The Carters Are Showing Us What Hospice Means

By Ben Marcantonio, NHPCO COO and Interim CEO 

Former President Jimmy Carter and his family are showing us what it means to live fully and meaningfully at the end of life. For more than nine months, the family has generously shared parts of their experience with us, the American public, and by doing so have painted a new picture of hospice care for millions of Americans.

The photos and videos from the Rosalynn Carter memorial celebrations last week are the latest, and perhaps the most potent, examples of the Carters helping to reframe how people think about the end of life. Many people think of hospice care as giving up, or as something that is only available for a few days. The choice for hospice care has grown consistently to the point where today about half of Medicare beneficiaries select hospice for their end-of-life care. Even so, many still speak the word only in a whisper. Last week, we saw with our own eyes that hospice care can help patients achieve their most important goals even when their time to do so is limited. As New York Times reporters Rick Rojas and Jacey Fortin pointed out “Americans Glimpse Jimmy Carter’s Frailty and His Resolve,” it took incredible personal strength and fortitude, as well as the support of his family, for Jimmy Carter to travel and take part in these celebrations of his wife’s incredible life. It also took hospice care, with a team of hospice workers working with and supporting the family to help the patient – who happens to be a former President of the United States – meet his goals for the time he has left. That is exactly what hospices do, and I could not be more grateful to the Carters for showing it to their fellow Americans in real time.

Throughout last week, news apps, television screens, social media feeds, and newspapers brought us images of the oldest former President in American history celebrating the life of former First Lady Rosalynn Carter, his beloved wife of 77 years. First, at a tribute service in Atlanta – more than 150 miles away from the Carters’ home in Plains, GA – and later at the memorial service in Plains.

In some ways, the images were striking. We saw Jimmy Carter looking thin and pale, in a wheelchair, with a blanket covering his legs. His mouth was sometimes open, and his eyes – which have always been so bright – seemed sunken. We are not accustomed to seeing former US Presidents this way.

Yet in other ways, the images are very familiar, even ordinary. Rosalyn Carter famously said, “There are only four kinds of people in the world – those that have been caregivers, those that are caregivers, those who will be caregivers, and those who will need caregivers.” Many of us have personally witnessed – and often provided care for – family members, friends, or neighbors in times of declining health and frailty at the end of life. We have all been part of commemorations celebrating the life of loved ones after death, and we know how important these moments are. The images we saw of Jimmy Carter this week remind us of our own parents, grandparents, and friends. 

Jimmy Carter entered hospice care in mid-February of this year and has been receiving care at home, as the majority of American hospice patients do. It’s a fitting next chapter for the President whose administration first tested the hospice model as a national program – a test that led to the Medicare Hospice Benefit available to all Americans today.  By publicly sharing the choice for hospice, the Carters sparked a national dialogue surrounding the myths and misconceptions often associated with hospice. Since then, the news about President Carter’s life have helped demonstrate the many benefits of hospice care, which go beyond pain management. In fact, studies show that at any length of stay, hospice benefits patients, family members, and caregivers, including increased satisfaction and quality of life, improved pain control, reduced physical and emotional distress, and reduced prolonged grief and other emotional distress.

In the nearly 300 days since President Carter first elected hospice, the family has continued to share glimpses of the former President’s day-to-day life. We know he has had opportunities to visit and pray with family and friends, and has continued to follow world news, as well as his favorite baseball team, the Atlanta Braves. We know he has enjoyed peanut butter ice cream, one of his favorite treats, and that he and Rosalynn saw Fourth of July fireworks. When President Carter celebrated his 99^th birthday on October 1, we learned that he enjoyed receiving well-wishes from everyday citizens and celebrities alike. We know that Jimmy and Rosalynn spent most of their time together, often sitting in their living room holding hands. Hospice care is designed to support exactly these types of activities and experiences. Hospice care teams work with patients to understand their goals and provide care that enables them to meet those goals to the best of their abilities.

We also know that Rosalynn Carter, a preeminent mental health advocate, was living with dementia. The family made that announcement in May. In mid-November, the family shared the news that Rosalynn Carter had also entered hospice care. She died two days later, at home.

By offering these important details – big and small – the Carters have graciously let the public into their lives. They have sparked untold numbers of conversations across the country about how we each want to live our own lives at the end, about hospice and other care options – what these choices mean, and how they align to our values. In the news, on social media, and at kitchen tables across the country, the Carters’ unfolding story has created opportunities for people to educate themselves and each other, to have courageous conversations with loved ones about their own values and how they would want to live those values if they face serious illness or death, and even to reframe what dying means – it can, and often does, mean ice cream, baseball, fireworks, and quietly holding hands with the people we love.