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 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. 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. 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.

Thomas had landed himself inside the ultimate Medicare doughnut hole: too healthy for hospice but fragile enough that Emma and I both knew it was only a matter of time before something else was going to break. Hospice eligibility is defined within categories of major disease processes such as cancer, heart disease, lung disease, etc. The problem is that apart from reimbursement models, the benefit and guidelines have not been meaningfully updated since the hospice benefit was created in the 1980's. Yet how we die has dramatically changed. One of the most striking changes is in the increased numbers of people living with dementia. Dementia, unlike other diagnoses, is especially difficult to prognosticate. It isn't enough for a person to become forgetful and confused or even lose their ability to speak. They also must have an additional significant event that acts as a herald of sorts to establish a prognosis of six months or less. This event is either a series of hospitalizations, frequently the result of falls which may be complicated by broken bones, or infections such as pneumonia due to losing the ability to effectively swallow. Hence, for people living with dementia inside the Medicare doughnut hole, especially residents living in facilities like Emma's father, where the decision to call 911 is no longer in the hands of the family, people like Thomas routinely end up on the default path back to life-prolonging medical care that hospitals are built to automatically provide. The machinery of medicine is difficult to unplug. Despite its well-documented excess both in spending and in causing unintended distress at the end of life, the automatic valuing of healthcare to focus on sustaining the body before taking into account the soul is what continues to repave this well-tread path of curing, all too often blind to its assault on healing. It is long overdue for the benefit of hospice to be recognized and valued for its ability to far exceed what today's hospice benefit will allow. It is time to align goals of care with the care that is possible rather than the other way round. The population that will benefit from hospice is growing. It is time for the hospice benefit to grow up and match the need.

Dawn M. Gross, MD, PhD is with the UCSF Palliative Care Service, ANX Hospice Medical Director, and Co-Founder/CEO of www. dyalougues.com.