President Jimmy Carter Hits 1-Year Mark Since Entering Hospice Care: 'It's Very Powerful'

When President Jimmy Carter announced that he had begun receiving hospice care last February, the world prepared to say goodbye. But 12 months later, the longest-lived former president has handily beat the public's prognosis, continuing to watch sports on TV, share moments with his grandkids and shape his gargantuan legacy from the comfort of his longtime Plains, Georgia, home.

Jimmy's time in hospice has been an unforeseen blessing for the Carters, his grandson Jason told PEOPLE in September, "both because there's been so much additional time that we've all gotten to spend together, but also because it's given us this ability to reflect on our personal relationships and experience [an outpouring of love] from around the world."

The past year brought a whirlwind of emotions for the Carter family. Just three months after Jimmy terminated medical intervention, former first lady Rosalynn Carter was diagnosed with dementia.

Rosalynn's diagnosis changed her memory, but it didn't change her joyful outlook or her routine — she still spent her days right beside her husband, Jimmy, calmly holding his hand. "They are in love at home together and at peace with whatever comes," Jason said in the September interview. "That love story that really defines their life continues to define it."

In July, Jimmy and Rosalynn celebrated a historic 77 years of marriage at their home; in August, Rosalynn turned 96; and in October, Jimmy set a new record for a U.S. president when he turned 99.

Then in November, Rosalynn, too, entered hospice care. Only two days later, the Carter family announced that the groundbreaking first lady and mental health advocate had died. Her short time in hospice — juxtaposed with the former president's year-long care journey — highlighted the personalized nature of end-of-life care, which can look vastly different for each patient depending on their diagnosis, living situation and personal priorities.

"Statistically, the majority of people who enroll in hospice care unfortunately are on hospice care for less than a month," says Dr. Holly Yang, president of the American Academy of Hospice and Palliative Medicine. "However, people could benefit from it for months, and it's not unusual to have people who live longer than sometimes the doctors expect."

The Carters' Public Hospice Journey Matters

In their final chapter, the Carters made an intentional effort to break down stigmas by being transparent about their declining health and their decision to enroll in at-home hospice care. Their seemingly simple acts of visibility have now given way to 12 months of conversation about the hospice care benefit — and helped show that the practice is more about enrichment than accepting defeat.

"It's my experience that a lot of people would rather not think about or talk about the last days or weeks or months of life," says Dr. Joe Rotella, chief medical officer at the American Academy of Hospice and Palliative Medicine, "so they may just wait until they have to address something like this or until their doctor brings it up."

"When a really public figure goes on record that this is a choice they've made, it encourages people to go ahead and ask more questions about it and give it some more thought," he continues. "And maybe over the long haul, we get over our discomfort with these topics and realize that if people are going to live to their fullest as long as they can live, we need to know when it's time to think about hospice care, because that's what hospice care can do."

In March, the Carter family is being honored with a presidential citation from AAHPM — an award granted by academy president Dr. Holly Yang, one of many professionals in the field who have commended the Carters' openness in recent months (last August, the National Hospice and Palliative Care Organization hosted an event in Times Square to honor President Carter for "once again leading by example").

James IV, the Carters' grandson, will accept the AAHPM award on his family's behalf.

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"I'm just really grateful that President Carter and the former first lady made these decisions to be public about their choice because a lot of people aren't — and that's understandable," Yang tells PEOPLE. "It's really allowed the American people to think, 'Oh, that's interesting. What is the benefit? Why would this very famous person who should ideally have the very best health care choose hospice?'"

"Raising awareness, raising curiosity, and I hope fostering conversations in families about these decisions will help people access hospice care at the right time for them, and ideally, think about it at an earlier time if that's possible for their disease course," she says.

Hospice care is still medical care, the AAHPM emphasizes, but it's aimed at maximizing comfort when someone is nearing the end of their life — and supporting the patient's family along the way. Hospice care can include managing symptoms, offering emotional support through social workers or chaplains, and even assisting with funeral planning.

Though hospice was formally established as a Medicare benefit during President Ronald Reagan's first term, President Carter was among the early advocates for advancing end-of-life care. He declared November National Hospice Month in 1978, and the following year his administration launched the first hospice care demos.

Since the former president himself entered hospice care last February, Rotella tells PEOPLE, "I see more media coverage, I see more public interest, I hear more people talking about what hospice can do for you just because a public figure made that choice."

"It's particularly powerful," he adds, because "that choice was made, and a few days later, they were still living to their fullest as far as we can tell. No, it isn't just for the last days of life. It can be a much richer experience than that."

Read more stories about how hospice and palliative medicine have improved people's quality of life — and how you or a loved one can qualify for end-of-life benefits — at PalliativeDoctors.org.