Research focusing on quality of life (QoL) in children and adolescents with high-risk malignancy (HRM) is of primary importance. As most of these patients are treated in low and middle income countries1, publications from Central America are of great value. We are thankful to Salaverria et al. for their work addressing this complex and key subject2.
Patients with HRM were defined by Mahmood et al. as having more than 50% risk of death due to their disease. These patients should receive optimal symptoms management and optimal disease directed therapies to increase both their survival and QoL. To achieve this, the intervention of a specialized pediatric palliative care (PPC) team was proven feasible and effective3, 4. PPC is as a holistic approach that does not exclude cancer directed care and should include the best chemotherapy regimen aiming at optimal QoL and life expectancy.
Salaverria et al. described a prospective cohort of 60 patients suffering from relapsed or refractory leukemia. 44 patients of them died, 39 of whom due to leukemia progression. All Enrolled patients were prospectively followed and assessed for self or proxy-reported QoL with a nearly exhaustive data collection. These results give us a very precise and unprecedented insight into HRM patients’ QoL.
In this sample, all patients received chemotherapy, 65% of patients received specialized PPC at inclusion and 79.5% received specialized PPC in the last month of life. Initial curative in...
Research focusing on quality of life (QoL) in children and adolescents with high-risk malignancy (HRM) is of primary importance. As most of these patients are treated in low and middle income countries1, publications from Central America are of great value. We are thankful to Salaverria et al. for their work addressing this complex and key subject2.
Patients with HRM were defined by Mahmood et al. as having more than 50% risk of death due to their disease. These patients should receive optimal symptoms management and optimal disease directed therapies to increase both their survival and QoL. To achieve this, the intervention of a specialized pediatric palliative care (PPC) team was proven feasible and effective3, 4. PPC is as a holistic approach that does not exclude cancer directed care and should include the best chemotherapy regimen aiming at optimal QoL and life expectancy.
Salaverria et al. described a prospective cohort of 60 patients suffering from relapsed or refractory leukemia. 44 patients of them died, 39 of whom due to leukemia progression. All Enrolled patients were prospectively followed and assessed for self or proxy-reported QoL with a nearly exhaustive data collection. These results give us a very precise and unprecedented insight into HRM patients’ QoL.
In this sample, all patients received chemotherapy, 65% of patients received specialized PPC at inclusion and 79.5% received specialized PPC in the last month of life. Initial curative intent was associated with improved physical health, pain and fatigue. Given these results, it appears that curative regimen also represented the optimal palliative chemotherapy!
The authors state that favorable outcomes of patients treated with curative intent could be explained by a selection bias leading to enroll more vulnerable patients in the palliative intent treatment. This is indeed supported by the results showing more acute myeloid leukemia, refractory diseases and earlier relapses in the palliative intent arm. Characteristics of acute lymphoblastic leukemia relapses (i.e. bone marrow or central nervous system involvement), first line treatment or performance status at enrollment were not described although these could represent confounding factors.
This work represents a unique contribution to our knowledge about PPC recipients for leukemia. However, we would like to discuss the author’s conclusion that “curative approach may be a reasonable option for patients with acute leukemia even when prognosis is poor”. Disease burden and treatment toxicity may represent more important determinants of QoL than the physician intent.
We would rather advocate that there should be no situation in which physicians should choose between palliative care and effective chemotherapy. Further research is needed to optimize and personalize the treatment plan for patients with advanced hematological malignancies.
1 - Atun R, Bhakta N, Denburg A, et al. Sustainable care for children with cancer: a Lancet Oncology Commission. Lancet Oncol. 2020;21(4):e185-e224. doi:10.1016/S1470-2045(20)30022-X
2 - Salaverria C, Plenert E, Vasquez R, Fuentes-Alabi S, Tomlinson GA, Sung L. Paediatric relapsed acute leukaemia: curative intent chemotherapy improves quality of life [published online ahead of print, 2021 Jan 17]. BMJ Support Palliat Care. 2021;bmjspcare-2020-002722. doi:10.1136/bmjspcare-2020-002722
3 - Mahmood LA, Casey D, Dolan JG, Dozier AM, Korones DN. Feasibility of Early Palliative Care Consultation for Children With High-Risk Malignancies. Pediatr Blood Cancer. 2016;63(8):1419-1422. doi:10.1002/pbc.26024
4 - Kaye EC, Friebert S, Baker JN. Early Integration of Palliative Care for Children with High-Risk Cancer and Their Families. Pediatr Blood Cancer. 2016;63(4):593-597. doi:10.1002/pbc.25848
We read with particular interest the recent systematic review and narrative synthesis of clinically assisted hydration in the last days of life [1]. Unsurprisingly, the authors concluded that “there is currently insufficient evidence to draw firm conclusions on the impact of CAH in the last days of life”, which supports the findings of previous reviews [2,3]. We agree with their conclusion, but would like to make some comments on the “quality” / applicability of some of the included (and excluded) studies.
Our concerns relate to:
1. Study type – end-of-life care should be evidence based, and the “gold standard” remains the randomised controlled trial (RCT).
2. Study population – our study [4] excluded patients with dehydration (and with contraindications to CAH), but the Cerchetti et al RCT [5] involved patients with dehydration and renal failure, and the “excluded” Bruera et al RCT [6] specifically involved patients with dehydration. Hence, there is an issue about collating these data, and, importantly, extrapolating these data to the wider population.
3. Study intervention – our study [4] used a variable volume of fluid, based on the patient’s weight (and in accordance with NICE guidance) [7], but the Cerchetti et al RCT [5], and the Bruera et al RCT [6], both used a fixed volume of fluid (e.g. 1 L / day). The rationale for this volume of fluid is unexplained, but it is much less than recommended for maintenance of hydration...
We read with particular interest the recent systematic review and narrative synthesis of clinically assisted hydration in the last days of life [1]. Unsurprisingly, the authors concluded that “there is currently insufficient evidence to draw firm conclusions on the impact of CAH in the last days of life”, which supports the findings of previous reviews [2,3]. We agree with their conclusion, but would like to make some comments on the “quality” / applicability of some of the included (and excluded) studies.
Our concerns relate to:
1. Study type – end-of-life care should be evidence based, and the “gold standard” remains the randomised controlled trial (RCT).
2. Study population – our study [4] excluded patients with dehydration (and with contraindications to CAH), but the Cerchetti et al RCT [5] involved patients with dehydration and renal failure, and the “excluded” Bruera et al RCT [6] specifically involved patients with dehydration. Hence, there is an issue about collating these data, and, importantly, extrapolating these data to the wider population.
3. Study intervention – our study [4] used a variable volume of fluid, based on the patient’s weight (and in accordance with NICE guidance) [7], but the Cerchetti et al RCT [5], and the Bruera et al RCT [6], both used a fixed volume of fluid (e.g. 1 L / day). The rationale for this volume of fluid is unexplained, but it is much less than recommended for maintenance of hydration (let alone treatment of dehydration) by NICE. So, again there is an issue about collating these data.
4. Study duration – end-of-life studies should follow up the patient until death, since related problems are often more prevalent closer to death (e.g. “terminal agitation”, audible upper airway secretions), and survival has to be a major outcome.
Finally, we agree with the authors’ assertion that “definitive studies are urgently needed to determine whether CAH has any impact on patients’ survival or symptoms”. However, such studies are expensive, and our failure to undertake a definitive study relates to a lack of funding (and not a lack of willing)!
[1]. Kingdon A, Spathis A, Brodrick R et al. What is the impact of clinically assisted hydration in the last days of life? A systematic literature review and narrative synthesis. BMJ Support Palliat Care 2021; 11: 68-74.
[2]. Good P, Richard R, Syrmis W et al. Medically assisted hydration for adult palliative care patients. Cochrane Database of Systematic Reviews 2014, Issue 4. Art. No.: CD006273.
[4]. Davies AN, Waghorn M, Webber K et al. A cluster randomised feasibility trial of clinically assisted hydration in cancer patients in the last days of life. Palliat Med 2018; 32: 733-43.
[5]. Cerchietti L, Navigante A, Sauri A et al. Hypodermoclysis for control of dehydration in terminal-stage cancer. International Journal of Palliative Nursing 2000; 6: 370-4.
[6]. Bruera E, Hui D, Dalal S et al. Parenteral hydration in patients with advanced cancer: a multicenter, double-blind, placebo-controlled randomized trial. J Clin Oncol 2013; 31: 111-8.
[7]. National Institute for Health and Care Excellence. Intravenous fluid therapy in adults in hospital; 2013 (updated 2017). Available at: http://guidance.nice.org.uk/CG174 [Accessed 31 March 2021]
To the Editor. With interest we read the paper by Boddaert et al. [1] about quality of end-of-life cancer care in The Netherlands and recommend the authors with their work. Quality of end-of-life care is of great importance to both patient and relatives. Inappropriate interventions during the disease, certainly in the last 30 days of life, are undesirable. We agree to the benefit of a multifactorial approach in palliative care.
Nevertheless, we have concerns about the use of the term “inappropriate care”, which was used abundantly to describe systemic anti-tumour treatment during the last 30 days of life. Treatment for patients with incurable malignancies aims to achieve two goals: optimization of the overall survival time and of quality of life. Boddaert et al focused on a small part of this complex care. Also, quantification of quality of end-of-life-care is hard, with measurable, but suboptimal indicators as place of death, systemic anti-tumour therapy during the last 30 days of life and consultation of palliative care specialists as used in this paper.
Unfortunately, there is no optimum set for any of the indicators of (in-)appropriate care in the last 30 days of life. To aim for an as low as possible number of patients receiving systemic anti-tumour therapy during the last 30 days of their life, should not be a goal on itself. End-of-life care that actively defers from anti-tumour treatment can be potentially inappropriate too [2] and systemic treatme...
To the Editor. With interest we read the paper by Boddaert et al. [1] about quality of end-of-life cancer care in The Netherlands and recommend the authors with their work. Quality of end-of-life care is of great importance to both patient and relatives. Inappropriate interventions during the disease, certainly in the last 30 days of life, are undesirable. We agree to the benefit of a multifactorial approach in palliative care.
Nevertheless, we have concerns about the use of the term “inappropriate care”, which was used abundantly to describe systemic anti-tumour treatment during the last 30 days of life. Treatment for patients with incurable malignancies aims to achieve two goals: optimization of the overall survival time and of quality of life. Boddaert et al focused on a small part of this complex care. Also, quantification of quality of end-of-life-care is hard, with measurable, but suboptimal indicators as place of death, systemic anti-tumour therapy during the last 30 days of life and consultation of palliative care specialists as used in this paper.
Unfortunately, there is no optimum set for any of the indicators of (in-)appropriate care in the last 30 days of life. To aim for an as low as possible number of patients receiving systemic anti-tumour therapy during the last 30 days of their life, should not be a goal on itself. End-of-life care that actively defers from anti-tumour treatment can be potentially inappropriate too [2] and systemic treatment that has been prescribed to patients in a good performance and fit for therapy according to international study standard might decease within 30 days after the last dose of chemotherapy [3]. Weighing the pros and cons of palliative systemic treatment with the patient seems key in finding the treatment solutions for individual patients. Whether the optimal balance is found by individual clinicians might be appraised by comparison with other clinicians and clinics in similar situations.
We plea for deletion of the term inappropriate in relation to tumor-directed therapy as part of end-of-life care, as renouncing tumor-directed therapy might be as inappropriate. If palliative systemic treatment is started under conditions as stated in (international) standards, inevitably some patients will die within 30days.
References:
1. Boddaert, M.S., et al., Inappropriate end-of-life cancer care in a generalist and specialist palliative care model: a nationwide retrospective population-based observational study. BMJ Support Palliat Care, 2020.
2. Neuberger, J., C. Guthrie, and D. Aaronovitch, More care, less pathway: a review of the Liverpool Care Pathway. Department of Health, 2013.
3. Burgers, J.A. and R.A. Damhuis, 30-day mortality after the start of systemic anticancer therapy for lung cancer: is it really a useful performance indicator? ERJ Open Res, 2018. 4(4).
Dear Editor,
We read with great interest the article by Curry et al. on the outcomes after venting gastro-/jejunostomy from our own institution.
While venting gastrostomy has a potentially important role to play in cancer palliation, it is offered in only approximately 60% of UK centres. The outcome and patient experience is highly dependent on good tube function. Continuous decompression of the stomach and upper small bowel is essential to alleviate symptoms and stop the development of complications.
Little is published on the technical aspects of the procedure, how to undertake this safely and what the requirements for patient selection and aftercare are. Would the authors please be so kind, as to provide some technical detail to guide the readership?
To our knowledge there are no licensed devices for this purpose. What type of tubes did the authors review (push-PEGs +/- jejunal extension, G-tubes with gastropexy, gastrojejunostomy or transgastric jejunostomy tubes), what was the experience of 4-point gastropexy for GJ-tubes and what size was do they recommend to achieve adequate drainage, bearing in mind that balloon-retained silicone tubes have a much smaller inner lumen than polyurethane PEG tubes?
Our attempts using 20Fr push-PEG tubes led to very poor patient experience, which has been improved by switching to gastro-jejunostomy tubes, as they achieve better drainage due accessing the fluid in the duodenum rather than in the stomach, we...
Dear Editor,
We read with great interest the article by Curry et al. on the outcomes after venting gastro-/jejunostomy from our own institution.
While venting gastrostomy has a potentially important role to play in cancer palliation, it is offered in only approximately 60% of UK centres. The outcome and patient experience is highly dependent on good tube function. Continuous decompression of the stomach and upper small bowel is essential to alleviate symptoms and stop the development of complications.
Little is published on the technical aspects of the procedure, how to undertake this safely and what the requirements for patient selection and aftercare are. Would the authors please be so kind, as to provide some technical detail to guide the readership?
To our knowledge there are no licensed devices for this purpose. What type of tubes did the authors review (push-PEGs +/- jejunal extension, G-tubes with gastropexy, gastrojejunostomy or transgastric jejunostomy tubes), what was the experience of 4-point gastropexy for GJ-tubes and what size was do they recommend to achieve adequate drainage, bearing in mind that balloon-retained silicone tubes have a much smaller inner lumen than polyurethane PEG tubes?
Our attempts using 20Fr push-PEG tubes led to very poor patient experience, which has been improved by switching to gastro-jejunostomy tubes, as they achieve better drainage due accessing the fluid in the duodenum rather than in the stomach, were it can cause nausea, biliary gastritis, reflux and aspiration, notably in the supine position. However GJ-tubes are much more demanding in terms of tube maintenance. The title suggests that outcome of both types were assessed – could the authors’ please elaborate on the differences reported by patients and can one be recommended over the other?
The introduction of the Enfit standard has resulted in additional problems with the connectors reducing flow and causing obstruction, and patients having difficulties obtaining matching drainage bags. This is proving such a problem that we are considering suspending this procedure. What advice do the authors have?
Malignant bowel obstruction precludes the administration of oral contrast and it is frequently associated with large-volume ascites, which can result in debilitating leakage. What method was used to identify the colon during the procedure and how is co-existing ascites managed?
In our experience patient selection and counselling is crucial. Patients – and indeed the referring team – rarely fully understand that the patient is limited to a comfort-based intake of fluids and requires additional parenteral nutrition. Leakage of gastric content is a frequent problem, leading to skin excoriation and break down of the peri-stomal tissues, which blights patients’ lives if not checked rapidly. “Infection” should be treated in the first instance with topical creams combining an appropriate antibiotic / antifungal and a steroid after a wound swab and culture, not with systemic antibiotics. We routinely apply an alginate (Flaminal Hydro, Flen Health, London, UK) for two weeks after the procedure to promote healing and reduce the risk of infection, and offer an open-accesss drop-in clinic for all gastrostomy patients. Do the authors’ have any advice for post-procedural wound care, which is crucial in reducing complications?
What were the lessons learned from tubes “falling out” and how were these managed? In contrast to gastrostomy, gastro-jejunostomy catheters require image-guidance to be reintroduced into the duodenum.
Hoping to be referenced in future projects that were designed collaboratively,
Sincerely,
The Christie Interventional Radiology Team
To the editor
We commend Twose et al for their qualitative study conducted with sixteen patients who had therapeutic thoracocentesis for malignant pleural effusions (MPE)1. Respiratory symptoms improved while constitutional symptoms did not; and even though symptomatic benefit was only for a matter of days, patients thought that it was worth any discomfort.
We conducted a similar study with patients with MPE who were identified by the pleural team at a large district general hospital. Patients were interviewed four weeks after a talc pleurodesis or placement of an in-dwelling pleural catheter (IPC). An IPC is a plastic tube which can be placed during a day case procedure and allows intermittent fluid drainage in the community.
A semi-structured electronically recorded interview was conducted by a researcher following a topic guide and, once transcribed, the transcripts were reviewed using thematic analysis by the researchers.
Some of our results echo those of Twose et al. We had a male and mesothelioma preponderance with our participants – 8 of 10 were male and 6 had mesothelioma. Thoracocentesis was the initial pleural instrumentation for all (some therapeutic, some diagnostic) but subsequently 9 of 10 had an IPC and 6 of 10 had attempted talc pleurodesis (some had both). Pre-procedure symptoms were respiratory and constitutional, and for some thoracocentesis was uncomfortable. Where our study differs is the additional data with regard to patient...
To the editor
We commend Twose et al for their qualitative study conducted with sixteen patients who had therapeutic thoracocentesis for malignant pleural effusions (MPE)1. Respiratory symptoms improved while constitutional symptoms did not; and even though symptomatic benefit was only for a matter of days, patients thought that it was worth any discomfort.
We conducted a similar study with patients with MPE who were identified by the pleural team at a large district general hospital. Patients were interviewed four weeks after a talc pleurodesis or placement of an in-dwelling pleural catheter (IPC). An IPC is a plastic tube which can be placed during a day case procedure and allows intermittent fluid drainage in the community.
A semi-structured electronically recorded interview was conducted by a researcher following a topic guide and, once transcribed, the transcripts were reviewed using thematic analysis by the researchers.
Some of our results echo those of Twose et al. We had a male and mesothelioma preponderance with our participants – 8 of 10 were male and 6 had mesothelioma. Thoracocentesis was the initial pleural instrumentation for all (some therapeutic, some diagnostic) but subsequently 9 of 10 had an IPC and 6 of 10 had attempted talc pleurodesis (some had both). Pre-procedure symptoms were respiratory and constitutional, and for some thoracocentesis was uncomfortable. Where our study differs is the additional data with regard to patients undergoing IPC and pleurodesis.
In general IPC placement was well tolerated and patients liked that having an IPC meant that there was no need to return to hospital for further thoracocentesis. Care at home, with the support of District Nurses was greatly appreciated, but there were occasional frustrations. For some, placement of an IPC led to a gradual reduction of fluid drainage and pleurodesis leading to tube removal. . For some, subsequent tube removal did not change quality of life, for others it felt liberating.
For those undergoing chest drain and pleurodesis, there was some dissatisfaction that this necessitated a hospital stay and the chest drain bottle was inconvenient, but improvements in quality of life were worth the effort. We asked patients to reflect on the journey they had taken and whether they would have chosen the same pleural interventions again (multiple therapeutic thoracocenteses versus pleurodesis or IPC). Patients fell into two categories: those who thought that the decision should be made by the medical team and those who were keen for a particular option such as IPC or intermittent drainage.
Conclusions
While our findings with regards to removal of pleural fluid are similar to Twose et al’s, our data give some interesting insights into the experiences of patients who have undergone IPC or pleurodesis. Both procedures have burdens and benefits and it is important that patients are guided by clinicians so that they can make informed choices with regards to treatments.
Table 1: Perceptions of patients after IPC placement or talc pleurodesis
Perception of patient Exemplar quote(s)
IPC
Placement was generally well tolerated “I just felt pushing.” (Patient 1)
“It wasn’t very pleasant, but it was pain-free, it was just a lot of, sort of, faffing position-wise, and pushing, and shoving, and prodding…” (Patient 7)
No need to return to hospital “I wouldn’t want to stay in hospital unless I really had to.” (Patient 1)
Community support “…there was a hiccup the first weekend, the district nurses didn’t turn up.” (Patient 6)
IPC leading to pleurodesis Initially, it was every couple of days, but now, for the last few weeks, or even four weeks, it’s been weekly” (Patient 5)
Talc Pleurodesis
Inconvenience Interviewer: “And for the sake of coming into hospital and spending days in hospital was that transformation sort of worth it?”
Respondent: “Oh very definitely, yeah, yeah.” (Patient 4)“I don’t recall any particular pain from it, it was just the fact you wanted to go to the loo you’ve got to somehow drag this bucket around with you.” (Patient 4)
Decision making
Medical team lead on decision making “Medical people, they should know which you need most.” (Patient 2)
Patient taking lead on decision making “…you may have to have regular visits all the time, and that means, you know, constant interference. I mean, it’s not the most pleasant experience, and there’s a degree of pain in it…You need something a bit more permanent…” (Patient 5)
REFERENCES
1 Twose C, Ferris R, Wilson A, et al. Therapeutic thoracentesis symptoms and activity: a qualitative study. BMJ Supportive & Palliative Care 2021 doi:10.1136/ bmjspcare-2020-002584
ACKNOWLEDGEMENTS
We are grateful to the patients who participated in this study.
CONTRIBUTORS
PP conceived the study. RJ, HS and NP made substantial contribution to its design. RJ collected the data. All authors contributed to the analysis and interpretation of the data and critically revised drafts of the paper. They also read and approved the final version of the manuscript. PP is the guarantor.
FUNDING
Funding for this study was received from the Gloucestershire Hospitals Chest Fund and the Gloucestershire Hospitals NHS Foundation Trust Research and Innovation Forum Fund.
COMPETING INTERESTS
All authors have completed the Unified Competing Interests form at http://www.icmje.org/coi_disclosure.pdf (available on request from the corresponding author). There are no competing interests.
APPROVALS/ETHICS
The study was approved by Gloucestershire Research Support Service, the Sue Ryder Research Governance Group, the National Research Ethics Service Committee West Midlands (REC Reference 16/WM/0222).
PROVENANCE AND PEER REVIEW
Not commissioned; externally peer reviewed.
DATA SHARING STATEMENT
Unpublished data are held by Sue Ryder Leckhampton Court Hospice.
Title: Cannabinoids impact on insomniacs with chronic pain: how cautious we should be?
This correspondence provides a comment on the recent review article by Humer et al. (Int. J. Mol. Sci. 2020, 21(19), 7244; https://doi.org/10.3390/ijms21197244)
Dear Editor,
From the results of a recent cross-sectional study on patients with insomnia and chronic pain, published in the BMJ Support Palliat Care, Sznitman and colleagues have suggested that Medicinal Cannabis (MC) could have positive effects in sleep maintenance of patients experiencing chronic pain. Since both conditions, insomnia and chronic pain play an important role in the clinical arena, either related to their impact on the quality of life and associated comorbidities, but also because both have high rates of prevalence among the world population. This is a highly relevant finding, however, we believe that it deserves further consideration.
Although insomnia majorly affects patients seeking care in clinics managing patients complaining of persistent pain1, other sleep conditions as obstructive sleep apnea (OSA) could also prevail in similar circumstances2. In fact, comorbid insomnia with sleep apnea (COMISA) frequently occurs and may lead to a more cautious clinical approach since this comorbid condition might have different etiological, pathophysiological, diagnostic, and therapeutic implications. Either Insomnia1 or OSA increases with age, wi...
Title: Cannabinoids impact on insomniacs with chronic pain: how cautious we should be?
This correspondence provides a comment on the recent review article by Humer et al. (Int. J. Mol. Sci. 2020, 21(19), 7244; https://doi.org/10.3390/ijms21197244)
Dear Editor,
From the results of a recent cross-sectional study on patients with insomnia and chronic pain, published in the BMJ Support Palliat Care, Sznitman and colleagues have suggested that Medicinal Cannabis (MC) could have positive effects in sleep maintenance of patients experiencing chronic pain. Since both conditions, insomnia and chronic pain play an important role in the clinical arena, either related to their impact on the quality of life and associated comorbidities, but also because both have high rates of prevalence among the world population. This is a highly relevant finding, however, we believe that it deserves further consideration.
Although insomnia majorly affects patients seeking care in clinics managing patients complaining of persistent pain1, other sleep conditions as obstructive sleep apnea (OSA) could also prevail in similar circumstances2. In fact, comorbid insomnia with sleep apnea (COMISA) frequently occurs and may lead to a more cautious clinical approach since this comorbid condition might have different etiological, pathophysiological, diagnostic, and therapeutic implications. Either Insomnia1 or OSA increases with age, with a possible co-occurrence of up to 67%2 during the lifetime. In this context, given the probability of a misdiagnosis, both conditions should be carefully accessed whenever managing patients with pain-related complaints, mainly those in the middle-age group. Although, with some important constraints, cannabis-based medicines are being used for many years, showing benefits in different aspects of pain-related conditions. Interestingly, in a survey conducted by Nicholson et al. (2004), the authors found some evidence of increased sleepiness and changes in the mood of OSA patients using some forms of MC3. Also, when assessing international data basis, Mu-Chen et al. (2011), described an increased rate of motor vehicle accidents among marijuana users, especially chronic users4. On the other hand, long-term opioid therapy, a risky approach for OSA patients, has been commonly prescribed for chronic pain patients, including those within the higher age group5. Conversely, it is known that in OSA patients, the control of the sleep-related respiratory dysfunction positively impacts pain complaints and the need for opioids but a recent paradoxical finding with potential relevance for either those patients with chronic pain and insomnia, OSA or COMISA, showed that certain benzodiazepine sedatives induced a mild respiratory depression but paradoxically reduced sleep apnea risk and severity by increasing the respiratory arousal threshold5. So, we should be very cautious when assuming the benefits of MC in insomnia in such patient. Maybe we should be aware of the possible comorbid occurrence (COMISA), the complexity of insomnia phenotypic characterization, and its potentially major role in guiding clinical practice.
This survey is funded by CNPq, granting number: 126739/2020-0.
References:
1. Meira E Cruz M, Lukic N, Wojczynska A, Steiger B, Guimarães AS, Ettlin DA. Insomnia in Patients Seeking Care at an Orofacial Pain Unit. Front Neurol. 2019;10:542. Published 2019 May 28. doi:10.3389/fneur.2019.00542
2. Sweetman A, Lack L, Bastien C. Co-Morbid Insomnia and Sleep Apnea (COMISA): Prevalence, Consequences, Methodological Considerations, and Recent Randomized Controlled Trials. Brain Sci. 2019;9(12):371. Published 2019 Dec 12. doi:10.3390/brainsci9120371
3. Boyaji S, Merkow J, Elman RNM, Kaye AD, Yong RJ, Urman RD. The Role of Cannabidiol (CBD) in Chronic Pain Management: An Assessment of Current Evidence. Curr Pain Headache Rep. 2020 Jan 24;24(2):4. doi: 10.1007/s11916-020-0835-4. PMID: 31980957.
4. Nicholson AN, Turner C, Stone BM, Robson PJ. Effect of Δ-9-tetrahydrocannabinol and cannabidiol on nocturnal sleep and early-morning behavior in young adults. J Clin Psychopharmacol. 2004;24(3):305–13.
5. Mir S, Wong J, Ryan CM, et al. Concomitant benzodiazepine and opioids decrease sleep apnoea risk in chronic pain patients. ERJ Open Res. 2020;6(3):00093-2020. Published 2020 Aug 25. doi:10.1183/23120541.00093-2020
Interesting reading the article by Sutherland et al [1] on the use of video consultations in palliative care. As a clinician, as an user and advocate of video consultations I entirely agree that telehealth can and must be used as one of the tools of our disposal to be more efficient looking after our patients. There is no doubt workload is a trigger for new models of care.
Nevertheless, the pandemic has not only triggered an explosion in video consultations due to the need to minimise the risk of infection but a change in law in the United Kingdom that allows its full use, as in this country the death certificate includes the statement “Last seen alive by me …. ” and up to now there was a need to see the patient face to face within the last two weeks before death. Now, it is possible to have seen the patient within the last four weeks, and video consultations are considered as an option to face-to-face consultations.
It is argued there will be no return to the old norm, and that many changes brought by the pandemic will remain after it passes. It is hoped telemedicine expansion will remain, but in palliative medicine it will only do if the law changes remain in place.
References
1. Sutherland AE, Stickland J, Wee B. Can video consultations replace face-to-face interviews? Palliative medicine and the Covid-19 pandemic: rapid review. BMJ Supportive & Palliative Care 2020;10:271-275.
I read with interest the paper titled ‘The liminal space palliative care volunteers occupy and their roles within it: a qualitative study’ by Vanderstichelen et al (1) which reported on volunteers who care for terminally ill people. I consider that the authors’ conclusion that these volunteers occupy a liminal space ‘betwixt and between’ staff and family members may be drawn from an incomplete understanding of Turner’s (2) concept of liminality.
The term derives from limen meaning threshold and is used to denote moving across a boundary from one state to another. The model involves three stages: separation, transition (the liminal phase) and (re-) incorporation. Examples include changes in status, such as getting married or gaining majority, or in life-stage, such as birth and death.
I argue that Vanderstichelen et al’s consideration that these volunteers occupy a liminal space ‘betwixt and between’ staff and family members since they provide care which includes aspects of that given by both these ‘conceptually rigid and mutually exclusive domains’ (p. 9) shows that the volunteer role here is ambiguous rather than liminal. While ambiguity is a core feature of liminality as described by Turner and can be applied to the volunteer role – for example, when there are unclear boundaries between volunteer and paid staff roles (3) - the presence of this feature alone does not make the role liminal.
I acknowledge liminality has been used in some organisational li...
I read with interest the paper titled ‘The liminal space palliative care volunteers occupy and their roles within it: a qualitative study’ by Vanderstichelen et al (1) which reported on volunteers who care for terminally ill people. I consider that the authors’ conclusion that these volunteers occupy a liminal space ‘betwixt and between’ staff and family members may be drawn from an incomplete understanding of Turner’s (2) concept of liminality.
The term derives from limen meaning threshold and is used to denote moving across a boundary from one state to another. The model involves three stages: separation, transition (the liminal phase) and (re-) incorporation. Examples include changes in status, such as getting married or gaining majority, or in life-stage, such as birth and death.
I argue that Vanderstichelen et al’s consideration that these volunteers occupy a liminal space ‘betwixt and between’ staff and family members since they provide care which includes aspects of that given by both these ‘conceptually rigid and mutually exclusive domains’ (p. 9) shows that the volunteer role here is ambiguous rather than liminal. While ambiguity is a core feature of liminality as described by Turner and can be applied to the volunteer role – for example, when there are unclear boundaries between volunteer and paid staff roles (3) - the presence of this feature alone does not make the role liminal.
I acknowledge liminality has been used in some organisational literature as a way of conceptualising a state where liminars are not one thing or another - for example, management consultants and temporary workers. (4, 5) However, the difference between this use and Vanderstichelen et al’s application of the concept to palliative care volunteers is that management consultants and temporary workers are categories of personnel who usually come and go within organisations. Volunteers meanwhile are typically a permanent actor group in palliative care settings borne out by my own research (an as yet unpublished ethnography of patient- and family-facing volunteers in two UK hospices) which showed volunteer roles were a well-defined part of the hospice organisational structure, with ‘job’ descriptions and subjected to specific volunteer policies.
The focus on Turner’s model is on status change which I argue is lacking in the volunteer role: volunteers are not ‘betwixt and between’ two statuses. Perhaps within the frame of an individual’s life story can it be argued that being a volunteer represents a liminal phase. For example, if volunteering is undertaken with a view towards gaining a place at medical school then the volunteer could be said to be ‘betwixt and between’ school pupil and medical student. However, Vanderstichelen et al’s focus is not on the identity construction of individual volunteers.
Therefore, while the role may be enacted in spaces where dying - a liminal state between living and death - is taking place, it itself is not liminal despite incorporating some of the characteristics of liminality, namely ambiguity (and possibly marginality). It is this clarification which is lacking in the paper.
1. Vanderstichelen S, Cohen J, Van Wesemael Y, et al. The liminal space palliative care volunteers occupy and their roles within it: A qualitative study. BMJ Support Palliat Care 2018. Published Online First: 07 December 2018. doi: 10.1136/bmjspcare-2018-001632
2. Turner V.W. The ritual process. Harmondsworth: Penguin Books; 1974.
3. Hoad P. Volunteers in the independent hospice movement. Sociol Health Illn 1991;13;231-48.
4. Czarniawska B, Mazza C. Consulting as a liminal space. Hum Relat 2003;56:267-90.
5. Garsten C. Betwixt and between: Temporary employees as liminal subjects in flexible organizations. Organization Studies, 1999;20:601-17.
We read with great interest the article by Centeno et al (2016) with regards to medical students’ experience of palliative care. [1] As medical students, who have recently experienced compulsory palliative care teaching during our 4th year, we wished to offer an insight into our experiences on its importance within the curriculum.
During pre-clinical years, there was a lack of emphasis on the holistic perspective of dying patients. The early attention on basic sciences can create the notion that medicine is oriented around ‘fixing people’, with little significance placed on the experience of dying. In the UK, the General Medical Council (GMC) provides guidelines for doctors on the ‘Treatment and care towards the end of life: good practice in decision making’. [2] Hence, a palliative care course is imperative, as it prepares medical students for one of the fundamental parts of medicine: respecting and nurturing the process of dying.
As part of our curriculum we have numerous palliative care days throughout the year. They involved visiting a hospice and speaking to patients, their families and staff, both individually, as well as in small groups. Throughout these days there are numerous activities that aid us to challenge and consider the process of dying. These involved reflective practices to allow students to consider their feelings if they were losing the most valued aspects of their life, as well as talks from family members about th...
We read with great interest the article by Centeno et al (2016) with regards to medical students’ experience of palliative care. [1] As medical students, who have recently experienced compulsory palliative care teaching during our 4th year, we wished to offer an insight into our experiences on its importance within the curriculum.
During pre-clinical years, there was a lack of emphasis on the holistic perspective of dying patients. The early attention on basic sciences can create the notion that medicine is oriented around ‘fixing people’, with little significance placed on the experience of dying. In the UK, the General Medical Council (GMC) provides guidelines for doctors on the ‘Treatment and care towards the end of life: good practice in decision making’. [2] Hence, a palliative care course is imperative, as it prepares medical students for one of the fundamental parts of medicine: respecting and nurturing the process of dying.
As part of our curriculum we have numerous palliative care days throughout the year. They involved visiting a hospice and speaking to patients, their families and staff, both individually, as well as in small groups. Throughout these days there are numerous activities that aid us to challenge and consider the process of dying. These involved reflective practices to allow students to consider their feelings if they were losing the most valued aspects of their life, as well as talks from family members about their experience of losing loved ones.
The hospice environment and nature of the feedback, discussion and reflection with the tutor can largely influence the outcome of the experience. Thus, the spectrum of experiences amongst students differs depending on these factors, yet we feel that the value of the exposure in a clinical setting cannot be undermined.
The success of the structure and organisation of palliative care teaching within University of Birmingham can be observed as multiple students embark on further experience within palliative care as part of the medical elective and selected career experience modules.
Moreover, the variety of environments within which palliative care occurs is far greater than most medical students assume. We have witnessed the roles of palliative care within primary care, acute medicine and hospice settings. However, we felt that the experience within a hospice, has a far greater impact on our education of palliative medicine. This could be attributed to the unified understanding of the holistic nature of palliative care within hospices that is not always explicitly evident in other medical settings.
In conclusion, we thank Centeno et al. for their work, and support the recommendation that a palliative care course should be a core component for all undergraduate students. The execution of this teaching is vital in successfully dispelling misconceptions of dying and harnessing our approach to ensure patients are holistically cared for in their final stages of life.
References:
1. Centeno C, Ballesteros M, Carrasco JM, Arantzamendi M. Does palliative care education matter to medical students? The experience of attending an undergraduate course in palliative care. BMJ Support Palliat Care. 2016 Mar;6(1):128-34
2. General Medical Council. Treatment and care towards the end of life: good practice in decision making. Available from: https://www.gmc-uk.org/-/media/documents/treatment-and-care-towards-the-... [Accessed 2019 Aug 12].
Dear Editor,
We read the editorial with interest. As they rightly observe, there are important problems prescribing anticipatory syringe drivers. However, we believe there are selected circumstances where it can be an important contribution to timely symptom management, provided all the following are true:
1. There is a foreseeable distressing circumstance that can be unambiguously identified by all of the health professionals seeing the patient (including those out of hours and without ‘specialist’ experience)
2.The medication choice and dose required is similarly foreseeable, unlikely to change, and can be safely initiated by all of the health professionals seeing the patient without additional expertise
3.The initiation of the syringe driver reliably triggers a timely review by an appropriate clinician
4.The patient and/or family is aware of the foreseeable need for a syringe driver, any concerns have been explored by an experienced practitioner and the anticipatory prescription done in accordance with their expressed wishes/preferences to achieve symptom control in their preferred place of care.
Local service design will influence whether or not these criteria can be met. In our locality, patients have access to a community palliative care nurse 24hrs a day, changed circumstances are rapidly fed back by carers in the same community palliative care hub, and changes to regular medication doses can be identified because all community se...
Dear Editor,
We read the editorial with interest. As they rightly observe, there are important problems prescribing anticipatory syringe drivers. However, we believe there are selected circumstances where it can be an important contribution to timely symptom management, provided all the following are true:
1. There is a foreseeable distressing circumstance that can be unambiguously identified by all of the health professionals seeing the patient (including those out of hours and without ‘specialist’ experience)
2.The medication choice and dose required is similarly foreseeable, unlikely to change, and can be safely initiated by all of the health professionals seeing the patient without additional expertise
3.The initiation of the syringe driver reliably triggers a timely review by an appropriate clinician
4.The patient and/or family is aware of the foreseeable need for a syringe driver, any concerns have been explored by an experienced practitioner and the anticipatory prescription done in accordance with their expressed wishes/preferences to achieve symptom control in their preferred place of care.
Local service design will influence whether or not these criteria can be met. In our locality, patients have access to a community palliative care nurse 24hrs a day, changed circumstances are rapidly fed back by carers in the same community palliative care hub, and changes to regular medication doses can be identified because all community services use a single integrated electronic health record. The following examples illustrate situations in which we would consider anticipatory prescribing for patients wishing to remain at home and for symptom relief to be prioritised.
In a patient at risk of recurrence of malignant bowel obstruction, where no further surgical or oncological intervention was possible, a situation can be unambiguously identified (“colicky abdominal pain combined with 2 or more vomits within 24 hrs”), in which the need for specific medication is foreseeable (levomepromazine 6.25mg/24hrs and hyoscine butylbromide 60mg/24hrs). Further, in the context of our integrated team, the need for review can be considered at the following morning’s community hub meeting.
In seizures from cerebral metastases - well controlled with levetiracetam 500mg twice daily - but who is at risk of losing their oral route, a situation can be unambiguously identified (“unable to take their oral levetiracetam”) in which the need for specific medication is foreseeable (“levetiracetam 1000mg/24hrs”). The need for timely review can be similarly considered. In this instance, the shared electronic record can be used by the prescriber to see if another prescriber has altered the oral levetiracetam dose that requires the anticipatory prescription to be amended.
Such anticipatory prescribing is contingent on effective communication within a highly integrated community team. It is our experience that, in selected patients, in such a structure anticipatory prescribing of syringe drivers can provide an important contribution to timely symptom management.
Research focusing on quality of life (QoL) in children and adolescents with high-risk malignancy (HRM) is of primary importance. As most of these patients are treated in low and middle income countries1, publications from Central America are of great value. We are thankful to Salaverria et al. for their work addressing this complex and key subject2.
Show MorePatients with HRM were defined by Mahmood et al. as having more than 50% risk of death due to their disease. These patients should receive optimal symptoms management and optimal disease directed therapies to increase both their survival and QoL. To achieve this, the intervention of a specialized pediatric palliative care (PPC) team was proven feasible and effective3, 4. PPC is as a holistic approach that does not exclude cancer directed care and should include the best chemotherapy regimen aiming at optimal QoL and life expectancy.
Salaverria et al. described a prospective cohort of 60 patients suffering from relapsed or refractory leukemia. 44 patients of them died, 39 of whom due to leukemia progression. All Enrolled patients were prospectively followed and assessed for self or proxy-reported QoL with a nearly exhaustive data collection. These results give us a very precise and unprecedented insight into HRM patients’ QoL.
In this sample, all patients received chemotherapy, 65% of patients received specialized PPC at inclusion and 79.5% received specialized PPC in the last month of life. Initial curative in...
Dear Editor
We read with particular interest the recent systematic review and narrative synthesis of clinically assisted hydration in the last days of life [1]. Unsurprisingly, the authors concluded that “there is currently insufficient evidence to draw firm conclusions on the impact of CAH in the last days of life”, which supports the findings of previous reviews [2,3]. We agree with their conclusion, but would like to make some comments on the “quality” / applicability of some of the included (and excluded) studies.
Our concerns relate to:
1. Study type – end-of-life care should be evidence based, and the “gold standard” remains the randomised controlled trial (RCT).
2. Study population – our study [4] excluded patients with dehydration (and with contraindications to CAH), but the Cerchetti et al RCT [5] involved patients with dehydration and renal failure, and the “excluded” Bruera et al RCT [6] specifically involved patients with dehydration. Hence, there is an issue about collating these data, and, importantly, extrapolating these data to the wider population.
3. Study intervention – our study [4] used a variable volume of fluid, based on the patient’s weight (and in accordance with NICE guidance) [7], but the Cerchetti et al RCT [5], and the Bruera et al RCT [6], both used a fixed volume of fluid (e.g. 1 L / day). The rationale for this volume of fluid is unexplained, but it is much less than recommended for maintenance of hydration...
Show MoreTo the Editor. With interest we read the paper by Boddaert et al. [1] about quality of end-of-life cancer care in The Netherlands and recommend the authors with their work. Quality of end-of-life care is of great importance to both patient and relatives. Inappropriate interventions during the disease, certainly in the last 30 days of life, are undesirable. We agree to the benefit of a multifactorial approach in palliative care.
Nevertheless, we have concerns about the use of the term “inappropriate care”, which was used abundantly to describe systemic anti-tumour treatment during the last 30 days of life. Treatment for patients with incurable malignancies aims to achieve two goals: optimization of the overall survival time and of quality of life. Boddaert et al focused on a small part of this complex care. Also, quantification of quality of end-of-life-care is hard, with measurable, but suboptimal indicators as place of death, systemic anti-tumour therapy during the last 30 days of life and consultation of palliative care specialists as used in this paper.
Unfortunately, there is no optimum set for any of the indicators of (in-)appropriate care in the last 30 days of life. To aim for an as low as possible number of patients receiving systemic anti-tumour therapy during the last 30 days of their life, should not be a goal on itself. End-of-life care that actively defers from anti-tumour treatment can be potentially inappropriate too [2] and systemic treatme...
Show MoreDear Editor,
Show MoreWe read with great interest the article by Curry et al. on the outcomes after venting gastro-/jejunostomy from our own institution.
While venting gastrostomy has a potentially important role to play in cancer palliation, it is offered in only approximately 60% of UK centres. The outcome and patient experience is highly dependent on good tube function. Continuous decompression of the stomach and upper small bowel is essential to alleviate symptoms and stop the development of complications.
Little is published on the technical aspects of the procedure, how to undertake this safely and what the requirements for patient selection and aftercare are. Would the authors please be so kind, as to provide some technical detail to guide the readership?
To our knowledge there are no licensed devices for this purpose. What type of tubes did the authors review (push-PEGs +/- jejunal extension, G-tubes with gastropexy, gastrojejunostomy or transgastric jejunostomy tubes), what was the experience of 4-point gastropexy for GJ-tubes and what size was do they recommend to achieve adequate drainage, bearing in mind that balloon-retained silicone tubes have a much smaller inner lumen than polyurethane PEG tubes?
Our attempts using 20Fr push-PEG tubes led to very poor patient experience, which has been improved by switching to gastro-jejunostomy tubes, as they achieve better drainage due accessing the fluid in the duodenum rather than in the stomach, we...
To the editor
We commend Twose et al for their qualitative study conducted with sixteen patients who had therapeutic thoracocentesis for malignant pleural effusions (MPE)1. Respiratory symptoms improved while constitutional symptoms did not; and even though symptomatic benefit was only for a matter of days, patients thought that it was worth any discomfort.
We conducted a similar study with patients with MPE who were identified by the pleural team at a large district general hospital. Patients were interviewed four weeks after a talc pleurodesis or placement of an in-dwelling pleural catheter (IPC). An IPC is a plastic tube which can be placed during a day case procedure and allows intermittent fluid drainage in the community.
A semi-structured electronically recorded interview was conducted by a researcher following a topic guide and, once transcribed, the transcripts were reviewed using thematic analysis by the researchers.
Some of our results echo those of Twose et al. We had a male and mesothelioma preponderance with our participants – 8 of 10 were male and 6 had mesothelioma. Thoracocentesis was the initial pleural instrumentation for all (some therapeutic, some diagnostic) but subsequently 9 of 10 had an IPC and 6 of 10 had attempted talc pleurodesis (some had both). Pre-procedure symptoms were respiratory and constitutional, and for some thoracocentesis was uncomfortable. Where our study differs is the additional data with regard to patient...
Show MoreTitle: Cannabinoids impact on insomniacs with chronic pain: how cautious we should be?
Show MoreThis correspondence provides a comment on the recent review article by Humer et al. (Int. J. Mol. Sci. 2020, 21(19), 7244; https://doi.org/10.3390/ijms21197244)
Dear Editor,
From the results of a recent cross-sectional study on patients with insomnia and chronic pain, published in the BMJ Support Palliat Care, Sznitman and colleagues have suggested that Medicinal Cannabis (MC) could have positive effects in sleep maintenance of patients experiencing chronic pain. Since both conditions, insomnia and chronic pain play an important role in the clinical arena, either related to their impact on the quality of life and associated comorbidities, but also because both have high rates of prevalence among the world population. This is a highly relevant finding, however, we believe that it deserves further consideration.
Although insomnia majorly affects patients seeking care in clinics managing patients complaining of persistent pain1, other sleep conditions as obstructive sleep apnea (OSA) could also prevail in similar circumstances2. In fact, comorbid insomnia with sleep apnea (COMISA) frequently occurs and may lead to a more cautious clinical approach since this comorbid condition might have different etiological, pathophysiological, diagnostic, and therapeutic implications. Either Insomnia1 or OSA increases with age, wi...
Interesting reading the article by Sutherland et al [1] on the use of video consultations in palliative care. As a clinician, as an user and advocate of video consultations I entirely agree that telehealth can and must be used as one of the tools of our disposal to be more efficient looking after our patients. There is no doubt workload is a trigger for new models of care.
Nevertheless, the pandemic has not only triggered an explosion in video consultations due to the need to minimise the risk of infection but a change in law in the United Kingdom that allows its full use, as in this country the death certificate includes the statement “Last seen alive by me …. ” and up to now there was a need to see the patient face to face within the last two weeks before death. Now, it is possible to have seen the patient within the last four weeks, and video consultations are considered as an option to face-to-face consultations.
It is argued there will be no return to the old norm, and that many changes brought by the pandemic will remain after it passes. It is hoped telemedicine expansion will remain, but in palliative medicine it will only do if the law changes remain in place.
References
1. Sutherland AE, Stickland J, Wee B. Can video consultations replace face-to-face interviews? Palliative medicine and the Covid-19 pandemic: rapid review. BMJ Supportive & Palliative Care 2020;10:271-275.
I read with interest the paper titled ‘The liminal space palliative care volunteers occupy and their roles within it: a qualitative study’ by Vanderstichelen et al (1) which reported on volunteers who care for terminally ill people. I consider that the authors’ conclusion that these volunteers occupy a liminal space ‘betwixt and between’ staff and family members may be drawn from an incomplete understanding of Turner’s (2) concept of liminality.
Show MoreThe term derives from limen meaning threshold and is used to denote moving across a boundary from one state to another. The model involves three stages: separation, transition (the liminal phase) and (re-) incorporation. Examples include changes in status, such as getting married or gaining majority, or in life-stage, such as birth and death.
I argue that Vanderstichelen et al’s consideration that these volunteers occupy a liminal space ‘betwixt and between’ staff and family members since they provide care which includes aspects of that given by both these ‘conceptually rigid and mutually exclusive domains’ (p. 9) shows that the volunteer role here is ambiguous rather than liminal. While ambiguity is a core feature of liminality as described by Turner and can be applied to the volunteer role – for example, when there are unclear boundaries between volunteer and paid staff roles (3) - the presence of this feature alone does not make the role liminal.
I acknowledge liminality has been used in some organisational li...
Dear Editor,
We read with great interest the article by Centeno et al (2016) with regards to medical students’ experience of palliative care. [1] As medical students, who have recently experienced compulsory palliative care teaching during our 4th year, we wished to offer an insight into our experiences on its importance within the curriculum.
During pre-clinical years, there was a lack of emphasis on the holistic perspective of dying patients. The early attention on basic sciences can create the notion that medicine is oriented around ‘fixing people’, with little significance placed on the experience of dying. In the UK, the General Medical Council (GMC) provides guidelines for doctors on the ‘Treatment and care towards the end of life: good practice in decision making’. [2] Hence, a palliative care course is imperative, as it prepares medical students for one of the fundamental parts of medicine: respecting and nurturing the process of dying.
As part of our curriculum we have numerous palliative care days throughout the year. They involved visiting a hospice and speaking to patients, their families and staff, both individually, as well as in small groups. Throughout these days there are numerous activities that aid us to challenge and consider the process of dying. These involved reflective practices to allow students to consider their feelings if they were losing the most valued aspects of their life, as well as talks from family members about th...
Show MoreDear Editor,
Show MoreWe read the editorial with interest. As they rightly observe, there are important problems prescribing anticipatory syringe drivers. However, we believe there are selected circumstances where it can be an important contribution to timely symptom management, provided all the following are true:
1. There is a foreseeable distressing circumstance that can be unambiguously identified by all of the health professionals seeing the patient (including those out of hours and without ‘specialist’ experience)
2.The medication choice and dose required is similarly foreseeable, unlikely to change, and can be safely initiated by all of the health professionals seeing the patient without additional expertise
3.The initiation of the syringe driver reliably triggers a timely review by an appropriate clinician
4.The patient and/or family is aware of the foreseeable need for a syringe driver, any concerns have been explored by an experienced practitioner and the anticipatory prescription done in accordance with their expressed wishes/preferences to achieve symptom control in their preferred place of care.
Local service design will influence whether or not these criteria can be met. In our locality, patients have access to a community palliative care nurse 24hrs a day, changed circumstances are rapidly fed back by carers in the same community palliative care hub, and changes to regular medication doses can be identified because all community se...
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