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A Conversation With A Cancer Patient About Palliative Care

Norbert von der Groeben

The doctor and patient sat in comfortable leather armchairs, facing each other onstage in the School of Medicine’s Berg Hall. Timothy Quill, MD, a palliative care specialist, leaned forward, hands clasped on his knees, head tilted to one side. For about an hour, he asked short, pointed questions of Paul Kalanithi, MD, a 37-year-old Stanford neurosurgeon with advanced-stage lung cancer, encouraging him to talk about his illness.

But mostly, Quill did what he trains other physicians to do. He listened.

“Are there things in particular that you worry about now?” said Quill, professor of psychiatry and medical humanities at the University of Rochester School of Medicine. He is an expert on end-of-life decision-making and how to preserve quality of care for seriously ill patients.

Kalanithi — a husband, new father and writer who recently completed Stanford’s neurosurgery residency program — paused for several seconds before responding.

“Not really,” he said. “I am sad at not seeing my daughter grow up, at probably not being here long enough for her to have a memory of me.

“I try to worry about things that are actually changeable. I worry about getting my book finished. I’d like to have that done for my daughter to know me.”

The 24th annual Jonathan J. King Lecture, held Oct. 21 at the Li Ka Shing Center for Learning and Knowledge, was different than what’s been presented as part of the lecture series in previous years. The series is presented by the Stanford Center for Biomedical Ethics.

Quill, the presenter, had asked Kalanithi to join him onstage to give a presentation on how ongoing doctor-patient conversations can help improve quality of care for seriously ill patients — a major goal of the branch of medicine called palliative care. Kalanithi agreed. He was diagnosed with the cancer last year, and has gone from a physician delivering bad news to patient living with it.

Taking on the roles

“We thought we’d have a conversation to see how we might do it,” explained Quill, who has written several books on end-of-life care and how doctors should address the emotional ramifications of illness, as well as the medical treatment plan, with their patients. For an hour, he played the role of Kalanithi’s physician. And Kalanithi played the role of patient.

“How are you now?” Quill asked, to open the conversation.

“I’ll give you the medical history in five sentences, if I can,” Kalanithi said. “I was diagnosed in May 2013, my sixth year of residency. At the time, I was having a lot of back pain, night sweats, fever. I was diagnosed with lung cancer. I responded well to Tarceva [a chemotherapy drug] for about a year.

“Then I had a relapse — last spring, a course of chemotherapy, which was extremely difficult with a number of complications. I was able to finish residency. Right now, I’m still kind of recovering from that cycle of chemotherapy.

“My last hospital visit was around July 1 or 2. My first child was born July 4.”

At this the audience applauded. Kalanithi introduced his wife, and pointed to her in the audience.

“Do you remember when you first got the news of your diagnosis?” Quill said.

“Yeah, I was able to look at the CT scan. It was very dramatic. My lungs were filled with nodules. … Seeing that confirmed my suspicions. Seeing how widespread it was, I figured my life expectancy couldn’t be more than a few months.”

Confronting the challenges

Throughout the presentation, the audience, which filled the auditorium and included an overflow of young physicians and medical students in scrubs seated on the carpet, sat in rapt attention. The crowd listened to Kalanithi tell the story of his diagnosis and how his life changed after that day in May of 2013.

“My first thought was my wife should remarry as soon as possible, and we should redo the mortgage on the house,” he said. He said he assumed there was “no way” he’d be returning to his residency. The next day, he met with his Stanford oncologist, Heather Wakelee, MD, who he complimented as being “superb” at supporting him both medically and emotionally throughout the next year and a half.

“She said, ‘Because you’re a surgeon, we want to protect the nerves in your hands in case you want to go back to work,’” he said. “The day before I had thought I was dead. Now, I thought, here’s this crazy lady discussing going back to work.”

But Kalanithi did go back to work, completing his residency while at the same time focusing, together with his wife, on getting their finances in order. He also made a conscious decision to kick-start a career in writing, 20 years earlier than he had originally planned. He wrote an opinion piece, which was published Jan. 24 in The New York Times, titled, “How Long Have I Got Left?” And now he’s working on a book proposal.

What surprised him most about his life after being diagnosed with lung cancer was just how hard it was dealing with existential types of questions, about what he valued most in life, he told Quill.

“Having to deal with questions like, ‘What am I going to do with my life?’ was exceedingly difficult. After realizing I wasn’t going to die in weeks or months, figuring out what I was going to do with that time was a struggle.”

Quill nodded. Then he asked the patient to continue with the rest of his story.

Grieving period

“You went through what sounds like a grieving period, then threw yourself back into your life. What do you remember about getting hit [with bad news] a second time?” Quill said.

“Seeing a big tumor when there wasn’t one on the prior scan was sort of expected at some point,” Kalanithi said. “Well, [I thought,] it’s now. The idea that my life span was still going to be curtailed was always present in my mind. The hardest part is still thinking about how my wife and parents and siblings will react. I will have the easy part. I’ll just be dead.”

“Is a cure still on your radar screen?” Quill said.

“A cure was never really on my radar screen. There’s a 1 percent complete remission rate. It’s really now about the length of life left, the quality of life. How many good years do I get to have?” Kalanithi said.

“Do you ask ‘Why me?’”

“Not really. I know bad stuff happens, and it seems to happen more or less randomly. I don’t bother too much with, Why me? Why not me? The statistic is something like 0.0122 percent of 36-year-old nonsmokers will get metastatic lung cancer. Our careers are built on treating people who have had similarly bad luck.”

The next step in his treatment plan is his first visit with a palliative care expert next week, Kalanithi told Quill. Until now, he said, he had only had the kind of discussion he was having onstage with Quill with his oncologist because he was still highly functional. He’s entered a new stage in his care, he said.

During the presentation, Kalanithi spoke to the physicians in the audience, urging them to prepare patients as much as possible for the “experiential landscape” of living with a serious illness. As patient, he found solace in poetry, in his writing, in his family and friends. Talk to your patients, he said. Listen to them.

Responding to a final question from a medical student in the audience who asked for advice on how to train to be effective at palliative care, he said, “Focus on your patients. On who they are, what they care about. It’s really why you went into medicine.”

The audience broke its silence and rose in a standing ovation.

This story was originally published by the Stanford University School of Medicine on Oct. 22, 2014.