was found on the primary outcome, caregiver strain at T1 (p=0.1865). However, positive effects were found at T1 and T2 on attention to caregivers’ well-being (p<0.0001), quality of information and communication (p<0.0001), amount of information (T1: p=0.0002; T2: p<0.0001), involvement (T1: p=0.0045; T2: p<0.0001), talking about greatest burdens (p<0.0001) and assistance in managing greatest burdens (p<0.0001). The effect sizes of these differences were medium or large and seemed to increase from T1 to T2. At T1, positive effects were found on distress (p=0.0178) and home care responsibility (p=0.0024). No effect was found on the remaining outcomes.
Although no effect was found on caregiver strain, the CSNAT-I showed positive effects on caregiver distress, home care responsibility and key outcomes regarding caregivers’ experience of the interaction with healthcare professionals.
Randomised controlled trials (RCTs) of palliative care interventions are challenging to conduct and evaluate. Tools used to judge the quality of RCTs do not account for the complexities of conducting research in seriously ill populations and may artificially downgrade confidence in palliative care research.
To compare assessments from the Palliative Care Trial Assessment Tool (PCTAT) and Cochrane Risk of Bias (RoB) tool.
Reviewers assessed 43 RCTs using PCTAT and RoB. We compared assessments of each trial, assessed overall agreement (weighted kappa (Kw)) and examined (dis)agreement for comparable items. We assessed quality of life at 1–3 months among trials grouped according to RoB or PCTAT score (using meta-analysis) and whether RoB or quality improved over time (Cochran-Armitage trend test).
Of 43 trials, those rated low RoB had a mean PCTAT score of 73 (SD 10); those rated high RoB had a mean PCTAT score of 56 (SD 14). Overall Kw was 0.33 (95% CI 0.19 to 0.42). Total agreement between comparable items was observed for 56% of trials (24/43) and total disagreement for 21% (8/43). The standardised mean difference in quality of life was statistically significant among RCTs with low RoB and high PCTAT, but not for those with medium/low PCTAT or high/unclear RoB. Quality of reporting improved over time, whereas RoB did not.
Although there was fair agreement between tools, areas of disagreement/non-comparability suggest the tools capture different aspects of bias/quality. A specific tool to evaluate quality of palliative care trials may be warranted.
Although the challenges of integrating palliative care practices across care settings are real and well recognised, to date little is known about palliative care practices of emergency physicians (EPs) in Kuwait. Therefore, this study aims to explore the attitude and knowledge of EPs in providing palliative care in all general hospitals in Kuwait.
A cross-sectional survey was performed in the emergency rooms of all general hospitals in Kuwait using the Palliative Care Attitude and Knowledge Questionnaire.
Of the total number of physicians working in emergency rooms (n=156), 104 (66.67%) had completed the survey. 76.9% (n=80) of the EPs had an uncertain attitude towards palliative care. Most of the EPs (n=73, 70.28%) did not discuss the patients’ need for palliative care either with the patients or with their families. Only 16 (15.4%) of the EPs responded correctly to most of the questions while nearly half of the EPs (n=51, 49%) had poor knowledge. Experience ≥11 years and better knowledge scores were independent predictors of positive attitude after adjustment of age, sex, qualifications, specialty, position and nationality (OR: 5.747 (CI 1.031 to 25.00), 1.458(CI 1.148 to 1.851); p values: 0.021, 0.002, respectively).
Despite recognising palliative care as an important competence, the majority of the EPs in Kuwait had uncertain attitude and poor knowledge towards palliative care. Efforts should be made to enhance physician training and provide palliative care resources to improve the quality of care given to patients visiting emergency departments.
Antitumour treatment in the last 2 weeks of death (ATT-W2) and a new regimen of ATT within 30 days of death (NATT-M1) are considered as aggressive end-of-life (EOL) care. We aimed to assess factors associated with inappropriate use of antitumour treatment (ATT) at EOL.
Data of patients with cancer who died in 2013, 2015, 2017 and 2019 in a single for-profit cancer centre were retrospectively analysed. ATT was divided into chemotherapy (CT), oral targeted therapy (OTT), hormonotherapy and immunotherapy (IMT).
A total of 1282 patients were included. NATT-M1 was given to 197 (15.37%) patients, and 167 (13.03%) had an ATT-W2. Patients with a performance status of <2 and treated with CT had more both ATT- W2 (OR=2.45, 95% CI 1.65 to 3.65, and OR=10.29, 95% CI 4.70 to 22.6, respectively) and NATT-M1 (OR=2.01, 95% CI 1.40 to 2.90, and OR=8.41, 95% CI 4.46 to 15.86). Predictive factors of a higher rate of ATT-W2 were treatment with OTT (OR=19.08, 95% CI 7.12 to 51.07), follow-up by a medical oncologist (OR=1.49, 95% CI 1.03 to 2.17), miscellaneous cancer (OR=3.50, 95% CI 1.13 to 10.85) and length of hospital stay before death of <13 days (OR=1.92, 95% CI 1.32 to 2.79). Urinary tract and male genital cancers received less ATT-W2 (OR=0.38, 95% CI 0.16 to 0.89, and OR=0.40, 95% CI 0.16 to 0.99) and patients treated by IMT or with age <69 years more NATT-M1 (OR=19.21, 95% CI 7.55 to 48.8, and OR=1.69, 95% CI 1.20 to 2.37). Patients followed up by the palliative care team (PCT) had fewer ATT-W2 and NATT-M1 (OR=0.49, 95% CI 0.35 to 0.71, and OR=0.42, 95% CI 0.30 to 0.58).
Most recent ATT and access to a PCT follow-up are the two most important potentially modifiable factors associated with aggressive EOL in patients with cancer. Early integrated palliative oncology care could help to decrease futile ATT at EOL.
Identification of people with deteriorating health is essential for quality patient-centred care and optimal management. The Supportive and Palliative Care Indicators Tool (SPICT) is a guide to identifying people with deteriorating health for care planning without incorporating a prognostic time frame.
To improve renal nursing staff confidence in identifying patients approaching end-of-life and advocate for appropriate multidisciplinary care planning.
This pilot feasibility prospective cohort study conducted in the renal ward of a major metropolitan health service during 2019 included a preintervention/postintervention survey questionnaire. A programme of education was implemented training staff to recognise end-of-life and facilitate appropriate care planning.
Several domains in the postintervention survey demonstrated a statistically significant improvement in renal nurses’ perception of confidence in their ability to recognise end of life. Of the 210 patients admitted during the study period, 16% were recognised as SPICT positive triggering renal physicians to initiate discussions about end-of-life care planning with patients and their families and to document a plan. Six months poststudy, 72% of those patients recognised as SPICT positive had died with a documented plan of care in place.
The use of SPICT for hospital admissions and the application of education in topics related to end-of-life care resulted in a significant improvement in nurses’ confidence in recognising deteriorating and frail patients approaching their end of life. The use of this tool also increased the number of deteriorating patients approaching end of life with goals of care documented.
To identify actions required to strengthen the delivery of person and family centred hospital-based palliative care so that it addressed the domains of care identified as important for inpatients with palliative care needs and their families.
A codesign study involving a workshop with palliative care and acute hospital policy, consumer and clinical representatives in Australia. A modified nominal group process generated a series of actions, which were thematically analysed and refined, before being circulated to participants to gain consensus.
More than half (n=30, 58%) of the invited representatives (n=52) participated in the codesign process. Nine actions were identified as required to strengthen inpatient palliative care provision being: (a) evidence-informed practice and national benchmarking; (b) funding reforms; (c) securing executive level support; (d) mandatory clinical and ancillary education; (e) fostering greater community awareness; (f) policy reviews of care of the dying; (g) better integration of advance care planning; (h) strengthen nursing leadership; and (i) develop communities of practice for improving palliative care.
Changes to policy, practice, education and further research are required to optimise palliative care within hospital settings, in accordance with the domains inpatients with palliative care needs and their families consider to be important. Achieving these changes will require a whole of sector approach and significant national and jurisdictional leadership.
Palliative care is an approach that improves the quality of life of patients and families facing challenges associated with life-threatening illness. In order to effectively deliver palliative care, patient and caregiver priorities need to be incorporated in advanced cancer care.
This study identified experiences of patients living with advanced colorectal cancer and their caregivers to inform the development of an early palliative care pathway.
Qualitative patient-oriented study.
Patients receiving care at two cancer centres were interviewed using semistructured telephone interviews to explore their experiences with cancer care services received prior to a new developed pathway. Interviews were transcribed verbatim, and the data were thematically analysed.
From our study, we identified gaps in advanced cancer care that would benefit from an early palliative approach to care. 15 patients and 7 caregivers from Edmonton and Calgary were interviewed over the phone. Participants identified the following gaps in advanced cancer care: poor communication of diagnosis, lack of communication between healthcare providers, role and involvement of the family physician, lack of understanding of palliative care and advance care planning.
Early palliative approaches to care should consider consistent and routine delivery of palliative care information, collaborations among different disciplines such as oncology, primary care and palliative care, and engagement of patients and family caregivers in the development of care pathways.
During the SARS-CoV-2 pandemic, a complete physical isolation has been worldwide introduced. The impossibility of visiting their loved ones during the hospital stay causes additional distress for families: in addition to the worries about clinical recovery, they may feel exclusion and powerlessness, anxiety, depression, mistrust in the care team and post-traumatic stress disorder. The impossibility of conducting the daily meetings with families poses a challenge for healthcare professionals.
This paper aims to delineate and share consensus statements in order to enable healthcare team to provide by telephone or video calls an optimal level of communication with patient’s relatives under circumstances of complete isolation.
PubMed, Cochrane Database of Systematic Reviews, Database of Abstracts and Reviews of Effectiveness and the AHCPR Clinical Guidelines and Evidence Reports were explored from 1999 to 2019. Exclusion criteria were: poor or absent relevance regarding the aim of the consensus statements, studies prior to 1999, non-English language. Since the present pandemic context is completely new, unexpected and unexplored, there are not randomised controlled trials regarding clinical communication in a setting of complete isolation. Thus, a multiprofessional taskforce of physicians, nurses, psychologists and legal experts, together with some family members and former intensive care unit patients was established by four Italian national scientific societies. Using an e-Delphi methodology, general and specific questions were posed, relevant topics were argumented, until arriving to delineate position statements and practical checklist, which were set and evaluated through an evidence-based consensus procedure.
Ten statements and two practical checklists for phone or video calls were drafted and evaluated; they are related to who, when, why and how family members must be given clinical information under circumstances of complete isolation.
The statements and the checklists offer a structured methodology in order to ensure a good-quality communication between healthcare team and family members even in isolation, confirming that time dedicated to communication has to be intended as a time of care.
To assess the impact after 20 years of a Master’s degree in palliative care (MsPC) on the participants’ educational outcomes in terms of educational needs satisfaction, motivation, applicability and professional development (PD) in the palliative care (PC) field.
A cross-sectional study was conducted between October 2016 and February 2017. Participants were students of the MsPC from 13 editions. An ad hoc survey comprising closed-end questions was provided. Variables such as sociodemographic and learning outcomes, based on Kirkpatrick’s model, were included.
Respondents were 76.6% women, and 60% were between 30 and 50 years of age. Over half of participants were physicians (57.4%), with >15 years of experience (52%). 77% (n=152) reported previous work experience (PWE) in PC, and 23% (n=45) had no PWE. After completing the MsPC, 49% of those without PWE were hired to work in a PC unit, while 84,2% with PWE continued work in a PC-related position. 51.6% professionals with PWE were currently working in other PC areas, such as training or research. High scores were observed on expectations, training needs, motivation in professional practice, PD, applicability and satisfaction, in both groups. Data have shown statistically significant differences on the perceived value of the MsPC to obtain work in the PC field (p=0.006).
This MsPC training programme improves educational outcomes, and promotes PD, regardless of PWE in PC. Interdisciplinary training for all professionals who care for PC individuals is required. To ensure the quality of education in PC programmes, a systematic process of continuous evaluation is needed.
National guidance recommends equality in access to bereavement services; despite this, awareness and availability appears inconsistent. The aim of this study was to explore availability and accessibility of bereavement services across the North-East of England and to highlight issues potentially applicable across the UK, at a time of unprecedented need due to the impact of COVID-19.
Phase 1: an eight item, web-based survey was produced. A survey link was cascaded to all GP practices (General Practitioners) in the region. Phase 2: an email was sent to all services identified in phase 1, requesting details such as referral criteria and waiting times.
All 392 GP practices in the region were invited to participate. The response rate was 22% (85/392). Twenty-one per cent (18/85) of respondents reported that they do not refer patients, comments included ‘not aware of any services locally’. A total of 36 services were contacted with 72% responding with further information. Most bereavement specific support was reliant on charity-funded services including hospices, this sometimes required a pre-existing link with the hospice. Waiting times were up to 4 months.
Although multiple different, usually charity-funded services were identified, awareness and accessibility were variable. This survey was conducted prior to the COVID-19 pandemic, where complex situations surrounding death is likely to impact on the usual grieving process and increase the need for bereavement support. Meanwhile, charities providing this support are under severe financial strain. There is an urgent need to bridge the gap between need and access to bereavement services.
Palliative care is an important aspect of gynaecological oncology practice. In order to successfully integrate end-of-life (EOL) care in the disease trajectory, it is crucial to incorporate systematic training in subspecialty programmes in gynaecological oncology. We aimed to evaluate the quality of training in palliative care across gynaecological oncology fellows in Europe and to provide a framework to facilitate learning opportunities.
A web-based questionnaire was sent to members of the European Network of Young Gynae-Oncologists (ENYGO). The survey consisted of 36 items covering six domains: respondents’ characteristics, quality and quantity of teaching, curriculum achievements, observation and feedback, EOL clinical practice and attitudes about palliative care.
Of the 703 clinicians enrolled in the study, 142 responded (20.2%). Although the majority worked in university hospitals, only half of them (47%) were in a formal subspecialty programme. The majority of respondents (60%) were trained without a mandatory rotation in palliative care units and considered the quality of EOL care teaching as ‘very poor’ or ‘poor’ (57.7%). The majority of respondents (71.6%) did not receive any supervision or feedback at the time of their first consultation on changing the goals of care.
Our study underlines lack of structured teaching and supervision in palliative care contents among European fellows in gynaecological oncology. Broad education of healthcare providers is a key factor to achieve the integration of palliative care in gynaecological oncology practice. Stakeholders like European Society of Gynaecological Oncology/ENYGO play an important role to facilitate educational activities and training programmes targeting to EOL care.
To understand reasons why adult cancer survivors do not seek assistance as they transition from the end of cancer treatment to follow-up care. Understanding these reasons should inform survivorship care, help reduce the burden of suffering and increase quality of life for survivors.
A national survey was conducted in collaboration with ten Canadian provinces to identify unmet needs and experiences with follow-up for cancer survivors between one and 3 years post-treatment. The survey included open-ended questions to allow respondents to add topics of importance and details that offered a deeper insight into their experiences. This publication presents the analysis of the quantitative data and open-ended responses regarding reasons why the adult cancer population does not seek help with their concerns.
In total, 13 319 respondents answered the question about seeking help. 87% had a physical concern of which 76% did not seek help; 77% had an emotional concern of which 82% did not seek help; and 45% had a practical concern of which 71% did not seek help. Frequently identified reasons for not seeking help included being told it was normal and not thinking anything could be done, not wanting to ask, not thinking services were available, handling it on their own and not thinking it was serious enough to seek help.
Survivors have multiple reasons for not seeking help for their concerns. These findings can be useful to healthcare providers in proactively identifying and addressing the needs of these survivors.
Catheter-related bloodstream infections (CRBSIs) constitute a major complication associated with the use of central venous lines (CVL). The aim of this study was to investigate the incidence proportion and risk factors of CRSBI in palliative care patients with CVL receiving home parenteral nutrition (HPN).
Medical records from patients admitted to a medical home care unit in stockholm, Sweden, during 2017 were reviewed (n=1022) and 454 palliative care patients with a CVL were identified. Data on CRBSI cases, HPN exposure time, type of parenteral nutrition (PN), age, diagnosis and type of CVL were collected.
Twenty-nine of 143 patients receiving HPN through a CVL were diagnosed with a CRBSI (20%). Nine of 311 patients with CVL without exposure for HPN developed CRBSI (3%). The risk of a CRBSI was significantly higher in patients receiving HPN compared with those not receiving HPN, OR 8.5 (95% CI 4.0 to 18.7). For those receiving HPN six to seven times a week the risk was even higher, OR 13 (95% CI 5.1 to 30.3). The highest incidence proportion of CRBSI (31%) was found in a home care team where patients had been trained to disconnect themselves from the PN drip. Sex, cancer versus non-cancer, type of CVL or protein content in the PN, did not differ between patients that developed CRBSI versus those that did not develop the outcome.
HPN entails a high risk of CRBSI. A high frequency of PN and incautious handling of the disconnection of the drip, seem to be the most important risk factors.
Patients receiving palliative care may benefit greatly when their existential or spiritual strengths are fostered. To date however, there has not been a comprehensive literature review of patient and care professional approaches that are available.
To describe and synthesise existential or spiritual strength-based approaches within the context of palliative care.
Literature search of 2436 articles between January 1999 and March 2019 in Scopus, Web of Science, CINAHL and PsycINFO. Articles were included if they deal with a palliative care situation, focus on the patient, specific existential/spiritual strength, discernible strength approach and an analysis of the workings of that approach. The interpretative synthesis consisted of a thematic analysis of the included articles and an integration of themes.
In the 14 included articles, 5 different strengths were found to be fostered by 16 approaches: (1) Meaning was fostered by: maintaining normalcy, experiencing sanctuaries, reassessing importance and reconstructing positive self; (2) Connection by: opening up, giving/receiving care and envisioning continuation; (3) Agency by: maintaining control, refocusing goals and continuous adaptation; (4) Hope through: setting special targets, imagining alternate outcomes, building a collection and extending wishes; (5) Faith through: living the tradition and relating to a benevolent force. Strengths and approaches are visualised in an overarching analytical framework: ‘the Propeller’.
The constructed Propeller framework can be used to become aware of, apply and further develop approaches to foster existential or spiritual strengths among patients receiving palliative care.
Neuroendocrine tumours (NETs) are neoplastic yet behave differently to typical cancers. Despite often being slow growing, they can lead to significant gastrointestinal complications including intestinal failure (IF). The use of home parenteral nutrition (HPN) in neoplastic conditions is rising, primarily for palliation and bridging through treatments for cancer, but remains a challenging decision with a paucity of high-grade evidence-based guidance.
A retrospective analysis of patients with NET on HPN was performed. Data collected included the cause of IF, complications encountered with HPN and changes in nutritional assessments.
Eight patients were identified, all with metastatic NET. Median weight improved following HPN commencement and line sepsis was the sole complication. All patients had stabilisation and optimisation of nutritional and hydration status.
HPN is commenced to improve or maintain patients’ nutritional status during often lifelong treatment. The principle aim in providing HPN was to improve survival and quality of life. While NETs are cancers, our case series demonstrates the potential of HPN to actively support longer term survival in the subgroup of patients who develop IF.
Patients with haematological malignancies (HM) receive more aggressive treatments near the end-of-life (EOL) than patients with solid tumours. Palliative care (PC) needs are less widely acknowledged in patients with multiple myeloma (MM) than in other HM. The main objective of our study was to describe EOL care and PC referral in a population of older patients with MM.
We retrospectively included deceased inpatients and outpatients with an MM previously diagnosed at the age of 70 and over in two tertiary centres in France. We reported EOL characteristics regarding treatments considered to be aggressive—antimyeloma therapies, hospitalisations, blood product transfusions, intensive care units (ICUs) or emergency admissions—and PC referral.
We included 119 patients. In their last month of life, 75 (63%) were hospitalised for fever, pain, asthenia, anaemia or bleeding, 49 (41%) were admitted in the emergency department and 12 (10%) in ICU, 76 (64%) still received antimyeloma therapy and 45 (38%) had at least two transfusions. Only 24 (20%) received PC intervention for pain, global care, family support, anxiety, social care or confusion. Median follow-up until death was 20 days.
Our study found a high rate of hospitalisations and antimyeloma therapies in the last month of life. The PC referral rate was low, often once specific treatments were stopped. Our results suggest the need for more effective collaboration between PC teams and haematologists in order to respond to the specific needs of these patients and to improve their quality of care at EOL.
To analyse the survival of patients with malignant esophagorespiratory fistulas (ERF) and perform a comparative effectiveness analysis of ERF-directed interventions.
Fifty-five patients met our inclusion criteria, and data on ERF-directed interventions (stent placement, surgical repair and best supportive care) and their outcomes, along with clinical and treatment details, were recorded. The primary endpoints were overall survival (OS) and survival after developing ERF (F-OS).
The median OS and F-OS for the entire cohort was 299 days (SE=23.2) and 123 days (SE=11.63), respectively. On univariable analysis, the American Joint Committee on Cancer (AJCC) stage (I–III vs IV) influenced both OS (403 vs 171 days; p=0.006) and F-OS (129 vs 67 days; p=0.034). Proximal location of ERF influenced OS favourably (494 vs 285 days; p=0.021), whereas patients developing ERF late in their disease course experienced inferior F-OS (96 vs 232 days; p=0.03). On multivariable analysis, the AJCC stage (IV vs I–III, HR=3.03 (1.41–6.50)), time to developing ERF from diagnosis (greater than vs within 3 months, HR=5.82 (1.84–18.36)) and location of ERF (distal vs proximal, HR=2.47 (1.14–5.34)) had a significant impact on F-OS. The comparative efficacy (OS and F-OS) of best supportive care was statistically equivalent to any intervention irrespective of AJCC stage and success/failure of initial or subsequent intervention(s).
The survival of patients with ERF is dismal, and our analysis suggests that best supportive care results in equivalent OS and F-OS when compared with any intervention.
To study how treatment decisions are made alongside the lung cancer clinical pathway.
A prospective, multicentre, multimethods, five-stage, qualitative study. Mediated discourse, thematic, framework and narrative analysis were used to analyse the transcripts.
51 health professionals, 15 patients with advanced lung cancer, 15 family members and 18 expert stakeholders were recruited from three UK NHS trusts. Multidisciplinary team (MDT) members constructed treatment recommendations around patient performance status, pathology, clinical information and imaging. Information around patients’ social context, needs and preferences were limited. The provisional nature of MDTs treatment recommendations was not always linked to future discussions with the patient along the pathway, that is, patients’ interpretation of their prognosis, treatment discussions occurring prior to seeing the oncologist. This together with the rapid disease trajectory placed additional stress on the oncologist, who had to introduce a different treatment option from that recommended by the MDT or patient’s expectations. Palliative treatment was not referred to explicitly as such, due to its potential for confusion. Patients were unaware of the purpose of each consultation and did not fully understand the non-curative intent of treatment pathways. Patients’ priorities were framed around social and family needs, such as being able to attend a family event.
Missed opportunities for information giving, affect both clinicians and patients; the pathway for patients with non-small cell lung cancer focuses on clinical management at the expense of patient-centred care. Treatment decisions are a complex process and patients draw conclusions from healthcare interactions prior to the oncology clinic, which prioritises aggressive treatment and influences decisions.
An interdisciplinary team approach to patients in specialised palliative care is recommended; however, the composition of the professionals tends to vary, and the roles of physiotherapists and occupational therapists may be underestimated. We aimed to investigate patient-reported unmet needs, which potentially could benefit from physiotherapy and occupational therapy interventions in a specialised palliative care team.
Adult patients with chronic advanced diseases referred to the Specialised Palliative Care Team at Copenhagen University Hospital, Rigshospitalet were enrolled in the study. The Three-Levels-of-Needs Questionnaire was used as primary outcome to assess symptom/problem intensity, symptom/problem burden and felt needs for 12 commonly reported symptoms/problems for patients referred to a specialised palliative care team. Furthermore, participants’ level of distress, fatigue and physical activity, symptoms of anxiety and depression, and barriers towards the rehabilitation programme were registered with other measures.
In total, 43 of 67 (64%) patients participated. The majority of participants reported severe symptoms/problems concerning fatigue (81%), impaired physical activities (77%), carrying out work and daily activities (77%), pain (72%), and worries (58%). Furthermore, need for help was expressed concerning physical activities (79%), work and daily activities (77%), fatigue (70%), pain (65%), concentration (58%) and worries (51%). On average the patients characterised 6 (out of 12) symptoms/problems as severe.
Patients referred to a specialised palliative care team reported extensive unmet needs concerning physical activities, work and daily activities, fatigue, pain, concentration and worries. Unmet needs that potentially could be alleviated by physiotherapists or occupational therapists implemented in the interdisciplinary team.
Family meetings (FMs) between clinicians, patients and family are recommended as a valuable communication and care planning method in the delivery of palliative care. However, there is a dearth of knowledge regarding FM characteristics, with few studies describing the prevalence, circumstances and content of FMs. The aims of this study were to: (1) measure the prevalence of FMs, (2) examine circumstance and timing of FMs, and (3) explore the content of FMs.
A retrospective medical record audit was conducted of 200 patients who died in an Australian hospital of an expected death from advanced disease. Details of FMs were collected using an audit tool, along with patient demographics and admission data.
33 patients (16.5%) had at least one FM during their inpatient stay. The majority of FMs occurred for patients admitted to an inpatient palliative care unit (59.5%) and were most commonly facilitated by doctors (81.0%). Patient attendance was frequent (40.5%). FM content fell into six categories: medical information, supportive communication behaviours of clinicians, psychosocial support for patients and families, end-of-life discussions, discharge planning and administrative arrangements.
Despite the benefits FMs confer, FMs appear to be infrequently used at the end of life. When FMs are used, there is a strong medical focus on both facilitation and content. Available FM documentation tools also appear to be underused. Clinicians are encouraged to have a greater understanding of FMs to optimise their use and adopt a proactive and structured approach to the conduct and documentation of FMs.
COVID-19 pandemic could create a collateral damage to cancer care denoting disruptions in care due to a significant burden on healthcare and resource allocations. Herein, we evaluate the early changes in the inpatient and outpatient oncology clinics to take a snapshot of this collateral damage at Hacettepe University Cancer Institute.
Patients applying the outpatient clinic and outpatient palliative care (OPC) clinic for the first time and patients admitted to inpatient wards in the first 30 days after the first case of COVID-19 in Turkey were evaluated. These data were compared with data from the same time frame in the previous 3 years.
The mean number of daily new patient applications to the outpatient clinic (9.87±3.87 vs 6.43±4.03, p<0.001) and OPC clinic (3.87±1.49 vs 1.13±1.46, p<0.001) was significantly reduced compared with the previous years. While the number of inpatient admissions was similar for a month frame, the median duration of hospitalisation was significantly reduced. The frequency of hospitalisations for chemotherapy was higher than in previous years (p<0.001). By comparison, the rate of hospitalisations for palliative care (p=0.028) or elective interventional procedures (p=0.001) was significantly reduced.
In our experience, almost all domains of care were affected during the pandemic other than patients’ systemic treatments. There were significant drops in the numbers of newly diagnosed patients, patients having interventional procedures and palliative care services, and these problems should be the focus points for the risk mitigation efforts for prevention of care disruptions.
The collaboration between palliative care and neurology has developed over the last 25 years and this study aimed to ascertain the collaboration between the specialties across Europe.
This online survey aimed to look at collaboration across Europe, using the links of the European Association for Palliative Care and the European Academy of Neurology.
298 people completed the survey—178 from palliative care and 120 from neurology from over 20 countries across Europe. They reported that there was good collaboration in the care for people with amyotrophic lateral sclerosis and cerebral tumours but less for other progressive neurological diseases. The collaboration included joint meetings and clinics and telephone contacts. All felt that the collaboration was helpful, particularly for maintaining quality of life, physical symptom management, psychological support and complex decision making, including ethical issues.
The study shows evidence for collaboration between palliative care and neurology, but with the need to develop this for all neurological illness, and there is a need for increased education of both areas.
Death is a significant event that affects healthcare providers emotionally. We aimed to determine internal medicine (IM) and paediatric (PD) residents’ responses and the impact on the residents following patient deaths, and to compare any differences between IM and PD residents. We also aimed to determine whether sufficient resources and measures were in place to support residents through their grief process.
This is a single-centre, cross-sectional study involving residents from IM and PD programmes from an academic tertiary hospital in Singapore. The residents completed a questionnaire regarding their responses and emotions after experiencing patient deaths.
A total of 122 residents (85 IM and 37 PD, equally distributed between year 1 to year 4 of residency training) participated, with 100% response rate. Only half (57%) felt they would be comfortable treating a dying patient and 66.4% reported feeling sad following their patient’s death. Most (79.5%) were not aware of support resources that were available and 82% agreed that formal bereavement training should be included in the residency curriculum. PD residents had more negative symptoms than IM residents, with poor concentration (PD 35.1% vs IM 16.5%, p=0.02) and lethargy (PD 35.1% vs IM 9.4%, p<0.01) being the most common.
In our Asian context, residents are negatively affected by patient deaths, especially the PD residents. There is a need to incorporate relevant bereavement training for all residents.
Approximately 460 000 people die annually in England. Three-quarters of these deaths are expected. Health Education England is prioritising upskilling of clinical staff in response to reports of poor care quality in the last days of life in acute hospitals, where almost half of all deaths occur. This study explores the impact of an end-of-life care (EoLC) educational intervention, Milestones, in acute hospital trusts in Greater London.
This is a mixed methods study. Learners completed a questionnaire pre- (n=452), immediately post- (n=488) and 3 to 8 months post- (n=37) intervention. The questionnaire measured learner confidence in EoLC covering the National Health Service adopted ‘Priorities for the Care of the Dying Person’. Paired t-tests were used to determine statistically significant difference in learner confidence pre- and post-intervention. A convenience sample of learners (n=7) and educators (n=5) were recruited to qualitative semi-structured interviews that sought to understand if, how and why Milestones worked. Data were analysed using a thematic approach.
A statistically significant increase in learner confidence across all five priorities of care’ was sustained up to 8 months (p<0.001). Interviewees wanted to discuss wider challenges in EoLC related to the organisations and cultural contexts in which they worked. Concerns included balancing hope when decision-making, learning as a multidisciplinary team and emotional impact.
The findings suggest that Milestones is a flexible, beneficial resource for teaching EoLC that facilitates enhanced learner engagement. Understanding generated about wider concerns can inform future educational material development, organisational process and research study design.
Meaning in life (MIL) represent a key topic in palliative care. The aims of this study were to explore (1) the differences in perceived MIL and in the meaning-relevant life areas between a representative sample of the Swiss population and palliative care patients, and (2) to what extent MIL can be considered as a significant predictor of quality of life (QOL).
A cross-sectional study was conducted separately for the patients (face-to-face interviews) and the general population (telephone survey). MIL was measured with the Schedule for Meaning in Life Evaluation (SMILE) and QOL with a single-item visual analogue scale (0–10). Sociodemographic variables were controlled for in the analyses.
206 patients and 1015 participants from the Swiss population completed the protocol. Results indicated high MIL scores in both populations even if the difference was significant (patients 81.9 vs general population 87, p<0.001). Patients were more likely to cite ‘family’ (OR=1.78), ‘social relations’ (OR=1.9), ‘spirituality and religion’ (OR=3.93), ‘social commitment’ (OR=1.94) and ‘growth’ (OR=2.07), and less likely to cite ‘finances’ (OR=0.15) and ‘health’ (OR=0.21) as MIL-relevant areas. The SMILE scores and MIL areas explained 21.8% of the QOL variance for the patients and 15.1% for the representative sample.
Our data emphasise the importance of MIL as a contributor to QOL in both populations. It highlights the importance of the life areas contributing to MIL, especially social interactions for both populations, and spirituality and areas related to growth in palliative care patients.
The concept of a good death is a motivating factor for end of life care policy; this article examines what English end-of-life care (EOLC) policy defines as a good death.
Critical discourse analysis of policy documents and policy-promoting materials published between 2008 and 2016.
Policy explicitly defines a good death as having the following attributes: being treated as an individual, with dignity and respect; being without pain and other symptoms; being in familiar surroundings and being in the company of close family and/or friends. Critical discourse analysis of 54 documents found that rather than just being an outcome or event, descriptions of what makes a death good also include many processes. A more extended definition includes: the person receives holistic EOLC; the dying person is treated with dignity and respect; the death is not sudden and unexpected; people are prepared and have ideally done some advance care planning; people are aware that someone is dying and openly discuss this; on knowing the dying person’s preferences, all involved are to work towards achieving these; the place of death is important; the person’s family are involved and the needs of the bereaved are considered.
This analysis indicates the complex nature of the current discourses around good death in EOLC policy, which often focuses on care rather than death. Policy should focus on outlining what quality end-of-life care looks like, rather than assume ‘good death’ is a suitable outcome statement.
We present a 67-year-old male, with palliative hypopharyngeal squamous cell carcinoma, who contracted COVID-19 infection while in hospital. Cancer diagnosis, among other clinical features, increases the risk of poor outcome of COVID-19 infection. A recently validated risk calculator (COVID-GRAM) can help to guide prognosis.
COVID-19 infection caused significant clinical deterioration in this patient. A Treatment Escalation Plan of ward-based care was put in place and the palliative care team involved. The goal of care was comfort.
The patient improved clinically and retested negative for COVID-19. He was discharged to a nursing home for ongoing supportive care of his malignancy.
The validated COVID-GRAM calculator predicted a greater than 99% risk that this patient would require intensive therapy unit admission or die. This patient overcame significant physiological challenges to survive COVID-19, highlighting the challenges of prognostication and suggesting that palliation of COVID-19 is not detrimental to survival.
Cancer survivors’ perceptions of healthcare have been identified as a predictor of quality of life (QoL) outcomes. This study aims to explore colorectal cancer (CRC) survivors’ perceptions of how cancer-related healthcare affects their QoL.
Semistructured interviews were conducted with 22 CRC survivors receiving follow-up care between 1 and 5 years post diagnosis. Interviews were recorded, transcribed and analysed thematically.
Five themes described the impact of healthcare experiences on CRC survivors’ QoL. While cancer survivors spoke positively of their relationships with healthcare professionals, many experienced a range of unmet information and supportive care needs. Participants described a range of positive and negative experiences, as power dynamics and navigation of healthcare systems had implications for their QoL. Where negative healthcare events aligned, survivors’ autonomy, dignity and confidence were undermined, and survivorship issues could be inadequately addressed. To address persistent unmet needs, survivors developed a safety net(work) of supports to bridge the gap of unmet needs in healthcare with varying outcomes.
Cancer survivors’ experience of follow-up and healthcare can positively or negatively affect their QoL. Preparation for cancer survivorship must be incorporated into the acute phase of diagnosis and treatment and interlinked with clear pathways of survivorship care and accessible supportive care, which support survivors to be equal partners in their healthcare. Understanding cancer survivors’ knowledge, expertise and mastery of their condition is essential to ensure delivery of person-centred supportive care that adequately addresses the survivor’s unmet needs.
Increasing utilisation of hospice services has been a major focus in oncology, while only recently have cardiologists realised the similar needs of dying patients with heart failure (HF). We examined recent trends in locations of deaths in these two patient populations to gain further insight.
Complete population-level data were obtained from the Mortality Multiple Cause-of-Death Public Use Record from the National Center for Health Statistics database, from 2013 to 2017. Location of death was categorised as hospital, home, hospice facility or nursing facility. Demographic characteristics evaluated by place of death included age, sex, race, ethnicity, marital status and education, and a multivariable logistic regression analysis was performed to analyse possible associations.
Among 2 780 715 deaths from cancer, 27% occurred in-hospital and 14% in nursing facilities; while among 335 350 HF deaths, 27% occurred in-hospital and 30% in nursing facilities. Deaths occurred at hospice facilities in 14% of patients with cancer, compared with just 8.7% in HF (p=0.001). For both patients with HF and cancer, the proportion of at-home and in-hospice deaths increased significantly over time, with majority of deaths occurring at home. In both cancer and HF, patients of non-Hispanic ethnicity (cancer: OR 1.29, (1.27 to 1.31), HF: OR 1.14, (1.07 to 1.22)) and those with some college education (cancer: OR 1.10, (1.09 to 1.11); HF: OR 1.06, (1.04 to 1.09)) were significantly more likely to die in hospice.
Deaths in hospital or nursing facilities still account for nearly half of cancer or HF deaths. Although positive trends were seen with utilisation of hospice facilities in both groups, usage remains low and much remains to be achieved in both patient populations.
Optimal cystic fibrosis (CF) end-of-life care (EOLC) is a challenge. There is little formal guidance about who should deliver this and how CF multi-disciplinary teams should interact with specialist palliative care. We assessed the knowledge, experience and preparedness of both CF and palliative care professionals for CF EOLC.
An electronic questionnaire was distributed to all members of the Oxford adult CF and palliative care teams.
35 of a possible 63 members responded (19 CF team; 16 palliative care). Levels of preparedness were low in both groups. Only 11% of CF and 19% of palliative care team members felt fully prepared for EOLC in adult CF. 58% of CF members had no (21%) or minimal (37%) general palliative care training. Similarly, 69% of the palliative care team had no CF-specific training. All respondents desired additional education. CF team members preferred further education in general EOLC while palliative care team members emphasised a need for more CF-specific knowledge.
Few members of either the CF or palliative care teams felt fully prepared to deliver CF EOLC and many desired additional educations. They expressed complementary knowledge gaps, which suggests both could benefit from increased collaboration and sharing of specialist knowledge.
MicroRNAs (miRNAs) have recently been reported as useful diagnostic markers in cancer; however, relationships of miRNAs with adverse events during chemotherapy have yet to be fully described. In this study, we examined the relationship between serum miRNA and the risk of peripheral neuropathy (PN), a common and persistent adverse event induced by paclitaxel, in patients with breast cancer.
A total of 84 serum samples from patients with breast cancer, who received paclitaxel as neoadjuvant or adjuvant chemotherapy, were obtained between January 2011 and September 2013 at National Cancer Center Hospital. Samples were divided, 2:1, into a training cohort and a test cohort, respectively; both cohorts included specimens from patients with severe PN (≥grade 2, PN group) and non-severe PN controls (non-PN group). The training cohort was used to identify miRNAs, and combinations thereof, that could predict PN, which then were validated in the test cohort.
Eighty-four patients received paclitaxel: 38 and 46 patients in the PN and non-PN groups, respectively. We identified 15 discriminatory miRNAs with |fold change|>0.5, and 14 combinations of three miRNAs showed the ability to discriminate, with sensitivity, specificity and accuracy of >50%. The most discriminatory miRNA, with the highest |fold change|, was miR-451a, which regulates the expression of the drug-transporter protein P-glycoprotein, potentially promoting paclitaxel resistance.
MiR-451a could be a predictive marker for PN caused by paclitaxel-containing chemotherapy; however, further investigation of the underlying mechanism is required to determine the role of miR-451a.
While guidelines recommend palliative care in non-cancer conditions, this has not been widely implemented. We examined whether the recording of a palliative care approach and the numbers of hospital deaths for deceased patients with heart failure, dementia, chronic obstructive pulmonary disease (COPD) and cancer have changed since the UK End-of-Life Care Strategy was introduced.
We conducted sequential cross-sectional studies of decedents within the UK’s Clinical Practice Research Datalink and Hospital Episode Statistics. All adults with a primary care record of COPD (n=5426), dementia (n=7339), heart failure (n=6409) or cancer (n=18 668) who died during three 1 year periods (April 2009 to March 2014) were included. Evidence of a palliative care approach was identified from primary care records, and death in hospital from secondary care data.
From 2009 to 2014, proportions with a primary care record of palliative care increased for COPD from 13.6% to 21.2%; dementia from 20.9% to 40.7%; and heart failure from 12.6% to 21.2%; but remained substantially lower than for cancer (57.6% to 61.9%). Median days before death of recording improved for COPD (145 to 224) and dementia (44 to 209); but not for heart failure (168.5 to 153) and cancer (123 to 114). Trends in hospital deaths were not consistently downward, although the proportions of patients dying in hospital were lower in the last period compared with the first.
Recording of a palliative care approach for non-cancer conditions has increased since the introduction of the UK End-of-Life Care Strategy, but remains inadequate.
Existing data examining mortality rates following inpatient hospital admissions in the UK are either condition specific or examining all inpatient mortality based on single time point audits. This clinical effectiveness project aimed to assess mortality rates in patients admitted to complex care (CC) wards managed by geriatricians at Southmead hospital, Bristol.
Data were collected by the trust’s audit department and analysed by the authors. All patients admitted to the four CC wards from July to December 2017 were included. Data collected included age, gender, date of admission, length of stay, date of discharge and date of death if applicable.
2673 patients were admitted to CC wards from July to December 2017. 42.72% of patients were men, and mean age of patients was 82.46 years. Mean length of stay was 16.68 days. 292 (10.92%) of patients died during the index admission. Overall mortality rates were: (1) 1 month: 11.34% (303 patients); (2) 3 months: 21.59% (577 patients); (3) 6 months: 30.15% (806 patients); (4) 12 months: 38.53% (1030 patients). 12-month mortality increased with age from 75 upwards (34.04% in 75–79 years, 42.94% in 85–89 years, 50.27% in 95–99 years, 66.67% in 100–104 years) but was similar in those aged 65–69 and 70–74 years (29.41% and 28.18%, respectively).
An improved understanding of mortality rates in patients requiring an admission under geriatricians may aid clinicians’ ability to prognosticate. Appreciating that over a third of these patients are potentially in the last year of life provides further impetus to begin advance care planning discussions during inpatient admissions.
Acceptance of palliative care (PC) in the USA has increased in recent decades with the growing number of recommendations for adoption from professional organisations. However, there are prevalent public misperceptions of PC that may prevent broader utilisation. This study seeks to identify the primary sources for PC information, which may help identify sources of misperception and improve PC messaging.
We analysed the 2018 Health Information National Trends Survey (HINTS), a representative survey of USA population knowledge regarding cancer-related information. This is the first iteration to include questions on PC. Prevalence of preferred PC information sources was estimated; multivariable logistic regression invoking stepwise variable selection was used to determine associations with information-seeking behaviour.
Our study cohort consisted of 1127 American adults who were familiar with PC. Overall, 59.3% and 34.0% relied primarily on healthcare providers and internet or printed media, respectively. In stepwise regression models of seeking information from healthcare providers, predictors and their relative contributions to the multivariable model were higher education attainment (58.7%), age ≥60 years (21.5%) and female sex (15.0%). Higher income was the most robust predictor (35.1%) of reliance on internet and printed media for information, followed by being currently married (26.2%).
Overall, American adults rely on healthcare providers and media for PC information, with significant sociodemographic differences in information-seeking behaviour. These findings may be used to inform strategies to promote accurate PC awareness.
Evidence of the role of palliative care to reduce financial hardship and to support wellbeing in low/middle-income countries (LMIC) is growing, though standardised tools to capture relevant economic data are limited. We describe the development of the Patient-and-Carer Cancer Cost Survey (PaCCCt survey) which can be used to gather data on healthcare use and out-of-pocket expenditure (OOPE) in households affected by cancer in LMIC.
To identify relevant content qualitative data were gathered using Photovoice to detail concepts of wellbeing and cost areas of importance in households receiving palliative care in Blantyre, Malawi. Existing approaches and tools used to capture OOPE were mapped through a review of the literature. The WHO tuberculosis patient cost survey was chosen for adaptation. Face and content validity of a zero-draft of the PaCCCt survey were developed through review by healthcare professionals and a national stakeholder group. The final survey was translated into local language (Chichewa) and piloted.
The PaCCCt survey is a tablet-based, third-party administered survey recording healthcare service utilisation and related direct and indirect costs. Coping strategies (loans and dissaving and so on), funeral costs and wellbeing at household level are included. Completion time is <30 min.
The PaCCCt survey can be used as part of economic evaluations in populations in need of palliative care in LMIC. Such evidence can support calls for the inclusion of palliative care within Universal Health Coverage which requires end-user protection from financial hardship.
Patients are living longer with active, advanced or metastatic disease that cannot be cured, but may be managed (ie, ‘chronic cancer’). The experiences and needs within this growing group are likely to be different from those shortly after diagnosis, on active curative treatment, or in the palliative or end-of-life phase, yet are poorly defined. We described chronic cancer patient experiences and support needs in a quantitative, multicentre cross-sectional study.
Patients from five district general hospitals in England completed the 75-item Chronic Cancer Experiences Questionnaire (CCEQ). Responses were described and linear regression analysis was performed to explore the associations between poorer patient experiences and clinical/sociodemographic variables.
In total, 416 patients with prostate cancer (28%), breast cancer (24%), gynaecological cancer (19%), colorectal/gastrointestinal cancer (17%) and renal cancer (12%) completed the CCEQ (response rate 90%). Younger patients, those who had a longer interval between primary and advanced diagnosis and those not in a relationship, had worse experiences (R2=0.098, p<0.05). Cancer-specific symptoms were common, with 80% of participants experiencing fatigue. Areas related to poorest experiences include the coordination of care, general practitioner involvement, coping with limitations, and worries and anxieties.
Psychological burden remains high in the chronic phase of cancer, and patients experience ongoing difficulties in accessing support and services. Younger patients who have been ill for longer and those who have less social support may be particularly vulnerable, and future studies are needed to investigate the best way to meet the unique needs of this growing patient population.
The aim of this study was to investigate factors predictive for ‘death at home’ for patients admitted to an advanced medical home care unit in Stockholm, Sweden, with a focus on possible gender differences. In addition, place of death in relation to the patient’s wishes was studied.
A retrospective review of medical records of all 456 deceased patients, 233 men and 223 women, admitted to the unit during 2017 was performed. Data on age, diagnosis, living conditions, Swedish language skills, desired place of death (if stated) and place of death were retrieved from the patients’ charts.
A total of 114 of 456 patients died at home (25%). The probability of ‘death at home’ was independent of gender, age, diagnosis, living conditions and Swedish language skills. In a binary logistic regression model, the only factor significantly associated with death at home was ‘the wish to die at home’ (p<0.001). In the study population, 154 patients (34%) had expressed a preferred place of death, 116 (75%) wanted to die at home and 38 (25%) wanted to die in hospice. Of all patients who expressed a preferred place of death, 80% (n=123) had their wishes fulfilled and there were no differences between the sexes.
This study indicates equal opportunities regarding the possibility to die at home for patients admitted to advanced medical home care. It emphasises the importance of asking patients where they want to be at the end of life, as it was the foremost prognostic factor for place of death.
Early identification of approaching end-of-life and care planning improve outcomes at the end of life. Nevertheless, the majority of people who die are not identified in time to enable appropriate care planning. We aimed to describe the challenges general practitioners (GPs) found in providing end-of-life care; what prompted GPs to identify and discuss approaching end of life with their patient and how their practice changed.
We conducted a qualitative study of 15 Australian GPs using semi-structured interviews, examining end-of-life care of one of their randomly selected, deceased patients. Interviews were analysed using a general inductive approach.
When a life-limiting prognosis was articulated, GPs integrated end-of-life care into their clinical care directly. Care often included a care plan developed in consultation with the patient. Even when death was not articulated, GPs were aware of approaching end of life and changed their focus to comfort of the patient. GPs generally had an informal care plan in mind, but this developed gradually and without discussing these plans with the patient. How GPs provided end-of-life care depended primarily on patient traits (eg, willingness to discuss physical decline) and the GP’s characteristics (eg, experience, training and consulting style).
GPs were aware of their patients’ approaching end of life and care was adjusted accordingly. However, under certain circumstances this was not explicitly articulated and discussed. It is not clear if implicit but unarticulated end-of-life care is sufficient to meet patients’ needs. Future studies should investigate this.
General practitioners (GPs) and general practice nurses (GPNs) face increasing demands to provide end-of-life care (EoLC) as the population ages. To enhance primary palliative care (PC), the care they provide needs to be understood to inform best practice models of care.
To provide a comprehensive description of the self-reported role and performance of GPs and GPNs in (1) specific medical/nursing roles, (2) communication, (3) care co-ordination, (4) access and out-of-hours care, and (5) multidisciplinary care.
Systematic literature review. Data included papers (2000 to 2017) sought from Medline, Psychinfo, Embase, Joanna Briggs Institute and Cochrane databases.
From 6209 journal articles, 29 reviewed papers reported the GPs’ and GPNs’ role in EoLC or PC practice. GPs report a central role in symptom management, treatment withdrawal, non-malignant disease management and terminal sedation. Information provision included breaking bad news, prognosis and place of death. Psychosocial concerns were often addressed. Quality of communication depended on GP–patient relationships and GP skills. Challenges were unrealistic patient and family expectations, family conflict and lack of advance care planning. GPs often delayed end-of-life discussions until 3 months before death. Home visits were common, but less so for urban, female and part-time GPs. GPs co-ordinated care with secondary care, but in some cases parallel care occurred. Trust in, and availability of, the GP was critical for shared care. There was minimal reference to GPNs’ roles.
GPs play a critical role in palliative care. More work is required on the role of GPNs, case finding and models to promote shared care, home visits and out-of-hours services.
Although the effectiveness of early palliative care for patients with advanced cancer has been demonstrated in several trials, there has been no detailed published description of an early palliative care intervention.
In this paper, we delineate the iterative conception and systematic evaluation of a complex intervention called team-based outpatient early palliative care (TO-EPC), and describe the components of the intervention. The intervention was developed based on palliative care theory, review of previous palliative care interventions and practice guidelines. We conducted feasibility testing and piloting of TO-EPC in a phase 2 trial, followed by evaluation in a large cluster randomised trial and qualitative research with patients and caregivers. The qualitative research informed the iterative refinement of the intervention.
Four principles and four domains of care constitute a conceptual framework for TO-EPC. The main domains of care are: coping and support, symptom control, decision-making and future planning. The main principles are that care is flexible, attentive, patient-led and family-centred. The most prominent domain for the initial consultation is coping and support; follow-up visits focus on symptom control, decision-making to maximise quality of life and future planning according to patient readiness. Key tasks are described in relation to each domain.
The description of our intervention may assist palliative care teams seeking to implement it, researchers wishing to replicate or build on it and oncologists hoping to adapt it for their patients.
Physicians’ decision-making in end-of-life (EOL) care includes many medical, ethical and juridical aspects. We studied the changes of these decisions over time and factors influencing them.
A postal survey including two hypothetical patient scenarios was sent to 1258 Finnish physicians in 2015 and to 1182 in 1999. The attitudes, values and background factors of the physicians were also enquired.
The response rate was 56%. The physicians’ decisions to choose palliative approaches over active or intensive care increased from 1999 to 2015 when a terminally ill prostate cancer patient had probable iatrogenic gastrointestinal bleeding (53% vs 59%, p=0.014) and waited to meet his son (46% vs 60%, p<0.001) or a minister (53% vs 71%, p<0.001). Training in EOL care independently increased palliative approaches. Patient’s benefit (96% vs 99%, p=0.001), ethical values (83% vs 93%, p<0.001) and patient’s (68% vs 86%, p<0.001) or physician’s (44% vs 63%, p<0.001) legal protection were considered more influential to the decisions in 2015, while the family’s benefit was regarded as less influential to the decisions than it was in 1999 (37% vs 25%, p<0.001). Physicians were more willing to give a hospice voucher for an advanced breast cancer patient in 2015 (34% vs 58%, p<0.001).
Our findings may reflect the transition to a stronger emphasis on patient-centred care and a stronger tendency to avoid futile therapies that have only short-term goals. The results highlight that education in all aspects of EOL care should be incorporated into the post-graduate training of medical specialties that take care of dying patients.
To analyse the association between occupational performance and women’s health-related quality of life (HRQoL) during breast cancer treatment.
An analytical cross-sectional study was conducted using the Canadian Occupational Performance Measure, the European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire and its specific breast cancer-specific module (BR-23). The association between occupational performance scores and the HRQoL domains was evaluated using multiple linear regression analysis.
The sample included 97 women. Overall, occupational performance was poor and the women’s dissatisfaction with their performance resulted in a decrease in HRQoL. Following adjustment, satisfaction was associated with HRQoL in the global health status, functional, role, emotional and social functioning domains of the functional scale. In BR-23, a statistically significant association was found between satisfaction and HRQoL in the functional scale and in the body image domain.
Women’s occupational performance was impaired during breast cancer treatment, with limitations and/or restrictions in activities related to self-care, productivity and leisure that were ultimately associated with poorer HRQoL. During cancer treatment, rehabilitation strategies should focus on restoring occupational performance to levels as close as possible to that present prior to the beginning of the disease process, enabling the woman to preserve her occupational life, consequently resulting in an improvement in HRQoL.
Thirty-day mortality (30 DM) is a measure of quality of cancer treatment and the predictors for 30 DM are important to identify vulnerable patients who are least likely to benefit from chemotherapy. We assessed the incidence and potential predictors of 30 DM in patients receiving chemotherapy.
All patients who received chemotherapy within an 8-month period in our hospital were assessed. Baseline prechemotherapy clinical features, vital signs, Modified Early Warning Scores (MEWS) and laboratory tests were recorded. Potential predictors of 30 DM were evaluated using multivariate logistic regression analysis.
Among 4560 patients included, 77 patients (1.7%) died within 30 days of chemotherapy. Patients who died were older (62 vs 58, p=0.002), mostly males (61% vs 43%, p=0.006), had worse Eastern Cooperative Oncology Group performance scores (ECOG PS), and higher MEWS scores compared with those who survived. Multivariate analysis identified age ≥60 years (OR 2.2, 95% CI 1.2 to 4.1, p=0.01), male gender (OR 2.1, 95% CI 1.1 to 3.9, p=0.02), ECOG PS≥3 (OR 3.2, 95% CI 1.1 to 8.8, p=0.03), pulse rate ≥90 bpm (OR 3.8, 95% CI 2.0 to 7.0, p<0.01), systolic blood pressure <110 mm Hg (OR 2.1, 95% CI 1.1 to 4.1, p=0.02), body mass index <25 kg/m2 (OR 2.1, 95% CI 1.1 to 3.8, p=0.02) and haemoglobin< 90 g/L (OR 14.2, 95% CI 4.3 to 46.6, p<0.01) to be associated with increased risk of 30 DM.
Along with well-known prognostic factors such as ECOG PS and disease stage, other simple and readily available parameters may predict early mortality after chemotherapy and produce a signal for the physicians to carefully reevaluate vulnerable patients before chemotherapy administration.
As the US population ages and healthcare reimbursement shifts, identifying new patient-centred, cost-effective models to address acute medical needs will become increasingly important. This study examined whether community paramedics can evaluate and treat, under the direction of a credentialed physician, high acuity medical conditions in the home within an advanced illness management (AIM) practice.
A prospective observational study of an urban/suburban community paramedicine (CP) programme, with responses initiated based on AIM-practice protocols and triaged prior to dispatch using the Advanced Medical Priority Dispatch System (AMPDS). Primary outcome was association between AMPDS acuity levels and emergency department (ED) transport rates. Secondary outcomes were ED presentations at 24 and 48 hours post-visit, and patient/caregiver survey results.
1159 individuals received 2378 CP responses over 4 years. Average age was 86 years; dementia, heart failure and asthma/chronic obstructive pulmonary disease were prevalent. Using AMPDS, most common reasons for dispatch included ‘breathing problems’ (28.2%), ‘sick person’ (26.5%) and ‘falls’ (13.1%). High acuity responses were most prevalent. 17.9% of all responses and 21.0% of high acuity responses resulted in ED transport. Within 48 hours of the visit, only 5.7% of the high acuity responses not initially transported were transported to the ED. Patient/caregiver satisfaction rates were high.
Community paramedics, operating within an AIM programme, can evaluate and treat a range of conditions, including high acuity conditions, in the home that would typically result in ED transport in a conventional 911 system. This model may provide an effective means for avoiding hospital-based care, allowing older adults to age in place.
Physicians face uncertainty when predicting death in heart failure (HF) leading to underutilisation of palliative care. To facilitate decision-making, we assessed the Seattle Heart Failure Model (SHFM) as a referral tool by evaluating its performance in predicting 1-year event-free survival from death, heart transplant (HTx), and ventricular assist device (VAD) implantation.
We retrospectively reviewed the charts of consecutive patients with advanced ambulatory HF with New York Heart Association Class III/IV HF and a left ventricular ejection fraction of ≤40% from 2000 to 2016. We evaluated SHFM’s performance by using the Cox proportional hazards model, its discrimination using the c-statistic, its calibration by comparing the observed and predicted survival and its clinical utility by hypothetically assessing the proportion of patients adequately or inadequately referred to palliative care.
We included 612 patients in our study. During the 1-year follow-up, there were 83 deaths, 4 HTx and 1 VAD. Although SHFM showed very good discrimination (c-statistic=0.71) and adequate calibration in medium to low-risk patients, it underestimated event-free survival by 12% in high-risk patients. SHFM’s clinical utility was limited: 33% of eligible patients would have missed the opportunity for referral and only 27% of referred patients would have benefited.
Use of SHFM could result in a high proportion of referrals while capturing the majority of patients who may benefit from palliative care. Though this may be a more encompassing and safer alternative than current referral practices, it could lead to many early referrals.
The aim of this study was to investigate how palliative care service structures and processes correlate with their outputs and outcomes, measuring the latter respectively in terms of intensity of care and death at home.
The Veneto Regional Health Authorities collected a set of 37 quality indicators for the year 2016, covering the following five dimensions: service integration, service structure, accessibility, professional processes and organisational processes. Their validity was assessed by a panel of 29 palliative care experts. A score was assigned to each indicator on the basis of its relevance. Non-parametric correlations between the care quality indicators and the measures of the palliative care outputs and outcomes were investigated, along with the presence of a monotonic trend in the performance of the local health units (LHU) grouped by ‘low’, ‘medium’ or ‘high’ scores and differences between these groups of LHUs.
The data showed that palliative care service structure and professional processes were the dimensions correlating significantly with the intensity of care coefficient. An increasingly significant statistical trend was found in both the intensity of care coefficient and the proportion of deaths at home for the three groups of LHUs in terms of the professional processes dimension.
Despite its limitations, this study brought to light some statistically significant findings that are worth investigating in larger samples. To achieve improvements in the quality of palliative care, it is important for healthcare providers to know which variables most affect the output and especially the outcomes of the services offered.
Patients with end-stage liver disease (ESLD) have a reduced life expectancy and a significant symptom burden. Our aim is to determine if inpatient palliative care (PC) referral for patients with ESLD is associated with decreased hospital readmission rates.
The 2013 US Nationwide Readmission Database (NRD) was used for the current analysis. The NRD allows for longitudinal analysis of all patient hospital admissions across 22 states. Patients ≥18 years of age with a diagnosis of ESLD with at least two decompensating events were included in the analysis. PC referral at the index hospitalisation divided the cohort into two groups, which were tracked for 9 months.
A total of 14 325 172 hospital admissions from the 2013 NRD were examined. In the first 3 months of 2013, a total of 3647 patients with ESLD were admitted with 206 (5.6%) receiving PC referral during the index admission. After the index hospitalisation, patients referred to PC were more likely to be discharged to skilled nursing facilities (45.5% vs 14.7%; p<0.01) or hospice/home care (32.9% vs 15.3%; p<0.01). After propensity score matching, those patients referred to PC demonstrated a significantly lower rate of 1-year hospital readmission (11.0% vs 32.1%; p<0.01).
Inpatient PC referral for patients with ESLD was associated with lower rates of hospital readmission. Early concurrent PC referral likely has added beneficial effects beyond quality of life issues and symptom management.
For many people with advanced kidney disease, their physical, psychological and emotional needs remain unmet. Kidney supportive care, fully integrating specialist kidney and palliative care teams, responds to the emotional and symptom distress in this cohort who may be on a non-dialysis care pathway or on dialysis and approaching end of life. We aimed to analyse and describe the operation and patient characteristics of a new kidney supportive care programme (KSCp).
A multidisciplinary KSCp was introduced through a tertiary hospital in Brisbane, Australia. Operational information and characteristics of referred patients were collected from internal databases and electronic medical records and analysed descriptively. Patient data were collected using validated instruments to assess symptom burden, health-related quality of life, health state, functional status and performance at clinic entry and analysed descriptively.
129 people with advanced kidney disease were referred to the KSCp within the first year (median age 74 (range 27.7–90.5), 48.1% female, median Charlson Comorbidity Index score 7 (IQR 6–8) and mean Integrated Palliative care Outcome Scale Renal score 19.6±9.8). 59% were currently receiving dialysis. The leading reason for referral was symptom management (37%). While quality of life and health state varied considerably among the cohort, in general, these parameters were well below population norms.
Results indicate that patients referred to the KSCp were those with a strong need for a patient-centred, integrated model of care. Shifting focus to co-ordinated, multidisciplinary care rather than discrete specialty silos appears key to addressing the challenging clinical problems in end-of-life care.
Evidence regarding out-of-hours (OOH) community palliative care provision is required to inform the need for a 7-day work.
This paper seeks to provide evidence for this discussion by defining general practitioners’ (GPs) OOH workload and patients’ demographics, symptomology and interventions. By quantifying the challenges faced, we can understand current practice and focus on what provision is required.
Using Shropshire Doctors Co-operative’s recorded data, the authors have collated a representative picture of the OOH GP palliative care practice over a year from 161 OOH GP–patient interactions.
Primary care.
Palliative care makes up 11.4% of the total OOH GP home visits (HV). Overall 56% of OOH GP HVs are for patients who are expected to die within 48 hours, with 80% of the symptoms being agitation, secretions and pain. Overall 5.7% of OOH GP palliative HVs resulted in hospital admission; however, this decreased to 0.6% adjusting for the last 48-hour prognosis.
OOH Shropshire GPs deal with a wide variety of scenarios in a heterogeneous population. The greatest demand is from 17:00 to 00:00 (65% of the total shift) on weekdays, and from 09:00 to 00:00 on weekends (82% of the shift). These data begin to quantify the role being performed by OOH GPs, have implications for service provision and support 7-day work.
General practitioners (GPs) are well placed to be involved in end-of-life care for patients with life-limiting illnesses. However, differing views exist regarding their role. This study aims to explore the views of GPs and specialist palliative care clinicians (SPCCs) on the role that GPs should play in the planning and provision of end-of-life care and important barriers and facilitators to GPs’ involvement in end-of-life care including suggestions for improvement.
Qualitative description methodology using semistructured interviews of 11 GPs and 10 SPCCs.
The participants identified two key roles that GPs should play in the planning and provision of end-of-life care: care planning and referring to palliative care services and being the primary clinician in charge of patient care. GPs and SPCCs expressed similar views; however, a significant proportion of the GP participants were not actively involved in end-of-life care. Factors affecting GPs’ involvement in end-of-life care included: (1) GP and practice factors including continuity of care, long-term relationships with patients, knowledge and skills in end-of-life care, resource limitations and work patterns; (2) communication and collaboration between GPs and the acute healthcare system and (3) communication and collaboration between GPs and SPCCs.
GPs have a key role in the planning and provision of end-of-life care. GPs could be encouraged in this role by providing them with education and practical experience in end-of-life care, making changes to remuneration structure, formalised arrangements for shared care and encouraging continuity of care and developing long-term relationship with their patients.
Patient held records need to be evaluated in palliative care settings.
To evaluate how patients, families and professionals in a specialist palliative setting use a patient held record created through close consultation with patients and carers.
A mixed methods prospective longitudinal cohort study in the UK—adult patients under community specialist palliative care nurse review or attending day hospice were given questionnaires at record introduction and after 4–6 weeks. Hospice staff completed a questionnaire and focus group after 8 months.
From Sept 2016 to June 2017, 550 patients were screened, 347 (63.1%) were offered records and 259 accepted (74.6%). 238 accepted a research pack, 105 returned questionnaire 1 (44.1% response rate) and 26 returned questionnaire 2 (24.8% of initial respondents). Questionnaire 1 (patients): 40% found it burdensome repeating information, and almost 70% were interested in a record to reduce this. Questionnaire 2 (patients): 74% found the record easy to use, but few (4, 15.4%) used it regularly. Over 60% stated the record was useful and would recommend it to others, despite not using it themselves. Professionals indicated that it was mainly patients and relatives who used the record, not non-palliative professionals.
While initial uptake of the record was high, use appeared low. While people saw real value in the record for others, they did not generally use it themselves. This evaluation demonstrates that patient held records are unlikely to be used by palliative care patients even though they see value in the concept.
The Word Cloud is a frequent wish in the 3 Wishes Project developed to nurture peace and ease the grieving process for dying critically ill patients. The objective was to examine whether Word Clouds can act as a heuristic approach to encourage a narrative orientation to medicine. Narrative medicine is an approach which can strengthen relationships, compassion and resilience.
Word Clouds were created for 42 dying patients, and we interviewed 37 family members and 73 clinicians about their impact. We conducted a directed qualitative content analysis, using the 3 stages of narrative medicine (attention, representation, affiliation) to examine the narrative medicine potential of Word Clouds.
The elicitation of stories for the Word Cloud promotes narrative attention to the patient as a whole person. The distillation of these stories into a list of words and the prioritisation of those words for arrangement in the collage encourages a representation that did not enforce a beginning, middle or end to the story of the patient's life. Strong affiliative connections were achieved through the honouring of patients, caring for families and sharing of memories encouraged through the creation, sharing and discussion of Word Clouds.
In the 3 Wishes Project, Word Clouds are 1 way that families and clinicians honour a dying patient. Engaging in the process of making a Word Cloud can promote a narrative orientation to medicine, forging connections, making meaning through reminiscence and leaving a legacy of a loved one. Documenting and displaying words to remember someone in death reaffirms their life.