Experiences of bereaved family caregivers of patients with Alzheimer’s disease regarding do-not-resuscitate orders: A qualitative study

Background This study aimed to explore the end-of-life decision-making experiences of bereaved family caregivers of Alzheimer’s disease (AD) patients, focusing on do-not-resuscitate orders. Given the high emotional and ethical burden on caregivers, understanding their challenges and needs is crucial to enhancing palliative care for AD patients. Methods A qualitative, exploratory study was conducted using semi-structured interviews with 22 family caregivers recruited through purposive sampling in central Taiwan. Participants were primary caregivers for AD patients who had been bedridden for at least a year before death. Analysis employed inductive thematic coding to identify key themes, with rigor ensured through multiple coding, member checking, and reflective journaling. Results Three major themes emerged: (1) Decision-making difficulties, where caregivers felt pressure and conflict when making urgent decisions; (2) Willingness to let go, which involved accepting the inevitability of death when recovery was no longer possible; and (3) Embracing the consequences of the decision, reflecting caregivers’ sense of relief and acceptance post-decision. Cultural factors, such as filial piety, were found to influence decision-making processes, often intensifying emotional conflicts. Conclusions Findings underscore the importance of early, culturally sensitive discussions around end-of-life care in palliative settings for AD patients. Healthcare providers are encouraged to initiate these discussions, offering clear explanations and emotional support to assist caregivers through decision-making. This study highlights the need for a family-centered approach that respects cultural nuances, helping to reduce caregiver stress and enhance the quality of palliative care in AD contexts.