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End-of-life advocates and experts cite Carter’s stay in hospice as having a positive impact on the discourse of end-of-life care. Northeastern University experts say many people put off hospice care until it’s too late.
Last month, former President Jimmy Carter marked one year in hospice. After entering end-of-life care in February 2023, he celebrated his 99th birthday and grieved the death of his wife of 77 years and former first lady, Rosalynn Carter.
Even then, Carter was able — with help — to attend her funeral.
Even at the end of life, the nation’s longest-living president — someone who “practically no one ever thought” would be elected president, writes the New York Times’ Peter Baker — is defying the odds.
According to the National Institutes of Health, more than 90% of patients who enter hospice care die within the first six months. Roughly 36% of patients die within a week of entering hospice.
End-of-life advocates and experts cite Carter’s stay in hospice as having a positive impact on the discourse surrounding end-of-life care. Northeastern University experts say many people put off hospice care until it’s too late.
“The thing about hospice care is that it’s generally underutilized,” says Carla Bouwmeester, clinical professor of pharmacy and health systems science. “When you think about the services that are offered, if you’re waiting until the very last few weeks of life to focus on quality of life, symptom control, pain relief — sometimes I see cases and think, ‘There are real missed opportunities here.’”
It’s unclear just how well Carter is faring after more than a year in hospice; he survived metastatic brain cancer and liver cancer, and recovered from brain surgery in 2019.
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A statement released by the family last month didn’t provide too much detail on the former president’s condition.
“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.”
Bouwmeester says there are many factors that can impact how long a patient can survive while in hospice. Sometimes a patient’s health can stabilize due to changes in care, such as changes in medication or fewer invasive procedures.
“Depending on the condition, some are much more difficult to offer prognoses,” she says. “With any type of prognostication, you always have outliers. We have some better data for oncology versus some other conditions. With dementia, for example, it may be more difficult to gauge.”
Bouwmeester says the primary purpose of hospice care is to help maintain the patient’s quality of life, while reducing symptoms and managing pain.
“It’s a shift from curative care — so you’re no longer trying to cure that illness or condition that qualifies you for hospice care — to symptom control and management,” she says
In order for a person to qualify for hospice care, they must be terminally ill with a prognosis of less than six months or less to live. Usually a primary care provider or a specialist initiates the certification process, and a hospice physician also needs to sign off on the transfer. If the patient lives past six months, the medical professionals would need to recertify the patient for continued care.
Hospice care teams often wean patients off of medications intended to prolong life — a process that’s called “de-prescribing” — to focus on controlling symptoms and pain.
“There’s a change in focus, and that’s why some people who are at end-of-life will decide that they do not want hospice, because they want to pursue what they can to potentially extend their life,” Bouwmeester says.
In addition to looking after a patient’s physical health, hospice care teams also focus on caring for their “psychosocial-spiritual” well-being. Such teams typically comprise a physician, nurse, social worker and potentially home health aides, as well as chaplains or spiritual advisers, Bouwmeester says.