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

Wilson, Eleanor; Caswell, Glenys; Turner, Nicola; Pollock, Kristian


Eleanor Wilson

Glenys Caswell

Nicola Turner

Kristian Pollock


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.

Journal Article Type Article
Publication Date Dec 1, 2018
Journal Journal of Pain and Symptom Management
Print ISSN 0885-3924
Electronic ISSN 1873-6513
Publisher Elsevier
Peer Reviewed Peer Reviewed
Volume 56
Issue 6
Pages 962-974
APA6 Citation Wilson, E., Caswell, G., Turner, N., & Pollock, K. (2018). Managing medicines for patients dying at home: a review of family caregivers’ experiences. Journal of Pain and Symptom Management, 56(6), 962-974. doi:10.1016/j.jpainsymman.2018.08.019
Keywords Managing medication; End of life; Home care; Family caregivers’ experiences; Prescribing
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