Many oncologists have probably been following Dr. Peter Bach’s moving and beautifully written series, recently concluded in the New York Times, about his wife Ruth's breast cancer diagnosis and treatment at Memorial Sloan-Kettering Cancer Center, where he is an attending physician. I don't know Dr. Bach personally, but I want to wish him and Ruth well and thank him for his frankness and willingness to share their journey in such a public way. No doubt many of us, who have been blessed enough not to have had to deal with a cancer diagnosis in a partner, read this series and wondered whether we would have had similar courage and openness. His recounting of many of their experiences -- her oncologist's apparent unwillingness to give them a recurrence statistic when asked, a medical resident's obliviousness to their pain when rehashing a narrative of her diagnosis, and his subtle positioning of the medical team on rounds in a patient room to enhance the patient-centeredness of the encounter -- all resonated because these are such familiar situations and conversations oncologists participate in every workday.
For me, it was impossible not to identify with the various members of the oncology care team he describes and wonder if my interactions with my patients are similarly perceived. How do my patients feel when I try to balance honest, direct information and hope, in a discussion with a woman and her spouse about adjuvant treatment for a high-risk, node-positive breast cancer? Or when I am attending on the inpatient service and lead a cast of thousands on rounds into a darkened patient room of anxious faces of family members hanging on to my every word? This NY Times series was hardly the first time in my career that I did this self-reflection and sought ways to improve my interactions with my patients, but it did prompt me to think about how central this should be for all of us.
As meaningful and insightful as I found Peter’s essays, I looked forward to reading the comments that followed each story almost as much. The majority were positive, thanking him and Ruth for sharing their story and wishing them well. Many health professionals wrote of their similar experience and how it changed their perspective. Other patients commented reassuringly about the positives in their cancer care at Memorial and elsewhere. Some were particularly perceptive or clever (“And Doc, don't sit on my bed”). But some of the comments seemed mean-spirited and harsh, such as a few who wondered if Dr. Bach and Ruth received special treatment because he was a faculty member, and others who lamented that it was unfortunate that it took him “so long” to understand the patient perspective and make changes going forward in his dealings with his own patients. (Note that he really never said this.) When I first started following his series and began reading the extensive comments after each article, I began feeling a rising level of anger and defensiveness. Didn’t the readers understand that no one forced him or Ruth to open up their lives to the public like this, or that Taxol has the same toxicity no matter who you are? Perhaps these comments were a reaction to our disjointed and impersonal health care system, or maybe they simply were people lashing out at care providers in frustration over a grim prognosis or difficult treatment side effects.
But then on further reflection, I think I get it and understand the point many of the patients who took the time to respond to Dr. Bach’s articles were trying to convey. I think what some of those comments were really saying is that, as an oncologist on the other side who, thankfully, at least so far in my life, has not had to deal with a cancer diagnosis in my immediate family, I cannot possibly really understand what it is like to find yourself in a situation fraught with such utter uncertainty and loss of control. Until you have been there, you cannot truly empathize with someone whose life has been so turned around and had their priorities so rearranged.
What is empathy, really? It is understanding and entering into another’s feelings, thoughts, and experiences so completely that it is as if they were your own. While many of us do try our best to do this with our patients every day, we probably succeed at it far less often than we give ourselves credit. I don’t think that means that I am typically insensitive or incapable of understanding the patient perspective, but I do think it means that it is one part of my professional development that I can never let go or feel that I am experienced enough as a clinician to believe that I have “arrived.” That’s another reason why the work of people like Amy Abernethy at Duke and Claire Snyder at my own institution on patient-reported outcomes is so important. Hearing the patient’s voice directly without health provider filtering is a small step toward minimizing traditional barriers to empathy. And I would have to believe that appreciating the psychosocial aspects of the patient’s cancer experience is the area that needs the most work for providers. I know that for my own practice and interactions with patients, I am probably decent at understanding physical toxicities – not that I can’t do a better job any given day. But I am sure I do far less well at understanding the true impact their cancer has on the things that I don’t see, like what happens when they go home and try to deal with the pressures of child care, trying to function at work while battling treatment-related fatigue, and agonizing over the financial impact of their cancer on their daily lives. Previous research published in the Annals of Internal Medicine
in 2010 has shown just this, that we physicians don’t do a very good job in understanding patient context. From the Annals article:
By patient context, we mean those elements of a patient's environment or behavior that are relevant to their care, including their economic situation, access to care, social support, and skills and abilities. Contextual errors represent a failure to individualize care.
This study showed that 78% of the time, physicians failed to take into account complicating contextual factors that required an alternative plan of care. Whether you call it empathy or understanding patient context, it should be front and center in every interaction with every patient. I thank Dr. Bach for reminding me how important this should be for me as an oncologist, and I join the other voices wishing Ruth much good health in the years ahead.