In Difficult Cases, ‘Families Cannot Manage Death at Home’

Where do people most want to be when they die? At home, they tell researchers — in familiar surroundings, in comfort, with the people they love.

That wish has become more achievable. In 2017, according to an analysis in The New England Journal of Medicine, home surpassed the hospital as the most common place of death — 30.7 percent of deaths occurred at home, compared with 29.8 percent at the hospital.

“It’s probably the first time that’s happened in the United States in modern times,” said Dr. Haider Warraich, a cardiologist at the Veterans Affairs Boston Healthcare System and an author of the study, published in 2019. Technically, the proportion was even higher, since some people who died in nursing facilities (20.8 percent) were long-term residents and the nursing home effectively was their home.

Dr. Warraich credited the change to the rise of hospice care, for which Congress authorized Medicare coverage 40 years ago. By 2019, more than half of Medicare beneficiaries who died were enrolled in hospice. “There’s been a cultural shift,” he said. “People don’t want to die in hospitals, and hospice helps make that possible.”

But not always.

When Lee Zeiontz was dying of lung cancer, she wanted to remain in her apartment on the Lower East Side of Manhattan with her cat on her bed and her neighbors stopping by. Lynda Hollander, her niece, hired a round-the-clock aide to supplement the hospice staff.

But Ms. Zeiontz’s pain eventually intensified and her older relatives were uneasy about administering morphine. “I think they were afraid of her dying at home,” said Ms. Hollander, a social worker in West Orange, N.J. They moved Ms. Zeiontz to an inpatient hospice unit at Mount Sinai Beth Israel Hospital, where she died a day and a half later, at 70.

Similarly, Alan Mironer had vowed to care for his wife, Lynne, with hospice help in their home in Edina, Minn., as she died of breast cancer. “He felt it was his responsibility,” their son, Mark, said. But as she weakened and became unable to walk to the bathroom, he said, “suddenly, it was so much more work to take care of her.” The elder Mr. Mironer, then 81, became overwhelmed.

Neighbors told them about a small hospice facility in Edina, with room for eight patients. Ms. Mironer spent her final week there, dying at 78.

Such experiences prompted an article this month in The New England Journal of Medicine that pointedly asks, “Is There Really ‘No Place Like 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.

The authors also argue that although Medicare pays more for inpatient care — $1,000 a day, on average, compared with $200 for home care — profit margins are higher at home. More than 70 percent of hospices are now for-profit agencies.

Rankings on the quality of hospital care like those published by U.S. News & World Report may also prompt hospitals, who want to keep their mortality statistics low, to discharge patients to home hospice.

Edo Banach, president and chief executive of the National Hospice and Palliative Care Organization, disputed the article’s financial assertions. “It’s not true that margins are necessarily higher for routine home care versus inpatient,” he said, attributing profit differences to the length of a patient’s stay rather than the setting.

Instead, Mr. Banach primarily blamed a fear of Medicare audits, which are not uncommon, for the infrequent use of inpatient hospice care. “Providers are very reluctant to use that benefit unless it’s also clear that they won’t be hurt by the government on the back end” and forced to return contested payments, he said.

Still, he said there was nothing in the authors’ recommendations that he fundamentally disagreed with, including their calls for changes like financial support for family caregivers who assist dying patients.

The authors also advocate expanded access to continuous home care and lower barriers to inpatient end-of-life care, in hospice facilities (the national organization estimates that about 30 percent of hospices have them) or hospice units within nursing homes and hospitals.

Of the three times I have accompanied family members to their deaths, we achieved the good-death-at-home paradigm once: My mother died at 80, with uterine cancer and after a major stroke, in her own bed. My father and I cared for her, with a hospice team. He died at 90, when sepsis overwhelmed him in a hospital before I could arrange for hospice care at home.

My sister’s death in 2015 showed the possibility of a middle ground. Disabled by late-onset Tay-Sachs disease, a neurological condition, she had been hospitalized with an uncertain prognosis. I was her health care proxy.

As she declined, she developed such severe pain that, between sobs, she was calling for our long-dead parents. I immediately enrolled her in hospice and began planning to move her back to her assisted-living facility, so that she could die in her own apartment.

It soon became clear that would be impossible. In the hospital, hospice nurses visited twice a day, constantly raising the dose of her morphine drip before switching to more potent medications. Having staff nurses always nearby allowed us to provide comfort, relying on a team we never could have duplicated on our own.

To its credit, the hospital understood our needs. It arranged for a private room with 24-hour access for my cousin and me. We turned off the TV and the intercom, dimmed the lights, played soothing music, allowed family and friends to come and kept the vigil. It wasn’t homey, but it was peaceful. My sister, just 62, died after 24 days in the hospital and 14 in hospice care.

Far more hospice patients and families could probably benefit from a similar option when home care proves too difficult.

“For many patients, ‘home’ isn’t the physical place,” Dr. Warraich said. “It’s a metaphor for a place that’s not medicalized, that’s comfortable and full of love.”