The Benefit of Hospice
Sometimes, being open to the unexpected is essential for providing what is needed.
And sometimes, even when the unexpected happens, it may not be at all what is wanted.
“Great news! You’re not dying.” Granted, this is not a frequent phrase a hospice physician gets to say. Yet, on the occasions it has passed from my lips into the stunned ears of another, it has surprisingly rarely been greeted with ecstasy. Instead, patients and families have become angered, frustrated and even disappointed.
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Phil Havler is a young 40-year-old diagnosed with liver failure. Despite the advanced state of the disease, he is ineligible for an organ transplant due to his continued misuse of substances, all of which make him eligible for hospice. His years of chronic pain have recently become a thing of the past thanks to a variety of hospice interventions, including acupuncture, massage therapy, an intensified pain medication regimen, and perhaps most importantly, Andres, his home health aide. Despite my expectation that Phil will be elated to learn his liver has recovered (it can do that on occasion, as it's a fairly resilient organ), Phil is 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 is a long-term-care resident in an overfilled, understaffed, 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 offers him a built-in circle of companionship filled with people focused on nurturing him in the face of death. Now, with a full life expectancy restored, hospice care must be removed, returning Phil to feeling neglected and left for dead.
To be sure, Phil represents a rare example 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 an illness, such as dementia, is not progressing as rapidly as anticipated. One might think this is a cause for celebration. I have come to learn it is often quite the opposite.
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Thomas Knowles is a charming gentleman living in an elegant assisted-living facility. He smiles every time I greet him, usually in the grand lobby where he is sitting in an armchair with his four-legged walker tucked by his side just within reach. During my routine monthly hospice visits, he plays along with my questions, answering adoringly, “Yes dear. I’m fine dear.”
Despite my customary greeting reminding him I am his doctor, I frequently overhear him telling a neighboring resident, “That's my daughter. She makes such a fuss over me, but it’s so nice that she visits.”
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