For the first time in over half a century, more people in the United States are dying at home than in hospitals, a remarkable turnabout in Americans' view of a so-called "good death."
In 2017, the last year for which complete statistics are available, 29.8% of deaths by natural causes occurred in hospitals, and 30.7% at home, researchers reported in the New England Journal of Medicine. (The rest are happening primarily in nursing homes or hospice centers.)
While the gap between home and hospital deaths might be small, it had been narrowing for years, and the researchers believe dying at home will continue to become more common.
The last time Americans died at home at the current rate was the middle of the past century, according to Dr. Haider Warraich, a cardiologist at the Veterans Affairs Boston Healthcare System and a co-author of the new research.
In 1912, about two-thirds of residents died at home, he said. By the 1950s, the majority of Americans died in hospitals, and by the 1970s, at least two-thirds did.
Americans have long said that they prefer to die at home, not in an institutional setting. Many are horrified by the prospect of expiring under fluorescent lights, hooked to ventilators, feeding tubes and other devices that only prolong the inevitable.
Advocacy groups have encouraged families to have conversations about end-of-life care, which often reveal that older relatives do not want heroic measures to extend their lives in hospitals. About 45% of older people have completed advance directives, which often specify that doctors should not take extreme measures to prolong life.
And hospice care, often delivered at home, is more available than ever before. In 2017, 1.49 million Medicare beneficiaries received hospice care, a 4.5% increase from 2016, according to the National Hospice and Palliative Care Organization.
"There has been a kind of cultural shift that has romanticized dying at home and made it the only way to die," said Carol Levine, an ethicist at the United Hospital Fund in New York.
At the same time, hospitals have long had financial incentives not to keep Medicare patients for long periods, noted Dr. Diane Meier, a professor of geriatrics and palliative medicine at the Icahn School of Medicine at Mount Sinai in New York.
Typically, Medicare pays hospitals per diagnosis per patient, not for the number of days a patient is in the hospital. Administrators "don't want it to go on for a long time," Meier said.
"We send very very sick, complicated patients home," she added.
Despite all the positive "good death" buzz, it's not always the warm and fuzzy experience people are expecting.
Once the terminally ill patients are sent home, they typically wind up in the care of family members — who might or might not be up to the challenge.
"We have put a tremendous burden on families in the type of care they have to provide and the type they have to pay for," said Dr. Sean Morrison, chair of geriatrics and palliative medicine at the Icahn School of Medicine.
Margaret Peterson, 58, a fellow at the Chicago Center for Family Health, cared for her terminally ill husband, Dwight, at home. Even with the help of a home health aide and nurses from a hospice, the burden was crushing, she recalled. And her husband's suffering in the last few days seemed needless.
Still, he did not want to return to a hospital because he did not want to die there.
"He had way, way more pain than he needed to have," his wife said.
"There is a kind of fantasy where if you make all the right choices, you get this beautiful and peaceful death," she added. "But you can do everything right and still have an unpredictable and tragic experience."
The key is for families to fully know what to expect, Meier said.
"I don't think families or caregivers understand what it's like to die at home," she said. "They will need to understand how to manage symptoms, like pain or shortness of breath or confusion. They are on-call 24/7 and have to be alert to changes at all times."