Recovery Expectations: How Did I Get It So Wrong?
Physician-patient discussions can be fraught with misunderstanding, even when using everyday language.
A few months ago, two fellow patient advocates told me about their experiences with breast MRI. They discussed the procedure with the referring physician, read online descriptions, and thought they knew what to expect. They were not prepared for lying face down with their face and breasts in cut outs on a table inside a tube for 45 minutes. One of them mentioned to me she would have taken a tranquilizer and had someone drive her if she had known. Many physicians may never have had this type of test, and, especially if male, may not realize the level of discomfort for the patient.
I recently had hip replacement surgery. As an empowered and activated patient I did a lot of reading on the procedure and recovery, including doing a full medical journal literature survey using the skills I acquired in my MPH program. I talked with many who had had the same procedure, I interviewed three orthopedic surgeons, and read a book written by my chosen surgeon's partner for patients on what to expect from hip replacement surgery.
Based on all of my research I developed a list of goals for my recovery. I wrote these down and shared them with my surgeon before my surgery and asked him if they were reasonable. He confirmed they were reasonable. The goals included not using narcotic pain killers after leaving the hospital, as well as other time goals for walking a mile continuously, walking unlimited amounts, starting cardio exercises, and traveling to conferences.
The damage to my hip was more extensive than anticipated and thus the surgery more extensive as well. After the surgery, my surgeon reviewed my goals again and said most were still reasonable, but I would probably not be able to walk a mile continuously by my desired date.
My first hint that I was on a different wave length came at my two-week post-op visit. I mentioned I had pain in my right buttock that made it difficult to sit down. I keep track of my steps and miles walked on my Apple Watch and iPhone and shared the data with my surgeon. He commented that I was walking too much. I should not be walking three miles a day. I mentioned that I was following his directions; every two hours spend 1.5 hours in bed, 15 minutes walking and 15 minutes sitting. I told him I set a timer and walked for 15 minutes. It seems I was not supposed to do race-track circuits, walking as fast as possible through my house for my walks. They were supposed to be slow paced with lots of pauses.
At my three-month post-op visit, I asked my surgeon if the continued stiffness in my operated on hip was normal. He commented that yes and that even with uncomplicated hip replacements it was a year before patients are fully recovered.
This surprised me as my expectations were that three weeks after a normal hip replacement I would be able to start cardio exercises; after six weeks my hip restrictions would be lifted and I would be back to most of my normal activities; and after four to six months I would be fully recovered. I know I had more extensive surgery and a slow recovery fraught with issues, but I thought I had gotten the baseline normal case expectations right.
My surgeon is very patient friendly. He answered all of my questions. I did months of research on the procedure. How did I get it so wrong?
My physical therapist provided the clue. When I was lamenting my confusion he said "Andrea, when you say unlimited walking, you mean a 10-mile hike, the surgeon means walking around the house and doing your grocery shopping." It was an "aha" moment for me; our experiences shape the context for the meaning of words. My surgeon does a lot of hip replacements in older patients who are not very mobile. In that context "unlimited walking" has a different meaning than my context of coming to surgery with a 35-year habit of working out two hours a day, which I maintained with great difficulty until the day of surgery.
Looking back at my discussions about breast MRI experiences and my recent surgery, it seems to me the need for clear communication goes beyond just using plain language. It means patients need to consider the experiential context of the physician recommendation, and physicians need to consider the individual context perceived by the patient. Both physicians and patients should check for shared understanding with non-ambiguous language and specific examples. This is especially important in the high anxiety situations that occur in most radiology imaging and interventions.
As I get ready for round two of hip-replacement surgery — fix (revision) to my right hip and full replacement of my left hip — I will be more explicit about my goals and make sure my surgeon and I have a shared understanding of expectations.
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Does Direct Radiologist-Patient Verbal Communication Affect Follow-Up Compliance of Probably Benign Assessments?