“We must adjust to changing times and still hold to unchanging principles.”
– Jimmy Carter, 39th U.S. President
Our country now waits in anticipatory grief. Closer to home, with his decision to begin hospice care, President Jimmy Carter’s choice mirrors the decision-making about my late mother’s medical care. Both President Carter and my mother had also been in and out of the hospital prior to starting hospice, and both had been diagnosed with advanced melanoma and bravely endured the consequences. In the process, both learned to let go of control. And like my mother, even in his final moments, President Carter is opening our eyes to his quiet strength, teaching, inspiring, and demonstrating courage.
Hospice is an option for individuals with a terminal illness who have about a 6-month prognosis and who opt for not pursuing further medical intervention designed to prolong life. Hospice opens the doors to a dedicated medical team of physicians, nurses, social workers, nurse assistants, chaplains all working collaboratively to uphold the dignity and wishes of the patient. 1.6 million Americans received hospice care in 2018 according to the CDC. That same year, more than half of Medicare patients enrolled in hospice care died at home, according to research by National Hospice and Palliative Care Organization.
My mother viewed President Carter’s fight as an anchor of hope in her own battle with cancer. She admired this simple man of faith from Plains, Georgia as well as his many acts of service focused on upholding human rights. She respected his work with Habitat for Humanity, The Boys and Girls Clubs of America and with the Carter Center to eradicate Guinea worm disease in Africa. And as in his life, which was filled with courageous decisions witnessed by so many, we will never forget the bravery of his final weeks and days.
At the end of life, our sensory perception of the world around us becomes magnified. And today, I imagine that President Carter and his family are sharing and savoring final experiences together. President Carter’s sense of hearing is now probably one of his strongest. In her final moments, my mother could hear the buzzing of helicopters flying in the distance; the TV, always set to her favorite French channel; her loved ones surrounding her; the rhythms of her own breathing; the cadence of my dad’s poems; and the words I repeated into her ear: “All will be okay, I will take care of them. You can let go now. We love you so much.”
In his New York Times essay, palliative care specialist Dr. BJ Miller, who helps countless families face death and disease courageously, emphasized that “…living in the face of death can set off a cascade of realization and appreciation…”. This statement brought me much comfort as I walked with my own mother through the end of her life. I remember these final simple and mundane moments so vividly: requesting water, listening to her favorite singers, having a conversation about artichokes, smiling at her two grandsons, and enjoying a piece of tiramisu. Her final advice to her twin sister was “Ça va aller.” (“It’s gonna be okay.”)
As Dr. Rachel Naomi Remen, physician, healer, and author of Kitchen Table Wisdom, stated, “The great joy of being on the edge of life is that is it so much clearer.”She also shared that the transformative power of being close to death or witnessing loss can be a source of wisdom for our culture. Like my mother, President Carter exemplifies a fountain of conviction, of steadfast principles and wisdom, even at the very end, as shared in his memoir, saying, “Our commitment to human rights must be absolute, our laws fair, our national beauty preserved; the most powerful must not persecute the weak, and human dignity must be enhanced”. By choosing hospice care at the end of life, he is upholding this notion of human dignity for himself and setting an example for others. This, too, is a familiar experience for some families but much more work is needed for disadvantaged communities. Language barriers, an underlying mistrust, and a perception of hospice care as “giving up” exist within many communities, and a more inclusive focus is needed through community outreach and education.
As a nation, we hope that our loved ones will experience that level of dignity in today’s healthcare system. It is a privilege to die peacefully. As in my mother’s case, a privilege to have had a home to die in, a family who could allow additional caregiving to provide respite for loved ones, a daughter in the medical field who can advocate for her wishes and navigate complex health systems. As my mother approached her destination, the train moved smoothly and at other times unexpectedly. As she approached the final stop, I summoned the other passengers—my family—to her side. We weren’t quite sure where we were all headed, but we proceeded, and we put our trust in God. I held my dad’s wheelchair, putting his hands into hers and closing them tightly. Her death came peacefully one morning, a release and then complete stillness, like a snowy morning in the woods. As the warmth of her skin slowly ebbed away, and her face became childlike, even angelic. Then that person, those hands, that scent, were gone. Ushering my dad back to bed, I returned to her bedside and covered her body in a thick blanket, knowing that my dad would want to see her one last time. When her body was finally removed, a piece of each of us went with it.
Although life is finite and death is inevitable, the individual’s story remains unfinished, even unraveled, prompting us to piece it together. As Dr. Remen so poignantly notes, “What appears to be a catastrophe in our lives over time becomes a strong foundation to live a good life.” In this sense, President Carter and my mother have more in common than I had ever imagined. They both typify tender yet stoic personalities, a sensitivity to the underserved with a need to uphold justice and dignity, and this bravery has carried them through to the very end. In our collective grief, we continue to breathe life into shared memories and sow their seeds of wisdom.
Roxanne Almas, MD, MSPH is an Associate Clinical Professor of Pediatrics at UCSF Benioff Children’s Hospitals.