Family bereavement: A case study of controlled organ donation after circulatory death

Deceased organ donation represents a major source of organs for human transplantation practice. In the United Kingdom as well as other parts of the world, donation after circulatory death accounts for a proportion of all deceased organ donors. Organ and tissue donation emotively takes place in the context of dying, death and bereavement, yet little is known about the family experience of donation after circulatory death. This paper presents a case study of the phenomenon of controlled donation after circulatory death in intensive care. We present a critical analysis of care processes through the lens of a British donor family who participated in a national study of organ and tissue donation. Anonymised family quotes are applied to illustrate specific case issues, and with reference to relevant national guidance and international research. The case portrayed intimate detail of the moment in time when the family experienced the potential for controlled donation after circulatory death, factors that appeared to influence family consent, and the perceived expectations and outcomes arising from the donation decision. Case analysis revealed local compliance with best practice guidance and compassionate end-of-life care whilst supporting organ retrieval. Caring for the grieving family of potential organ donors requires sensitivity and skill. Of importance is a sound professional knowledge and understanding of the clinical care pathway, together with effective teamwork, optimal communication, family and staff support. Further research is required to determine the impact of controlled donation after circulatory death on family grief and bereavement

Organs and organisations: Situating ethics in organ donation after circulatory death in the UK

Controlled organ donation after circulatory death (DCD) has recently been revived in the UK, as part of attempts to increase organ donation rates. The re-introduction of DCD has subsequently become the focus of bioethical controversy, since it necessitates intervening in the care of dying patients to obtain quality donor organs. Transplant policy responses to these concerns have generated new legal and ethical guidelines to address uncertainties around DCD, producing claims that the UK has overcome’ the ethical challenge of DCD. In contrast, by drawing on Lynch's call to ‘respecify’ ethics, this paper argues that ethics in DCD cannot be reduced to abstract directives for practice, but, instead, are composed and dealt with as an organisational problem. To do this, I utilise data from an ethnographic study examining the production of the ‘minority ethnic organ donor’ within UK organ donation settings; in particular, the data pertains to a case hospital which was in the process of developing a DCD programme during the period of fieldwork. Findings show that the ethics of DCD are encountered as practical sets of problems, constructed in relation to particular institutional locales. I describe how these issues are worked-around by creating conditions to make DCD organisationally possible, and through the animation of standard procedures into acceptable forms of practice. I argue that ethics in DCD go far beyond normative bioethical principles, to encompass concerns around: the reputation of hospital Trusts, public perceptions of organ donation, the welfare of potential donor families, and challenges to the work of health professionals caring for dying patients. The paper enriches understanding of ethics in science and medicine by showing how ethics are assembled and negotiated as a practical-organisational concern, and calls for further examination of how DCD gets constructed as a potential problem and is made to happen in practice