One death doesn't fit all: how should we approach end-of-life care in very frail adults?

Abstract

Death is inevitable. When, however, is bound by uncertainty in frailty. A purely proactive approach to dying - exemplified by the DNACPR (do not attempt cardiopulmonary resuscitation) form - is unrealistic. What does a good death look like - and who decides? To understand the experiences of primary care clinicians and bereaved relatives in end-of-life (EOL) care and inform future service provision for frail and dying people. We conducted 21 semi-structured interviews with 12 GPs and 9 relatives of recently deceased patients and completed an inductive thematic analysis. We identified four themes: 1) relationships and duty of care: many participants identified the responsibility - medical and familial - associated with EOL care. Discussions and decision-making around death, while crucial, create a significant emotional burden; 2) power and authority: the decision-making process involves multilayered power dynamics between families, patients, and clinicians in attempts to manage uncertainty. Medical judgements' authority can be simultaneously welcomed and challenged. Advanced care planning can become symbolic of hidden tensions around acceptance of death; 3) conflicting ideologies: conflicting binary ideas around a 'good death' recurred, with no universal preferences. Understanding where families, the dying, and the doctor sit on these spectra is crucial and rarely communicated; 4) resource limitations (for example, lack of social care support) constrain the decision-making process. You only get one chance to die well. Thoughtful and empathetic decision-making in a reactive and complex environment is crucial to supporting patients, loved ones, and clinicians. A one-size-fits-all proactive 'death conveyor belt' is unrealistic.