Reflections on Charlie Gard and the Best Interests Standard From Both Sides of the Atlantic Ocean.

Charlie Gard (August 4, 2016, to July 28, 2017) was an infant in the United Kingdom who was diagnosed with an encephalopathic form of mitochondrial DNA depletion syndrome caused by a mutation in the RRM2B gene. Charlie's parents raised £1.3 million (∼$1.6 million US) on a crowdfunding platform to travel to New York to pursue experimental nucleoside bypass treatment, which was being used to treat a myopathic form of mitochondrial DNA depletion syndrome caused by mutations in a different gene (TK2). The case made international headlines about what was in Charlie's best interest. In the medical ethics community, it raised the question of whether best interest serves as a guidance principle (a principle that provides substantive directions as to how decisions are to be made), an intervention principle (a principle specifying the conditions under which third parties are to intervene), both guidance and intervention, or neither. I show that the United Kingdom uses best interest as both guidance and intervention, and the United States uses best interest for neither. This explains why the decision to withdraw the ventilator without attempting nucleoside bypass treatment was the correct decision in the United Kingdom and why the opposite conclusion would have been reached in the United States.

Ventilator Triage Policies During the COVID-19 Pandemic at U.S. Hospitals Associated With Members of the Association of Bioethics Program Directors.

BACKGROUND: The coronavirus disease 2019 pandemic has or threatens to overwhelm health care systems. Many institutions are developing ventilator triage policies. OBJECTIVE: To characterize the development of ventilator triage policies and compare policy content. DESIGN: Survey and mixed-methods content analysis. SETTING: North American hospitals associated with members of the Association of Bioethics Program Directors. PARTICIPANTS: Program directors. MEASUREMENTS: Characteristics of institutions and policies, including triage criteria and triage committee membership. RESULTS: Sixty-seven program directors responded (response rate, 91.8%); 36 (53.7%) hospitals did not yet have a policy, and 7 (10.4%) hospitals' policies could not be shared. The 29 institutions providing policies were relatively evenly distributed among the 4 U.S. geographic regions (range, 5 to 9 policies per region). Among the 26 unique policies analyzed, 3 (11.3%) were produced by state health departments. The most frequently cited triage criteria were benefit (25 policies [96.2%]), need (14 [53.8%]), age (13 [50.0%]), conservation of resources (10 [38.5%]), and lottery (9 [34.6%]). Twenty-one (80.8%) policies use scoring systems, and 20 of these (95.2%) use a version of the Sequential Organ Failure Assessment score. Among the policies that specify the triage team's composition (23 [88.5%]), all require or recommend a physician member, 20 (87.0%) a nurse, 16 (69.6%) an ethicist, 8 (34.8%) a chaplain, and 8 (34.8%) a respiratory therapist. Thirteen (50.0% of all policies) require or recommend that those making triage decisions not be involved in direct patient care, but only 2 (7.7%) require that their decisions be blinded to ethically irrelevant considerations. LIMITATION: The results may not be generalizable to institutions without academic bioethics programs. CONCLUSION: Over one half of respondents did not have ventilator triage policies. Policies have substantial heterogeneity, and many omit guidance on fair implementation. PRIMARY FUNDING SOURCE: None.

Who Gets Scarce Medical Resources during a COVID-19 Pandemic? Let's not beat about the Bush.

Except for such rare situations where it might be determined absence of physician's imputability, physicians cannot ̳save the most lives while respecting the legal rights of the patient' without violating the overarching principle ̳every human life has equal value'. Arguing to the contrary is a conscious hypocritical attitude, or in other words, a fiction. Medical law and ethics long since carry with its various fictions. Furthermore, in a public health emergency such as the current COVID-19 crisis, medical law and ethics change and shift the focus from the patient-centered model towards the public health-centered model. Under these particular circumstances, this fiction becomes striking, and it can no longer be swept under the rug. As health emergencies can happen anywhere, anytime, the patient prioritization in circumstances of limited resources should be accepted. Medical law and ethics should back away from strict commitment to placing paramount emphasis on the value of human life. It is time for medical law and ethics to leave taboo-related hypocritical attitudes, and venture to make a historic compromise. To do so, three principles should be met: subsidiarity, proportionality, and consensus and social proof.

The Ethics of Continued Life-Sustaining Treatment for those Diagnosed as Brain-dead.

Given the long-standing controversy about whether the brain-dead should be considered alive in an irreversible coma or dead despite displaying apparent signs of life, the ethical and policy issues posed when family members insist on continued treatment are not as simple as commentators have claimed. In this article, we consider the kind of policy that should be adopted to manage a family's insistence that their brain-dead loved one continues to receive supportive care. We argue that while it would be ethically inappropriate to continue to devote scarce acute care resources to such patients in a hospital setting, it may not be ethically inappropriate for patients to receive these resources in certain other settings. Thus, if a family insists on continuing to care for their brain-dead loved at their home, we should not, from a policy perspective, interfere with the family's wishes. We also argue that healthcare professionals should make some effort to facilitate the transfer of brain-dead patients to these other settings when families insist on continued treatment despite being informed about the lack of any potential for recovery of consciousness. Our arguments are strengthened by the fact that patients in a persistent vegetative state, who, when correctly diagnosed, also have no potential for recovery of consciousness, are routinely transferred from hospitals to nursing homes or long-term care facilities where they continue to be ventilated, tube fed and to receive other supportive care. We also briefly explore the question of who should be responsible for the costs of such treatment at the long-term care facility.

[Controversy in the treatment of a critically ill neonate in a rural health service]. / Controversias sobre el tratamiento de un neonato críticamente enfermo en un servicio de salud rural.

Cardiopulmonary resuscitation of newborns with perinatal hypoxia faces serious ethical, moral, medical and legal problems, particularly in rural areas. Ethical and moral issues have to do with the medical-parents relationship; with values, preferences and priorities of each of these groups; and with the scarce resources situation. Medical-technical problems are related to asphyxia complications, and their prognostic and therapeutic implications. Legal considerations arising from the fact of killing or letting die. In this article is analyzed the real case of a neonate with severe perinatal hypoxia in order to enhance the understanding of the incorporation of ethics in everyday clinical practice.

La reanimación cardiopulmonar de recién nacidos con hipoxia perinatal grave enfrenta problemas éticos, morales, médicos y legales, particularmente en áreas rurales. Los problemas éticos y morales tienen que ver con la relación médico-padres; con los valores, preferencias y prioridades de cada uno de estos grupos, y con la situación de la escasez de recursos. Los problemas técnico-médicos están relacionados con las complicaciones relacionadas a la asfixia, así como con sus implicaciones pronósticas y terapéuticas. Mientras que las consideraciones legales derivan del hecho de matar o dejar morir. En este artículo se discute el caso real de un neonato con asfixia perinatal grave con el propósito de fortalecer el entendimiento de la incorporación de la ética de la práctica clínica cotidiana.

Tracheostomies and assisted ventilation in children with profound disabilities: navigating family and professional values.

Parental requests for gastrostomies, tracheostomies, or assisted ventilation in children with profound disabilities raise ethical concerns about children's interests, parental decision-making, and health care costs. The underlying concern for many relates to the perceived value of these children. Clinicians should make efforts to appreciate the family's perspective regarding children with profound disabilities who require respiratory and nutritional medical support. Finding opportunities to learn about the family members' lives outside of the health care setting may facilitate a deeper understanding of what it means to live with a child who has profound disabilities. In conversations with families, referring to interventions as futile and conditions as lethal will obscure the value-based nature of these decisions. Respiratory and nutritional interventions are not clearly against the interests of most children. Even for children with a limited life span, life-sustaining interventions may be important for the child and family. Health care costs are a serious societal issue; however, the costs associated with profound disabilities are not the most significant contributor. Societal decisions not to provide life-sustaining health care to children with profound disabilities would require a public process. Clinicians may have personal views regarding decisions for their own family or for their vision for society. However, clinicians have professional obligations to families who have different values. It is important to present balanced information and support parental decision-making so parents may decide to forgo or use life-sustaining interventions according to their values and goals.

Ethical challenges in home mechanical ventilation: a secondary analysis.

The aim of this study was to explore the ethical challenges in home mechanical ventilation based on a secondary analysis of qualitative empirical data. The data included perceptions of healthcare professionals in hospitals and community health services and family members of children and adults using home mechanical ventilation. The findings show that a number of ethical challenges, or dilemmas, arise at all levels in the course of treatment: deciding who should be offered home mechanical ventilation, respect for patient and family wishes, quality of life, dignity and equal access to home mechanical ventilation. Other challenges were the impacts home mechanical ventilation had on the patient, the family, the healthcare services and the allocation of resources. A better and broader understanding of these issues is crucial in order to improve the quality of care for both patient and family and assist healthcare professionals involved in home mechanical ventilation to make decisions for the good of the patient and his or her family.

Pandemic preparedness planning: will provisions for involuntary termination of life support invite active euthanasia?

A number of influential reports on influenza pandemic preparedness include recommendations for extra-autonomous decisions to withdraw mechanical ventilation from some patients, who might still benefit from this technology, when demand for ventilators exceeds supply. An unintended implication of recommendations for nonvoluntary and involuntary termination of life support is that it make pandemic preparedness plans vulnerable to patients' claims for assisted suicide and active euthanasia. Supporters of nonvoluntary passive euthanasia need to articulate why it is both morally different and morally superior to voluntary active euthanasia if they do not wish to invite expansion of end-of-life options during health system catastrophe.

Aspectos éticos de la ventilación mecánica domiciliaria / Ethical issues of home mechanical ventilation

La mortalidad infantil ha disminuido gracias a los cuidados intensivos neonatales y pediátricos, esto a su vez ha contribuido a la sobrevida de niños con secuelas graves y dependencias tecnológicas especiales. La ventilación mecánica se utiliza como medida de soporte vital, en un intento de mejorar constantes biológicas y la calidad de vida del paciente y su entorno familiar; sin embargo, no siempre se obtiene el resultado esperado y las cargas sicológicas, sociales y financieras constituyen procesos que requieren desarrollar evaluaciones en el dominio de la bioética. Los desafíos y dilemas clínicos al instaurar ventilación no invasiva (VNI) se diferencian según las patologías y sus pronósticos. La asistencia ventilatoria no invasiva (AVNI), en algunos pacientes, logrará una disminución franca del esfuerzo respiratorio consiguiendo mejorar el crecimiento y desarrollo del sistema pulmonar, permitiendo luego de un tiempo su suspensión o mantenerla en forma crónica estable. En otras situaciones con deterioro progresivo y/o otras co-morbilidades, desde la dimensión bioética puede ser controversial, el inicio, mantención y transición hacia estrategias de mayor complejidad. En este documento se revisan los aspectos éticos que deben ser considerados en la toma de decisión de brindar AVNI en niños con enfermedades crónicas, en la perspectiva de los nuevos desafíos terapéuticos posibles con tecnología aplicada.

Care of the chronic tracheostomy.

A minority of patients with neuromuscular disease require placement of a tracheostomy, usually for the purpose of providing mechanical ventilation. Often the tracheostomy is performed during a hospital admission for an acute illness. The debate about the appropriate timing of tracheostomy in critically ill patients has not been resolved; however, the weight of evidence now favors performing a tracheostomy early (within 7 d of translaryngeal intubation) if the period of mechanical ventilation is likely to be prolonged beyond 3 weeks. For patients with chronic progressive weakness who develop respiratory difficulty, the consensus of opinion is that tracheostomy should be performed in patients with severe bulbar involvement, inability to effectively cough up secretions despite mechanical aids for secretion clearance, or for those who are unable to tolerate or fail noninvasive ventilation. The decision to perform tracheostomy in patients with chronic neuromuscular weakness involves consideration of several factors, including complications, resources, quality of life, ethical issues, cosmetic issues, and cost. Complications from tracheostomy and physician-perceived poor quality of life often lead to a negative bias, such that some patients may be denied this life-saving procedure. Special training is needed to provide long-term tracheostomy care, and an organized approach should be followed to decannulate patients who recover from their acute illness. Appropriate and skilled care could significantly improve the longevity and quality of life of those patients with neuromuscular disease who have a tracheostomy for long-term ventilation.

Acceptance, avoidance, and ambiguity: conflicting social values about childhood disability.

Advances in medical technology now permit children who need ventilator assistance to live at home rather than in hospitals or institutions. What does this ventilator-dependent life mean to children and their families? The impetus for this essay comes from a study of the moral experience of 12 Canadian families--parents, ventilator-dependent child, and well siblings. These families express great love for their children, take on enormous responsibilities for care, live with uncertainty, and attempt to create "normal" home environments. Nevertheless, they experience social isolation, sometimes even from their extended families and health care providers. Their lives are constrained in many ways. The challenges faced by parents of technology-dependent children raise questions of justice within society and within families.

The neurologic assessment and treatment of the "difficult to extubate" patient.

Neurologic issues are involved in the patient who is difficult to wean. Assessing the patient and performing a complete neurologic examination are important when developing a successful weaning strategy. The neurologist contributes to this process by providing expertise in the various neurologic conditions and skill in performing a thorough neurologic examination.