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| Amy Shissler My Cerebellar Stroke Recovery |
This is the letter that Julia’s husband wrote that will be sent to the CEO, the Chairman of the Board of Trustees, and the Dean/Vice President for medical Affairs at RIC and it’s affiliated medical school at Northwestern.
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I am writing to you as a clinical physician, a physician-administrator, and most importantly as the husband of a patient. This letter is a formal complaint against one of your physicians, Richard Harvey, MD, who behaved in a manner that was harmful to a patient, my wife Julia, and to your reputation as the leading rehabilitation hospital in the United States. His recommendations over the phone were superficial, uncaring, based on incomplete information, were psychologically damaging, and not at all what is expected of a medical director of Stroke Rehabilitation at a major center. Whether intended or not, the effect of his words were to tell my wife, “You will not get better, we can’t help you, find a way to enjoy what you still have in life, which I am sure is wonderful”.
Eighteen months ago my wife Julia had a right basal ganglia hemorrhagic stroke due to a cavernous malformation, leaving her with significant left hemiparesis and sensory deficit, but intact cognitive and language abilities. She has made improvement in her walking ability, not using either a leg brace or a wheelchair as of six months post-stroke, and is no longer using a cane at home. She cares for herself alone at home while I am at work. Unfortunately, her arm recovery has lagged her leg, so she is still unable to work or take care of our home, which she loved doing. For this reason we were considering coming to Chicago from New York City, where we live, for an evaluation and initial therapy to see if an intensive full-day outpatient course of therapy at RIC might be beneficial. Toward that end we called Dr. Harvey last week.
I understand, as should Dr. Harvey, that by its nature, a phone consultation is a challenge, preliminary by definition. When I called him I briefly outlined Julia’s history, similar to that stated above. I then brought Julia onto the phone for a three-way conversation. What most upset both Julia and me were two issues: 1) once Dr. Harvey became aware that Julia had seen Joel Stein, MD, a stroke physiatrist and chairman at Columbia Presbyterian New York, he took a step back, deferring to a close colleague’s assessment as reported by us without even speaking with that colleague himself, saying that he and RIC would have nothing more to offer than Dr. Stein and his institution, and 2) a clear underlying message that Julia has essentially no chance of regaining hand function, neither wrist nor finger extension, so she should stop spending most of her day doing rehabilitation at home, and essentially, “get a life”. His presumptuous and culturally insensitive words were, “You have a great life”, just learn to accept your (fixed) limitations. Julia could see where he was headed, and attempted to stop him, saying, “Please don’t go there”, but he plowed straight ahead anyway, saying what he apparently thinks he needs to say to all or most patients regardless of their values.
My Harvard-educated physician and award-winning graphic designer wife did not get where she is in life by being complacent and compliant. She works harder than anybody I know and is uncompromising in her standards. She wants to get everything or almost everything back in terms of left arm and leg function, and has worked and will continue to work ceaselessly at it. I thought that’s what the rehabilitation field’s ethos was – to understand each individual patient’s values and goals, and to work creatively and tirelessly to help her achieve them. And that’s why we called what we thought was the No.1 rehabilitation center. Instead, Dr. Harvey’s words were tone-deaf and harmful. He spoke insensitively to someone teetering on the edge of despair, and pushed her right over the cliff. And I have had to spend the last week helping her crawl back to solid ground.
I was taught that the physician’s art and skill lie in asking the right questions, but Dr. Harvey didn’t even ask us any follow-up questions about Julia’s hand function, which is actually not as black-and-white as he assumed. A physician must also have both the humility and the patience to reach his own conclusions, not blindly accepting others’ assessments, as Dr. Harvey did as soon as he heard our report of his friend Dr. Stein’s assessment, which was from well over half a year ago. He also seemed to adhere to the overly simplistic and reductionist formulation of 3 month/6 month/12 month benchmarks for stroke recovery and prognosis. Finally, it seemed that his interest in Julia ended when it was clear that she didn’t fit into his research protocols for transcranial stimulation.
In summary, we found Dr. Harvey’s approach to Julia’s request for help to be lacking the professionalism, compassion, and respect that should be standard at an institution of RIC’s caliber. Was that too much to ask of Dr. Harvey or RIC?
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