A week before Frank Shor died, his wife, Susan, gathered their three adult sons in a small meeting room on the seventh floor of the Baylor Medical Center in Dallas. Frank, a 64-year-old lawyer and member of the Farmers Branch school board, had been living with leukemia for two years—hiking and biking and working full time, even through the rigorous bone marrow treatments—but by early December he’d been in the hospital for nearly two months. Then it seemed like one complication after another, and Frank was in and out of consciousness. There were still so many different doctors, though, with so many different decisions to make. Susan, a nurse and natural caretaker, was feeling overwhelmed by it all.
“I just don’t want to make any mistakes,” she said that morning before the meeting. “It’s one thing when you’re making decisions about your own life, but when it’s someone else, someone you love, it’s so much harder.”
That’s why she’d asked her sons to meet Dr. Robert Fine, the head of the palliative care program for the entire Baylor Scott & White system. Sitting in the small room, waiting for the doctor, she told her sons to have questions ready. The oldest, 32-year-old Adam, was there with his soon-to-be wife, Jessica. Elliott, the middle son, was FaceTiming into the meeting from Colorado through Adam’s phone. The youngest son, 24-year-old Matthew, sat next to his mother and squeezed her hand.
Dealing with so many people in the worst moments of their lives, often at the end of their lives, seems like it would be daunting, soul-sucking. But Fine has done exactly that, with an awe-inspiring sense of peace, since the mid-’70s.
When he arrived, Fine was wearing a gray jacket, a striped shirt, and a tie. He’s a calming presence, with a deep voice and a methodical manner cultivated over nearly four decades of treating the gravely ill. He introduced himself, shook hands with everyone in the room, and sat down in a chair across from Adam.
Fine started by explaining the differences between palliative care and hospice. “This is not hospice,” he told the family. “We’re not necessarily stopping treatment.”
Palliative care is a relatively new field of medicine dedicated to addressing quality-of-life issues that occur during the course of a serious illness. His team comes in to consider other factors, to ask the patient and family about goals beyond merely prolonging life or finding a “cure.”
Fine told the Shor family that his job is to treat suffering in all its forms. “That’s physical, emotional, social, and spiritual,” he said. Part of his job, too, is to make sure the patient and the patient’s loved ones fully understand the diagnosis. Doctors spend a lot of time in medical school learning about the human body and how various illnesses manifest. They don’t spend a lot of time learning how to talk to people they barely know about life and death. Dealing with so many people in the worst moments of their lives, often at the end of their lives, seems like it would be daunting, soul-sucking. But Fine has done exactly that, with an awe-inspiring sense of peace, since the mid-’70s. To his patients, he’s part interpreter, part guide, part angel of mercy, someone who has all the medical knowledge of a veteran physician combined with the wisdom of a philosopher and the demeanor of a clinical psychologist. He’s something of a star in this burgeoning field—and across the Texas medical community. Other doctors refer to him with a reverence usually reserved for legendary medical pioneers like Joseph Lister and Jonas Salk, comparisons that would certainly make the humble Fine cringe.
Through his roles on state and national medical commissions, Fine has shaped the way Texans approach end-of-life planning. You don’t want to think about your own death. But Fine and his team—and the entire palliative care movement—want you to think about what you value, what you want to do with your remaining time if you’re among the preponderance of Americans who die from a serious illness like heart disease, cancer, stroke, or Alzheimer’s. Once the outcome is clear, would you prefer to spend your last days in a hospital room, attached to machines? Or at home, eating chocolates, surrounded by family?
These are the types of questions Fine faces every day.
Most doctors start off as science majors in college, usually biology or chemistry. But Robert Fine was an English literature major at UT Austin. “It’s philosophy for people who like plot and character development,” he tells people when the subject comes up. He had more than enough science classes to get into medical school, though.
His parents had always stressed to him the value of, as he puts it, “the moral life”—doing what’s right not only when it’s easy but when it’s hard. His mother reminded him often that “ ‘love’ is a verb,” something that demands action and not just words. But it was also important to his parents that their son have a good job.
“My father used to talk to me about the difference between a vocation and an avocation,” he says.
Fine started medical school at UT Southwestern in 1974 to please his parents, but he hated that first year so much that he debated dropping out and going to law school. He even took the LSAT. But then he started reading about issues that most students weren’t thinking about, like the birth of hospice and the 1976 court case of Karen Ann Quinlan. She’s the New Jersey woman who, after a mix of pills, alcohol, and radical dieting, lost consciousness and slipped into a vegetative state. When her parents eventually asked hospital officials to remove their daughter’s ventilator—what they saw as “extraordinary means” to keep Karen alive—the local prosecutor threatened to bring murder charges. The family filed a lawsuit, and the case worked its way up to the New Jersey Supreme Court before the ventilator was removed.
The ethical and legal and moral debates fascinated him. He’d always been drawn to philosophical discussions. Before his second year of medical school, when most students were in labs, Fine took a community health elective that had him working outside of the hospital, in people’s homes, seeing what living with serious illness looked like. At the time, it was common practice to do CPR on nearly everyone who died, sometimes even after rigor mortis had set in. It seemed so pointless. And when he asked why they were doing it, he was told it was “good practice.”
During his time at Baylor, one particular failed CPR attempt left him tearing up in the hallway. One of the hospital chaplains saw him and put his arm around the young doctor. “Fine,” he said, “you know what your problem is? The problem with all you doctors?”
“No, sir,” Fine replied.
“You think you’re God, but you’re not. It isn’t your fault the patient died. Death is God’s final healing for us all.”
That’s the moment Fine realized how much he could learn from the hospital chaplains. The interaction got him thinking about one of the mantras he still chants to students, residents, anyone who’ll listen: “Sooner or later,” he says, “death is not a medical problem to be solved. It’s a spiritual problem to be faced.”
He had planned to take three months off after his residency to study for the boards, but a mentor of his had a heart attack and asked him to look in on his patients in a nursing home. When Fine got there, he realized he’d treated some of those people in the hospital. And life at the home seemed pretty miserable. He remembers one patient in particular asking why they’d saved him from death. He told Fine that he wished they hadn’t.
He knew there had to be a better way.
watching a palliative care team meeting means seeing a collection of people who have, for all their own reasons, chosen careers that force them to deal with death on a near daily basis. Most have backgrounds in liberal arts or humanities, like Fine. His team in Dallas has a dozen or so members, a mix of doctors, chaplains, nurses, social workers, nutritionists, and child care specialists. Together, they handle about 25 to 30 cases at a time, with new referrals coming in daily.
All of their active cases involve patients diagnosed with something likely to kill them, but they range in ages, illnesses, needs, and conditions. Some are in the final throes of life, likely to die within days or hours. Some will transition to hospice care soon. Some need help talking to their children about what’s going on. Some need help balancing the treatments to fight their illnesses and the treatments to fight all the side effects. Sometimes a surgeon needs a palliative care team member to step in when someone in a patient’s family starts yelling. A few palliative patients have been living somewhat regular lives, mostly outside of the hospital: working, running errands, managing symptoms for years.
Fine is effusive with praise for his team and for the other early palliative pioneers around the country. There was no palliative care board certification until 2008, and it barely gets mentioned in medical school. Nearly a decade later, only two-thirds of hospitals with 50 beds or more have a palliative program. In Texas, though, where certain members of the Legislature are perpetually fearful of dreaded “death panels,” fewer than half of hospitals have any kind of palliative care program. And studies show that 70 percent of adults in America have still never heard of it. The biggest challenge is explaining that it’s not just hospice, that it’s a wide array of services aimed at treating patients’ quality of life.
The entire field arose in response to the advancements in medicine. With improvements in drugs and surgery and protocol, medical science is increasingly capable of extending human life. But as Fine learned early in his own life, those treatments, that extension, exacts a physical, emotional, and financial toll. (Upward of half of all healthcare costs are accrued in the last few years of a patient’s life.) The first hospice in America appeared in the mid-’70s, and it was 20 years later before the palliative movement launched.
By the early ’90s, Fine had been practicing at Baylor for more than 10 years. He was certified in both primary care and geriatrics, and he worked on a committee that offered some of the first end-of-life ethics consults anywhere in the nation. He got to know other doctors in the field and traded notes on best practices. He even tried to start a small in-house palliative care at Baylor back then, but the idea was too new and other uses for that space were more profitable.
By 2004, the administration was ready to try a palliative program again. (Fine had consulted as Parkland initiated a palliative program a few years earlier.) At first, most of the physicians were part time, shared by other departments. But after a year, studies showed that the program actually saved the hospital money. Other studies of other programs have shown similar results. As doctors have more precise conversations with patients—not just in a moment of crisis, but long before—there’s less futility in the system. Fewer expensive drugs. Fewer expensive procedures.
Though the finances are important for palliative care to be sustainable, Fine doesn’t bring up that point often. For him, it’s a matter of dignity.
talking to the shor family last december, Fine was careful and thoughtful and soft-spoken. He was, at turns, funny and serious, precise and poetic. He assured them that there are ways to tell if someone is suffering physically even when they can’t communicate, and that Frank wasn’t in pain. Susan began to cry and Matthew put his arm around her. Fine said that if Frank started showing any signs of discomfort, he’d “crank up the painkillers.”
After a few minutes, Fine sat back and listened. Most doctors spend a lot of time talking to patients and their families but not so much time listening. That’s why patients don’t always understand what’s happening to them, even after a doctor explains it. Adam, a tall tech consultant based in the Denver area, wanted to know his father’s prognosis. Fine nodded.
Frank had been pretty healthy a few weeks ago, all things considered, Fine said. Then there was a blockage of some sort, possibly a clot, some blood pressure issues, a perforation of the bowel, breathing problems. They were hopeful, but, at this point, it was impossible to know if he’d recover. Doctors thought there was a chance he might be up and moving again in a few weeks. “The crystal ball isn’t perfect,” Fine said.
Adam asked how much credence they should put in his father’s decision-making at the moment. “We have to be very careful about getting meaning from Frank,” Fine said. Matthew mentioned that he had asked his father just that morning if he remembered his coming in yesterday and that Frank had replied in the affirmative. Fine explained that sometimes you can mistake an involuntary sound or movement for an answer. You have to ask gibberish questions as a gauge to know for sure. “Did you ask him if he remembered going to Mars?” Fine asked.
The doctor said that from the stories he’d heard about Frank—a tenacious school board crusader, a man who cared about the environment and the planet’s future, a man who used to bike long distances through the summer heat—it seemed like he’d want to keep fighting at this stage. At least until they knew more. Fine recommended a “full code,” a hospital-speak order to attempt full resuscitation if his heart or lungs stopped working. But, the doctor said, “There should be some parameters.”
If the cancer came back, would they fight it again? If these complications led to permanent brain damage that would prevent Frank from doing the things he loved, would they want to keep battling?
“I don’t think he wants to go like his father,” Adam said. “His father went in pieces.”
“We don’t want people whittled away at,” Fine said. “I’m not a fan of that.” Fine reminded them that he was there as an adviser, that the decisions were still theirs. It would come down to what kind of quality of life Frank would be happy with. “That’s going to be different for everyone,” he said. “Some patients are content as long as they know they can have a glass of scotch at the end of the day. As long as that’s possible, they’ll fight for that.”
When he said the word “scotch,” Susan smiled. “Dad would like him,” she said.
About 45 minutes into the meeting, Fine looked around at this sweet, loving family. “There’s one other thing you need to hear,” he said. “Never be surprised if something catastrophic happens. Your dad is sick. He’s really sick.”
After an hour or so, there were no more questions. Both sons in the room stood up and shook Fine’s hand again, and Elliott thanked him through the phone. They knew he couldn’t save their father, but Fine, with his calm voice and deliberate, candid approach, was able to assuage some of the confusion and anxiety and dread.
As Fine sat in the audience, listening to the story of Peg, he was moved to the verge of tears. He’s had thousands of patients at this point, but he still feels an emotional connection with every case, every story he hears.
In February, executives at Baylor Scott & White hosted a luncheon at the Sheraton in downtown Dallas to announce that they were implementing a systemwide palliative program based on the one at the Dana-Farber Cancer Institute in Boston. It will be the largest system to install a comprehensive palliative care training program anywhere in the nation. Training has only just begun, but the idea is to not only provide palliative specialists at hospitals across the state, but to equip doctors in all sorts of fields, from oncology to internal medicine, with the communication techniques Fine preaches. Doctors will ask their patients about their goals in life.
There were a lot of people involved in making this happen, and Fine lists them—dozens of them—when the topic comes up. But everyone involved knows it wouldn’t have happened if not for him.
At the luncheon, Fine was there to see cancer surgeon-cum-writer Atul Gawande. In addition to having a practice based out of Dana-Farber and being on both the faculty at Harvard and the staff at the New Yorker, Gawande is the author of the bestselling book Being Mortal (and host of the Frontline documentary of the same name). It’s a look at how society, and doctors in particular, can better deal with the frailties of an aging population.
From the ballroom stage, Gawande told the audience of doctors and administrators about his daughter’s piano teacher, Peg. In 2010, Peg had a rare pelvic cancer that required chemotherapy and radical surgery. Two years after returning to her piano lessons, though, as a result of the treatments, she developed what Gawande called a leukemia-like malignancy. Then the original cancer came back, too. She was in constant pain, stuck in a hospital bed, and none of the treatments were working. Knowing the condition was incurable by established medicine, Peg and her husband didn’t know what to do.
Gawande told the crowd that healthcare professionals should be equipped to discuss what comes next, suggesting the conversation should mostly consist of four questions: what is the patient’s understanding of his or her condition? What are the patient’s goals if health wor-
sens? What are the patient’s fears? And what trade-offs are the patient willing and not willing to make? He also pointed out that the answers to these questions change in time, so it’s a discussion worth repeating.
In the end, Peg’s doctors were able to get her on a pain medication regimen that allowed her to go home and start teaching piano again. She was able to teach for four more weeks, and then her students held a big recital in her living room before she died. She was able to take each student aside, to give each one a gift and some final words.
“Medicine has forgotten how vital these things are to people,” he said. The chance to share memories and contribute something to the world before leaving.
As Fine sat in the audience, listening to the story of Peg, he was moved to the verge of tears. He’s had thousands of patients at this point, but he still feels an emotional connection with every case, every story he hears. When the talk was over, though, Fine was back to smiling. It’s been such a long fight, and he’s come a long way from doing CPR on corpses, but he’s excited to see the industry change.
That’s why Susan Shor was willing to let me sit in on her family’s meetings with Fine, and why she’s OK with my writing about Frank’s death. He believed in education and he lived a public life. She hopes that by sharing her family’s story, more people will learn about palliative care.
“It’s not just about changing the way people die,” she says. “It’s about changing the way people live.”
