Jimmy Carter upends hospice expectations


To the Editor:

Last February, at age 98, former President Jimmy Carter entered home hospice care. He is the longest lived U.S. president in American history, and will turn 100 on Oct. 1. His family recently said how pleased they are that “his decision to enter hospice care has sparked so many family discussions across the country on an important subject.” 

It has done that for mine. 

Carter surprised much of the world in 1976 when, as a little-known governor of Georgia, he was elected President of the United States. All these years later, Carter continues to challenge preconceived beliefs and outdated notions. In this case, it’s that hospice care is about dying. Jimmy Carter has shown us that hospice care is actually about choosing to live in a way that optimizes comfort, dignity, and quality of life. 

Carter, like everyone, became eligible to begin hospice care after his doctor concluded he had six months or less to live (so much for certainty about life expectancy!). He decided to do that instead of continuing life-prolonging care. Now one year (and still counting) later, Carter has far exceeded the average stay of 97 days for Medicare hospice patients. Because the benefits are not widely understood it is common for patients and families to delay beginning this care. Half of all patients spend 17 days or less in hospice. 

The family discussion Carter has sparked for me is about my end-of-life wishes. Every year I sit down with my adult children to talk about this. As my health care proxy I don’t want them to struggle with heart-wrenching decisions without knowing, as much as possible, about what I would want. Deciding who will make decisions about our health care, if and when we can’t do that for ourself, is an essential part of planning for the future. It also is important — and kind — to help the proxy you choose be guided by knowing what you would want. 

We get together for our annual check-in discussion because my wishes may change over time. This year, we’ll add, for the first time, talking about when I wish to begin home hospice care. 

My thinking about this is grounded in experience when my husband Eli (at 63) and my dad (at 95) died, several years apart. Each of them spent far shorter time receiving home hospice care (Eli in Boston and Dad in Needham) than is happening with President Carter. Every experience is different. For my dad, I wish hospice had started months earlier than it did.

Once in hospice they were cared for by a team that included a nurse, doctor, social worker, and chaplain. This hospice staff focused on their comfort and making each day as good as it could be; they visited often and were always available to answer questions. I’m grateful for that support, but also for how the team helped me understand what was happening and feel confident that help was a phone call away. In addition to reducing fear, that support made it possible to have conversations I will cherish for the rest of my life. 

Now I am grateful that on the Island where I now live, Hospice and Palliative Care of Martha’s Vineyard offers this support. And that the Carter family’s decision to talk about their experience has reminded me to have an important conversation with my children about the home hospice decision I would want them to make for me. 

Phyllis Segal
Board of Hospice and Palliative Care Martha’s Vineyard