Arguments for a ban on pediatric intersex surgery: A dis/analogy with Jehovah witness blood transfusion.

This article argues for a ban on the performance of medically unnecessary genital normalizing surgeries as part of assigning a binary sex/gender to infants with intersex conditions on the basis of autonomy, regardless of etiology. It does this via a dis/analogy with the classic case in bioethics of Jehovah Witness (JW) parents' inability to refuse life-saving blood transfusions for their minor children. Both cases address ethical medical practice in situations where parents are making irreversible medical decisions on the basis of values strongly held, identity, and relationship-shaping values-such as religious beliefs or beliefs regarding the inherent value of binary sex/gender-amidst ethical pluralism. Furthermore, it takes seriously-as we must in the intersex case-that the restriction of parents' right to choose will likely result in serious harms to potentially large percentage of patients, their families, and their larger communities. I address the objection that parents' capacity to choose is restricted in the JW case on the basis of the harm principle or a duty to nonmaleficence, given that the result of parent choice would be death. I provide evidence that this is mistaken from how we treat epistemic uncertainty in the JW case and from cases in which clinicians are ethically obligated to restrict the autonomy of nonminor patients. I conclude that we restrict the parents' right to choose in the JW case-and should in the case of pediatric intersex surgery-to secure patient's future autonomy.

The Ethics of Refusing Lifesaving Treatment Following a Failed Suicide Attempt.

AbstractInjuries from failed suicide attempts account for a large number of patients cared for in the emergency and trauma setting. While a fundamental underpinning of clinical ethics is that patients have a right to refuse treatment, individuals presenting with life-threating injuries resulting from suicide attempts are almost universally treated in this acute care setting. Here we discuss the limitations on physician ability to determine capacity in this setting and the challenges these pose in carrying out patient wishes.

Jehovah's Witnesses and the Normative Function of Indirect Consent.

In this case study, I consider Mr. A, a Jehovah's Witness with chronic vertebral osteomyelitis in need of surgical debridement. Prior to proceeding to the OR, he was unwilling either to explicitly consent to or refuse blood transfusion, while indicating he was open to transfusion intraoperatively, if the team judged it necessary. Ethics was consulted to determine if it would be morally justifiable for the team to proceed with blood transfusion during the course of surgery without Mr. A's documented consent to being transfused. I argue that in this case, what might be termed indirect consent-namely, delegating decision-making regarding some possible course of action without explicitly consenting to the course of action itself-may be sufficient for discharging the clinician's ethical obligation to obtain consent. Identifying information has been changed or omitted to protect patient confidentiality.

What Do We Owe to Patients Who Leave Against Medical Advice? The Ethics of AMA Discharges.

Discharges against medical advice (AMA) make up a significant number of hospital discharges in the United States, and often involve vulnerable patients who struggle to obtain adequate medical care. Unfortunately, much of the AMA discharge process focuses on absolving the medical center of liability for what happens to these patients once they leave the acute setting. Comparatively little attention is paid to the ethical obligations of the medical team once an informed decision to leave the acute care setting AMA has been made. Via a case narrative, we offer an ethical framework that we believe can help guide an ethically defensible AMA discharge process. By emphasizing our duty to provide the best care possible under the circumstances, we contend, our ethical obligations to promote the patient's best interests can still be met despite their decision to leave the acute setting against medical advice.

Pediatric Discharge From the Emergency Department Against Medical Advice.

In this Ethics Rounds we present a conflict regarding discharge planning for a febrile infant in the emergency department. The physician believes discharge would be unsafe and would constitute a discharge against medical advice. The child's mother believes her son has been through an already extensive and painful evaluation and would prefer to monitor her well-appearing son closely at home with a safety plan and a next-day outpatient visit. Commentators assess this case from the perspective of best interest, harm-benefit, conflict management, and nondiscriminatory care principles and prioritize a high-quality informed consent process. They characterize the formalization of discharge against medical advice as problematic. Pediatricians, a pediatric resident, ethicists, an attorney, and mediator provide a range of perspectives to inform ethically justifiable options and conflict resolution practices.

Barriers to Informed refusal in Korea / Obstáculos al rechazo informado en Corea / Barreiras à recusa informada na Coreia

Abstract In South Korea, the legal and cultural environment keeps terminally ill patients from making an informed refusal to a treatment the discontinuation of which can cause death. Act on Decisions on Life-Sustaining Treatment for Patients in Hospice and Palliative Care or at the End of Life allows several forms of informed refusal, but it is not enough. There is no explicit guarantee, at least under this law, of the right to refuse a treatment given during a period that has not reached an end-of-life process prescribed in the law. Dori, which the family of a terminal patient feels obligated to follow, makes them commit to doing what they believe is right as a family member without asking the patient's intention. Because it reduces the family's motivation to have a difficult talk about death and end-of-life with the patient, the patient is deprived of an opportunity to make a decision based on accurate information. In making a decision for the patient while patient is excluded, the family often ends up choosing a safe decision that puts physical survival first. In conclusion, the culture and the culturally influenced law are making it impractical for terminal patients to make an informed refusal.

Resumen: En Corea del Sur, el entorno legal y cultural impide a los pacientes terminales rechazar con conocimiento de causa un tratamiento cuya interrupción puede causar la muerte. La Ley de Decisiones sobre el Tratamiento de Mantenimiento de la Vida para Pacientes en Hospicio y Cuidados Paliativos o al Final de la Vida permite varias formas de rechazo informado, pero no es suficiente. No se garantiza explícitamente, al menos en esta ley, el derecho a rechazar un tratamiento administrado durante un periodo que no ha llegado a un proceso de final de vida prescrito en la ley. La ley Dori, que la familia de un paciente terminal se siente obligada a seguir, les hace comprometerse a hacer lo que creen correcto como familiares, sin preguntar la intención del paciente. Dado que reduce la motivación de la familia para tener una charla difícil sobre la muerte y el final de la vida con el paciente, éste se ve privado de la oportunidad de tomar una decisión basada en información precisa. Al tomar una decisión por el paciente mientras se le excluye, la familia suele acabar eligiendo una decisión segura que antepone la supervivencia física. En conclusión, la ley, influenciada por la cultura, está haciendo que sea poco práctico para los pacientes terminales hacer un rechazo informado.

Resumo Na Coreia do Sul, o ambiente legal e cultural mantém pacientes com doença terminal à parte de fazer uma recusa informada a um tratamento cuja descontinuação pode causar morte. O Ato sobre Decisões a respeito de Tratamento de Suporte à Vida para Pacientes em Lares de Idosos e Cuidados Paliativos ou ao Fim da Vida permite diversas formas de recusa informada mas não é suficiente. Não há uma garantia explícita, pelo menos sob esta lei, do direito de recusar um dado tratamento durante um período que não alcançou um processo de fim-da-vida prescrito na lei. Dori, que a família de um paciente terminal sente-se obrigada a seguir, faz com que eles se comprometam a fazer o que eles acreditam ser certo como um membro da família, sem perguntar a intenção do paciente. Na medida em que isto reduz a motivação da família em ter uma conversa difícil sobre morte e fim-da-vida com o paciente, o paciente é privado de uma oportunidade de tomar uma decisão baseada em informação precisa. Ao tomar uma decisão pelo paciente enquanto ele é excluído, a família frequentemente termina escolhendo uma decisão segura que coloca a sobrevivência física em primeiro lugar. Em conclusão, a cultura e a lei influenciada pela cultura estão tornando impraticável para pacientes terminais fazer uma recusa informada.

The Case of Billy Best: 25 Years Later.

Billy Best was diagnosed with Hodgkin lymphoma in 1994 at age 16 and became well-known when he ran away from home to avoid receiving further chemotherapy. His story became national news when, with the support of his adopted parents, he returned home and opted to use complementary and alternative medicine (CAM) instead of standard chemotherapy and radiation for his cancer treatment. Now 25 years since Billy Best entered the public eye, his story is one that is frequently referenced in pediatrics, bioethics, and other related fields. Here, the authors examine the evolution of various features of this case, including treatment of Hodgkin lymphoma, the interplay between medicine and the media, the role of CAM in pediatric care, navigating entrenched disagreements and how best to integrate adolescents into health care decision-making, and the role of narrative in medical practice. The authors explore the unique role of each of these facets of Billy Best's case, describing how each has or has not changed in the quarter century since that time amid the changing landscape of pediatric health care. Ultimately, although many advances have occurred since Billy Best's time, significant work remains. Additional effort will be required in the future to optimize communication, improve treatment toxicities from Hodgkin lymphoma without decreasing survival, integrate the voice and perspective of adolescents into their treatment decisions, and navigate the roles of CAM and the media in pediatric health care.

Respeto por la autonomía individual y el beneficio colectivo: argumentación a favor de la vacunación obligatoria contra el SARS-CoV-2 para el personal de la salud / Respect for individual autonomy and a collective benefit: Arguments in favor of compulsory SARS-CoV-2 vaccination among health care professionals

Con la llegada de las vacunas contra el SARS-CoV-2, un nuevo aspecto a tener en cuenta en la pandemia es el rechazo a la vacunación. Como la recepción de la vacuna, es voluntaria, se plantea cómo abordar la situación de los miembros del equipo de salud que la rechazan. Se exponen argumentos bioéticos de diversas corrientes: el deontologismo kantiano y lo conceptos de universalidad, humanidad y autonomía; el utilitarismo de Mill, con la autoprotección como único fin por el cual la humanidad está habilitada para interferir con la libertad de acción de sus miembros; el principismo de Beauchamp y Childress y los conceptos de beneficencia y autonomía; el principio de oportunidad de Varo Baena; y el principio de solidaridad, derivado de la ética de los derechos humanos. Se incluyen aportes de filósofos contemporáneos como Roberto Espósito, Jean-Luc Nancy y Alberto Giubilini. Se exponen dos contrargumentos: el de no maleficencia y el de contraproducencia. Por último, se plantea que, dado que el bien común (la salud pública, en este caso) es el determinante íntimo y último de la libertad individual e igual para todos, está por encima del beneficio individual

With the development of SARS-CoV-2 vaccines, a new aspect to be taken into consideration in the midst of the pandemic is vaccine refusal. Since vaccination is voluntary, it is necessary to deal with the fact that some health care team members refuse to receive it. Here I put forward different bioethical arguments: Kantian deontology and the principles of universalizability, humanity, and autonomy; Mill's utilitarianism, with self-protection as the sole end for which humankind is authorized to interfere with its members' freedom of action; Beauchamp and Childress' principlism and the concepts of beneficence and autonomy; Varo Baena's principle of opportunity; and the principle of solidarity resulting from the ethics of human rights. The contributions of contemporary philosophers like Roberto Espósito, Jean-Luc Nancy, and Alberto Giubilini are also included. Two counter-arguments are presented: nonmaleficence and counter-production. Lastly, I suggest that, since common good (in this case, public health) is the intimate and final determining factor of individual freedom and is the same for all, it is above any individual benefit.

Respect for individual autonomy and a collective benefit: Arguments in favor of compulsory SARS-CoV-2 vaccination among health care professionals. / Respeto por la autonomía individual y el beneficio colectivo: argumentación a favor de la vacunación obligatoria contra el SARS-CoV-2 para el personal de la salud.

With the development of SARS-CoV-2 vaccines, a new aspect to be taken into consideration in the midst of the pandemic is vaccine refusal. Since vaccination is voluntary, it is necessary to deal with the fact that some health care team members refuse to receive it. Here I put forward different bioethical arguments: Kantian deontology and the principles of universalizability, humanity, and autonomy; Mill's utilitarianism, with selfprotection as the sole end for which humankind is authorized to interfere with its members' freedom of action; Beauchamp and Childress' principlism and the concepts of beneficence and autonomy; Varo Baena's principle of opportunity; and the principle of solidarity resulting from the ethics of human rights. The contributions of contemporary philosophers like Roberto Espósito, Jean-Luc Nancy, and Alberto Giubilini are also included. Two counterarguments are presented: nonmaleficence and counter-production. Lastly, I suggest that, since common good (in this case, public health) is the intimate and final determining factor of individual freedom and is the same for all, it is above any individual benefit.

Con la llegada de las vacunas contra el SARSCoV- 2, un nuevo aspecto a tener en cuenta en la pandemia es el rechazo a la vacunación. Como la recepción de la vacuna, es voluntaria, se plantea cómo abordar la situación de los miembros del equipo de salud que la rechazan. Se exponen argumentos bioéticos de diversas corrientes: el deontologismo kantiano y lo conceptos de universalidad, humanidad y autonomía; el utilitarismo de Mill, con la autoprotección como único fin por el cual la humanidad está habilitada para interferir con la libertad de acción de sus miembros; el principismo de Beauchamp y Childress y los conceptos de beneficencia y autonomía; el principio de oportunidad de Varo Baena; y el principio de solidaridad, derivado de la ética de los derechos humanos. Se incluyen aportes de filósofos contemporáneos como Roberto Espósito, Jean-Luc Nancy y Alberto Giubilini. Se exponen dos contrargumentos: el de no maleficencia y el de contraproducencia. Por último, se plantea que, dado que el bien común (la salud pública, en este caso) es el determinante íntimo y último de la libertad individual e igual para todos, está por encima del beneficio individual.

Relational, Emotional, and Pragmatic Attributes of Ethics Consultations at a Children's Hospital.

BACKGROUND: Pediatric ethics consultations are important but understudied, with little known about consultations' contextual attributes, which may influence how ethically problematic situations are perceived and addressed. METHODS: We analyzed data regarding 245 pediatric clinical ethics consultations performed between 2013 and 2018 at a large children's hospital. Prespecified data elements included 17 core problematic issues that initiate consultations, 9 ethical considerations identified by the consultation service, and 7 relational, emotional, and pragmatic contextual attributes of the consultation. The main process measure was the cumulative consultation process, ranging from one-on-one discussions with the requestor, to meeting with the clinical team, separate meetings with the patient or family and the clinical team, or combined meeting with the patient or family and the clinical team. RESULTS: The most-prevalent core problematic issues were intensity or limitation of treatment (38.8%) and treatment adherence and refusal (31%). Common pertinent ethical considerations were best interest (79.2%), benefits versus harms of treatment (51%), and autonomy and decision-making (46.5%). A total of 39.2% of consults culminated with a meeting with the clinical team, 9.4% with separate meetings, and 8.2% with a meeting with all parties. Common contextual attributes were discord (43.3%), acknowledged dilemma (33.5%), and articulate disagreement (29.8%). In exploratory analyses, specific contextual attributes were associated with the core problematic issue that initiated the consultation and with how the consultative process culminated. CONCLUSIONS: Pediatric ethics consultations have contextual attributes that in exploratory analyses are associated with specific types of problems and, to a lesser degree, with the cumulative ethics consultation process.

The ethics of refusing to care for patients during the coronavirus pandemic: A Chinese perspective.

As a result of the coronavirus (COVID-19) pandemic, health professionals are faced with situations they have not previously encountered and are being forced to make difficult ethical decisions. As the first group to experience challenges of caring for patients with coronavirus, Chinese nurses endure heartbreak and face stressful moral dilemmas. In this opinion piece, we examine three related critical questions: Whether society has the right to require health professionals to risk their lives caring for patients; whether health professionals have the right to refuse to care for patients during the coronavirus pandemic; and what obligations there are to protect health professionals? Value of care, community expectations, legal obligations, professional and codes of practice may compel health professionals to put themselves at risks in emergency situations. The bioethical principles of autonomy, justice, beneficence and non-maleficence, as well as public health ethics, guide nurses to justify their decisions as to whether they are entitled to refuse to treat COVID-19 patients during the pandemic. We hope that the open discussion would support the international society in addressing similar ethical challenges in their respective situations during this public health crisis.

Ethical Issues Raised by the Media Portrayal of Adolescent Transplant Refusals.

Cases of adolescents in organ failure who refuse solid organ transplant are not common, but several have been discussed in the media in the United States and the United Kingdom. Using the framework developed by Buchanan and Brock for surrogate decision-making, I examine what role the adolescent should morally play when deciding about therapy for life-threatening conditions. I argue that the greater the efficacy of treatment, the less voice the adolescent (and the parent) should have. I then consider how refusals of highly effective transplant cases are similar to and different from refusals of other lifesaving therapies (eg, chemotherapy for leukemia), which is more commonly discussed in the media and medical literature. I examine whether organ scarcity and the need for lifelong immunosuppression justify differences in whether the state intervenes when an adolescent and his or her parents refuse a transplant. I argue that the state, as parens patriae, has an obligation to provide the social supports needed for a successful transplant and follow-up treatment plan, although family refusals may be permissible when the transplant is experimental or of low efficacy because of comorbidities or other factors. I conclude by discussing the need to limit media coverage of pediatric treatment refusals.

The ethics of blood transfusion refusal in clinical practice among legal and medical professions in Japan.

We investigated the differences in Japanese and United States medical and legal professional opinions on ethical support for clinical ethical issues using the refusal of blood transfusions on the grounds of religious principles as an example of a clinical ethical issue. In ethical support systems for medical institutions in Japan, 95.0% of "clinical training designation hospitals" have hospital ethics committees, and 63.1% have medical safety divisions; clinical ethical support is provided in accordance with their scale and function. In terms of clinical ethical support limits the discretion of physicians, 59.2% of lawyers responded "No" and 54.4% of doctors responded "Yes". In addition, on the feasibility of government or academic guidelines in clinical practice, 37.7% of lawyers responded "Yes" and 63.0% of doctors responded "No". In terms of "relative transfusion-free" policy, 83.2% of lawyers and 76.8% of doctors responded that it is "unavoidable," while 81.6% of U.S. committee heads responded that it is a "violation of rights." In terms of hospital transfers due to a hospital being unable to treat patients refusing blood transfusion, 62.6% of lawyers reported that it is "unavoidable" while 57.1% of U.S. committee heads reported that it "should be avoided". The results of this study indicate that medical and legal professionals and U.S. ethics committee heads recognize clinical ethical issues in slightly different ways.

A review of the use of biological mesh products in modern UK surgical practice: a religious and cultural perspective.

INTRODUCTION: The UK is an increasingly multicultural society. This change coincides with an increasing use of animal products in medicine and surgery and a change in the UK law of consent. The refusal of Jehovah's Witnesses to accept blood products is well known, but the use of animal products in surgery is a neglected topic. As society becomes more diverse and medicine becomes ever more advanced, there is increasing potential for a mismatch between what is medically possible and what is acceptable from a religious perspective. METHODS: Surgical products were identified by searching the literature and contacting manufacturing companies. Literature was identified by using PubMed and OVID (MEDLINE). Religious views were established by contacting national bodies for each group. FINDINGS: The views of common UK religious groups and the constituent parts of biological meshes are summarised in tables intended to be used as a reference during clinical practice. On an elective basis, the Islamic, Hindu. Sikh and Jain leaders contacted had strong views on avoiding animal derived products. The Christian and Jewish leaders contacted did not. All religious leaders contacted accepted the use of mesh derived from human tissue. All products, including those of porcine and bovine origin, were acceptable to all leaders contacted if the procedure was performed to save life. The highlighting of this issue should prompt earlier consideration and discussion in the surgical planning and the consenting process with all final decisions taken by both the surgeon and the individual patient.

Parents Demand and Teenager Refuses Epidural Anesthesia.

A 15-year-old girl is scheduled to undergo an upper lobectomy to debulk metastatic Ewing sarcoma. The anesthesiologist recommended placement of a thoracic epidural catheter to provide postoperative analgesia. The patient did not want a needle to be placed near her spine. She was terrified that the procedure would be painful and that it might paralyze her. Although the anesthesiologist reassured her that sedation and local anesthesia would make the procedure comfortable, she remained vehemently opposed to the epidural procedure. The parents spoke privately to the anesthesiologist and asked for placement of the epidural after she was asleep. They firmly believed that this would provide optimal postoperative analgesia and thus would be in her best interest. Experts discuss the pros and cons of siding with the patient or parents.