Carters' journey highlights tough questions about when to choose hospice

The death of former first lady Rosalynn Carter on Sunday, and the survival of her husband, former president Jimmy Carter, have exposed one of the most achingly difficult questions faced by people with life-threatening illness: when to choose hospice care.

Rosalynn Carter died only two days after entering hospice, the Medicare-supported program for people who have decided to relinquish attempts to overcome illness and focus on the quality of their remaining time. The 39th president made the same decision in February at the age of 98 and has outlasted the initial prediction of six months to live that is standard in hospice.

Rosalynn Carter, who was 96, had an infection that was not responding to antibiotics. It is among the many reasons people with dementia might switch to hospice care late in the course of the disease, experts said. Others include late-stage symptoms, such as losing the ability to swallow, or a sudden event, such as breaking a hip or suffering a stroke. Friends and caregivers may notice a significant decline in health or change in behavior, such as refusing to eat or drink.

But it's clear that many people follow the same path as Rosalynn Carter. About half of all people are in hospice at the end of their lives, but more than 25 percent of hospice patients enroll in the final week, according to 2021 data from the Medicare Payment Advisory Commission, which advises Congress on Medicare issues.

Others among the 1.7 million Medicare patients who used hospice that year availed themselves of its services for much longer. That is reflected in data that reveal the dual nature of hospice: The median stay is only 17 days, meaning half of patients were in hospice less than 17 days and half longer than that. But the average is 92 days, which shows that some patients were in hospice for many months.

Angela Novas, senior medical officer for the Hospice Foundation of America, a nonprofit organization, said Rosalynn Carter's experience is not uncommon.

"When people are that age and have a chronic condition like dementia that is progressing, and progressing slowly, there comes a turning point where suddenly the symptoms accelerate exponentially," Novas said.

Doctors can also play a role in delays in enrolling, said Mamta Bhatnagar a University of Pittsburgh Medical Center physician who specializes in hospice and palliative care.

"In reality, we do that, we do tend to enroll them quite late in their illness," Bhatnagar said. "Sometimes, doctors have difficulty prognosticating and . . . a lot of times patients wait," hoping for a final experimental treatment or some other development, she said.

Cancer patients, who were the original intended beneficiaries of hospice, often have longer stays. The course of their disease can be easier to predict, though that may not be true of Jimmy Carter, who has endured melanoma.

"He obviously had chronic terminal conditions resulting in frequent hospitalization, and he said, 'No, I don't want this any more. I want to go home and be with my family, be with my wife, eat ice cream,'" Novas said.

In an email, the Carter Center, the nonprofit organization founded by the Carters, said it was not "able to comment on the specifics of President and Mrs. Carter's health or care."

Forty-nine years after the first U.S. hospice opened in Connecticut, there is still considerable confusion about end-of-life care options, according to caregivers and experts. People who choose hospice agree to give up therapeutic efforts to prolong their lives and focus on comfort and quality of life. Two physicians must attest that the patient has six months or less to live. The period can be extended, and patients can change their minds about being in hospice at any time.

Hospice is most often provided at home, but "home" can be a nursing facility, a hospital or a free-standing hospice center, among others. The latter are increasingly run by for-profit companies but also are operated by nonprofits.

In contrast, "palliative care" aims to make patients more comfortable and ease stress but can be done while doctors are still seeking to cure a disease. Hospital staff also may use the term "comfort care" to describe measures taken for patients who are dying in the hospital.

Sometimes, life-prolonging and palliative therapies can overlap, such as the use of diuretics for people in heart failure or radiation to relieve pain by shrinking a tumor. Doctors sometimes need to justify their use in hospice, Bhatnagar said.

Medicare-sponsored hospice began as a pilot program in 1979 under the Carter administration. Congress passed a law to implement hospice care during Ronald Reagan's first term, a rare expansion of benefits during an administration focused on paring back government. (Rosalynn Carter later started an institute that focuses on the needs of caregivers.)

The hospice team may include a nurse, physician, home health aides, social worker, chaplain, volunteers and grief counselors - all working to make the final period of life as comfortable as possible and to reduce stress. They support family and other caregivers as well as the patient, Novas said, but the primary burden still falls on the family.

Myths and fears about hospice still abound, said Joan Teno, a Brown University hospice physician and researcher. Doctors and advocates said they still hear from patients that hospices are where patients are killed off, usually because of the use of morphine to relieve pain in end-of-life care. Others think that the hospice team will take over completely and that family can leave the responsibilities of caregiving to them.

Vanessa Pettyjohn, a retired county worker who lives in Millsboro, Del., said she knew immediately upon receiving a diagnosis of stage four lung cancer in October that she wanted to spend her final months in hospice at home. It was her second bout with cancer. She survived breast cancer about 20 years ago, she said.

By early November, her hospice care was set up. "I prayed about this. I've looked into it, and I'm going to go with hospice and go to what the good Lord has for me," she said.

"Why put yourself through a whole lot of chemo, radiation . . . when in hospice they make you comfortable, they're there for you," Pettyjohn said.

For people with dementia such as Rosalynn Carter, who was diagnosed with the disease in May, the Functional Assessment Staging Test (FAST) helps doctors determine whether hospice is appropriate. In patients with dementia, changes may be slow and subtle. Caregivers may not notice them as readily, and hospice care can be delayed, said Ben Marcantonio, interim CEO of the National Hospice and Palliative Care Organization.

"There's very few people who say, 'I wish I had started hospice later,'" Marcantonio said.

End-of-the-year holidays produce a surge in calls about hospice when families gather and physical and mental decline can become apparent, Novas said. The Carters have provided a lesson in what to do next.

"The Carters are doing a fantastic job in continuing to educate us," Novas said. "Throughout their lives, and now in their deaths, their legacy will be teaching us about mental health and how to live and how to die well."

People seeking advice about hospice can contact the Hospice Foundation of America's Ask an Expert service at https://hospicefoundation.org/Ask-HFA [hospicefoundation.org] or by calling 202-457-5811 or 800-854-3402.

More:Hospice Foundation