The sometimes frightening focus of specialists

This morning I read part one of Rick Hess’ blog post on experts. I reacted pretty much like, “okay, yeah, I get that.”

This afternoon I lived it.

My wife started physical therapy today. We are nine full months and three surgeries into this adventure. Today’s appointment was after weeks of pushing for it and demonstrating over and again that she needed more support than she was getting. The news was not particularly good in that the physical therapist recognized that the orthopedic therapy clinic was not fully equipped for a case like hers and so she was going to work to get her therapy at another facility. (At this point we are really trying to avoid moving my wife into a rehab facility. We recognize that might be necessary though.) It is a challenge for medical providers to work with such a complex case as my wife’s: fallen arches, severely arthritic knee, damaged hip, and a genetic connective tissue disease. And chronic pain. Severe chronic pain. There have been far too many tears and cries of pain in the last few weeks.

After physical therapy we dashed 20+ miles across town to meet with a surgeon on a non-orthopedic issue at a different hospital.

After negotiating the narrow maze of hallways, after the hard-to-open doors, and then squeezing into a small exam room, but only after the nurse pushed the exam table against the wall, I was struck again by just how ill-prepared most medical office buildings are for wheelchair access. We really are talking about the very bare minimum of accessibility standards being met.

Anyhow, we met with the surgeon, reminded him why we were there (at the recommendation of a colleague of his) to revisit and reverse a procedure from several years ago. The discussion was fairly brief. He agreed with the recommendation of his colleague. He then turned  to describing the surgery and risks. As he began to talk about scheduling, I interrupted.

“Excuse me. Wouldn’t it be better if we waited until she can walk again?”

“Why do you think so?”

“Well, I recognize that this is laparoscopic and outpatient, but she has rather significant problems now with mobility. They may yet have to repeat the foot reconstruction a third time, and she is already in far worse shape now than at this point after the first surgery. Also, if, as you say, your fallback is to do a fully open abdominal surgery in case something goes wrong, don’t we want her in better shape than she is now? Especially if this does not need to be done right away?”

“You’re right, absolutely. There’s no rush. It’s good he came with you. I’ll get you my scheduler’s card, and you can set up when you’re ready.”

Specialists. So focused on what they do, on what we hope they do best, that it seems sometime they forget the rest of the patient. In the last year, this is not the first time I have noticed this focus on specialty. Nor do I expect it to be the last. However, I do think it is evidence of a greater need for multidisciplinary care. While some would suggest that this is the proper role of primary care physician, but I disagree as it appears to that  primary care is just another limited specialty. Limited primarily because of the lack of quality time available to spend with each patient.

As George Hamilton said in Doc Hollywood, “Medicine is a volume business.”

We need doctors whose specialty is to support patients that are receiving care from multiple specialists at the same time. This is not to say there aren’t docs who do a good job with “whole patient care” now. There are. One of those was my brain surgeon. He was really good about understanding what I needed, what I might need, and why my own research about my very unusual case was necessary and helpful. Some cases are like mine. They are unique. They are atypical. And the patient and/or their advocate is likely the most capable about knowing what is going on. Good doctors recognize that.

My wife’s case is like that. We know that she is Case 0 if a specific genetic connective tissue disorder. Our son is Case 1. Similar to a well-known connective tissue disorder, but not exactly the same. Different. And some of the characteristics are radically different.

Which means that patient advocacy is important and that it is almost always good idea to have an advocate with you. Someone to ask the questions you forget, and to hear the things you don’t.

Of course, all this applies in higher education and elsewhere. I have some expertise in higher ed data and data policy from years of experience. I try very hard to be aware of the blinders I wear. I can’t pretend they are not there as they are a result of expertise and an inherent need to feel competent and thus define problems in a way I can best address them. (This is something I learned in the public policy program at Saint Lous U, so I doubt that it is unique to me.) I try also to be well-read enough to be at least comfortably aware of the very many things of which I am ignorant. It is all too easy to get wrapped up in yourself and assume your expertise carries across other things.

Save me from the sin of expertise.

 

One thought on “The sometimes frightening focus of specialists

  1. Pingback: A Festivus miracle, and associated grievances to be aired | random data from a tumored head

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