The recent death of former first lady Rosalynn Carter and the ongoing life of her husband, former president Jimmy Carter, have brought to light one of the most difficult questions that individuals with life-threatening illnesses and their families must grapple with: when to choose hospice care.
Rosalynn Carter passed away merely two days after entering hospice, a program supported by Medicare for individuals who have decided to forego further attempts to overcome their illnesses and instead focus on improving the quality of their remaining time. In February, the 39th president, Jimmy Carter, also made the same decision at the age of 98, surpassing the initial prognosis of only six months to live that is standard in hospice care.
Rosalynn Carter, aged 96, was suffering from an infection that did not respond to antibiotics. This is one of the reasons why people with dementia often transition to hospice care later in the course of their illness, according to experts. Other factors include late-stage symptoms like the loss of the ability to swallow or a sudden event, such as a hip fracture or stroke. Friends and caregivers may notice significant declines in health or changes in behavior, such as refusing to eat or drink.
However, it is evident that many people follow a similar path to Rosalynn Carter. Approximately half of all individuals are in hospice at the end of their lives, but more than 25 percent of hospice patients enroll in the final week, based on 2021 data from the Medicare Payment Advisory Commission, which provides advice to Congress on Medicare matters.
Among the 1.7 million Medicare patients who used hospice in that year, some availed themselves of its services for much longer periods. This is reflected in the data, which highlight the dual nature of hospice care: the median stay is only 17 days, with half of the patients in hospice for less than 17 days and the other half for longer. However, the average stay is 92 days, indicating that certain patients remained in hospice for many months.
Angela Novas, the senior medical officer for the Hospice Foundation of America, mentioned that Rosalynn Carter’s experience is not unusual. Novas explained, “When people reach that age and have a progressing chronic condition like dementia, there comes a point where suddenly the symptoms accelerate significantly.”
Delays in enrolling in hospice can also be attributed to doctors, as noted by Mamta Bhatnagar, a physician specializing in hospice and palliative care at the University of Pittsburgh Medical Center. She stated, “In reality, we do tend to enroll them quite late in their illness,” adding, “Sometimes, doctors have difficulty predicting, and… many times, patients wait,” hoping for a final experimental treatment or other developments.
Cancer patients, who were the original intended beneficiaries of hospice, often have longer stays because the progression of their disease is more predictable. However, this may not always hold true, as exemplified by Jimmy Carter’s battle with melanoma.
“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.'”
Nearly 49 years after the first U.S. hospice opened in Connecticut, confusion still persists regarding end-of-life care options, according to caregivers and experts. Individuals who opt for hospice commit to relinquishing therapeutic efforts aimed at prolonging their lives, instead focusing on comfort and enhancing their quality of life. It requires the attestation of two physicians that the patient has six months or less to live, although this period can be extended, and patients can change their minds about hospice at any time.
Hospice care is predominantly provided at home, but the term “home” can encompass nursing facilities, hospitals, or standalone hospice centers, among others. The latter are increasingly operated by for-profit companies but can also be run by nonprofit organizations.
In contrast, “palliative care” aims to improve patient comfort and reduce stress while doctors continue to seek a cure for the underlying disease. In some cases, hospital staff may use the term “comfort care” to describe measures taken for patients in the final stages of life. There may be overlaps between life-prolonging and palliative therapies, such as using diuretics for individuals with heart failure or using radiation to alleviate pain by shrinking tumors, which doctors may need to justify when used in hospice care.
Medicare-sponsored hospice care 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, marking a rare expansion of benefits during an administration focused on reducing government. (Rosalynn Carter later established an institute that focuses on caregivers’ needs.)
The hospice team typically comprises a nurse, physician, home health aides, social worker, chaplain, volunteers, and grief counselors, all working together to ensure the final stage of life is as comfortable as possible while reducing stress. They provide support not only to the patient but also to family members and other caregivers, although the primary burden still falls on the family.
Myths and misconceptions about hospice care are still prevalent, according to Joan Teno, a hospice physician and researcher at Brown University. Some patients still believe that hospices are places where patients are hastened to their deaths, often due to the use of morphine to alleviate end-of-life pain. Others mistakenly assume that the hospice team will take over entirely, relieving family members of caregiving responsibilities.
Vanessa Pettyjohn, a retired county worker residing in Millsboro, Delaware, expressed her decision to opt for hospice care at home immediately upon receiving a stage four lung cancer diagnosis in October. This marked her second battle with cancer, having survived breast cancer about 20 years ago. By early November, her hospice care was established. Pettyjohn explained her choice, saying, “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,” highlighting the comfort and support hospice offers.
For individuals with dementia like Rosalynn Carter, who was diagnosed with the disease in May, the Functional Assessment Staging Test (FAST) helps doctors determine the appropriateness of hospice care. In dementia patients, changes may be gradual and subtle, making them less noticeable to caregivers, which can result in delayed hospice care, according to Ben Marcantonio, interim CEO of the National Hospice and Palliative Care Organization.
Marcantonio emphasized, “There’s very few people who say, ‘I wish I had started hospice later.'”
During the end-of-year holidays, there tends to be a surge in inquiries about hospice care as families gather and physical and mental decline become more apparent, noted Novas. The Carters’ experience serves as a valuable lesson on how to navigate these difficult decisions.
“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.”