The type of in-home hospice care former President Jimmy Carter is receiving is actually typical for people in the United States
Most people receive hospice care in their home, and it is covered fully by Medicare
People often access hospice care too late -- 50% of people spend 18 days or less in hospice before they pass
FRIDAY, Sept. 29, 2023 (HealthDay News) -- Former President Jimmy Carter turned quite a few heads last week when he made a surprise visit to the Plains Peanut Festival in Georgia.
Carter, who turns 99 on Sunday, decided back in February “to spend his remaining time at home with his family and receive hospice care instead of additional medical intervention,” according to an announcement made at the time by the Carter Center.
But instead of languishing at home, Carter and his wife, Rosalynn, 96, rode through the Peanut Festival in a black SUV, taking in the scene as spectators took photos and waved at them.
The Carters’ visit to a treasured annual event is really the essence of hospice care -- the ability for a person to fully enjoy the remaining time they have, said Larry Atkins, chief policy officer for the National Partnership for Healthcare and Hospice Innovation.
“You don't have to be lying in a bed necessarily to be able to benefit from hospice,” Atkins said. “And I think it's wonderful that the Carters have made such a great example of people with such great dignity who make that decision in their life that they're ready to go, that they don't want to continue with further invasive treatment and they elect to go into hospice as a supportive system.
“Originally, I think there were people who felt that it was kind of a death sentence to elect hospice,” Atkins added. “But actually, you can see with the president, everybody has their own path through it.”
The facts on hospice care
There are many common misconceptions about hospice care in the United States, starting with the notion that people must stay in a special facility to receive such end-of-life care, experts say.
Nearly 700,000 Medicare patients died at home while receiving hospice care in 2020, according to a 2022 report to Congress by the Medicare Payment Advisory Commission.
That’s more than all other locations for hospice care combined -- nursing facilities (233,000), assisted living facilities (150,000), hospice facilities (126,000) and hospitals (96,000).
“Hospice is overwhelmingly in the United States delivered at a patient's home, like President Carter,” said Dr. Sean Morrison, chair of geriatrics and palliative medicine at Mount Sinai in New York City. “The goal is to focus on improving the person's quality of life as they're dying or in the state of a terminal illness.”
This misconception likely is fueled by the fact that in many other countries hospice care is delivered in facilities specifically designated for end-of-life care, Morrison said.
Carter entered hospice care after enduring a series of health crises that included a bout with melanoma that spread to his liver and his brain. More recently, he has had a series of short hospital stays that led to his decision to enter hospice.
Carter is receiving hospice care at home, where his family is making plans for his 99th birthday this weekend.
Carter and his wife, who have been married 77 years, are “still holding hands,” grandson Josh Carter told the New York Times. “They still sit on the couch together, in the same place they’ve always sat.”
“They still have a house full of love, and a house full of family,” he said. “And that’s how they wanted it to be.”
Not just for the rich
Another false impression is that hospice care is a pricey benefit available only for the well-to-do.
Hospice became a specific Medicare benefit in the early 1980s, and is fully covered by the federal health plan, Atkins and Morrison said. Private insurers have followed that lead, and most cover hospice care.
“It's part of Medicare. They've paid for it all their lives. It provides a constellation of services that can be incredibly beneficial both to patients and families,” Morrison said.
A person can choose to enter hospice care if they have a terminal illness and a prognosis that they have six months or less to live, Atkins and Morrison said. Two doctors have to agree to that prognosis.
A person entering hospice care agrees to forgo medical treatment, in favor of therapy aimed at easing their pain and preparing them and their families for the end, experts said.
“The idea is that you when you come into hospice, you're no longer going to get a lot of aggressive chemotherapy or other kinds of aggressive treatment to continue to prolong your life, but that you'll kind of forgo that treatment and go into hospice for its supportive environment and be ready to die in that context,” Atkins said.
About 19% of people who die in hospice are suffering from Alzheimer’s disease, dementia or Parkinson’s disease, according to a 2022 report from the National Hospice and Palliative Care Organization (NHPCO).
About 9% are heart patients, 8% are cancer patients, 6% are suffering from a respiratory disease and 5% have had a stroke.
A person’s hospice care team will include a wide variety of caregivers – doctors, nurses, counselors, therapists, social workers and volunteers.
Don't wait too long for hospice
But it won’t include 24/7 care from a live-in nurse.
“It is not around-the-clock personal care attendant service,” Atkins said. “If a person is living at home, they need to have some kind of caregiver in place, a family caregiver or some other kind of caregiver who is there to meet their needs, depending on what their functional level is and what their frailty is.”
Instead, hospice care workers drop by regularly to check in on the patient and their family, the experts said.
“Typically a hospice nurse visits regularly, usually about once a week, although certainly more frequently if somebody needs it,” Morrison said. “And it can provide up to four hours per day, typically 20 hours per week, of a home health aide.”
It’s also a misconception that once a person’s in hospice, they remain in hospice until the end.
“It's not like you're signing up for something that you can't change,” Morrison said. “If you enroll in hospice and decide it's not for me or this is really not what I thought, you can easily dis-enroll and just move straight back into Medicare.”
On the other hand, if a person lives longer than six months, they will continue to receive hospice care, the experts said. For example, Carter will enter his eight month in hospice next month.
“Everybody's path is very different and the pathways are very different for people who are diagnosed with different illnesses,” Atkins said. “In a lot of cases, the prognosis isn't necessarily that accurate.”
In fact, about 15% of people wind up “graduating” from hospice, going back to their regular Medicare benefits after their disease stabilizes and their prognosis improves, according to the 2022 Medicare Payment Advisory Commission report.
Unfortunately, many people wind up choosing hospice care too late to receive its full benefits, experts said.
About 50% of patients receive 18 days or fewer of hospice care before they pass, the NHPCO report said. Only 10% remained in hospice for more than 287 days -- nearly 10 months.
“Too often, people don't get to access the support that hospice provides that would allow them to do the things that [former] President Carter is doing, just because it happens too late in the course of illness,” Morrison said.
HealthDay has more about hospice care.
SOURCES: Larry Atkins, PhD, chief policy officer, National Partnership for Healthcare and Hospice Innovation; Sean Morrison, MD, chair, geriatrics and palliative medicine, Mount Sinai, New York City
Hospice care is most often provided in a person’s home, and is fully covered by Medicare.