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ATLANTA (AP) – Since Jimmy Carter entered hospice care A year ago, the former US President celebrated his birthday at his home in South Georgia 99th birthdayenjoyed Homage Due to his inheritance he lost his wife of 77 years.
Rosalyn Carterwho died in November, about six months after the Carter family disclosed dementia diagnosisStayed with him only for a few days under hospice care weak husband at her bedside,
End-of-life care experts say the Carters’ differing paths show the limits of one An often misunderstood service, Those attorneys commend the Carter family for demonstrating the realities of aging, dementia and death. They hope this attention will inspire more Americans to seek services aimed at helping patients and families in the later stages of life.
“It’s huge for the Carters to be so public,” said Angela Novas, chief medical officer of the Washington-based Hospice Foundation of America. “It’s put hospice in a new light, and it’s raised questions” for people to learn more.
The Carter family released a statement ahead of Sunday, the one-year anniversary of their announcement that the 39th president would avoid future hospital stays and receive end-of-life care at home in the Plains.
“President Carter remains at home with his family,” the statement said. “The family is pleased that their decision to enter hospice care last year has sparked many family discussions across the country on an important topic.”
Apparently, the family has not confirmed whether Jimmy Carter is in hospital care or has been released, as sometimes happens when even a vulnerable patient’s health stabilizes.
Here’s a look at Dharamsala and the Carters’ circumstances:
Dharamshala serves everyone, even the rich and powerful
Molly Gurian is vice president of Leading Age, a national network of more than 5,000 nonprofit elder-care agencies. He described hospice as “holistic care … for someone who is trying to live the end of their life as fully as possible” but is no longer seeking treatment for a terminal condition. Used to be.
Hospice offers multiple practitioners for each patient: nurses, physicians, and social-service professionals such as clergy and secular grief counselors. Home hospice provides home visits but does not provide round-the-clock or full-shift care.
Initial eligibility requires certification of terminal status by a physician, with the expectation that a person will survive no more than six months; There are also disease-specific parameters.
For-profit businesses or nonprofit agencies usually provide care and employ providers. Medicare pays those agencies a per diem rate for each patient. There are four levels of care and daily rates. This concept was developed after World War II and has been part of the Medicare program since the early 1980s. Private insurance plans usually cover hospice as well.
In 2021, 1.7 million Medicare beneficiaries enrolled in hospice, at a taxpayer cost of $23.1 billion, according to the federal Medicare Payment Advisory Commission (MedPAC). Nearly half of the Medicare patients who died that year died under hospice care.
FILE – Former President Jimmy Carter after attending the funeral of his wife, former first lady Rosalynn Carter, on November 29, 2023 in Plains, Ga. Moved to Maranatha Baptist Church. In the year that Jimmy Carter first entered home hospice care, the 39th president celebrated his 99th birthday, paying tribute to his legacy and outliving his wife of 77 years. Rosalynn Carter, who died in November after suffering from dementia, spent only a few days in the hospice. (AP Photo/John Bazemore, File)
Hospice is more than the ‘morphine myth’
The hospice may receive images of “someone intoxicated and lying in bed,” Gurian said, but it “just isn’t providing enough morphine to get to the end.”
In fact, patients abandon curative treatments and many medications. Cancer patients will no longer receive radiation or chemotherapy. People suffering from end-stage Alzheimer’s, Parkinson’s or another degenerative neurological disease typically stop taking cholesterol and blood pressure medications — and eventually stop taking medications that control their serious conditions.
But Novas and Gurian said treatment is case-by-case. Some agencies may allow someone with end-stage kidney disease to undergo dialysis or take prescription medications. They just have to cover the cost, because Medicare certainly doesn’t pay for those treatments separately.
Furthermore, hospice does not mean forgoing treatment for certain complications that threaten comfort: for example, antibiotics for urinary tract infections or infected bed sores. That said, patients or families may opt out of 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 hospitalization and death. In those cases, patients are given pain management medications, Novas said.
FILE – Former President Jimmy Carter teaches a Sunday school class at Maranatha Baptist Church in his hometown in Plains, Ghaziabad, on August 23, 2015. In the year since Jimmy Carter first entered home hospice care, the 39th president has celebrated his 99th birthday, his legacy honored and his wife outlived him by 77 years. Rosalynn Carter, who died in November 2023 after suffering from dementia, spent only a few days in hospice. (AP Photo/David Goldman, File)
Jimmy Carter’s patience is not unusual
In 2021, the average hospital stay of patients who died was 92 days, according to Medpac’s calculations. The median was 17 days – about two weeks more than the time between announcements by the Carters and former first ladies. entered hospice And when she died.
About 10% of enrolled people who died remained in hospice care for more than 264 days. Extended cases drive up most of the cost. In 2021, $13.6 billion of the total $23 billion paid were for people who lived more than 180 days before death. Of that, $5 billion was meant to last more than a year.
Patients are sometimes discharged from the hospital if their condition stabilizes, especially if they have reached the six-month mark in the program. 17.2% patients were discharged in 2021. The MedPAC report to Congress notes that the average length of stay in for-profit agencies is longer than that of non-profits and adds that discharge rates of surviving patients raise questions about admission standards.
Novas offered an explanation. He said the hospice has seen an increase in patients with dementia, a condition in which “a patient can deteriorate over months or years.” Another factor – which he said could explain Jimmy Carter’s patience – is sheer patience.
“We cannot measure the human spirit,” he said. With several conditions, “Whoever wants to stay here must stay here for a period of time.”
FILE – Former President Jimmy Carter, right, and his wife, former first lady Rosalynn Carter, hold hands as they walk from the state funeral of former President George H.W. Bush at the National Cathedral on December 5, 2018 in Washington. The year Jimmy Carter first entered home hospice care, the 39th president celebrated his 99th birthday, paying tribute to his legacy and outliving his wife of 77 years. Rosalynn Carter, who died in November 2023 after suffering from dementia, spent only a few days in hospice. (AP Photo/Caroline Castor, File)
Advocates want change and expansion
Medicare does not include a long-term care insurance provision, something Leading Edge and other advocates argue America needs, especially as the baby boomer generation ages.
Such care, he said, would help patients and families shoulder the significant burden of care that hospitals don’t provide and that hospice doesn’t cover — or at least shouldn’t. Long-term care benefits, for example, may become a more common route to insured care in some dementia cases.
Legislation has been introduced in Congress in recent sessions to create long-term care plans under Medicare. But this is politically difficult, if not impossible, because it would require increasing payroll taxes to finance a new benefit.
Separately, Gurian said Leading Edge would like Congress to expand hospice payment structures so more agencies can accept patients and still cover some treatments they typically forego. For example, he said some cancer patients may gradually reduce cancer treatments as part of pain management rather than abandoning them altogether and move quickly toward heavier drugs like morphine that can be life-threatening. destroys quality.
Jimmy Carter is still teaching lessons
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 giving up,” she said, even if it means “accepting our mortality.”
Novas said Jimmy Carter has proven those differences with his public pronouncements and his determination to attend Rosalynn Carter’s funeral in November, physically frail, lying in a wheelchair, her legs covered with a blanket. Had happened.
“That was such an important moment, for the world to see what 99 looks like,” Novas said, “even for a former president.” “He still has lessons for us. I think, on some level, he must know what he’s doing. …Hospice is just a partner in that journey. But this is their journey.”
___ on the web: https://hospicefoundation.org/Ask-HFA
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