Trust is frequently discussed with reference to the professional–patient relationship. However, trust is less explored in relation to the ways in which understanding of, and responses to, questions of ethics are discussed by both the “public” and “experts.” Public engagement activity in healthcare ethics may invoke “trust” in analysing a moral question or problem but less frequently conceives of trust as integral to “public engagement” itself. This paper explores the relationship between trust and the ways in which questions of healthcare (...) ethics are identified and negotiated by both “experts” and the public. Drawing on two examples from the author’s “public engagement” work—a radio programme for the British Broadcasting Corporation and work with a playwright and theatre—the paper interrogates the ways in which “public engagement” is often characterized. The author argues that the common approach to public engagement in questions of ethics is unhelpfully constrained by a systemic disposition which continues to privilege the professional or expert voice at the expense of meaningful exchange and dialogue. By creating space for novel interactions between the “expert” and the “public,” authentic engagement is achieved that enables not only the participants to flourish but also contributes to trust itself. (shrink)

This discussion paper considers how seldom recognised theories influence clinical ethics committees. A companion paper examined four major theories in social science: positivism, interpretivism, critical theory and functionalism, which can encourage legalistic ethics theories or practical living bioethics, which aims for theory–practice congruence. This paper develops the legalistic or living bioethics themes by relating the four theories to clinical ethics committee members’ reported aims and practices and approaches towards efficiency, power, intimidation, justice, equality and children’s interests and rights. Different approaches (...) to framing ethical questions are also considered. Being aware of the four theories’ influence can help when seeking to understand and possibly change clinical ethics committee routines. The paper is not a research report but is informed by a recent study in two London paediatric cardiac units. Forty-five practitioners and related experts were interviewed, including eight members of ethics committees, about the work of informing, preparing and supporting families during the extended process of consent to children’s elective heart surgery. The mosaic of multidisciplinary teamwork is reported in a series of papers about each profession, including this one on bioethics and law and clinical ethics committees’ influence on clinical practice. The qualitative social research was funded by the British Heart Foundation, in order that more may be known about the perioperative views and needs of all concerned. Questions included how disputes can be avoided, how high ethical standards and respectful cooperation between staff and families can be encouraged, and how minors’ consent or refusal may be respected, with the support of clinical ethics committees. (shrink)

The process of seeking the consent of a patient to a medical procedure is, arguably, one of the most important skills a doctor, or indeed any clinician, should learn. In fact, the very idea that doctors may institute diagnostic or treatment processes of any sort without a patient's consent is utterly counter-intuitive to the modern practice of medicine. It was not always thus, and even now it can be reliably assumed that consent is still not sought and gained appropriately in (...) every clinical encounter. To say that it should be sought and gained in this manner elevates the value of consent to a high level. It can be instructive to ask oneself why such a value might be held to be the case. The answer to this question lies in the philosophical underpinning of clinical consent, which sits within a notion of personal autonomy, and respect for autonomous decision making. (shrink)

Background This analysis is about practical living bioethics and how law, ethics and sociology understand and respect children’s consent to, or refusal of, elective heart surgery. Analysis of underlying theories and influences will contrast legalistic bioethics with living bioethics. In-depth philosophical analysis compares social science traditions of positivism, interpretivism, critical theory and functionalism and applies them to bioethics and childhood, to examine how living bioethics may be encouraged or discouraged. Illustrative examples are drawn from research interviews and observations in two (...) London paediatric cardiac units. This paper is one of a series on how the multidisciplinary cardiac team members all contribute to the complex mosaic of care when preparing and supporting families’ informed consent to surgery. Results The living bioethics of justice, care and respect for children and their consent depends on theories and practices, contexts and relationships. These can all be undermined by unseen influences: the history of adult-centric ethics; developmental psychology theories; legal and financial pressures that require consent to be defined as an adult contract; management systems and daily routines in healthcare that can intimidate families and staff; social inequalities. Mainstream theories in the clinical ethics literature markedly differ from the living bioethics in clinical practices. Conclusion We aim to contribute to raising standards of respectful paediatric bioethics and to showing the relevance of virtue and feminist ethics, childhood studies and children’s rights. (shrink)

A Professor of Medical Ethics and a theatre director, also mother and daughter, talk about health, illness, suffering, performance and practice. Using the lenses of ethical and performance theory, they explore what it means to be a patient, a spectator and a practitioner and cover many plays, texts and productions: Samuel Beckett’s Not I and All That Fall, Sarah Kane’s Crave, Tim Crouch’s An Oak Tree, Enda Walsh’s Ballyturk, Annie Ryan’s adaptation of Eimear McBride’s novel A Girl Is a Half-Formed (...) Thing, Duncan MacMillan’s People, Place and Things and Henrik Ibsen’s Hedda Gabler. These were selected because first we have seen, studied or worked with each and they have continued to inspire us. Second, they offer rich and revealing insights into the ways in which meaning is/are both negotiated and contested in relation to health and illness. It is the iterative negotiation of meaning that, it is argued, is the essence of narrative practice, be it in medicine or in the theatre. The difference and divergence of perception, response and interpretation to dramatic performance can test relationships, be they professional, creative or familial. Yet, the capacity to understand, and embrace, disagreement and uncertainty is vital; fundamental to a flourishing life. For it is by recognising our part in creating narratives, broken and otherwise, that we can begin to recognise the necessary interactionism and humanity of both medicine and theatre. (shrink)