Literature Search - Special Issue #14 (Apr 2024): Assisted Dying Practices

In April 2023, IAHPC published a special issue of its newsletter, ‘Assisted Dying Practices’. The following is an annotated, representative listing of journal articles on the topic published in the past year, primarily in medical journals. Also included are selected articles on three related issues. Only articles for which access to the full text is available online are included.

As acknowledged at the time, in many countries, assisted dying practices have either been decriminalized, legalized, or the issues are being debated in the legislatures. Palliative care (PC) workers may be confronted with, and directly impacted by, these issues. To reiterate, IAHPC believes that no country or state should consider legalizing euthanasia or physician-assisted suicide until it ensures universal access to both PC services and appropriate medications, including opioids for the management of pain and dyspnea.¹

1. ‘International Association for Hospice and Palliative Care Position Statement: Euthanasia and Physician-Assisted Suicide,’ Journal of Palliative Medicine, 2017;20(1):1-7.

Physician Assisted Suicide

1. ‘Euthanasia controversy in China: Do we have the right to die?’ History & Philosophy of Medicine. Posted online 25 January 2024. Full text

   Euthanasia is what some dying patients in China yearn for, but many situations presented in this article show that it is not yet suitable to be carried out in China. In the euthanasia case, the problem that really can test the judge may not be a provision written in the code, but an eternal question from the patient: “Do we have the right to die?”

2. ‘Ensuring patients’ well-deserved right to refuse treatment, not jumping to an “assisted death with dignity,”’ Journal of Korean Medical Science (Korea). Posted online 4 January 2024. Full text

   The assistance or aid of the so-called assisted death with dignity or MAiD may not be something that a large majority of patients actually need. Therefore, medical communities may not be obliged to provide the assistance. However, the right to refuse treatment is crucial for most or all patients and should be presented and guaranteed in a more explicit and extensive form.

3. ‘Medical assistance in dying: A review of Canadian health authority policy documents,’ Global Qualitative Nursing Research (Canada). Posted online 6 May 2023. Full text

   This review of Canadian policy documents developed to guide interdisciplinary MAID practice can support policy makers in developing similar guidance documents in other countries in the process of implementing assisted death. Despite the variability of substantive content across these policy documents, taken collectively, they provide important domains of concern that can be applied to the contexts and cultures associated with various regional-specific policies.

4. ‘Assisted dying: Principles, possibilities, and practicalities. An English physician’s perspective,’ BMC Palliative Care (U.K.). Posted online 13 April 2024. Full text

   Any form of assisted dying will have collateral harmful consequences for both medical care and society in general. The challenge is to find the “least worse” option. A lack of readily available high-quality palliative care will always be coercive, there will always be abuse, the boundaries of the law will always be stretched, and a wrong diagnosis will mean that some people will die unnecessarily.

5. ‘What medical conditions lead to a request for euthanasia? A rapid scoping review,’ Health Science Reports (Iran). Posted online 20 March 2024. Full text

   There is no consensus about the criteria or guidelines that have been set for identifying a patient eligible for euthanasia in different countries although some authors have previously outlined general or nonspecific conditions for euthanasia requests. In this study, the authors have listed and categorized all published records of euthanasia requests around the world into five broad groups.

6. ‘The evolving complexities of MAiD care in Canada from a nursing perspective,’ Global Qualitative Nursing Research. Posted online 29 February 2024. Full text

   This paper provided an interpretive account of registered nurses’ and nurse practitioners’ experiences with the evolving medical assistance in dying (MAiD) legislation. Participants described how they negotiated sensitive conversations about MAiD as part of advance care planning while avoiding critical patient transition times. They described the moral complexities inherent in waivers of consent when patient suffering was no longer visible.

Ethical Issues

7. ‘Euthanasia and assisted suicide in neurological diseases: A systematic review,’ Neurología (Spain), 2024;39(2):170-177. Full text

   Dementia, motor neuron disease, multiple sclerosis and Parkinson’s disease are the neurological diseases that most frequently motivate requests for euthanasia or assisted suicide. Requests related to dementia constitute the largest group, are growing, and raise additional ethical and legal issues due to these patients’ diminished decision-making capacity.

8. ‘When the cause of death does not exist: Time for the WHO to close the ICD classification gap for medical aid in dying,’ eClinicalMedicine (Switzerland). Posted online 23 November 2023. Full text

   The International Classification of Diseases (ICD) of the World Health Organization (WHO) lacks coding for MAiD. Therefore, no robust data adequately monitors worldwide trends that include information on diseases and conditions underlying the patients’ request for assisted dying (“MAiD gap”). Countries with legalised MAiD observe substantial increases in cases, and likely additional countries will allow MAiD in the near future.

9. ‘Response to ‘Medical assistance in dying, palliative care, safety, and structural vulnerability,’’ Journal of Palliative Medicine (Canada). Posted online 14 November 2023. Full text

   This report, signed by 170 scholars, clinicians, and researchers in palliative care (PC) and related fields, refutes the claims made by the previously published ‘Medical assistance in dying, PC, safety, and structural vulnerability.’ That report attempted to argue that structural vulnerability was not a concern in the provision of assisted dying by a selective review of evidence in medical literature and population studies.^1,2

   1. ‘Medical assistance in dying, palliative care, safety, and structural vulnerability,’’ Journal of Palliative Medicine, 2023;26(9):1175-1179. Abstract
   2. ‘Medical assistance in dying, palliative care, safety, and structural vulnerability,’ Journal of Palliative Medicine, 2024;27(1):4. Response to Downar et al article. First page view
10. ‘Canadian family members’ experiences with guilt, judgment and secrecy during medical assistance in dying: A qualitative descriptive study,’ Canadian Medical Association Journal Open (Canada). Posted online 22 August 2023. Full text

    This study provides detailed insights into three unexpected yet common MAiD experiences of Canadian family members: feeling guilt and trauma, being judged, and keeping MAiD secret. MAiD programs could develop or enhance resources for and have conversations with families about managing these challenges. This study may also alert MAiD organizations about helpful information for families.

11. ‘Strength of religious faith and attitude towards euthanasia among medical professionals and opinion makers,’ Journal of Religion & Health (Poland). Posted online 18 July 2023. Full text

    Regardless of the role of religion in their lives, a great majority of medical professionals and most of the group of non-medical professionals considered the withdrawal of futile treatment to be equivalent to euthanasia of the patient. Meanwhile, the persons with greater strength of religious beliefs were decidedly the least likely to regard euthanasia as an appropriate solution even for the terminally ill.

12. ‘Examining assisted suicide and euthanasia through the lens of healthcare quality,’ Irish Journal of Medical Science (Ireland). Posted online 10 June 2023. Full text

    Many people on both sides of the debate to legalise physician-hastened death are motivated by compassion and a desire to provide better end-of-life care for others. Assisted dying may include euthanasia and/or assisted suicide (EAS). It is legal in some jurisdictions and under debate in others including Ireland. EAS is a complex, sensitive and can be an emotive issue; detailed and nuanced examination of the subject is needed.

13. ‘Ethical issue of physician-assisted suicide and euthanasia,’ Journal of Hospice & Palliative Care (Korea). Posted online 1 June 2023. Full text

    With the implementation of Act on Hospice and Palliative Care and Decisions on Life-Sustaining Treatment for Patients at the End of Life, interests of the general public on self-determination right and dignified death of patients have increased markedly in Korea. However, “self-determination” on medical care is misunderstood as decision not to sustain life, and “dignified death” as terminating life before suffering from disease in terminal stage.

14. ‘Assisted suicide and euthanasia in mental disorders: Ethical positions in the debate between proportionality, dignity, and the right to die,’ Healthcare (Italy). Posted online 18 May 2023. Full text

    End-of-life assistance represents an issue of enormous ethical and legal significance. Currently, in the inertia of legislation, an increase in borderline cases may occur, defined as emergency conditions not provided for by law. Since it is precisely the possibility of predicting and preventing extreme situations that deprive them of their exceptional nature, a collective and multidisciplinary effort is essential for the determination of regulatory rules on the matter.

15. ‘Family involvement in euthanasia or physician assisted suicide and dementia: A systematic review,’ Alzheimer’s & Dementia (The Netherlands). Posted online 25 April 2023. Full text

    The articles reviewed show that being a burden to family, especially to children, is a frequently mentioned reason for wanting euthanasia or physician assisted suicide (PAS). They fear the future of living with dementia – the loss of independence and dignity that comes with late-stage dementia, which also underpins their views on euthanasia or PAS. For people with dementia, the permissibility of euthanasia or PAS depends on the stage of the disease.

16. ‘What about us? Experiences of relatives regarding physician-assisted death for patients suffering from mental illness: A qualitative study,’ Culture, Medicine & Psychiatry, 2023(1):237-251 (The Netherlands). Full text

    Relatives ambivalence is characterised by their understanding of the wish to die and at the same time hoping that the patient would make another choice. Interviewees’ experiences regarding the process of the physician assisted death (PAD) request varied, from positive (“intimate”) to negative (“extremely hard”). Some indicated that they wished to be more involved as they believe the road towards PAD should be a joint trajectory.

Implications for Health Professionals

17. ‘“More support, less distress?”: Examining the role of social norms in alleviating practitioners’ psychological distress in the context of assisted dying services,’ Death Studies (Australia). Posted online 10 April 2024. Full text

    A small body of research has highlighted the mental health implications for practitioners. These include emotional pressures, negative feelings and frustration, apprehension and discomfort, and emotional and moral distress. Physicians and nurses are among the health practitioners most often confronted with patients’ requests for assisted dying and may be among those involved in providing it when the request is approved.

18. ‘Palliative care with adequate pain relief challenges the need for euthanasia legislation,’ History & Philosophy of Medicine (Malta). Posted online 9 April 2024. Full text

    As healthcare professionals and policymakers navigate the balance between ethical considerations and alleviating suffering, it becomes their responsibility to ensure that palliative care remains at the forefront as compassionate and holistic support during individuals most vulnerable moments. It is crucial to uphold principles such, as dignity, respect, and patient-centred care in order to affirm the value of each individual’s end-of-life journey.

19. ‘Physicians’ views on the role of relatives in euthanasia and physician-assisted suicide decision-making: A mixed-methods study among physicians in The Netherlands,’ BMC Medical Ethics. Posted online 5 April 2024. Full text

    Involving relatives in euthanasia and physician-assisted suicide (EAS) decision-making is common practice for physicians in The Netherlands. Physicians feel that it is important to consider relatives’ opinions as relatives need to continue with their lives, relatives might need additional support, and physicians want to perform EAS in harmony for everyone who is involved. Involving relatives does not mean that relatives have a say in the ultimate decision about EAS.

20. ‘Perspectives of Canadian health leaders on the relationship between medical assistance in dying and palliative and end-of-life care services: A qualitative study,’ Canadian Medical Association Journal (Canada). Posted online 26 February 2024. Full text

    This study highlights the wide-ranging views held by health leaders regarding the optimal relationship between MAiD and palliative and end-of-life care (PEoLC) in Canada. In Canada, where MAiD eligibility has been extended to include people without a terminal condition, options are needed for patients to be able to access MAiD only services, PEoLC-only services, and both MAiD and PEoLC services.

21. ‘Practitioners’ experiences with 2021 amendments to Canada’s medical assistance in dying law: A qualitative analysis,’ Palliative Care & Social Practice (Canada). Posted online 25 December 2023. Full text

    This study illustrates the importance of adequate support for both practitioners and the system as a whole. Research showed some areas of inadequate guidance; it also found leadership, dedication and resilience from MAiD assessors/providers. As a lesson for other jurisdictions, this research illustrates how polycentric regulation functions and shows the need for strong leadership and coordination by government in implementing MAiD into the healthcare system.

22. ‘Supporting nursing roles in medical assistance in dying: Development and evaluation of an evidence-based reflective guide,’ PEC Innovation (U.S.) . Posted online 15 December 2023. Full text

    The MAiD Reflective Guide for nurses is one strategy for preparing nurses for the emotional, moral, and practice implications of MAID-related care. Preliminary evidence suggests that it is effective in supporting personal insights, helping nurses to think about their moral positioning, and preparing them for practice related to MAID. The overall welcoming tone of the Guide led to nurses completing it to report that it promoted a sense of calm and reflection.

23. ‘Voluntary assisted dying/euthanasia: Will this have an impact on cancer care in future years?’ Current Treatment Options in Oncology (Australia). Posted online 3 August 2023. Full text

    A wide range of variables needs to be considered including demographic factors, diagnoses, local cultural factors, and the legislative frameworks in place. The authors present a synthesis of recently available published literature and empirical data collected following legislative change to enable medically hastened death ((MHD) in Victoria, Australia, to explore in detail the potential impact of MHD with a focus on patients/families and professional groups.

24. ‘Improving palliative care and medical assistance in dying practice in Canada: How patients-partners could contribute to continuing medical education, Palliative Medicine Reports. Posted online 21 April 2023. Full text

    Any continuing medical education (CME) innovation that could help clinicians to learn about complex issues of palliative care (PC) and MAiD practice is welcome. The role of patient-partners is constantly growing in healthcare and medical education. Based on the authors’ recent CME experiences, they reflected on how patient engagement could become an interesting approach to address the multiple and complex aspects of PC and MAiD practice.

25. ‘ICU health care workers opinion on physician-assisted-suicide and euthanasia: A French survey,’ Annals of Intensive Care (France). Posted online 18 March 2023. Full text

    In this survey, with two-thirds of non-physicians ICU participants, a vast majority supports the legalization of active medical assistance in dying in France (euthanasia and/or physician-assisted suicide). However, this survey shows significantly different opinions among physicians and non-physicians healthcare workers and whether the patient involved in the issue of the end-of-life is hospitalized in the ICU or not.

26. ‘An international expansion in voluntary euthanasia/assisted dying: The implications for nursing,’ International Nursing Review, 2023;70(1):11-126 (New Zealand). Full text

    Despite a long history of assisted dying and the continued expansion of these practices, limited and highly variable nursing policy highlights the lack of clear guidance available to nurses. The growing inclusion of nurse practitioners and recognition of registered nurse involvement in the care of individuals on an assisted dying pathway merits clearer support from regulatory authorities and professional organisations.

27. ‘Identifying practical clinical problems in active euthanasia: A systematic literature review of the findings in countries where euthanasia is legal,’ Palliative & Supportive Care (Japan). Posted online 9 January 2023. Full text

    After reviewing the specific problems reported to be associated with euthanasia in each country, five problems were extracted: many ambiguous conditions with room for interpretation, insufficient assurance of voluntariness, response to requests for euthanasia due to psychological distress, conscientious objection, and noncompliance by medical professionals.

Desire to Hasten Death

28. ‘Clinical guidelines for voluntarily stopping eating and drinking (VSED),’ Journal of Pain & Symptom Management (U.S.). Posted online 21 June 2023. Full text

    VSED has emerged as a topic of increasing interest for patients who face a diminishing quality of life. It is an option for those with serious illness that is legal in every state in the country, but for which there are few published comprehensive guidelines – and none specific to the American medical system – even as public awareness and the number of inquiries regarding this action increase.

29. ‘Why people think they might hasten their death when faced with irremediable health conditions compared to why they actually do so,’ Omega – Journal of Death & Dying (U.S.), 2023;87(4):1109-1126. Full text

    Along with the authors’ finding that social and emotional factors are as or are more important than physical ones in influencing people to want to hasten their death, this study suggests that loved ones, caregivers, policy makers, and medical providers may want to again review what compassionate understanding and support looks like for people wanting to hasten their death because of irremediable health conditions.

30. ‘Handling the desire to die – evaluation of an elective course for medical students,’ BMC Medical Education (Germany). Posted online 18 March 2024. Full text

    An open and respectful approach to patients’ expressed desires to die enables care to be tailored to individual needs. Physicians should be sensitised and trained for such conversations. The elective course presented trains skills, deepens knowledge and thus provides self-confidence for the topic by practicing knowledge about the background of desires to die and properly communicating with patients about it.

31. ‘A bioethical perspective on the meanings behind a wish to hasten death: A meta-ethnographic review,’ BMC Medical Ethics (Portugal). Posted online 27 February 2024. Full text

    This review highlights that the wish to hasten death has multiple meanings and may be affected by several factors, such as physical symptoms, psychological/existential suffering, loss of dignity, and feeling a burden to others. While often not mentioned explicitly or with enough in-depth, these meanings relate to the ethical principles of vulnerability, dignity, and autonomy.

32. ‘When people facing dementia choose to hasten death: The landscape of current ethical, legal, medical, and social considerations in the United States,’ The Hastings Center Report, 2024;54(S1):S11-S21. Full text

    Some individuals facing dementia contemplate hastening their own death: weighing the possibility of living longer with dementia against the alternative of dying sooner but avoiding the later stages of cognitive and functional impairment. This resonates with an ethical and legal consensus in the U.S. that individuals can voluntarily choose to forgo life-sustaining interventions and also that medical professionals can support these choices even when they will result in an earlier death.

33. ‘“I’m done”: A patient’s wish and will to die,’ Palliative & Supportive Care (U.S.). Posted online 22 December 2023. Full text

    A wish for a hastened death is prevalent in the cancer population. Although it is debated whether it should be screened for, once declared, treatable contributing factors should be addressed, including psychological, social, and physical suffering. There is no clear method of approaching a patient with, but engaging in open discussion, addressing symptoms, and considering the return of patient autonomy are indicated.

Palliative Sedation

34. ‘Continuous palliative sedation until death: A qualitative study of palliative care clinicians’ experiences,’ BMC Palliative Care (Canada). Posted online 18 April 2024. Full text

    This study provides novel insights into continuous palliative sedation (PS) as a response to the suffering experienced by patients, families, and palliative care clinicians. Additionally, it highlights the central role of family and clinician suffering within the context of continuous PS practice, rather than considering it as peripheral. This study also enhances understanding of the interplay between continuous PS and assisted dying.

35. ‘Existential suffering as an indication for palliative sedation: Identifying and addressing challenges,’ Palliative & Supportive Care (U.S.). Posted online 29 February 2024. Full text

    Improving the care of patients with existential suffering in palliative care requires better instruments to evaluate existential and other nonphysical forms of suffering, a greater understanding of the potential overlap among various forms of suffering, and the continued development of alternatives to palliative sedation (PS). Greater clarity and capability regarding approaches to existential suffering may change the conversation about whether and when PS is indicated for these patients.

36. ‘Practices of and perspectives on palliative sedation among palliative care physicians in Ontario, Canada: A mixed-methods study,’ Palliative Medicine Reports. Posted online 13 February 2024. Full text

    This study explored palliative care providers’ experiences with palliative sedation (PS), particularly for the five years after the legalization of MAiD. It presented the following themes: 1) lack of standardization; 2) differing definitions; 3) logistical challenges; 4) perceived “back-up” to MAiD; and, 5) tool of the most responsible physician. There was significant variability in terms of how participants defined PS and its frequency of use, which is consistent with available literature internationally.

37. ‘Revised European Association for Palliative Care recommended framework on palliative sedation: An international Delphi study,’ Palliative Medicine. Posted online 31 January 2024. Full text

    The revised framework including proposed assessment tools for monitoring, a comprehensive table of medications, dosages and administration forms, serves as comprehensive and soundly developed information for healthcare professionals on the use of palliative sedation as well as for medical associations and health policy decision-makers. Appraisal Guideline Research & Evaluation II is an international tool to assess the quality and reporting of practice guidelines.

    Related:

    37.2 ‘Palliative sedation – revised recommendations [of the Swiss Society of Palliative Care],’ Swiss Medical Weekly. Posted online 15 February 2024. Full text

Doctrine of Double Effect

38. ‘How the doctrine of double effect rhetoric harms patients seeking voluntary assisted dying,’ Journal of Bioethical Inquiry (Australia). Posted online 29 March 2024. Full text

    Victoria’s Voluntary Assisted Dying Act 2017 became the first state law to permit VAD in Australia under limited circumstances. Before this, many palliative care physicians relied on the doctrine of double effect (DDE) to justify the use of pain relievers for terminally ill patients that were known to hasten death. The DDE claims that there is a morally significant difference between intending evil and merely foreseeing some bad side-effect will occur as a result of one’s actions.

39. ‘Navigating ethical considerations in palliative sedation: A comprehensive discussion on the principle of double effect and compassionate end-of-Life interventions,’ Journal of Palliative Care & Medicine (Canada). Posted online 25 January 2024. Full text

    Despite ongoing concerns and ethical considerations, recent evidence supports the safety and effectiveness of properly titrated palliative sedation. The continued reliance on the ethical framework provided by the principle of double effect guides healthcare professionals in justifying this practice, ensuring that the positive goal of relieving suffering takes precedence over any foreseen negative consequences.