Patient, Provider, Caregiver: Physicians Share Lessons Learned When the Tables Are Turned

Article ID: 672002

Released: 29-Mar-2017 9:00 AM EDT

Source Newsroom: National Comprehensive Cancer Network® (NCCN®)

  • Credit: JAR Studio

    From left to right: Heather Wakelee, MD; Lisa Kalanithi, MD; Robert Carlson, MD

  • Credit: JAR Studio

    Dr. Kalanithi and Dr. Carlson speak at the NCCN Keynote.

Newswise — [FORT WASHINGTON, PA – March 29, 2017] — What happens when a young physician at the precipice of a stellar career is diagnosed with cancer and faces the same uncertainty about end-of-life as have his patients?

The late neurosurgeon Paul Kalanithi, MD, offered eloquent insight into the heartbreaking challenges he faced, in his New York Times bestselling memoir, When Breath Becomes Air. Kalanithi died in March 2015 at age 37 following a diagnosis of Stage IV lung cancer.

In the first time addressing a public forum together, Kalanithi’s widow, Lucy Kalanithi, MD, Clinical Assistant Professor of Medicine at Stanford School of Medicine; and Paul’s treating oncologist, Heather Wakelee, MD, Associate Professor of Medicine at Stanford Cancer Institute, spoke about their experiences on March 24, 2017 during the National Comprehensive Cancer Network® (NCCN®) 22nd Annual Conference: Improving the Quality, Effectiveness, and Efficiency of Cancer Care™.

More than 1,600 attendees convened at the Rosen Shingle Creek in Orlando, FL, to hear about the latest updates in the NCCN Clinical Practice Guidelines in Oncology (NCCN Guidelines®), as well as issues in supportive care and patient management.

Before the audience of fellow physicians as well as nurses, pharmacists, and other oncology stakeholders and industry leaders, the two recalled the moments that most influenced their lives and the way they practice medicine.

“Paul faced his cancer in a very, very brave manner,” said Wakelee, who had worked with Paul Kalanithi at Stanford but didn’t get to know him until he was her patient. “What he captures in the book is the essence of what we try to do to help our patients with cancer. Even though he was dying since the time I met him, he really lived.”

“He was a master of putting into words the ambiguity inherent in medicine,” said Robert W. Carlson, MD, CEO of NCCN, who served as moderator of the panel. Dr. Carlson noted that Dr. Paul Kalanithi grieved the loss of his neurosurgical career even as he understood how all–consuming a medical career could be. His father, also a physician, was often an absent parent during Paul’s youth; and Paul’s medical training had put a strain on his marriage.

Dr. Lucy Kalanithi recounted that a reviewer wrote that Paul had put his life on hold during his neurosurgical residency, and just as he was about to learn how to live, he had to learn how to die. “But he didn’t put his life on hold -- that was his life,” Lucy Kalanithi said. “That is the privilege of medicine…life and work are very intertwined. It’s part of the meaning of your life.”

Dr. Carlson asked Dr. Lucy Kalanithi whether the experience of Paul’s illness had changed the way she approaches her patients.

“One thing I do is acknowledge the caregiver and family members,” Lucy Kalanithi said. “I have a much deeper understanding of this when I go into a room…I remember Heather saying, ‘how’s the new pain medicine working out for you guys?’ It was plural, and that’s what it was like in real life.”

Dr. Wakelee also noted the importance of caring for the whole family. “When I’m working with medical students and fellows in training, we talk about the importance of continued communication not just with the patient, but with the families.”

“The family doesn’t always come in and I don’t get to know them,” Dr. Wakelee added. “That can be a disservice. An important part of our job is to help that family after the patient has passed to look back and know we did what we could to help them, and the patient was able to live with the time they had.”

Dr. Carlson asked Dr. Wakelee whether it is different to treat a fellow physician.“Having patients who have medical knowledge certainly makes our job a little bit easier. With Paul, I knew he would understand where I was coming from,” she said. She contrasted the physician’s approach to knowledge with that of other professional patients she sees.“We understand that there are things we do not know…how long someone’s going to live, whether something’s going to work or not,” said Dr. Wakelee. In Silicon Valley, we have a lot of engineers and others who look at the world from a different perspective. They are taught differently….if you think about it the right way, you’ll get to "the truth". Biology is different from engineering, she explained. “We have to take what we know and understand that no matter how hard we push the science and think about things, we will not always arrive at “the truth” ..so to have someone in medicine who understands that…I knew he was going to be able to reflect on the facts and understand it and understand that there are “unknowns",” she said.Dr. Carlson then asked Dr. Lucy Kalanithi about a passage in the book in which Paul describes his difficulty navigating his transition to a patient. “Death is a one-time event but living with a terminal illness is an evolving process,” Dr. Carlson said. “How was he able to accomplish it?”

“The metaphor of the shifting landscape or sandstorm that wipes all your assumptions away is very apt,” Dr. Lucy Kalanithi responded. The decision-making is tied up in the prognosis…we had a sense of worst case, best case, and most likely scenarios…He looked at best case, which is why he went back to neurosurgery. You have to keep adjusting that as things keep changing, but also living with the total uncertainty is incredibly hard.”

“That is one of the challenges that we as care providers have,” Dr. Wakelee added. “I have a lot of discussions around that balance. We don’t know. I could quote an average but I don’t think that’s helpful. When [Paul] was first diagnosed he wanted me to tell him how much time he had, [but] that would be me saying something I don’t know. When people come to me crestfallen because a provider told them they have one year, that’s a disservice, as well.”

When we give patients a specific number, that’s all they remember. The focus needs to be on all the rest of it.” The job of the physician is to help the patient make the most of the time they do have, and when patients can do that, it’s inspiring, Dr. Wakelee said.

“One of the reasons I went into oncology was being able to witness how many patients were able to really live…that really fascinated me.”

At the core, being a good communicator is key to getting there.

“In health care we get to meet a huge diversity of patients,” Dr. Wakelee said. “It’s our job to figure out how to communicate best with each person. Everyone is looking at the world differently and you have to understand where they’re coming from.”

Dr. Carlson noted that in Paul Kalanithi’s case, he faced an existential dilemma between thinking about the future and focusing on the urgency of the moment.

“Time stood still and sped up at the same time, especially when he was getting really sick,” Lucy Kalanithi said. “He said that time used to feel linear and now it feels like a space. There was this sense of time standing still that came out of the [realization] that the future is not guaranteed, and that's especially poignant when you have a newborn. [There was this feeling that] this is our family right now and this is all we have and how great is that. At the same time, Paul was really goal directed the whole time. As a chief resident, your identity is wrapped up in your future….when he was diagnosed he said the future he imagined had evaporated. That really messes up your identity; he kept having to reshape his identity.”

In Dr. Paul Kalanithi’s case, literature was the key to helping him regain his sense of self and make sense of his unexpected journey. After a chest x-ray showed nodules in his lungs, he headed to the hospital with books including Cancer Ward by Aleksandr Solzhenitsyn, Mere Christianity by C. S. Lewis, and Being and Time, by Martin Heidegger. “To contemplate [it], he had to put words back on it,” Dr. Lucy Kalanithi said. “That transition was so intense.”

Later, his own writing drove him.

“The act of Paul writing kept him rooted and participating in the world by producing something that would probably outlive him. The book saved him in a way,” Dr. Lucy Kalanithi said.

And Paul’s book gave Lucy the opportunity to reflect on his words with others across the country who have suffered similar losses.

“Doing a book tour for Paul was incredibly helpful,” she said. “I didn’t know if I would like it…but it’s been helpful to talk about it … grief can be incredibly isolating.”

Dr. Lucy Kalanithi expressed her delight at the opportunity to have a conversation with Dr. Wakelee in front of an audience of their peers. “I can’t believe we’re sitting here together,” she said. “I wish Paul were here to see us. It’s awesome.”

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About the National Comprehensive Cancer NetworkThe National Comprehensive Cancer Network® (NCCN®), a not-for-profit alliance of 27 of the world’s leading cancer centers devoted to patient care, research, and education, is dedicated to improving the quality, effectiveness, and efficiency of cancer care so that patients can live better lives. Through the leadership and expertise of clinical professionals at NCCN Member Institutions, NCCN develops resources that present valuable information to the numerous stakeholders in the health care delivery system. As the arbiter of high-quality cancer care, NCCN promotes the importance of continuous quality improvement and recognizes the significance of creating clinical practice guidelines appropriate for use by patients, clinicians, and other health care decision-makers.

The NCCN Member Institutions are: Fred & Pamela Buffett Cancer Center, Omaha, NE; Case Comprehensive Cancer Center/University Hospitals Seidman Cancer Center and Cleveland Clinic Taussig Cancer Institute, Cleveland, OH; City of Hope Comprehensive Cancer Center, Los Angeles, CA; Dana-Farber/Brigham and Women’s Cancer Center | Massachusetts General Hospital Cancer Center, Boston, MA; Duke Cancer Institute, Durham, NC; Fox Chase Cancer Center, Philadelphia, PA; Huntsman Cancer Institute at the University of Utah, Salt Lake City, UT; Fred Hutchinson Cancer Research Center/Seattle Cancer Care Alliance, Seattle, WA; The Sidney Kimmel Comprehensive Cancer Center at Johns Hopkins, Baltimore, MD; Robert H. Lurie Comprehensive Cancer Center of Northwestern University, Chicago, IL; Mayo Clinic Cancer Center, Phoenix/Scottsdale, AZ, Jacksonville, FL, and Rochester, MN; Memorial Sloan Kettering Cancer Center, New York, NY; Moffitt Cancer Center, Tampa, FL; The Ohio State University Comprehensive Cancer Center - James Cancer Hospital and Solove Research Institute, Columbus, OH; Roswell Park Cancer Institute, Buffalo, NY; Siteman Cancer Center at Barnes-Jewish Hospital and Washington University School of Medicine, St. Louis, MO; St. Jude Children’s Research Hospital/The University of Tennessee Health Science Center, Memphis, TN; Stanford Cancer Institute, Stanford, CA; University of Alabama at Birmingham Comprehensive Cancer Center, Birmingham, AL; UC San Diego Moores Cancer Center, La Jolla, CA; UCSF Helen Diller Family Comprehensive Cancer Center, San Francisco, CA; University of Colorado Cancer Center, Aurora, CO; University of Michigan Comprehensive Cancer Center, Ann Arbor, MI; The University of Texas MD Anderson Cancer Center, Houston, TX; University of Wisconsin Carbone Cancer Center, Madison, WI; Vanderbilt-Ingram Cancer Center, Nashville, TN; and Yale Cancer Center/Smilow Cancer Hospital, New Haven, CT.

Clinicians, visit NCCN.org. Patients and caregivers, visit NCCN.org/patients. Media, visit NCCN.org/news.


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