Former President Jimmy Carter reached a significant achievement when he turned 100 on October 1. What makes Carter’s milestone birthday even more impressive is that he’s lived the past 19 months while in hospice care.

Carter died on December 29, 2024. 

According to the National Institutes of Health, more than 90% of patients who enter hospice care die within the first six months. About 36% of patients die within a week of entering hospice.

But Carter defied the odds.

Hospice experts agree that Carter’s extended stay in hospice has sparked plenty of discussion on the topic of end-of-life care. Sarah Whelan, MD, the medical director for OSF Hospice and Outpatient Palliative Care, Rockford, Illinois, says many people put off hospice care until it’s too late.

“President Carter's hospice process has really opened a lot of doors for conversation, and it really is about conversation,” says Dr. Whelan. “Many people feel that once you go on hospice care, the end is near. It's a few days away, or maybe a few weeks. I think it (President Carter) is really helping to dispel one of the biggest myths with hospice care – that you're imminently dying if you go on hospice care. But that's not the case in all situations.”

While the oldest-living former U.S. president is still living with hospice care, the objective remains the same – to make him as comfortable as possible.

“The goal of hospice is to help patients live out whatever days they have left with the best quality of life, help them obtain whatever goals they have left, if possible, and to manage their symptoms,” says Dr. Whelan. 

According to the National Care Planning Council, there are about 3,200 hospice programs in the U.S. that serve 1 million Americans a year during their final days and months.

Hospice is covered by private insurance, Medicare and Medicaid. For people who continue to live past the six-month mark, a hospice medical director or hospice doctor will need to recertify them every two to three months for insurance to continue covering the cost of care. Dr. Whelan says she’s cared for patients who’ve lived as long as two years in hospice.

There are many factors that can impact how long a patient will live while in hospice care. Sometimes it’s due to changes in care, including fewer medical procedures and fewer medications.

“When you do go on hospice care, often we go through a process of de-prescribing some medications, and that can be scary, because you've been taking these medications for many years thinking this is how I have to live if I want to keep living,” says Dr. Whelan. “And when the goals shift from curing a disease to managing symptoms and comfort and quality of life, some of those medications really aren't necessary anymore, and they may actually be causing side effects that are decreasing your quality of life.” 

But hospice is more than just treating the patient’s physical condition. Dr. Whelan says a care team, which includes a physician, nurse, social worker, chaplain and volunteers, also focuses on the emotional aspect of dying. Many programs offer services such as pet, music, art and massage therapy for patients. Volunteers can help by sitting with patients or assisting with errands or chores around the home.

While hospice won’t change the eventual outcome, the true benefit of hospice is the support the patient and loved ones need during those crucial last days, weeks or months.

“As a hospice doctor, I feel that everybody should be in hospice care at the end of life,” says Dr. Whelan. “The actual dying process itself often has symptoms that can be managed to allow for comfort for the patient, but also comfort for the family.” 

For more information on hospice, visit OSF HealthCare. 

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