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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(s) is/are both negotiated and contested in relation to health and illness. It is the iterative negotiation of meaning(s) 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.

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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]