En busca del buen morir / In search of a good death

La muerte siempre ha generado desconcierto, por lo que acompañar en este proceso de final de vida conlleva un alto compromiso existencial. Si a esta difícil tarea se le agregan los condicionantes hospitalarios o legales que sufren los enfermos en su agonía, estamos ante una muerte aterradora, muy distante de una partida que pueda ser considerada amorosa. Como sabemos, la palabra "clínica" hace referencia a la práctica de atender al pie de la cama del paciente, aliviando el dolor del que está por partir; sin embargo, el "corsé legal" de la muerte está alejando al médico de aquel que debiera recibir toda su atención y sus cuidados, atándole el brazo para acompañarlo en el buen morir. Deberíamos debatir y acordar una estrategia que enriquezca la experiencia del momento final de la vida, de modo que ese conjunto acotado de pacientes pueda elegir su forma de partir. Es de un valor incalculable despertar la compasión en este tema tan importante que preocupa al ser humano desde los inicios de la civilización. Sería muy fructífero que aprovechemos la transmisión de sabiduría de siglos de antiguas culturas que han sabido cuidar con humildad la vida hasta el instante de morir. (AU)

Death has always implied confusion, so accompanying this end-of-life process entails a highexistential commitment. If we add to this difficult task the hospital or legal constraints suffered bypatients in their agony, we are facing a terrifying death, very far from a departure that can be considered a loving one. As we know, the word "clinical" refers to the practice of caring for the patient very close to the bed, alleviating the pain of whom is about to leave; however, the "legal corset" of death is separating the doctor from the one who should receive all his attention and care, preventing him from accompanying the pacient in his/her good dying. We should discuss and agree on a strategy that enriches the experience of the end of life, so that patients could choose the way to leave. It is of incalculable value to awaken compassion on this important issue that has concerned human since the beggining of civilization. It would be very fruitful if we take advantage of the enormous wisdom of ancient cultures that have humbly cared for life until the moment of death. (AU)

Family Involvement in the End-of-Life Decision-Making Process: Legal and Bioethical Analysis of Empirical Findings.

End-of-life decision making involves clinicians, patients, and relatives; yet, the law in Israel hardly recognises the role of relatives. This raises the question of the law's impact in practice and, hence, whether it should be amended. This issue is examined on the basis of findings from a qualitative, interview-based study conducted in Israel among relatives of dying patients. The findings indicate that there are areas in which clinicians and relatives do not adhere to the law in the end-of-life decision-making process. For example, they do not always ascertain the patient's end-of-life preferences, which ignores a patient's right to autonomy and their right to make informed decisions. The apparent gaps between the actual conduct of clinicians and relatives on the one hand and the directives of the Israeli Dying Patient Act 2005 on the other, lead us to propose several changes to the Act.

Aspectos éticos y legales ante la conspiración de silencio según los profesionales sanitarios / Ethical and legal aspects in the conspiracy of silence according to health professionals

OBJETIVOS: Conocer los discursos de los profesionales sanitarios sobre el marco normativo ético y legal en el contexto del pacto de silencio, como origen del fenómeno y sus consecuencias: participación en la toma de decisiones, obstinación terapéutica, limitación o adecuación del esfuerzo terapéutico y sedación paliativa. Estudio cualitativo descriptivo, enfoque fenomenológico. EMPLAZAMIENTO Y PARTICIPANTES: profesionales de enfermería y medicina de atención primaria, hospital y urgencias de Sevilla. MÉTODO: Entrevistas semiestructuradas. Áreas exploradas: comunicación inicial sobre diagnóstico, pronóstico y situación de últimos días, opinión sobre el pacto de silencio, consecuencias en el afrontamiento de la muerte y la participación en la toma de decisiones. Análisis de contenido interpretativo. RESULTADOS: Información a la familia de forma preferente, la mayoría desconocen los principios éticos al final de la vida, se confunde intimidad, autonomía y confidencialidad, si la conspiración de silencio está presente la mantienen. La autonomía está anulada, se aplica la beneficencia y la no maleficencia desde el punto de vista del profesional, se cita falta de justicia respecto a la comunicación e información según razones sociales. La participación del paciente en toma de decisiones imposible en este contexto; se sobreactúa para evitar la muerte cayendo en la obstinación terapéutica. No se suele practicar la adecuación del esfuerzo terapéutico y el rechazo del tratamiento es imposible. Aparece la eutanasia como categoría emergente, se confunde con la sedación paliativa. CONCLUSIONES: Desconocimiento del marco normativo ético y legal al final de la vida como causa del pacto de silencio, teniendo como consecuencias la falta de participación en la toma de decisiones, obstinación terapéutica y no aplicación de limitación del esfuerzo terapéutico

OBJETIVE: to collect the discourses of health professionals about the ethical and legal regulatory framework in the context of the pact of silence as origin of the phenomenon, and its consequences: participation in decision making, therapeutic obstinacy, limitation or adjustment of therapeutic efforts, and palliative sedation. A qualitative, descriptive study using a phenomenological approach. PLACE AND PARTICIPANTS: nurses and physicians in primary care, palliative care, hospital care, and emergency care in Seville. METHODS: Semi-structured interviews. Explored areas: breaking bad news regarding diagnosis, prognosis, and end of life; opinions about the conspiracy of silence, consequences for coping with death, and participation in decision making. Interpretive content analysis. RESULTS: Families are preferentially informed; most are unaware of ethical principles at the end of life; intimacy, autonomy, and confidentiality are mixed up terms; when present, the conspiracy of silence is maintained. Autonomy is overridden, beneficence and nonmaleficence are applied from the professional's perspective, lack of justice is mentioned regarding communication and information according to social reasons. Patient participation in decision making is impossible in this setting; overreacting occurs to avoid death, leading to therapeutic obstinacy. Therapeutic effort adjustment is not practiced and treatment refusal is impossible. Euthanasia appears as an emergent category, and is confused with palliative sedation. CONCLUSION: Ignorance of the ethical and legal regulatory framework for end-of-life care, as a cause of the pact of silence. Consequences include absence of patient participation in decision making, therapeutic obstinacy, and failure to implement therapeutic effort limitations

Federal Right to Try: Where Is It Going?

Policy-makers, bioethicists, and patient advocates have been engaged in a fierce battle about the merits and potential harms of a federal right-to-try law. This debate about access to investigational medical products has raised profound questions about the limits of patient autonomy, appropriate government regulation, medical paternalism, and political rhetoric. For example, do patients have a right to access investigational therapies, as the right-to-try movement asserts? What is government's proper role in regulating and facilitating access to drugs that are still in development? In this review, we analyze the history of the right-to-try movement, review the arguments put forth by supporters and opponents of the legislation, and consider the movement's consequences. Two possible scenarios may emerge. One is that the right-to-try pathway may fail to meaningfully increase patient access to investigational products. Alternatively, certain companies may attempt to rely on the federal right-to-try legislation to sell investigational products, taking advantage of the provision that allows for direct costs, as there is currently no clear mechanism for enforcement or monitoring of cost calculations.

Canadian neurosurgeons' views on medical assistance in dying (MAID): a cross-sectional survey of Canadian Neurosurgical Society (CNSS) members.

BACKGROUND: The Supreme Court of Canada removed the prohibition on physicians assisting in patients dying on 6 February 2015. Bill C-14, legalising medical assistance in dying (MAID) in Canada, was subsequently passed by the House of Commons and the Senate on 17 June 2016. As this remains a divisive issue for physicians, the Canadian Neurosurgical Society (CNSS) has recently published a position statement on MAID. METHODS: We conducted a cross-sectional survey to understand the views and perceptions among CNSS members regarding MAID to inform its position statement on the issue. Data was collected from May to June 2016. RESULTS: Of the 300 active membes of the CNSS who recevied the survey, 89 respondents completed the survey, 71% of whom were attending neurosurgeons and 29% were neurosurgery residents. Most respondents,74.2%, supported the right of physicians to participate in MAID with 7.8% opposing. 37% had current patients in their practice fitting the criteria for MAID. 23.6% had been asked by patients to assist with MAID, but only 11% would consider personally providing it. 84% of neurosurgeons surveyed supported the physicians' right to conscientious objection to MAID while 21% thought attending surgeons should be removed from the inquiry and decision-making process. 43.8% agreed that the requirment to refer a patient to a MAID service should be mandatory. Glioblastoma multiforme (65%), quadriplegia/quadriparesis secondary to spinal tumour/trauma (54%) and Parkinson's disease (24%) were the most common suggested potential indications for MAID among the neurosurgical population. CONCLUSIONS: Our results demonstrate that most neurosurgeons in Canada are generally supportive of MAID in select patients. However, they also strongly support the physicians' right to conscientious objection.

Assessment of decision-making capacity in patients requesting assisted suicide.

In this editorial, we argue that current attitudes toward terminally ill patients are generally too paternalistic, and that it is wrong to assume that patients suffering from mental health issues (including depression) cannot consent to assisted suicide.Declaration of interestNone.