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.

Guiding the Future: Rethinking the Role of Advance Directives in the Care of People with Dementia.

When people lose capacity to make a medical decision, the standard is to assess what their preferences would have been and try to honor their wishes. Dementia raises a special case in such situations, given its long, progressive trajectory during which others must make substituted judgments. The question of how to help surrogates make better-informed decisions has led to the development of dementia-specific advance directives, in which people are given tools to help them communicate what their preferences are while they are still able. Such directives allow the perspective of the person to play a clearer role in guiding decisions about their care. Dementia directives can never serve as rigid algorithms. Rather, they can be used to help inform conversations, to help surrogates make decisions that are better aligned with the preferences the person would have had. This essay lays out the proposed utility of dementia-specific directives and addresses some of the criticisms raised about them.

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.

No consent for brain death testing.

The overwhelming weight of legal authority in the USA and Canada holds that consent is not required for brain death testing. The situation in England and Wales is similar but different. While clinicians in England and Wales may have a prima facie duty to obtain consent, lack of consent has not barred testing. In three recent cases where consent for brain death testing was formally presented to the court, lack of consent was not determinative, and in one case the court questioned whether the clinicians were even required to seek consent from the parents of a child at all.

Pediatric Decision Making: Consensus Recommendations.

Despite apparent disagreement in the scholarly literature on standards of pediatric decision making, a recognition that similar norms underpin many of the dominant frameworks motivated a June 2022 symposium "Best Interests and Beyond: Standards of Decision Making in Pediatrics" in St Louis, MO. Over the course of this 3-day symposium, 17 expert scholars (see author list) deliberated on the question "In the context of US pediatric care, what moral precepts ought to guide parents and clinicians in medical decision making for children?" The symposium and subsequent discussion generated 6 consensus recommendations for pediatric decision making, constructed with the primary goals of accessibility, teachability, and feasibility for practicing clinicians, parents, and legal guardians. In this article, we summarize these recommendations, including their justification, limitations, and remaining concerns.

Hospice Nurse Ethics and Institutional Policies Toward Medical Aid in Dying.

ABSTRACT: A significant number of hospices in U.S. jurisdictions where medical aid in dying is legal have implemented policies that require nurses to leave the room when a patient ingests aid-in-dying medication. Two questions with ethical implications arise from these policies: (1) Is it ethically supportable for a hospice to require that staff leave the room while a patient ingests aid-in-dying medication? and (2) Does this requirement compromise the nurse's professional commitment to the patient and family?This article reviews the origins of this common policy, as well as nursing codes of ethics and professional organization policy statements as they relate to nursing commitments to patients. It finds that an institutional policy requiring nurses to leave the room while a patient ingests aid-in-dying medication risks violating professional nursing standards, reinforces stigma regarding medical aid in dying, and potentially abandons patients and loved ones at a critical time in their passage toward a desired and legal death. The authors describe a case that depicts these three potential risks, concluding that even if such policies are not legally prohibited by state aid-in-dying statutes, hospices should eliminate them or at least be transparent about the practice and its rationale before accepting patients who request medical aid in dying.

Addressing Conflicts of Interest in Health and Medicine: Current Evidence and Implications for Patient Decision Aid Development.

BACKGROUND: More stringent policies for addressing conflicts of interest have been implemented around the world in recent years. Considering the value of revisiting conflict of interest quality standards set by the International Patient Decision Aid Standards (IPDAS) Collaboration, we sought to review evidence relevant to 2 questions: 1) What are the effects of different strategies for managing conflicts of interest? and 2) What are patients' perspectives on conflicts of interest? METHODS: We conducted a narrative review of English-language articles and abstracts from 2010 to 2019 that reported relevant quantitative or qualitative research. RESULTS: Of 1743 articles and 118 abstracts identified, 41 articles and 2 abstracts were included. Most evidence on the effects of conflict of interest management strategies pertained only to subsequent compliance with the management strategy. This evidence highlighted substantial noncompliance with prevailing requirements. Evidence on patient perspectives on conflicts of interest offered several insights, including the existence of diverse views on the acceptability of conflicts of interest, the salience of conflict of interest type and monetary value to patients, and the possibility that conflict of interest disclosure could have unintended effects. We identified no published research on the effects of IPDAS Collaboration conflict of interest quality standards on patient decision making or outcomes. LIMITATIONS: Because we did not conduct a systematic review, we may have missed some evidence relevant to our review questions. In addition, our team did not include patient partners. CONCLUSIONS: The findings of this review have implications for the management of conflicts of interest not only in patient decision aid development but also in clinical practice guideline development, health and medical research reporting, and health care delivery.

Determination of Brain Death/Death by Neurologic Criteria: The World Brain Death Project.

IMPORTANCE: There are inconsistencies in concept, criteria, practice, and documentation of brain death/death by neurologic criteria (BD/DNC) both internationally and within countries. OBJECTIVE: To formulate a consensus statement of recommendations on determination of BD/DNC based on review of the literature and expert opinion of a large multidisciplinary, international panel. PROCESS: Relevant international professional societies were recruited to develop recommendations regarding determination of BD/DNC. Literature searches of the Cochrane, Embase, and MEDLINE databases included January 1, 1992, through April 2020 identified pertinent articles for review. Because of the lack of high-quality data from randomized clinical trials or large observational studies, recommendations were formulated based on consensus of contributors and medical societies that represented relevant disciplines, including critical care, neurology, and neurosurgery. EVIDENCE SYNTHESIS: Based on review of the literature and consensus from a large multidisciplinary, international panel, minimum clinical criteria needed to determine BD/DNC in various circumstances were developed. RECOMMENDATIONS: Prior to evaluating a patient for BD/DNC, the patient should have an established neurologic diagnosis that can lead to the complete and irreversible loss of all brain function, and conditions that may confound the clinical examination and diseases that may mimic BD/DNC should be excluded. Determination of BD/DNC can be done with a clinical examination that demonstrates coma, brainstem areflexia, and apnea. This is seen when (1) there is no evidence of arousal or awareness to maximal external stimulation, including noxious visual, auditory, and tactile stimulation; (2) pupils are fixed in a midsize or dilated position and are nonreactive to light; (3) corneal, oculocephalic, and oculovestibular reflexes are absent; (4) there is no facial movement to noxious stimulation; (5) the gag reflex is absent to bilateral posterior pharyngeal stimulation; (6) the cough reflex is absent to deep tracheal suctioning; (7) there is no brain-mediated motor response to noxious stimulation of the limbs; and (8) spontaneous respirations are not observed when apnea test targets reach pH <7.30 and Paco2 ≥60 mm Hg. If the clinical examination cannot be completed, ancillary testing may be considered with blood flow studies or electrophysiologic testing. Special consideration is needed for children, for persons receiving extracorporeal membrane oxygenation, and for those receiving therapeutic hypothermia, as well as for factors such as religious, societal, and cultural perspectives; legal requirements; and resource availability. CONCLUSIONS AND RELEVANCE: This report provides recommendations for the minimum clinical standards for determination of brain death/death by neurologic criteria in adults and children with clear guidance for various clinical circumstances. The recommendations have widespread international society endorsement and can serve to guide professional societies and countries in the revision or development of protocols and procedures for determination of brain death/death by neurologic criteria, leading to greater consistency within and between countries.

Five Things Clinicians Should Know When Caring for Unrepresented Patients.

Increasingly, clinicians confront patients who are incapacitated and have no available surrogate. Such unrepresented patients cannot consent to proposed health care, and nobody else is available who is authorized to consent on their behalf. Despite the challenge of decision making for unrepresented patients, few laws or professional organization policy statements offer a solution. This article helps fill this void by describing the top 5 things clinicians should know when they are caring for unrepresented patients: (1) realize that these patients are highly vulnerable; (2) confirm that the patient is incapacitated; (3) confirm that the patient is unrepresented; (4) appreciate variability among state law decision-making processes for unrepresented patients; (5) use guardianship only as a last resort.