How Jimmy Carter has changed the conversation around hospice

Former President Carter’s public disclosure in February that he was entering hospice care — where he remains more than a year later — is shifting the perception of end-of-life care for patients and their families.

At the time, many assumed the 98-year-old former president was on his deathbed, but his family said he continued to enjoy ice cream and stay up to date on the work of the Carter Center.

The president's grandson, Jason Carter, on Tuesday noted the long period he's been in hospice while speaking at the 28th Rosalynn Carter Georgia Mental Health Forum.

“My grandfather is doing OK. He has been in hospice, as you know, for almost a year and a half now. And he really is, I think, coming to the end,” said the younger Carter.

Ben Marcantonio, interim CEO of the National Hospice and Palliative Care Organization, told The Hill last year that the belief that hospice care is a short-term situation “can be a very common understanding.”

“The main marker identified in the benefit [of hospice care] is six months or less,” Marcantonio said. “Yet it also says that’s if the course of the illness or illnesses run their normal course. And so, it's not like a definitive marker.”

The average length of hospice care is roughly 90 days, which Marcantonio notes includes situations where it only lasts a few days or less. So, while some people may be surprised by how long Carter has been in hospice, his situation falls within the norms of what many patients experience.

Those who work in the hospice realm say Carter has really opened up the conversation for a general population reluctant to think about issues surrounding death and end-of-life care.

“I don't think we can understate the significance of someone as prominent and well-respected as Jimmy Carter … openly and publicly making that decision,” said Davis Baird, director of government affairs for hospice at the National Association for Home Care & Hospice.

Carter’s decision to publicly disclose his choice to go into hospice has served to highlight the multitude of benefits that patients enjoy, Baird said.

“Just the positive experience he's having is, I think, really important for the public to have that model,” he said. “These things often happen behind closed doors. Other celebrities that use hospice — you know, whether it's an old movie star, a sports star or someone — you often find out after they passed away that they were on hospice, and the journey isn't articulated.”

While the Carter Center is not providing any additional information about the former president’s health and declined to comment for this story, the rare anecdotes from family members have brought attention to the purpose of hospice care, which is to ensure a higher quality of life after a patient has decided to no longer pursue medical treatment.

At the time Carter entered hospice, it was shared that the decision had been made following a series of short hospital stays for an undisclosed condition. According to hospice experts, this is a common course of action among patients who get tired of constantly going in and out of hospitals.

Marcantonio said the thought process for many patients is: “We don't want to keep on this cycle of returning to hospitals or to seek some sort of other medical interventions to prolong life. Rather, we want to focus on quality of life and alleviating any discomfort, pain, any sorts of emotional challenges that might come with this process.”

Apart from the duration of hospice stay, Baird said another common misconception is that the process involves a precipitous decline in a person’s health. In fact, many patients stabilize after leaving the “ringer” of the health care system, he said.

Baird noted that treatment for terminal illnesses can be extremely depressing for an individual who would rather be doing more enjoyable things with their time. Transitioning to a space where their goals and desires are prioritized over treatment can result in the patient and their family feeling better.

As Carter, the longest-lived U.S. president in history, completes his fifth month in hospice care, he nears a significant milestone for many patients like him. After six months — 180 days — in hospice, patients on Medicare will have to go through a recertification process to see if they still meet the criteria for coverage.

Many people continue to live past the six-month mark, at which point a hospice medical director or hospice doctor will need to recertify them for Medicare to continue covering the cost of care.

These evaluations can sometimes result in grim outcomes for patients.

“If that patient is not, for example, showing fast enough decline in their medical profile, sometimes the contractors will come and take a look at that hospice and say, ‘Oh, this person’s not declining fast enough.’ So, you know, they weren't eligible,” Baird said.

If this happens, hospices may have to go through an audit that could lead to all their claims for a patient being denied.

“It's not something they like to do very often, but it does happen,” Baird said.

For the most part, recertification for hospice is a standard administrative process that commonly occurs, due to the fact that predicting when someone will die is an “extremely inexact science.”

Marcantonio hopes that Carter’s openness encourages others in similar situations to consider hospice care. He noted that just more than half of people who are eligible for hospice are receiving it.

And the sooner that eligible people elect to enter hospice, not only do they experience a higher quality of life, but it’s less costly overall, a recent study has found.

The research from NORC at the University of Chicago, which was published in March, found that Medicare spending for hospice patients was $3.5 billion less than if they had decided not to enter hospice.

Regardless of how long patients were in hospice, the study also found that patients and their families experienced “increased satisfaction and quality of life, improved pain control, reduced physical and emotional distress, and reduced prolonged grief and other emotional distress.”

“We've never heard anyone say, 'Gosh, I wish I had less time on hospice,’” Marcantonio said. “The more we can get past those myths … and those misperceptions that we mentioned, the more people will get the care that they need when they need it.”

—Updated May 15, 2024