1 of 3 | Former President Jimmy Carter leaves after the funeral service for former first lady Rosalynn Carter at Maranatha Baptist Church in November. 29, 2023, in Plains, Ga. The former first lady was 96 years old. Pool photo by Alex Brandon/UPI | License photo
NEW YORK, June 24 (UPI) — Former President Jimmy Carter’s 16-month hospice stay makes it an “extraordinary,” but also highlights the multifaceted nature of end-of-life care and dispels myths about that care, experts told UPI.
Carter, who will turn 100 in October, entered hospice in February 2023 after deciding to stop aggressive treatment for metastatic melanoma.
Regardless of his decision, his survival with the disease for more than 5 years, at his advanced age, should be considered a success, said Dr. Joan Teno, a former hospice provider and an expert in geriatric care.
“President Carter is exceptional in that only a small percentage of hospice patients survive more than 15 months,” she told UPI in an email. “The fact that he has lived so long in the hospice is a testament to his excellent medical care at home and, if I had to guess, his will to live.”
It also illustrates hospice’s primary focus, which is typically directed at people with a life expectancy of 6 months or less, for whom curing their underlying illness is not an option, Teno added.
The approach emphasizes symptom management — mostly pain — and quality of life, according to the Hospice Foundation of America.
“While the Hospice Foundation of America has worked for more than 40 years to educate people about the many benefits of hospice care, most Americans do not engage in advance care planning and know little about end-of-life care options,” Angela Novas. the organization’s top medical official told UPI via email.
“Because of this, there is a lot of confusion and misunderstanding about what hospice is, the care it provides, who qualifies and how to access care,” she said.
Defying the odds
More than 90% of patients who enter hospice care die within the first six months, and nearly 40% die within the first week, according to the National Institutes of Health.
However, since entering the hospice, Carter has celebrated his 99th birthday and mourned the death of his 77-year-old wife, former first lady Rosalynn Carter, and was even able, with her help, to attend at her funeral.
“I suspect that President Carter is following the trajectory of the disease [metastatic melanoma, which leads to] progressive frailty, where he needs assistance in his daily functions and uses a wheelchair,” said Teno, who has no direct knowledge of his health condition.
Citing recent interviews with family members, the former president likely spends most days sleeping, she said.
In general, hospice patients who are “not alert and sleep more” are closer to death, said Teno, who is also an assistant professor of health services, policy and practice at Brown University’s School of Public Health.
“About two thirds of [these patients] I drift quietly to sleep [as they die] “I suspect that’s what’s going on,” she added.
What does end-of-life care involve?
The nuts and bolts of hospice vary by patient, but most providers adhere to Medicare guidelines and engage a multidisciplinary team of health professionals trained to address the physical, psychosocial, and spiritual needs of terminally ill patients.
They also provide support to family members and other “intimate, unpaid” caregivers, according to the Hospice Foundation of America.
Teams typically include a hospice physician, nurse, medical social worker, home health aide and, if applicable, chaplain and/or spiritual counselor, the foundation says.
Services include medications to control symptoms, including pain relief, medical equipment, such as a hospital bed, wheelchair or walker, and supplies, such as oxygen, bandages, and catheters, as needed.
Many hospice patients receive physical and occupational therapy to maintain strength and mobility, as well as speech-language pathology services so they can continue to communicate.
They also receive dietary counseling, which dispels “one of the most unhelpful myths” about hospice care that providers “restrict food and fluids or refuse to treat illnesses, such as an infection, that may occur during hospice care for accelerate the death process,” said the foundation’s Novas.
“That’s just not true,” she said.
In some cases, “as part of the natural dying process, appetite is greatly reduced and patients often either refuse food and liquids or can no longer swallow safely without coughing and choking or aspirating food and liquids into the lungs, resulting in pneumonia ,” Novas said. .
However, as long as patients like Carter can tolerate food and liquids and find eating enjoyable, they are usually offered small portions of their favorite meals when they ask, she added.
“At the end of life, hospice and family caregivers usually go with the flow of the day, which is dictated by how the hospice patient is doing,” Novas said.
“It is likely that Mr. Carter will have good days and bad days of waxing and waning of symptoms and abilities,” she added.
Although she doesn’t know specifics about the former president’s daily routine, on bad days, he may sleep most of the day with little interaction with family or caregivers and with a poor appetite, on good days, he may be alert, looking for food. and be able to get out of bed and be engaged in life, Novas said,
“We’ve seen a lot of pictures of him during his time in hospice doing just that, and the hospice that provides his care is very focused on helping those opportunities,” she said.
“Many hospice patients enjoy these good days or hours reminiscing with family and friends, reading, watching their favorite movies or TV shows, or enjoying music,” she added.
Hospice means home
Being in hospice means Carter and others like him facing terminal illnesses are able to stay at home, in comfort, surrounded by loved ones, according to the Hospice Foundation of America.
The service is primarily provided in the patient’s home, whether it is a private residence, nursing home or community living arrangement, he says.
Hospice practitioners believe that being at home is best for people at the end of life, both for reasons of comfort and to reduce the risk of hospital-acquired infections, which can add to suffering and reduce life expectancy, said New.
However, hospice providers are available 24 hours a day, seven days a week to respond if a patient needs care.
Most hospice patients are eligible for Medicare, which covers all aspects of end-of-life care, and Medicaid provides similar coverage, according to the Hospice Foundation of America.
In addition, many commercial health insurance plans offer a hospice benefit, but the extent to which they cover care and services can vary.
“Certainly, Mr. Carter’s choice to choose hospice care over futile treatment has put a spotlight on the value of hospice and palliative care and the important role it plays in our health care system,” Novas said.
“Having survived his initial prognosis and receiving hospice care for over a year now, he has done much to dispel the myth that hospice is only for people who are bedridden and actively dying. “
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