The Impact of False Diagnostic Labels

Back in April, an extraordinary article was published by Dr. Peter Parry, an Australian child psychiatrist, about his correspondence with an American adolescent who had been diagnosed with pediatric bipolar disorder (PBD) during the PBD craze in the early 2000's. I had linked to the article on Twitter, but I haven't had a chance to write about it until now.

The power of this article comes from the fact that it includes a detailed first-person account from the patient "Adam." He comes across as an extraordinarily thoughtful young man, who had a tragic but far from uncommon encounter with psychiatry. Here's what Adam had to say about being diagnosed with PBD and treated:

I was 12 when first diagnosed. I had suffered depression and anxiety including severe OCD, which has since disappeared. It should also be mentioned I come from a screwed-up family and was physically abused by a sibling. Parents divorced young. My mother had a lot of issues, etc. So it goes without saying there was a lot the psychiatrist should have asked if he was ever so inclined. But unfortunately, he holds a faculty appointment at [edited—A PBD oriented child and adolescent psychiatry clinic].

Within about three months, I was on 8 different medications at one time. Very scientific treatment—all the best—several anticonvulsants, several antipsychotics, a couple of antidepressants and lithium too.

Things got so bad, that I ended up being referred to the neurology department, for different opinions about strange symptoms I began having on this cocktail. Which resulted in their giving me a working diagnosis of some kind of mitochondrial myopathy. "Bipolar plus mitochondrial disease" as it went. Which I have been told only recently could have been precipitated by the huge amounts of divalproex I was taking. The symptoms quickly disappeared when I coincidentally stopped the drug for unrelated reasons. Oh well, but it is a clear illustration of what one of the "best" academic medical centers in the world has to offer a struggling young boy.

And here is Adam's perspective on how the diagnosis and treatment affected him:

But the worst part of this, which I have only been recently able to shake within the last year (2008/9), is the defectiveness I felt. Just kind of in some core way. Like I'm totally different. When I was younger, that feeling was a lot stronger and more prominent. Now I feel like a fool for even having given thought after eight years to the question of whether I might go to sleep one night and wake up manic. I decided with my (new) psychiatrist's support a year ago to stop my medicines. I’m not doing especially well now, but I have at least been able to shake the feelings the diagnosis itself carved into me. The same can’t be said for its physical and social effects though.

It's not just children and teenagers who are vulnerable to being misdiagnosed with bipolar disorder; it can even happen to an NBA millionaire. A couple of weeks ago, I read one of the best articles that I've ever encountered on mental health in professional sports, titled "Why Isn't Delonte West in the NBA?" As a casual basketball fan, I knew that West had been a part of the Cleveland Cavaliers during the LeBron James years. I've heard that he struggled with mental illness and had been diagnosed with bipolar disorder. I recalled that he had been arrested after being found driving around with multiple weapons, and there were even rumors that he had slept with LeBron's mother. But this article provides the inside story of what actually happened, and the facts were deeply unsettling.

Delonte West grew up without a stable home, with a single mother who worked multiple jobs just to keep afloat after his parents divorced.

West has an older brother, a younger sister, and a vast extended family that he refers to as "a village." He stayed with many of those relatives growing up. "I lived off of every exit," he says, rattling off 11 specific ones from memory. "I lived in so many apartments … with cousins, uncles, and aunts, just making it."

In the NBA, he had several outbursts of anger, which led to him seeing a psychiatrist.

West was diagnosed as bipolar by a D.C.-area specialist. He says that when he saw the doctor, he’d been feeling down, having days when he was sad and tired and didn’t want to get out of bed. But he told the specialist that there were also times when he "might just go out and buy a car. Or go to the mall and spend 25 grand." West doesn't think the doctor took into consideration that such behavior might not be unusual for a professional athlete with a big paycheck. He now thinks that he was suffering a temporary bout of depression, not exhibiting symptoms of a chronic disorder.

Another part of the article provided additional context for West's inner struggles:

As a kid, moving from school to school, he often found himself the target of playground taunting. "I was real funny-looking," he says, with big ears, a mole on the back of his head that he had removed once he got to the NBA, and a birthmark below his lip that he's also had partially removed. His light skin and red hair stuck out, too. "I was made fun of a lot growing up, but I just knew the basketball court was the place where you couldn’t make fun of me, you had to respect me." He says he always had "more jokes for me than you had," but that he internalized the cruel things kids said to him. Last year, West told an interviewer that he believed his real problem was not bipolar disorder, but "self-loathing."

This was what actually happened in the weapons incident that contributed to derailing West's NBA career:

It was the offseason, and a few of West's cousins had come over to his house with their children. West's mother was looking after the kids while he slept and the other adults went out. At some point in the evening, West's mother woke him up. She said the kids had gotten into a closet in his small, in-home music studio, where he stored guns that he had bought, legally, in Cleveland. He needed to do something about those weapons, she told him.

With the driveway crowded by his cousins' cars, West got on his motorcycle so he could bring the guns to another residence. Earlier in the evening, he'd taken Seroquel, which is often prescribed for bipolar disorder. Seroquel makes you drowsy, and as he headed out on the highway, he found that he was dozing in and out. After he felt himself drifting off, West was pulled over for making an unsafe lane change, and he told the officer that he was carrying weapons. The day after the arrest, a police spokesman said that West was "very cooperative the entire time."

After his arrest, West played for the Cavaliers for another season, but the article makes the plausible argument that because West had been labelled with a mental illness, people were willing to believe whatever crazy things they heard about him, including the false rumor that he had slept with his teammate's mother. Undoubtedly, taking Seroquel contributed to his arrest. Without the "bipolar disorder" label, if instead the narrative had been that West had emotional issues due to childhood stresses, he may well still be in the NBA.

Earlier this week, Dr. David M. Allen had a blog post on misdiagnosis: "Is Your Psychiatrist Committing Malpractice Even if Doing What a Lot of Other Psychiatrists Are Doing?" (The short answer is "yes.") However, according to Dr. Parry's article, when Adam looked into his legal options, he was told "his treatment would be deemed 'standard practice' where he lived," which is a big deterrent for the lawyers when it comes to medical malpractice lawsuits. What a sad irony: the crappier the standard diagnosis and treatment becomes, the more the practitioner is protected by the herd.

When I was in medical school at a very biological psychiatry-oriented institution, the psychiatry professors made sure to educate us on the past evils of blaming refrigerator mothers for schizophrenia. And yet, as Dr. Parry pointed out, we have gone from the "brainless psychiatry" of the psychoanalysts to today's symptom-focused "mindless psychiatry" that tends to ignore the patient's inner life and the developmental biopsychosocial context. Here is my favorite section of Dr. Parry's article:

In addition to being a method of inquiry, science is a social process and there is a vast research literature concerning the sociology of science. Scientific disciplines do not build on knowledge in a purely linear fashion, but at times undergo dramatic upheavals according to paradigm shifts. The dominant paradigm governs what is acceptable to study, research, publish and practice. Softer sciences like psychiatry can be more susceptible to extreme paradigm shifts. The history of psychiatry reflects this. 

One of my biggest frustrations while reading Dr. Parry's words is that his wisdom is relegated to an opinion article published in a little known open-access journal, while the leading child psychiatry journal, which claims to be "advancing the science of pediatric mental health and promoting the care of youth and their families" [emphasis mine] would never permit such a sharp critique within its pages.

Psychiatry's Low-Tech Advantage

The other day, I received this in the mail:

It's a 57-page booklet/brochure ("bookchure"?) filled with professional photos designed to tug at the heartstrings, minimalist typography, and colorful charts highlighting the awesomeness of Akron Children's Hospital. All I could think of was, "How much money did they waste on this?" Living nowhere near Ohio, I will never have the chance to refer a patient to them. Pages 51-53 list 6 names on their Board of Directors, 26 Directors, 3 Directors Emeritus, and 5 Honorary Directors. This many Directors, I presume, are needed to oversee the 4751 employees and 703 medical staff (p. 50), as well as $1.06 billion in gross patient services revenue (p. 56).

And this wasn't the first such bookchure I've received. I've gotten similar mailings from the Mayo Clinic, the Cleveland Clinic, and probably other places that I've since forgotten. This is what our health care industry has become: Specialty centers who vie for clientele by boasting about the high-tech procedures and treatments that they offer. It reflects a system where about 20% of the population take up 80% of the costs (and even more damning, 5% of people account for 49% of spending).

At its core, Psychiatry is a very low-tech specialty, perhaps the one least reliant upon machines and specialized equipment. That's not to say there's no technology in the field, since knowledge constructs such as CBT are also forms of technology (and let's not forget Big Pharma), but psychiatry today is generally not what anyone would call "high-tech."

The leaders of academic psychiatry and the director of NIMH certainly view the low-tech nature of psychiatry as a huge disadvantage, a travesty that they are doing everything in their power to try to rectify. Hence the ever-greater emphasis on higher-tech ways of studying and manipulating the brain, whether it's optogenetics or connectomes.

However, I view psychiatry's low-tech nature as a huge advantage, at least when that advantage is embraced. A psychiatrist can easily start a practice due to low capital costs and enjoy low overhead since there is no need for a huge support staff. This keeps the focus on the relationship between the doctor and the patient, rather than having some other intermediary like an insurance company or a managed care organization extracting profit. Patients get to spend more time with their psychiatrist, and the psychiatrist has to see fewer patients, resulting in a win-win scenario. Especially if you believe, as I do, that a good therapeutic relationship can lead to positive changes.

Rather than embrace these advantages, the leaders of our profession have done all they can to minimize them, by advancing and supporting a biomedical model of psychiatry where psychiatrists are turned into prescribers doing brief med checks (or into consultants to other doctors). Since drugs are one of the few high-tech (and expensive) things in psychiatry, this of course serves the interests of pharmaceutical companies and the researchers that they support.

Last week, 1 Boring Old Man wrote about new APA President Paul Summergrad's plea for psychiatrists "to put aside internecine battles":

What [Summergrad's] predecessors have failed to notice is that a growing number of psychiatrists refuse to operate in the world created for them by Managed Care and insurance reimbursement, and that’s not all about money. […] A lot of it has to do with being unwilling to have practice dictated by excel spreadsheets in the offices of bureaucrats, the marketing departments of a corrupt industry, or the moguls of the APA and NIMH. Many avoid the APA like a plague. And many who still work in that system would be glad for a chance to change it into something more compatible with the real reasons they chose this specialty in the first place.

I really like the above paragraph from 1BOM since it captures the essence of the problems within our profession, but I would say that it's very hard to be a part of "that system" without being subject to general economic trends affecting all of healthcare. Most other specialities are not quite as low-tech as psychiatry, but the ones that rely on talking to patients and examining them using very basic equipment, such as internal medicine and pediatrics, certainly have similar dynamics.

With all that said, I am by no means anti-technology, as long as the technology is serving the patient. For example, a recent San Francisco Chronicle article highlights one entrepreneur's efforts to create "a website for a health care model in which members pay monthly fees for primary care." If that works, it would help remove primary care physicians from the grind of being in the current insurance reimbursement-based system, which has led to high rates of burnout. Also promising are the health initiatives of companies like Apple, which have the potential to empower individuals to keep better track of their own health (and allow doctors easier access to that information), which hopefully will someday decrease society's reliance on the high-tech specialty hospitals with their fancy publicity materials.