When President Jimmy Carter announced last February that he had begun receiving hospice care, the world prepared to say goodbye. But 12 months later, the longest-serving former president has deftly defied public predictions, continuing to watch sports on TV, share moments with his grandchildren and shape his vast legacy from the comfort of his longtime home in Plains, Georgia.
Jimmy’s time in hospice was an unexpected blessing for the Carters, his grandson Jason told PEOPLE in September, “both because there was so much extra time we could all spend together, but also because it gave us this ability to reflect on our personal relationships and experience [an outpouring of love] from all over the world.”
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The past year has brought a whirlwind of emotions for the Carter family. Just three months after Jimmy stopped 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 by her husband, Jimmy’s hand, calmly holding his hand. “They’re in love at home together and at peace no matter what,” Jason said in a September interview. “That love story that really defines their life continues to define it.”
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Jimmy and Rosalynn Carter walk in Plains, Georgia on August 4, 2018.
Matt McClain/The Washington Post via Getty
In July, Jimmy and Rosalynn celebrated their historic 77th wedding anniversary at their home; in August, Rosalynn turned 96; and in October, Jimmy set a new record for an American president when he turned 99.
Then, in November, Rosalynn was also admitted to the hospital. Just two days later, the Carter family announced that the groundbreaking first lady and mental health advocate had passed away. Her short time in hospice—compared to the former president’s yearlong journey of care—highlighted the personalized nature of end-of-life care, which can look vastly different for each patient, depending on their diagnosis, life situation and personal priorities.
Rosalynn Carter, former first lady and mental health advocate, dies at 96
“Statistically, most people who enter hospice care unfortunately stay in 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 living longer than sometimes doctors expect.”
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Former President Jimmy Carter attends a tribute to his late wife, former first lady Rosalynn Carter, on November 28, 2023.
ANDREW CABALLERO-REYNOLDS/AFP via Getty Images
Carter’s journey to public hospice is important
In their latest chapter, the Carters made a deliberate effort to break down stigmas by being transparent about their failing health and their decision to enroll in home hospice care. Their seemingly simple acts of visibility have now given way to a 12-month conversation about the benefits of hospice care — and helped show that the practice is more about getting rich than accepting defeat.
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“It’s been my experience that many people would rather not think about or talk about the last days, weeks or months of life,” says Dr. Joe Rotella, chief medical officer at the American Academy of Hospice and Palliative Medicine, “so they can just wait until it’s over.” they have to deal with something like this or until their doctor mentions it.”
“When a really public person says it’s a choice they made, it encourages people to go ahead and ask more questions about it and think about it a little more,” he continues. “And maybe in the long run we get over our discomfort with these topics and realize that if people want to live as fully as they can, we need to know when it’s time to think about hospice care, because that’s what hospice can do.”
Dr. Joe Rotella
I think it’s very powerful.
— Dr. Joe Rotella
In March, the Carter family was honored with a presidential recognition from AAHPM — an award presented by the academy’s president, Dr. Holly Yang, one of many professionals in the field who praised the Carters’ openness in recent months (last August, the National Hospice and Palliative Care Organization was host an event in Times Square honoring President Carter for “once again leading by example”). Jason, the Carters’ grandson and president of the Carter Center, will accept the AAHPM award on behalf of his family.
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“I’m really grateful that President Carter and the former first lady made these decisions to go public with their choice because a lot of people didn’t — and that’s understandable,” Yang tells PEOPLE. “It’s really allowed Americans to think, ‘Oh, that’s interesting. What’s the benefit? Why would this very famous person who ideally should have the best health care choose hospice?'”
“Raising awareness, raising curiosity and hopefully encouraging conversations within families about these decisions will help people access hospice care at the right time for them, and ideally think about it earlier if possible in the course of their illness,” she said. is. he says.
How Rosalynn Carter’s focus on carers fits into the larger theme of her ‘enduring’ mental health activism
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Jimmy and Rosalynn Carter have dinner at a friend’s home in Plains, Georgia on August 4, 2018.
Matt McClain/The Washington Post via Getty
Hospice care is still medical care, the AAHPM emphasizes, but it’s focused on maximizing comfort as someone nears the end of their life — and supporting the patient’s family along the way. Hospice care can include managing symptoms, providing emotional support through social workers or chaplains, and even help with funeral planning.
Although hospice was formally established as a Medicare benefit during President Ronald Reagan’s first term, President Carter was among the earliest advocates for improving end-of-life care. He declared November National Hospice Month in 1978, and the following year his administration launched the first hospice demonstrations.
Jimmy Carter’s choice to use hospice care is ‘deliberate’, expert believes
Since the former president himself entered hospice last February, Rotella tells PEOPLE, “I’m seeing more media coverage, I’m seeing more public interest, I’m hearing more people talking about what hospice can do for you just because a public figure has chosen to. ”
“It’s especially powerful,” he adds, because “that choice was made, and a few days later, they were still living life to the fullest as far as we can tell. No, it’s not 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.
Categories: Trends
Source: HIS Education