ATLANTA– Since Jimmy Carter entered hospice care at his south Georgia home a year ago, the former US president has celebrated his 99th birthday, paid tribute to his legacy and lost his wife of 77 years.
Rosalynn Carter, who died in November, about six months after the Carter family announced her dementia diagnosis, lived only a few days under hospice care, with her frail husband at her bedside.
Experts in end-of-life care say the Carters’ different journeys show the scope of an often misunderstood service. These advocates credit the Carter family for demonstrating the reality of aging, dementia and death. They express hope that the attention will prompt more Americans to seek services designed to help patients and families in the final stages of life.
“It was huge that the Carters were so public,” said Angela Novas, chief medical officer of the Hospice Foundation of America, based in Washington. “It has cast hospice in a new light, and it has raised questions” that people want to know more about.
The Carter family released a statement ahead of Sunday, the one-year anniversary of their announcement that the 39th president would forego future hospital stays and enter end-of-life care at home in Plains.
“President Carter remains home with his family,” the statement said. “The family is pleased that his decision last year to work in hospice has sparked so many family discussions across the country on 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 the health of even a vulnerable patient stabilizes.
Here’s a look at the hospice and the Carters’ circumstances:
Mollie Gurian is vice president of Leading Age, a national network of more than 5,000 nonprofit senior care organizations. She described hospice as “holistic care… for someone who is trying to live the end of life as fully as possible,” but is no longer seeking a cure for a terminal condition.
Hospice offers multiple practitioners for each patient: nurses, doctors and social service professionals such as chaplains and secular grief counselors. A home hospice offers home visits, but not 24-hour or even full-shift care.
Initial eligibility requires certification by a physician of a terminal condition, with the expectation that a person will live no more than six months; there are also disease-specific parameters.
For-profit or non-profit companies typically provide the care and employ the service providers. Medicare pays these agencies a daily rate for each patient. There are four levels of care and daily rates. The concept was developed after World War II and has been part of the Medicare program since the early 1980s. Private insurance plans also typically cover hospice.
According to the federal Medicare Payment Advisory Commission (MedPAC), 1.7 million Medicare beneficiaries enrolled in hospice in 2021 at a taxpayer expense of $23.1 billion. Nearly half of the Medicare patients who died that year did so under hospice care.
Hospice may conjure up images of “someone intoxicated and bedridden,” but it doesn’t provide “just enough morphine to get to the end,” Gurian said.
Patients give up curative treatments and many medications. Cancer patients no longer receive radiation or chemotherapy. Those with Alzheimer’s, Parkinson’s, or another late-stage degenerative neurological disease typically go off cholesterol and blood pressure medications—and ultimately medications that manage their acute condition.
But Novas and Gurian said treatment should be done on a case-by-case basis. Some agencies may allow someone with end-stage kidney disease to undergo dialysis or take prescription medications. They just have to bear the costs, because Medicare almost certainly doesn’t pay for those treatments separately.
In addition, hospice does not necessarily mean forgoing treatments for certain complications that compromise comfort: antibiotics for a urinary tract infection or infected bedsores, for example. That said, patients or families may forego such treatments, especially in cases of end-stage neurological disorders.
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 she was admitted to hospice care and died. In those cases, Novas explains, patients are given pain-relieving medications.
In 2021, the average stay for deceased hospice patients 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 care and when she died.
Approximately 10% of enrollees who die in hospice care stayed longer than 264 days. Extensive cases drive most of the costs. In 2021, $13.6 billion of the total $23 billion had been paid for stays longer than 180 days before death. Of this, $5 billion was intended for stays longer than one year.
Patients are sometimes discharged from hospice when their condition stabilizes, especially once they reach the six-month mark in the program. In 2021, 17.2% of patients were discharged. The MedPAC report to Congress noted that for-profit organizations have longer average lengths of stay than nonprofits and added that live patient discharge rates raise questions about eligibility standards.
Novas offered an explanation. She said the hospice has seen an increase in the number of patients with dementia, conditions where “a patient can wax and wane for months or even years.” Another factor – one she believes could explain Jimmy Carter’s staying power – is sheer grit.
“We cannot measure the human spirit,” she said. Under many circumstances, “someone who wants to be here will stick around for a while.”
Medicare does not include long-term care insurance, something 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 care burdens that hospitals don’t provide and that hospice doesn’t cover — or at least shouldn’t cover. For example, long-term care benefits could become a more common insured care route in some dementia cases.
In recent sessions, legislation has been introduced in Congress 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 fund a new benefit.
In addition, Gurian said Lead Age would like Congress to increase payment structures for hospices so that more agencies could admit patients and still cover certain treatments they now typically forego. For example, she said, some cancer patients might scale back cancer treatments as part of pain management, rather than abandoning treatment altogether and moving more quickly to heavy-duty drugs like morphine, which destroy quality of life.
Gurian said that too often, the U.S. health care system and society see only two choices for someone with a serious diagnosis: “fight” or “give up.”
“Hospice doesn’t give up,” she said, even if it means “accepting our mortality.”
Novas said Jimmy Carter has proven this distinction with his public announcements and, in November, with his determination to attend the funeral of Rosalynn Carter, physically impaired, reclining in a wheelchair, his legs covered with a blanket.
“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 he has to be aware of what he’s doing on some level. … Hospice is just a partner in that journey. But it is his journey.”
___ On the web: https://hospicefoundation.org/Ask-HFA