What We Could Learn from Jimmy Carter's End-of-Life Care

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The Carter Center, a nonprofit organization founded by former U.S. President Jimmy Carter, announced that the 98-year-old Carter would seek home hospice care rather than continue to undergo active medical interventions after a string of recent hospitalizations. In doing so, Jimmy Carter shed light on the importance of hospice care and its role in end-of-life interventions.

A common misconception regarding hospice care is that it requires halting all medical care. Instead, hospice care focuses on managing the patient's symptoms at the end of their lives, which may include pain, nausea, and difficulty breathing. The hospice team works closely with the patient's primary care physician to develop a plan of care that addresses the patient's specific needs. This may include medications, specialized equipment, or other interventions to manage symptoms and promote comfort.

Patients who qualify for hospice care must have an incurable and terminal medical condition with an expected life expectancy of fewer than six months.

Despite its grim externalities, hospice care is not only beneficial in terms of symptom management and emotional support but also highly valued by patients and their families. For decades, studies have shown that patients who receive hospice care report higher levels of satisfaction with their care and experience lower rates of depression than those who receive traditional care. Moreover, in a 2019 paper in the journal BMJ Supportive & Palliative Care, hospice care at the end of life was correlated with better pain control, reductions in hospital days, and fewer deaths in the hospital.

These studies demonstrate the importance and effectiveness of hospice care in providing comfort, dignity, and emotional support for patients and their families at the end of life.

As a physician who has cared for patients at the end of their lives, conversations regarding hospice care can be fraught. Many of us went into medicine wanting to do everything that we could to help our patients; as a naive medical student, I hadn’t realized that part of being a good physician was knowing when to stop. While some of our most extreme interventions can keep the heart beating and the lungs breathing even in the direst of circumstances, we can also easily prolong suffering in our blind desire to help.

Even introducing the subject of hospice care to patients and families requires the highest degree of sensitivity to the wishes of the patients and their families. When hospice care is first brought up—often after a long battle with terminal illness—I have seen a range of reactions from patients and their families, from guilt-laden curiosity to outright refusal. But often, as the physical and emotional stress of medical management grinds on in the face of a terminal illness, patients and their family members start to see medical care as a burden, not a source of salvation.

One of the primary benefits of hospice care is that it provides patients with the opportunity to spend their remaining time in comfort and peace, surrounded by their loved ones. Hospice care can also help to relieve the burden on family members who may be providing care for their loved one at home.

Another important aspect of hospice care is the emotional and spiritual support that it provides to patients and their families. Hospice care teams include social workers and chaplains who are trained to provide emotional and spiritual support to patients and their families. This support can help patients and their families come to terms with the end of life and find meaning in their experiences.

Hospice care plays a crucial role in end-of-life care, providing patients with comfort and dignity in their final days. Former President Jimmy Carter's decision to seek hospice care has brought attention to the importance of this specialized type of care, and I hope that it will encourage more patients and families to consider hospice care as a viable option for end-of-life care.