UK family members’ experience of a relative’s dying and death in the context of a desired, but unrealised, assisted death: an interpretative phenomenological analysis

Background: Assisted dying is a fiercely debated topic in the UK where it is currently illegal to assist someone to end their life. Champions of changing the law cite the limitations of palliative care to handle suffering, while change’s opponents fear it would pressure elderly, disabled and vulnerable people into pursuing an assisted death. Currently private members’ bills are under consideration in both the English and Scottish parliaments, which could change the law in England, Scotland and Wales. Northern Ireland has no legislative plans to change the law.

Against this background, assisted dying has been cited as an under-researched topic in the UK by both the National Bereavement Alliance and the British Medical Journal (Penny, 2020; Sleeman & Owen, 2021). Specifically on the interaction between assisted dying and family, Hitchcock (2023) and Fish (2023) have looked at the experiences of family members whose relatives and friends achieved an assisted death abroad. To date, there has been no dedicated research investigating the experience of family members whose terminally-ill relatives desired – but did not get – an assisted death.

Objective: The objective of the present research investigation is to explore UK family members’ experience of a relative’s dying and death in the context of a desired, but unrealised, assisted death. From this lived experience and meaning making, the implications for public policy and counselling psychology may be discerned.

Method: This study utilised a qualitative design and recruited 10 participants whose relatives desired an assisted death but did not get one. Participants took part in a semi-structured interview, the output of which was transcribed. Interpretative Phenomenological Analysis was employed to determine the themes and sub-themes.

Findings: Data analysis revealed four General Experiential Themes (GETs). These were: (1) “Your Autonomy, My Agency”; (2) The Trauma of Witnessing Terminal Illness; (3) The Provocation of Family Dynamics; (4) Navigating the Grief of an Unrealised Assisted Death. Within these four GETs, 10 sub-themes are identified.

Conclusion: The results provide important insight into the experiences of UK family members whose relatives did not get the assisted death they desired. From a policy perspective, the participants universally advocated a change in the law. Additional policy implications include broadening support for family members during disparate aspects of the dying process. From a counselling psychology perspective, therapists are likely to encounter a wide spectrum of concerns including diverse emotionality, autonomy/agency challenges, embodiment issues, family tension, intersectionality of trauma and grief, compounding bereavement, relational confrontations, possible prolonged grief and existential problems. In summary, this research highlights critical findings on assisted dying that provide an important contribution to societal discussion and the psychological professions.