Limits on Parental Discretion in Medical Decision-Making: pediatric intervention principles converge.

Pediatric intervention principles help clinicians and health-care institutions determine appropriate responses when parents' medical decisions place children at risk. Several intervention principles have been proposed and defended in the pediatric ethics literature. These principles may appear to provide conflicting guidance, but much of that conflict is superficial. First, seemingly different pediatric intervention principles sometimes converge on the same guidance. Second, these principles often aim to solve different problems in pediatrics or to operate in different background conditions. The potential for convergence between intervention principles-or at least an absence of conflict between them-matters for both the theory and practice of pediatric ethics. This article builds on the recent work of a diverse group of pediatric ethicists tasked with identifying consensus guidelines for pediatric decision-making.

How Seeking Transfer Often Fails to Help Define Medically Inappropriate Treatment.

On September 1, 2023, Texas made important revisions to it its decades-old statute granting legal safe harbor immunity to physicians who withhold or withdraw life-sustaining treatment over the objection of critically ill patients' surrogate decision-makers. However, lawmakers left untouched glaring flaws in a key safeguard for patients-the transfer option. The transfer option is ethically important because, when no hospital is willing to accept the patient in transfer, that fact is taken as strong evidence that the surrogates' treatment requests fall outside accepted medical practice. But there are serious shortcomings in how the transfer option is carried out in Texas and many other states, which undermines the ethical usefulness of the process. We identify these shortcomings and recommend revisions to state statutes and professional guidelines to overcome them.

Gestational Carrier Pregnancies: Legal and Ethical Considerations for Pediatricians.

This case explores the legal and ethical considerations for pediatricians surrounding gestational carrier pregnancies in the United States. Because of high success rates for assisted reproduction, state laws supporting same-sex adoption and surrogacy, and established legal precedents, gestational carrier pregnancies are increasingly common. The case presented involves a gestational carrier in preterm labor at 30 weeks' gestation with malpositioned twins who declines a cesarean delivery. Three commentaries are presented. The first highlights the importance of understanding the ethical implications of gestational carrier pregnancies in prenatal counseling. The second commentary emphasizes the pregnant person's right to autonomy and bodily integrity, and discusses considerations in surrogacy pregnancies, including the authority to authorize a cesarean delivery, valid informed consent, and decision-making for neonates. The third commentary discusses autonomy, emphasizing the importance of contracts in surrogacy pregnancies, and suggests that, in the case of a conflict between the gestational carrier and the intended parent(s), the gestational carrier's preference should be decisive regarding medical care during pregnancy. These discussions highlight key concepts for ethically informed and family-centered care in gestational carrier pregnancies and deliveries.

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.

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.

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.

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.

A brain-based definition of death and criteria for its determination after arrest of circulation or neurologic function in Canada: a 2023 clinical practice guideline.

This 2023 Clinical Practice Guideline provides the biomedical definition of death based on permanent cessation of brain function that applies to all persons, as well as recommendations for death determination by circulatory criteria for potential organ donors and death determination by neurologic criteria for all mechanically ventilated patients regardless of organ donation potential. This Guideline is endorsed by the Canadian Critical Care Society, the Canadian Medical Association, the Canadian Association of Critical Care Nurses, Canadian Anesthesiologists' Society, the Canadian Neurological Sciences Federation (representing the Canadian Neurological Society, Canadian Neurosurgical Society, Canadian Society of Clinical Neurophysiologists, Canadian Association of Child Neurology, Canadian Society of Neuroradiology, and Canadian Stroke Consortium), Canadian Blood Services, the Canadian Donation and Transplantation Research Program, the Canadian Association of Emergency Physicians, the Nurse Practitioners Association of Canada, and the Canadian Cardiovascular Critical Care Society.

RéSUMé: Ces Lignes directrices de pratique clinique 2023 Lignes directrices de pratique clinique dicale du décès basée sur l'arrêt permanent de la fonction cérébrale qui s'applique à toute personne, ainsi que des recommandations pour la détermination du décès par des critères circulatoires pour des donneurs d'organes potentiels et des recommandations pour la détermination du décès par des critères neurologiques pour tous les patients sous ventilation mécanique, indépendamment de leur potentiel de donneur d'organes. Les présentes Lignes directrices sont approuvées par la Société canadienne de soins intensifs, l'Association médicale canadienne, l'Association canadienne des infirmiers/infirmières en soins intensifs, la Société canadienne des anesthésiologistes, la Fédération des sciences neurologiques du Canada (représentant la Société canadienne de neurologie, la Société canadienne de neurochirurgie, la Société canadienne de neurophysiologie clinique, l'Association canadienne de neurologie pédiatrique, la Société canadienne de neuroradiologie et le Consortium neurovasculaire canadien), la Société canadienne du sang, le Programme de recherche en don et transplantation du Canada, l'Association canadienne des médecins d'urgence, l'Association des infirmières et infirmiers praticiens du Canada, et la Société canadienne de soins intensifs cardiovasculaires (CANCARE) et la Société canadienne de pédiatrie.

Navigating disagreement and conflict in the context of a brain-based definition of death.

In this paper, we discuss situations in which disagreement or conflict arises in the critical care setting in relation to the determination of death by neurologic criteria, including the removal of ventilation and other somatic support. Given the significance of declaring a person dead for all involved, an overarching goal is to resolve disagreement or conflict in ways that are respectful and, if possible, relationship preserving. We describe four different categories of reasons for these disagreements or conflicts: 1) grief, unexpected events, and needing time to process these events; 2) misunderstanding; 3) loss of trust; and 4) religious, spiritual, or philosophical differences. Relevant aspects of the critical care setting are also identified and discussed. We propose several strategies for navigating these situations, appreciating that these may be tailored for a given care context and that multiple strategies may be helpfully used. We recommend that health institutions develop policies that outline the process and steps involved in addressing situations where there is ongoing or escalating conflict. These policies should include input from a broad range of stakeholders, including patients and families, as part of their development and review.

RéSUMé: Dans cet article, nous discutons des situations dans lesquelles un désaccord ou un conflit survient dans le contexte des soins intensifs en ce qui concerne une détermination de décès selon des critères neurologiques, y compris le retrait de la ventilation et d'autres assistances somatiques. Compte tenu de l'importance pour toutes les personnes impliquées de déclarer une personne décédée, un objectif primordial est de résoudre les désaccords ou les conflits de manière respectueuse et, si possible, de préserver les relations. Nous décrivons quatre catégories différentes de raisons causant ces désaccords ou conflits : 1) le chagrin, des événements inattendus et le besoin de temps pour accepter ces événements; 2) les malentendus; 3) la perte de confiance; et 4) les différences religieuses, spirituelles ou philosophiques. Les aspects pertinents du milieu des soins intensifs sont également identifiés et discutés. Nous proposons plusieurs stratégies pour gérer ces situations, en étant conscients que celles-ci peuvent être adaptées à un contexte de soins donné et que plusieurs stratégies peuvent être utiles à appliquer. Nous recommandons que les établissements de santé élaborent des politiques qui décrivent le processus et les étapes nécessaires pour faire face aux situations où il y a un conflit en cours ou qui s'intensifie. Dans le cadre de leur élaboration et de leur examen, ces politiques devraient inclure les commentaires d'un large éventail d'intervenants, y compris les patients et les familles.

Consent for determination of death by neurologic criteria in Canada: an analysis of legal and ethical authorities, and consensus-based working group recommendations.

This article addresses the following question: should physicians obtain consent from the patient (through an advance directive) or their surrogate decision-maker to perform the assessments, evaluations, or tests necessary to determine whether death has occurred according to neurologic criteria? While legal bodies have not yet provided a definitive answer, significant legal and ethical authority holds that clinicians are not required to obtain family consent before making a death determination by neurologic criteria. There is a near consensus among available professional guidelines, statutes, and court decisions. Moreover, prevailing practice does not require consent to test for brain death. While arguments for requiring consent have some validity, proponents cannot surmount weightier considerations against imposing a consent requirement. Nevertheless, even though clinicians and hospitals may not be legally required to obtain consent, they should still notify families about their intent to determine death by neurologic criteria and offer temporary reasonable accommodations when feasible. This article was developed with the legal/ethics working group of the project, A Brain-Based Definition of Death and Criteria for its Determination After Arrest of Circulation or Neurologic Function in Canada developed in collaboration with the Canadian Critical Care Society, Canadian Blood Services, and the Canadian Medical Association. The article is meant to provide support and context for this project and is not intended to specifically advise physicians on legal risk, which in any event is likely jurisdiction dependent because of provincial or territorial variation in the laws. The article first reviews and analyzes ethical and legal authorities. It then offers consensus-based recommendations regarding consent for determination of death by neurologic criteria in Canada.

RéSUMé: Cet article répond à la question suivante : les médecins doivent-ils obtenir le consentement du patient (au moyen d'une directive médicale anticipée) ou de son mandataire spécial pour réaliser les examens, évaluations ou tests nécessaires pour déterminer si le décès est survenu selon des critères neurologiques? Bien que les organes juridiques n'aient pas encore fourni de réponse définitive, selon la jurisprudence et l'éthique, les cliniciens ne sont pas tenus d'obtenir le consentement de la famille avant de procéder à une détermination de décès selon des critères neurologiques. Il y a un quasi-consensus dans les lignes directrices professionnelles, les lois et les décisions judiciaires disponibles. De plus, la pratique courante n'exige pas le consentement pour procéder aux examens permettant de déterminer une mort cérébrale. Bien que les arguments en faveur de l'exigence d'un consentement aient une certaine validité, leurs défenseurs ne peuvent pas surmonter des considérations plus importantes contre l'imposition d'une exigence de consentement. Néanmoins, même si les cliniciens et les hôpitaux ne sont peut-être pas légalement tenus d'obtenir le consentement, ils devraient tout de même aviser les familles de leur intention de déterminer le décès selon des critères neurologiques et offrir des aménagements raisonnables temporaires lorsque cela est possible. Cet article a été mis au point en collaboration avec le groupe de travail sur les questions légales et éthiques du projet de Définition uniformisée de la mort cérébrale et de critères fondés sur des données probantes pour sa détermination au Canada et développé avec la Société canadienne de soins intensifs, la Société canadienne du sang et l'Association médicale canadienne. Cet article vise à étayer et fournir un contexte au projet et ne vise pas à conseiller spécifiquement les médecins sur le risque juridique qui, de toute façon, varie probablement en raison des différences légales provinciales et territoriales. L'article commence par passer en revue et analyser la jurisprudence et les considérations éthiques. Il propose ensuite des recommandations consensuelles concernant le consentement pour la détermination du décès selon des critères neurologiques au Canada.

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.

Legal considerations for the definition of death in the 2023 Canadian Brain-Based Definition of Death Clinical Practice Guideline.

PURPOSE: The new 2023 Canadian Brain-Based Definition of Death Clinical Practice Guideline provides a new definition of death as well as clear procedures for the determination of death (i.e., when that definition is met). Since physicians must practice in accordance with existing laws, this legal analysis describes the existing legal definitions of death in Canada and considers whether the new Guideline is consistent with those definitions. It also considers how religious freedom and equality in the Canadian Charter of Rights and Freedoms might apply to the diagnosis of brain death. METHOD: We performed a legal analysis in accordance with standard procedures of legal research and analysis-including reviews of statutory law, case law, and secondary legal literature. The draft paper was discussed by the Legal-Ethical Working Subgroup and presented to the larger Guideline project team for comment. RESULTS AND CONCLUSION: There are some differences between the wording of the new Guideline and existing legal definitions. To reduce confusion, these should be addressed through revising the legal definitions. In addition, future challenges to brain death based on the Charter of Rights and Freedoms can be anticipated. Facilities should consider and adopt policies that identify what types of accommodation of religious objection and what limits to accommodation are reasonable and well-justified.

RéSUMé: OBJECTIF: Les nouvelles Lignes directrices canadiennes de pratique clinique pour la détermination du décès cérébral de 2023 fournissent une nouvelle définition du décès ainsi que des procédures claires pour la détermination du décès (c.-à-d. lorsque cette définition est respectée). Étant donné que les médecins doivent exercer conformément aux lois en vigueur, la présente analyse juridique décrit les définitions juridiques existantes du décès au Canada et vise à déterminer si les nouvelles Lignes directrices sont conformes à ces définitions. Cette analyse examine également comment la liberté de religion et l'égalité dans la Charte canadienne des droits et libertés pourraient s'appliquer au diagnostic de mort cérébrale. MéTHODE: Nous avons effectué une analyse juridique conformément aux procédures habituelles de recherche et d'analyse juridiques, y compris l'examen du droit écrit, de la jurisprudence et de la littérature juridique secondaire. L'ébauche du document a été examinée par le sous-groupe de travail juridico-éthique et présentée à l'équipe élargie du projet des Lignes directrices pour commentaires. RéSULTATS ET CONCLUSIONS: Il existe certaines différences entre le libellé des nouvelles Lignes directrices et les définitions juridiques existantes. Pour réduire la confusion, il convient de remédier à ces problèmes en révisant les définitions juridiques. De plus, les défis futurs à la mort cérébrale fondés sur la Charte des droits et libertés peuvent être anticipés. Les établissements devraient envisager et adopter des politiques qui précisent quels types d'accommodement d'objection religieuse et quelles limites d'accommodement sont raisonnables et bien justifiés.

Legislation and Policy Recommendations on Organ and Tissue Donation and Transplantation From an International Consensus Forum.

There is a shared global commitment to improving baseline donation and transplantation performance metrics in a manner consistent with ethics and local cultural and social factors. The law is one tool that can help improve these metrics. Although legal systems vary across jurisdictions, our objective was to create expert, consensus guidance for law and policymakers on foundational issues underlying organ and tissue donation and transplantation (OTDT) systems around the world. Methods: Using the nominal group technique, a group composed of legal academics, a transplant coordinator/clinician, and a patient partner identified topic areas and recommendations on foundational legal issues. The recommendations were informed by narrative literature reviews conducted by group members based on their areas of expertise, which yielded a range of academic articles, policy documents, and sources of law. Best practices were identified from relevant sources in each subtopic, which formed the basis of the recommendations contained herein. Results: We reached consensus on 12 recommendations grouped into 5 subtopics: (i) legal definitions and legislative scope, (ii) consent requirements for donation' (iii) allocation of organs and tissue' (iv) operation of OTDT systems' and (v) travel for transplant and organ trafficking. We have differentiated between those foundational legal principles for which there is a firm basis of support with those requiring further consideration and resolution. Seven such areas of controversy are identified and discussed alongside relevant recommendations. Conclusions: Our recommendations encompass some principles staunchly enshrined in the OTDT landscape (eg, the dead donor rule), whereas others reflect more recent developments in practice (eg, mandatory referral). Although some principles are widely accepted, there is not always consensus as to how they ought to be implemented. As the OTDT landscape continues to evolve, recommendations must be reconsidered for the law to keep pace with developments in knowledge, technology, and practice.