Former President Jimmy Carter’s journey in hospice care, which began in February 2023, has surpassed expectations, bringing renewed attention to the nature and benefits of hospice. At 99 years old, nearing his 100th birthday on October 1st, Carter’s condition is reported as “good” and “fantastic” by his personal pastor, Rev. Tony Lowden, who recently visited him at his Plains, Georgia home. This positive update comes nearly 19 months after he initially entered home hospice care, a period significantly longer than typical hospice stays, highlighting his remarkable resilience and the broader conversation around end-of-life care.
Few anticipated such enduring strength from President Carter after he commenced hospice care. Data from MedPAC indicates that in 2022, only a small fraction, about 10%, of Medicare recipients who passed away while in hospice care had stays extending beyond 275 days. Carter’s prolonged period in hospice not only defies statistical norms but also underscores his well-documented tenacity. As Rev. Lowden noted, “It’s all up to the human spirit and their will. He still believes he has a lot to give to this nation.”
Hospice care is fundamentally designed to offer comfort, manage pain, and provide emotional and spiritual support for individuals facing terminal illnesses. It is not a curative treatment but rather a program focused on enhancing the quality of life in the final stages. When Jimmy Carter’s family announced his decision to enter home hospice in February 2023, it followed a lifetime of public service and dedication. Later that year, in November, his wife of 77 years, Rosalynn Carter, a renowned advocate for mental health and caregiving, also entered hospice care, passing away shortly thereafter at the age of 96.
Experts in hospice and aging suggest that the Carter family’s openness about their hospice experiences has significantly increased public awareness and understanding of these programs. Amy Tucci, president of the Hospice Foundation of America, emphasizes this point: “They have done so much for raising awareness of hospice care because people just don’t understand it. This provides the opportunity for people to learn that hospice care is not about dying, once you get in. It is about helping you live life to the fullest, and that’s clearly been demonstrated by former President Jimmy Carter.”
Jason Carter, the former president’s grandson, echoed this sentiment at a Carter Center Board of Councilors meeting. He mentioned that his grandfather remains in a similar condition since entering hospice 19 months prior, a period initially expected to be much shorter. Despite physical limitations, President Carter remains engaged, even expressing his political views in an interview with “The Hill,” indicating his intention to vote for Vice President Kamala Harris and his desire to move past the era of former President Donald Trump. Rev. Lowden also shares that conversations with the former president often include discussions about the Atlanta Braves, showing his continued connection to everyday life.
Understanding Hospice Care Eligibility
To be eligible for hospice care, medical professionals must certify that a patient is terminally ill with a prognosis of six months or less if the illness progresses naturally. Recertification is required if a patient lives longer or their condition improves. However, predicting the exact course of a terminal illness remains challenging even for physicians.
Several factors influence a patient’s hospice experience, including their specific diagnosis, the stage at which they enter hospice, and less tangible elements such as their spiritual beliefs and personal willpower. Dr. Tammie E. Quest, director of Emory University’s Palliative Care Center, notes, “Disease and certain conditions may not always run their usual course, and patients may live longer than initially expected.”
Dr. Quest further explains the core purpose of hospice care: “The idea is that when you get hospice care it’s to get pain and symptom management and the caregiver support that is needed to care for someone. Anybody who gets good physical, spiritual, psychological, and social support is likely to live longer. If you have a serious or terminal illness, and if you’re in pain every minute of every hour, you can imagine that you just want to die. But if you actually get the care you need, have a good support system, good caregiver support and respite, and the equipment and medications you need, then guess what? People who feel better live longer.” She also clarifies a common misconception: short hospice stays don’t imply hospice caused death; rather, the patient was likely already in the advanced stages of dying upon hospice admission.
Dr. Folashade Omole, Chair of the Department of Family Medicine at Morehouse School of Medicine, highlights the positive impact of home hospice: “I’ve seen people in home hospice care who tend to feel better among family and friends. Family is there, including pets, they have music and they’re in their own environment. You can see the love around you.”
The experience of Rev. Lamar Wadsworth, whose mother received hospice care at home after a stroke, reinforces this view. While acknowledging the professionalism of hospice facilities, he felt home hospice provided a superior level of support through the combined efforts of family, friends, and hospice nurses. He expressed regret for not involving hospice care earlier in his mother’s illness, praising the hospice nurses as “some of the best nurses I’ve ever met.”
Deciding When Hospice Care is Appropriate
The Hospice Foundation of America suggests considering hospice care when curative treatments are no longer effective or desired, when health significantly declines despite medical intervention, and when the primary focus shifts to comfort and enhancing life quality.
A significant shift in hospice care is the increasing number of patients with Alzheimer’s disease and related dementias, now accounting for nearly a quarter of hospice patients. Historically, cancer diagnoses were predominant in hospice, but improved cancer treatments have shifted this trend, with other conditions like COPD, Parkinson’s, heart failure, and circulatory diseases becoming more common.
Today, about half of Medicare beneficiaries who die annually receive hospice care. The duration of care varies greatly, from just a few days to over a year, as exemplified by former President Carter’s extended stay.
Dr. Omole addresses the fear that hospice is an immediate precursor to death, using Carter’s case to illustrate that this is not always true. Rev. Lowden concludes, “What it has taught us is that when folks go into hospice, it’s all about the will and that it’s all up to God… President Carter trusts God with all of his heart. Every day is a good day for him.”
Key Facts About Hospice Care
- The first U.S. hospice was established in 1974.
- Over 90% of hospice care in the U.S. is delivered in the patient’s home setting.
- Approximately 1.72 million Medicare beneficiaries received hospice care for at least one day in 2022.
- Medicare covers over 90% of hospice care costs nationwide.
- Hospice eligibility requires a prognosis of six months or less to live.
Sources: The National Hospice and Palliative Care Organization (NHPCO) Facts and Figures, 2024, National Alliance for Care at Home. Medicare Payment Advisory Commission.
