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Medical assistance in dying: the downside
  1. John Richard Attia1,2,
  2. Christine Jorm3 and
  3. Brian Kelly1
  1. 1 Division of Medicine, Hunter New England Local Health District, New Lambton, New South Wales, Australia
  2. 2 Faculty of Health and Medicine, The University of Newcastle, Callaghan, New South Wales, Australia
  3. 3 NSW Regional Health Partners, Hunter New England Local Health Network - HNELHN, New Lambton, New South Wales, Australia
  1. Correspondence to Professor John Richard Attia, SMPH, The University of Newcastle, New Lambton Heights, NSW 2305, Australia; john.attia{at}newcastle.edu.au

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Euthanasia is the deliberate administration of medications with the explicit intention of ending life, whereas physician assisted dying is the prescription or supply of drugs to enable the patient to end their own life.1 We use the term ‘medical assistance in dying’ (MAID) to refer to both. The rationale for MAID is usually based on two principles:

  • Compassion, that is, to relieve unbearable suffering.

  • Autonomy, that is, the right to self-determination.

Such individual rights however exist within a broader community, familial and societal context. Philosopher Daniel Callaghan stated: “Euthanasia is not a private matter of self-determination. It is an act that requires two people to make it possible and a complicit society to make it acceptable”.2 We present our perspective on the (often unacknowledged) implications of MAID for the family, physician and the healthcare system. A MEDLINE review was done with snowballing that is, following up reference lists from papers identified.

Why patients might request MAID

Several factors drive patient requests for MAID, including the fear of becoming a burden to others, depression and feelings of hopelessness, loss of identity or dignity, feeling isolated, being tired of existence, and fear of uncertainty; it is of interest that the fear of pain more than pain itself was also a driver.3–5 These studies explored the concerns of those with a terminal illness who usually did not have access to MAID and were considering a hypothetical situation. Initial experience from the Dying with Dignity programme in the USA6 and the Medical Assistance in Dying programme in Canada7 find that those dying through MAID are predominantly motivated by fear of the loss of control and autonomy. Interestingly, most were educated, higher socioeconomic level Caucasians (>90%).7 It has been suggested that ‘Being in control has become the ultimate moral virtue of Western citizens. We desire full control not only of our life but of our death as well’.8

Monica Renz, reflecting on many years of experience at the St Gallen hospice, writes that those who cannot relinquish control have more existential distress and anguish, both personally and for their families.9 It has been argued that a physician’s role is in part to facilitate some sense of acceptance of death, without which there is unlikely to be a sense of peace or comfort.10 In many cases, a request to hasten death is a call for help, to open discussion about death with relatives and clinicians who may be reluctant to do so.8 The wish for MAID is often ambivalent and fluctuates; it appears that holding the possibility of MAID in one’s mind may be part of the coping mechanism for uncertainty; one may have positive views about MAID without wishing to avail oneself of the possibility.11

Effects of MAID on the family

Systematic studies on the possible effects on family members are few. One major study of over 500 Dutch patients with cancer found that that family and friends of those who died by euthanasia had less traumatic grief symptoms, post-traumatic stress reactions and current grief than those who died of natural causes.12 However, this study was carried out 2–8 years after the death and the two family/friend groups were significantly different; those in the euthanasia group were less religious, more educated and more distant from the deceased. A thematic synthesis of studies13 found numerous negative consequences of MAID. Families were often involved in the MAID decision making, with the potential for creation or aggravation of family conflict when opinions differ. Even when they support the decedent’s wish for MAID, family members can feel conflicted, torn between hastening death and wishing for more time. This leads to regret, ethical questions, and fear of being judged or disapproved of. Consequently family members are unwilling to share their experiences, with further isolation and in some studies, higher rates of post-traumatic stress than those involved in natural deaths. Some family members admitted secretly hoping that MAID would be delayed and expressed gratitude when it was refused or a natural death supervened.13

The potential for family division, misunderstandings and conflict is heightened by the recent Voluntary Assisted Dying legislation in the State of Victoria. Unlike the Dutch legislation, the Victorian legislation does not require the individual’s family to be notified of a MAID request. This elevates the autonomy of the individual above any other consideration and ignores their identity within the community of friends and family; there is the potential to make their grief even more complex.4

Effects of MAID on physicians

Studies of physicians who participate in MAID consistently show detrimental effects. There is a conflict between respect for patient autonomy and wishes, and the call to preserve and value life.14 A systematic review demonstrated that among physicians who participated in MAID, 30%–50% were left conflicted, uneasy, and uncomfortable with their role; 15%–20% reported significant ongoing adverse personal impact.15 One felt it had left ‘an indelible mark’ on his soul and that something was ‘broken’ in his spirit. Another study1 showed that although 52% of physicians had feelings of comfort with euthanasia, 75% also had feelings of discomfort, testifying to mixed emotions and inner conflict. It is noteworthy that this was in a group of practitioners who had voluntarily elected to participate in MAID. Experience in Quebec found that although ~66% of physicians had initially indicated willingness to participate,~60% were refusing to participate when resurveyed 18 months after legalisation, largely due to the emotional and clinical burden.16 Another study discovered adverse effects even in other non-physicians indirectly involved through housekeeping, transportation, and medical records departments.7

Effects of MAID on the healthcare system

MAID does not fit with the WHO definition of palliative care and is misaligned with the ethos of medical care and its Judeo-Christian roots. Indeed, it is significant that all major governance bodies have position statements explicitly stating MAID should not be part of palliative care practice; this includes the European Association for Palliative Care,17 the International Association for Hospice and Palliative Care,18 the Royal Australasian College of Physicians,19 and the Australian and New Zealand Society of Palliative Medicine.20

Canadian physicians warn of the risks of increasing government intervention in the nature of palliative care. When hospices in Quebec and British Columbia opted out of MAID, funding was threatened.21 Such interventions would fundamentally change the practice of palliative care. The potential exists to open it up to financial pressures from an already overburdened healthcare system, for example to ‘expedite’ discharges. This reinforces the risk identified by one systematic review that MAID might become a less costly and less time-consuming substitute for optimal palliative care.22 Such uncertainties in the nature of what is palliative care may also influence career choices; for example, the number of registrars entering palliative care in Quebec dropped after MAID legalisation.21

Legislative requirements have proved ineffective in ensuring governance of MAID in the medical system. For example, despite the requirement for written consent in the Netherlands over 20% of MAID deaths had none. Similarity, despite reporting requirements, nearly half of all MAID deaths in Belgium were improperly recorded.23

Synthesis

The request for MAID may represent a complex dynamic within the patient, their family and his/her social structures. It also has complex ramifications for the physician and the wider medical community. Our aim should be to elicit the underlying causes driving any request and undertake the necessary steps to address them. This requires clinicians to discuss patient concerns, particularly the dimensions of psychological distress at the end of life including existential dilemmas and anxieties.19

A prime driver for MAID requests is the effort to exert control. The reality is we are not in control of all our circumstances during life; why pretend this is so in death? In the same way physical pain is a signal to the body to pay attention to something, the psychic pain of existential distress is a prompt to the individual to face transcendent eternal questions: What did it all mean? What I am leaving behind? Is there anything more? We do a greater service to our patients by helping them tackle these important questions rather than ignore them.

Considering the real (and potential) adverse effects of MAID on families, physicians and the palliative and healthcare systems, our vocation rather should stimulate us to have the time and courage to open these potentially difficult and challenging conversations.

References

Footnotes

  • Contributors JRA drafted the manuscript; CJ and BK critically reviewed it. All authors take responsibility for the content.

  • Funding The authors have not declared a specific grant for this research from any funding agency in the public, commercial or not-for-profit sectors.

  • Competing interests None declared.

  • Patient consent for publication Not required.

  • Provenance and peer review Commissioned; internally peer reviewed.