January 6, 2017

How a brush with death inspired this MD to rethink how we die

Daily Briefing

    Editor's note: This popular story from the Daily Briefing's archives was republished on May 13, 2019.

    A doctor's near-death experience in college pushed him to see the value of life in new ways and radically rethink how we care for the dying, Jon Mooallem writes for the New York Times.

    Download URMC's end-of-life conversation prompts

    When he was a sophomore at Princeton University, B.J. Miller, who now is a palliative care physician at University of California, San Francisco's cancer center and former executive director of a pioneering hospice called the Zen Hospice Project, lost both of his legs below the knee and one arm below the elbow. A night of drinking with friends led him to the roof of an electric train car; as he stood precariously on top, a bolt of electricity jumped from the overhead wires into his arm and through his legs. Days later he woke up in a hospital, and soon after that his burned limbs were amputated.

    Miller drew early strength from his mother, a polio survivor who had used a wheelchair since Miller's childhood. Miller had never seen her as "diminished," Mooallem writes. As Miller was wheeled past her on his way to surgery, he whispered to his mother, "Now you and me have more in common."

    This was just the first sign that Miller would grapple with his injuries in an unconventional way. He suffered, but was determined to see his struggle as "a variation on a theme we all deal with—to be human is really hard."

    As time passed, Miller embraced his situation. He stopped covering up his prosthetics, even removing their flesh-colored covering to reveal the sleek carbon fiber underneath, and began to see his injuries as a transformative opportunity. "Parts of me died early on," he says. "And that's something, one way or another, we can all say. I got to redesign my life around this fact."                                                            

    The Guest House

    Miller's ruminations on death, loss, and the value of life have deeply informed his approach to medicine. Through his work with the Zen Hospice Project, he says his goal is to "de-pathologize death."

    A quick tour of the Guest House, Zen Hospice's residential facility, helps explain what he means. It's a large Victorian house, has only five rooms, and always has a pot of tea on the stove. "The tiny nursing station is literally tucked into a kind of cabinet in the hall upstairs," Mooallem writes. "The house, in other words, feels very much like a house, not a hospital."

    Volunteers play an important role and function almost as "existential nurses," Mooallem writes. They sit with residents and provide support—but their training emphasizes accepting suffering rather than fighting against it. Miller says doing so helps residents feel what they need to feel during their final days: "You train people not to run away from hard things, not to run away from the suffering of others."

    Residents occupy their time with knitting, episodes of "Wheel of Fortune," and recipe-sharing. Josh Kornbluth, a well-liked volunteer, says the Guest House supports patients with "the quotidian—the holding of someone's hand, bringing them food that's been beautifully arranged on the plate, all the small ways of showing respect to that person as a living person and not as 'predeceased.'"

    The life and death of Randy Sloan

    The story of Randy Sloan's final days shows how the Zen Hospice Project's philosophy can comfort younger and older patients alike.

    Randy, 27, was fighting a highly aggressive cancer. He didn't have long to live and resisted moving into a hospice.

    By chance, Miller already knew Randy, who was a motorcycle mechanic and had built Miller's custom motorcycle. Miller visited his old acquaintance in the hospital to share why moving into the Guest House could help him meet his end-of-life goals.

    Miller told Randy how the Guest House could help him stay in touch with part of himself he cherished most—friends and family. Friends could visit anytime, and Randy could venture out whenever he wanted to, as long as he was accompanied by somebody.

    The constant care and attention of volunteers and staff freed Randy's friends to do what was most important to him: creating a sense of normalcy. "They sat around playing video games and drinking Bud Light, just like they always did, or they swept Sloan around the city for dinner at his favorite restaurants," Mooallem writes. Even as Randy's health deteriorated rapidly, he found ways to connect with those he loved—for instance, joining a dockside party on a boat, a near-weekly summer tradition among his friends that Randy was eager to join.

    Randy still experienced suffering and pain, and he died eight days after he arrived at the Guest House. But at the same time, Mooallem writes, "Zen Hospice had done something almost miraculous. It had allowed Sloan and those who loved him to live a succession of relatively ordinary, relatively satisfying present moments together, until Sloan's share of present moments ran out."

    Or, as Miller puts it, "Randy got to play himself out" (Mooallem, New York Times, 1/3).

    Next, get URMC's end-of-life conversation prompts

    When it comes to end-of-life care, most organizations struggle to meet patients' needs. In a recent poll, 87% of Americans age 65 and older said that they believe their doctor should discuss end-of-life issues with their patients; however, only 27% of those polled had actually discussed these issues with their doctor.

    Download URMC's conversation prompts to start improving end-of-life care for patients.

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