Understanding the Perspectives of UK-Based Family Members of People who have Chosen to End their Life by Assisted Dying

Abstract

Assisted dying is growing global momentum as an option to end unbearable suffering in particular medical circumstances, but remains illegal in the UK. Currently, UK citizens wishing for an assisted death must go to Switzerland; the only country to offer this service to non-citizens, but it is expected, by law, that family members do not facilitate this. This study sought to understand the perspectives of UK-based family members of people who have had an assisted death on assisted dying, to understand the contexts informing these perspectives, how they might connect with prior views on death and dying and the resources that they draw on during this period. Semi-structured interviews were conducted with five family members. This data was analysed using Interpretative Phenomenological Analysis, revealing four themes (A life dictated by illness, Life as autonomous, Navigating an “illegal” landscape and Assisted dying should be legalised). The results showed that family members felt there was a role for assisted dying in particular contexts related to experienced or preempted unbearable suffering associated with a medical diagnosis, and/or when the individual felt ‘ready’ to die. These perspectives appeared to be informed by views around the importance of autonomy and choice, the perceived importance of independence and the burden associated with being cared for, and experiences of navigating the process in the current UK context. Participants also shared what has helped them during this time (e.g. maintaining life as usual, connecting with close others and new hobbies). It is hoped these results can contribute to the current debate about the legalisation of assisted dying in the UK, to relevant policies should the UK legalise assisted dying, and to care considerations for tailoring support offered to individuals and families at times when an assisted death may be considered. Further research is needed to understand a wider range of perspectives within the UK on this topic.