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.
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.
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?
Hiccups, also known as singultus, is an involuntary spastic contraction of the diaphragm and intercostal muscles that leads to inspiration of air, followed by abrupt glottic closure.1 They can be classified based on duration: bouts (up to 48 hours); persistent (48 hours to 1 month); intractable (more than 1 month) and recurrent.2 Through its constant interruptive nature hiccups can have serious consequences, including dehydration, fatigue, insomnia, lower quality of life, malnutrition, psychological stress, and weight loss.1
The cause can be peripheral or central. Peripheral causes are from irritation to the phrenic or vagus nerve. Central causes can be divided into neurological, like cerebrovascular accident, brain trauma, intracranial tumor, non-neurological conditions (e.g., infections), multiple sclerosis, and Parkinson’s syndrome.3 In our case the exact reason for hiccups was unknown but most likely brain metastasis.
A 47-year-old gentleman with stage IV non-small cell carcinoma of lung, with progressive lung and bone metastasis, was admitted with worsening hiccups, pain, and vomiting. He was initially started on metoclopramide 40mg IV over 24 hours; dose was increased to 60mg with no benefit and later oral baclofen added (10mg three times a day).4 The hiccups responded to baclofen but his sensorium deteriorated likely due to disease progression. He was unable to take oral medications or tolerate nasogastric tube insertion. Since baclofen is available only...
Hiccups, also known as singultus, is an involuntary spastic contraction of the diaphragm and intercostal muscles that leads to inspiration of air, followed by abrupt glottic closure.1 They can be classified based on duration: bouts (up to 48 hours); persistent (48 hours to 1 month); intractable (more than 1 month) and recurrent.2 Through its constant interruptive nature hiccups can have serious consequences, including dehydration, fatigue, insomnia, lower quality of life, malnutrition, psychological stress, and weight loss.1
The cause can be peripheral or central. Peripheral causes are from irritation to the phrenic or vagus nerve. Central causes can be divided into neurological, like cerebrovascular accident, brain trauma, intracranial tumor, non-neurological conditions (e.g., infections), multiple sclerosis, and Parkinson’s syndrome.3 In our case the exact reason for hiccups was unknown but most likely brain metastasis.
A 47-year-old gentleman with stage IV non-small cell carcinoma of lung, with progressive lung and bone metastasis, was admitted with worsening hiccups, pain, and vomiting. He was initially started on metoclopramide 40mg IV over 24 hours; dose was increased to 60mg with no benefit and later oral baclofen added (10mg three times a day).4 The hiccups responded to baclofen but his sensorium deteriorated likely due to disease progression. He was unable to take oral medications or tolerate nasogastric tube insertion. Since baclofen is available only as tablets, oral solutions or intra thecal injection, based on previous reports,5 we gave intrathecal (IT) baclofen solution as a subcutaneous (S/C) infusion. We started a dose of 10 mg baclofen over 24 hours. A 20ml vial (10mg) was diluted with 16 ml of 0.9% saline and given through a pump at 1.5ml per hour that delivered baclofen at 0.42mg per hour.5,6 Hiccups improved in 24 hours with reduction in frequency; within 48 hours he was symptom free. Due to non-availability of the baclofen intrathecal solution we had to discontinue this after 3 days, and he was started on midazolam infusion during the last days of his life.
Baclofen is a centrally acting muscle relaxant and antispasmodic. Because of its high oral bioavailability we assumed the initial SC dose would be about the same as after oral administration.5 Baclofen is well absorbed by mouth; bioavailability is 85-90% and peak concentration achieved after 1.5 hours. 70-80% is primarily excreted through the kidneys. Half-life is 2.5–4 hr.7
The exact mechanism of action is still unclear. It inhibits both monosynaptic and polysynaptic spinal reflexes, probably by hyperpolarization of afferent terminals. Actions at supraspinal sites may also occur. Baclofen is GABA mimetic thereby inhibiting the release of excitatory neurotransmitters glutamate and aspartate, in spinal and supraspinal levels and acts as antispasmodic.8
Treatment of hiccups is based on the underlying cause, which in palliative care is usually multifactorial. Most other medications for hiccups act via dopaminergic or GABAergic pathways which include benzodiazepines, chlorpromazine, gabapentin, haloperidol, and metoclopramide. Palliative care patients at end of life are often treated with midazolam. If intractable hiccups are of central origin, baclofen is recommended as first line treatment1 and this is supported by a randomized controlled trial.9 Second-line agents include gabapentin, haloperidol, methylphenidate, and nimodipine. In the last days of life, consideration should also be given to midazolam by subcutaneous infusion for intractable hiccups. Non-pharmacological and interventional treatments may be effective and include radiofrequency phrenic nerve ablation, transesophageal diaphragmatic pacing, and acupuncture. Acupuncture is slightly more effective than conventional treatments.10
Intrathecal baclofen solution was administered subcutaneously over a short period of time. It was well tolerated with almost complete resolution of hiccups with no adverse effects. This case report also suggests that S/C baclofen can be used effectively when enteral routes are unavailable.
References
1. Jeon YS, Kearney AM, Baker PG: Management of hiccups in palliative care patients. BMJ Support Palliat Care 8:1-6, 2018
2. Goyal A, Mehmood S, Mishra S, et al: Persistent hiccups in cancer patient: a presentation of syndrome of inappropriate antidiuretic hormone induced hyponatremia. Indian J Palliat Care 19:110-2, 2013
3. Kobayashi Z, Tsuchiya K, Uchihara T, et al: Intractable hiccup caused by medulla oblongata lesions: a study of an autopsy patient with possible neuromyelitis optica. J Neurol Sci 285:241-5, 2009
4. Burke AM, White AB, Brill N: Baclofen for intractable hiccups. N Engl J Med 319:1354, 1988
5. Remi C, Albrecht E: Subcutaneous use of baclofen. J Pain Symptom Manage 48:e1-3, 2014
6. Myles H, Cranfield F: P-119 Use of BACLOFEN in a continuous subcutaneous infusion, British Medical Journal Publishing Group, 2017
7. Twycross RW, Andrew Howard, Paul: Palliative Care Formulary (PCF5). United Kingdom, palliative drugs.com, 2015 pp. 593-594
8. Ramirez FC, Graham DY: Treatment of intractable hiccup with baclofen: results of a double-blind randomized, controlled, cross-over study. Am J Gastroenterol 87:1789-91, 1992
9. Zhang C, Zhang R, Zhang S, et al: Baclofen for stroke patients with persistent hiccups: a randomized, double-blind, placebo-controlled trial. Trials 15:295, 2014
10. Choi TY, Lee MS, Ernst E: Acupuncture for cancer patients suffering from hiccups: a systematic review and meta-analysis. Complement Ther Med 20:447-55, 2012
Elizabeth Davies uses palliative care "to explore the potential use of poetry in healthcare". And indeed its use can be much wider. As she points out, "For those who enjoy reading poetry, discussing or writing it can become a means of expressing emotion, making sense of events and putting a biographical story togerther."
That was my experience following the deaths, in a motor vehicle accident, of my eldest son Marcus and his partner Rachael. Verse written, wept over, and repeatedly revised during the year after their deaths was, I'm sure, helpful in my coming to accept, at a 'gut level' as well as intellectually, what had happened.
And it wasn't helpful just to me. When a selection of the verse (1) was published to raise money for a trust in memory of Marcus and Rachael, it also proved useful to some who had suffered similar bereavement, perhaps because the writer had experienced the same hell as them:
"but our souls too
are pierced by a sword." (2)
(1) 'As Well as Joy - Elegies for Marcus and Rachael'; Rachael Gloag and Marcus Fitchett Memorial Medical Education Trust, Dunedin, 1998
(2) Ib.; p. 40. 'The Feast of the Presentation of Jesus in the Temple'.
Many thanks for this interesting article which overviews the historical and social developments in the Western world. With respect to definition of communities in the context of compassionate communities, we defined quite specifically what this is in our article Circles of care: should community development redefine the practice of palliative care?Abel J, et al. BMJ Supportive & Palliative Care 2013;3:383–388. doi:10.1136/bmjspcare-2012-000359. Communities exist in the context of inner and outer networks, supported by the surrounding community. These networks are no longer defined by geographical boundaries as there are forms of support involving digital technology. Support is given in many ways and it is the resilience of these community networks that makes an enormous difference at end of life, as explained by Horsfall et al in their research End of life at home: Co-creating an ecology of care
D Horsfall, A Yardley, R Leonard, K Noonan… - 2015 - researchdirect.westernsydney.edu …
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.
In McCaughan’s qualitative study,(1) I was drawn by two themes identified from interviews with clinicians and relatives of patients with haematological cancers: ‘mismatch between the expectations and reality of home death’ and ‘a preference for hospital death.’ This challenges the established dogma that most people would wish to die at home, if they had the choice.(2)
The paper goes on to posit reasons, namely that patients with haematological cancers can have complicated clinical trajectories, with difficult-to-manage symptoms towards the end of life. Whilst this is true, it can also be more broadly applied to many terminal disease trajectories, in which single organ failure can progress to multi-organ involvement, brittle health and the risk of sudden deterioration. This can be frightening for both the patient and their close ones, hence an emergency call and blue light to A&E. Inpatient symptom control and support may then ineluctably become inpatient terminal care.
In fact, desire for a home death is likely an overstated assertion, particularly as people approach the terminal phase of illness,(3) and particularly in conditions other than cancer.(4) The ideal of a home death may be very different to the reality of managing complex symptoms without the 24-hour access to medical professionals or support available in a hospital or hospice.
The National End of Life Care Intelligence Network identifies death in the ‘usual place of residence’ (home...
In McCaughan’s qualitative study,(1) I was drawn by two themes identified from interviews with clinicians and relatives of patients with haematological cancers: ‘mismatch between the expectations and reality of home death’ and ‘a preference for hospital death.’ This challenges the established dogma that most people would wish to die at home, if they had the choice.(2)
The paper goes on to posit reasons, namely that patients with haematological cancers can have complicated clinical trajectories, with difficult-to-manage symptoms towards the end of life. Whilst this is true, it can also be more broadly applied to many terminal disease trajectories, in which single organ failure can progress to multi-organ involvement, brittle health and the risk of sudden deterioration. This can be frightening for both the patient and their close ones, hence an emergency call and blue light to A&E. Inpatient symptom control and support may then ineluctably become inpatient terminal care.
In fact, desire for a home death is likely an overstated assertion, particularly as people approach the terminal phase of illness,(3) and particularly in conditions other than cancer.(4) The ideal of a home death may be very different to the reality of managing complex symptoms without the 24-hour access to medical professionals or support available in a hospital or hospice.
The National End of Life Care Intelligence Network identifies death in the ‘usual place of residence’ (home, care home or religious establishment) as a key performance indicator (KPI) and thus a proxy marker for good quality terminal care.(5) McCaughan’s article discusses why this quality indicator is not met in one disease subset. I propose that the focus should instead be as follows. Firstly, individuals approaching the end of life should be provided with the appropriate information to allow them to make their own informed decision on preferred place of death. ‘Preferred place of death’ rather than ‘usual place of residence’ – even if the latter remains to be the most popular choice – may then be a more suitable KPI. Secondly, we must strive for the best possible care in each setting. For those with complex symptomatic needs not currently practical to manage in the community, or for those who do find themselves to be in hospital near the end of life, it seems paramount that we develop inpatient services to enable ‘a good death in hospital.’
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
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...
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 MoreThis 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?
Hiccups, also known as singultus, is an involuntary spastic contraction of the diaphragm and intercostal muscles that leads to inspiration of air, followed by abrupt glottic closure.1 They can be classified based on duration: bouts (up to 48 hours); persistent (48 hours to 1 month); intractable (more than 1 month) and recurrent.2 Through its constant interruptive nature hiccups can have serious consequences, including dehydration, fatigue, insomnia, lower quality of life, malnutrition, psychological stress, and weight loss.1
Show MoreThe cause can be peripheral or central. Peripheral causes are from irritation to the phrenic or vagus nerve. Central causes can be divided into neurological, like cerebrovascular accident, brain trauma, intracranial tumor, non-neurological conditions (e.g., infections), multiple sclerosis, and Parkinson’s syndrome.3 In our case the exact reason for hiccups was unknown but most likely brain metastasis.
A 47-year-old gentleman with stage IV non-small cell carcinoma of lung, with progressive lung and bone metastasis, was admitted with worsening hiccups, pain, and vomiting. He was initially started on metoclopramide 40mg IV over 24 hours; dose was increased to 60mg with no benefit and later oral baclofen added (10mg three times a day).4 The hiccups responded to baclofen but his sensorium deteriorated likely due to disease progression. He was unable to take oral medications or tolerate nasogastric tube insertion. Since baclofen is available only...
Elizabeth Davies uses palliative care "to explore the potential use of poetry in healthcare". And indeed its use can be much wider. As she points out, "For those who enjoy reading poetry, discussing or writing it can become a means of expressing emotion, making sense of events and putting a biographical story togerther."
That was my experience following the deaths, in a motor vehicle accident, of my eldest son Marcus and his partner Rachael. Verse written, wept over, and repeatedly revised during the year after their deaths was, I'm sure, helpful in my coming to accept, at a 'gut level' as well as intellectually, what had happened.
And it wasn't helpful just to me. When a selection of the verse (1) was published to raise money for a trust in memory of Marcus and Rachael, it also proved useful to some who had suffered similar bereavement, perhaps because the writer had experienced the same hell as them:
"but our souls too
are pierced by a sword." (2)
(1) 'As Well as Joy - Elegies for Marcus and Rachael'; Rachael Gloag and Marcus Fitchett Memorial Medical Education Trust, Dunedin, 1998
(2) Ib.; p. 40. 'The Feast of the Presentation of Jesus in the Temple'.
Many thanks for this interesting article which overviews the historical and social developments in the Western world. With respect to definition of communities in the context of compassionate communities, we defined quite specifically what this is in our article Circles of care: should community development redefine the practice of palliative care?Abel J, et al. BMJ Supportive & Palliative Care 2013;3:383–388. doi:10.1136/bmjspcare-2012-000359. Communities exist in the context of inner and outer networks, supported by the surrounding community. These networks are no longer defined by geographical boundaries as there are forms of support involving digital technology. Support is given in many ways and it is the resilience of these community networks that makes an enormous difference at end of life, as explained by Horsfall et al in their research End of life at home: Co-creating an ecology of care
D Horsfall, A Yardley, R Leonard, K Noonan… - 2015 - researchdirect.westernsydney.edu …
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...
In McCaughan’s qualitative study,(1) I was drawn by two themes identified from interviews with clinicians and relatives of patients with haematological cancers: ‘mismatch between the expectations and reality of home death’ and ‘a preference for hospital death.’ This challenges the established dogma that most people would wish to die at home, if they had the choice.(2)
The paper goes on to posit reasons, namely that patients with haematological cancers can have complicated clinical trajectories, with difficult-to-manage symptoms towards the end of life. Whilst this is true, it can also be more broadly applied to many terminal disease trajectories, in which single organ failure can progress to multi-organ involvement, brittle health and the risk of sudden deterioration. This can be frightening for both the patient and their close ones, hence an emergency call and blue light to A&E. Inpatient symptom control and support may then ineluctably become inpatient terminal care.
In fact, desire for a home death is likely an overstated assertion, particularly as people approach the terminal phase of illness,(3) and particularly in conditions other than cancer.(4) The ideal of a home death may be very different to the reality of managing complex symptoms without the 24-hour access to medical professionals or support available in a hospital or hospice.
The National End of Life Care Intelligence Network identifies death in the ‘usual place of residence’ (home...
Show MoreWe 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...
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