RESUMO
During pandemics, healthcare providers struggle with balancing obligations to self, family, and patients. While HIV/AIDS seemed to settle this issue, coronavirus disease 2019 (COVID-19) rekindled debates regarding treatment refusal. We searched MEDLINE, Embase, CINAHL Complete, and Web of Science using terms including obligation, refusal, HIV/AIDS, COVID-19, and pandemics. After duplicate removal and dual, independent screening, we analyzed 156 articles for quality, ethical position, reasons, and concepts. Diseases in our sample included HIV/AIDS (72.2%), severe acute respiratory syndrome (SARS) (10.2%), COVID-19 (10.2%), Ebola (7.0%), and influenza (7.0%). Most articles (81.9%, n = 128) indicated an obligation to treat. COVID-19 had the highest number of papers indicating ethical acceptability of refusal (60%, P < .001), while HIV had the least (13.3%, P = .026). Several reason domains were significantly different during COVID-19, including unreasonable risks to self/family (26.7%, P < .001) and labor rights/workers' protection (40%, P < .001). A surge in ethics literature during COVID-19 has advocated for permissibility of treatment refusal. Balancing healthcare provision with workforce protection is crucial in effectively responding to a global pandemic.
Assuntos
COVID-19 , SARS-CoV-2 , Humanos , COVID-19/epidemiologia , Pessoal de Saúde/ética , Infecções por HIV/tratamento farmacológico , Pandemias , Recusa do Paciente ao Tratamento/ética , Obrigações MoraisRESUMO
BACKGROUND: Obstetricians often times find themselves in a conflict of right and duty with their patients, when these patients refuse recommended treatment. On the one hand, the obstetrician, aiming to fulfil the duty of care, recommends a treatment in the best interest of the woman. The woman, on the other hand, exercising her right of self-determination and autonomy, declines the recommended treatment. MATERIALS AND METHODS: A search was conducted for literature, articles and case reports on the subject on PubMed/MEDLINE and Google Scholar using the keywords: medical ethics, medical law, obstetric mortality, maternal medicine, foetal medicine, patient autonomy, informed consent, right to life and right to liberty. RESULTS: Opinions have historically differed on whether maternal or foetal rights should be deferred to in situations where pregnant women refuse obstetric interventions. So also have legal decisions on the issue. The general consensus is, however, to respect a woman's refusal of recommended medical treatment, in deference to her right of self-determination and autonomy. The obstetric outcomes in such instances are however, often times, unfavourable. CONCLUSION: The ethics of patient care in the face of conflicting rights deserves renewed examination and discourse.
Assuntos
Autonomia Pessoal , Humanos , Feminino , Gravidez , Direitos do Paciente/ética , Recusa do Paciente ao Tratamento/ética , Consentimento Livre e Esclarecido/ética , Obstetrícia/ética , Ética MédicaRESUMO
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.
Assuntos
Transfusão de Sangue , Transtornos do Desenvolvimento Sexual , Testemunhas de Jeová , Pais , Autonomia Pessoal , Humanos , Transfusão de Sangue/ética , Masculino , Feminino , Transtornos do Desenvolvimento Sexual/cirurgia , Recusa do Paciente ao Tratamento/ética , Cirurgia de Readequação Sexual/ética , Lactente , Criança , Religião e Medicina , Tomada de Decisões/ética , Consentimento dos Pais/éticaRESUMO
Children commonly refuse induction of anesthesia. Anesthesia providers must then decide whether to honor the child's dissent or to proceed over objection. In some circumstances, a forced induction involves restraining the child, incurring both practical and ethical harms to the patient-provider encounter. This educational review explores the practical dilemma encountered when a child dissents to induction of anesthesia. In the course of exploring this dilemma, dissent and associated terms are defined and compared, and the prominent ethical underpinnings regarding pediatric decision-making are described to clarify dissent as an ethical and practical concept. Important legal and professional standards are summarized, and practice trends are discussed to depict the current state of practice, including novel approaches to honoring pediatric dissent for elective surgeries. This information is then used to invite providers to consider where they ethically situate themselves within a legally and professionally defined space of acceptable practice. Finally, these considerations are synthesized to discuss important nuances regarding pediatric refusal, and some key questions are presented for clinicians to ponder as they consider their practice of choosing whether to honor pediatric dissent at induction.
Assuntos
Anestesia , Recusa do Paciente ao Tratamento , Humanos , Anestesia/ética , Recusa do Paciente ao Tratamento/ética , Criança , Pediatria/ética , Tomada de Decisões/ética , Anestesiologia/ética , Anestesiologia/educaçãoRESUMO
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.
Assuntos
Tentativa de Suicídio , Recusa do Paciente ao Tratamento , Humanos , Recusa do Paciente ao Tratamento/éticaRESUMO
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.
Assuntos
COVID-19/prevenção & controle , Recusa do Paciente ao Tratamento/ética , COVID-19/transmissão , China , Humanos , Pandemias/prevenção & controle , Pandemias/estatística & dados numéricos , Saúde Pública/instrumentação , Saúde Pública/métodos , Recusa do Paciente ao Tratamento/tendênciasRESUMO
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 & jurisprudênciaRESUMO
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 UnidoAssuntos
Transfusão de Sangue , Recusa do Paciente ao Tratamento , Feminino , Humanos , Gravidez , Recusa do Paciente ao Tratamento/ética , Recusa do Paciente ao Tratamento/legislação & jurisprudência , Transfusão de Sangue/ética , Transfusão de Sangue/legislação & jurisprudência , Tomada de DecisõesRESUMO
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 PúblicaRESUMO
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 UnidoRESUMO
In everyday clinical practice, health professionals and parents of chronically ill children often rely on the principle of 'best interest' in the development of medically oriented treatment plans. In most cases, such processes are done collaboratively; however, 'best interest' as a standard for decision-making becomes ambiguous in situations wherein parents and health professionals fail to agree on the course of treatment. This paper will explore the potential tensions that can exist in clinical practice when 'best interest' is used for making health care decisions. The discussion will be framed within the case of baby M, a newborn child of Mennonite descent diagnosed at birth with end-stage kidney disease (ESKD). M's parents refused medically-prescribed therapy on behalf of their child because of the uncertainty of the treatment and beliefs regarding quality of life. This case highlights that the application of the 'best interest' principle in the clinical domain can be ambiguously interpreted and subjectively operationalized along a narrowly defined medical understanding of what is in the patient's best interest. In addition, this case serves as an example of how power within the health care system can be used to operationalize a medically-sanctioned definition of 'best interest', often at the expense of the values, beliefs and interests of parental caregivers.
Assuntos
Tomada de Decisões/ética , Falência Renal Crônica/terapia , Pais/psicologia , Recusa do Paciente ao Tratamento/ética , Amish , Criança , Evolução Fatal , Feminino , Humanos , Qualidade de VidaRESUMO
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 , HumanosRESUMO
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/éticaRESUMO
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 Hospitalar/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-NascidoRESUMO
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 em 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 em Tratar/legislação & jurisprudência , Neoplasias Cutâneas/patologia , Recusa do Paciente ao Tratamento/legislação & jurisprudênciaRESUMO
The aim of this paper is to analyze an Intensive Care Unit case that required ethics consultation at a University Hospital in Northern Italy. After the case was resolved, a retrospective ethical analysis was performed by four clinical ethicists who work in different healthcare contexts (Italy, the United States, and Switzerland). Each ethicist used a different method to analyze the case; the four general approaches provide insight into how these ethicists conduct ethics consultations at their respective hospitals. Concluding remarks examine the similarities and differences among the various approaches and offer a reflection concerning the possibility of a shared resolution to the case. The authors' efforts to come to a tentative consensus may serve as an example for professionals working in medical contexts that reflect an increasing pluralism of values. This article aims to respond to some of these concerns by illustrating how different methods in clinical ethics would be used when considering a real case. The goal is not to establish the best model (if there is one) on a theoretical level, but to learn from actual practice in order to see if there are common elements in the different methods, and to validate their pertinence to clinical ethics consultation.
Assuntos
Tomada de Decisões , Consultoria Ética , Unidades de Terapia Intensiva/ética , Doença Aguda/terapia , Vértebras Cervicais/lesões , Traumatismos Craniocerebrais/terapia , Diversidade Cultural , Família , Fraturas Ósseas/terapia , Humanos , Masculino , Futilidade Médica/ética , Pessoa de Meia-Idade , Princípios Morais , Preferência do Paciente , Qualidade de Vida , Ressuscitação/ética , Traumatismos da Medula Espinal/terapia , Recusa do Paciente ao Tratamento/éticaAssuntos
Endocardite/complicações , Competência Mental , Transtornos Relacionados ao Uso de Opioides/complicações , Recusa do Paciente ao Tratamento/ética , Feminino , Humanos , Transtornos Relacionados ao Uso de Opioides/psicologia , Cuidados Paliativos/ética , Participação do Paciente , Recusa do Paciente ao Tratamento/psicologiaRESUMO
Calls to legalize physician-assisted suicide have increased and public interest in the subject has grown in recent years despite ethical prohibitions. Many people have concerns about how they will die and the emphasis by medicine and society on intervention and cure has sometimes come at the expense of good end-of-life care. Some have advocated strongly, on the basis of autonomy, that physician-assisted suicide should be a legal option at the end of life. As a proponent of patient-centered care, the American College of Physicians (ACP) is attentive to all voices, including those who speak of the desire to control when and how life will end. However, the ACP believes that the ethical arguments against legalizing physician-assisted suicide remain the most compelling. On the basis of substantive ethics, clinical practice, policy, and other concerns articulated in this position paper, the ACP does not support legalization of physician-assisted suicide. It is problematic given the nature of the patient-physician relationship, affects trust in the relationship and in the profession, and fundamentally alters the medical profession's role in society. Furthermore, the principles at stake in this debate also underlie medicine's responsibilities regarding other issues and the physician's duties to provide care based on clinical judgment, evidence, and ethics. Society's focus at the end of life should be on efforts to address suffering and the needs of patients and families, including improving access to effective hospice and palliative care. The ACP remains committed to improving care for patients throughout and at the end of life.