Engaging The Patient

Featured Guest Blogger: David Sobel, MD

David Sobel, MD

My father died from cancer.  To be more specific, he died of malignant mesothelioma.  Now, all cancers are mean and ugly, but mesothelioma is slightly unique in that it is mean and ugly and fast.  From the time of diagnosis, 95% of patients will die within one year.  My father was textbook — he died 10 months after learning of the diagnosis.

I’m slow to admit that during those ten months between diagnosis and death, my father and I never specifically talked about his disease. This is even stranger when you consider the context. My father was a vascular surgeon which is to say that he was a methodical planner and meticulous about details. I was a surgeon as well, but also the co-founder of Emmi Solutions.  Emmi, as many of you know, makes patient engagement programs, and when I founded Emmi, it was to help empower patients; to provide them with the foundation and framework to engage in meaningful conversations about their own health decisions.  So, here I was all about patient engagement and my father was all about precision and care — and, yet, we never uttered the word “mesothelioma”.  Not once.

Is there room, then, in a forum on shared decision making and patient communication for a father and son who never acknowledged their diagnosis? I hope so for a couple of reasons.

First, I don’t think we were all that unique.  I see many patients struggle verbalizing their disease as they simultaneously make very sound and reasoned medical decisions.

Secondly, although we didn’t dissect the diagnosis and prognosis, we did talk, in great detail, about his care.

Very early on it became clear that there would be no planes.  He was not jetting to MD Anderson, up to the Mayo Clinic and then doubling back to Sloan Kettering.  He would stay with his oncologist — an abruptly straightforward doctor who never had time to actually sit in a chair during an office visit (as my mother would say, this doctor’s heart was in the right place even though his ass wasn’t).  Most importantly, we talked about my father’s medical school training in Amsterdam. He carefully described the kindly and humane manner the European doctors provided what he thought was the right amount of supportive care — a drink if you’re thirsty, a blanket when you’re cold, some medicine if you’re in pain — without forcing fluids, nutrition and oxygen on the dying.

I often wonder whether he understood how dire his prognosis was. When I think about it intellectually, I believe that he must have known. After all, he was an excellent doctor.  He had reviewed his clinic notes and I caught him, at least twice, looking over my shoulder when I was reviewing his CT scans.

Yes, I am curious about what he knew, but can also live without knowing. I have no regrets that I did not challenge him with his death. There would be no catharsis in his admitting to me that he knew he was dying. My job was to listen well and to gently steer the conversation so we both had a clear understanding of his desire. My job was to let him finish his own sentences; to be his son and not his doctor.

I am happy to say that when the time came and the doctors began discussing IV fluids and g-tubes to provide my father with nutrition, my mother quietly refused. She gave him a drink when he was thirsty and a blanket when his was cold.   I am very proud of my mother and my father died well because of her.

My father died of malignant mesothelioma 5 years ago. I think of him daily and often when I’m working in the operating room because it is a common history that we shared.

I finished a surgical case the other day and the patient, a young man in his late 20’s, woke up from anesthesia in a frantic state. His arms were flailing and fists were clenched. It was as if he was transported into the middle of a rumble. As we were restraining the patient’s arms to keep him from harming himself, my friend Paul, the anesthesiologist, commented that patients wake up from anesthesia the same way they went to sleep. If they go to sleep calm, they wake up calm. Go to sleep frightened, wake up frightened.

All doctors at some point become patients. I will someday have my own diagnosis, prognosis and treatment plan. My hope is that I go to sleep knowledgeable, engaged and calm — and wake up the same way.

About the Author:

David Sobel, MD is co-founder of Emmi Solutions.  He completed his urologic training from Rush University Medical Center in Chicago in 2005 and joined Urology Associates, P.C. in February 2009.  He earned his medical degree from the University of Illinois at Chicago Medical School.  He is board certified by the American Board of Urology in adult and pediatric urology and is a member of the American Urological Society and the Sexual Medicine Society of North America.  Prior to his medical career, Dr. Sobel spent several years as a corporate attorney at the law firm of Paul, Weiss, Rifkind, Wharton & Garrison.  He earned his J.D> from the University of Michigan Law School and completed his undergraduate studies at the University of Michigan, concentrating in religion.  David is interested in all ares of urology, including urologic oncology, treatment of benign prostatic hypertrophy, stone disease and incontinence.  He also has a particular interest and expertise in men’s sexual health.