What can we learn from the accounts of lay carers administering end of life medications to a loved one at home? Exploring benefits, challenges and ways to empower patients and carers in the future

Hendry, Annie, Poolman, Marlise, Nelson, Annmarie ORCID: https://orcid.org/0000-0002-6075-8425, Wright, Stella, Wilkinson, Clare and Hiscock, Julia 2025. What can we learn from the accounts of lay carers administering end of life medications to a loved one at home? Exploring benefits, challenges and ways to empower patients and carers in the future. Palliative & Supportive Care 24 , e2. 10.1017/s1478951525101168

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Abstract

Objectives: Most people at the end of life wish to die at home. Lay carers are crucial to supporting a home death and key to a good death is management of symptoms; this may prevent unwanted hospital admissions. If a dying person is too weak to swallow, regular medicines are administered continuously via subcutaneous (SC) cannula. When symptoms “break through,” additional (or as-needed) doses can be given, usually by a visiting healthcare professional. Delayed symptom control can occur due to time taken for healthcare professionals to arrive at the home. Lay carers can be trained to administer as-needed SC medicines; the practice is safe and legal in the UK, although not widely used. The “CARer-Administration of as-needed SC medication for breakthrough symptoms in people dying at home” (CARiAD) feasibility trial of lay carer administration in the UK was the first to conduct in-depth interviews with carers trained in the practice. The objective of this paper is to give voice to carers and show how experiences reflect benefits and challenges of lay administration at the end of life. Methods: Qualitative interviews with carers trained in the practice. Interviews were analyzed using Interpretive Phenomenological Analysis. Results: Caring for a loved one at home during the last days of life is complex. Accounts reveal a desire to fulfill a loved one’s wishes by keeping them at home and having the death they wanted. Carers were afraid of uncontrolled symptoms, especially pain, empowered by the ability to help and grateful to avoid long delays. Potential for carer burden and fears of hastening death require careful reassurance from health care professionals. Significance of results: We learned that carers endorsed and embraced the opportunity to do more to keep their loved ones comfortable and at home. This is significant in making the case for wider access to the practice in the UK.

Item Type:	Article
Date Type:	Published Online
Status:	Published
Schools:	Schools > Medicine
Additional Information:	License information from Publisher: LICENSE 1: URL: http://creativecommons.org/licenses/by/4.0, Type: open-access
Publisher:	Cambridge University Press
ISSN:	1478-9515
Date of First Compliant Deposit:	5 January 2026
Date of Acceptance:	28 November 2025
Last Modified:	05 Jan 2026 14:46
URI:	https://orca.cardiff.ac.uk/id/eprint/183544

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