Dying in a place of love
Most people want to die at home, but it’s not always the best course, some health experts argue
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% of deaths occurred at home, compared with 29.8% 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. Technically, the proportion was even higher, since some people who died in nursing facilities (20.8%) were long-term residents and the nursing home effectively was their home.
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 in New York City with her cat on her bed and her neighbors stopping by. Lynda Hollander, her niece, hired an aide to supplement the hospice staff.
But 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 Hollander, a social worker in West Orange, New Jersey. They moved 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, Minnesota, 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 Alan Mironer, then 81, became overwhelmed.
Neighbors told them about a small hospice facility in Edina, with room for eight patients. Lynne 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,’” Wachterman said. “We need to acknowledge that there are people whose needs are so great that families cannot manage death at home.”
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% 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% 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,” Wachterman said.
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% 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 gooddeath-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.
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,” Warraich said. “It’s a metaphor for a place that’s not medicalized, that’s comfortable and full of love.”