The experiences of families who support a patient who dies from assisted suicide in Switzerland

Gamondi, Claudia and Preston, Nancy and Payne, Sheila (2022) The experiences of families who support a patient who dies from assisted suicide in Switzerland. PhD thesis, Lancaster University.

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Abstract

Background Permissive legislation about assisted dying is increasing internationally. While patients’ and health care professionals’ rights, duties, and needs are considered in guidelines, the experience of patients’ families remains under-researched. Aim To investigate the experience of family members with patients, health care professionals and right to die associations when the patient is in the process of seeking assisted suicide. Methods (i) A systematic literature review was performed about families’ experiences with a family member who died with assisted dying, in jurisdictions where it is it is legally permissible using thematic synthesis. (ii) An empirical qualitative interview study to investigate Swiss families’ reflections of their experiences when a family member is considering assisted suicide analysed deductively framework analysis. A secondary data analysis was performed using framework analysis to depict Swiss family members’ reflections on their interactions with health care professionals and right to die associations during the time their family members were considering assisted suicide. (iii) An empirical qualitative interview study with palliative care physicians to explore Swiss palliative care physicians’ accounts of interactions with patients and their families when they are considering assisted suicide analysed inductively with thematic analysis. Results The literature review (19 articles) showed that families across all jurisdictions are involved in assisted suicide decision and enactment, where open communication is maintained, and that family needs in this context are under-researched. The interview studies (28 relatives and 23 physicians) showed that Swiss family carers are often involved in the preparation of assisted suicide along with patients, irrespective of their personal values. Swiss palliative care physicians struggle to reconcile their ethical principles with the patients’ wishes to exercise their autonomy, and deplore the lack of legal and professional guidelines. The secondary analysis revealed that, in Switzerland, there is limited interaction about assisted suicide between families and health care professionals, where families report more open interactions with right-to-die associations. Conclusion It is argued that this thesis extends existing understanding of the role of family carers during assisted dying by (i) highlighting their active supporting role in many instances of this practice, (ii) describing the multiple moral and social tensions that result from this support, and (iii) drawing attention to the unmet needs of family caregivers, as well as treating physicians, in the context of assisted suicide.