Jimmy Carter marks one year in hospice care | How he did it

A year ago today, former President Jimmy Carter entered home hospice care in Plains, Georgia at 98 years old. Now at 99, he remains the longest-lived American president. Experts on end-of-life care hope his endurance drives awareness and hope for others in the same boat.

On Feb. 18, 2023, the Carter Center announced the 39th President of the United States "decided to spend his remaining time at home with his family and receive hospice care instead of additional medical intervention."

Hospice is defined as care for terminally ill patients. According to the American Academy of Hospice and Palliative Medicine, people enter hospice care if they are likely to have six months or less to live. The priority is not to provide further treatment, but to reduce pain and discomfort toward the end of life.

But, Jimmy Carter has proved to be a trooper. Twelve months and a beautiful birthday celebration later, he remains solid.

Seven months into home hospice care, Jimmy and his wife, former first lady Rosalynn Carter, made their first public appearance since the announcement. The two lovebirds were spotted taking part in the Peanut Festival in their hometown of Plains. 

Two months later, the Carter Center announced Rosalynn had entered home hospice care herself. A week later, Carter attended her funeral at their home church, Maranatha Baptist Church.

Ahead of Sunday, the one-year anniversary of the announcement, Carter's family released a statement:

"President Carter continues to be at home with his family," the statement said. "The family is pleased that his decision last year to enter hospice care has sparked so many family discussions across the country on an important subject."

To be clear, the family has not confirmed whether Jimmy Carter remains in hospice care or has been discharged, as sometimes happens when even a frail patient’s health stabilizes.

"It’s been massive to have the Carters be so public," said Angela Novas, chief medical officer for the Hospice Foundation of America, based in Washington. "It has shed hospice in a new light, and it’s raised questions" for people to learn more.

When is hospice called in?

Over the course of the last year, news of President Jimmy Carter entering hospice care has sparked conversations about hospice in families across the country.

According to the latest data from the National Hospice and Palliative Care Organization, over 1.7 million people were enrolled in hospice in 2021, which now includes former President Jimmy Carter.

"So often people wait until two or three days before the person does die to go into hospice care, and they've missed so much that is available," Dr. Lane Mathis Price, former medical director with Albany Community Hospice, said.

"This doesn't mean that you're about to die it means that you are wanting to live however long you have to live with your own goals in sight you want to be able to do what you want to do where you want to do it usually at home and with whom you want to do it," she added.

Dr. Price said the initial admission in hospice is for six months, but that can be extended.

"Although there's always another drug out there or another operation or some more radiation. They may be tired, and they're ready to be at home. They may want to do something as simple as go to the beach. They may want to go fishing," she explained.

Dr. Price grew up not far from Jimmy Carter. Her brother was roommates with him at the Naval Academy. She said she's thankful the former president's decision to enter hospice has sparked so much awareness about the specialized care nationwide.

"Maybe just one more good thing that's coming out of Plains, Georgia," Dr. Price said.

"Here's this peanut farmer from South Georgia who is having an influence on people everywhere," she added.

She also stressed hospice isn't there just for the patient but for their families as well, offering bereavement support for families for 13 months after their loved one passes.

FOX 5 Atlanta reporter Kim Leoffler contributed to this report.

Can someone be in hospice for years?

In 2021, the average stay of hospice patients who died was 92 days, MedPAC calculated. The median was 17 days — about two weeks longer than the time between when the Carters’ announced the former first lady had entered hospice and when she died.

About 10% of enrollees who die in hospice care stayed more than 264 days. Extended cases drive a majority of costs. In 2021, $13.6 billion of the overall $23 billion paid was for stays exceeding 180 days before death. Of that, $5 billion was for stays longer than a year.

Patients are sometimes discharged from hospice if their condition stabilizes, especially if they have reached the six-month mark in the program. In 2021, 17.2% of the patients were discharged. The MedPAC report to Congress noted that for-profit agencies have higher average length of stays than nonprofits and added that living patients’ discharge rates raise questions about admission standards.

Novas offered explanations. She said hospice has seen an uptick in patients with dementia, conditions in which "a patient can wax and wane for months or even years." Another factor — one she said could explain Jimmy Carter’s endurance — is sheer grit.

"We cannot measure the human spirit," she said. With many conditions, "somebody who wants to be here is going to stick around for a while."

What exactly does hospice do?

Hospice can elicit images of "someone doped up and bedridden," but it is not "just providing enough morphine to make it through the end," said Mollie Gurian, the vice president of Leading Age, a national network of more than 5,000 nonprofit elder-care agencies.

Indeed, patients give up curative treatments and many medicines. Cancer patients no longer receive radiation or chemotherapy. Those with late-stage Alzheimer’s, Parkinson’s or another degenerative neurological disease typically ditch cholesterol and blood-pressure medication — and eventually drugs that regulate their acute condition.

But Novas and Gurian said treatment is case-by-case. Some agencies might allow someone with end-stage kidney disease to get dialysis or take regulatory medication. They simply have to absorb the cost, because Medicare almost certainly does not pay separately for those treatments.

Further, hospice does not necessarily mean forgoing treatments for certain complications that threaten comfort: antibiotics for a urinary tract infection or infected bed sores, for example. That said, patients or families may forgo such treatments, especially in cases of end-stage neurological disease.

Chip Carter, one of Jimmy and Rosalynn Carter’s four children, confirmed to The Washington Post that his mother was suffering from a severe urinary tract infection at the time of her hospice admission and death. In those cases, Novas explained, patients are administered pain management drugs.

Hospice care advocates hope Jimmy Carter's endurance encourages hope

Gurian said the U.S. health care system and American society too often see just two choices for someone with a grave diagnosis: "fighting" or "giving up."

"Hospice is not giving up," she said, even if it means "accepting our mortality."

Novas said Jimmy Carter has proven those distinctions with his public announcements and, in November, his determination to attend Rosalynn Carter’s funeral, physically diminished, reclined in a wheelchair, his legs covered in a blanket.

RELATED: Jimmy Carter covered by blanket paying tribute to Rosalynn Carter during Atlanta service

"That was such an important moment," Novas said, for the world to "see what 99 looks like," even for a former president. "He still has lessons for us. I think, on some level, he must be aware of what he’s doing. ... Hospice is just a partner in that journey. But it’s his journey."

Advocates hope for change, expansion in Medicare

Medicare does not include a long-term care insurance provision, something that Leading Age and other advocates argue the U.S. needs, especially as the Baby Boomer generation ages.

That kind of care, she said, would help patients and families absorb significant burdens of care that hospitals do not provide and that hospice does not cover — or at least should not cover. A long-term care benefit, for example, could become a more common route of insured care in some dementia cases.

Legislation has been introduced in Congress in recent sessions to create a long-term care plan under Medicare. But it is politically difficult, if not impossible, because it calls for an increase in payroll taxes to finance a new benefit.

Separately, Gurian said Leading Age would like Congress to increase hospice payments structures so more agencies might admit patients and still cover certain treatments they now typically forgo. For example, she said some cancer patients could ratchet down cancer treatments as part of pain management rather than give up treatment altogether and advance more rapidly to heavy drugs like morphine that eliminate quality of life.

The Associated Press reporter Bill Barrow contributed to this report.

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