Legal and Ethics Considerations in Capacity Evaluation for Medical Aid in Dying.

Evaluating decisional capacity for patients seeking medical aid in dying (MAID) raises challenging legal, logistical, and ethics questions. The existing literature on the subject has been shaped largely by early disagreements over whether effective capacity assessment for such patients is ever possible, which in turn stemmed from debates over the ethics of MAID itself. In attempting to establish meaningful criteria for assessments, many jurisdictions have sought either to apply or to adapt models of capacity evaluation designed for other forms of medical decision-making, such as the widely used "four skills" model, failing to account for the fundamental differences in kind between these other decisions and MAID. This article seeks to reexamine these questions with a focus on two logistical matters (the appropriate credentialing for the evaluator and the potential liability of the evaluator) and three clinical matters (level of understanding, clinical scrutiny and certainty, and impairment) in an effort to raise legal and ethics concerns that remain unresolved, even as MAID is permitted in an increasing number of jurisdictions.

Conscience-Based Barriers to Medical Aid in Dying: A Survey of Colorado Physicians.

BACKGROUND: Approximately 20% of the United States' population lives in a state or jurisdiction where medical aid in dying (MAiD) is legal. It is unknown how physicians' own barriers are associated with their provision of the spectrum of MAiD services. OBJECTIVE: To measure physicians' religious and/or ethical barriers to providing MAiD services and how such barriers relate to physicians' intentions and behaviors. DESIGN: Three-wave cross-sectional survey fielded in Colorado in 2020-2021. PARTICIPANTS: Physicians providing care to patients likely clinically eligible for MAiD according to probabilistic sampling. MAIN MEASURES: Physicians self-reported barriers to their own participation in MAiD. We considered large ethical and/or religious barriers to be conscience-based barriers. We measured physicians' self-reported intention to participate and self-reported prior participation in MAiD since it was legalized in Colorado in 2017. We estimated differences in intention and behavior outcomes according to presence of conscience-based barriers, adjusting for physician gender, race/ethnicity, time in practice, and specialty. KEY RESULTS: Among 300 respondents, 26% reported "large" ethical and/or religious barriers to their involvement in MAiD. Physicians with longer time in practice and those identifying as non-White were more likely to report conscience-based barriers to MAiD. Comparing physicians with and without conscience-based barriers to MAiD, we found no difference in ancillary participation (discussing, referring) but significant differences in direct participation (serving as consultant [5% vs. 31%] or attending [0% vs. 22%]). CONCLUSIONS: Approximately one-quarter of physicians likely to care for MAiD-eligible patients in Colorado reported religious and/or ethical barriers to MAiD. Despite religious and/or ethical barriers, the vast majority of physicians were willing to discuss MAiD and/or refer patients seeking MAiD services. These data provide important empirical foundation for policy from hospitals and health systems as well as medical specialty groups with official positions on MAiD.

A Moratorium on the Euphemism MAID.

It is essential for high-quality health care for providers to adhere to the principle of truth telling, speaking with clarity and honesty. The euphemism medical aid in dying, MAID, is being mainstreamed in the medical literature by proponents of physician-assisted suicide and euthanasia. This trend is deleterious because MAID's proponents do not consistently express the meaning and intent of the practice, and the phrase downplays the fact that a provider is participating in the act of death for a patient. The euphemism blurs the differences between providing high-quality palliative care and participating in the death of a patient prior to a natural death. Some believe the term MAID is used exclusively for assisted suicide in patients with a terminal diagnosis with less than 6 months to live, when in fact it is being used for both assisted suicide and euthanasia and for patients who have no terminal diagnosis with potentially years to live. We are calling up on our colleagues to cease the use of this and other euphemisms in this ethically controversial practice. We recommend standardized language that accurately denotes the context and process. Provider Assisted Death by Prescription (PAD-P) and Provider Assisted Death by Administration (PAD-A) are terms that most accurately describe the process, taking into account who is prescribing or administering a lethal substance and the outcome of the actions. Literature that addresses this practice should be described as ending life literature. The standardized language needs to be used on death certificates so we can most accurately assess the impact that provider-assisted death is having on society. Emphasizing truth telling in morally controversial practices will foster trust among health care providers and with patients.

Residency Requirements for Medical Aid in Dying.

In 1997, when Oregon became the first U.S. jurisdiction authorizing medical aid in dying (MAID), its law included a requirement that patients be legal residents of the state. Other U.S. jurisdictions legalizing MAID followed Oregon in adopting residency requirements. Recent litigation challenges the legality, as well as the justification, for such requirements. Facing such challenges, Oregon and Vermont eliminated their MAID residency requirements. More states could follow this move, for, in certain circumstances, the U.S. Constitution's privileges and immunities clause protects citizens' right to travel to secure medical care. Policy considerations could also motivate states to reexamine whether such requirements are justified in light of existing evidence of how MAID laws have been applied.

Medical aid in dying to avoid late-stage dementia.

Many patients with dementia want the option of using medical aid in dying (MAID) to end their lives before losing decision-making capacity and other abilities that impact their desired quality of life. But, for over two decades, it has been widely understood that these patients cannot (solely because of their dementia diagnosis) satisfy three statutory eligibility requirements in all U.S. MAID laws: (1) decisional capacity, (2) the ability to self-administer the life-ending medications, and (3) a terminal condition with 6 months or less to live. Now, because of recent statutory amendments together with the use of voluntarily stopping eating and drinking (VSED) to quickly advance to a terminal condition, this dementia exclusion from MAID might no longer apply. If combining VSED and MAID is now a possibility for patients with dementia, then clinicians need more guidance on whether and when to support patients seeking to take this path. In this article, we begin to provide this guidance. First, we describe the recent case of an Oregon patient with early-stage Alzheimer's dementia who successfully used VSED to qualify for and use MAID. Second, we discuss prior barriers to using VSED as a bridge to MAID for people with dementia. Third, we describe recent legal changes that might make this path now possible.

Opening the Door: Rethinking "Difficult Conversations" about Living and Dying with Dementia.

This essay looks closely at metaphors and other figures of speech that often feature in how Americans talk about dementia, becoming part of cultural narratives: shared stories that convey ideas and values, and also worries and fears. It uses approaches from literary studies to analyze how cultural narratives about dementia may surface in conversations with family members or health care professionals. This essay also draws on research on a notable social effect of legalizing medical aid in dying: patients may find it easier to bring up a range of concerns, regardless of whether they have any interest in hastening their own death. The essay proposes that health care professionals rethink an idea prominent within their own culture: that conversations about the end of a person's life are inherently difficult. This framing may make it hard for people facing dementia to bring up their concerns about what lies ahead. We suggest a different way to think about these conversations, using the metaphor of "opening the door" to represent inviting a patient to bring up issues of deepest concern.

When People Facing Dementia Choose to Hasten Death: The Landscape of Current Ethical, Legal, Medical, and Social Considerations in the United States.

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 weighing resonates with an ethical and legal consensus in the United States 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. For these reasons, whether and how a terminally ill individual can choose to control the timing of their death is a topic that cannot be avoided when considering the dementia trajectory. With a focus on the U.S. context, this landscape review considers the status of provisions that would legally permit people facing dementia to hasten death with appropriate support from medical professionals. This review can be used to plan and guide clinical and legal practitioner discussion and policy development concerning evolving questions not fully covered by existing medical decision-making provisions.

A Focus Group Study of the Views of Persons with a History of Psychiatric Illness about Psychiatric Medical Aid in Dying.

BACKGROUND: Medical aid in dying (MAID) is legal in a number of countries, including some states in the U.S. While MAID is only permitted for terminal illnesses in the U.S., some other countries allow it for persons with psychiatric illness. Psychiatric MAID, however, raises unique ethical concerns, especially related to its effects on mental illness stigma and on how persons with psychiatric illnesses would come to feel about treatment and suicide. To explore those concerns, we conducted several focus groups with persons with lived experience of mental illness. METHODS: We conducted three video-conference-based focus groups involving adults residing in the U.S. who reported a prior diagnosis of any psychiatric illness. Only participants who reported thinking that MAID for terminal illness was morally acceptable were included. Focus group participants were asked to respond to a series of four questions. Groups were facilitated by a coordinator who was independent of the research team. RESULTS: A total of 22 persons participated in the focus groups. The majority of participants had depression and anxiety disorders; no participants had psychotic disorders such as schizophrenia. Many participants strongly favored permitting psychiatric MAID, generally on the basis of respect for autonomy, its effects on stigma, and the severe suffering caused by mental illness. Others expressed concerns, typically related to difficulties in ensuring decision-making capacity and to the risk that MAID would be used in lieu of suicide. CONCLUSIONS: Persons with a history of psychiatric illness, as a group, have a diverse array of views about the permissibility of psychiatric MAID, reflecting nuanced consideration of how it relates to the public perception of mental illness, stigma, autonomy, and suicide risk.

Ethics and Medical Aid in Dying: Physicians' Perspectives on Disclosure, Presence, and Eligibility.

Medical aid in dying (MAiD), despite being legal in many jurisdictions, remains controversial ethically. Existing surveys of physicians' perceptions of MAiD tend to focus on the legal or moral permissibility of MAiD in general. Using a novel sampling strategy, we surveyed physicians likely to have engaged in MAiD-related activities in Colorado to assess their attitudes toward contemporary ethical issues in MAiD.

When the cause of death does not exist: time for the WHO to close the ICD classification gap for Medical Aid in Dying.

Medical aid in dying (MAID) is a highly controversial ethical issue in the global medical community. Unfortunately, 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. Hence, we encourage the WHO to create specific ICD codes for MAID. According to internationally established practices, a revised classification would require separate MAID-codes for (1) assisted suicide and (2) voluntary active euthanasia including supplemental codings of diseases, clusters of symptoms and function-oriented categories. By addressing these concerns, the WHO could close the "MAID gap" with new codes providing urgently necessary insights to society, public health decision-makers and regulators on this comparatively new social and medical ethical phenomenon. Search strategy and selection criteria: Data for this Viewpoint were identified by searches of MEDLINE, PubMed, and references from relevant articles using the search terms "Medical Aid in Dying", "Assisted Dying", "Assisted suicide", "Voluntary active euthanasia", "End of life decisions" and "Cause of death statistics". Only articles and sources published in English between 1997 and 2023 were included."

Hard Choices: How Does Injustice Affect the Ethics of Medical Aid in Dying?

Critics of medical aid in dying (MAID) often argue that it is impermissible because background social conditions are insufficiently good for some persons who would utilize it. I provide a critical evaluation of this view. I suggest that receiving MAID is a sort of "hard choice," in that death is prima facie bad for the individual and only promotes that person's interests in special circumstances. Those raising this objection to MAID are, I argue, concerned primarily about the effects of injustice on hard choices. I show, however, that MAID and other hard choices are not always invalidated by injustice and that what matters is whether the injustice can be remediated given certain constraints. Injustice invalidates a hard choice when it can, reasonably, be remedied in a way that makes a person's life go better. I consider the implications of this view for law and policy regarding MAID.

Long-term experience on assisted suicide in Switzerland: dementia, mental disorders, age-related polymorbidity and the slippery slope argument.

OBJECTIVES: According to the Swiss medico-ethical guidelines valid between 2004 and 2018, the key criterion for assisted suicide (AS) was that the patients who wished to die suffered with a disease leading to death in the foreseeable future. Critics of AS fears that broadening of the medical indications will lead to an uncontrolled expansion to persons who are not terminally ill (slippery slope argument). We evaluated to what extent this broadening took place in practice over time. STUDY DESIGN: Retrospective national cohort study. METHODS: By using data of the Swiss Federal Statistical Office, we analyzed the long-term development of AS in Switzerland over a 20-year period (1999-2018; n = 8738 cases). We classified the cases into one of three categories regarding the aforementioned key criterion for AS. RESULTS: In 43.6% of AS cases, the criterion 'end of life is near' was met. In 5.3% of cases, this criterion was not met (4.7%: mental disorders; 0.6%: dementia). In 51.1% of cases, the reason underlying AS comprised several, mostly age-related diseases and/or functional impairments; the aforementioned key criterion, however, was probably not met in most of the cases. Over time, the number of cases doubled over each 5-year period; this increase occurred similarly for the three categories. CONCLUSION: The fact that many AS cases took place outside the valid medico-ethical guidelines might be interpreted as a development in the idea of the slippery slope argument. The fact that the percentage distribution of these cases remained unchanged over time argues against it.

ICD-Based Cause of Death Statistics Fail to Provide Reliable Data for Medical Aid in Dying.

Objectives: To evaluate the most recent developments of medical aid in dying (MAID) in Switzerland and to test the reliability of reporting this phenomenon in cause of death statistics. Methods: By reviewing the MAID cases between 2018 and 2020, we compared the diseases and conditions underlying MAID reported by the ICD-based statistics provided by the Swiss Federal Statistical Office (FSO, n = 3,623) and those provided by the largest right-to-die organization EXIT (n = 2,680). Results: EXIT reported the motivations underlying the desire for death in a mixture of disease-specific and symptom-oriented categories; the latter including, for example, multimorbidity (26% of cases), and chronic pain (8%). Symptom-oriented categories were not included in the ICD-based FSO statistics. This led to the fact that the distribution of the diseases/conditions underlying MAID differed in 30%-40% of cases between both statistics. Conclusion: In order to reliably follow developments and trends in MAID, the diseases/conditions underlying the wish to die must be accurately recorded. Current methods of data collection using the ICD classification do not capture this information thoroughly ("MAID gap"). Newly created ICD codes for MAID must include both disease-specific and symptom-oriented categories.

Challenges in Completing a Death Certificate after Voluntary Stopping of Eating and Drinking (VSED).

In recent years, health care providers and the general public in the United States have gained a greater awareness of Voluntary Stopping of Eating and Drinking (VSED) as a last resort option to escape from unbearable suffering, thanks to a growing number of publications, books, and documentaries. However, the challenges and issues that can arise in completing a death certificate after VSED are not well described in literature. In this article, we first present an example case of VSED in which the death certificate was issued listing suicide as the manner of death by the medical examiner. Then, we describe the challenges and issues related to death certificates in VSED cases. Because there is no consensus on whether VSED is natural death or suicide, the death certificate may need to be referred to a medical examiner in many jurisdictions, potentially resulting in suicide being designated as the manner of death. Such designations can cause reticence in providers and institutions that might otherwise support patients who choose VSED but are concerned about the legal or reputational implications of enabling a "suicide" at their facility. A suicide designation may also contribute to moral distress in health care staff and impose emotional and practical burdens on the patient's surviving loved ones. We suggest that there are 3 approaches to addressing challenges and issues associated with death certificates after VSED: (1) navigate the existing system with guidance developed by professional organizations, (2) make a legal exemption, and (3) change the death certification system. Debate involving a wide variety of experts is warranted.

Medical Aid in Dying: How Might U.S. Policy Prevent Suffering at the End of Life?

Medical aid in dying refers to policies that allow terminally ill patients to seek assistance from their medical providers to obtain medications to hasten death. In this paper, we used a 7-point policy analysis model to examine the diversity of medical aid in dying policies that exist in jurisdictions (states and territories) in the U.S. and the implications of these policies for suffering at end of life. As of this writing, these practices are available in 12 jurisdictions, including 11 states and the District of Columbia. Legalization has occurred via statutory approaches in 10 jurisdictions and permissive approaches in two jurisdictions. We discuss the structures of these laws, the requirements for participation, and the limitations created by having jurisdiction-specific policies on such broad, bioethical issues. Existing laws appear to relieve suffering in patients at end of life. Jurisdictional differences create barriers to comprehensive expansion but provide insights into practice in different contexts.

Inaccessibility of care and inequitable conceptions of suffering: a collective response to the construction of "terminal" anorexia nervosa.

Informed by our lived experiences with eating disorders, our work providing direct support to communities underserved by existing healthcare structures, and our commitment to social justice, we are deeply troubled by several aspects of the proposed characteristics for "terminal" anorexia nervosa outlined by Gaudiani et al. in Journal of Eating Disorders (10:23, 2022). We have identified two substantial areas of concern in the proposed characteristics provided by Gaudiani et al. and the subsequent publication by Yager et al. (10:123, 2022). First, the original article and the subsequent publication fail to adequately address the widespread inaccessibility of eating disorder treatment, the lack of parameters for what constitutes "high quality care", and the prevalence of trauma experienced in treatment settings for those who do access treatment. Second, the characteristics proposed for "terminal" anorexia nervosa are constructed largely based on subjective and inconsistent valuations of suffering which build on and contribute to harmful and inaccurate eating disorder stereotypes. Overall, we believe these proposed characteristics in their current form stand to detract from, rather than assist, the ability of patients and providers to make informed, compassionate, and patient-centered decisions about safety and autonomy both for individuals with enduring eating disorders and for individuals with more recently diagnosed eating disorders.

Specialty Differences in Medical Aid in Dying Experiences: Results of a Survey of Physicians in Colorado.

In Colorado, medical aid in dying (MAiD) is legal, allowing a terminally ill person to request a prescription and self-administer a medication to end their life. Such requests are granted under certain circumstances, including a malignant neoplasm diagnosis, with a goal of peaceful death. This study examined differences in attitudes and actual participation in MAiD between oncologists and non-oncologists, using data from a recent survey of physicians regarding MAiD.

An examination and proposed theoretical model of risk and protective factors for bereavement outcomes for family members of individuals who engaged in medical aid in dying: A systematic review.

BACKGROUND: Medical Aid in Dying is an end-of-life option that allows a physician to provide a patient with a prescription to end their life. Though Medical Aid in Dying intends to reduce suffering for a patient, opponents argue Medical Aid in Dying may increase suffering for the family members during bereavement. To better understand the bereavement outcomes for family members/friends following Medical Aid in Dying, an exhaustive review of the risk and protective factors for bereavement outcomes is warranted. AIM: This systemic review aimed to identify studies that examined bereavement outcomes of family members of individuals who engage in Medial Aid in Dying, identify risk and protective factors for bereavement outcomes, and propose a theoretical model to enhance conceptual clarity. DESIGN: A mixed-method systematic review. DATA SOURCES: Ten databases were searched on June 16, 2021 and later conducted two updates (latest April 25, 2022). RESULTS: Thirteen articles met inclusion criteria. Risk and protective factors were identified pre-Medical Aid in Dying and risk factors post-Medical Aid in Dying. Few studies compared bereavement outcomes for family members of individuals utilizing Medical Aid in Dying to family members who lost someone to natural loss. CONCLUSIONS: This study provides equivocal results about the effects of Medical Aid in Dying on family members following the loss. The theoretical model outlines potential risk and protective factors. This model provides a greater understanding of possible universal risk and protective factors for family members of individuals who engaged in Medical Aid in Dying.

Should Palliative Care Teams be Involved in Medical Assisted Dying?

Palliative care teams offer holistic care for patients experiencing serious illness and related suffering, nevertheless, there are times when clinicians are asked by patients for help to obtain assisted dying. Patients in a growing number of areas may be eligible to request medically administered or self-administered lethal medications to control the timing of death and palliative care practices, established to neither hasten nor postpone death, may be challenged when caring for patients asking for assisted dying. In this "Controversies in Palliative Care" article, we invite three experts to provide a synopsis of the key studies that inform their thought processes, share practical advice on their clinical approach, and highlight the opportunities for future research. These experts suggest palliative care teams should be and are involved in medical assisted dying, but how palliative care teams are involved may depend on type of assisted dying requested, team members' scope of practice, legal regulations, and institutional guidelines. Research is needed on many aspects of assisted dying and palliative care including improving evidence-based clinical guidelines, addressing the needs of families, and coping strategies for all involved. An international study comparing assisted dying practices within, and outside palliative care may inform policy helping to clarify whether the integration of palliative care in assisted dying improves end-of-life care. In addition to research, it is recommended that researchers and clinicians collaborate on the development of a clinical textbook on assisted dying and palliative care to support all palliative care team members, offering guidelines and recommendations for practice.