Orlando, FL—It is quite likely that you have heard of or even read the bestselling book, When Breath Becomes Air, which was the focus of the keynote address at the 2017 National Comprehensive Cancer Network (NCCN) annual conference.
Written by Paul Kalanithi, MD, the book chronicles the challenges Paul faced during his battle with stage IV lung cancer. He died at age 37 years. At the time of his diagnosis, Paul was Chief Resident of Neurosurgery at Stanford University School of Medicine.
A roundtable discussion at the recent NCCN conference focused on the lessons providers and caregivers can learn from Dr Kalanithi’s experience, as discussed in his book.
His treating physician, Heather Wakelee, MD, Associate Professor of Medicine, Stanford Cancer Institute, who was referred to as “Emma” in the book, as well as his wife, Lucy Kalanithi, MD, Clinical Assistant Professor of Medicine, Stanford University School of Medicine, CA, shared some of their insights.
“What he captures in the book is the essence of what I think a lot of us in oncology try to help our patients capture, which is this idea that even though he was dying from the time I first met him, he really lived for the time that he had with his disease….He left a gift with the book…being able to have a way for us to communicate with our patients,” said Dr Wakelee.
“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,” she said.
Seeing the Patient as a Person
Dr Wakelee discussed the value that Paul placed on treating his patients as individuals, and being able to connect with them on that level. “In healthcare we get to meet a huge diversity of patients,” she 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,” she added.
Treating a physician who transitioned to a patient had its own set of challenges, she said. “With Paul, I knew he would understand where I was coming from,” said Dr Wakelee. “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. I knew he was going to be able to reflect on the facts and understand it and understand that there are unknowns,” she added.
Paul went through his own difficulties in navigating the transition to a patient, said his wife, Lucy.
“The metaphor of the shifting landscape or sandstorm that wipes all your assumptions away is very apt,” said Lucy, who spoke at a public event for the first time since the death of her husband in March 2015.
“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,” Lucy added.
Although Paul asked how much time he had left after his diagnosis, Dr Wakelee noted that providing patients with a definitive diagnosis in the face of so much uncertainty is another disservice, because patients often become fixated on the amount of time they are told they have left. “The focus needs to be on all the rest of it,” said Dr Wakelee.
Paul struggled with the constant reshaping of his identity with his cancer diagnosis and later with progression of his disease, especially with the birth of his daughter.
“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,” said Lucy. “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,” Lucy added.
Caregivers, Family Members
“One thing I do is acknowledge the caregiver and family members,” said Lucy. “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.” She said that this experience changed her approach to her patients’ family members.
Dr Wakelee recognizes that the patient’s family needs to be involved in the caring process.
“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,” Dr Wakelee emphasized.
“The family doesn’t always come in, and I don’t get to know them. That can be a disservice,” said Dr Wakelee.