When my siblings and I placed our father in hospice care at home in the spring of 2021, his Alzheimer’s disease had reached its final stage. He could no longer dress, feed or move himself without help. We believed hospice would allow him to die peacefully, with dignity, in familiar surroundings.
Instead, we discovered how much of that responsibility falls on families.
Most Medicare hospice patients receive care at home, supported by agencies reimbursed through a fixed daily rate. In 2024, that payment averaged about $200 per patient, capped annually at roughly $33,500. That amount must cover nursing visits, medications, medical equipment and support staff.
In practice, it left families doing much of the hands-on work.
A nurse visited our home for about an hour twice a week. Securing an aide to help with bathing or toileting was difficult. My siblings and I were expected to bathe our father, change him, administer morphine and manage sedatives. Even as physicians, we felt unprepared for the emotional weight of those tasks.
At one point, when my father stopped swallowing and became severely dehydrated, we asked about intravenous fluids for comfort. The hospice agency could not provide them. My brother drove to a hospital, obtained IV supplies and inserted the line himself. Lacking a proper stand, we tied the fluid bag to a ceiling fan.
The contrast was stark. Medicare would readily cover a $3,000-a-day hospital bed, yet the hospice benefit — designed as a cost-effective alternative — often operates on a budget too tight to meet patients’ needs at home.
Many families cannot absorb that burden. As a result, some patients end up in hospitals or nursing homes, even if they hoped to remain at home. Others may forgo needed medications because they are deemed too expensive under hospice budgets.
Modern hospice care, first shaped by physician and nurse Cicely Saunders in 1967, was built on relieving pain, preserving dignity and honoring the emotional and spiritual dimensions of dying. Yet underfunding and the rise of for-profit ownership — now accounting for about three-quarters of agencies — risk undermining those goals.
More consistent in-home aide support would ease the strain on families and likely prevent costly hospitalizations. Until then, many families will continue to shoulder responsibilities they never expected — at the most vulnerable moment of their lives.
