Dying at Home: The Burden of Medication Management

Betty R. Ferrell, PhD, RN


February 13, 2019

The management of medications in patients with late-stage disease is becoming a major area of concern.[1,2,3] The aging population of patients and family caregivers and a shift to care in the home, even for the terminally ill, are critical factors underpinning this concern.

The management and administration of medications to seriously ill patients for pain, dyspnea, constipation, and many other physical and psychological symptoms (including anxiety, agitation, and delirium) typically fall on the shoulders of nonprofessional family caregivers. But little is known about how these informal caregivers cope with the demands of the complex medication regimens required to provide comfort and symptom control for patients approaching death.

A recent literature review[4] explored the experiences and perspectives of family caregivers in managing medications for a family member being cared for and dying at home. The authors reviewed 15 studies in this area and synthesized the findings into five key themes that provide a framework to improve support for these caregivers:

These concepts provide important perspectives on caregiver fears, such as overmedicating the patient, and challenges in understanding instructions, particularly with multiple medications.

  • Administration of medications (over-/undermedicating, side effects, correct dose, route, and frequency)

  • Organizational skills (preparation, record-keeping, safe drug storage and disposal)

  • Empowerment (confidence in their ability to manage medications)

  • Relationships (within families and with healthcare providers)

  • Support (professional support and advice; feelings of isolation and abandonment when support was lacking)


This review is a needed reminder for all clinicians of the enormous burdens taken on by family caregivers and their needs for education and support.[5,6,7] Family caregiver concerns are very similar to those of nurses, which is not surprising given that care in the home is often similar to high-acuity care in hospital settings. This key aspect of family caregiving is worth attention given the changing demographics and increasingly complex care for seriously ill patients.


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