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.

Traveling Across States for Prohibited Treatments: Medical Aid in Dying and Looming Battles Over Abortion.

This JGIM Perspective discusses new and emerging challenges with accessing controversial medical therapies like medical aid in dying and abortion. While some states permit these therapies for only their residents, other states prohibit these therapies for their own residents. We summarize recent developments and growing challenges for clinicians treating "medical tourism" patients from other jurisdictions.

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.

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.

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.

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.

Neurologic Diseases and Medical Aid in Dying: Aid-in-Dying Laws Create an Underclass of Patients Based on Disability.

Terminally ill patients in 10 states plus Washington, D.C. have the right to take prescribed medications to end their lives (medical aid in dying). But otherwise-eligible patients with neuromuscular disabilities (ALS and other illnesses) are excluded if they are physically unable to "self-administer" the medications without assistance. This exclusion is incompatible with disability rights laws that mandate assistance to provide equal access to health care. This contradiction between aid-in-dying laws and disability rights laws can force patients and clinicians into violating one or the other, potentially creating an underclass of patients denied medical care that is available to those with other (less physically disabling) terminal illnesses. The immediacy of this issue is demonstrated by a lawsuit in Federal court filed in August 2021, requesting assistance in self-administration for terminally ill patients with neuromuscular diseases. This paper discusses the background of this conflict, the ethical issues at the heart of the dilemma, and recommends potential remedies.

Making Medical Treatment Decisions for Unrepresented Patients in the ICU. An Official American Thoracic Society/American Geriatrics Society Policy Statement.

Background and Rationale: ICU clinicians regularly care for patients who lack capacity, an applicable advance directive, and an available surrogate decision-maker. Although there is no consensus on terminology, we refer to these patients as "unrepresented." There is considerable controversy about how to make treatment decisions for these patients, and there is significant variability in both law and clinical practice.Purpose and Objectives: This multisociety statement provides clinicians and hospital administrators with recommendations for decision-making on behalf of unrepresented patients in the critical care setting.Methods: An interprofessional, multidisciplinary expert committee developed this policy statement by using an iterative consensus process with a diverse working group representing critical care medicine, palliative care, pediatric medicine, nursing, social work, gerontology, geriatrics, patient advocacy, bioethics, philosophy, elder law, and health law.Main Results: The committee designed its policy recommendations to promote five ethical goals: 1) to protect highly vulnerable patients, 2) to demonstrate respect for persons, 3) to provide appropriate medical care, 4) to safeguard against unacceptable discrimination, and 5) to avoid undue influence of competing obligations and conflicting interests. These recommendations also are intended to strike an appropriate balance between excessive and insufficient procedural safeguards. The committee makes the following recommendations: 1) institutions should offer advance care planning to prevent patients at high risk for becoming unrepresented from meeting this definition; 2) institutions should implement strategies to determine whether seemingly unrepresented patients are actually unrepresented, including careful capacity assessments and diligent searches for potential surrogates; 3) institutions should manage decision-making for unrepresented patients using input from a diverse interprofessional, multidisciplinary committee rather than ad hoc by treating clinicians; 4) institutions should use all available information on the patient's preferences and values to guide treatment decisions; 5) institutions should manage decision-making for unrepresented patients using a fair process that comports with procedural due process; 6) institutions should employ this fair process even when state law authorizes procedures with less oversight.Conclusions: This multisociety statement provides guidance for clinicians and hospital administrators on medical decision-making for unrepresented patients in the critical care setting.

An Official ATS/AACN/ACCP/ESICM/SCCM Policy Statement: Responding to Requests for Potentially Inappropriate Treatments in Intensive Care Units.

BACKGROUND: There is controversy about how to manage requests by patients or surrogates for treatments that clinicians believe should not be administered. PURPOSE: This multisociety statement provides recommendations to prevent and manage intractable disagreements about the use of such treatments in intensive care units. METHODS: The recommendations were developed using an iterative consensus process, including expert committee development and peer review by designated committees of each of the participating professional societies (American Thoracic Society, American Association for Critical Care Nurses, American College of Chest Physicians, European Society for Intensive Care Medicine, and Society of Critical Care). MAIN RESULTS: The committee recommends: (1) Institutions should implement strategies to prevent intractable treatment conflicts, including proactive communication and early involvement of expert consultants. (2) The term "potentially inappropriate" should be used, rather than futile, to describe treatments that have at least some chance of accomplishing the effect sought by the patient, but clinicians believe that competing ethical considerations justify not providing them. Clinicians should explain and advocate for the treatment plan they believe is appropriate. Conflicts regarding potentially inappropriate treatments that remain intractable despite intensive communication and negotiation should be managed by a fair process of conflict resolution; this process should include hospital review, attempts to find a willing provider at another institution, and opportunity for external review of decisions. When time pressures make it infeasible to complete all steps of the conflict-resolution process and clinicians have a high degree of certainty that the requested treatment is outside accepted practice, they should seek procedural oversight to the extent allowed by the clinical situation and need not provide the requested treatment. (3) Use of the term "futile" should be restricted to the rare situations in which surrogates request interventions that simply cannot accomplish their intended physiologic goal. Clinicians should not provide futile interventions. (4) The medical profession should lead public engagement efforts and advocate for policies and legislation about when life-prolonging technologies should not be used. CONCLUSIONS: The multisociety statement on responding to requests for potentially inappropriate treatments in intensive care units provides guidance for clinicians to prevent and manage disputes in patients with advanced critical illness.

Brain death: legal obligations and the courts.

Brain death, or death determined by neurologic criteria, has been legally adopted in all U.S. states for decades. Despite its long-established history, a lack of clear understanding has led to disputes requiring a legal forum for resolution. Recently, physicians and hospitals across the country have been impacted by a growing number of disputes about brain death. The authors offer clinicians a historical perspective on the evolution of brain death as a legal cause of death in the United States. They then review the more common legal categories of disputes encountered, including representative court cases for each. This overview provides physicians with a general legal perspective on brain death so they may better appreciate the pertinent issues if and when later confronted.

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 Decision-Making Practices for Unrepresented Residents in Nursing Homes.

OBJECTIVES: Unrepresented adults are individuals who lack decision-making capacity and have neither an available surrogate decision maker nor an applicable advance directive. Currently, the prevalence of unrepresented nursing home (NH) residents and how medical decisions are made is unknown. We examined (1) the prevalence of unrepresented NH residents, (2) NH policies and procedures to address medical decision making for those residents, and (3) NH staff's perceptions of medical decision making for unrepresented residents. DESIGN: We reviewed resident medical records and NH policy and procedure documents. We also conducted a survey of NH staff using an investigator-developed questionnaire. SETTING AND PARTICIPANTS: Sixty-six staff members recruited from 3 NHs (433 residents total) in 1 metropolitan area of Georgia, USA. METHODS: Medical records and policy and procedure documents were reviewed using preset criteria. The survey included 31 structured and open-ended questions regarding medical decision-making practices for unrepresented residents (eg, awareness of medical decision-making processes, experiences in medical decision making, and suggestions to improve practice). We used descriptive statistics and conventional content analysis. RESULTS: Four residents (1%) met the criteria of being unrepresented. We found no written statements that specifically addressed medical decision making for unrepresented residents in the participating NHs. Of 66 survey participants, 11 had been involved in medical decision making for unrepresented residents. The most common decisions involved do-not-resuscitate orders, major medical and surgical treatments, and life-sustaining treatments. These decisions were made primarily by relying on the resident's physician or through discussions within the facility's interdisciplinary team. Suggestions included adopting explicit mechanisms or protocols related to decision making for unrepresented residents, education/training, and resources for group-based decision making. CONCLUSIONS AND IMPLICATIONS: Although prevalence in the 3 NHs was low, NH care providers, ethical and legal professionals, and other key stakeholders should discuss practical approaches and policies to systematically identify unrepresented residents and to improve NHs' medical decision-making practices for them.

TRIAD VIII: Nationwide Multicenter Evaluation to Determine Whether Patient Video Testimonials Can Safely Help Ensure Appropriate Critical Versus End-of-Life Care.

OBJECTIVE: End-of-life interventions should be predicated on consensus understanding of patient wishes. Written documents are not always understood; adding a video testimonial/message (VM) might improve clarity. Goals of this study were to (1) determine baseline rates of consensus in assigning code status and resuscitation decisions in critically ill scenarios and (2) determine whether adding a VM increases consensus. METHODS: We randomly assigned 2 web-based survey links to 1366 faculty and resident physicians at institutions with graduate medical education programs in emergency medicine, family practice, and internal medicine. Each survey asked for code status interpretation of stand-alone Physician Orders for Life-Sustaining Treatment (POLST) and living will (LW) documents in 9 scenarios. Respondents assigned code status and resuscitation decisions to each scenario. For 1 of 2 surveys, a VM was included to help clarify patient wishes. RESULTS: Response rate was 54%, and most were male emergency physicians who lacked formal advanced planning document interpretation training. Consensus was not achievable for stand-alone POLST or LW documents (68%-78% noted "DNR"). Two of 9 scenarios attained consensus for code status (97%-98% responses) and treatment decisions (96%-99%). Adding a VM significantly changed code status responses by 9% to 62% (P ≤ 0.026) in 7 of 9 scenarios with 4 achieving consensus. Resuscitation responses changed by 7% to 57% (P ≤ 0.005) with 4 of 9 achieving consensus with VMs. CONCLUSIONS: For most scenarios, consensus was not attained for code status and resuscitation decisions with stand-alone LW and POLST documents. Adding VMs produced significant impacts toward achieving interpretive consensus.

Reason-Giving and Medical Futility: Contrasting Legal and Social Discourse in the United States With the United Kingdom and Ontario, Canada.

Disputes regarding life-prolonging treatments are stressful for all parties involved. These disagreements are appropriately almost always resolved with intensive communication and negotiation. Those rare cases that are not require a resolution process that ensures fairness and due process. We describe three recent cases from different countries (the United States, United Kingdom, and Ontario, Canada) to qualitatively contrast the legal responses to intractable, policy-level disputes regarding end-of-life care in each of these countries. In so doing, we define the continuum of clinical and social utility among different types of dispute resolution processes and emphasize the importance of public reason-giving in the societal discussion regarding policy-level solutions to end-of-life treatment disputes. We argue that precedential, publicly available, written rulings for these decisions most effectively help to move the social debate forward in a way that is beneficial to clinicians, patients, and citizens. This analysis highlights the lack of such rulings within the United States.