“Do you think she’s going to be able to recover from this?” I asked our hospice nurse less than a day before my mother, Kimberly Goss Anbouba, would die. I was used to her defying the odds: Two years earlier, when she was first diagnosed with stage four colon cancer, the doctors told us she had less than two months to live. She did countless rounds of chemotherapy, radiology sessions, and several experimental treatments that extended her life—so I assumed there was more we could do. The hospice nurse took me into the kitchen and let 21-year-old me down gently: Not this time.
Known for a lifetime of humanitarian work, former President Jimmy Carter and his late wife Rosalynn Carter’s most lasting gift—certainly for me—may be their decision to help break the taboo in America around death and hospice care. Earlier this year, it was announced through the couple’s charitable organization The Carter Center that the 39th president was opting to receive hospice and palliative care at the family’s Plains, Georgia home, rather than interventive medicine. Three months later, the foundation shared Mrs. Carter’s dementia diagnosis and just a week ago announced that she would be entering hospice care at home, as well.
Despite the fact that 1.75 million people received hospice care in the United States last year, there is still a cruel misconception associated with it: entering hospice seems to be an assertion that the person is giving up on life, or is mere moments from death. But, both from a medical standpoint and a philosophical standpoint, that’s not the case. “Hospice”—which comes from the Latin word “hospis,” translating to host and guest—should be understood as a refocusing of care around making patients feel safe, supported and comfortable. Instead of choosing a medical plan aimed at fighting against a disease, hospice care prioritizes quality of life. And for patients—and loved ones—quality time is everything.
The taboo of death and dying in America is something I came to understand firsthand as I sat with my mom during her final days. Hoping to avoid the active rumor mill of my childhood community, we didn’t share the news of her entering hospice, as if this was a dark family secret. At a time when I needed my community most I found myself white-knuckling through the pain. Somehow, the word got out, and bereavement-style texts, calls, and Facebook posts quickly followed (“RIP Kim”), as though my mom had been pronounced dead—but she was still living, breathing, squeezing my hand.
I feel grateful that the Carters’s approached the end of their lives with such openness. “Mrs. Carter has been the nation’s leading mental health advocate for much of her life,” read the statement from The Carter Center on May 30th, addressing her dementia diagnosis. “We recognize, as she did more than half a century ago, that stigma is often a barrier that keeps individuals and their families from seeking and getting much-needed support. We hope sharing our family’s news will increase important conversations at kitchen tables and in doctor’s offices around the country.” The former first lady passed away on November 17th.
My mom spent the final days of her life receiving hospice care at home, which meant she was able to be in her own clothing, surrounded by her children, and get cuddles from her cat. Her pain was managed by the registered hospice nurse, ensuring it was the most peaceful experience we could give her—a small measure of comfort that I continue to feel grateful for years later.