Family Caregiving at the End of Life and Hospice Use: A National Study of Medicare Beneficiaries

J Am Geriatr Soc. 2020 Oct;68(10):2288-2296. doi: 10.1111/jgs.16648. Epub 2020 Jun 30.


Background/objectives: Hospice care confers well-documented benefits to patients and their families, but it is underutilized. One potential reason is inadequate family support to make end-of-life decisions and care for older adults on hospice at home. We assessed the association between amount of family support and hospice use among a population of decedents and among specific illness types.

Design: Prospective cohort study using the National Health and Aging Trends Study waves 2011 to 2017, linked to Medicare claims data.

Setting: Contiguous United States.

Participants: A total of 1,868 NHATS decedents.

Measurements: Outcome variable was 1 day or longer of hospice. Family caregiving intensity was measured by self-reported hours of care per week and number of caregivers. Covariates included probable dementia status and other demographic, clinical, and functional characteristics.

Results: At the end of life, hours of family caregiving and numbers of helpers vary widely with individuals with dementia receiving the most hours of unpaid care (mean = 64.5 hours per week) and having 2.4 unpaid caregivers on average. In an adjusted analysis, older adults with cancer receiving 40 hours and more of unpaid care/week as compared with fewer than 6 hours per week were twice as likely to receive hospice care at the end of life (odds ratio = 2.0; 95% confidence interval = 1.0-4.1). This association was not seen among those with dementia or among decedents in general. No significant association was found between number of caregivers and hospice use at the end of life.

Conclusion: Older adults at the end of life receive a high number of hours of help at the end of life, many from more than one caregiver, which may shape hospice access. Better understanding of disparities in hospice use can facilitate timely access to care for older adults with a serious illness. J Am Geriatr Soc 68:2288-2296, 2020.

Keywords: cancer; dementia; end of life; family caregiving; hospice.

Publication types

  • Research Support, N.I.H., Extramural

MeSH terms

  • Aged
  • Aged, 80 and over
  • Caregivers / statistics & numerical data*
  • Female
  • Health Services Accessibility / statistics & numerical data
  • Healthcare Disparities
  • Hospice Care / statistics & numerical data*
  • Humans
  • Male
  • Medicare
  • Odds Ratio
  • Patient Acceptance of Health Care / statistics & numerical data*
  • Terminal Care / methods
  • Terminal Care / statistics & numerical data*
  • Time Factors
  • United States