Doctor and triple amputee wants to change how we face death

The topic wasn’t exactly light, but no one expected it to be.

After all, the keynote speaker for the inaugural James W. Colbert, Jr., endowed lectureship for MUSC’s 2017 Faculty Convocation is Bruce “B.J.” Miller, M.D., a specialist in patient-centered, palliative and end-of-life care and an assistant clinical professor of medicine at the University of California, San Francisco. 

It’s not long into his speech when he asks, “Who hasn’t suffered?”

No hands go up, and everyone knows he has.

The triple amputee was a sophomore at Princeton University when one night, he and some friends thought it was a good idea to climb to the top of a commuter train. Eleven-thousand volts shot through his left arm and down his legs, and the next thing he knew, he was waking up in the burn unit of St. Barnabas Medical Center in New Jersey.

Lisa Saladin, executive vice president for academic affairs and MUSC provost, introduced Miller, recounting a story of a crucial moment in his recovery when a nurse smuggled a snowball inside his burn room – a sterile, windowless environment – even though she knew it was against regulations. 

“That simple act of holding a melting snowball was for him a moment of pure rapture,” she says, quoting a part of Miller’s TED Talk that has received more than 6 million views. “‘In that moment,’ he said, ‘just being any part of this planet, in this universe, mattered more to me whether if I lived or died.’”

Miller went on to graduate from Princeton as an art history major and then became a doctor specializing in palliative care. He now is a nationally recognized public speaker and advocate for improving end-of-life care.

“Since we’re honoring a man who’s been described as a transformative figure on this campus, it seems only right that our inaugural speaker for this lectureship series be transformative in his own right,” Saladin says of the lecture series honoring the tenure of the late James W. Colbert, Jr., as provost at MUSC. “Dr. B.J. Miller is such an individual.”

Art in Healing

Miller’s art history background revealed itself in his keynote address, as he used art to illustrate many of his points. One was a painting of the first surgery that was done under anesthesia at the University of Massachusetts.

“This is when medicine and science got into bed in a new way. It was also a moment when we could separate a person from the body. In so many ways, the scientific approach to medicine has been a wonderful thing. I’m alive because of it,” he says. “But there can be a fallout to this approach, and sometimes the patient can get lost in the shuffle.”

Palliative care is about optimizing the quality of life by anticipating, preventing and treating suffering. What’s interesting about the definition is that it’s specifically talking about the fulcrum of suffering, he says.

“If you think about the rest of medicine, it is focused on an organ or a disease, but this is focused on suffering. That’s remarkable in many ways. This is entirely subjective. I can’t put a probe in you and tell if you are suffering. You, the patient, are the one who shows the suffering. So right out of the chute, this has tweaked the power dynamic in medicine, which I really appreciate.”

Miller tells the health care professionals gathered for convocation that it requires a mental shift in attitude. It’s a systems issue and requires health care professionals to creatively address how to turn the focus from a disease-centered to patient-centered process. 

“We made disease the source of suffering. We started objectifying humans and trying to fix them. But no matter what we do, these things are happening. We have to quit calling dying a failure. It sets up physicians to have powers we don’t, and it sets up patients to think, that by being sick or dying, that’s failing.”

Shame becomes involved when people feel bad about things outside of their control, and sometimes options are put on the table that shouldn’t be there by health care professionals. “We glide past the power of impossibility. A new negligence is offering things to patients that we know aren’t going to happen. I’ve done that. You’re sitting at the bedside, and it’s really difficult, and you want so badly to offer choices,” he says.

“It squanders people’s time. Some things just aren’t possible. Let the impossible stay impossible, and call it as such.”

That’s not to say that it’s all doom and gloom. Palliative care, which is not just for people facing death, is about improving the quality of life for patients and making that the bigger prize. 

“Maybe we can make space for the ways in which we can make life more wonderful. You know that feeling that your day can be turned around just by the way a stranger gives you a smile or holds a door open, or whatever it may be. These little moments where you get to feel life is pretty amazing just by being connected to complete strangers. I just want to name that so we don’t artificially lower our sights.”

Personally, and in his practice as a palliative care physician, he has been amazed by the therapeutic power of the senses to relieve suffering in patients. Anesthesia – in health care – is  critical, but so are aesthetics. “The body is a sack of sensors that helps me move around the planet –  to feel things, smell things, hear things. There’s an immediacy to the senses that is so powerful. It has so much to do with how I enjoy my life."

He says he’s calling on health care to make that connection. “It’s a return to an older brand of medicine before we were overly seduced by the miracles of medicine.”

Showing a slide of Florence Nightingale, Miller summarizes points from her 1859 treatise on nursing that sets the tone for how to care for a patient, covering everything from flowers to floor wax. Such sentiments in today’s modern health care environment can be brushed away.

“But when do you feel super alive? For me it comes in that moment of feeling the sun on my skin or a breeze. It’s the wacky miracle of being alive on this planet. If we can bottle that and give to our patients, it’s a way to keep going and to stay attached to our world.” 

Making peace with the end of life

Health care teams are better equipped to handle the acute cases, intervening and working to solve the problem. But chronic conditions are becoming more the bread and butter of health care as the population ages, he says. He shows a California study about what patients want at the end of life. Factors that scored high were having loved ones present and relieving the family’s financial burden.

When a person is having to adjust to a new health condition or disability or even face the end of life, there can be moments of great reward. “Once you get past the grief of it and the trauma of it, you begin to reconcile the new reality of what you’ve got. It’s a beautiful, creative process. We interrupt that all too often.”

Miller says there is much health care professionals can learn from their patients and a rich interaction that can happen as crises are faced together. Patients often feel like they’re a burden. “One of the sweetest things you can do for your patients is to learn something from them. This is not a one-way street.”

For many, there can be a crisis of meaning at the end of life. “They are trying to make meaning of their situation. You are going to be roped into people’s narratives, and what you say and do can really matter. How we do things really do matter,” he says, pointing out that bedside manner isn’t just a nicety. 

“I also want to put in a plug for meaninglessness. There’s something really powerful about just not knowing. There’s an absurdity in there and a grace, and there’s a moment of pleasure and joy in that, too,” he says. “It’s important to make room for the mystery. I don’t care if you are Albert Einstein, there are things you don’t know.”

Sometimes space just needs to be made for a patient to sit before the mystery of it in communion with others, he says.

“Some of the most powerful moments I’ve had clinically are when I’ve said, ‘I don’t know, but let’s find out together’ or ‘I don’t know, but I’m not going to run away. I’ll be here.’ Those are some of the most potent moments. The most magical moment can be just not abandoning someone.”

To reorient health care and reimagine medical practice, a good goal is to focus on healing instead of just curing, which would make health care providers relevant to 100 percent of the population, 100 percent of the time, he says.

“If we took our goal as healing, not curing, maybe we’d find ourselves further relevant. And maybe we’d find ourselves a better job description. And more to the point, curing is an externally-driven thing, but healing, being whole and being right with yourself, is largely an internally-driven process. It’s not ours to impart. But as a physician, I can accompany people who are healing themselves.

The other important mental shift is to see dying as a normal part of the living process and to proactively find ways to bring joy to that last season in life. “We are ‘the dying’ – all of us. Sometimes I hear us say ’the dying,’ which says ‘I’m not that.’ We need to watch ourselves. We are all dying. We don’t need to artificially separate ourselves.”

For many people, the end of life can even be a welcome moment, he says. 

“Death is what gives our time meaning. Death is not the enemy. We’re going to lose that war. What makes anything precious is that it ends.”