Moral Considerations of Patient Participation in Moral Case Deliberation: An Explorative Interview Study Among Healthcare Professionals, (Parents of) Patients and Facilitators

Despite increasing initiatives in healthcare, it often remains a challenge to effectuate patient participation. A promising space for patient participation is to be found within Moral Case Deliberation, a dialogical form of Clinical Ethics Support. However, presence of patients in these dialogues is still rare. This paper aims to provide a better understanding of moral considerations of participation of patients (and their relatives) in Moral Case Deliberation, by collecting expectations and experiences from patients, relatives, healthcare professionals and facilitators. The study is an explorative interview study in two clinical settings. Interviewees were recruited through purposeful sampling and among all relevant perspectives (i.e. patient, parent, healthcare professional and facilitator). Twelve interviewees were included; most did not yet have actual experiences with patient participation in Moral Case Deliberation. A variety of moral considerations was found. Three overarching themes were identified: 'equality', 'transparency' and 'vulnerability', connected to nine considerations: 'sharing the moral dilemma, engagement/acknowledgement of the patient and parent perspective', 'mutual understanding', 'complexities', 'risk of harm', 'self-censorship', 'safety' and 'power dynamics'. There seems to be - as of yet - no principled reason to adopt an attitude of categorial rejection nor acceptance of inclusion of patients or family in Moral Case Deliberation. This study provides a starting point for further identification of and reflection on such considerations. We think that a careful assessment of various considerations is something that should be done by those directly involved in the moral issue at hand on a case-by-case basis.