Self-care Towards the End of Life: A Systematic Review and Narrative Synthesis on Access, Quality and Cost

According to the World Health Organization, self-care is the ability of individuals, families and communities to promote health, prevent disease, maintain health, and cope with illness and disability with or without the support of a healthcare provider.  Self-care at end of life is under-researched. Existing studies on self-care are often limited to the early to moderate stages of chronic disease.  These studies have shown that self-care can increase peoples’ feelings of control, reduce care use and lower the overall cost for health and social care systems.

Gallagher and colleagues (2024) conducted a review of the current evidence on practices of self-care in life-limiting conditions and its impacts on healthcare utilisation, quality of life and associated costs. The specific research questions included:

  1. What are patient, family and professional views of self-care?
  2. How does self-care affect formal care utilisation?
  3. What is the impact of self-care on patients’ quality of life?
  4. How does self-care affect overall cost at the end of life (for patients, families and services)?

Thirty-three studies were included in the review and mostly examined self-care monitoring or maintenance, with 17 studies presenting data on self-care monitoring, 14 on self-care maintenance and 11 on self-care management. The researchers used a narrative synthesis approach to integrate findings from a range of study types.

Views of Patients, Professionals and Caregivers

The researchers identified that self-care is increasingly burdensome for patients, carers and professionals towards the end of life. Self-care monitoring and maintenance became increasingly unfeasible due to illness and symptom burden, leading to a send of failure for some patients. Self-monitoring may delay patients from seeking professional help, leading to increased hospitalizations.

Use of Care Towards the End of Life

The evidence concerning effect of self-care maintenance on hospital admissions was contradictory, with some studies reporting an either increase, some reporting a decrease and other reporting no effect.

Evidence on Quality of Life

The review found no significant differences in quality of life between populations practising self-care compared to usual care populations.

Evidence on Cost

Two studies of cost-utility analyses of specific self-care interventions found them to be beneficial. A specific self-care monitoring intervention for patients with incurable cancerdid not impact costs and was seen to be slightly less effective compared to usual care.

This study sheds new light on how self-care transitions from the advanced stages of disease towards the end of life with a focus on impacts to utilisation, quality and cost across a variety of diagnoses.

Source: Gallagher, J., Antunes, B., Sutton, J., Kuhn, I., Kelly, M. P., Duschinsky, R., & Barclay, S. (2024). Self-care towards the end of life: A systematic review and narrative synthesis on access, quality and cost. Palliative Medicine, 02692163241286110.