published between 2018 and 2021
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 …
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...
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.