Jimmy Carter spent nearly 2 years in hospice. How the former president challenged common misconceptions about end-of-life care.

Former President Jimmy Carter, who died on Sunday in his hometown of Plains, Ga., had defied expectations since entering hospice care at his home in February 2023. Although homages began to roll in when Carter began end-of-life care at age 98, the longest-living U.S. president went on to live for nearly two more years and celebrated several milestones, including marking his 100th birthday on Oct. 1 and participating in his final presidential election by casting a vote for Kamala Harris.

While Carter's lengthy hospice experience may be unusual, experts say it's not unheard of.

“It is common for hospice patients to aspire to live long enough for landmark birthdays or family events,” Angela Novas, chief medical officer of the Hospice Foundation of America, who was not involved in Carter’s care, tells Yahoo Life, “and hospice care will do everything in its power to make sure you are present for those milestones.”

Carter’s story cast a new and perhaps more optimistic light on hospice — a phase of end-of-life care that many experts say is often misunderstood. Here’s what to know.

What is hospice care?

When Carter first entered hospice care, Yahoo Life spoke with Dr. Sunita Puri, program director of the Hospice and Palliative Medicine Fellowship program at the University of Massachusetts Chan Medical School and author of That Good Night: Life and Medicine in the Eleventh Hour. She said she likes to think of hospice as “intensive comfort-focused care” that’s “provided with the goal of minimizing the physical, emotional and spiritual suffering that patients and their families experience when somebody has six months or less to live.”

Most hospice care takes place at home, but it can also be provided at a nursing facility or a standalone hospice facility.

How long does hospice usually last?

Dr. Phillip Rodgers, a palliative care specialist and chair of the University of Michigan Department of Family Medicine, tells Yahoo Life that while hospice is available for at least the last six months of a person’s life, most people receive hospice for much shorter periods of time. According to the National Hospice and Palliative Care Organization, the median length of stay in hospice is 18 days, and 75% of hospice recipients receive fewer than 90 days — with even shorter stays among people in Black, Latinx and Indigenous communities.

“There are some individuals — like President Carter — who are enrolled in hospice for much longer, but they are few in number,” Rodgers says.

Carter’s wife, former first lady Rosalynn Carter, was in hospice care for only a few days before dying in November 2023.

Still, Dr. Kathleen Unroe, a research scientist at the Indiana University Center for Aging Research, points out that 10% of people are enrolled in hospice for more than 264 days.

And Novas says that while Carter’s hospice stay was longer than the typical hospice patient, his length of stay isn’t without precedent.

“Hospice admission requirements, which are based on the Medicare hospice benefit, require an anticipated prognosis of six months or less — meaning that doctors must believe you will die within six months if your disease runs its anticipated course. But nobody can predict that with 100% certainty,” she says. “If hospice patients outlive their initial six-month hospice benefit period, they can continue to receive care so long as the hospice medical team determines that eligibility requirements are met.”

Dr. R. Sean Morrison, chair for the Brookdale Department of Geriatrics and Palliative Medicine at the Icahn School of Medicine at Mount Sinai, tells Yahoo Life that one reason hospice stays are often shorter is that it can be hard for people to admit that it’s time to start that next phase of care.

“People are afraid of hospice and what that means — that if you're entering hospice, then there's a recognition that you're dying,” he says. “And that can be very, very difficult for both patients and physicians.”

What people get wrong about hospice care

In addition to length of stay, experts say there's a lot that people get wrong about hospice care.

• Myth 1: Hospice is for people who have “given up.” A top misconception that people have about hospice, according to end-of-life experts, is that it means people have “given up” on their own care or their loved one’s care. “In fact, hospice is very often the opposite, and actually increases the amount of care and support available, especially for patients living at home or in home-like settings such as independent and assisted living,” Rodgers says.

• Myth 2: Hospice care is for people with days to live. As Carter demonstrated, patients may have weeks or months to live.

• Myth 3: Hospice care involves 24/7 bedside care by medical professionals. In fact, “the bulk of the day-to-day caregiving responsibilities remain with the family [or] private caregivers or nursing home staff,” Novas explains. Morrison adds that one of the biggest misconceptions he hears is that hospice is a place as opposed to a form of care. “[People think] that when they go on hospice, they're going to go into a building to die. And the reality is, overwhelmingly, by statute, 80% of care in hospice has to be delivered in a home,” he says.

• Myth 4: Hospice accelerates the dying process. Hospice care doesn’t involve life-prolonging therapies or aggressive treatment, but “the hospice philosophy is to provide comfort and compassionate care for people living with terminal illness, for however long that may be,” Novas says.

• Myth 5: Hospice is only for cancer patients. Novas says hospice care is for people “with a wide range of diagnoses.”

Novas adds that Carter’s public disclosure about beginning hospice care ignited conversations about end-of-life care — and helped dispel some of those persistent myths.

“As a nation, we watched him attend his wife Rosalynn’s funeral and participate in other events, all while receiving hospice care,” Novas says. “Mr. Carter has played a large role in helping dispel the myth that hospice is only for people whose death is imminent. What he has done to raise awareness of hospice care will undoubtedly be part of his legacy.”

This article was originally published on Aug. 9, 2024, and has been updated.