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 and agreed with several points in the editorial [1] that accompanied our main research paper about UK clinicians' views on blood transfusion practice [2]. We have additional responses to the editorial.
We recognise the lack of evidence about red cell transfusion within palliative care, which is why we undertook the largest audit of transfusion practice to date [3]. We analysed 465 transfusion episodes over 3 months from 121 UK hospices. Patients were not usually investigated for the anaemia. Of those that were, a significant proportion would have benefited from B12, folate or iron supplements, although rarely used. Despite being at higher risk of transfusion-associated circulatory overload (TACO), risk-mitigation practices like weighing patients or restricting transfusion to one unit (before review), were only undertaken in 15% of patients. In terms of patient benefit only 83 (18%) had improvement maintained at 30 days; 142 (31%) <14 days, and 50 (11%) had none. 150 patients (32%) were dead at 30 days, over double the predicted number.
While documented death rates and major morbidity from red cell transfusion are low in the general population, there is growing evidence of under recognition and under reporting. A study across 157 UK hospitals showed that 4.3% of inpatients >60 years had increasing respiratory distress post-transfusion, but only one-third diagnosed with TACO by the hospital were reported to the SHOT Haemovigilance Group [...
We read and agreed with several points in the editorial [1] that accompanied our main research paper about UK clinicians' views on blood transfusion practice [2]. We have additional responses to the editorial.
We recognise the lack of evidence about red cell transfusion within palliative care, which is why we undertook the largest audit of transfusion practice to date [3]. We analysed 465 transfusion episodes over 3 months from 121 UK hospices. Patients were not usually investigated for the anaemia. Of those that were, a significant proportion would have benefited from B12, folate or iron supplements, although rarely used. Despite being at higher risk of transfusion-associated circulatory overload (TACO), risk-mitigation practices like weighing patients or restricting transfusion to one unit (before review), were only undertaken in 15% of patients. In terms of patient benefit only 83 (18%) had improvement maintained at 30 days; 142 (31%) <14 days, and 50 (11%) had none. 150 patients (32%) were dead at 30 days, over double the predicted number.
While documented death rates and major morbidity from red cell transfusion are low in the general population, there is growing evidence of under recognition and under reporting. A study across 157 UK hospitals showed that 4.3% of inpatients >60 years had increasing respiratory distress post-transfusion, but only one-third diagnosed with TACO by the hospital were reported to the SHOT Haemovigilance Group [4]. People treated in hospices commonly have several TACO risk factors (as outlined in the editorial). TACO symptoms are non-specific and include cyanosis, dyspnoea and tachycardia which can be mistaken for deterioration of underlying advanced disease.
There is a misconception about how long it takes to correct abnormal haematinics; B12 and folate treatment can increase haemoglobin within 7–10 days and worth considering before transfusion if the cause of anaemia [5]. Intravenous iron to correct deficiency in palliative care is uncommon; however, it is offered by some services and increasingly seen as safer than red cell transfusion.
We believe that our paper [2] suggests UK clinicians might be out of step with the evolving evidence base and clinical guidelines about red cell transfusions. This particularly applies to more rigorous anaemia investigation, increased use of alternative therapies and a more restrictive approach to red cell transfusions. Clinicians should discuss the limited benefit versus potentially higher risks in hospice patients to inform treatment decisions.
References
1) Brown E. Blood transfusions: time for a change in practice. BMJ Support Palliat Care, 2019
2) Neoh K, Stanworth S, Bennett MI. How does blood transfusion practice by UK palliative medicine doctors compare with NICE guidance? BMJ Support Palliat Care 2019
3) Neoh K , Gray R, Grant-Casey J, Estcourt L, Malia C, Boland JW, Bennett MI. National Comparative Audit of Red Blood Cell Transfusion Practice in Hospices: Recommendations for Palliative Care Practice. Palliative Medicine 2019, Vol. 33(1) 102–108 2019
4) The TACO Audit Working Group, on behalf of the National Comparative Audit in Blood Transfusion (NCABT) Steering Group. The 2017 audit of Transfusion Associated Circulatory Overload (2018). NHSBT
Accessed online https://hospital.blood.co.uk/audits/national-comparative-audit/medical-a...
5) Devalia, V, Hamilton, MS, Molloy, AM. Guidelines for the diagnosis and treatment of cobalamin and folate disorders. Br J Haematol 2014; 166: 496–513.
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.
This was a very interesting article. As a professional with frequent intensive care duties early discussions about patient’s wishes are best. Ideally, these should take place away from the acute setting. This is what we always hope to have for our unconscious patients being admitted to the unit.
Unfortunately, these discussions are a bonus rather than routine practice even in end stage disease. Perhaps this partly explains the difference in expectation between the medical team and the family. This leads to management disagreements. It is not uncommon to hear a family “wanting everything doing” for their loved ones in a DNACPR conversation.
In our training we have always been taught that DNACPR is a medical decision. It is good practice nevertheless to communicate any such major management decisions to the family. Nevertheless, there appears to be a move towards completely patient/family centred care. There are multiple occasions a DNACPR is not put in place as the family will not agree, despite a consensus among multiple consultants.
In this climate, with the family often seen as the representative of the patient without capacity, is a DNACPR decision still a medical decision?
I read with interest “Does a one day hospice placement for medical students do more harm than good?” [1]. As a 4th year medical student at The University of Liverpool, and having recently undertaken a 4 week palliative care placement, I would like to weigh in on the themes discussed.
As Ward et al. pointed out, Foundation year 1 doctors (interns) regularly care for patients at the end of life, but undergraduate training is often deficient. Issues around dying and death is one of the most commonly reported sources of junior doctors stress [1][2].
Personal distress from the care of the dying is a factor to burnout; a well-documented condition with detrimental outcomes for healthcare professionals and patients. Given the central reality of death in medicine, it seems paradoxical these issues are not better addressed in undergraduate medical training [2] [3] [4].
The GMC’s publication ‘Tomorrow’s Doctors’, states “Graduates must know and understand the principles of treatment including...palliative care”. Despite this, a systematic review found inconsistent palliative care teaching within undergraduate curriculums. As a result, junior doctors are often unprepared and distressed when caring for palliative care patients [5] [6].
During the 4th year of the MBChB curriculum at The University of Liverpool, students undertake a 4 week palliative care and oncology placement. This consists of three weeks in a local hospice, one week at a specialist cancer hospi...
I read with interest “Does a one day hospice placement for medical students do more harm than good?” [1]. As a 4th year medical student at The University of Liverpool, and having recently undertaken a 4 week palliative care placement, I would like to weigh in on the themes discussed.
As Ward et al. pointed out, Foundation year 1 doctors (interns) regularly care for patients at the end of life, but undergraduate training is often deficient. Issues around dying and death is one of the most commonly reported sources of junior doctors stress [1][2].
Personal distress from the care of the dying is a factor to burnout; a well-documented condition with detrimental outcomes for healthcare professionals and patients. Given the central reality of death in medicine, it seems paradoxical these issues are not better addressed in undergraduate medical training [2] [3] [4].
The GMC’s publication ‘Tomorrow’s Doctors’, states “Graduates must know and understand the principles of treatment including...palliative care”. Despite this, a systematic review found inconsistent palliative care teaching within undergraduate curriculums. As a result, junior doctors are often unprepared and distressed when caring for palliative care patients [5] [6].
During the 4th year of the MBChB curriculum at The University of Liverpool, students undertake a 4 week palliative care and oncology placement. This consists of three weeks in a local hospice, one week at a specialist cancer hospital and three day-long communication skills sessions.
When introduced, a study evaluating the placement found it significantly increased student confidence in palliative care. Since then, the programme has been refined in accordance with the new integrated curriculum. After the placement, 4th year students report feeling better equipped to deal with the emotional toll they face when caring for patients at the end of life [7].
Palliative care placements in the undergraduate medical curriculum - as a core theme - allows medical students to be immersed in the environment and culture. It encourages them to face the difficult but important topics that arise at the end of life. A longer structured clinical placement is one way students can prepare for the difficult and complex situations they will face as junior doctors, to meet GMC requirements and better care for themselves and their patients.
References
1. Ward J, Rayment C, Hallam J. Does a one day hospice placement for medical students do more harm than good? BMJ Supportive & Palliative Care 2019;9:A8.
2. Firth‐Cozens J, Morrison LA. Sources of stress and ways of coping in junior house officers. Stress & Health 1989;5(2):121-126.
3. BMJ. Doctors' emotional reactions to recent death of a patient: cross sectional study of hospital doctors. BMJ 2003;327:185.
4. Moss M, Good VS, Gozal D, Kleinpell R, Sessler CN. An Official Critical Care Societies Collaborative Statement: Burnout Syndrome in Critical Care Health Care Professionals: A Call for Action. AJCC 2016;25(4):368-376.
5. GMC. Tomorrow’s Doctors. GMC 2003 [Cited 26 June 2019]. Available from: https://www.educacionmedica.net/pdf/documentos/modelos/tomorrowdoc.pdf
6. Lloyd-Williams M, Macleod RDM. A systematic review of teaching and learning in palliative care within the medical undergraduate curriculum. Medical Teacher 2004;26(8):683-690.
7. Mason SR, Ellershaw JE. Undergraduate training in palliative medicine: is more necessarily better? Palliative Medicine 2010;24(3):306-309.
Dear Editor
In this issue, Shinjo et al reported that, among Japanese home hospice physicians and palliative care specialists, 32% replied that they had experience in caring for patients who had voluntarily stopped eating and drinking (VSED). 1 Their mean years of clinical experience overall, and in the field of palliative medicine, were 26 years and 13 years, respectively. According to the authors, Japanese patients were also trying to implement VSED to hasten their deaths themselves.
We congratulate the authors on publishing this very important epidemiologic data in Japan. As the authors point out, the study is limited by both recall and social desirability biases, which could explain some inaccuracy in their survey results. Moreover, we wonder whether the way in which VSED was defined in this study also contributed to the relatively high prevalence of physicians who had experience with this practice.
In their questionnaire, VSED was defined as “terminal ill patients electing to stop taking water and nutrition despite the fact that they do not suffer from a difficulty in oral intake such as gastrointestinal obstruction or cachexia”. VSED is an under-recognized practice and there are few data available. Especially in Japan, as they reported, only half of the palliative care physicians were aware of VSED. While their definition was not inaccurate, it is possible that this definition failed to convey the gravity of VSED and, as a result, physicians...
Dear Editor
In this issue, Shinjo et al reported that, among Japanese home hospice physicians and palliative care specialists, 32% replied that they had experience in caring for patients who had voluntarily stopped eating and drinking (VSED). 1 Their mean years of clinical experience overall, and in the field of palliative medicine, were 26 years and 13 years, respectively. According to the authors, Japanese patients were also trying to implement VSED to hasten their deaths themselves.
We congratulate the authors on publishing this very important epidemiologic data in Japan. As the authors point out, the study is limited by both recall and social desirability biases, which could explain some inaccuracy in their survey results. Moreover, we wonder whether the way in which VSED was defined in this study also contributed to the relatively high prevalence of physicians who had experience with this practice.
In their questionnaire, VSED was defined as “terminal ill patients electing to stop taking water and nutrition despite the fact that they do not suffer from a difficulty in oral intake such as gastrointestinal obstruction or cachexia”. VSED is an under-recognized practice and there are few data available. Especially in Japan, as they reported, only half of the palliative care physicians were aware of VSED. While their definition was not inaccurate, it is possible that this definition failed to convey the gravity of VSED and, as a result, physicians who were not familiar with VSED did not fully grasp the concept. Although there are no strict criteria or definitions of VSED, based on the literature2, it should fulfill the following conditions as shown below:
Conditions for VSED
1 Patients are terminally ill, but not imminently dying.
2 Patients have clear decision-making capacity.
3 Patients have unbearable physical, psychological, existential, or spiritual suffering.
4 Patients have had a thorough discussion with their family and physicians about all the possible options to alleviate their suffering.
5 Patients have undergone recommended palliative measures, but their suffering is refractory, or was not controlled to a level acceptable to the patient.
6 Patients are willing to accept that VSED will likely hasten their death.
7 Patients voluntarily stop eating and drinking; it is not due to nausea, anorexia-cachexia syndrome, bowel obstruction, or other etiology that impairs food and fluid intake.
Like other potentially death-hastening options, such as withdrawing life-sustaining therapy (WLST), or palliative sedation, VSED should not be initiated without significant deliberation. VSED should be considered only after all the other options to alleviate patient suffering are exhausted. Considering that the patient is not on any life sustaining treatment and is not imminently dying, the process 4) and 5) should take at least weeks to months, as shown in case anecdotes in the literature. 2-4
In this study, we are concerned that these conditions were not met for a couple of reasons.
First, there are very few palliative care specialists in Japan. The Japanese population over 65 years old is 3.461 million and surveyed palliative care specialists in Japan were 914. This means that numbers of palliative care physicians per 100,000 people aged over 65 years is 2.64 in Japan, as opposed to 15.7 in the United States. 5. Based on the relative paucity of hospice and palliative medicine specialists for elderly patients in Japan, we would expect that there is an under recognition and integration of palliative care concepts and, as such, procedures like VSED would not be commonly practiced. Of course, there may be an underlying cultural predilection to this way of ending one’s life, as it may be bound up in preserving patient dignity, autonomy, and honor.
Secondly, although VSED is more challenging than WLST both legally and ethically2, WLST is still not legalized, and is not well accepted in Japanese society. It is true that the primary goal of both VSED and WLST is to limit patient suffering and further life in an unacceptable state, but there is a difference between the two: WLST is often performed in patients whose dying is prolonged by life support, VSED is rather utilized to hasten death actively in patients who are not imminently dying. In the United States, VSED is not illegal, but its legality has not been fully tested, and remains ethically controversial. 2 WLST, on the other hand, is both legally and ethically acceptable.. In Japan, WLST has been controversial. In 2009, the Supreme Court of Japan found a physician who withdrew mechanical ventilation from a comatose patient guilty of murder. 6 Although more recent guidelines from professional medical societies support WLST in a terminally ill patient7, there is still no legal protection for physicians who perform WLST, and consequently, WLST remains still very rare in Japan.
Based on the above, it seems unlikely that the physicians surveyed met the criteria of VSED per the above table.
We agree that palliative care and hospice physicians should support patients who are willing to pursue VSED, including providing continuous deep sedation if necessary. But before such an option is considered, palliative care and hospice clinicians should have exhausted all available options to alleviate the suffering of terminally ill patients and their families.
1. Shinjo T, Morita T, Kiuchi D, et al. Japanese physicians' experiences of terminally ill patients voluntarily stopping eating and drinking: a national survey. BMJ supportive & palliative care 2017 doi: 10.1136/bmjspcare-2017-001426 [published Online First: 2017/11/10]
2. Quill TE, Ganzini L, Truog RD, et al. Voluntarily Stopping Eating and Drinking Among Patients With Serious Advanced Illness-Clinical, Ethical, and Legal Aspects. JAMA internal medicine 2017 doi: 10.1001/jamainternmed.2017.6307 [published Online First: 2017/11/09]
3. Eddy DM. A conversation with my mother. JAMA : the journal of the American Medical Association 1994;272(3):179-81. doi: 10.1001/jama.1994.03520030013005
4. Quill TE, Lee BC, Nunn S. Palliative treatments of last resort: choosing the least harmful alternative. Annals of internal medicine 2000;132(6):488-93.
5. Medicine AAoHaP. Workforce Study | AAHPM 2017 [Available from: http://aahpm.org/career/workforce-study - HPMphysicians accessed December 30th 2017.
6. @japantimes. Top court dismisses euthanasia appeal | The Japan Times: @japantimes; 2009 [updated 2009-12-10T09:01:24+09:00. Available from: https://www.japantimes.co.jp/news/2009/12/10/news/top-court-dismisses-eu... - .WkgkhyPGwi4 accessed December 30th 2017.
7. A guideline for the end-of-life care in emergency/critical care medicine 2014 [updated November 4th, 2014. Available from: http://www.jsicm.org/pdf/1guidelines1410.pdf accessed December 31st 2017.
Letter to the Editor
Shinjo et al. recently surveyed Japanese home hospice and palliative care physicians’ with regard to their experiences of caring for patients who voluntarily stop eating and drinking (VSED) in order to hasten death and questioned their opinion towards continuous deep sedation (CDS) as a mean to relieve patients’ refractory symptoms during VSED (1). According to the authors, attitudes of non-acceptance of CDS in VSED (36%) may have been related to the opinion that the use of sedatives during VSED was commensurate with euthanasia. Compared to Dutch family physicians - of whom an overwhelming majority endorsed CDS in VSDE -, acceptance was rather low among Japanese physicians (15%), and the authors evoke that physicians may face a « moral conflict in respecting the patient’s self-determination and allowing patient suicide ».
While we value the authors’ contribution to this clinically relevant topic, we would like to complete their point of view with regard to the possible underlying reasons of the physicians’ attitudes. Indeed, ethical elements may play a role, but psychological dynamics may also have influenced their stance. We have previously raised attention to the existence of collusions in end-of-life care (2). Collusion, an unconscious dynamic between patients and caregivers, occurs in situations which reflect an unresolved psychological issue shared by the involved persons; it may provoke strong emotions and unreflected behaviour (3). F...
Letter to the Editor
Shinjo et al. recently surveyed Japanese home hospice and palliative care physicians’ with regard to their experiences of caring for patients who voluntarily stop eating and drinking (VSED) in order to hasten death and questioned their opinion towards continuous deep sedation (CDS) as a mean to relieve patients’ refractory symptoms during VSED (1). According to the authors, attitudes of non-acceptance of CDS in VSED (36%) may have been related to the opinion that the use of sedatives during VSED was commensurate with euthanasia. Compared to Dutch family physicians - of whom an overwhelming majority endorsed CDS in VSDE -, acceptance was rather low among Japanese physicians (15%), and the authors evoke that physicians may face a « moral conflict in respecting the patient’s self-determination and allowing patient suicide ».
While we value the authors’ contribution to this clinically relevant topic, we would like to complete their point of view with regard to the possible underlying reasons of the physicians’ attitudes. Indeed, ethical elements may play a role, but psychological dynamics may also have influenced their stance. We have previously raised attention to the existence of collusions in end-of-life care (2). Collusion, an unconscious dynamic between patients and caregivers, occurs in situations which reflect an unresolved psychological issue shared by the involved persons; it may provoke strong emotions and unreflected behaviour (3). For example, a difficulty to deal with separation may motivate a patient to request euthanasia: anxiety provoked by impending separation (death), which he fears most, thus motivates him to hasten the process of separation (« get it over with »). If this patient meets a physician with the same difficulty, the clinician might be stressed by the request to an extent, that he either harshly rejects it (negative collusion, he creates distance in order to « get over with this anxiety provoking request ») or endorses it and even contributes to the patient’s death (positive collusion, he joins the patient in « get it over with »); in both cases, collusion hampers the clinician capacity to empathically explore the patient’s motivations for his request.
Recently, we have proposed the Collusion Classification Grid (CCG) as a tool to further investigate collusion (4), which is considered to be prevalent in end-of-life care (5). The use of the CCG allows to identify the following elements, which may explain the attitudes towards VSED and CDS of some of the physicians. Thematic triggers of possible patient-clinician collusions in situations of VSED and CDS: separation anxiety, need of control, difficulty to face loss; positive collusion manifested as endorsement of VSED and CDS, and negative collusion as its rejection; associated emotions of collusions: anxiety, anger or sadness; potentially participating persons : patients, family members and clinicians; context-related factors influencing the occurrence of collusion: dominant discourses on rights to control one’s death (e.g., in the Netherlands) (6), or on the contrary a self, which is conceived less individually and more relationally (e.g., in Japan) (7).
In conclusion, we try to make the point that not only ethical considerations guide clinicians in the formation of attitudes towards issues such as VSED and CDS; there are also powerful psychological motivations at work. An ethical perspective, on the other hand, is always based on an evaluation of the singular situation, a careful deliberation and a ponderation of elements in favour and against a request (8). Collusion may thus hamper ethical delberation and lead to misjudgements.
1) Shinjo, T, Morita T, Kiuchi D, et al. : Japanese physicians’ experiences of terminally ill patients voluntarily stopping eating and drinking : a national survey. BMJ Supp and Pall Care 2017 ; 0 : 1-3.
2) Stiefel F, Nakamura K, Terui T, and Ishitani K : Collusions Between Patients and Clinicians in End-of-Life Care : Why Clarity Matters. J Pain Symptom Manage 2017 ; 53: 776-782.
3) The A-M, Hak T, Këter G, van der Wal G : Collusion in doctor-patient communication about imminent death : an ethnographic study. BMJ 2000 ; 321 : 1376-1381.
4) Stiefel F, Nakamura K, Terui T, Ishitani K : The Collusion Classification Grid : a tool for clinical supervision and research J Pain Symptom Manage 2018 (in press).
5) Low AJ, Kiow SL, Main N, et al. : Reducing collusion between family members and clincians of patients referred to the palliative care team. The Permanente J 2009 ; 13 : 11-15.
6) Zimmermann C : Denial of impending death : a discourse analysis of the palliative care literature. Soc Sci Med 2004 ; 59 : 1769-1780.
7) Kitayama S, Markus HR, Matsumoto H and Norasakkunkit V: Individual and collective process in the construction of the self: Self-enhancement in the Unites States and self-criticism in Japan. Journal of Personality and Social Psychology 1997; 72: 1245-1267
8) Gracia D : Ethical case deliberation and decision making. Med Health Care Phil 2003 ; 6(3) : 227-233.
We agree with Sleeman and Higginson [1] who emphasised the need to
gather evidence of effectiveness of EPaCCS before widespread and
uncritical adoption by the NHS. An EPaCCS evaluation framework was
recently developed by our team on behalf of end of life commissioners in
Leeds [2]. There was, and remains, a scarcity of guidance on approaches to
gathering evidence for EPaCCS but we identified factors that highlight the
c...
We agree with Sleeman and Higginson [1] who emphasised the need to
gather evidence of effectiveness of EPaCCS before widespread and
uncritical adoption by the NHS. An EPaCCS evaluation framework was
recently developed by our team on behalf of end of life commissioners in
Leeds [2]. There was, and remains, a scarcity of guidance on approaches to
gathering evidence for EPaCCS but we identified factors that highlight the
complexity of EPaCCS evaluation:
1) Most EPaCCS will differ
The principle of EPaCCS, as pointed out by Petrova et al [3] is a
robust one; its aim is to support sharing of up-to-date key information
about patients believed to be in the last year of their life. This feels
like an intuitive approach that could improve care for patients at end of
life. However, as Petrova et al [3] report, fewer than half of England's
clinical commissioning groups have a functioning EPaCCS. Implementation of
EPaCCS systems have led to disparate local approaches to adapting and
embedding EPaCCS templates in electronic medical record systems, across
wide-ranging and diverse multidisciplinary teams. Before conducting our
evaluation in Leeds, we undertook fifteen interviews with health
professionals delivering community care. While intended to inform how
EPaCCS is used in Leeds, it highlighted the diverse approaches to EPaCCS
use; a district nurse opened an EPaCCS for any new patient entering a care
home, a GP created an EPaCCS in response to any referral from a palliative
care team, and a GP opted out of using EPaCCS for an alternative template
that collates similar items. Such diversity in the use of EPaCCS was
occurring locally in one city, despite an intensive citywide training
programme. Furthermore, general practices in Leeds use one of two separate
electronic medical record systems, with slightly different EPaCCS
templates. The EPaCCS templates have also been iteratively developed, with
subsequent changes to the form used in practice. This level of complexity
highlights the need to consider carefully how individual EPaCCS might be
evaluated, in particular how regional or national comparisons and
evaluations are framed.
2) EPaCCS is not static
Our evaluation sought to identify the number of days before death
that items were added to a patient's EPaCCS record. Documented preferences
for DNACPR wishes were recorded a median of 34 days before death, with
EPaCCS records being created a median of 31 days before death. A range of
initiatives for improving documentation of DNACPR wishes had taken place
in Leeds before and during EPaCCS implementation. The crossover in
clinical codes in an EPaCCS template with other items on a patient's
medical record, and the occurrence of parallel service improvement
initiatives limited the extent to which our evaluation could attribute
improvements to EPaCCS.
3) Qualitative work is crucial
Our brief engagement with health professionals prior to the
evaluation highlighted that qualitative work will be essential to
understanding how EPaCCS is currently being used. A recent qualitative
study by Wye et al [4] found that most users of EPaCCS were community
health professionals, which may account for attributions to EPaCCS of
increases in patient home deaths. Qualitative approaches can offer crucial
insights into what is happening on the ground, away from broad claims of
EPaCCS benefits. Engaging with health professionals may also help to
identify why so few eligible patients are being registered on EPaCCS. Wye
et al [4] reported low numbers of patients registered on EPaCCS (9% and
13% in two separate regions), aligned with reports of systems such as
Coordinate My Care achieving 16.6%[3]. In Leeds, 26.8% of all eligible
deaths were recorded. This was calculated using Public Health England data
on the average number of deaths with underlying cause of cancer,
circulatory and respiratory over two years as a denominator. Using these
data may be a useful proxy for patients eligible for EPaCCS, rather than
all patient deaths. However, even with this refined calculation, in-depth
exploration of health professional perspectives is going to be essential
to understand why low numbers of patients are being registered.
4) Enacting change or reporting practice?
A key issue that our evaluation highlighted is the difficulties of
interpreting EPaCCS data. Having separated association from causality, we
considered whether EPaCCS acts to improve practice or whether it documents
and reflects what is already taking place in practice. Where, in our
evaluation, items from an EPaCCS record are entered ahead of the creation
of an EPaCCS template, could health professionals already be capturing
data that is clinically meaningful? Could EPaCCS just be collecting what
is already good practice?
While the principle of EPaCCS is a robust one, generating evidence
around its use and evaluating its impact on information sharing is far
more complex. Without understanding the health professional perspective,
alongside their approaches, motivations and interaction with EPaCCS, it is
difficult to evaluate the effectiveness of the approach. We look forward
to seeing research develop in this area to enable untested assumptions
about the role of EPaCCS to be challenged. It will also hopefully lead to
a better understanding of the cause of low uptake, bringing us closer to
understanding whether EPaCCS can improve the coordination of end of life
care for patients and their caregivers.
1. Sleeman KE and Higginson IJ. Evidence-based policy in palliative
care: time to learn from our mistakes. BMJ Supportive & Palliative
Care 2016 6(4):417. doi: 10.1136/bmjspcare-2016-001250
2. Allsop MJ, Kite S, McDermott S et al. Electronic palliative care
coordination systems: Devising and testing a methodology for evaluating
documentation. Palliative Medicine 2016. doi: 10.1177/0269216316663881
3. Petrova M, Riley J, Abel J et al. Crash course in EPaCCS
(Electronic Palliative Care Coordination Systems): 8 years of successes
and failures in patient data sharing to learn from. BMJ Supportive &
Palliative Care 2016. doi: 10.1136/bmjspcare-2015-001059
4. Wye L, Lasseter G, Simmonds B et al. Electronic palliative care
coordinating systems (EPaCCS) may not facilitate home deaths: A mixed
methods evaluation of end of life care in two English counties. Journal of
Research in Nursing 2016 21(2):96-107. doi: 10.1177/1744987116628922
As the lead of a Marie Curie funded study of EPaCCS, I welcome the
attention that electronic palliative care systems are increasingly
receiving. However unlike Petrova et al, I believe the "striking" EPaCCS
results on facilitating home deaths mentioned by Petrova et al may largely
be explained by selection bias.
In our mixed methods study, we too found impressive results in that
those with an electronic EPaCCS...
As the lead of a Marie Curie funded study of EPaCCS, I welcome the
attention that electronic palliative care systems are increasingly
receiving. However unlike Petrova et al, I believe the "striking" EPaCCS
results on facilitating home deaths mentioned by Petrova et al may largely
be explained by selection bias.
In our mixed methods study, we too found impressive results in that
those with an electronic EPaCCS record were 70-78% more likely to die in
the community compared to those without. However, analysis of EPaCCS
databases and qualitative interviews with over 100 hospital and community
professionals revealed that EPaCCS was almost exclusively used by
community professionals working with those who intended to die at home. So
if only community professionals register only patients being cared for in
the community, the "striking" result of patients dying in the community is
unsurprising.
This paper was dismissed by Petrova et al as suffering from
methodological flaws, yet the nature of these flaws were not described in
the Petrova paper nor were the authors able to provide us with these
details. Readers wanting to make up their own mind should look up
Electronic palliative care coordinating systems (EPaCCS) may not
facilitate home deaths DOI: 10.1177/1744987116628922 (1).
Our paper is not the only one to raise doubts about the impact of
EPaCCS on home deaths. A recent independent national study using mixed
methods also concluded that there was no conclusive evidence of impact on
place of death between EPaCCS and non-EPaCCS sites (2). Thus two
independent evaluations have raised queries about the heralded effect of
EPaCCS on home deaths.
All four authors of the Petrova et al paper rightly declare that
every one of them is partly funded by EPaCCS projects. I do not believe
that this conflict of interest meant that they intentionally ignored more
negative studies. In fact they inform us that the inclusion of our paper
provoked extensive debate. But, as we point out in our paper, by only
focusing on quantitative data in evaluating EPaCCS and not collecting
qualitative data, misleading conclusions can easily drawn.
1. Wye L, Lasseter G, Simmonds B, Duncan L, Percival J, Purdy S.
Electronic palliative care coordinating systems (EPaCCS) may not
facilitate home deaths: A mixed methods evaluation of end of life care in
two English counties. Journal of Research in Nursing 2016; 21(2): 96-107.
2. Whole Systems Partnership. Independent evaluation of Electronic
Palliative Care Coordination Systems (EPaCCS) in England FINAL REPORT,
2016.
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...
We read and agreed with several points in the editorial [1] that accompanied our main research paper about UK clinicians' views on blood transfusion practice [2]. We have additional responses to the editorial.
We recognise the lack of evidence about red cell transfusion within palliative care, which is why we undertook the largest audit of transfusion practice to date [3]. We analysed 465 transfusion episodes over 3 months from 121 UK hospices. Patients were not usually investigated for the anaemia. Of those that were, a significant proportion would have benefited from B12, folate or iron supplements, although rarely used. Despite being at higher risk of transfusion-associated circulatory overload (TACO), risk-mitigation practices like weighing patients or restricting transfusion to one unit (before review), were only undertaken in 15% of patients. In terms of patient benefit only 83 (18%) had improvement maintained at 30 days; 142 (31%) <14 days, and 50 (11%) had none. 150 patients (32%) were dead at 30 days, over double the predicted number.
While documented death rates and major morbidity from red cell transfusion are low in the general population, there is growing evidence of under recognition and under reporting. A study across 157 UK hospitals showed that 4.3% of inpatients >60 years had increasing respiratory distress post-transfusion, but only one-third diagnosed with TACO by the hospital were reported to the SHOT Haemovigilance Group [...
Show MoreDear 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...
This was a very interesting article. As a professional with frequent intensive care duties early discussions about patient’s wishes are best. Ideally, these should take place away from the acute setting. This is what we always hope to have for our unconscious patients being admitted to the unit.
Unfortunately, these discussions are a bonus rather than routine practice even in end stage disease. Perhaps this partly explains the difference in expectation between the medical team and the family. This leads to management disagreements. It is not uncommon to hear a family “wanting everything doing” for their loved ones in a DNACPR conversation.
In our training we have always been taught that DNACPR is a medical decision. It is good practice nevertheless to communicate any such major management decisions to the family. Nevertheless, there appears to be a move towards completely patient/family centred care. There are multiple occasions a DNACPR is not put in place as the family will not agree, despite a consensus among multiple consultants.
In this climate, with the family often seen as the representative of the patient without capacity, is a DNACPR decision still a medical decision?
I read with interest “Does a one day hospice placement for medical students do more harm than good?” [1]. As a 4th year medical student at The University of Liverpool, and having recently undertaken a 4 week palliative care placement, I would like to weigh in on the themes discussed.
Show MoreAs Ward et al. pointed out, Foundation year 1 doctors (interns) regularly care for patients at the end of life, but undergraduate training is often deficient. Issues around dying and death is one of the most commonly reported sources of junior doctors stress [1][2].
Personal distress from the care of the dying is a factor to burnout; a well-documented condition with detrimental outcomes for healthcare professionals and patients. Given the central reality of death in medicine, it seems paradoxical these issues are not better addressed in undergraduate medical training [2] [3] [4].
The GMC’s publication ‘Tomorrow’s Doctors’, states “Graduates must know and understand the principles of treatment including...palliative care”. Despite this, a systematic review found inconsistent palliative care teaching within undergraduate curriculums. As a result, junior doctors are often unprepared and distressed when caring for palliative care patients [5] [6].
During the 4th year of the MBChB curriculum at The University of Liverpool, students undertake a 4 week palliative care and oncology placement. This consists of three weeks in a local hospice, one week at a specialist cancer hospi...
Dear Editor
In this issue, Shinjo et al reported that, among Japanese home hospice physicians and palliative care specialists, 32% replied that they had experience in caring for patients who had voluntarily stopped eating and drinking (VSED). 1 Their mean years of clinical experience overall, and in the field of palliative medicine, were 26 years and 13 years, respectively. According to the authors, Japanese patients were also trying to implement VSED to hasten their deaths themselves.
We congratulate the authors on publishing this very important epidemiologic data in Japan. As the authors point out, the study is limited by both recall and social desirability biases, which could explain some inaccuracy in their survey results. Moreover, we wonder whether the way in which VSED was defined in this study also contributed to the relatively high prevalence of physicians who had experience with this practice.
In their questionnaire, VSED was defined as “terminal ill patients electing to stop taking water and nutrition despite the fact that they do not suffer from a difficulty in oral intake such as gastrointestinal obstruction or cachexia”. VSED is an under-recognized practice and there are few data available. Especially in Japan, as they reported, only half of the palliative care physicians were aware of VSED. While their definition was not inaccurate, it is possible that this definition failed to convey the gravity of VSED and, as a result, physicians...
Show MoreLetter to the Editor
Show MoreShinjo et al. recently surveyed Japanese home hospice and palliative care physicians’ with regard to their experiences of caring for patients who voluntarily stop eating and drinking (VSED) in order to hasten death and questioned their opinion towards continuous deep sedation (CDS) as a mean to relieve patients’ refractory symptoms during VSED (1). According to the authors, attitudes of non-acceptance of CDS in VSED (36%) may have been related to the opinion that the use of sedatives during VSED was commensurate with euthanasia. Compared to Dutch family physicians - of whom an overwhelming majority endorsed CDS in VSDE -, acceptance was rather low among Japanese physicians (15%), and the authors evoke that physicians may face a « moral conflict in respecting the patient’s self-determination and allowing patient suicide ».
While we value the authors’ contribution to this clinically relevant topic, we would like to complete their point of view with regard to the possible underlying reasons of the physicians’ attitudes. Indeed, ethical elements may play a role, but psychological dynamics may also have influenced their stance. We have previously raised attention to the existence of collusions in end-of-life care (2). Collusion, an unconscious dynamic between patients and caregivers, occurs in situations which reflect an unresolved psychological issue shared by the involved persons; it may provoke strong emotions and unreflected behaviour (3). F...
We agree with Sleeman and Higginson [1] who emphasised the need to gather evidence of effectiveness of EPaCCS before widespread and uncritical adoption by the NHS. An EPaCCS evaluation framework was recently developed by our team on behalf of end of life commissioners in Leeds [2]. There was, and remains, a scarcity of guidance on approaches to gathering evidence for EPaCCS but we identified factors that highlight the c...
As the lead of a Marie Curie funded study of EPaCCS, I welcome the attention that electronic palliative care systems are increasingly receiving. However unlike Petrova et al, I believe the "striking" EPaCCS results on facilitating home deaths mentioned by Petrova et al may largely be explained by selection bias.
In our mixed methods study, we too found impressive results in that those with an electronic EPaCCS...
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