Conceptualizations of consciousness and continuation of care among family members and health professionals caring for patients in a minimally conscious state

Background: The American Academy of Neurology recently emphasized the importance of communicating with patients' families to better reflect patient values in clinical care. However, little is known about how decisions about continuing rehabilitative care made by family caregivers and healthcare providers working with minimally conscious patients are informed by conceptualizations of consciousness and moral status. Methods: We explored these issues in interviews with 18 family caregivers and 20 healthcare professionals caring for minimally conscious patients. Data were analyzed using thematic content analysis. Results: Results suggest that family members and healthcare professionals share similar views of what consciousness is ("being there") and what it is indicated by ("a look in the eyes," and/or an "ability to do"/agency). They also share a belief that the presence (or "level") of consciousness does not determine whether rehabilitative care should be discontinued. Rather, it should be determined by considerations of suffering and well-being. Providers were more likely to view suffering as rationale for discontinuation of care, while family members viewed suffering as an indicator of and motivator for potential recovery. Conclusions: Findings can help optimize family-provider communications about minimally conscious patients by acknowledging shared assumptions and interpretations of consciousness, as well as key areas where perspectives diverge. Family and professional caregivers' interpretations of consciousness and suffering are implicated in decisions about continuing rehabilitation for minimally conscious patients. Family members and healthcare providers both rely to some extent on non-observable evidence to evaluate consciousness, which may be an adaptive and philanthropic response to clinical uncertainty. Acknowledging shared assumptions and interpretations of consciousness, as well as diverging perspectives, can help to optimize family-provider communications.