What do health care professionals want to know about assisted dying? Setting the research agenda in New Zealand.

BACKGROUND: New Zealand recently introduced law permitting terminally ill people to request and receive assisted dying (AD) in specified circumstances. Given the nature and complexity of this new health service, research is vital to determine how AD is operating in practice. OBJECTIVE: To identify research priorities regarding the implementation and delivery of AD in New Zealand. METHODS: Using an adapted research prioritisation methodology, the researchers identified 15 potential AD research topics. A mixed-methods survey of health professionals was undertaken where respondents were asked to rate the 15 topics according to the relative importance for research to be conducted on each issue. Respondents could also suggest additional research areas, and were invited to participate in a follow-up interview. RESULTS: One hundred and nineteen respondents completed the survey. 31% had some experience with AD. The highest rated research topic was the 'effectiveness of safeguards in the Act to protect people'; the lowest rated topic was research into the 'experiences of non-provider (e.g., administrative, cleaning) staff where assisted dying is being provided'. Respondents suggested 49 other research topics. Twenty-six interviews were conducted. Thematic analysis of interview data and open-ended survey questions was undertaken. Six research themes were identified: general factors related to the wider health system; the experiences of health care providers at the bedside; medico-legal issues; the impact of AD; experiences on the day of dying; and the overall effectiveness of the AD system. Key issues for stakeholders included safety of the AD service; ensuring access to AD; achieving equity for 'structurally disadvantaged' groups; and ensuring the well-being of patients, families/whanau, providers and non-providers. CONCLUSIONS: Based on early experiences of the implementation of the AD service, health professionals provide important insights into what research should be prioritised post-legalisation of AD. These findings can be used to shape the research agenda so that research may inform law, policy and best practice.

Dirty work: well-intentioned mental health workers cannot ameliorate harms in offshore detention.

Professional providers of mental health services are motivated to help people, including, or especially, vulnerable people. We analyse the ethical implications of mental health providers accepting employment at detention centres that operate out of the normal regulatory structure of the modern state. Specifically, we examine tensions and moral harms experienced by providers at the Australian immigration detention centre on the island of Nauru. Australia has adopted indefinite offshore detention for asylum-seekers arriving by boat as part of a deterrence strategy that relies on making detainment conditions harsh. This has known deleterious mental health effects. As a token to fiduciary care obligations, Australia employs mental health professionals to work on Nauru. These providers are often motivated to make a positive difference for detainees' lives. We examine the overall impact of the providers' work with detainees and the implications of their presence. The strongest evidence supports that the small mitigation of harms offered by these providers does not outweigh the harms of supporting a system designed to perpetuate human suffering. For mental health professionals considering working in offshore detention, we offer specific topics to scrutinise and weigh prior to employment. Because optimising detainee's mental health is beyond the capacity of individual providers, we call for the organisations standardising and supporting mental health professionals to oppose employment of their associates in offshore detention. Lessons from this case study are generalisable to other jurisdictions to help inform organisations that licence and support mental health providers and individual providers considering work in similar settings.

Winging it: a qualitative study of knowledge-acquisition experiences for early adopting providers of medical assistance in dying.

Background: Medical Assistance in Dying (MAID) was legalized in Canada without a designated period for implementation. Providers did not have access to customary alternatives for training and mentorship during the first 1-3 years after legalization. Objective: To report on how doctors prepared for their first provision of MAID in the early period after legalization in Canada. Design: Qualitative research design within an interpretive phenomenological theoretical framework. We asked participants to describe their experiences preparing for first MAID provision. Analysis of transcripts elicited themes regarding training and information desired by early adopters for provision of newly legalized MAID. Participants: Twenty-one early adopting physician-providers in five Canadian provinces were interviewed. Results: Few formal training opportunities were available. Many early-adopting providers learned about the procedure from novel sources using innovative methods. They employed a variety of strategies to meet their needs, including self-training and organizing provider education groups. They acknowledged and reflected on uncertainty and knowledge gained from unexpected experiences and missteps. Key phrases from participants indicated a desire for early training and mentorship. Limitations: This study included only the perspective of physicians who were providers of MAID. It does not address the training needs for all health practitioners who receive requests for assisted death nor report the patient/family experience. Conclusion: The Canadian experience demonstrates the importance of establishing accessible guidance and training opportunities for providers at the outset of implementation of newly legalized assisted dying.

The End of Life Choice Act: a proposed implementation and research agenda.

AIM: This article outlines the End of Life Choice Act 2019. It highlights some of the key implementation issues to ensure the system operates safely and equitably after the Act comes into force. It also identifies priorities for research to ensure issues are detected and provision of assisted dying (AD) is monitored. METHOD: We reviewed the End of Life Choice Act, assisted dying implementation literature and governmental reports. RESULTS: Effective system implementation depends on infrastructure, oversight and funding. In terms of service provision, we make recommendations about training for all health practitioners and providing practitioners; the nuances of discussing the "wish to hasten death"; conscientious objection; cultural safety for Maori; and minimising the complexity of delivering assisted dying practice. Structured research is needed to understand how the assisted dying system is operating. CONCLUSION: This article contributes by identifying core issues for practitioners, patients and policymakers. Implementation is an ongoing process that continues after the Act starts. Data are required to know whether access is equitable, who is choosing to make use of the law, whether providers are well informed and whether the safeguards are working as intended. The implications of how the Act is implemented are significant for patients, whanau, health professionals and society.

Because it was new: Unexpected experiences of physician providers during Canada's early years of legal medical assistance in dying.

Implementing newly legalized euthanasia or assisted dying presents challenges. The procedure is high-stakes and irreversible and the context is controversial and associated with high emotions and strong opinions. This qualitative study reports unexpected experiences of twenty-one medical doctors who provided Medical Assistance in Dying (MAID) in the first years after legalization in Canada. The phrase 'because it was new' occurred multiple times as doctors attributed unanticipated experiences to the lack of individual and collective experience or knowledge. Positively viewed surprises included increased awareness of palliative care and an unexpected personal sense of fulfillment from helping others. Negative surprises were attributed multiple factors including ambiguously phrased legislation, systems issues and individual inexperience. Participants described issues such as technical difficulties around provision, provider anxiety, logistical snags and inability to adequately counsel and guide families. Participants expressed desire for more guidance, mentoring, training, and team communication. This article draws on phenomenological analysis of data to present providers' accounts of their experiences in the Canadian context. This will assist new providers and jurisdictions in anticipating and preparing for circumstances that were unexpected for the first cohort.

The discursive context of medical aid in dying: A paradox of control?

Individual agency is central to late modern and neoliberal concepts of the self and notions of a good death. Assisted dying can be understood as a reflection of these ideas in that control over death resides with the individual. The aim of this article is to explore individual agency and control and employ concepts of biopower and freedom to illustrate the paradoxes inherent within assisted dying. Assisted dying is currently of wide interest due to legislative change. At the time of research, the New Zealand Parliament was passing the End of Life Choice Act, yet there had been no research with people approaching the end of life about assisted dying. Through the media we recruited and interviewed 14 people approaching the end of life who would have considered choosing assisted dying if it were available to them. Interviews were analyzed using an immersion/crystallization thematic analysis. Assisted dying appealed to participants because it offered control. This article examines the discursive context of control as well as the participants' perception of control to offer insights into how paradoxically, a medical regime of assisted dying reinforces health professionals as in control of the circumstances of dying. We argue that although legalized medical assisted dying is highly regulated and monitored, thus limiting freedom, the option of assisted dying also increases freedom for the dying person. Within this paradox of control, there is still scope for choice and an ethical making of the self, although limited by the biopolitical regime, that equates to a degree of freedom for participants.

Evaluating an Adolescent's Decision-Making Capacity Whilst in the Harsh World of Detention.

Reports of children participating in hunger strikes while detained in offshore detention centres raise interrelated ethical issues and recognizable challenges for the medical decision-makers at these sites. A composite case study, informed by reports in the public domain, is employed to explore the unique challenges of consent and decision-making in these circumstances and the perennial issues inherent in adolescents' developing capacity and autonomy. We present an amalgamated case of a fourteen-year-old adolescent who refused to consent to medical reversal of her hunger strike protest. The medical team became the final arbiter when her parents, who were also in detention, could not agree with each other even after mediation. The case explores the complexity of evaluating the adolescent's capacity to provide informed consent while influenced by the opinions of co-detainees in this extreme setting. We argue that the parents and the child had compromised decisional capacity due to the effects of detention. The challenges to the medical team are recognized and discussed. The team members faced a difficult dilemma and considered the competing values of the multiple cultural and ethical factors. Each team member integrated his or her own roles, duties, and discipline-specific professional guidelines with the primary goal of mitigating potential harms.

Patients' views on end-of-life practices that hasten death: a qualitative study exploring ethical distinctions.

BACKGROUND: Assisted dying (AD) is currently of wide interest due to legislative change. Its relationship to other end-of-life practices such as palliative sedation (PS) is the subject of ongoing debate. The aim of this article is to describe the perspectives of a group of New Zealanders with life-limiting illness, who want or would consider AD, on the provision of end of life services, including assisted death, withdrawal of lifeprolonging treatment and symptom management with opioids or PS. METHODS: We recruited 14 people with life-limiting illness and life expectancy of less than a year. Their mean age was 61 (range, 34-82) years and half were enrolled in Hospice. An additional six family members were also interviewed and included in analysis. We asked them about why they would consider AD if it was available. Interview transcripts were inductively analyzed consistent with thematic analysis. We compared the findings to prevailing ethical frameworks. RESULTS: Most of the participants viewed current palliative care practices, such as pain relief with opioids and symptom management with PS, as hastening death, in contrast to some medical research which concludes that proportional therapeutic doses do not hasten death. Some participants did not agree with the 'doctrine of double effect' ('DDE') and saw such practices as 'slow euthanasia' and 'covert euthanasia'. They implied such practices were performed without patient consent, though they did not conceive of this as murder. Participants asserted that active and passive practices for ending life were morally equivalent, and preferred to choose the time of death over other legal means for death. CONCLUSIONS: This article contributes to what is known about how patients perceive end-of-life practices that potentially hasten death. There is a divide in what medical ethics and most health professionals and what some patients consider active hastening death. Participants' perspective was consistent with a consequentialist framework whereas deontology often guides medical ethics at the end of life. Participants' challenge to the interpretation of legal end-of-life practices as AD represents an epistemic contest to the foundation of medical knowledge, authority and ethics and therefore carries implications for preferences in care, communication and palliative care practice.

When Parents Refuse: Resolving Entrenched Disagreements Between Parents and Clinicians in Situations of Uncertainty and Complexity.

When shared decision making breaks down and parents and medical providers have developed entrenched and conflicting views, ethical frameworks are needed to find a way forward. This article reviews the evolution of thought about the best interest standard and then discusses the advantages of the harm principle (HP) and the zone of parental discretion (ZPD). Applying these frameworks to parental refusals in situations of complexity and uncertainty presents challenges that necessitate concrete substeps to analyze the big picture and identify key questions. I outline and defend a new decision-making tool that includes three parts: identifying the nature of the disagreement, checklists for key elements of the HP and ZPD, and a "think list" of specific questions designed to enhance use of the HP and ZPD in clinical decision making. These tools together will assist those embroiled in complex disagreements to disentangle the issues to find a path to resolution.

A young man with spinal muscular atrophy and impending respiratory arrest.

From a statutory standpoint, the decision-making capacity of adolescents differs significantly from that of adults because adolescents are considered to lack the experience and judgment necessary to make legally binding decisions. Furthermore, in the case of minors, the principle of protection of life tends to outweigh the principle of autonomy. Here we present the hypothetical case of a 16-year-old boy with spinalmuscular atrophy type II who was admitted to the intensive care unit for severe respiratory distress. We focus on the tension that developed among the patient, his parents, and his physicians when the need for emergency mechanical ventilation became apparent. We review the legal and ethical premises under which adolescents are permitted to make legally binding decisions, ie, the emancipated minor and the mature minor doctrines. Finally, we discuss the concepts of protectionism and liberationism as they apply to adolescents' decision-making capacity.