In Difficult Cases, ‘Families Cannot Manage Death at Home’
The lead author, Dr. Melissa Wachterman, a palliative care specialist at Harvard Medical School, and her co-authors argue that alternative locations, including free-standing inpatient hospice facilities and hospice units within hospitals, could better care for some terminal patients with difficult symptoms and provide relief for exhausted families. They also contend that financial incentives play a role in where death occurs.
“There’s a lot of cultural pressure: ‘If you really loved this person, you’d keep them at home,’” Dr. Wachterman said in an interview. “We need to acknowledge that there are people whose needs are so great that families cannot manage death at home.”
Ninety-eight percent of hospice patients covered by Medicare receive what is called “routine home care.” The hospice organization sends nurses, aides, a social worker and a chaplain, in addition to drugs and equipment like a hospital bed, to the patient’s home. But it can’t provide 24-hour care; that falls to family or friends, or helpers paid out of pocket.
Often, that’s sufficient. But death can follow unpredictable trajectories, and some terminal conditions appear better suited to home death than others. Cancer patients have the greatest odds of dying at home, Dr. Warraich’s analysis showed. Patients with dementia are most likely to die in a nursing home, and those with respiratory disease in a hospital.
Some patients “may not need someone at the bedside 24 hours a day, but they need someone available 24 hours a day,” Dr. Wachterman said.
A handful of hospice patients receive “continuous home care,” which means nurses and aides are provided eight to 24 hours a day; this accounts for 0.2 percent of hospice days, according to the Medicare Payment Advisory Commission, an independent agency that advises Congress on Medicare issues. Another handful receive inpatient services in a hospice facility, hospital or nursing home.
But inpatient care is hard to secure, accounting for just 1.2 percent of all hospice days in 2019. To be covered under Medicare, the patient must be diagnosed with a symptom that cannot feasibly be managed in any other setting, and “that’s a pretty high bar,” Dr. Wachterman said.