Jimmy Carter marks one year in hospice care

One year ago today, former President Jimmy Carter entered home hospice care in Plains, Georgia, at the age of 98. Now, at 99, he remains the oldest American president. End-of-life care experts hope his resilience will raise awareness and hope for others in the same boat.

On February 18, 2023, the Carter Center announced that the 39th President of the United States “decided to spend his remaining time at home with his family and receive palliative care in lieu of additional medical intervention.”

Hospice is defined as the care of patients with terminal illnesses. According to the American Academy of Palliative Medicine and Hospice, people enter hospice care if they likely have six months or less to live. The priority is not to provide additional treatment, but to reduce pain and discomfort towards the end of life.

But Jimmy Carter has proven himself to be a soldier. Twelve months and a beautiful birthday celebration later, it’s still going strong.

Seven months after receiving hospice care at home, Jimmy and his wife, former first lady Rosalynn Carter, made their first public appearance since the announcement. The two lovebirds were seen participating in the Peanut Festival in their hometown of Plains.

Two months later, the Carter Center announced that Rosalynn had placed herself in home palliative care. A week later, Carter attended her funeral at her local church, Maranatha Baptist Church.

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

“President Carter remains 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 about an important issue.”

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 fragile patient’s health stabilizes.

“It’s been huge that the Carters have been so public,” said Angela Novas, medical director of the Washington-based Hospice Foundation of America. “She has shed new light on palliative care and raised questions” so people learn more.

When is hospice called?

Over the past 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, more than 1.7 million people enrolled in palliative care in 2021, now including former President Jimmy Carter.

“Too often people wait up to two or three days before the person dies to receive hospice care, and they’ve missed out on a lot of what’s available,” said Dr. Lane Mathis Price, former medical director of Albany Community Hospice.

“This doesn’t mean you’re about to die, it means you want to live as long as you have to live with your own goals in sight, you want to be able to do what you want and where you want, usually at home and with whom you want to do it,” he added.

Dr Price said the initial admission to palliative care is for six months, but can be extended.

“Although there is always another medication available or another operation or some more radiation. They may be tired and ready to be home. They may want to do something as simple as go to the beach. They may want to go to fish,” he explained.

Dr. Price grew up not far from Jimmy Carter. His brother was roommates with him at the Naval Academy. She said she is grateful that the former president’s decision to enter hospice has raised so much awareness about specialized care across the country.

“Maybe it’s another good thing coming out of Plains, Georgia,” Dr. Price said.

“Here’s this peanut farmer from South Georgia who’s influencing people everywhere,” he added.

She also emphasized that palliative care is not just there for the patient but also for their families, offering bereavement support to families for 13 months after the death of their loved one.

FOX 5 Atlanta Reporter Kim Leoffler contributed to this report.

Can someone be in hospice care for years?

In 2021, the average length of stay for 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 that the former first lady had entered the hospice and when she died.

About 10% of members who die in palliative care stayed longer than 264 days. Protracted cases generate the most costs. In 2021, $13.6 billion of the total $23 billion paid was for stays longer than 180 days before death. Of them, 5,000 million dollars were for stays longer than one year.

Sometimes patients are discharged from hospice if their condition stabilizes, especially if they have completed six months in the program. In 2021, 17.2% of patients were discharged. MedPAC’s report to Congress noted that for-profit agencies have a higher average length of stay than nonprofits and added that live discharge rates raise questions about admission standards.

Novas offered explanations. He said palliative care has seen an increase in patients with dementia, conditions in which “a patient can be up and down for months or even years.” Another factor, which she says could explain Jimmy Carter’s resistance, is his determination.

“We can’t measure the human spirit,” he said. With many conditions, “whoever wants to be here will stay a while longer.”

What exactly does hospice do?

Palliative care may conjure up images of “someone high and bedridden,” but it’s not simply about “providing enough morphine to see you through,” said Mollie Gurian, vice president of Leading Age, a national network of more than 5,000 people. non-profit majors. -care agencies.

In fact, patients abandon curative treatments and many medications. Cancer patients no longer receive radiation or chemotherapy. Those with Alzheimer’s, Parkinson’s, or other late-stage degenerative neurological disease typically abandon cholesterol and blood pressure medications and, eventually, medications that regulate their acute condition.

But Novas and Gurian said treatment is on a case-by-case basis. Some agencies may allow someone with end-stage renal disease to receive dialysis or take prescribed medications. They simply have to absorb the cost, because Medicare almost certainly does not pay separately for those treatments.

Furthermore, palliative care does not necessarily mean forgoing treatments for certain complications that threaten comfort: antibiotics for a urinary tract infection or infected sores, for example. That said, patients or their families may forego 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 these cases, Novas explained, patients are given medications to control the pain.

Palliative Care Advocates Hope Jimmy Carter’s Resilience Fosters Hope

Gurian said the American health care system and American society too often see only two options for someone with a serious diagnosis: “fight” or “give up.”

“Hospice is not about giving up,” he said, even if that means “accepting our mortality.”

Novas said Jimmy Carter has demonstrated those distinctions with his public announcements and, in November, his determination to attend the funeral of Rosalynn Carter, physically handicapped, reclining in a wheelchair and with her legs covered by a blanket.

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

“That was a very important moment,” Novas said, for the world to “see what ’99 is like,” even for a former president. “He still has lessons for us. I think, on some level, he should be aware of what he’s doing… Hospice is just a companion on that journey. But it’s his journey.”

Advocates hope for change and expansion of Medicare

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

That kind of care, he said, would help patients and their families absorb significant care burdens that hospitals don’t provide and that palliative care doesn’t cover, or at least shouldn’t cover. A long-term care benefit, for example, could become a more common avenue of insured care in some cases of dementia.

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 requires an increase in payroll taxes to finance a new benefit.

Separately, Gurian said Leading Age would like to see Congress increase palliative care payment structures so that more agencies could admit patients and continue to cover certain treatments they now typically forgo. For example, she said some cancer patients might reduce cancer treatments as part of pain management instead of abandoning treatment altogether and moving more quickly toward heavy medications like morphine, which eliminate quality of life.

Associated Press reporter Bill Barrow contributed to this report.