Wednesday, June 8, 2011

San Francisco doctor who is triple amputee finds his calling in palliative care

From the San Francisco Chronicle:


Dr. BJ Miller is only 40 but he thinks about death a lot. He is the new executive director of the Zen Hospice Project in San Francisco and a palliative care specialist at UCSF Medical Center. He is also a triple amputee, co-founder of a tea company, owner of a farm in Utah and a newlywed who still looks like the Ivy Leaguer he once was.

"I have no fear of death," Miller said. "I have a fear of not living my life fully before I die."

On Nov. 27, 1990, he came close to dying. Miller, then a sophomore at Princeton University, got together for drinks with two close friends he'd made on the crew team. Around 3 a.m., they were walking to a convenience store when they decided to climb an electrified shuttle train parked on campus.

"I jumped on top," he recalled. "I had a metal watch on and I was very close to the power source. The electricity just arced to the watch. Sadly, the train was called the Dinky - of all things to lose a limb to."

As a result of Miller's encounter with 11,000 volts of electricity, his left arm was amputated below the elbow and his legs below the knees. He still has flashbacks to the explosion and remembers the difficulties of fitting his nearly 6-foot-5 frame into a helicopter bound for a burn unit.

After several months, he returned to Princeton and graduated with his class in 1993. Two years later, the university and shuttle operator, New Jersey Transit, agreed to pay him a multimillion-dollar settlement, which included safety upgrades to the train station where previous incidents had occurred. Over time, Miller has undergone many operations and often experiences nagging discomfort, as well as significant pain on occasion.

"BJ's doctor said, 'When people have these life-altering injuries, it doesn't change their nature,' " said Miller's mother, Susan Miller. "BJ was a sweet, affectionate, loving child. It didn't change who he was at all."

It might not have changed Miller's nature, but it refashioned him in ways that inform what he does today. "I learned so much," he said. "Particularly about perspective. It's not what you see but how you see it."

His father, Bruce Miller, said, "BJ has always had incredible insight into people."

It's an indispensable quality in the doctor's current line of work.

"BJ is an extraordinary physician," said Dr. Mike Rabow, director of the Symptom Management Service at UCSF. "Perhaps the best I've ever seen at understanding the pain and suffering of others, bearing witness to it and helping people face it and begin to heal. The most remarkable part is that BJ is filled with joy and humor."

Miller said he largely avoided self-loathing and self-pity after the accident because of his mother's example. She was diagnosed with polio as a baby and relied on a brace and crutches when her son was growing up. Two decades ago, she developed post-polio syndrome and now uses a wheelchair most of the time.

"BJ realized that disability doesn't determine who you are," said Susan Miller, who still recalls what he said after learning he'd lose three body parts. "He told me, 'Mom, now we'll have even more in common.' It was wonderful."

Justin Burke of Seattle, who later co-founded Tribute Tea Co. with Miller, visited his old boarding-school roommate in the hospital a few weeks after the accident. "His left arm was the size of a watermelon," Burke said. "But he wanted a mountain bike for Christmas."

This wasn't a fanciful notion. After he recovered, Miller hiked, bicycled and competed on the U.S. volleyball team in the 1992 Summer Paralympics in Barcelona.

"BJ's journey has taught me to appreciate things many people take for granted - and I never will because of him," said Pete Austin, a senior producer for "Nightline" at ABC News in New York, who was with Miller when the accident happened and helped bring his body - smoking and bleeding - down from the train.

Bruce Miller Jr., who goes simply by BJ without punctuation, was born in Chicago and grew up mostly in its suburbs. He described himself as a melancholy and overly sensitive "mama's boy," who was insecure but made friends quickly. His father was a successful businessman, the family was affluent, and Miller was handsome, even working as a model for a while. But he said he felt like a misfit.

"Now I'm grateful for being a little bit of an outsider," he said. "It made me question the reality I was living in. Life was just a little too easy. I could feel myself devolving before I'd even evolved, so I elected to go away to boarding school and become more independent."

At St. George's School in Rhode Island, Miller turned into a recluse and a bookworm. But by the time he graduated in June 1989, he'd joined choir, made a few friends and earned top grades.

"I had come to realize how much of my angst was self-propelling," he said. "And I learned how to drop some of those ruminations."

Inspired by the Tiananmen Square protests in Beijing a few months earlier, he planned to major in Chinese and Asian studies at Princeton. "It dovetailed nicely with being a suburban boy, boarding school, all this zone of privilege and homogeneity," Miller said. "I was very attracted to something foreign, and Tiananmen awakened in me a human rights consciousness."

He switched to art history after his accident, focusing on how music served as inspiration in visual art of the early 20th century. "It's all about the human condition and what people do with their humanity," he said. "Artists are dealing with that subject all the time."

Art played a major role in his recovery. For example, Miller used to put a sock over his left arm because he thought it was grotesque, and he wore foam covers over his prosthetic legs. He stopped his attempts at concealment after studying the style of building known as the Chicago School of architecture.

"They let the structure do its own thing," said Miller, showing off his carbon fiber prosthetics. "I found that to be an extraordinarily therapeutic concept."

He made another discovery as well: "I'd always been aware that the way people treated me had nothing to do with my internal life," he said. "The world saw me as over-privileged. This changed all that. I didn't have to explain, 'Oh, I suffer, too.' It was very handy. And I was inclined to look for the silver lining."

After graduating from Princeton, Miller worked in the archives of the Art Institute of Chicago and spent several months in Paris as an intern with the State Department. His service dog, Vermont, accompanied him.

"We were together for 11 years, 24 hours a day," he said. "When I couldn't find the words for what I was feeling, I'd go play with him and everything was fine. It remains the single most profound relationship of my life."

When it was time to find a calling, Miller chose medicine because he could use his experiences to connect with people and he felt an affinity for anyone going through an illness. He took pre-med courses in Denver and at Mills College in Oakland before starting medical school at UCSF in 1997, with the notion of entering rehabilitation medicine. He changed his mind after doing a rotation in that field.

"I felt like a poster child," he said. "When I'd walk out of the room, I'd hear some family member say, 'See, he can do it.' And I knew what those guys needed was to wallow and get angry. They didn't need some jackass with really white teeth saying, 'Hey, you can climb a mountain.' They just wanted to learn how to take a leak again."

He finished medical school in 2001. It was a difficult time. He was devastated by the suicide the previous year of his lone sibling in her New York apartment, just shy of her 33rd birthday. The news about his sister's death came in a call he got on the way to a follow-up appointment after yet another surgery. He started questioning his decision to be a doctor, but an internship at the Medical College of Wisconsin changed everything: He learned about palliative care, which uses a team-oriented, holistic approach to treat the symptoms of illness and relieve pain and suffering.

"It was very immediately clear that this was the place for me," Miller said. "Being a full human being has a lot to do with suffering."

He worked two years at Cottage Hospital in Santa Barbara and was a hospice and palliative medicine fellow at Harvard Medical School for a year before joining UCSF in 2007. Dr. Stephen McPhee, who retired in January as a professor of medicine at UCSF, helped recruit Miller.

"He has great presence and a light touch," McPhee said. "It might seem inappropriate for end-of-life care but it is exactly right. He's a wonderful teacher, too. He has the ability to move an audience."

McPhee said Miller and the 24-year-old Zen Hospice Project are a good match.

"Compassion and open-heartedness are BJ's defining characteristics," McPhee said. "Being disabled does not define him. But from a patient's point of view, seeing him walk into the room, they get it that he gets it. He has obviously been through a lot."

Karen Schanche, a UCSF clinical social worker and psychotherapist, said Miller is especially effective with older men not prone to sharing their feelings.

"One veteran, a Marine with metastasized pancreatic cancer, was really not into talking or being vulnerable," Schanche said. "He looked at BJ and started tearing up. ... There is a small opening to reach into with people, and BJ is not afraid of that kind of intimacy."

But Miller knows it can be dangerous. "These quick spelunking exercises are an occupational hazard," he said. "If you don't have time to process them and crawl fully out of the hole and shake off the dust before you go back down again, you are operating from a deficit."

These days he is working 70 to 80 hours a week, given his full-time job at the Zen Hospice Project, his outpatient clinic work at UCSF, and late-night home visits to people who are dying. He's hoping things will settle down soon.

"He can't say no. And he sees himself as an usher who can take people through a transition in their lives," said the former Jori Adler, 33, who married Miller in Inverness on Sept. 11 - his parents' anniversary. At the end of October, the couple threw a bash for 180 in Palm Springs. In January, they honeymooned in Chile and Argentina.

Jori Miller met her future husband in 2007 at a party in Los Angeles, where she worked as an associate producer in television. Now she's pursuing a master's degree at Sonoma State University and wants to be a marriage and family therapist. They live in Mill Valley with a dog named Maysie and three cats: Zelig, the Muffin Man and Darkness. The doctor never got another service dog after Vermont died.

Miller loves to go to art museums and movies, ride his bicycle and drive for hours in his Audi station wagon. Pizza is his favorite food and his tastes in music range from Frank Zappa and The Who to jazz and chamber music. Eight years ago, he bought a 10-acre farm in Boulder, Utah.

"It's almost like a plan B," he said. "It's somewhere I can go that doesn't operate by the same rules as in the city. It looks like a different planet and makes me feel nice and small, where I'm thinking on geological time."

The Zen Hospice Project's renovated Guest House reopened in September after a six-year closure and formed a partnership with UCSF, which pays for two beds for its patients. UCSF medical students will begin rotations there this summer, joined eventually by UCSF fellows in hospice and palliative medicine.

"Our vision is to marry the medical and social models of care," said Miller, who has been an attending physician at hundreds of deaths over the years. "Bring in the best of medical science while beefing up the nonmedical components."

Those components include a cadre of trained volunteers and programs for bereavement support, self-care for caregivers and legacy work, such as writing letters to grandchildren. The six beds in the Guest House are reserved for people with a prognosis of six months or less to live.

Miller is spiritual but not a Buddhist. However, he finds Buddhism "beautifully inarguable," especially because it sees kindness as the antidote to suffering - a principle that guides his work.

"A big part of my job is to remind people about the preciousness of time," he said. "You don't want to preordain or prognosticate, but you don't want to abdicate your role either. It's this tender little dance between leading and following a patient and their family."