Tuesday, January 3, 2017

One Man’s Quest to Change the Way We Die

Early in June, Sloan was readmitted to U.C.S.F., and Baldwin, his mother, returned to San Francisco to be with him. Miller saw both of them for an appointment that morning, and when he walked in, it hit him how quickly Sloan’s body was failing: In roughly six weeks, Sloan had gone from a functioning, happy 27-year-old, walking his dog up a hill, to very clearly dying. His decline was relentless, by any standard. At no point had any doctor been able to give him a single bit of good news. Even now, Sloan’s oncologist was reporting that after the first dose of chemotherapy, his heart was likely too frail to take more. (...)

Good palliative-care doctors recognize there’s an art to navigating clinical interactions like this, and Miller seems particularly sensitive to its subtleties. In this case, Miller realized, his job was to “disillusion” Sloan without devastating him. Hope is a tricky thing, Miller told me. Some terminal patients keep chasing hope through round after round of chemo. But it’s amazing how easily others “re-proportion,” or recalibrate, their expectations: how the hope of making it to a grandchild’s birthday or finishing “Game of Thrones” becomes sufficiently meaningful. “The question becomes,” Miller says, “how do you incorporate those hard facts into your moment-by-moment life instead of trying to run away from them?”

At an initial appointment with Sloan, two weeks earlier, Miller made the calculation not to steer Sloan toward any crushing realizations. He worried that if he pushed too hard, Sloan might feel alienated and shut down. (“I needed his allegiance,” Miller later explained; it was more important, in the long term, that Sloan see him as an advocate.) At the second meeting, Miller remembered, “I felt the need to be more brutal.” And, he imagined, by now Sloan would have started to suspect that the story he’d been telling himself didn’t fit the reality. “I just said, ‘Randy, this is not going like any of us want for you,’ ” and Miller began, calmly, to level with him.

Traveling was out of the question, Miller explained; best guess, Sloan had a few months to live. “You could just watch his world collapse,” Miller recalled. “With each sentence, you’re taking another possibility away.” Sloan started crying. And yet, Baldwin also knew that her son had been waiting for his doctors to say this out loud. Sloan couldn’t understand why, if he had Stage 4 of an incurable cancer, he was still taking 70 pills every day, with the doses laid out in a dizzying flowchart. And as Miller went on, he was stunned by how well Sloan seemed to be absorbing this new information, without buckling under its weight. “He was actually kind of keeping up with his grief, reconciling the facts of his life,” he says. “It was a moving target, and he kept hitting it.” Baldwin told me: “Randy was a simple guy. He would say to me, ‘Mom, all I want is one ordinary day.’ ” He was sick of being sick — just like he’d been saying. He wanted to go back to living, as best he could.

Quickly the conversation turned to what was next. A standard question in palliative care is “What’s important to you now?” But Sloan didn’t muster much of a response, so Miller retooled the question. He told Sloan that nothing about his life was going the way he expected, and his body was only going to keep breaking down. “So, what’s your favorite part of yourself? What character trait do we want to make sure to protect as everything else falls apart?” Sloan had an immediate answer for this one. “I love everybody I’ve ever met,” he said. (...)

Sloan got apprehensive when Miller started telling him about Zen Hospice’s residential facility, known as the Guest House; it sounded as if it was for old people. But Miller explained that it was probably the best chance he had for living the last act of his life the way he wanted. His other options were to tough it out at home with two weekly visits from a home hospice nurse or go to a nursing home. At Zen Hospice, Sloan’s friends would always be welcome, and Sloan could come and go as he pleased as long as someone went with him. He could eat what he wanted. He could step out for a cigarette. He could even walk up the street and smoke on his own stoop — the Guest House was just two blocks from Sloan’s apartment. Besides, Miller told him: “It’s where I work. I’ll be there.” (...)

I never met Randy Sloan. But as I heard these stories in the months after his death, it became impossible for me not to fixate on the unfathomability of his interior life, or anyone’s interior life, at the end — to wonder how well Sloan had come to terms with what was happening to him, how much agony he might have felt. Erin Singer, the kitchen manager, told me that Sloan seemed intent on keeping his distance from the Guest House. Usually, she said, he sat under a tree in the park next door, silently smoking a cigarette. And it struck Singer as significant that Sloan “didn’t sit looking at the street or the garden. He always sat looking at the house,” as if he was wrestling with what it would mean to go inside.

The question that was unsettling me was about regret: How sure was everyone that Sloan didn’t have desires he would have liked to express or anguish he would have liked to work through — and should someone have helped him express and work through them, instead of just letting him play video games with his friends? My real question, I guess, was: Is this all there is?

Later, when I admitted this to Miller, he told me he understood this kind of anxiety well, but was able, with practice, to resist it. “Learning to love not knowing,” he said, “that’s a key part of this story. Obviously, I don’t know the depths of Randy’s soul, either. Was Randy enlightened or did he just not have the right vocabulary for this, if any of us do? We’ll never know. And maybe the difference between those things is unimportant. I think of it as: Randy got to play himself out.”

This is a favorite phrase of Miller’s. It means that Randy’s ability to be Randy was never unnecessarily constrained. What Sloan chose to do with that freedom at the Guest House was up to him. Miller was suggesting that I’d misunderstood the mission of Zen Hospice. Yes, it’s about wresting death from the one-size-fits-all approach of hospitals, but it’s also about puncturing a competing impulse, the one I was scuffling with now: our need for death to be a hypertranscendent experience. “Most people aren’t having these transformative deathbed moments,” Miller said. “And if you hold that out as a goal, they’re just going to feel like they’re failing.” The truth was, 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.

by Jon Mooallem, NY Times |  Read more:
Image: Todd Hido for The New York Times