1. Bolwell, Brian J. MD, FACP

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I recently attended a leadership retreat about health care moving towards a value-based reimbursement structure. It was a half-day session, at an off-site location, with about 150 people attending. It's a frequent topic in my role and one with which I have become familiar; how cancer centers come to grips with the issue of value-based health care will define many of them going forward.

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But in the middle of this long retreat, swiftly changing focus, a case story was presented. It was about a very complex clinical situation that required many people from different disciplines to generate a good clinical outcome. It was riveting, and the story lifted the entire session, reminding us exactly why we do what we do in a stark, real, and personalized way.


Telling Patients' Stories

I like patient stories. A few years ago, I met a consultant who was an expert in social dynamics and culture. He said that one of his consulting jobs had been to elevate the culture of a medical school. The dean believed that the students did not really understand the essence of clinical medicine, and that engagement was lacking. The consultant suggested the faculty tell stories about patients. The patient could be somebody they admired, or somebody who touched them in some way. But the idea was to discuss the human and interpersonal aspects of clinical care. He said the effort was successful (the dean believed the medical school culture did improve significantly), and he suggested I give it a try in our cancer center.


So I have. Every month, I circulate a patient story in a newsletter to all employees in our cancer center. Initially, these were written by our faculty. Now I circulate a story from one of our medical journals. We track how many people open the articles that we circulate. The good news is that the patient stories are widely read. Unfortunately, I have no way to measure the impact of these patient stories and if they elevate our culture, but I would like to believe they do.


One of my favorite stories in 2017 is by Katherine Reeder-Hayes entitled Haunted (J Clin Oncol 2017;35:113-114). It is about our favorite patients who have passed away. It's a brilliant essay that discusses how these patients become our ghosts. We remember them, what room they usually occupied, their humor, their idiosyncrasies, and their spirit. We always give 100 percent of our efforts to each of our patients, but there are some with whom we make a connection that sticks, even after they have died.


I have such ghosts. I think we all do. Previously I wondered had I done something different, perhaps the outcome might have changed, but nowadays I am simply grateful for the privilege of having relationships with such terrific people. One of my favorite ghosts is/was a young woman who had a horribly challenging lymphoma. I spent a lot of time with her and her mother. Through it all, she exhibited good humor and massive courage-a woman whose specialness defies description. A few months ago, on the first day we opened our new cancer center facility, I wore the tie that she gave me 16 years ago. Nobody knew what that tie meant, but I did, and she did, too. She regularly visits me. There are many more ghosts that show up with some frequency, each with their own story and significance to me. It's usually nice to feel them, but there is sadness as well. I miss her, and I miss many of my ghosts.


Processing Patient Outcomes

There is a fair amount of literature about physician burnout. But it seems to me that much of it concerns issues such as the hassle of the electronic medical record. I think those of us who chose oncology did so with open eyes. We knew that a lot of our patients would die of cancer. And we are ok with that. We can help them throughout their journey. We see many people who are at their best when things are at their worst. We are also in a field that is highly intellectual with a rapidly expanding knowledge base-no other field of medicine is exploding with new discoveries and new treatments to the extent cancer medicine is. The ability to offer new therapies based on immunology or genomics is energizing. But year after year of getting calls in the middle of the day that one of our patients has died-with other patients waiting, or other issues that need to be addressed, and no time to adequately process the news-takes its toll. And I wonder if that toll is cumulative.


I used to see a very large number of patients. I ran our Bone Marrow Transplant program when we had few transplant physicians and we were growing rapidly. Today, I see a much smaller number of patients. Maybe that's why my ghosts seem to be showing up more frequently-I am not in the clinical trenches as much. Maybe it's because patients touch me in a different way, given my current position. I receive constant requests from people asking for access to our cancer center or asking for knowledge about their disease. The cumulative weight of the cries for help continues outside of clinic. I do not physically meet with these patients, but somehow I can perceive their aura.


For whatever reason, these days I spend a fair amount of time wondering this: How do we process the gravity of what we do? Developing relationships is essential for good clinical care. These relationships are personal. I think that the relationships are more intense, at least with some patients, when the inevitable outcome is known. After a patient death, the relationship does not immediately die. Sometimes it withers. Sometimes, the relationship evolves into a different form. When that happens, when I have a new ghost-it's a good thing. My ghosts are my friends, and it's nice to feel them, albeit often in a melancholy way. But it is also a solitary experience. My ghosts are not shared. My ghosts are mine.


This issue of how to process our patients who leave us is a challenge; it's hard to share our experience with others. Other areas of medicine do not truly understand, other than to question our sanity for becoming an oncologist in the first place. Hospital leadership asks about our RVUs-a crude metric of physician productivity-in the cancer center. I can't stand RVUs. To think the time that we take discussing the gravity of illness with a cancer patient and their family equates with physician time in other medical disciplines is folly. People outside of medicine don't really get it either. Why should they? They are living their lives to the best of their ability, and it doesn't make sense for them to take the time to dwell on the enormity of taking care of people with cancer.


So how do we deal with our ghosts, which grow in number by the year? Sadly, I don't have the answer. I think discussing it with our colleagues helps and I encourage all of us to do so more often than we do. We have a book club in our cancer center about humanities in medicine that could help, too. I would like to think that circulating patient stories might allow our caregivers a brief respite to pause and reflect. Celebrating our clinical accomplishments helps as well, knowing that we deliver oncology care at a very high level at all stages of the cancer journey.


And maybe writing about our ghosts helps. Today my office is a bit crowded because lots of them are visiting.


BRIAN J. BOLWELL, MD, FACP, is Chairman of the Taussig Cancer Institute and Professor of Medicine at the Cleveland Clinic Lerner School of Medicine. Cleveland Clinic is a top 10 cancer hospital according to U.S. News & World Report.


Straight Talk: Today's Cancer Centers

Brian J. Bolwell, MD... - Click to enlarge in new windowBrian J. Bolwell, MD, FACP. Brian J. Bolwell, MD, FACP