Long journey home: A family’s experience with hospice care

Hope without a cure
There is nothing about Dr. Jim Avery that tips you off about his profession. He is tanned and talkative, exuding the high-energy confidence of a college football coach or an inspirational speaker. He likes to tell stories. In his office, he told me his story, which has something in common with Paul the Apostle’s.

He was a pulmonary care specialist with a successful private practice in Clearwater, Florida. Many of his patients died of chronic, progressive lung failure. One day he was asked to become the medical director of Sun Coast Hospice, now famous for the Terri Schiavo case. He wasn’t interested, but he took the book about Cicely Saunders the recruiter offered him and read it through. He was inspired. Finally, a chance to lend a hand in shaping the future of patient-centered medical care. He took the job. Nine years later, after stints in Florida and New York City, he came to Charlottesville to run one of the country’s oldest hospice organizations, one that was founded as a result of Cicely Saunders’ 1978 lecture at the University of Virginia.

“I think just the fact that we were born out of Cicely Saunders’ vision makes us unique and distinct,” he said.

When Avery wants to make the case for hospice, though, he tells a different kind of story.

He tells the story of a home visit to a 20-year-old patient with end stage colon cancer. The young man’s father sat at the kitchen table, head in hands, weeping. Avery tried to comfort him.

“You don’t understand,” the man said. “He won’t even look at me.”

Avery went in to visit the patient, who was lying in bed in a room with his two younger brothers. It was true. The young man said he hated his father and didn’t want to see him.

“I’m leaving there and I’m going, Oh my God. To die with the silent treatment. This family is gonna blow up,” Avery said. “They’re gonna get divorced. I don’t know about the two brothers. Are they gonna be shooters? Is that what happens to kids that go through this kind of trauma?’”

Avery set up a schedule for social workers and a chaplain to work with the family. The father was able to ask for forgiveness, and his son, in the end, hugged him and forgave him. The counseling didn’t make the death more palatable, Avery said, but it might have saved the family.

Leslie Blackhall is a totally different kind of doctor. I found her in her dingy close-packed office wrapped up in a car coat because the heater was broken, talking on the phone about a patient who hadn’t responded well to a drug. She waved me to a chair as she delivered advice in a clipped, matter-of-fact voice that didn’t brook a challenge. Because of where she works, Blackhall treats time as a precious commodity.

On her walls, a depiction of the Buddha shares space with quotes from The Ramones. Her job is to apply, research, and share clinical gains in the field of palliative care, and she plies her trade on the oncology ward at the Emily Couric Cancer Center.

“How I ended up here was my dad died when I was little,” Blackhall told me. “He had leukemia. I was 8 when he died. It was like a three-year-long slow decline and in those days the thought was not to tell the children. It was like putting an elephant in a room and putting a doily on it and calling it a coffee table.”

Last month, she participated in a moderated panel discussion with the Dalai Lama. As a practicing Buddhist, it was a huge moment in her life, but one that essentially reiterated to her the notion that the way doctors deal with death has to be both medical and existential. She asked the Dalai Lama how the fact of human mortality should affect the way we practice medicine and the way we live our lives. His answer wasn’t direct. He’s not a doctor, he said, and he has no supernatural healing powers. But he practices meditation on his impermanence daily. Blackhall is still asking the question to anyone who will listen.

“How should we practice medicine given that everybody we treat is going to die?” Blackhall said. “If we see our job as keeping everyone alive, that’s a job that’s doomed to failure. Not only that, if you practice in that way, you’re practicing in a way that is not consonant with reality and you’re going to do a lot of weird things that are harmful to people and harmful to you.”

Like Avery, Blackhall used a story from her own experience to make the case for the importance of changing the way people think about palliative care.

As a young medical student, she encountered a case at NYU Hospital that still haunts her. A stage 4 cancer patient was bowel obstructed. The young woman had a tube down her nose and was literally thrashing on the bed in pain with her entire family standing around her helpless.

“We opened the door and poked our head in and looked at her and closed the door. The resident turned, said she’d be dead before tomorrow, which was true,” Blackhall said.

Blackhall couldn’t believe the group could walk away from a patient in that state, knowing her family was watching her suffer through an agonizing death.

“It was as if we had no further job with her because we couldn’t cure her. Well, she and every other human will eventually have something that you can’t cure,” she said. “If you see your job as curing everyone, then you want to walk out of that room. But if you see in your job that dying is part of living, then treatment of the dying is part of normal medical care. Knowing that that’s an existential moment for everyone, one of the hardest moments of life, you could have done something amazing for that patient and that family.”

The crux of the problem, as Blackhall sees it, is that you can’t take a clear-eyed view of the medical and economic issues involved in end of life care if you don’t deal with the reality of death first.

“The problem for doctors is that they’re trying to deal in a reality where there’s a lot of guilt set up. Are you going to prolong your life or have a better quality of life? These are false dichotomies,” Blackhall said. “Instead what’s needed is an entire reframing in the general public, in medical school, and in the way we pay for health care that recognizes that people die of chronic progressive illnesses and we have to learn how to take care of those illnesses when they reach their terminal phases.”

Avery has a different kind of worry. Hospice started as a grassroots movement motivated by a mission to provide compassionate care. Increasingly, it’s seen as the solution to the health care sector’s economic problems.

“Right now our goal is to relieve suffering, but we happen to save money. I worry a little bit that if the government says this is a strategy to save money, then things will get tainted,” he said.

But he’s confident that, at least for his organization, the message that dying well matters is gaining traction. He finished our conversation by citing a recent study that hospice care actually increases hope in patients.

“It doesn’t increase the hope of a cure, the hope to live longer,” Avery said. “But this thing called hopes of the dying: that they can die peacefully, that they could die at home, that they could die with love, that they could die having given and received forgiveness, that they could die with their wishes honored, that they could have control over things. Those are the new hopes we are giving them.”

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