Medicine Policy Reading Systems

The Word is Not the Thing, And…

This past week I finished reading McCloud’s Understanding Comics: The Invisible Art.[1. I purchased Understanding Comics to learn a different perspective about storytelling. I am not a routine reader of comics. Regardless, I do recommend this book. It is a thoughtful and fun read, and it’s a comic book.] The second chapter, “The Vocabulary of Comics”, reiterates a major point in Hayakawa’s Language in Thought and Action:

The first of the principles governing symbols is this: The symbol is NOT the thing symbolized; the word is NOT the thing; the map is NOT the territory it stands for.

McCloud uses René Magritte’s “The Treachery of Images” to welcome the reader to “the strange and wonderful world of the icon”:

I’m using the word “icon” to mean any image used to represent a person, place, thing or idea.”

This idea that “the word (or icon) is not the thing” is relevant to a recent opinion piece, “Beware the Word Police“, in the academic journal Psychiatric Services:

Frequent calls for changing diagnostic labels to decrease stigma may result in unintended consequences. Condemning incorrect language by policing word choice oversimplifies the depth of work involved to increase opportunities for people with mental illness. This Open Forum reviews three unintended consequences of using scolding language.

The author of that opinion piece, Patrick Corrigan, lists these three unintended consequences:

  1. the word police’s focus on “just changing terms” misrepresents the depth and persistence of bias and bigotry
  2. word police are a major barrier to the essential goals of stigma change
  3. word police may undermine stigma change at the policy level

I’m One of Those People who avoids using the words “addict”, “schizophrenic”, or “diabetic”. I instead say “individual with a substance use disorder”, “person with a diagnosis of schizophrenia”, or “someone with diabetes”.

While I agree with all the authors above—words and icons aren’t the thing, they only represent the thing; the use of different words does not equate to actual reduction in discriminatory behaviors—I also believe that, as a society, The Royal We have come to agree that certain words have certain meanings.

For example, if I describe a person as a “diabetic”, what comes to mind? Perhaps you think of a family member who has diabetes and has excellent management of her blood sugars. Maybe you think of the person who goes to the emergency department multiple times a month due to high blood sugars and non-healing wounds. Or maybe you’re thinking about the growing number of people who struggle to pay for insulin to treat their diabetes. The range of ideas that come to mind with the word “diabetic” is broad.

But if I say someone is an “addict”, what comes to mind? Maybe you think of a senior vice president of a major business who wears tailored suits, but most people don’t. When I teach and ask audiences—comprised of health care professionals or otherwise—to list what comes to mind when I say “addict”, the list always includes things like

  • dirty
  • mean
  • desperate
  • selfish
  • etc.

(When the audience is comprised of health care professionals, I remind them that, right now, they are likely working with someone with a substance use disorder… and that person won’t disclose how much s/he is suffering because they feel shame about the presumed characteristics of “addicts”.)

It is true that the word “addict” is NOT the person with a substance use disorder. However, we, as a society, have somehow arrived at the agreement that the word “addict” describes someone who is dirty, has no self-control, etc.

Even though a different word doesn’t change the actual thing, the different word can change the idea about the thing. A different word can have a different definition, different associations.

Again, if I describe someone as “schizophrenic”, what characteristics comes to mind?

But what if that person with schizophrenia is your neighbor? works as a barber? works at Microsoft? is raising two kids? just earned her graduate degree? volunteers at the animal shelter? is the owner of that plot in the community garden that is overflowing with flowers and vegetables?

If different words can change the idea about the thing, then different words can help people change their behaviors about the thing.[2. To be clear, insight does not always result in behavior change. Even if the psychoanalysts argue otherwise.] In regards to the “word police” piece above, shifts in ideas and behaviors can drive improvements in health and social policy. This can lead to a reduction in stigma. The Royal We can develop new agreements for these different words. And using different words is sometimes easier than changing definitions for the same word (e.g., consider racial slurs).

Maybe I am falling into the “word police” camp. However, I do agree that behavior change is the ultimate goal, since what we do matters more than what we say. As with many things, the solution is somewhere in-between: Let’s work on word choice to help shift ideas and behaviors, but also remind ourselves that the word is not the thing.


Interesting Reads.

Here are some things I’ve read recently that you may also find interesting:

1. When Going to Jail Means Giving Up The Meds That Saved Your Life. “Pesce worried that while he went through withdrawal from methadone in jail, someone would offer him drugs, and he wouldn’t be able to refuse. He turned to the courts for a solution: Pesce sued the Essex County sheriff on the grounds that his addiction was a disability and that denying him treatment was a violation of the Americans with Disabilities Act, as well as cruel and unusual punishment.”

2. Though I do not follow sports, I enjoy sports writing. Here is a pair of articles related to baseball and economics: Why Isn’t Anyone Bidding for Bryce Harper and Manny Machado? (“… and now owners are squeezing players on either end like so many papayas in a juicer”) and Baseball Doesn’t Need Collusion To Turn Off The Hot Stove.

3. I recently saw the play M. Butterfly (and was one of the few apparent Asians in the audience…) and wanted to learn more about the curious events that inspired this work: The True Story of M. Butterfly; The Spy Who Fell in Love With a Shadow. “… Bernard Boursicot, as he has always wanted to be, becomes a man of extraordinary distinction: the man who made love to another man for 18 years and did not know.”

4. I much prefer prose to poetry, though occasionally a poem will catch my attention. Here’s David Whyte’s Everything Is Waiting For You.

5. I only learned of Donella Meadows after her death. Here’s one of her columns where she discusses “What Makes a Great Leader?” One wonders what she would say about the current President.

6. The first book I finished reading in 2019 is Language in Thought and Action. This is one of the best books I have read in my life. Many of the ideas are familiar to me from my clinical training, but Mr. Hayakawa discusses the impacts of language and word choice from a non-clinical perspective that is more accessible. The first edition was published in 1941; it still has potent relevance today.

Consult-Liaison Education Medicine Observations Reading

Hoping for Hope for Psychosis.

The American Board of Psychiatry and Neurology (ABPN) is running a pilot project: Psychiatrists and neurologists can read a set of articles and answer mini-quizzes over the course of a year instead of taking a multiple-choice exam. If the physician answers enough questions correctly in either activity, then this supports the application for board recertification.[1. To be clear, I feel frustration with the American Board of Psychiatry and Neurology and their board recertification procedures. This “read articles and take mini-quizzes” is an encouraging improvement, but there are other aspects of board recertification that give me heartburn. This is why I am also a member of the National Board of Physicians and Surgeons.]

I am enrolled in the “read articles and take mini-quizzes” pilot. One of the mandated articles is “Improving outcomes of first-episode psychosis: an overview“. One of my professional interests is psychotic disorders (e.g., conditions wherein people report hearing voices and beliefs that do not appear rooted in reality). If you share that interest, you may find this article informative, too.

Note I said “informative”, not “encouraging”. Here are a selection of statements I found notable in the article:

Psychotic disorders such as schizophrenia are common, with 23.6 million prevalent cases worldwide in 2013. One in two people living with schizophrenia does not receive care for the condition. The recovery rates… and associated disability… following a first episode of psychosis have not improved over the past seventy years under routine clinical care. Although existing psychopharmacological treatments alone can reduce some symptoms, they have little impact on the outcome of the illness.

Oof. This is the first paragraph of the article! None of the statements surprise me, but when they are all put together like that… well, it makes me wonder: “When are we going to get better at this? When will we consistently help individuals with these conditions?”

At the moment, there are no approved [prevention interventions for individuals who are clinical high risk for psychosis] that have been shown to reliably alter the long-term course of the disorder.

Sigh. This speaks to population-level data. This means that we—the individual at high risk, the family and friends of this person, and any professionals involved at the time, if we happen to meet this person—grope around as we try to minimize the risk of illness. Maybe our efforts will work for This Person, but maybe they won’t for That Person. So we continue to work and hope.

The detrimental impact of illicit substance abuse on the long-term outcome of psychosis is well known, with a dose-dependent association.

Here in Washington State, we see a lot of people with psychotic symptoms who have used or are using methamphetamine. It ruins minds. I wish people would stop smoking/snorting/injecting it.

Marijuana is legal in this state and there is some evidence that cannabidiol (CBD), a compound found in marijuana, may reduce psychotic symptoms. Delta-9-tetrahydrocannabinol (THC), also found in marijuana, can induce psychotic symptoms. This is problematic. Companies sell CBD on the internet and I have concerns about how people will run with this preliminary data.

[There is a] lack of stringent evidence for a robust effect of antipsychotics on relapse prevention in the long term….

The article summarizes evidence that suggests that antipsychotic medications may simply delay the relapse of psychotic symptoms, rather than prevent them from reappearing.

One of my early jobs was working in a geriatric adult home. My work there taught me that people with psychotic disorders can and do get better. The burdens of antipsychotic medications—paying for medications, the actual act of swallowing the pills every day, the side effects, some mild, some intense—add up. I was fortunate to work with some people to successfully reduce the doses of their antipsychotic medications and, in some cases, stop them completely! (There were also at least one instance when tapering medications was absolutely the wrong thing to do; that person ended up in the hospital. I felt terrible.)

When I reflect on that time, there were no guidelines about this. These decisions to taper medications—always with ongoing discussion and with the individual’s consent—were just an effort to “first, do no harm”. Context matters: I used as much data—from the individual, family and caregivers, and the literature—as I could find before embarking on deprescribing. Was I naive and reckless? Maybe. Was I just lucky? Maybe? Was I doing the best that I could with the information I had? I think so.

Schizophrenia features are strong predictors of poor long-term outcomes… when communicating with patients, it may be preferable to use the broader term psychosis rather than schizophrenia….

As far as I know, schizophrenia is the only psychiatric diagnosis that includes the criterion “Level of functioning… is markedly below the level achieved prior to the onset“. Even the neurocognitive disorders (dementias) don’t explicitly comment on a decline of “level of functioning”.

One wonders if the long-term outcomes in schizophrenia might be even just a little bit better if those of us who give the diagnosis of schizophrenia believed that people with this condition could get better. Do we, as a group, give this diagnosis out of resignation? And what message does that send to individuals experiencing these symptoms?

And what about that recommendation that we don’t discuss “schizophrenia” with individuals with psychotic symptoms? Indeed, for individuals presenting with “first episode psychosis”, this counsel is prudent. People with psychosis do get better. But, again, do we avoid using the term “schizophrenia” because of the connotations associated with that word? “… we don’t think you will ever get better.”

Maybe this is a circular argument: The reason why a decline in function is part of the definition of schizophrenia is because there is a decline in function in people diagnosed with schizophrenia.

But what about the people who meet all criteria for schizophrenia who get better?

The people who discern the pathophysiology of schizophrenia shall win the Noble Prize, for they will have figured out how the brain works. And perhaps, by that time, the articles about psychosis will give us all hope.