For the first time since the early 20th century, more people in the United States are dying at home than at the hospital, according to a report published in the New England Journal of Medicine on Wednesday.
The researchers looked at the number of natural deaths in the United States based on data collected by the US Centers for Disease Control and Prevention and the National Center for Health Statistics. They define natural deaths as when a medical condition leads directly to death, meaning people died from heart problems or cancer, among other diseases, rather than dying in a car accident, for example. The authors looked at data from 2003 to 2017.
They found that hospital deaths are still common, but that number is declining. There were 905,874 hospital deaths in 2003 — 39.7% of deaths — and by 2017 there were 764,424 hospital deaths, 29.8% of deaths.
The number of deaths at home, though, increased from 543,874 (23.8%) in 2003 to 788,757 (30.7%) in 2017.
There was also an increase in the number of people dying in hospice facilities. In hospice, an interdisciplinary team of professionals that specialize in end-of life-care address the whole person. They work to help manage pain and the person’s physical needs, as well as their mental and spiritual distress. Hospice also helps the family and coordinates care.
In 2003, 5,395 (.2%) died in hospice, in 2017, the number rose to 212,652 (8.3%).
The number of deaths at nursing homes also declined. In 2003, there were 538,817 (23.6%) deaths. In 2017, there were 534,714 (20.8%).
Patients with cancer had the greatest odds of dying at home or in hospice, the report said. People with dementia died more often at a nursing home, and stroke patients had the lowest odds of dying at home.
While an increasing number of people use hospice, other studies have shown that kind of care is underutilized. Medicare covers up to six months of hospice care, yet, most people only turn to hospice days, instead of months, before death, earlier studies found.
Deciding where to die
“I cannot emphasize enough the point of having these conversations, not just what kind of care you want in later stages of an illness, but also what the person’s thoughts are about where they want to be,” said Deborah Waldrop, a professor of social work at the University at Buffalo School of Social Work who studies end-of-life decision-making. Waldrop did not work on the new study.
She said this report is important because people often wait too long to have these conversations.
“Honestly, some of my worst moments in practice is when someone tells me ‘I don’t know what she wants, we never talked about it,'” Waldrop said.
If someone wants to die at home, it’s important that a caregiver feels the same way. Caring for the dying, even with hospice help, is physically and mentally difficult and not “all deaths are pretty,” Waldrop added.
“In this country, we have romanticized the notion of death at home. That is not to say it can’t be wonderful for the family and for the person they are caring for, but we often think about this as a loving time where people are singing and holding hands and praying, when in reality it is a very hard job,” Waldrop said.
She advises talking with a provider about what comes next. Knowing what will happen can help someone think through if they are able to provide that kind of care.
It’s also important to be mindful of little things, she said, like deciding where in the home someone will die. If you clear out the dining room table for the hospital bed, for example, what happens next Thanksgiving?
“People can work through it, but that memory doesn’t go away,” Waldrop said.
Support for caregivers
The report’s authors argue that the country needs to develop more policies and offer more services to ensure high-quality care for people who die at home.
Some states provide financial help for friends or family who care for someone who is dying, Waldrop said. Studies have shown that many people have to leave a job or retire early to provide this support, and that’s not financially feasible for many families.
A 2016 AARP study showed that family caregivers provide 37 billion hours of care worth an estimated $470 billion to their parents, spouses, partners and other adult loved ones.
“It is important to keep a promise to our loved one and if dying at home is what they want, we need to make sure they have the support that is needed,” Waldrop said. “Caregiving is a 24/7 job, and even with hospice, they cannot be there 24/7.
“It is important to decide what a person can realistically offer and to make sure there is no mismatch in what someone wants and what someone can provide.”