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January 9, 2020

Ezekiel Emanuel: How my father died—and what it reveals about American health care

Daily Briefing
    Editor's note: This popular story from the Daily Briefing's archives was republished on Oct. 20, 2022.

    When Ezekiel Emanuel's 92-year-old father was admitted to the hospital and diagnosed with an incurable, terminal brain tumor, Emanuel insisted that his father, who did not wish to receive further treatment, be discharged and taken home to receive palliative care. Writing for The Atlantic, Emanuel—a health policy expert, medical ethicist, and doctor who advised former President Barack Obama—describes the difficult palliative care process and explains how his father's story is an example of why end-of-life care costs are often unnecessarily high.

    Do palliative and emergency care go together? St. Joseph's Regional Medical Center says yes.

    The diagnosis

    Emanuel writes that, "a few months ago," his "92-year-old father fell" and his "mother could not pick him up." After not being able to get in touch with her brother for assistance, Emanuel's mother called 911, and an ambulance crew transported Emanuel's father to a suburban Chicago hospital.

    After arriving at the hospital, an ED physician ordered a CT scan on Emanuel's father. "A spot on the scan worried [the physician], so he ordered an MRI, which confirmed that a tumor the size and shape of a pear was occupying the frontal lobes of [Emanuel's father's] brain," Emanuel writes. In addition, "a chest X-ray gave the physician some reason to suspect pneumonia—the image of the lungs looked cloudy, though it lacked the focal infiltrates that usually signify that condition—so he admitted my father to the hospital," Emanuel notes.

    When Emanuel arrived at the hospital, he found his father "sitting in a chair, and all sorts of white wires were emerging from under his flimsy hospital gown. His index finger, because of the oxygen monitor attached to it, glowed like E.T.'s." But Emanuel notes that his father otherwise "was acting like himself."

    Upon speaking with a neurosurgeon and a neuro-oncologist about his father's condition and treatment options, Emanuel found out that his father "had a large brain tumor that could not be cured and would end his life." Emanuel explains, "No neurosurgeon or oncologist could change the inevitable. Especially in light of his age, any intervention that involved drilling into his skull and biopsying or removing part of such a big tumor would only worsen his quality of life."

    The decisionand difficultyto receive at-home palliative care

    Emanuel's father, along with his family's support, decided that he did not want to receive any additional medical interventions and wanted to spend his final days at home. "He wanted to die at home having shared his final days with his family," Emanuel writes, adding, "We didn't want to interfere with him talking with his children and grandchildren and playing with his great-grandchildren during the time he had left."

    But Emanuel notes that his father's providers had not asked his father, mother, or brother about his father's end-of-life wishes, nor did they ask whether Emanuel's father had an advance-care directive or a wanted a do-not-resuscitate order.

    Emanuel writes that, ultimately, "it took all [his] expertise and experience to arrange the kind of care [his father] needed—and prevent the medical system from taking over and prescribing unnecessary interventions." For instance, Emanuel notes that when he asked the hospital if his father could receive a palliative care consultation, "the answer was a definitive no," even though it had been "easy for the hospital physician to call a neurosurgeon and neuro-oncologist and for them to assess [his] father." Emanuel writes that the hospital gave him the phone number for its palliative-care service, but he could not call the service until "the next day, during normal business hours, to arrange a future consultation."

    Emanuel's father eventually was discharged and sent home, at Emanuel's insistence, but the hospital "offered no assistance in getting [his father] help at home," aside from a "suggestion that we find a home-care agency to call," Emanuel writes. He notes that his family ultimately was able to find aides to provide home care to his father with help from his "father's former nurse and someone she knew."

    Emanuel's father "spent the rest of his time at home and was able to say goodbye to everyone," Emanuel writes.

    Why end-of-life care is so expensive

    Emanuel writes that his father's story exhibits why end-of-life care in the United States is so costly, noting, "It has less to do with physicians' and hospitals' financial incentives to admit more patients and perform more medical interventions, and more to do with the effort required to order and provide human care."

    For example, Emanuel writes, "It was easy for the physician to prescribe my father two antibiotics for his supposed pneumonia even though he had none of the symptoms … [b]ut it was impossible for the physician to order an in-home aide to help my father shower, get to and from the bathroom, and navigate the stairs to the living room and kitchen."

    He explains, "For providers, ordering tests and consultations and prescribing antibiotics is easier than listening to and diagnosing the particular needs of the person in front of them. It is easier for the medical system to marshal all sorts of costly interventions—MRI scans, hospital admissions, neurosurgeons, cancer chemotherapy, and the rest—but harder, if not impossible, to accept the inevitable and provide symptom management, grief counseling, and home care to patients and their family."

    According to Emanuel, his family has not yet received all the bills for his father's care but, so far, his roughly 12 hours spent in the hospital cost $19,276.83. In comparison, the more than 200 hours of home care his father received over 10 days cost $6,093.

    A need for change

    "Many Americans are puzzled about why end-of-life care costs are so high, and why physicians cannot seem to reduce them," Emanuel writes, adding, "My father's story is the answer." He concludes, "Until the [medical] system takes account of the whole patient and provides the whole package of humane care as the default … Americans will not be able to finally change end-of-life care and reduce those costs" (Emanuel, The Atlantic, 1/2).

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