Talking about desire to die: Talking past each other? A framework analysis of interview triads with patients, informal caregivers, and health professionals.

Abstract

Objectives: Up to 40% of seriously ill patients develop a (temporary) desire to die which can lead to requests for assisted dying. Health professionals often feel uncertain about addressing these topics, while informal caregivers may feel guilty and left out. Open and respectful communication proves beneficial. It remains unclear how this communication ideal realizes within the lived experience of all 3 parties. Therefore, we conducted in-depth analysis of communication strategies about desire to die from triangulated perspectives of patients, informal caregivers, and health professionals.

Methods: We conducted semi-structured interviews with purposefully sampled triads consisting of seriously ill patients, their respective informal caregivers and health professionals. Interviews were part of the qualitative evaluation of a 3-phase mixed-methods study on the effects of communication about desire to die on seriously ill patients. We followed a framework analysis approach to build communication types.

Results: From the N = 13 patients, 54% suffered from oncological diseases. Health professionals (N = 13) were multiprofessional. Informal caregivers (N = 13) were partners, children, or another relation. All in all, we conducted N = 14 interview triads (n = 3 incomplete; N = 39 individual interviews).Four key themes emerged from analysis: (a) how open communication was perceived, (b) whether participants reported shared reality, (c) how they talked about death, and (d) their communication strategies.Ultimately, 3 communication types were inductively derived at from these key themes. Type 1 "Between the Lines," type 2 "Past each Other" and type 3 "Matter of Fact" show differing expressions on the key themes, especially on (b) shared reality. Specific type characteristics produce suggestions for health professionals' communicative practice.

Significance of results: Awareness of typical communication strategies is necessary to foresee potential pitfalls such as loss of information or acting on unchecked assumptions. To reduce distress and increase information flow, health professionals should actively approach informal caregivers for desire to die conversations.