Caregiving under the Medicare Hospice Benefit

Caregiving under the Medicare Hospice Benefit 
JAMA Internal Medicine - Viewpoint Aging and Health; by Helen P. Knight, MD; Richard E. Leiter, MD, MA; Harry J. Han, MD; 9/8/25 
As palliative care physicians, we frequently refer patients to hospice care. When we do so, we often worry about them. How will they and their families manage custodial care—the day in, day out, physical and financial demands of caregiving—on top of navigating the inherent challenges of end of life? We know that high-quality hospice agencies provide patients and their families with invaluable support for symptomatic, emotional, and spiritual needs. But in the US, due to constraints of Medicare reimbursement, hospice agencies provide only limited custodial care support; this lack of assistance often is an unwelcome surprise to our patients and families and profoundly shapes their end-of-life experience.