What the Carters Have Taught Us About Death and Dying

In the more than 40 years since former President Jimmy Carter left the White House, he and his wife, Rosalynn, have helped improve public health in the U.S. and around the world. Through the work of the Carter Center, the former President and First Lady have helped eradicate diseases and improve mental healthcare, and the Rosalynn Carter Institute for Caregivers has advanced caregiver health, strength and resilience.

Now at ages 98 and 95, respectively, the former President and First Lady continue to be trailblazers by initiating important conversations about end-of-life care. From one American family to another, the Carters are teaching us an important lesson.

In February 2023, Jimmy Carter and his family announced his decision to enter hospice care after a series of short hospital stays. This announcement generated interest in what it means to choose hospice care and how it can help ensure that people receive quality end-of-life care in accordance with their wishes. 

Hospice care, which saw significant growth in the U.S. during Carter’s administration and was authorized as a Medicare benefit soon after, provides end-of-life care and support including pain and symptom management, medical equipment and supplies, counseling, and respite care for family caregivers. Hospice has been shown to deliver increased satisfaction and quality of life, improved pain control, reduced physical and emotional distress, and reduced prolonged grief. By providing more connected care and limiting the number of stressful and costly hospital visits to manage symptoms and complications, hospice care also delivers savings. The more that patients and families utilize hospice services, the better their outcomes and the stronger the cost savings to Medicare, new research has shown. 

While patients become hospice-eligible when a physician determines their life expectancy is six months or less, 50% of patients receive just 18 days or less of hospice care. By publicly sharing his decision to enter hospice care earlier in his advanced disease, Carter is demonstrating how more Americans could benefit from earlier access. More than four months after entering hospice care, Carter has shown how his decision has allowed him to live life on his own terms, in the comfort of his own home and even still regularly enjoying his favorite treat of peanut butter ice cream.

Similarly in May 2023, the former First Lady announced that she had been diagnosed with dementia, with the intention of helping destigmatize the condition and encouraging individuals and their families to get the support they need.

Even in their final days, months and years, we continue to learn from Jimmy and Rosalynn Carter, whose family recently shared the statement, “We hope sharing our family’s news will increase important conversations at kitchen tables and in doctor’s offices around the country.” 

The Carter’s journey is truly a case study on end-of-life issues and challenges that underscore the importance of advance care planning. According to a survey commissioned by VITAS Healthcare, while more than half of Americans say they know the type of medical treatment they want to receive at their end of life, only about one in four (22%) have formally documented their wishes. The disparity is even more significant among people of color. It is incredibly important that healthcare professionals work with patients to look down the road and document the type of care they will want to receive if and/or when they are no longer able to make care decisions for themselves.  

Through the lens of the Carter family, we’ve had the opportunity to see the value of planning and support at the end of life. For the former President and First Lady, this has meant time spent together, surrounded by loved ones and receiving comfort care. We can thank the Carters for this final lesson, which has the opportunity to fundamentally change how many Americans think about death and dying.