Objective 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.
Methods 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.
Results 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.
Conclusions 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.
- end of life care
- advance care planning
- hospital care
Data availability statement
The data of this study are kept by AP and are available upon reasonable request.
This is an open access article distributed in accordance with the Creative Commons Attribution 4.0 Unported (CC BY 4.0) license, which permits others to copy, redistribute, remix, transform and build upon this work for any purpose, provided the original work is properly cited, a link to the licence is given, and indication of whether changes were made. See: https://creativecommons.org/licenses/by/4.0/.
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WHAT IS ALREADY KNOWN ON THIS TOPIC
Early integration of palliative and oncology care is important in order to comply with patients’ preferences for medical treatment and care.
Shared decision-making (SDM) is one of the key elements of patient-centred palliative care and requires discussion of medical information and patients’ values and preferences.
(Bereaved) relatives’ perspectives can inform research on quality of care.
WHAT THIS STUDY ADDS
Use of a standardised palliative care pathway may be beneficial for the quality of hospital care for patients with advanced incurable cancer, but does not necessarily affect relatives’ satisfaction with care.
Relatives are aware of challenges with the exchange of information.
Many bereaved relatives appreciate an aftercare discussion.
HOW THIS STUDY MIGHT AFFECT RESEARCH, PRACTICE OR POLICY
Improvement of information exchange between healthcare professionals is needed, since bereaved relatives were least satisfied with this aspect of care.
To optimise the quality and consistency of bereavement care, hospitals should routinely offer aftercare discussions to bereaved relatives, especially if patients die in the hospital.
For patients with advanced, incurable cancer early integration of palliative and oncology care is important in order to be timely able to comply with their preferences for medical treatment and care.1 2 Shared decision-making (SDM) is one of the key elements of patient-centred palliative care.2–5 In SDM, patients with advanced, incurable, cancer may weight the possible benefits of anticancer treatment and potential prolongation of life versus the risk of complications with substantial deterioration of quality of life. Moreover, SDM includes advance care planning (ACP), that is, discussion of preferences for future treatment and care.6 Making decisions about appropriate treatment requires discussion of medical information (eg, diagnosis, prognosis, treatment options) and patients’ values and preferences.7 Facilitators for SDM are, among others, a positive patient–physician interaction to ensure that patients trust their physicians and feel free to express their preferences, and involvement of family members and/or friends.2 5 Furthermore, information exchange between healthcare professionals, including information about ACP conversations, is important for patients' satisfaction and continuity of care.8
To support healthcare professionals who are not specialised in palliative care in integrating palliative care in oncology care, we developed a standardised digital palliative care pathway (PCP). This structured electronic medical checklist aims to support healthcare professionals in exploring patients’ values, needs and preferences, discussing possible interventions and coordination of (future) care, and documenting these discussions and decisions. The PCP includes guidance on identifying patients who might benefit from palliative care, by using the surprise question (‘Would you be surprised if this patient died within the next 12 months?’). After opening the PCP, various prompts guide the physician in exploring patients’ needs in all palliative care dimensions: physical, psychosocial and/or of spiritual nature. Furthermore, the PCP facilitates involvement of family and relatives and coordination of care. This coordination of care is facilitated by suggesting communication with the patient’s general practitioner and involvement of a palliative care team, pain team, social worker, psychologist and/or spiritual counsellor (online supplemental file 1).9 Using this PCP resulted in fewer medical interventions (including anticancer treatments), possibly indicating increased awareness among physicians of patients' impending death.10
The effect of complex interventions such as early integration of palliative care in oncology care is mainly studied by assessing the use of medical care at the end of life (EOL; eg, emergency room visits, used chemotherapy) or patients’ quality of life.11–13 Patients’ and (bereaved) relatives’ perspectives, and their satisfaction about care are also important outcome measures in research on quality of care.14–20 However, whether early integration of palliative care in oncology care affects the quality of palliative and EOL care has barely been studied.21 22 We investigated whether implementation of the PCP facilitated communication, that is, SDM, including ACP conversation, and satisfaction with care at EOL, as experienced by bereaved relatives.
Study design and population
This preintervention and postintervention study was part of a project investigating the effects of implementing a standardised PCP for patients with advanced cancer in a large teaching hospital in The Netherlands. Data were collected concerning adult patients who had been treated at the inpatient and/or outpatient clinic of the Departments of Oncology/Haematology and Lung Diseases and who died between February 2014 and February 2015 (pre-PCP period) or between November 2015 and November 2016 (post-PCP period). Details of this study have been reported elsewhere.9 10
Four weeks after a patient’s death, a letter was sent to the home address of the patient with our condolences and an advance notice about a survey studying the quality of and satisfaction with care at EOL as perceived by bereaved relatives. The questionnaire with further information about the survey was sent to the bereaved relatives 10–12 weeks after the patient’s death. Relatives who did not wish to participate were asked to voluntarily disclose their reason for non-participation on the front page of the questionnaire and return that page.
A questionnaire comprising 73 items was developed (online supplemental file 2). Sociodemographic characteristics of the patients and their relatives included gender, relationship, religion and level of education. The quality of communication between patients, their relatives and healthcare professionals in the last 3 months of life was measured using relevant items of the questionnaire developed by Witkamp et al and from the Views of Informal Carers—Evaluation of Services (VOICES) Questionnaire.19 20 Questions from the VOICES Questionnaire were translated into Dutch and back into English according to the European Organisation for Research and Treatment of Cancer (EORTC) guidelines for translating questionnaires.23 The questionnaire was pilot-tested among a mixed group of 13 persons (age between 31 and 66 years; educational level from low to high International Standard Classification of Education (ISCED); both healthcare professionals and lay people). They understood the questions and experienced no difficulties in answering them.
The EORTC IN-PATSAT32 Questionnaire was used to measure relatives’ satisfaction with hospital care.14 This questionnaire includes 11 multi-item and 3 single-item scales (32 items in total) on the quality of care provided by hospital doctors and nurses, as well as other aspects of the quality of hospital care. Answers are given on a five-point Likert scale (poor/fair/good/very good/excellent) and scores are standardised through linear transformation to a 0–100 scale. A higher score implies that relatives were more satisfied with care.
The last question in the questionnaire was an open text box where participants could add comments or ask for support if necessary.
Participants in this study were relatives of patients who were included in the study in either the pre-PCP or the post-PCP period; in the post-PCP period patients and their relatives were included irrespective of whether the PCP had been used (ie, the intention-to-treat principle was applied). The statistical significance of differences in patients’ and relatives’ characteristics and outcome measures between the pre-PCP and post-PCP period was tested using Mann-Whitney U tests for continuous variables, χ2 or Fisher’s exact tests for categorical variables, and χ2 tests for trends for ordinal variables. A power analysis was not performed, since the study concerned a secondary analysis of data from a larger study. A per-protocol analysis was carried out where pre-PCP experiences of bereaved relatives were compared with the experiences of only those relatives of patients in the post-PCP period for whom the PCP had actually been used.
Questionnaires were sent to 424 relatives in the pre-PCP and 426 relatives in the post-PCP period. In the pre-PCP period, 241 (57%) relatives responded, of whom 46 (11%) filled out the front page only and 195 (46%) completed the questionnaire (figures 1). In the post-PCP period, 230 (54%) relatives responded, of whom 50 (12%) filled out the front page only and 180 (42%) completed the questionnaire. The most common reasons for not participating were not interested to participate; too painful/still in mourning; mourning closed; only a short period of in-hospital care. Some relatives wrote a short statement of gratitude or of not being satisfied with delivered care in the hospital on the front page of the questionnaire (figure 1). In 105 (58%) of the 180 post-PCP patients whose relatives had completed the questionnaire, the PCP had been used in the last phase of their life.
Characteristics of patients and relatives
The mean age of the patients whose relatives completed the questionnaires was 71 years in the pre-PCP period and 73 years in the post-PCP period (p=0.042); somewhat more than half of all patients were male (58% and 59%, respectively). Gastrointestinal cancer was the most common primary cancer in both groups (34% and 33%, respectively). The majority of patients was married or living with a partner (76% and 77%, respectively) and had children (81% and 86%, respectively). Of all patients, one-third were religious, of whom a small part were Islamic (1% and 3%, respectively). Finally, most patients died outside the hospital and home was the most common place of death (45% and 42%, respectively). The relatives participating in the study had a mean age of 64 and 62 years, respectively, and were predominately the patient’s partner (70% and 59%, respectively) and in good health (62% and 58%, respectively) (table 1). No significant differences regarding the characteristics of relatives were found between the preintervention and postintervention periods. Similar results were found in the per-protocol analyses.
No significant differences were found in relatives’ appreciation of communication characteristics between the pre-PCP and post-PCP period. According to relatives, most patients had been told they had an incurable illness in the presence of a relative (88% and 85%, in pre-PCP and post-PCP period, respectively) and most patients had discussed their preferences EOL treatment (82% and 76%, respectively). Relatives also reported that 14% of the patients in the pre-PCP period and 13% in the post-PCP period had needed more discussion about their preferences; 12% and 13% of the relatives, respectively, were not sure whether the patients had needed more discussion. For more than half of the patients in both groups the message of having an incurable disease had been discussed more than 3 months before death. Most relatives (79% and 79%, respectively) had been able to find out all they wanted to know about the illness of their loved ones, but for 25% and 29% of the relatives, respectively, more detailed information had been desirable. In both periods, most relatives had been involved with decisions about their loved one’s care and were satisfied with their involvement. Furthermore, the majority had been told their loved one was likely to die (86% and 82%, respectively), with two-thirds being satisfied with how this was told (68% and 71%, respectively) (table 2). In the per-protocol analysis, more relatives had been told their loved ones were likely to die in the post-PCP period compared with the pre-PCP period (86% and 90% respectively, p=0.042).
Place of death and bereavement support for relatives
Two-thirds of the patients had died at their preferred place of death (66% and 58%, respectively) and the majority of relatives felt the place of death had been the right place (88% and 85%, respectively (table 3)). Around a quarter of the relatives in both groups had spoken with a hospital healthcare professional after the death of their loved ones; 18% of the relatives in the pre-PCP period and 21% of the relatives in the post-PCP period would have appreciated a conversation with a healthcare professional in the hospital after the death of their loved one. One-third of the relatives in both groups had great difficulty to cope with sorrow and to focus on other activities. The majority received (amply) sufficient help from family and friends (93% and 91%, respectively). A small percentage (10% and 8%, respectively) of the relatives had needed help or support from health and/or social services after the death of the patient (table 3). Differences between the pre- and post-PCP period were not significant and similar results were found in the per-protocol analyses.
Satisfaction with hospital care
The median score for general satisfaction with hospital care was 75 in both the pre-PCP and post-PCP period. Satisfaction scores were lowest for doctors’ availability, waiting time in general, hospital access and exchange of information (median scores on all four items 50 and 50, respectively). Satisfaction scores with the exchange of information were lower in the post-PCP period (p=0.042). Satisfaction scores were highest for nurses’ technical skills (75 and 71, respectively), nurses’ interpersonal skills (75 and 67, respectively) and for general satisfaction (75 and 75, respectively) (table 4). Similar results were found in the per-protocol analyses.
This study evaluated the effect of implementing a PCP on bereaved relatives’ experiences of communication and their satisfaction with EOL care. We found that bereaved relatives reported quite positively about communication and satisfaction with care even before implementation, and that their experience did not further improve after implementation of the PCP.
In the pre-PCP period, 92% of all patients had been told they had an incurable illness and 82% had discussed their preferences for EOL treatment. In our study, communication practices in the pre-PCP period were comparable to practices after interventions to improve EOL or ACP conversations in several randomised controlled trials.24–26 Timely discussing patients’ prognosis and EOL issues, preferably in the presence of a relative, is considered an important element of ACP and high-quality palliative care.1 2 In our study, EOL discussions mostly took place in the presence of a relative (about 85% in both groups) and for a third of the patients this occurred at least 1 year before death. Most relatives were pleased with their involvement in decision-making about their loved one’s care in both periods. In other studies, diagnosis and EOL issues are less often explicitly addressed, and also less frequently discussed in the presence of a relative.27 28 In a survey in seven countries of physicians’ intentions regarding discussing prognosis with terminally ill patients with cancer and their relatives, training in palliative care and a younger age of the physician were found to be associated with an active intention to discuss prognosis.27 The relatively high involvement of relatives in SDM in our study might be associated with a relatively young age of physicians at the participating departments, as well ass a pre-existing policy to promote palliative care.
To support bereaved relatives in coping with grief after the death of a loved one, an aftercare discussion with the involved healthcare professional can be helpful.29 In addition to closure, such discussions can also identify relatives with long-term grief disorders who should be referred to formal grief support services.29 30 In our study, aftercare discussions in the hospital occurred in approximately 25% of all cases in both groups; the majority of bereaved relatives were helped by these discussions. About 20% in both groups would have appreciated an aftercare discussion. A recent study of grief care focussing on support after a death in the hospital found that this care was provided ad hoc, based on the good will of individual staff members.30 This service should be offered routinely to optimise the quality and consistency of bereavement care.
We found that bereaved relatives were reasonably satisfied with the care as received in the pre-PCP and the post-PCP period, with a median score of 75 (range: 0–100). Bereaved relatives’ satisfaction was lowest for doctors’ availability, waiting time in general, hospital access and exchange of information. Comparison with other studies is difficult since the IN-PATSAT32 Questionnaire is generally used to assess satisfaction of care of hospitalised patients.14 16 31 However, since information exchange between different care settings is important for the continuity of care, especially at EOL, improvement trajectories seem to be required.32
Strengths and limitations
This study has several strengths: it is the first prospective preintervention and postintervention study in the daily practice on an inpatient and outpatient clinic for oncology patients where a standardised digital PCP was implemented, supporting healthcare professionals not specialised in palliative care in providing structured palliative care and the initiation of ACP conversations. We have measured the communication process and satisfaction with care at EOL from a bereaved relatives perspective with two validated questionnaires (VOICES and IN-PATSAT32).14 19 Yet, the IN-PATSAT32 was validated to measure inpatients’ satisfaction with care, whereas we used it to measure bereaved relatives’ perspectives even though it has not been validated for this purpose. In future research, validation of the IN-PATSAT 32 questionnaire to assess relatives’ perspectives of care could be considered.
A limitation of the study concerns the background of the included patients and their relatives. Mainly relatives with a Catholic/Protestant religious background responded, even though we invited all bereaved relatives of patients fulfilling the inclusion criteria. We expected more diversity in their backgrounds since our hospital is situated in an urban area with a diverse population. What is perceived as high-quality palliative care may vary based on people’s religious backgrounds and cultural values.33 For future research more diversity is needed with participants with diverse religious and ethnic backgrounds whose primary language may not be the dominant language in the country where the study is performed.34
Implementation of the PCP in a large teaching hospital did not improve communication, including SDM and ACP conversations, or satisfaction with care at the EOL as experienced by bereaved relatives. However, communication and quality of care were experienced as rather good before the implementation of the PCP. This suggests a pre-existing awareness of the importance of high-quality palliative care, probably created by a previously deployed policy in the hospital to promote palliative care. Exchange of information between different health care professionals remains an area of attention, as bereaved relatives were least satisfied with this aspect of the care provided.
Data availability statement
The data of this study are kept by AP and are available upon reasonable request.
Patient consent for publication
This study was conducted in accordance with the Declaration of Helsinki and was approved by the Medical Ethical Research Committee of the Maasstad Hospital (TWOR 2013/51). Netherlands Trial Register; clinical trial number: NL4400 (NTR4597); date registered: 27-04-2014.
The authors would like to thank K Mataw and M Pruijsten for data collection and entry; H Sprokkop-Janssen for secretarial support; and C de Hoog, E Zijp, HJ van Esch, I Rietveld and H Penders for translation of the questionnaires according EORTC guidelines.
Contributors AvdP-P is principal investigator and conceived the study together with ML, CCDvdR and AvdH. Data were analysed by AvdP-P and EO-dH and they interpreted the results together with ML, CCDvdR and AvdH. AvdP-P drafted the manuscript and all authors read and, edited draft versions and approved the final version. AvdP-P is the guarantor.
Funding The authors have not declared a specific grant for this research from any funding agency in the public, commercial or not-for-profit sectors.
Competing interests CCDvdR received consulting fees from Lilly Nederland BV (via her institution) and (grants from the Netherlands Organization for Health Research and Development and from the Dutch Cancer Society for work outside the submitted work.
Provenance and peer review Not commissioned; externally peer reviewed.
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