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.

Choreographing Death: A Social Phenomenology of Medical Aid-in-dying in the United States.

This article draws on ethnographic research on the implementation of Vermont's 2013 medical aid-in-dying (AID) law to explore a fundamental paradox: While public discourse characterizes AID as a mechanism for achieving an individually controlled autonomous death, the medico-legal framework that organizes it enlists social support and cultivates dependencies. Therefore, while patients pursuing AID may avoid certain types of dependency-such as those involved in bodily care-the process requires them to affirm and strengthen other bureaucratic, material, and affective forms. By tracing the social phenomenology of several AID deaths, I illustrate how AID results in distinctive forms of sociality and dependency that require terminally ill people and caregivers to embrace a collaborative stance toward choreographing death. I argue that assisted dying offers an opportunity to resist dominant U.S. cultural narratives that view dependency in purely negative terms and reimagine the relationships between disability, dependency, and care at the end of life.

Access to Aid-in-Dying in the United States: Shifting the Debate From Rights to Justice.

Much of the literature on aid-in-dying (AID) has drawn heavily on rights-based ethical and legal frameworks that emphasize patients' rights of self-determination in end-of-life decision-making. Less attention has focused on how terminally ill people actually experience such putative rights once they are legally authorized. This analytic essay draws on findings from the Vermont Study on Aid-in-Dying, an ethnographic study of the implementation of AID in Vermont (2015-2017). First, I show that terminally ill people can face a range of barriers to accessing AID in permissive jurisdictions, and that access to AID is mediated by various inequalities endemic to US health care, as well as some that are unique to AID. I then build on these findings to examine the utility of the concept of justice for public health scholarship on AID. By integrating empirical, ethical, and policy analysis, I reframe rights-based frameworks that emphasize the role of individual choice and decision-making at the end of life. In doing so, I draw attention to health care justice as a neglected issue in public health perspectives on AID.

Fear of Life, Fear of Death, and Fear of Causing Death: How Legislative Changes on Assisted Dying Are Doomed to Fail.

Fear of life, fear of death, and fear of causing death form a combination that prevents reasoned changes in laws concerning end-of-life situations. This is shown systematically in this article using the methods of conceptual analysis. Prevalent fears are explicated and interpreted to see how their meanings differ depending on the chosen normative stance. When the meanings have been clarified, the impact of the fears on the motivations and justifications of potential legislative reforms are assessed. Two main normative stances are evoked. The first makes an appeal to individual self-determination, or autonomy, and the second to the traditional professional ethics of physicians. These views partly share qualifying elements, including incurability and irreversibility of the patient's medical condition, proximity of death, the unbearable nature of suffering, and issues of voluntariness further shade the matter. The conclusion is that although many motives to change end-of-life laws are admirable, they are partly contradictory, as are calls for autonomy and appeals to professional ethics; to a degree that good, principled legislative solutions remain improbable in the foreseeable future.

A critical exploration of a collaborative Kaupapa Maori consistent research project on physician-assisted dying.

AIM: This paper critically explores the research approach undertaken by Maori and tauiwi researchers working alongside kaumatua within the context of physician-assisted dying. We critically explore the collaborative process we undertook in framing the research context and discuss the rewards and challenges that emerged. METHOD: The research this critical discussion draws on undertook a qualitative Kaupapa Maori consistent research approach and drew on the principles of an Interface Research approach. The paper focuses on the collaborative approach taken between the 10 researchers involved in the study. RESULTS: Challenges identified within the collaborative Kaupapa Maori consistent research process included: determining appropriate authority and representation of researchers and participants; maintaining clear communication; time and logistical management. The key strengths that emerged from this research design were: establishing a culturally safe and robust research process; an ability to build and maintain relationships between researchers and participants; and the opportunity to develop academic research skills between researchers and participants. CONCLUSION: Collaborative Kaupapa Maori consistent research approaches to research can enable accountability, control and representation throughout the entire research process. Given the rich research results achieved and personal rewards gained from this study design, we would advocate for the application of such approaches within health research contexts.

Assisted Suicide as a Remedy for Suffering? The End-of-Life Preferences of British "Suicide Tourists".

The highly charged debate about the moral status of assisted suicide features regularly in the news media in medically advanced countries. In the United Kingdom, the debate has been dominated in recent years by a new mode of death: assisted suicide in Switzerland, so-called suicide tourism. Drawing on in-depth interviews with people who were actively planning on 'going to Switzerland,' alongside participant-observation at a do-it-yourself self-deliverance workshop, I discuss how participants arrived at their decision to seek professionalized assistance. In doing so, I explore the constituent elements of people's suffering, examining how participants justified, rationalized, or sought authentication from a doctor for their decision to die in light of their own belief systems and aesthetic preferences for a good death.

Multi-Ethnic Attitudes Toward Physician-Assisted Death in California and Hawaii.

BACKGROUND: As aid-in-dying laws are gaining more public acceptance and support, it is important to understand diverse perceptions toward physician-assisted death (PAD). We compare attitudes of residents from California and Hawaii to identify variables that may predict attitudes toward PAD. METHODS: A cross-sectional online survey of 1095 participants (a 75.8% survey completion rate) from California and 819 from Hawaii (a 78.4% survey completion rate). Data were collected between July through October 2015. RESULTS: Majority of study participants in California (72.5%) and Hawaii (76.5%) were supportive of PAD. Only 36.8% of participants in Hawaii and 34.8% of participants in California reported completing advance directives. To better understand which subgroups were most in favor of PAD, data were analyzed using both recursive partitioning and stepwise logistic regression. Older participants were more supportive of PAD in both states. Also, all ethnic groups were equally supportive of PAD. Completion of advance directives was not a significant predictor of attitudes toward PAD. Persons who reported that faith/religion/spirituality was less important to them were more likely to support PAD in both states. Thus, the major influences on the attitudes to PAD were religious/spiritual views and age, not ethnicity and gender. Even in the subgroups least supportive of PAD, the majority supported PAD. CONCLUSIONS: This study shows that in the ethnically diverse states of California and Hawaii, faith/religion/spirituality and age are major influencers of attitudes toward PAD and not ethnicity and gender. Even in the subgroups least supportive of PAD, the majority supports PAD.

Physician-Assisted Suicide and Other Forms of Euthanasia in Islamic Spiritual Care.

The muteness in the Qur'an about suicide due to intolerable pain and a firm opposition to suicide in the hadith literature formed a strong opinion among Muslims that neither repentance nor the suffering of the person can remove the sin of suicide or mercy 'killing' (al-qatl al-rahim), even if these acts are committed with the purpose of relieving suffering and pain. Some interpretations of the Islamic sources even give advantage to murderers as opposed to people who commit suicide because the murderers, at least, may have opportunity to repent for their sin. However, people who commit suicide are 'labeled' for losing faith in the afterlife without a chance to repent for their act. This paper claims that Islamic spiritual care can help people make decisions that may impact patients, family members, health care givers and the whole community by responding to questions such as 'What is the Islamic view on death?', 'What is the Islamic response to physician-assisted suicide and other forms of euthanasia?', 'What are the religious and moral underpinnings of these responses in Islam?'

Rich, white, and vulnerable: rethinking oppressive socialization in the euthanasia debate.

Anita Silvers (1998) has criticized those who argue that members of marginalized groups are vulnerable to a special threat posed by physician-assisted suicide (PAS) and voluntary active euthanasia (VAE). She argues that paternalistic measures prohibiting PAS/VAE in order to protect these groups only serve to marginalize them further by characterizing them as belonging to a definitively weak class. I offer a new conception of vulnerability, one that demonstrates how rich, educated, white males, who are typically regarded as having their autonomy enhanced by their social status, are just as, if not more, vulnerable to threats posed by PAS/VAE as a result of the harmful social messages at work just below the surface of contemporary Western culture. I use this new conception of vulnerability to reinforce arguments for continued statutory prohibitions on PAS/VAE.

Families' experiences with patients who died after assisted suicide: a retrospective interview study in southern Switzerland.

BACKGROUND: In Switzerland, if certain conditions are met, assisted suicide is not prosecuted. International debate suggests that requests for hasten death are often altered by the provision of palliative care. Aims of the study were to explore patients' reasons for choice of assisted suicide and family perceptions of the interactions with health care professionals. PATIENTS AND METHODS: This is a qualitative study upon 11 relatives of 8 patients cared for by a palliative care team, deceased of assisted suicide. RESULTS: Pain and symptom burden were not regarded by patients as key reasons to seek assisted suicide: existential distress and fear of loss of control were the determinants. Most patients had made pre-illness decisions to use assisted suicide. A general need for perceived control and fear of dependency were reported as a common characteristic of these patients. Patients held misunderstandings about the nature and purpose of palliative care, and the interviewed indicated that patients did not regard provision of palliative care services as influential in preventing their decision. CONCLUSIONS: Assisted suicide was preferred despite provision of palliative care. Better understanding of the importance placed on perceived control and anticipated dependency is needed. Further research is needed to develop appropriate support for patients contemplating assisted suicide.

Physician-assisted suicide attitudes of older Mexican-American and non-Hispanic white adults: does ethnicity make a difference?

Little is known about attitudes toward physician-assisted suicide (PAS) in various ethnic groups. This study compares attitudes held by older Mexican Americans and non-Hispanic whites and examines subject characteristics that may influence their responses. A convenience sample of 100 older Mexican Americans and 108 non-Hispanic whites (n=208) aged 60 to 89 were recruited from four primary care community-based practice sites in San Antonio, Texas. Interview items measured attitudes toward PAS, cognitive status, functional status, and religiosity. Older Mexican Americans (52.7%) reported stronger agreement than non-Hispanic whites (33.7%) with PAS. Male sex (odds ratio (OR)=2.62, 95% confidence interval (CI)=1.09-6.35) predicted agreement with legalization in Mexican Americans, whereas lower religiosity scores (OR=0.84, 95% CI=0.75-0.94) were predictive of agreement in older non-Hispanic whites. This study is the first to find positive attitudes among community-dwelling older Mexican Americans toward PAS that are higher than those of older non-Hispanic white adults. Sex and religious views were important determinants of positive attitudes toward PAS. Larger, more-generalizable studies should be conducted to confirm the attitudinal patterns that have been identified in this study.

Legal issues in end-of-life care: perspectives from Saudi Arabia and United States.

AIM: This paper provides different perspectives on end-of-life legal issues in Saudi Arabia, and contrasts those perspectives with current legal practice in the United States. BACKGROUND: Islamic law governs end-of-life legal issues in Saudi Arabia which applies to end-of-life legal issues. There is a specific legal terminology, derived from the Qura'an, that is used to settle conflicts in end-of-life care. This contrasts with the United States which has a secular system of law that informs end-of-life issues. DATA SOURCES: extent literature review of Muslim medical ethics; review of Shari'a law and review of US law and legal cases was used to provide both perspectives regarding end-of-life issues. DISCUSSION: Commonalities and differences regarding end-of-life issues were highlighted in depth. CONCLUSIONS: There are many differences, and some commonalities between the laws practiced in both countries which help explain medical and nursing practice at the end of life.

Increasing diversity of Americans' faiths alongside Baby Boomers' aging: implications for chaplain intervention in health settings.

Chaplains serving in the health care context provide a ministry to dying patients of inestimable worth as they comfort patients in the last chapter of the journey by being present, listening, and caring. Chaplains also play another important role, helping patients clarify ways in which their beliefs and values might influence health care decisions. This paper reviewed the current trends of spiritual diversity alongside the aging of a large Baby Boomer cohort. Chaplains may be challenged as they participate in the decision-making process, or as they support familes who make decisions about the care of loved ones nearing the end of life. Many of those who seek health care and comfort as the end of life approaches will bring a startling diversity of nonbelief, beliefs, and diverse religious and spiritual practices. This pattern of diversity will profoundly affect patients' decision-making around end-of-life issues. Case studies are used to illustrate possibilities for the chaplain's role at the bedside in the face of such diversity. The dimensional information of a new scale is presented for chaplains to assess diverse afterlife beliefs. As chaplains renew their studies of the worlds living religions, they will be better equipped to serve the needs of this large and spiritually diverse population.

Suicide assisted by two Swiss right-to-die organisations.

BACKGROUND: In Switzerland, non-medical right-to-die organisations such as Exit Deutsche Schweiz and Dignitas offer suicide assistance to members suffering from incurable diseases. OBJECTIVES: First, to determine whether differences exist between the members who received assistance in suicide from Exit Deutsche Schweiz and Dignitas. Second, to investigate whether the practices of Exit Deutsche Schweiz have changed since the 1990s. METHODS: This study analysed all cases of assisted suicide facilitated by Exit Deutsche Schweiz (E) and Dignitas (D) between 2001 and 2004 and investigated by the University of Zurich's Institute of Legal Medicine (E: n = 147; D: n = 274, total: 421). Furthermore, data from the Exit Deutsche Schweiz study which investigated all cases of assisted suicide during the period 1990-2000 (n = 149) were compared with the data of the present study. RESULTS: More women than men were assisted in both organisations (D: 64%; E: 65%). Dignitas provided more assistance to non-residents (D: 91%; E: 3%; p = 0.000), younger persons (mean age in years (SD): D: 64.5 (14.1); E: 76.6 (13.3); p = 0.001), and people suffering from fatal diseases such as multiple sclerosis and amyotrophic lateral sclerosis (D: 79%; E: 67%; p = 0.013). Lethal medications were more often taken orally in cases assisted by Dignitas (D: 91%; E: 76%; p = 0.000). The number of women and the proportion of older people suffering from non-fatal diseases among suicides assisted by Exit Deutsche Schweiz has increased since the 1990s (women: 52% to 65%, p = 0.031; mean age in years (SD): 69.3 (17.0) to 76.9 (13.3), p = 0.000), non-fatal diseases: 22% to 34%, p = 0.026). CONCLUSIONS: Weariness of life rather than a fatal or hopeless medical condition may be a more common reason for older members of Exit Deutsche Schweiz to commit suicide. The strong over-representation of women in both Exit Deutsche Schweiz and Dignitas suicides is an important phenomenon so far largely overlooked and in need of further study.

To die, to sleep: US physicians' religious and other objections to physician-assisted suicide, terminal sedation, and withdrawal of life support.

This study analyzes data from a national survey to estimate the proportion of physicians who currently object to physician-assisted suicide (PAS), terminal sedation (TS), and withdrawal of artificial life support (WLS), and to examine associations between such objections and physician ethnicity, religious characteristics, and experience caring for dying patients. Overall, 69% of the US physicians object to PAS, 18% to TS, and 5% to WLS. Highly religious physicians are more likely than those with low religiosity to object to both PAS (84% vs 55%, P < .001) and TS (25% vs 12%, P < .001). Objection to PAS or TS is also associated with being of Asian ethnicity, of Hindu religious affiliation, and having more experience caring for dying patients. These findings suggest that, with respect to morally contested interventions at the end of life, the medical care patients receive will vary based on their physicians' religious characteristics, ethnicity, and experience caring for dying patients.

Is physician-assisted death only for developed countries? Latin America as a case study.

The achievements of modern medicine are manifold and impressive. However, there is a broad recognition of the fact that continuing medical treatment is not always beneficial to the patient, nor is it always what the patient wants. This has led to a debate about the way physicians may or may not be involved in the end of life of patients. Could there be a justification for the active ending of a patient's life? This debate has a global character. In this article we will explore this debate for developing countries; we will focus on physician-assisted death (PAD) in Latin American countries. At stake is the moral relevance of differences, not the moral justification of PAD per se. We argue that arguments for PAD apply equally in affluent and in developing countries. Some of the counterarguments, however, would seem to hold more in developing countries than in affluent countries. Yet, under certain conditions, a policy tolerating PAD would be as acceptable in developing countries as in developed countries.