Why do we take our meds? How do doctors help or hinder this decision?
(Column: Ask the Doctor)
We Docs Have A Lot To Learn
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One of the things Ken and I talked about a lot was the difference between what folks tell their physicians and what they actually do. It is surprising, but also somehow seems universal. As some of you know, I too have a chronic illness. I am keenly aware of how often I, even as a fellow physician, alter and "soften" what I tell my own doctor about my symptoms, compliance with his medication regimen, and overall well-being. Let's face it. Sitting facing your doc, it's embarrassing to tell him or her that you can't even remember, or don't really want, to take all the pills prescribed the way you're expected to.

About a year or so ago, I had the privilege of sitting in on an Awakenings Group at Ken's apartment. During and after that meeting, I got a chance to talk with some of you about this very issue. I was delighted at how open folks were with me in sharing the huge gulf that exists between what we docs think is going on and what people actually feel and what they do.

One of my professional activities is being a member of the committee on Psychiatry and the Community of an organization called the Group for the Advancement of Psychiatry. My committee has, over the years, focused on consumer-centered activities. Recently, we asked "Dear Abbey" to run a column asking for people who were diagnosed with schizophrenia to write to us about their experiences with their psychiatrists.

What an eye-opener that was!!! Their insight, and anger, but also their hopefulness and spiritual aliveness impressed us all. From these letters, we compiled a booklet of responses, which Abbey, an honorary committee member, will soon make available to her readers. If any of you would like a copy of Now That We Are Listening, as we titled the booklet, just write to me care of NYC Voices and I'll have one sent to you as soon as it is finished being printed.

Our current committee project is to develop a teaching tool to help those who educate young physicians and other mental health professionals. The focus of our work will be to help clinicians understand the issues surrounding consumers' adherence to, and non-compliance with, medication regimens. So far, committee members have come up with dozens of vignettes from their own clinical experience, stories which we hope will serve as examples of why people do, and don't take their medicines. At our meeting last week, as we sat around the table, we realized that something critical was missing! We were, essentially, a bunch of doctors writing about our experiences. We recognized that we desperately needed input from individuals who sit on the "other side of the desk."

This month, I'd like to ask YOU to provide me/us with material. I hope that you will be willing to write up brief vignettes of your interactions with your doctors, from your own experiences. What I'm hoping for are examples of ways you have been treated, or questions you have, or haven't been asked, which had an impact on your taking medications the way they were prescribed. Be honest.

Tell me about times when your doc acted like a total jerk, or times when you lied, or misrepresented what you were doing. Tell me about side effects you were never asked about, or results you never reported to your physician. Tell me about how being rushed and feeling like you didn't have time changed your behavior, or how a gesture, or behavior or question by your doc helped you decide to take a medication. It's time your voice was listened to!

We docs have a lot to learn about what we do that helps, or doesn't. Ken's challenge to me was to make our work together more of collaboration, and in his memory, I hope to include as many of your thoughts and experiences as possible in my life, my work, and the committee's report. Please help me carry this out.
Please send your brief experience stories regarding doctors & meds to Steve Goldfinger, M.D., c/o New York City Voices, P.O. Box 2618 Grand Central Station, New York, NY 10163.
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