What About Us? Experiences of Relatives Regarding Physician-Assisted Death for Patients Suffering from Mental Illness: A Qualitative Study

Physician-assisted death (PAD) for patients suffering from mental illness is legally permitted in the Netherlands. Although patients’ relatives are not entrusted with a legal role, former research revealed that physicians take into account the patient’s social context and their well-being, in deciding whether or not to grant the request. However, these studies focussed on relatives’ experiences in the context of PAD concerning patients with somatic illness. To date, nothing is known on their experiences in the context of PAD concerning the mentally ill. We studied the experiences of relatives with regard to a PAD request by patients suffering from mental illness. The data for this study were collected through 12 interviews with relatives of patients who have or had a PAD request because of a mental illness. We show that relatives are ambivalent regarding the patient’s request for PAD and the following trajectory. Their ambivalence is characterised by their understanding of the wish to die and at the same time hoping that the patient would make another choice. Respondents’ experiences regarding the process of the 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. To leave them out during such an important event is not only painful, but also harmful to the relative as it could potentially complicate their grieving process. Professional support during or after the PAD process was wanted by some, but not by all.

We Should Widen Access to Physician-Assisted Death

Typical philosophical discussions of physician-assisted death (“pad”) have focused on whether the practice can be permissible. We address a different question: assuming that pad can be morally permissible, how far does that permission extend? We will argue that granting requests for pad may be permissible even when the pad recipient can no longer speak for themselves. In particular, we argue against the ‘competency requirement’ that constrains pad-eligibility to presently-competent patients in most countries that have legalized pad. We think pad on terminally ill, incapacitated patients can be morally permissible in cases where advance directives or suitable surrogate decision-makers are available, and should be legally permissible in such cases as well. We argue that this view should be accepted on pain of inconsistency: by allowing surrogate decision-makers to request withdrawal of life-sustaining care on behalf of patients and by allowing patients to request pad, we rule out any plausible justification for imposing a competency requirement on pad.

The Impact of Health Literacy and Religiosity on Attitudes Towards Physician-Assisted Death

The aim of the current study was to examine the relationship between functional health literacy and religiosity regarding attitudes towards physician-assisted death (PAD). Of participants, the majority were female (62.6%) and non-Hispanic White (79.6%), and ages ranged from 19 to 83 (M = 37.81, SD = 12.55). As measured by the Newest Vital Sign, 82.6% (n = 219) of individuals within the current sample had adequate functional health literacy, while 10.6% (n = 28) scored within the “possibly limited” range, and 6.8% (n = 18) scored within the “highly limited” range. There was a positive association between religiosity and age (r = .21, p < .001), and older participants were more likely to endorse religious beliefs and/or activities. There was a significant association between greater acceptance of attitudes towards PAD and functional health literacy (r = .17, p < .01), indicating that those with higher health literacy have more positive attitudes towards PAD. There was no significant association between attitudes towards PAD and age (r = -.02, p > .05) or education (r = -.05, p > .05). Similarly, attitudes did not differ by gender (t (256) = -.66, p > .05) or by race/ethnicity, (F(5, 253) = .73, p > .05). Of note, functional health literacy may be particularly important to monitor in this context, as several studies (i.e., Kobayashi et al., 2015) have shown that health literacy may decrease with mild cognitive impairment and may therefore provide important information regarding older adults with this condition.

The Right to Die and the Communal Body - An examination of the media influence, ethical principles and stakeholder attitudes towards assisted dying in New Zealand from a sociology in bioethics perspective

<p>This thesis is based on a sociology in bioethics approach which seeks to demonstrate that the current rhetoric being used by parties on both sides of the debate is no longer useful for the realities that people are expressing or living. In sociology, the assisted dying literature has tended to focus on the social, political, economic and cultural contexts within which it is sought, and to understand the range of definitions that are used to conceptualise a good death. Bioethics literature, on the other hand, has removed the socially situated individual from ethical discussions of assisted dying. By engaging with an idea of the communal body, interpreted as a moral community who experience intersubjective realties, this thesis provides a platform to combine these two perspectives. It seeks to examine the range of possibilities for understanding the socially situated and relationally autonomous individual requesting medically-assisted death. The debate in New Zealand surrounding the right-to-die was brought to the fore in 2015 when terminally ill Lecretia Seales took a case to the High Court. Her argument sought a clarification of the current law, which would have allowed her doctor to provide life-ending medication should her pain and suffering become unbearable. Seales’ case was unsuccessful but it, along with the following events, has succeeded in bringing attention about end-of-life choices to the New Zealand public and media. The current End of Life Choice Bill, which stands before Parliament and was proposed by Member of Parliament (MP) David Seymour of the ACT Party, will once again provide a chance for these issues to be voted on by New Zealand’s elected officials. A critical analysis of provincial New Zealand media articles, across the time periods between 2002-2005 and 2012-2015, has sought to highlight the ways the media influences public perceptions of the debate and emphasises the limited discourse available. These years represent significant periods during which events in time led the media to variably describe these deaths from murders to mercy killings. Further thematic analysis (TA) of 12 interviews undertaken with stakeholders in the field of medically-assisted dying show discrepancies between lay public knowledge and informed stakeholder views. Overall, this thesis situates the communal body within the right-to-die argument in New Zealand. The results lend themselves to support a view that the current lack of available discourse has for the most part irrevocably rendered a divide between those who campaign for change and those who do not. In this thesis, I argue that by positioning itself within a sociology in bioethics approach, the right-to-die debate in New Zealand will be afforded a clearer understanding.</p>

The Right to Die and the Communal Body - An examination of the media influence, ethical principles and stakeholder attitudes towards assisted dying in New Zealand from a sociology in bioethics perspective

<p>This thesis is based on a sociology in bioethics approach which seeks to demonstrate that the current rhetoric being used by parties on both sides of the debate is no longer useful for the realities that people are expressing or living. In sociology, the assisted dying literature has tended to focus on the social, political, economic and cultural contexts within which it is sought, and to understand the range of definitions that are used to conceptualise a good death. Bioethics literature, on the other hand, has removed the socially situated individual from ethical discussions of assisted dying. By engaging with an idea of the communal body, interpreted as a moral community who experience intersubjective realties, this thesis provides a platform to combine these two perspectives. It seeks to examine the range of possibilities for understanding the socially situated and relationally autonomous individual requesting medically-assisted death. The debate in New Zealand surrounding the right-to-die was brought to the fore in 2015 when terminally ill Lecretia Seales took a case to the High Court. Her argument sought a clarification of the current law, which would have allowed her doctor to provide life-ending medication should her pain and suffering become unbearable. Seales’ case was unsuccessful but it, along with the following events, has succeeded in bringing attention about end-of-life choices to the New Zealand public and media. The current End of Life Choice Bill, which stands before Parliament and was proposed by Member of Parliament (MP) David Seymour of the ACT Party, will once again provide a chance for these issues to be voted on by New Zealand’s elected officials. A critical analysis of provincial New Zealand media articles, across the time periods between 2002-2005 and 2012-2015, has sought to highlight the ways the media influences public perceptions of the debate and emphasises the limited discourse available. These years represent significant periods during which events in time led the media to variably describe these deaths from murders to mercy killings. Further thematic analysis (TA) of 12 interviews undertaken with stakeholders in the field of medically-assisted dying show discrepancies between lay public knowledge and informed stakeholder views. Overall, this thesis situates the communal body within the right-to-die argument in New Zealand. The results lend themselves to support a view that the current lack of available discourse has for the most part irrevocably rendered a divide between those who campaign for change and those who do not. In this thesis, I argue that by positioning itself within a sociology in bioethics approach, the right-to-die debate in New Zealand will be afforded a clearer understanding.</p>

What’s suffering got to do with it? A qualitative study of suffering in the context of Medical Assistance in Dying (MAID)

Background Intolerable suffering is a common eligibility requirement for persons requesting assisted death, and although suffering has received philosophic attention for millennia, only recently has it been the focus of empirical inquiry. Robust theoretical knowledge about suffering is critically important as modern healthcare provides persons with different options at end-of-life to relieve suffering. The purpose of this paper is to present findings specific to the understanding and application of suffering in the context of MAID from nurses’ perspectives. Methods A longitudinal qualitative descriptive study using semi-structured telephone interviews. Inductive analysis was used to construct a thematic account. The study received ethical approval and all participants provided written consent. Results Fifty nurses and nurse practitioners from across Canada were interviewed. Participants described the suffering of dying and provided insights into the difficulties of treating existential suffering and the iatrogenic suffering patients experienced from long contact with the healthcare system. They shared perceptions of the suffering that leads to a request for MAID that included the unknown of dying, a desire for predictability, and the loss of dignity. Eliciting the suffering story was an essential part of nursing practice. Knowledge of the story allowed participants to find the balance between believing that suffering is whatever the persons says it is, while making sure that the MAID procedure was for the right person, for the right reason, at the right time. Participants perceived that the MAID process itself caused suffering that resulted from the complexity of decision-making, the chances of being deemed ineligible, and the heighted work of the tasks of dying. Conclusions Healthcare providers involved in MAID must be critically reflective about the suffering histories they bring to the clinical encounter, particularly iatrogenic suffering. Further, eliciting the suffering stories of persons requesting MAID requires a high degree of skill; those involved in the assessment process must have the time and competency to do this important role well. The nature of suffering that patients and family encounter as they enter the contemplation, assessment, and provision of MAID requires further research to understand it better and develop best practices.

Improving end-of-life conversations in the post-MAiD era

Legalizing medical assistance in dying (MAiD) has transformed how palliative and hospice care providers (PHCPs) engage in end of life conversations with patients and their loved ones. We do not currently know how PHCPs in the Toronto area have experienced this tremendous shift, and what challenges they have faced in transforming their practice to accommodate MAiD conversations. We must understand the unique challenges faced by PHCPs so that we can improve the education, resources, and supports available to these essential healthcare providers. We also must ensure that Canadians receive the highest quality care at the end of life, whether or not they choose to pursue a medically assisted death. To examine these unique challenges, I interviewed 22 PHCPs to document their experiences of engaging in end-of-life conversations in the post-MAiD era. Participants included physicians, nurses, social workers, and other allied health professionals employed in faith-based and secular institutions. Their personal beliefs about MAiD varied widely; some identified as conscientious objectors, while others actively engaged in MAiD assessment and provision. Initial thematic analysis revealed that challenges include translating the federal legislation into medical practice; navigating inefficient institutional policies and role ambiguity; developing conversation techniques to share MAiD information with patients and families in a balanced way that is informative yet uncoercive; and, navigating the ethical and organizational issues that arise when patients with declining capacity pursue MAiD. Finally, PHCPs shared personal experiences of burnout, emotional weight, and stigma. Understanding how these factors impact the work and lives of PHCPs allows us to develop targeted strategies to improve the institutional policies surrounding MAiD conversations, referrals, and procedures, as well as decrease the negative personal and emotional consequences of engaging in end-of-life conversations in the post-MAiD era.

Attitudes Toward End-Of-Life Decisions Other Than Assisted Death Amongst Doctors in Northern Portugal

Background Doctors often deal with end-of-life issues other than assisted death, such as incompetent patients and treatment withdrawal, including food and fluids. Methods A link to a questionnaire was sent by email three times, at intervals of one week, to the doctors registered in the Northern Section of the Portuguese Medical Association. Results The questionnaire was returned by 1148 (9%) physicians. This study shows that only a minority of Portuguese doctors were willing to give one or more drugs in lethal doses to cognitively incompetent patients with an incurable, advanced, and progressive disease at the request of a family member or other close person, and even less would do it on their own initiative. Concerning the withdrawal of support of life measures in advanced and progressive diseases at the patient’s request, most doctors were in favor, but much fewer doctors agreed with the suspension of supportive life measures at the request of a family member, another close person, or by their own unilateral decision. However, concerning the suspension of food and fluids, fewer agreed with that action. Portuguese doctors favor the administration of drugs for suffering control, even foreseeing they could shorten life, Conclusion Most doctors in this study respect patients’ autonomy, but do not agree with measures decided by others that have an impact on patients’ survival. They also agree with the administration of drugs for suffering control, even considering the possibility of shortening life.

9. The end of life

This chapter deals with key legal and ethical issues surrounding end-of-life decisions, with particular reference to physician-assisted death, such as euthanasia. Suicide and assisted suicide, administration of pain relief, and futility are considered. Relevant legislation such as the Suicide Act 1961 (as amended by the Coroners and Justice Act 2009), the Human Rights Act 1998, and the Mental Capacity Act 2005 are discussed. The chapter examines several bioethical principles, including sanctity-of-life and quality-of-life debates; autonomy, beneficence, and medical paternalism; personhood, palliative care, and the double effect doctrine. Finally, it considers human rights issues, treatment requests, incompetent patients, prolonged disorders of consciousness, and locked-in syndrome. Recent cases are considered.