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.

Book Review: Slow Getting Up

Over the weekend, I read Nate Jackson's Slow Getting Up: A Story of NFL Survival from the Bottom of the Pile in almost one sitting, a rare thing these days with my attention span getting ever shorter. Jackson was an unlikely success story, someone who beat the odds by making it to the NFL and playing for six seasons despite not being drafted after playing for a Division III college.

Jackson very vividly captures the bravado of the professional athlete: the pride in his extraordinary physical prowess, the adrenaline rush of stepping onto the field, the agony of being in the purgatory of NFL Europe, the fear of appearing weak, the drunken cash-burning Vegas partying, the frenzied testosterone-fueled cracking of helmets.

The book is wickedly funny in parts, such as when Jackson described having to be at practice early because he was part of the special teams unit:

Forty-five minutes later the rest of the team shows up. Starters don't come to special teams meetings. They're happy not to play during the ritual sacrifice of kickoffs and punts, but maybe they're also a bit envious. We're a tight-knit group. We know things the other guys don't. We know about fifty-yard dead-spring head-on collisions. We know about snot bubbles. We look at the game differently. [p. 101]

The gallows humor pervades much of the book, but the most jarring passages are when Jackson quotes from his own extensive medical record. The dry technical language belies the horrible ravaging that his body has suffered. From one of his later injuries:

MRI findings:

High-grade complete tear and stripping of proximal left adductor longus and brevis, with distal retraction and about 5cm tear defect gap with intervening edema and hemorrhage. Strain of the adjacent pectineus and obturator externus and gracilis muscles and attachments.

Moderate proximal hamstring tendinosis and/or strain and scarring are seen, with longitudinal thinning and possible tearing of the proximal deep margins at the ischial tuberosity attachments bilaterally. [p. 185]

From my viewpoint, Jackson's interactions with the team doctors take on a surreal quality. They ostensibly warn him of the risks and benefits of procedures such as steroid or NSAID injections, but it's a foregone conclusion that he would do whatever might get him back onto the field the fastest. Of course, the doctors were serving the team more than the players: one passage describes how Jackson's injuries were first reported to the team's management and the coach before he himself found out what was going on. The long-term health of the player did not factor much into the equation.

Ultimately, what I got out of the book is that the NFL is a profit-generating industry, which like all others, seeks to maximize its profits. It treats the players as replaceable cogs in a machine, parts that can easily be replaced when broken. Sure, coaches and general managers are frequently hired and fired as well, but it is the bodies and minds of the players that pay the ultimate price for our entertainment. Yet at the same time, players enter into this arrangement willingly (at least in the beginning), attracted by the money, the glory, the desire to be compete with the best in the world.

And that brings me to perhaps why I wrote this post today. There was an article in The Daily Beast making the rounds: How Being a Doctor Became the Most Miserable Profession. The article highlights a litany of woes, including the high suicide rate amongst doctors, the fact that 9 out of 10 doctors would discourage others from joining the profession, and how doctors have to see so many patients now that "the average face-to-face clinic visit lasts about 12 minutes."

Just as the NFL uses its players for profit maximization with little regard for their well-being, the healthcare system uses doctors in the same way. I tend to believe that what keeps most doctors in the profession is not the quest for money or status, but a sense of duty, of wanting to help patients and not abandon them. So in this way, doctors might actually be worse off than NFL players. There's no collective bargaining agreement. Doctors – in the U.S., at least – don't go on strike. The associations that are supposed to represent doctors often seem to collude with the business forces of medicine rather than look out for the interests of practicing clinicians. Doctors are not so easily replaced, and since there's already a big doctor shortage in the U.S., we've been sucking up physicians from the rest of the world's supply.

Compared to primary care, psychiatrists have it relatively good. Many are still in solo private practices, not on insurance panels and seeing a manageable number of patients per day. Others work in public-sector roles. Yet with every passing year, the system creeps closer to requiring psychiatrists to participate, ostensibly to help contain costs with measures like integrated care. What can be done to change it for the better? The current path is clearly not sustainable. Cost containment is clearly being targeted at the wrong level. How about containing costs here, or here? Now that would be a great start!

Brooklyn Castle Movie Review

I recently had the pleasure of watching Brooklyn Castle, one of the most delightful and moving documentaries that I have ever seen. It follows a group of students on the chess team of Intermediate School (I.S.) 318 in Brooklyn, which is perennially one of the best in the country, even though I.S. 318 is a public school where over 60% of families in the district are living below the poverty line. The New York Times review introduces us to the documentary's young subjects:

Rochelle Ballantyne dreams of being the first female African-American chess master; Alexis Paredes hopes to be a lawyer or doctor so he can ease the burdens of his immigrant parents. The dreadlocked newcomer, Justus Williams, might be a chess genius; Patrick Johnston, who has attention issues, just wants to raise his ranking. Pobo Efekoro helps his mother with her day care business.

Dovetailing with my last post, this film illustrates the importance of having caring adults involved in the lives of children and adolescents. Other reviews have highlighted the important roles that chess teacher Elizabeth Vicary and assistant principle John Galvin play in their students' lives, as well as how budget cuts threaten important programs like I.S. 318's chess team. Here, I would like to highlight another aspect of Brooklyn Castle that was striking to me, and that is the interaction between these students and their parents.

As a child psychiatry trainee, I attended multiple lectures on the importance of authoritative parenting, which refers to parents who have a warm relationship with their children but also set reasonable limits; who have high expectations and try to provide their children with the tools to succeed. The parts of this film that show the students interacting with their parents, while brief, are wonderful illustrations of the authoritative approach.

On more than one occasion, the film shows families sitting at a meal together having a conversation, which by itself is an important protective factor. Rochelle's mother repeatedly emphasizes the importance of her having an education. Alexis's mother reassures him that he does not have to find a job after high school, that he can go to college because that is why she and his father work so hard. She cries tears of joy when she finds out that Alexis had been accepted to a good high school. Pobo, who lost his father at a young age, shoulders his responsibilities at home without complaint. Patrick's mother acknowledges how hard things must be for him and participates in a fund drive to raise money for the chess team.

My favorite moment came when Justus lost a match and called his mother on the phone. He says hesitantly, "I lost a pawn, and then I just…fell apart after." She clearly hears how upset he is, and she validates what he is feeling, saying, "You're upset, right?" When he answers in the affirmative, she reassures him and encourages him to persevere: "Yeah, I can tell. That's ok. Just pick yourself up, it happened." She then says, "Boy, I feel down too I'm not gonna lie." She says this in such a way that is not blaming him for making her feel bad, but to share with him that she understands what he is feeling. This conversation, which lasts less than 30 seconds, can be used in a instructional video to show parents how they should approach their children who are upset.

As a whole, Brooklyn Castle is uplifting and joyous, but also a reminder of the dedication and effort that it takes to help children succeed. Just one last random nugget that I loved: where else are you going to see a kid rap about conquering his opponents in a chess match?

On Bullying and NFL Culture

I have always been enthralled by NFL football. Growing up, I was amazed by the super-human strength, speed, and dexterity exhibited by its players, and how they seemed to (almost) always get up from bone-crunching hits and keep playing. Over the past decade though, it has become increasingly clear just what a physical and mental toll the game takes on its players, with the NFL's earlier attempts to deny links between concussions and lasting brain damage in the form of chronic traumatic encephalopathy at the forefront of recent reports.

For some observers, the NFL has definitely lost some of its luster. However, the league's popularity does not seem to be waning. The week-to-week dramas on and off the field have me convinced that the NFL is America's #1 reality show. What I wonder is whether this scrutiny can result in anything positive? Or will the NFL just take advantage of the increased attention, whether good or bad, for gain and profit? I think how the league handles the latest scandal will be instructive.

For the past week, there have been numerous news stories about Jonathan Martin of the Miami Dolphins, who left the team and checked into a hospital for emotional distress following alleged bullying by teammates. Martin, who graduated from Stanford, has made public some disturbing voicemails and text messages from Richie Incognito, a player who was kicked off two different college football teams.

What I haven't heard discussed much on sports shows is what exactly is bullying? The officially accepted definition is that bullying is unwanted, aggressive behavior that involves a real or perceived power imbalance, which is repeated over time. From this definition, it's quite clear that bullying was in fact what was going on. Incognito, an NFL veteran and a member of the team's player leadership council, is clearly in a position of power over the much younger Martin, and the abuse certainly was not a one-time incident, starting with Martin's rookie year and continuing into this season.

Watching the Fox NFL pregame show this morning, I was dismayed but not surprised by some of what I heard. Jimmy Johnson talked about how Martin was not drafted until the second round, meaning some teams must have thought there were some issues with him. Michael Strahan said that people only do to you what you allow them to, implying that Martin is somehow weak for not standing up for himself. Terry Bradshaw talked about how our culture has become too quick to judge. And then there was Jay Glazer's exclusive interview of Incognito, who admitted to sending insensitive messages, but denied being a bully or racist (link to ESPN's summary of the interview):

"When words are put in a context, I understand why a lot of eyebrows get raised," Incognito told Fox Sports during the interview, which aired Sunday. "But people don't know how Jon and I communicate to one another. For instance, a week before this went down, Jonathan Martin texted me on my phone, 'I will murder your whole F'ing family.'

"Now, do I think Jonathan Martin was going to murder my family? Not one bit. He texted me that. I didn't think he was going to kill my family. I knew that was coming from a brother. I knew it was coming from a friend. I knew it was coming from a teammate."
[…]
"You can ask anybody in the Miami Dolphins' locker room who had Jon Martin's back the absolute most, and they will undoubtedly tell you [it was me]," Incognito said. "Jon never showed signs that football was getting to him [or] the locker room was getting to him."
[…]
"All this stuff coming out, it speaks to the culture of our locker room, our closeness, our brotherhood," Incognito said. "And the racism, the bad words, that's what I regret most. But that's a product of the environment."

Now imagine a high school girl accused of bullying saying the same thing: "But I was her best friend! She said mean things to me, too! In the high school environment, that's just how we talk!" Not much of a defense, is it? Incognito is certainly right that the culture of the team played a role; he just clearly does not think that there's anything wrong with the culture. What the ESPN story does not include though, is the most important fact to come out of that interview: The one question that Incognito would not answer is whether his coaches had directed him to toughen Martin up.

The wisest thing any player has said about the situation has come from Brandon Marshall, a wide receiver who has experienced plenty of his own troubles, but who seems to have turned his life around after being treated for borderline personality disorder and courageously discussing his diagnosis in public.

"Look at it from this standpoint," Marshall said. "Take a little boy and a little girl. A little boy falls down and the first thing we say as parents is 'Get up, shake it off. You’ll be OK. Don't cry.' A little girl falls down, what do we say? 'It’s going to be OK.' We validate their feelings. So right there from that moment, we're teaching our men to mask their feelings, to not show their emotions. And it’s that times 100 with football players. You can't show that you're hurt, can't show any pain. So for a guy to come into the locker room and he shows a little vulnerability, that's a problem.

"That’s what I mean by the culture of the NFL. And that's what we have to change. So what's going on in Miami goes on in every locker room. But it’s time for us to start talking. Maybe have some group sessions where guys sit down and maybe talk about what's going on off the field or what's going on in the building and not mask everything. Because the (longer) it goes untreated, the worse it gets."

A T-group for NFL players, what an inspired idea! Marshall also addresses the role the head coach plays in shaping a team's culture:

“We [the Chicago Bears] look at rookies different,” he said. “You have to earn your stripes, earn your place on the team, earn your place in the NFL. But as far as crossing that line? Disrespecting guys? Demeaning guys? That just doesn’t happen here. Actually, Coach (Marc) Trestman did a great job of really going out of his way to make everyone feel comfortable from Day One.”

Will the NFL take advantage of this opportunity to change how coaches manage locker room behavior? Or will there be another flimsy attempt at a cover-up?