Seeing the Whole Person

A recent medical encounter sharpened my awareness of how siloed the medical profession has become and how rare it is to have a "provider" (I hate that euphemism) who can see us as a whole person.

Case in point...

I have been experiencing significant pain in my left heel and ankle for over a year. I initially went to a podiatrist, who suggested some different shoes and arch supports (done) and a few stretching exercises (also done). They were helpful, but not enough. I explained the dilemma to my PCP, who asked if I'd like to see an orthopedist who specializes in heels and ankles. I was so excited to know that there was someone with such a speciality nearby, and went to my first appointment with eager anticipation of getting some relief.  I stopped in Radiology for some X-rays beforehand and was well prepared with my questions and concerns.

The appointment started off on the wrong foot (ahem) -- he was a full hour late seeing me, and no acknowledgement, explanation, or apology was offered. But he said with some glee that after looking at the X-rays, he knew exactly what was wrong: chronic Insertional Achilles tendinopathy.  He proposed surgery that would require going in, cutting the tendon, cleaning out the associated calcification in the heel, and then (hopefully) reattaching everything. It would allow no weight-bearing whatsoever on that foot for 6 weeks, followed by reduced activity and lengthy PT. Full recovery (which occurs for 75-80% of patients) would require a year. (Didn't seem like great odds to me.) Pain, stress, and life disruption were implied but glossed over.

But I hadn't gone there to discuss such a surgery. I asked his opinion about the special shoes and insoles I had started wearing (I don't deal with shoes, he said), and about the exercises I've been doing with my personal trainer (not his department), about a mesh brace I was using on my heel (no opinion), and about my observation that my left leg seems to be longer than my right leg following my hip replacements (that's moot). In other words, he wasn't interested in engaging any of the questions I raised.

The surgery thing was such a surprise, that I felt myself dissociating a bit in the moment, and so I asked if I could record the conversation so that I could recount it accurately to my family (nope, not allowed) -- or at least if he could write up his visit notes in detail that was understandable by laypersons such as me and my family. At that request, he had the audacity to say, "My notes are not written for patients."

By the end of the visit, I was furious and reeling from everything that had been thrown at me. In the ensuing 24 hours, I experienced several cycles of anger, sadness, and despair. He was supposed to be the expert on heel and ankle issues, but he only had one tool in his toolbox - a scalpel.

But now, I have come out fighting. In self-defence, I googled "nonsurgical approaches to managing insertional Achilles tendinopathy," which popped up an open-access systematic review in the Journal of Orthopaedic Surgery and Research (2021). So I have new avenues to pursue, and I have already started to pursue them. I will never darken his door again. I left a review online with one star and a lengthy explanation.

But there's a larger point to be made here - and it's about the siloing of American medicine.

3 siloes on a farm

Each specialist can only see through one narrow lens. Are they the cardiologist … or the neurologist … or the orthopedist … or the psychiatrist … or the endocrinologist? And now, within each specialty, there are often multiple subspecialities. Who can take a broader view of me as a whole person? Anyone looking carefully at my situation would conclude that surgery is contraindicated because of the lengthy recovery and the fact that I live alone with no family nearby.  But at the age of 75, I am also asking myself whether I want to invest a year of pain and recovery with the *hope* of improvement, when there might be nonsurgical approaches that would allow me to keep living my life, even if I had to pursue other treatments at the same time, and yes, put up with some "discomfort." (I hate that euphemism, too.)

I want doctors and other health care professionals who can look beyond the specific presenting problem and consider the context in which it developed and will need to be treated. Susan had many different doctors (specialists and generalists) during her last 8 years. Some only sought to understand her presenting problem in the most literal and narrow way possible. Undoubtedly, that's one way they cope with the relentless pressure of insurance-driven policies about limited-time office visits.  A precious few of her doctors were able to see her as a whole person, with a  unique constellation of values, wishes, goals, and fears, and as someone with a rich history and a family.  They have my thanks.

I recently re-read a brilliant book by Atul Gawande, Professor of Health Policy and Management at the Harvard T.H. Chan School of Public Health and a surgeon based at Brigham and Women's Hospital in Boston. In Being Mortal: Medicine and What Matters in the End, Gawande argues that medicine, as it is currently practiced in the US, is poorly prepared to meet the needs of elders and patients nearing the end of their lives -- because it doesn't focus on what matters most TO THEM.  He lays out his ideas in a compelling way, through stories about patients carefully chosen to help readers see them as whole people in need of much more than just a fix for a discrete complaint.

The book's pithy chapter titles provide clear signposts for the journey he takes us on:  The Independent Self; Things Fall Apart (essential reading, but not for the faint of heart); Dependence; Assistance; A Better Life; Letting Go; Hard Conversations; and Courage.  I highly recommend it to you, and I have already told a number of my doctor-friends about it. I will likely write more about it here in the future, but I would also be happy to have a more extended discussion about it in the chat, if you feel so moved.

Here is a link to a fascinating interview that Judy Woodruff conducted with him at the 2018 Aspen Ideas Festival (58 minutes). He directly addresses the brokenness of the medical system, but also shows how he and others are starting to think big. (It also shows that he has a nice sense of humor.)

https://www.aspenideas.org/sessions/a-conversation-with-surgeon-author-and-researcher-atul-gawande

Continued thanks for joining me on this journey. I'll be interested to hear your thoughts on these matters.