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It's been nearly 18 months since Jimmy Carter, our 39th president, enrolled in hospice care.
The family's announcement was brief. Following a "series of short hospital stays," the president opted to spend his remaining days in his home of 60 years, receiving hospice—medical care that supports patients and their loved ones holistically, focusing on what's personally important. For Carter, that has meant no more trips to the hospital.
Now, in the last chapter of a remarkable life, he leaves one of his most enduring legacies—his very public choice to prioritize quality of life over simply being alive.
Earlier this year, his grandson, Jason, observed that, "We have no expectations for his body. But we know that his spirit is as strong as ever."
The physical changes were apparent the last time most Americans saw President Carter at the funeral of his wife, Rosalynn. The image of our former president seated in a wheelchair, his face thin and body worn, reverberated throughout the country, moving Americans to ask questions about what is meaningful to them as they face future health care decisions.
Hospice care is about living one's life, on one's own terms, just like former President Carter has been doing. Although Carter's family has shared few specifics, they have vocally supported his decision to focus on quality over quantity of life. Rather than release medical data, such as lab results, the family has opted instead to share the simple pleasures that make even a former president human, like enjoying a scoop of ice cream.
President Carter's end-of-life experience is the exception, not the rule. While 90 percent of seniors prefer to pass away at home, only 34 percent do. The other two-thirds die in a health care facility, often a hospital. This end-of-life acute care not only fails to honor patients' wishes, it also frequently leads to avoidable patient harm, including infections, confusion, and falls. In-hospital care paradoxically leads to more pain and suffering and helps explain why we spend more on health care in the final months of life than any other country.
As physicians, we know there is a better way. Harvard researchers found physicians are significantly less likely than others to die in hospital, presumably because we've seen firsthand how aggressive end-of-life interventions often causes more harm than good.
Yet, as human beings, our usual drive is to stay alive. So, how and when do we choose, like President Carter, which path is best as we approach the end-of-life?
For healthy people, contemplating one's mortality can seem unfathomable; for patients with serious illness, it's commonplace. Patients want providers to talk with them about options for future care—including palliative care—specialized medical care focused on providing relief from the symptoms and stress of serious illness. Basic medical training doesn't equip providers with skills to effectively meet a patient's values and goals with a holistic, personalized care plan.
Palliative medicine specialists gain this expertise by completing additional training in optimizing quality of life and complex medical decision-making. Our already strained health care workforce barely has a quarter of the palliative specialists needed for our aging U.S. population.
Given that capacity constraint, we've been studying whether primary care providers (PCPs) could help fill that gap. The U.S. has approximately 200,000 of them, and most seniors have a dedicated PCP. PCPs don't always have the expertise or resources to provide holistic care to all seniors who would benefit. To help PCPs better care for their sickest patients, we provided PCPs with essential elements of palliative training, including how to identify patients who would benefit, discuss goals of care, and collaborate with specialized home-based care teams.
Studying nearly 2,000 seniors who died, we found that patients cared for by PCPs who collaborated with palliative care teams spent five more days at home in their final months, and were two-thirds less likely to die in a hospital. In addition, their out-of-pocket health care expenses—a major source of hardship—were one-third lower.
Given the long-standing patient relationships that are at the heart of primary care, integrating palliative care is a natural extension of primary care—literally meeting patients where they are, including at home.
Importantly, palliative care is not "less" care, and many recipients actually live longer. Seniors receiving palliative care often continue to pursue life-prolonging treatments, such as chemotherapy and surgery, while ongoing support from an interdisciplinary palliative team addresses unmet needs, like spiritual care and pain management. The team is also available to guide patients considering focusing exclusively on symptom management and comfort, like President Carter.
Reflecting on President Carter's journey, and on the patients we studied who spent more and higher-quality time at home, our conviction has never been stronger—investing in the collaboration between primary care and specialty palliative care for the country's seniors must be a national priority.
Benjamin Kornitzer, MD, is special advisor to agilon health and assistant clinical professor of Medicine at the Icahn School of Medicine at Mount Sinai.
Nathan Goldstein, MD, is chair of the Department of Medicine at Dartmouth Health and Dartmouth's Geisel School of Medicine and past-president of the American Academy of Hospice and Palliative Medicine.
The views expressed in this article are the writers' own.
