Sunday, March 12, 2017

Health System Ethics and my Left Foot

I haven't written a post for more than 6 weeks. My left foot/ankle/lower leg are a big part of the reason for the lapse. So I decided to write about my experience and connect it to the topic of this blog -  health system ethics.

Many physicians have written about their own experiences of illness. Here's my  story.

In the fall of 2015 my left big toe itched. I didn't pay much attention until it began to hurt and develop redness. My primary care physician (PCP) was on a medical leave for a serious medical problem, so I saw another physician in his practice group. By that time I had red blotches on my foot as well. The physician had two hypotheses:

   (1) It might be an early stage of "vasculitis" (inflammation of the blood vessels). She did some blood tests, all of which were normal, and referred me to a rheumatologist (a specialist in autoimmune and musculoskeletal conditions).
   (2) It might be a circulatory problem, and she referred me to a vascular surgeon.

The  rheumatologist did a thorough evaluation with many blood tests. Except for two minor abnormalities, all were normal. He concluded that I did not have a systemic illness.

The vascular surgeon also did a thorough evaluation and a CT scan to visualize blood flow to my legs and feet, which showed adequate circulation with no visible blockage.
Lesson # 1: The specialists were excellent, but when they didn't find a problem within their purview, I was left with a "what now?" question. Given the absence of my long term PCP I decided to be my own case manager. I believed more than ever in the importance of primary care as the key hub of the health care system.
The pain was better during the summer. Perhaps the warmer weather explained it. Whatever the explanation, I enjoyed the summer.

In the fall of 2016 the areas of red discoloration spread onto my left ankle and lower leg. Happily, my PCP returned to practice from his long term medical leave.
Lesson # 2: Apart from all of the valuable things PCPs do, at least for me, and I would guess for many others as well, there is a powerful placebo effect from having a solid relationship with a clinician one trusts for skill, knowledge, and a genuinely caring attitude.
On examining me and hearing my history, my PCP said - "This is really weird. I have no idea what's going on. I think we should involve a dermatologist." A couple of weeks later I saw a dermatologist who suggested a few possibilities and did a biopsy. The biopsy came back "non-specific" - i.e., it didn't tell us anything. She thought we should get a second opinion.

It took several weeks for this to be arranged. The very knowledgeable consultant I saw put forward some additional possibilities and recommended repeat biopsies. These showed (a) tiny clots in the small blood vessels and (b) no signs of an inflammatory/autoimmune process.

This told us what was happening, but not why it was happening.
Lesson # 3: Humility is a virtue. My PCP acknowledged having no idea of what was going on, but did have an idea of what to do next. The first dermatologist suggested getting a further consult within her own specialty. Their non-arrogance paid off!
On the basis of seeing blood vessel clots, the second dermatologist suggested that I  see a hematologist, who put together (a) the presence of clots and (b) the fact that in the previous month I had a mild elevation of my platelets (blood cells involved with clotting) that was (c) a bit higher on repeat measure. Before our appointment she had me do further blood tests. We'd been colleagues in the past and she sent me the following email:

"I had you do some special blood tests beforehand and, indeed, you have a JAK2 mutation which is present in people with Polycythemia Vera and Essential Thrombocythemia.  This likely explains your elevated platelet count. I will be suggesting starting Hydroxyurea pills – very easy and well tolerated, to bring down the platelets and hopefully prevent more problems in the future."
Lesson # 4: In the previous 14 months I'd seen 10 different physicians. Without good coordination, this would be a surefire recipe for chaos. When  my PCP returned he carried out the coordination function very well, but throughout the 14 months the secure email system my practice group uses was invaluable. I could write to one physician and copy the note to others. This aspect of the electronic infrastructure really paid off.
I've started the new medication (Hydroxyurea), but I'm very aware that we're still proceeding on the basis of hypotheses. Blaming the elevated platelets is a plausible explanation, but two elements don't fit. A year ago, after the problem was clearly underway, a blood test showed normal platelets. The hematologist speculated that "perhaps your platelets are more 'sticky' and clot more easily." That could be true, but it's a speculation. And if the platelets are the villains of the situation, why are the symptoms limited to my left foot/ankle/lower leg?
Lesson # 5:  In 1865, the French physiologist Claude Bernard, who, among other discoveries formulated the concept of homeostasis, wrote “physicians make therapeutic experiments daily on their patients . . . . [M]edicine by its nature is an experimental science, but it must apply the experimental method systematically.” When faced with illness and suffering, patients and physicians want certainty. But as Bernard recognized 150 years ago, certainty of the kind we can have in mathematics is not to be had in medicine. Patients, physicians, and the public, need to learn how to work with and live with the absence of bedrock certainty.
 In this post I haven't touched on the powerful psychological impact of chronic pain and disability. I'll do that in future posts. If you've read this far - thank you for your attention!

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