Managing Medicines for Patients Dying at Home: A Review of Family Caregivers' Experiences

J Pain Symptom Manage. 2018 Dec;56(6):962-974. doi: 10.1016/j.jpainsymman.2018.08.019. Epub 2018 Sep 11.


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 also 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 comorbidity and/or frailty. This has far-reaching consequences for the way that professional services are resourced and organized 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' (FCGs) experiences of medication 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 articles.

Results: Findings show that FCGs 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 are often judged by professional standards. Five key themes identified particular issues around administration, organizational skills, empowerment, relationships, and support.

Conclusion: As increasing demands are placed on FCGs, there remains limited acknowledgment or understanding of the challenges they face, how they cope, or could be best supported. Alongside training, FCGs need access to 24 hours of support and medication reviews to rationalize unnecessary medications. Furthermore, the ethical challenges arising from administering medicines at the end of life also need to be acknowledged and discussed.

Keywords: Managing medication; end of life; family caregivers' experiences; home care; prescribing.

Publication types

  • Research Support, Non-U.S. Gov't
  • Systematic Review

MeSH terms

  • Caregivers / education
  • Caregivers / psychology*
  • Disease Management
  • Family / psychology*
  • Home Nursing / education
  • Home Nursing / methods*
  • Home Nursing / psychology*
  • Humans
  • Medication Adherence*
  • Terminal Care* / methods
  • Terminal Care* / psychology