It’s been a year since Jimmy Carter entered hospice care at his home in south Georgia. In that time, he has had his 99th birthday, had tributes paid to his memory, and lost his wife of 77 years.
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.
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.
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.”
