When It’s Time for Hospice: A Lesson in Living and Dying

To me, the word “hospice” once signaled a difficult conversation, an unwanted outcome, a word synonymous with giving up. During medical school, my thinking began to change when palliative care physicians taught me to recommend hospice to patients. What personalized my understanding of hospice, however, was watching my Uncle John receive home hospice care. He survived a Whipple procedure, but the surgeons were unable to remove the entire pancreatic tumor, and he opted not to receive the recommended chemotherapy and radiation. He reasoned that he would rather spend his remaining time at home than make frequent hospital visits. He declined the serial MRIs offered to track the size of the remaining tumor, knowing that the results wouldn’t change his decision. As a physician, I was nervous about his refusing treatments. As his niece, I was in awe of his bravery and conviction.

He once de-scribed to me his preference to view the cancer as a part of his body stemming from his own cells rather than a foreign invader instigating a battle. I have since reflected upon how his passion for photographing dying flowers foreshadowed his remarkable acceptance of his own dying process.

Defying all statistics about his prognosis, he survived over three years into his late 70s. My Aunt Wanda, or “Wandawoman” as he called her, was intimately involved with the hospice care that he received for the last year of his life, including administration of oxygen, skin care, and medications for pain and anxiety. His primary care physician discontinued unessential medications. He took frequent walks with family members, and we often joked about my comment that he would win the hospice Olympics if such an event existed. In his wife’s words, “Being under hospice care allowed him to live while dying.”

He became thin like other cancer patients I had seen, but he didn’t have the extensive arm bruising from frequent blood draws, hospital-acquired infections, or delirium from being in an unfamiliar environment. He chose DNR/DNI status, and I was comforted knowing that his preference to die in his sleep wasn’t going to be interrupted by anyone cracking his ribs or intubating him. His brother-in-law, a master staircase builder, crafted a simple pine coffin with one of Uncle John’s sons. Uncle John chose not to see the coffin, but he did ask if it would have wifi access in his characteristically witty and mischievous tone.

When I came to visit, his mind was clear enough to reminisce about my lifelong gravitation toward him. I never tired of hearing his sonorous baritone voice, which he had previously used to perform Shakespearean plays and “Ol’ Man River” from “Showboat.” Throughout his ordeal, he continued singing and giving his granddaughter voice lessons.

I remember more of the sentiment than the words that he used as he reflected upon dying in our final visits. Sitting with him was deep and captivating—nothing else in the world seemed to matter. It felt simultaneously voyeuristic and sacred to watch someone die at home over the course of months. When Wanda called to say that he had died in his sleep, I felt an overwhelming sense of relief. Wanda—an unapologetically fearless and resolute woman—prepared his body and hosted a home wake for guests to pay their respects. His sons and brother-in-law later placed his body in the simple pine coffin and transported his remains to be cremated. This ending was decidedly human, and I knew it was exactly what Uncle John would have wanted.

As a psychiatrist, I have become comfortable talking about death, but from a decidedly preventive angle. Uncle John showed me the power—in select cases—of approaching death with acceptance and dignity. Perhaps it is our collective avoidance of these discussions about death that has led us to be so aggressive and interventionist at the end of life. As psychiatrists, we can offer space to dying patients, their families, and other providers to express their views and experiences. Through mutual understanding, perhaps we can achieve a more balanced approach. ■