His gifts were many. And at 100 years old, he had given them consistently and generously throughout his life.
But no gift may be as enduring as the one President Jimmy Carter gave us the last nearly two years of his life, being cared for under hospice.
President Carter died Sunday, and his final chapter as the first known President who chose to live as a hospice patient will surely usher in an expanded awareness of what hospice care means.
In February 2023, President Carter announced that he would forgo prolonged medical treatment in favor of hospice care. And since then, his family, friends, and caregivers had reported delightful and meaningful moments with him in his own home, with reminiscing and laughter, and meals with favorite foods when he could still enjoy them.
My husband Rob and I were similarly blessed with hospice care before he died in 2018. For six months, we had the great privilege of living out Rob’s life by partnering with the most loving and expert medical care and counseling team that is Hospice & Palliative Care of Martha’s Vineyard.
Because of the great misunderstanding that hospice care is death itself, many people shy away from using hospice services, or wait until the very end of life to reach out to hospice team members for care. (Sadly, the average hospice patient is on board for only 17 days.)
Fear and lack of understanding of what hospice can do robs many patients and families of being able to live out a peaceful, less painful, connective, deeply enriching end of life with a loved one.
Just ask any family who has had hospice care, and you will most likely receive a very enthusiastic, “I don’t know what we would have done without them” response.
Fortunately, for me, my relationship with hospice began more than 35 years before Rob was diagnosed. My mother-in-law in my first marriage, Libby Bradford, inspired by the work of Dame Cecily Saunders who created the first hospice in England and grief pioneer Dr. Elisabeth Kubler-Ross, brought hospice care to Ohio in the 1970s. The concept was so new that many people mispronounced it “hoe-spice.”
After recruiting clinicians and developing a first-rate hospice team, Libby, at age 60, unexpectedly was diagnosed with a terminal illness herself. She announced to our family, “We are going to have hospice, and it will be a beautiful death.” And it was. I learned to live life through Libby’s dying, the hospice way.
When, more than 30 years later, my husband, 57, was diagnosed with gastric cancer, we moved from the Vineyard to Boston for treatment. As we sat on the ferry from Vineyard Haven to Woods Hole, Rob looked over at me and calmly said, “Let’s hope this goes our way, and if it doesn’t, I know you’ll set up hospice for us.”
In that moment, after a stab of pain, I felt relief. I wouldn’t have to gingerly approach the subject of hospice, if, God forbid, we were faced sooner than expected with Rob’s end of life.
Indeed, nine months later, Rob’s prognosis was serious enough that he gave me the nod. I placed the call to the executive director of Hospice & Palliative Care of Martha’s Vineyard. Rob signaled for me to hand him the phone. He made his own arrangements for hospice care.
When I look back now, it was a memorable and empowering moment for him to take charge of how he wanted his final days to go.
Hospice support and care eased our way through his final six months, and he was able to die exactly as he wished: at home in his own bed, pain-free, and surrounded in love.
For 44 years our island has been extremely fortunate to have outstanding hospice care in place right here — the services President Carter sought for his own powerful ending to his rich and meaningful life.
And for that, we thank him for showing the world a kinder, gentler, more loving way to die and say goodbye to those he cherished.
Debbie Phillips is a member of the board of directors for Hospice & Palliative Care of Martha’s Vineyard. She lives in Washington, D.C., and currently serves as a leadership coach at the White House.
