Patient participation in Clinical Ethics Support Services

Abstract

Clinical ethics support services (CESS) can assist clinicians with the resolution of moral problems that arise in healthcare. They sometimes help clinicians clarify, for instance, the ‘right’ thing to do with regard to the care of a specific patient. However, CESS discussions do not typically involve patients as participants, a matter which has recently begun to be questioned. There exists, however, considerable variation within the category of CESS. These services can be, for instance, clinical ethics committees, individual ethics consultants or small group gatherings focused on moral reflection. So far, academic debate about patient participation has been localised to the context of specific forms of CESS or it has been with regard to CESS discussions as a whole. In this thesis, I examine whether patients should participate in clinical ethics discussions with reference to the practical aims and philosophical assumptions of three different CESS approaches. My analysis leads me to three different conclusions about patient participation. Namely: (i) Patients should not directly participate in clinical ethics committee discussions (ii) Patients should always be invited to participate in discussions with clinical ethics consultants (iii) Patient participation in moral case deliberation may sometimes be appropriate and other times not. In doing so, I show that an examination of whether patients should participate in clinical ethics discussions cannot be considered separately from the aims and philosophical assumptions of different CESS approaches.