The role of patients in clinical ethics support: a snapshot of practices and attitudes in the United Kingdom

Abstract

Clinical ethics committees (CECs) in the United Kingdom (UK) have developed significantly over the past 15 years. The issue of access to and participation in clinical ethics consultation by patients and family members has, however, gone largely unrecognized. There are various dimensions to this kind of contact, including patient notification, consent and participation. This study reports the first specific investigation of patient contact with UK CECs. A questionnaire study was carried out with representatives from UK CECs. Results suggest that patient participation in clinical ethics consultation is low and unlikely to change significantly in the near future. Attitudes towards patients having a role in clinical ethics consultation are mixed, with a variety of reasons put forward both for and against patient participation. These results are discussed in the light of common themes in the literature and the practical and political context of clinical ethics support in the UK.

Development of clinical ethics services in the UK: a national survey

“…The differential access afforded to clinicians and to patients and their families by UK committees has been noted previously 22. This is not unique to UK CESs and the involvement of patients and their families in ethics consultation has been debated in other national contexts 23 24.…”

Principle or Process at the End of Life?

“…This is not always the case, including in the United Kingdom, where clinical ethics committees apparently seldom hear directly from family members (Newson 2009). Moreover, and certainly in the United Kingdom, there has been criticism of some clinical ethics support services for their alleged lack of robust "due process" and for their variability in training, competencies, and standards (McLean 2008).…”

Application of METAP methodology for clinical ethics consultation in end-of-life care in Bulgaria

“…35 Patient direct involvement in CEC is usually supported, even though patients and their relatives are not always favourably disposed to such participation. 36,37 While in some studies in England, 38 only 23% of patients were involved in ethics consult meetings; in France, the patient's participation is obligatory. 39 In any case, possible negative effects on the patient as a result of participation in ethics meetings should be born in mind, and followup should be planned.…”