By Ben Marcantonio, NHPCO COO and Interim CEO
February 18, 2024 marks one year since President Jimmy Carter began receiving hospice care at home and generously shared that information with the American public. In that year, President Carter and his family have continued to share pieces of their experience with us, helping to shape the public’s understanding of what hospice care can offer patients and families. They have brought hospice care into the public eye and into our national conversation to a degree that rarely happens.
The Carters spearheading this change in awareness aligns with the many ways in which they have impacted public health throughout their lives. Rosalynn Carter’s focus on mental health shifted the dialogue in the United States, and the positive ripples of her work continue to inform our approach to mental health today. The Carter Center has led the global effort to fight Guinea worm disease, and it is now on the cusp of being the second-ever disease to be eradicated. And, it was under President Carter’s leadership that the idea of government-supported hospice care was first tested. That demonstration project led to legislation, passed by Congress and signed into law by President Reagan, that formalized the Medicare Hospice Benefit. In other words, with hospice care, President Carter is living the last stage of his life in a way that matches his values. As President Carter’s grandson, Jason Carter, recently said about his grandfather’s end-of-life journey: “He is living this part of his life, as part of that same faith journey that he’s been on for his whole life.”
The hospice structure President Carter helped create has enabled about 30 million Americans over four decades to choose the support of hospice at the end of life. Of course, not everyone who receives hospice lives for a year. Six percent of patients are in hospice care for 365 days or more, while 10% receive up to two days of care and 25% receive up to five days of care. Hospices help patients at any length of stay, but President Carter’s story reinforces something we hear so often from patients’ families and from hospice providers: the wish that more people found hospice earlier, so they could benefit from more care and support.
Over the years, Americans’ awareness of hospice has grown, and more people have chosen hospice care. Today, about 1.5 million Americans make that choice each year. It’s reasonable to assume that the Carters’ choices to receive hospice care and to share that information with all of us will mean that more people consider and choose hospice as an option for their own end-of-life journeys.
What will it mean if more people choose hospice? Let’s look to the Carters as a guide. We know some of what President Carter’s life has been like over the last year. At the beginning of his care, he would have had conversations with members of the hospice interdisciplinary team (including medical, social, and spiritual care professionals) about his values and goals for his care. The hospice team would have developed a care plan tailored to the patient based on those conversations. If he is experiencing pain or discomfort, we know the hospice team would be working to minimize the pain or discomfort, and to make him as comfortable as possible. His care would be overseen by a physician specializing in hospice care, and he would be visited and checked on regularly by hospice nurses, aides, and volunteers, and very likely by social workers and spiritual caregivers (if that was part of his individualized care plan), and possibly by specialized therapists such as massage or music therapists.
From stories members of the Carter family and friends have shared with the press, we know President Carter, the longest-living president in American history, has been enjoying his favorite treat: peanut butter ice cream. During baseball season he watched his beloved Braves on TV. He watches the livestream of his niece teaching the Sunday school class that he used to teach. We know he has had visits, calls, and prayers with friends, including Ambassador Andrew Young, and several-times-per-week visits from Jill Stuckey, the superintendent of the Jimmy Carter National Historic Park. President Carter’s children have a rotation for spending time with him.
He has continued following the news and current events, and has even thought about ways he might be helpful to advancing peace, something he has done throughout his life. In October, President Carter celebrated his 99th birthday. Tributes, well-wishes, and accolades poured in from around the world, and we know he was able to enjoy those. Similarly, President and Rosalynn Carter celebrated their 77th wedding anniversary in July. We know that while she was still living, the two of them spent much of their time sitting next to each other in the living room of their longtime home in Plains, GA, holding hands. When Rosalynn Carter died in November, we all watched as President Carter traveled and attended services to celebrate the love of his life and honor her memory. Those photos and videos were a testament to an incredible love story and to the inner strength of Jimmy Carter. They were also a powerful visual of what is possible when someone has the right care model, including the support of hospice.
President Carter is showing us an amazing example of what it means to live out the end of one’s life in a way that is in keeping with the entirety of one’s life, and to experience life to the fullest, even as you prepare to die. What that means is different for everyone, as we are all unique individuals, but we should each have the opportunity to create the end-of-life journey that is right for us. Hospice care does that for millions of Americans.
Please join NHPCO in thanking President Carter for lighting the way for all of us. Learn more here and share your thoughts on social media using the hashtag #CandlesforCarter.
