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2.
Pediatrics ; 146(Suppl 1): S33-S41, 2020 08.
Artigo em Inglês | MEDLINE | ID: mdl-32737230

RESUMO

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.


Assuntos
Temas Bioéticos , Meios de Comunicação de Massa/ética , Transplante de Órgãos/ética , Consentimento dos Pais/ética , Recusa do Paciente ao Tratamento/ética , Adolescente , Família , Feminino , Humanos , Consentimento Informado por Menores/ética , Consentimento Informado por Menores/legislação & jurisprudência , Masculino , Transplante de Órgãos/legislação & jurisprudência , Consentimento dos Pais/legislação & jurisprudência , Participação do Paciente , Patient Self-Determination Act , Ética Baseada em Princípios , Recusa do Paciente ao Tratamento/legislação & jurisprudência , Gêmeos Monozigóticos , Reino Unido , Estados Unidos
3.
Ann R Coll Surg Engl ; 102(8): 566-570, 2020 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-32538113

RESUMO

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.


Assuntos
Bioprótese/ética , Religião e Medicina , Telas Cirúrgicas/ética , Recusa do Paciente ao Tratamento/etnologia , Recusa do Paciente ao Tratamento/ética , Animais , Bovinos , Humanos , Hérnia Incisional/cirurgia , Islamismo , Masculino , Pessoa de Meia-Idade , Suínos , Reino Unido
4.
Pediatrics ; 145(6)2020 06.
Artigo em Inglês | MEDLINE | ID: mdl-32398328

RESUMO

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.


Assuntos
Comportamento do Adolescente/ética , Anestesia Epidural/ética , Dor Pós-Operatória/prevenção & controle , Relações Pais-Filho , Relações Médico-Paciente/ética , Recusa do Paciente ao Tratamento/ética , Adolescente , Comportamento do Adolescente/psicologia , Anestesia Epidural/métodos , Anestesia Epidural/psicologia , Neoplasias Ósseas/psicologia , Neoplasias Ósseas/cirurgia , Feminino , Humanos , Dor Pós-Operatória/psicologia , Pais/psicologia , Sarcoma de Ewing/psicologia , Sarcoma de Ewing/cirurgia , Recusa do Paciente ao Tratamento/psicologia
6.
Bioethics ; 34(3): 306-317, 2020 03.
Artigo em Inglês | MEDLINE | ID: mdl-32100330

RESUMO

This paper is an analysis of the limits of family authority to refuse life saving treatment for a family member (in the Chinese medical context). Family consent has long been praised and practiced in many non-Western cultural settings such as China and Japan. In contrast, the controversy of family refusal remains less examined despite its prevalence in low-income and middle-income countries. In this paper, we investigate family refusal in medical emergencies through a combination of legal, empirical and ethical approaches, which is highly relevant to the ongoing discussion about the place of informed consent in non-Western cultures. We first provide an overview of the Chinese legislation concerning informed consent to show the significance of family values in the context of medical decision-making and demonstrate the lack of legal support to override family refusal. Next, we present the findings of a vignette question that investigated how 11,771 medical professionals and 2,944 patients in China responded to the family refusal of emergency treatment for an unconscious patient. In our analysis of these results, we employ ethical reasoning to question the legitimacy of family refusal of life-sustaining emergency treatment for temporarily incompetent patients. Last, we examine some practical obstacles encountered by medical professionals wishing to override family refusal to give context to the discussion.


Assuntos
Tomada de Decisões , Tratamento de Emergência , Família , Valores Sociais/etnologia , Recusa do Paciente ao Tratamento/ética , Recusa do Paciente ao Tratamento/legislação & jurisprudência , China , Humanos , Consentimento Livre e Esclarecido/legislação & jurisprudência , Competência Mental/legislação & jurisprudência
8.
Med Law Rev ; 28(1): 124-154, 2020 Feb 01.
Artigo em Inglês | MEDLINE | ID: mdl-31257451

RESUMO

It has been ten years since the case of Hannah Jones-the 12-year-old girl who was permitted to refuse a potentially life-saving heart transplant. In the past decade, there has been some progress within law and policy in respect of children's participatory rights (UNCRC-Article 12), and a greater understanding of family-centred decision-making. However, the courts still largely maintain their traditional reluctance to find children Gillick competent to refuse medical treatment. In this article, I revisit Hannah's case through the narrative account provided by Hannah and her mother, to ascertain what lessons can be learnt. I use an Ethics of Care framework specially developed for children in mid-childhood, such as Hannah, to argue for more a creative and holistic approach to child decision-making in healthcare. I conclude that using traditional paradigms is untenable in the context of palliative care and at the end of life, and that the law should be able to accommodate greater, and even determinative, participation of children who are facing their own deaths.


Assuntos
Tomada de Decisões , Consentimento Informado por Menores/ética , Consentimento Informado por Menores/legislação & jurisprudência , Competência Mental/legislação & jurisprudência , Doente Terminal , Recusa do Paciente ao Tratamento/ética , Recusa do Paciente ao Tratamento/legislação & jurisprudência , Criança , Feminino , Guias como Assunto , Humanos , Cuidados Paliativos/ética , Pais , Autonomia Pessoal , Assistência Terminal/ética , Reino Unido
9.
J Clin Ethics ; 30(4): 331-337, 2019.
Artigo em Inglês | MEDLINE | ID: mdl-31851624

RESUMO

Situations in which patients lack medical decision-making (MDM) capacity raise ethical challenges, especially when the patients decline care that their surrogate decision makers and/or clinicians agree is indicated. These patients are a vulnerable population and should receive treatment that is the standard of care, in line with their the values of their authentic self, just as any other patient would. But forcing treatment on patients who refuse it, even though they lack capacity, carries medical and psychological risks to the patients and the hospital staff. It is also often impractical to force some treatments, especially in the long term. For example, independent of the ethical "should" question, how would one force hemodialysis for the rest of a patient's life, or force a surgery that requires weeks of post-operative physical therapy? In this article we present a novel algorithm that can help clinicians with ethical and practical decision making, with the goals of achieving the best outcomes for patients and reducing moral distress for their caretakers and clinicians.


Assuntos
Tomada de Decisão Clínica/ética , Tomada de Decisões , Ética Clínica , Recusa do Paciente ao Tratamento , Humanos , Competência Mental , Participação do Paciente , Diálise Renal , Recusa do Paciente ao Tratamento/ética
10.
J Clin Ethics ; 30(4): 376-383, 2019.
Artigo em Inglês | MEDLINE | ID: mdl-31851628

RESUMO

An Asian Indian Hindu family chose no intervention and hospice care for their newborn with hypoplastic right heart syndrome as an ethical option, and the newborn expired after five days. Professional nursing integrates values-based practice and evidence-based care with cultural humility when providing culturally responsive family-centered culture care. Each person's worldview is unique as influenced by culture, language, and religion, among other factors. The Nursing Team sought to understand this family's collective Indian Hindu worldview and end-of-life beliefs, values, and practices, in view of the unique aspects of the situation while the team integrated evidence-based strategies to provide family-centered culture care. Parental care choices conflicted with those of the Nursing Team, and some nurses experienced moral distress and cultural dissonance when negotiating their deeply held cultural and religious views to advocate for the family. The inability to reconcile and integrate a stressful or traumatic experience impacts nurses' well-being and contributes to compassion fatigue. Nurses need to be intentional in accessing interventions that promote coping and healing and moral resilience. Reflection and cultural humility, assessment, and knowledge in context, increase evidence-based culture care and positive outcomes. U.S. society's views on ethical behavior continue to evolve, and some may argue that the law should place more limits on parents' right to choose or to refuse treatment for their infants and children. Moral distress can lead to moral resilience and satisfaction of compassion when nurses provide family-centered culture care with cultural responsiveness and integrate values-based practice with evidence-based care, and aim to first do no harm.


Assuntos
Enfermagem Familiar/ética , Princípios Morais , Recursos Humanos de Enfermagem no Hospital/psicologia , Relações Profissional-Família/ética , Religião , Estresse Psicológico , Recusa do Paciente ao Tratamento/ética , Atitude Frente a Morte/etnologia , Criança , Cultura , Empatia , Hinduísmo , Humanos , Lactente , Recém-Nascido
12.
Dermatol Online J ; 25(8)2019 Aug 15.
Artigo em Inglês | MEDLINE | ID: mdl-31553860

RESUMO

In medical practice, physicians are sometimes faced with patients who reject the gold-standard treatment for a condition. In this hypothetical clinical scenario, we present the case of a patient who refuses Mohs micrographic surgery for management of infiltrative basal cell carcinoma and instead requests off-label therapy with imiquimod. We discuss the treating dermatologist's options in response to this patient's request and the ethical considerations surrounding the case. We conclude that the physician has the right to refuse to provide treatment that deviates from standard clinical practice but that the physician should counsel the patient on all options, provide thorough informed consent, offer contact information for the patient to pursue a second opinion or a radiation oncology referral, and ensure safe transfer of care should the patient desire treatment with a different provider.


Assuntos
Carcinoma Basocelular/terapia , Consentimento Livre e Esclarecido , Recusa do Médico a Tratar/ética , Neoplasias Cutâneas/terapia , Padrão de Cuidado , Recusa do Paciente ao Tratamento/ética , Idoso , Antineoplásicos/uso terapêutico , Carcinoma Basocelular/patologia , Dermatologistas , Feminino , Humanos , Imiquimode/uso terapêutico , Cirurgia de Mohs , Uso Off-Label , Transferência de Pacientes , Encaminhamento e Consulta , Recusa do Médico a Tratar/legislação & jurisprudência , Neoplasias Cutâneas/patologia , Recusa do Paciente ao Tratamento/legislação & jurisprudência
14.
Bioethics ; 33(9): 1042-1049, 2019 11.
Artigo em Inglês | MEDLINE | ID: mdl-31389050

RESUMO

Political communities across the world have recently sought to tackle rising rates of vaccine hesitancy and refusal, by implementing coercive immunization programs, or by making existing immunization programs more coercive. Many academics and advocates of public health have applauded these policy developments, and they have invoked ethical reasons for implementing or strengthening vaccine mandates. Others have criticized these policies on ethical grounds, for undermining liberty, and as symptoms of broader government overreach. But such arguments often obscure or abstract away from the diverse values that are relevant to the ethical justifications of particular political communities' vaccine-mandate policies. We argue for an expansive conception of the normative issues relevant to deciding whether and how to establish or reform vaccine mandates, and we propose a schema by which to organize our thoughts about the ways in which different kinds of vaccine-mandate policies implicate various values.


Assuntos
Surtos de Doenças/prevenção & controle , Programas de Imunização/ética , Programas de Imunização/normas , Recusa do Paciente ao Tratamento/ética , Vacinação/ética , Vacinação/normas , Vacinas/normas , Adulto , Idoso , Idoso de 80 Anos ou mais , Feminino , Política de Saúde , Humanos , Masculino , Pessoa de Meia-Idade , Saúde Pública
16.
Semin Speech Lang ; 40(3): 162-169, 2019 06.
Artigo em Inglês | MEDLINE | ID: mdl-31158901

RESUMO

Speech-language pathologists (SLPs), and really their patients, are often faced with challenging clinical decisions to be made. Patients may decline interventions recommended by the SLP and are often inappropriately labeled "noncompliant." The inappropriateness of this label extends beyond the negative charge; the patient's right to refuse is, in fact, protected by law. Anecdotal exchanges, social media platforms, and American Speech-Language-Hearing Association forums have recently revealed that many SLPs are struggling with the patient's right to decline. Many are not comfortable with the informed consent process and what entails patients' capacity to make their own medical decisions. Here, we discuss the basics of clinical decision-making ethics with intent to minimize the clinician's discomfort with the right to refuse those thickened liquids and eliminate the practice of defensive medicine.


Assuntos
Tomada de Decisão Clínica/ética , Transtornos de Deglutição/psicologia , Consentimento Livre e Esclarecido , Patologia da Fala e Linguagem/ética , Recusa do Paciente ao Tratamento/ética , Tomada de Decisões , Transtornos de Deglutição/diagnóstico , Transtornos de Deglutição/terapia , Humanos
18.
Bioethics ; 33(8): 931-936, 2019 10.
Artigo em Inglês | MEDLINE | ID: mdl-31034100

RESUMO

This article will explore whether the law should allow people with anorexia nervosa to refuse nutrition and hydration with special reference to the English decision in Re E (Medical Treatment: Anorexia). It argues that the judge in that case made the correct decision in holding that the patient, who suffered from severe anorexia nervosa, lacked capacity to make valid advance directives under the Mental Capacity Act 2005 of the United Kingdom, and that medical procedures that are apparently against her wishes should be carried out for the sake of preserving her life. The law should generally not permit patients with anorexia nervosa to decline nutrition and hydration, precisely because their autonomous ability to make such decisions has been substantially circumscribed by this psychiatric condition.


Assuntos
Diretivas Antecipadas/ética , Diretivas Antecipadas/legislação & jurisprudência , Anorexia Nervosa/terapia , Tomada de Decisões/ética , Competência Mental/legislação & jurisprudência , Recusa do Paciente ao Tratamento/ética , Recusa do Paciente ao Tratamento/legislação & jurisprudência , Adulto , Idoso , Idoso de 80 Anos ou mais , Feminino , Humanos , Pessoa de Meia-Idade , Reino Unido
20.
J Hosp Med ; 14(5): 290-293, 2019 05.
Artigo em Inglês | MEDLINE | ID: mdl-30897052

RESUMO

Little is known about the daily ethical conflicts encountered by hospitalists that do not prompt a formal clinical ethics consultation. We describe the frequencies of ethical issues identified during daily rounds on hospitalist teaching services at a metropolitan, tertiary-care, teaching hospital. Data were collected from September 2017 through May 2018 by two attending hospitalists from the ethics committee who were embedded on rounds. A total of 270 patients were evaluated and 113 ethical issues were identified in 77 of those patients. These issues most frequently involved discussions about goals of care, treatment refusals, decision-making capacity, discharge planning, cardiopulmonary resuscitation status, and pain management. Only five formal consults were brought to the Hospital Ethics Committee for these 270 patients. Our data are the first prospective description of ethical issues arising on academic hospitalist teaching services and are an important step in the development of a targeted ethics curriculum for hospitalists.


Assuntos
Médicos Hospitalares/ética , Hospitais de Ensino/ética , Centros de Atenção Terciária , Médicos Hospitalares/estatística & dados numéricos , Hospitais de Ensino/organização & administração , Humanos , Pacientes Internados/estatística & dados numéricos , Tempo de Internação , Competência Mental/legislação & jurisprudência , Pessoa de Meia-Idade , Alta do Paciente/estatística & dados numéricos , Estudos Prospectivos , Recusa do Paciente ao Tratamento/ética
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