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.

Management of the Jehovah's Witness in Obstetrics and Gynecology: A Comprehensive Medical, Ethical, and Legal Approach.

IMPORTANCE: Obstetricians and gynecologists frequently deal with hemorrhage so they should be familiar with management of patients who refuse blood transfusion. Although there are some reports in the literature about management of Jehovah's Witness patients in obstetrics and gynecology, most of them are case reports, and a comprehensive review about these patients including ethicolegal perspective is lacking. OBJECTIVE: This review outlines the medical, ethical, and legal implications of management of Jehovah's Witness patients in obstetrical and gynecological settings. EVIDENCE ACQUISITION: A search of published literature using PubMed, Ovid Medline, EMBASE, and Cochrane databases was conducted about physiology of oxygen delivery and response to tissue hypoxia, mortality rates at certain hemoglobin levels, medical management options for anemic patients who refuse blood transfusion, and ethical/legal considerations in Jehovah's Witness patients. RESULTS: Early diagnosis of anemia and immediate initiation of therapy are essential in patients who refuse blood transfusion. Medical management options include iron supplementation and erythropoietin. There are also some promising therapies that are in development such as antihepcidin antibodies and hemoglobin-based oxygen carriers. Options to decrease blood loss include antifibrinolytics, desmopressin, recombinant factor VII, and factor concentrates. When surgery is the only option, every effort should be made to pursue minimally invasive approaches. CONCLUSION AND RELEVANCE: All obstetricians and gynecologists should be familiar with alternatives and "less invasive" options for patients who refuse blood transfusions.

Caso: negativa de los padres al tratamiento en un menor de edad. Nutrición enteral a una paciente con déficit neurológico severo / Case: parental refusal to treatment in a minor enteral nutrition to a patient with severe neurologial deficit

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Ethical challenges when intensive care unit patients refuse nursing care: A narrative approach.

BACKGROUND: Less sedated and more awake patients in the intensive care unit may cause ethical challenges. RESEARCH OBJECTIVES: The purpose of this study is to describe ethical challenges registered nurses experience when patients refuse care and treatment. RESEARCH DESIGN: Narrative individual open interviews were conducted, and data were analysed using a phenomenological hermeneutic method developed for researching life experiences. PARTICIPANTS AND RESEARCH CONTEXT: Three intensive care registered nurses from an intensive care unit at a university hospital in Norway were included. ETHICAL CONSIDERATIONS: Norwegian Social Science Data Services approved the study. Permission was obtained from the intensive care unit leader. The participants' informed and voluntary consent was obtained in writing. FINDINGS: Registered nurses experienced ethical challenges in the balance between situations of deciding on behalf of the patient, persuading the patient and letting the patient decide. Ethical challenges were related to patients being harmful to themselves, not keeping up personal hygiene and care or hindering critical treatment. DISCUSSION: It is made apparent how professional ethics may be threatened by more pragmatic arguments. In recent years, registered nurses are faced with increasing ethical challenges to do no harm and maintain dignity. CONCLUSION: Ethically challenging situations are emerging, due to new targets including conscious and aware critical care patients, leaving an altered responsibility on the registered nurses. Reflection is required to adjust the course when personal and professional ideals no longer are in harmony with the reality in the clinical practice. RNs must maintain a strong integrity as authentic human beings to provide holistic nursing care.

[What you can do when dealing with emergencies in the dementia setting]. / Notfälle bei Demenz - was Sie tun können.

Frequent emergencies in patients with dementia include aggressiveness, screaming, day/night reversal, other behavioral disorders, and falls. They are often caused by delirium, especially if there has been a rapid change in the patient's state of health. Hypoactive delirium in particular is difficult to recognize in the dementia setting. Acute somatic diseases bear a different meaning in dementia than in non-dementia patients, and priorities must be given to the impaired cerebral performance. In addition to medical decisions, ethical ones need to be made. Special attention should be paid to the resources of the caregiver network. This article describes both non-pharmacological and pharmacological treatment modalities when dealing with emergencies in dementia patients.

[Psychiatric treatment--legal aspects]. / Rechtliche Aspekte einer Behandlung in der Psychiatrie.

Doctors want to save lives and promote health. But their patients have the right to decide for themselves about what doctors do with them, and they are free to refuse treatment, even if it is unreasonable from a medical perspective. The law acknowledges this freedom even if a patient is incapable of responsible self-determination as a result of (mental) illness. Treatment contrary to the patient's declared intention will be allowed only under specific, narrow circumstances. These requirements must be legally established in a clear and precise manner.

Patients who make terrible therapeutic choices.

The traditional approaches to dental ethics include appeals to principles, duties (deontology), and consequences (utilitarianism). These approaches are often inadequate when faced with the case of a patient who refuses reasonable treatment and does not share the same ethical framework the dentist is using. An approach based on virtue ethics may be helpful in this and other cases. Virtue ethics is a tradition going back to Plato and Aristotle. It depends on forming a holistic character supporting general appropriate behavior. By correctly diagnosing the real issues at stake in a patient's inappropriate oral health choices and working to build effective habits, dentists can sometimes respond to ethical challenges that remain intractable given rule-based methods.

Conflicts between religious or spiritual beliefs and pediatric care: informed refusal, exemptions, and public funding.

Although respect for parents' decision-making authority is an important principle, pediatricians should report suspected cases of medical neglect, and the state should, at times, intervene to require medical treatment of children. Some parents' reasons for refusing medical treatment are based on their religious or spiritual beliefs. In cases in which treatment is likely to prevent death or serious disability or relieve severe pain, children's health and future autonomy should be protected. Because religious exemptions to child abuse and neglect laws do not equally protect all children and may harm some children by causing confusion about the duty to provide medical treatment, these exemptions should be repealed. Furthermore, public health care funds should not cover alternative unproven religious or spiritual healing practices. Such payments may inappropriately legitimize these practices as appropriate medical treatment.

Childhood immunization: when physicians and parents disagree.

Persistent fears about the safety and efficacy of vaccines, and whether immunization programs are still needed, have led a significant minority of parents to refuse vaccination. Are parents within their rights when refusing to consent to vaccination? How ought physicians respond? Focusing on routine childhood immunization, we consider the ethical, legal, and clinical issues raised by 3 aspects of parental vaccine refusal: (1) physician counseling; (2) parental decision-making; and (3) continuing the physician-patient relationship despite disagreement. We also suggest initiatives that could increase confidence in immunization programs.

What more in the name of god? Theologies and theodicies of faith healing.

The recent deaths of two children from parental decisions to rely on faith healing rather than medical treatment raises fundamental questions about the extent and limits of religious liberty in a liberal democratic society. This essay seeks to identify and critically examine three central issues internal to the ethics of religious communities that engage in faith healing regarding children: (1) the various forms of religious and nonreligious justification for faith healing; (2) the moral, institutional, or metaphysical wrong of medical practice from the perspectives of faith-healing communities; (3) the explanation or "theodicy" articulated by the religious community when faith healing does not occur and a child dies. The essay finds that the holding in Prince v. Massachusetts that parents with religious convictions cannot enforce martyrdom on their children presents a guiding principle for medicine and public policy.

A basic decision-making approach to common ethical issues in consultation-liaison psychiatry.

Ethical dilemmas are found throughout the daily work of C-L psychiatrists. Unfortunately, most psychiatrists have no more training in ethics than their nonpsychiatric colleagues. Psychiatric consults spurred by ethical dilemmas can provoke anxiety in psychiatrists and leave anxious colleagues without the clear recommendations they seek. C-L psychiatrists, and probably all psychiatrists, need more training in clinical ethics. C-L psychiatrists do not need to become clinical ethicists, but competence in handling the ethical issues most commonly seen in C-L work is needed. The 2008 ABPN guidelines for specialists in psychosomatic medicine mention specific ethics topics important in C-L work, and ways of attaining competence in these areas have been discussed in the C-L literature. The four cases discussed here illustrate the high level of complexity often seen in situations in which ethical dilemmas arise in C-L psychiatry. Given the sometimes furious pace of hospital work, it can be easy for C-L psychiatrists to be seduced by the idea of the quick, focused consult that simply responds to a simple question with a simple answer. Because cases involving ethical dilemmas often involve multiple stakeholders, each with his or her own set of concerns, a brief consult focused only on the patient often leads to errors of omission. A wider approach, such as that suggested by the Four Topics Method, is needed to successfully negotiate ethical dilemmas. Busy C-L psychiatry services may struggle at first to find the time to do the type of global evaluations discussed here, but increasing familiarity with approaches such as the Four Topics Method should lead to quicker ways of gathering and processing the needed information.

Medicine vs. prayer: the case of Kara Neumann.

Religious beliefs and the use of complementary and alternative medicine can help or hinder health care and the well being of children, who are often unable to make informed decisions for themselves, but instead, depend on their parents or caregivers to make health care decisions for them. Tragically, this can sometimes result in prolonged suffering and death when parents or caregivers refuse treatment due to their own personal beliefs. This two-part article explores the case of Kara Neumann, an 11-year-old girl who died after her parents denied her medical care in lieu of prayer to cure her "spiritual attack," and the role pediatric nurses can play in educating patients and their families.

Best interests. An holistic approach: Part 2(b).

In the last article principles and guidelines were discussed that related to the ways in which nurses have to work with the best interests of their patients in mind. Where a person is ordinarily capable of consenting to or refusing to consent to, a proposed course of treatment or care but has temporarily lost that capacity, there are certain legal guidelines to follow to ensure that the minimum interventions occur until the person regains their capacity to act in their own interests. However, also highlighted was that that certain people have never attained capacity, or do not yet have capacity or have lost capacity on a permanent basis. For these people, there are legal principles that are incorporated in the Mental Capacity Act and these have to be abided by. This article is dedicated to a review of the situation where, sadly, a person has been assessed as not being legally competent to make their own health decisions. However, where a programme of treatment and care has been clinically proposed, the person refuses to co-operate. The situation of enforced treatment and care is a delicate one. Staff have to be aware of the legal principles that apply, with reference to the Mental Capacity Act.