The opinion of Mr. Justice Francis of the English High Court which denied the parents of Charlie Gard, who had been born with an extremely rare mutation of a genetic disease, the right to take their child to the United States for a proposed experimental treatment occasioned world wide attention including that of the Pope, President Trump, and the US Congress. The case raise anew a debate as old as the foundation of Western medicine on who should decide and on (...) what standard when there is a conflict between a family and the treating physicians over a possible treatment. This paper will explore the different approaches of the British and American courts on the issue and the various proposals from that of John Rawls in his A Theory of Justice to a processed-based approach for resolving such disputes. As carefully crafted as the opinion of Mr Justice Nicholas Francis in the Gard case proved to be, it left commentators unsatisfied. A widespread criticism, captured in an article by Michael Dougherty in The National Review was for the state to ‘get out of the way of the parents trying to act in the best interests of the child’.1 Although he conceded the parents could be adding to the suffering of the child by taking Charlie to America for an experimental therapy and agreed that such a choice ‘may be the wrong decision,’ in Dougherty’s view, it should still be ‘their decision’. Dougherty’s stand was the popular response to the question of ‘Who should decide?’ It fails, however, to propose any rationale for the decision. It provided no norms, no standards and no guidelines for the parents. Their motive could equally well be indifference to the suffering of the child as concern for his well-being. Furthermore, even good, loving parents may make …. (shrink)

:Empirical work has shown that patients and physicians have markedly divergent understandings of treatability statements in the context of serious illness. Patients often understand treatability statements as conveying good news for prognosis and quality of life. In contrast, physicians often do not intend treatability statements to convey improvement in prognosis or quality of life, but merely that a treatment is available. Similarly, patients often understand treatability statements as conveying encouragement to hope and pursue further treatment, though this may not be (...) intended by physicians. This radical divergence in understandings may lead to severe miscommunication. This paper seeks to better understand this divergence through linguistic theory—in particular, H.P. Grice’s notion of conversational implicature. This theoretical approach reveals three levels of meaning of treatability statements: the literal meaning, the physician’s intended meaning, and the patient’s received meaning. The divergence between the physician’s intended meaning and the patient’s received meaning can be understood to arise from the lack of shared experience between physicians and patients, and the differing assumptions that each party makes about conversations. This divergence in meaning raises new and largely unidentified challenges to informed consent and shared decision making in the context of serious illness, which indicates a need for further empirical research in this area. (shrink)

Some patients who are dependent on extracorporeal membrane oxygenation (ECMO) are alert and retain capacity to participate in decision-making, including decisions regarding whether to continue life...

In their target article, Nielsen Busch and Mjaaland (2023) address a longstanding debate within the bioethics and organ transplantation community regarding whether controlled donation after circula...

In their target article, Millum and Bromwich situate their article against a backdrop of well-documented empirical research demonstrating that many participants have variable and often poor...

ObjectivesThe end of life is an ethically challenging time requiring complex decision-making. This study describes ethical frameworks among physician trainees, explores how these frameworks manifest and relates these frameworks to experiences delivering end-of-life care.DesignWe conducted semistructured in-depth exploratory qualitative interviews with physician trainees about experiences of end-of-life care and moral distress. We analysed the interviews using thematic analysis.SettingAcademic teaching hospitals in the United States and United Kingdom.ParticipantsWe interviewed 30 physician trainees. We purposefully sampled across three domains we expected to be (...) associated with individual ethics in order to elicit a diversity of ethical and experiential perspectives.ResultsSome trainees subscribed to a best interest ethical framework, characterised by offering recommendations consistent with the patient’s goals and values, presenting only medically appropriate choices and supporting shared decision-making between the patient/family and medical team. Others endorsed an autonomy framework, characterised by presenting all technologically feasible choices, refraining from offering recommendations and prioritising the voice of patient/family as the decision-maker.ConclusionsThis study describes how physician trainees conceptualise their roles as being rooted in an autonomy or best interest framework. Physician trainees have limited clinical experience and decision-making autonomy and may have ethical frameworks that are dynamic and potentially highly influenced by experiences providing end-of-life care. A better understanding of how individual physicians’ ethical frameworks influences the care they give provides opportunities to improve patient communication and advance the role of shared decision-making to ensure goal-aligned end-of-life care. (shrink)

Perhaps the central focus of American bioethics has been to push against medical paternalism on the grounds that it impedes the autonomy of patients—that is, their ability to make choices of their...