by Pippa Abston MD, PhD, FAAP

Recently, Paul Krugman took on the use of the word “consumer” as applied to patients, in his blog post “Patients are not consumers” http://www.nytimes.com/2011/04/22/opinion/22krugman.html?_r=1.  You should read it, and then come back here.

First, let me tell you that I agree with almost everything Mr. Krugman says.  It is indeed a travesty to treat medical care as a commodity.  I’ve written about that before.  As a member of Physicians for a National Health Program, I am working to bring about national health insurance, with lifelong medical care for all of us — everybody in, nobody out.  But I’d like to address a particular question Mr. Krugman posed, one he may have intended rhetorically: “How did it become normal, or for that matter even acceptable, to refer to medical patients as ‘consumers’?”

Because he never mentioned the original history of this usage, I’m going to guess Mr. Krugman doesn’t realize where it started.  I only found out a few years ago, when I became a member of NAMI, the National Alliance on Mental Illness.  NAMI is an advocacy organization started by family members of persons with serious mental illnesses (SMI)– diseases like schizophrenia and bipolar.  In NAMI, I learned that “consumer” was a label patients chose for themselves back in the 1980′s.  Initially, it was part of the anti-psychiatry movement–some people even called themselves “survivors” of the psychiatric system.  Later, the term evolved into common usage among people who did seek traditional psychiatric care.

So why did they pick that word?  If you do not suffer from mental illness or have a family member who does (I don’t mean mild depression– I mean the illnesses people get committed to institutions with), perhaps you haven’t experienced the loss of dignity so commonplace for those with SMI.  In many ways, it is better today, partly through the efforts of NAMI– but some aspects remain the same.  Can you imagine being stripped of your belongings, forced to take medications with miserable side effects, and deprived of most freedoms the rest of us enjoy?  And having this treatment called medical care?  It is true that because severely psychotic people often don’t recognize their own illnesses, treating them without their consent may be the only way to save their lives.   The psychiatrists who deliver the unwanted but desperately needed care are often quite compassionate and empathetic.  None of which removes the degradation and humiliation entirely.  Or the anger.

Angry patients called themselves consumers for a very specific reason– to remind healthcare professionals who paid them.  It was a way of taking back a measure of autonomy and personhood, in the midst of a patronizing system.  Now, 30 years after the consumer movement began, organized groups of persons with SMI still proudly call themselves consumers, as they work to erase the misconceptions and stigma of their diseases.  When I posted a comment to this effect on Facebook, one person in the mental health field responded that she calls her patients “clients.”  Here’s my first question, and this one is definitely rhetorical– since when do we have the right to choose labels for other people?

Yes, the term consumer is distasteful in my mouth.  I hate the idea of my patients seeing me as some sort of saleswoman.  But  other than in my personal role as an occasional patient, I have no standing to criticize any word chosen by others to describe themselves.  I would be especially unwilling to attack usage by persons with mental illness.

Now for my real questions.   Has the word consumer simply been hijacked by insurers, grossly insensitive to the consumer movement history?  Or have patients themselves– those without mental illness–begun to see themselves as consumers too?   Will some begin to call themselves “survivors”, not of their illnesses but of our medical system? Perhaps physicians, by putting their bank accounts before the needs of their patients and failing to defend them against corporate insurer greed, have helped injure the very meaning of our profession.  Last year in a debate with two conservative doctors, I was aghast when one stood up and said “I am a businessman”, followed by loud applause from an audience of community leaders.  My response that I saw myself as a professional drew little interest.

Before we try to reverse the renaming of our patients, we need to listen.  In medical parlance, we need to take a real history.  If the people we care for in our offices believe they are consumers, our healthcare system doesn’t just need therapy.  It needs a heart transplant.

Re-posted with permission from Pippa Abston’s Blog.