Managing medicines for patients dying at home: a review of family caregivers’ experiences

Context: Increased life expectancy, technical advances in treatment and symptom control, and the extension of palliative care in community settings not only lengthen life, but make it possible for many patients to be cared for, and to die, at home. Moreover, death increasingly occurs in late old age and after a prolonged period of co-morbidity and/or frailty. This has far reaching consequences for the way that professional services are resourced and organised, and for the informal carers who are often responsible for providing the greater part of patient care, including management of complex medication regimes. Objectives: To explore the literature focused on family caregivers’ experiences of medications management for patients being cared for and dying at home. Methods: This literature review takes a Critical Interpretive Synthesis approach to the review of 15 identified papers. Results: Findings show that family caregivers can struggle to manage medications for someone who is dying at home, yet there is an expectation that they will take on these roles and they are often judged by professional standards. Five key themes identified particular issues around administration, organisational skills, empowerment, relationships and support. Conclusion: As increasing demands are placed on family caregivers, there remains limited acknowledgement or understanding of the challenges they face, how they cope, or could be best supported. Alongside training, family caregivers need access to 24hrs support and medication reviews to rationalise unnecessary medications. Furthermore, the ethical challenges arising from administering medicines at the end of life also need to be acknowledged and discussed.