Rosalynn Carter died in November, about six months after her family told everyone that she had dementia. She had only a few days of hospice care, and her weak husband was by her side the whole time.
There are many different ways to get end-of-life care, as the Carters’ different paths show. These supporters praise the Carter family for showing how real it is to age, get dementia, and die. They say they hope the attention will make more Americans look for services that can help patients and their families in the last few years of life.
CEO of the Hospice Foundation of America in Washington, DC, Angela Novas, said, “It’s been massive to have the Carters be so public. “It has shed hospice in a new light, and it’s raised questions” for people to learn more.
The Carter family made a statement before Sunday, which was the anniversary of their announcement that the 39th president would not be going to the hospital again and would instead be getting end-of-life care at home in Plains.
“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.”
To be clear, Jimmy Carter’s family has not said whether he is still in hospice care or has been sent home, which can happen when even a weak patient’s health gets better.
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Here is a look at hospice care and the Carters’ situation
Everyone, even the rich and powerful, can go to hospice.
Leading Age is a national network of more than 5,000 nonprofit groups that care for older people. Mollie Gurian is vice president of Leading Age. Hospice, in her words, is “holistic care … for someone who is trying to live the end of their life as fully as possible” but is no longer looking for a fix for a terminal illness.
Hospice provides a range of professionals to help each patient, including nurses, doctors, and social workers such as pastors and secular grief counselors. In home hospice, there are visits, but not care 24 hours a day or even full shifts.
To be eligible at first, a doctor must certify that the person has a fatal illness and that they are not expected to live more than six months. There are also disease-specific requirements.
Most of the time, care is provided and providers are hired by for-profit businesses or nonprofit organizations. Medicare gives these groups a daily payment for each member. There are four types of care and daily rates for each. It was first thought of after World War II and has been a part of Medicare since the early 1980s. Most private insurance plans also cover hospice care.
The federal Medicare Payment Advisory Commission (MedPAC) says that 1.7 million Medicare recipients signed up for hospice care in 2021, which cost taxpayers $23.1 billion. Almost half of the Medicare patients who died that year did so while they were in hospice care.
There is more to hospice than the “Morphine Myth.”
Hospice can make people think of “someone doped up and bedridden,” but Gurian said it’s not “just giving them enough morphine to get through the end.”
Patients do give up many medicines and treatments that could help them get better. No longer do people with cancer get radiation or treatment. People in the late stages of Alzheimer’s, Parkinson’s, or another degenerative neurological disease often stop taking their cholesterol and blood pressure medicines, and finally the medicines that help them manage their severe condition.
It depends on each case, Novas and Gurian said. If someone has end-stage kidney disease, some agencies might let them get dialysis or take regulatory drugs. Medicare almost likely doesn’t pay for those treatments separately, so they just have to pay for them.
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Also, hospice care doesn’t always mean giving up treatments for problems that make the patient less comfortable, like medicines for a urinary tract infection or bed sores that have become infected. Still, patients or their families may choose not to get these treatments, especially if the brain disease is in its last stages.
Jimmy and Rosalynn Carter have four children. One of them, Chip Carter, told The Washington Post that his mother had a serious urinary tract infection when she was admitted to hospice and died. Novas said that in those situations, painkillers are given to the patients.
JIMMY CARTER’S ENDURANCE IS NOT UNUSUAL
MedPAC found that the average length of stay for hospice patients who died in 2021 was 92 days. The average was 17 days, which is about two weeks longer than the time between when the Carters said the former first lady had gone into hospice care and when she died.
About 1 in 10 people who die in hospice care stayed longer than 264 days. Most of the costs come from cases that last too long. $13.6 billion of the $23 billion paid in 2021 was for stays longer than 180 days before death. Five billion of those were for stays longer than a year.
Patients can sometimes be sent home from hospice if their health gets better, especially after six months in the program. 17.2% of the patients were sent home in 2021. In its report to Congress, MedPAC said that for-profit hospitals have longer stays on average than charity hospitals. It also said that the high rate of living patients being sent home raises concerns about the standards for admission.
Novas gave answers. She said that the number of people with dementia at hospice has gone up, and that “a patient can wax and wane for months or even years.” She said that sheer grit is another thing that might explain Jimmy Carter’s resilience.
“We cannot measure the human spirit,” she said. With many conditions, “somebody who wants to be here is going to stick around for a while.”
Advocates want things to change and expand
Leading Age and other supporters say that the U.S. needs long-term care insurance, which Medicare does not offer. This is especially true as the Baby Boomer group ages.
She said that kind of care would help patients and their families handle a lot of care that hospitals don’t offer and that hospice doesn’t pay for, or at least shouldn’t pay for. For people with dementia, a long-term care benefit could become a more common way to get care that is covered by insurance.
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In recent sessions of Congress, bills have been proposed to make Medicare cover long-term care. But it’s hard, if not impossible, to get it passed because it would mean raising payroll taxes to pay for a new benefit.
Separately, Gurian said that Leading Age would like Congress to change the way hospices are paid so that more agencies can take in patients and still pay for some treatments that they don’t usually pay for. She said that some cancer patients could gradually decrease their treatments as a way to deal with their pain, rather than stopping all together and quickly moving on to strong drugs like morphine that take away all quality of life.
Jimmy Carter is still giving lessons
Gurian said that people in the U.S. health care system and society too often think that someone with a serious illness only has two options: “fighting” or “giving up.”
She told them, “Hospice is not giving up,” even if it means “accepting our mortality.”
Novas said Jimmy Carter has shown these differences through his public statements and his decision in November to go to Rosalynn Carter’s funeral, even though he was sick and would have to sit in a wheelchair with a blanket over his legs.
Carter’s grandson has also given a report on his health a year after he started hospice care.
“After a year in hospice, on a daily basis, we have no expectations for his body,” He told CBS Sunday Morning, “But we know that his spirit is as strong as ever.”
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Source: dailypositiveinfo.com
