Special Section: Palliative Care
THE BENEFIT OF HOSPICE Dawn Gross, MD, PhD Sometimes, in order to provide what is needed, being open to the unexpected is essential. And sometimes, even when the unexpected happens, it may not be at all what is needed. “Great news! You’re not dying.” Granted, this is not a frequent phrase a hospice physician gets to say. Yet, on the occasion it has p a s s e d f r o m my l i p s i n t o t h e stunned ears of another it has surprisingly, rarely been greeted with ecstasy. Instead, patients and families have become angered, frustrated and even disappointed. Phil Havler was a young 40-year-old who had been told by various doctors his liver was failing. Because of the apparent advanced state of his diagnosis, and his ineligibility to be considered for an organ transplant due to his continued substance use, he became eligible to enroll in hospice. His years of chronic pain had recently become a thing of the past thanks to a variety of hospice interventions including acupuncture, massage therapy, an intensified pain medication regimen, and likely most importantly, Andres, his home health aide. Despite my expectation that Phil would be elated to learn his liver had recovered (it can do that on occasion, as it's a fairly resilient organ), Phil was mortified. “Really, doc? Are you sure? 'Cause I really do love those showers I get from Andres every Thursday. Does this mean those will have to stop now?” Phil lived as a long-term care resident in an over-filled, under-staffed, county-run nursing facility. His substance-use disorder led him to a life of isolation due to estranged relationships. Starved for companionship, Phil's transient terminal diagnosis suddenly offered him a built-in circle of companionship filled with people focused on nurturing his life in the face of death. Now, with a full life-expectancy restored, hospice care was required to be removed, returning Phil to the experience of feeling neglected and left for dead. To be sure, Phil represents a rare scenario of how people become eligible to be discharged from hospice care. More typically, when people no longer need hospice, or graduate, as it is often referred, it is because their illness is not progressing as rapidly as anticipated, meaning the hospice team no longer has strong evidence to support a six month prognosis. One might think this is a cause for celebration. I have come to learn it is often quite the opposite. Thomas Knowles was a charming gentleman living in an elegant assisted-living facility. He smiled every time I greeted him, usually in the grand lobby where he was sitting in an armchair with his four-legged walker tucked by his side just within reach. 16
During my routine monthly hospice visits, he would play along with my questions, answering adoringly, “Yes dear. I’m fine dear.” Despite my customary greeting reminding him I am his doctor, I frequently overheard him telling a neighboring resident, “That's my daughter. She makes such a fuss over me but it’s so nice that she visits.” Thomas, like many people who enroll in hospice, began receiving our care after being hospitalized. In his case it was for severe anemia. The source of blood loss was never identified, but it was clear at the time that an 87-year-old man was not likely to fair well with only half the amount of blood in his body he should otherwise have. Despite his ghostly appearance, his vigor remained impressive. In fact, over the nine months I was his hospice physician, his blood levels returned to normal without any hint of a blood disorder. But that was not what his daughter, Emma, was focused on. “I was under the impression when my father enrolled in hospice you would stop everything!” Emma's voice shook with fury. My delight in sharing how well her father had been doing was not what she wanted to hear. “Hospice is not about doing nothing. It is about providing intensive comfort care. My team and I have merely focused on providing your father with that which would give him the best quality of life for however long he has,” I said. "We have all really enjoyed getting to be with him and are sad to have to say goodbye, at least for now." After several minutes of a circular conversation regarding continuing or discontinuing medications to maintain his blood sugar balance and encourage his hemoglobin along, it became clear that the conversation Emma wanted to have wasn’t really about preventing GI bleeding or a diabetic coma. “This isn’t my father anymore!" Emma roared. "He might smile and be pleasant and cute with you, but he used to be a disarmingly intelligent and productive man. Now all he can muster is a ‘Yes dear.’” Silence filled the space between the telephone wires. What was underneath the hostility was deep and undisclosed grief for the father that once was but is no more. Thomas' body roamed the halls like a taunting shadow of the man Emma longed to hold in her arms. “We didn’t want this to be a long drawn out…” the last words of Emma's sentence were lost in a soft sob. “Dementia is hardest on family members," I began. "The person living with dementia is ultimately spared the hardship of bearing witness to two deaths—first the mind, then the body." But it was no use. Emma's need was clear, and I had no way to satisfy her.
SAN FRANCISCO MARIN MEDICINE OCTOBER/NOVEMBER/DECEMBER 2021
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