The head of the U’s psychiatry department is leaving his role amid a swarm of criticisms.The Minnesota DailyBy Christopher AadlandApril 13, 2015
With the controversies around the department, especially the two recent investigations, I felt it was most constructive for me to step down as the chair of the Department of Psychiatry,” Schulz said. Since he came to the University to lead the department in 1999, Schulz has spent his career working with patients, like Markingson, who have schizophrenia or borderline personality disorder. While Schulz said the department has made many accomplishments under his leadership, he said he regrets dismissing some of the concerns that surfaced after Markingson’s death. He said he wishes he would have met with Markingson’s mother, Mary Weiss, to discuss the concerns she raised during and after Markingson’s death. “You can imagine, for years now, that’s been on my mind,” Schulz said…
These proxies were a step forward in that they offered a way to attach an objective value to the symptoms of mental illness. But they also brought a bag-full of new potential errors into the mix. Because they seemed to objectify the subjective, they gave the illusion that mental illnesses were, indeed, objective in the same way physical illnesses are. That may or may not be true in any given instance, but that still needs to be proved rather than just assumed because something can be measured. So many think, or at least talk like they think, that all mental illnesses are physical – caused by some identifiable pathogen. But there are other pitfalls. A Clinician-Rated PANSS Form is obviously not on the same level as a centrifuged blood sample measuring the % of the blood volume taken up by red cells [Hematocrit]. Just look at the PANSS Forms for Dan Markingson. I don’t know who did the rating, but at a time when we know from his mother’s reports, his own personal journal, and the comments from people around him that he was still lost in a psychotic fog – those objective measures [the PANSS ratings] said he was doing fine. That was not true, and those PANSS results were anything but a psychic hematocrit. The rating scales were never intended to be used for diagnosis. They’re for registering changes. And the reason they’re clinician-rated is to have an actual clinician in the mix to recognize when a subject is just telling the raters what he thinks they need to hear get them out of his face – which is likely what happened with Dan.
I’m not questioning the rightness of the many things already declared wrong in the story of what happened to Dan Markingson [and his mother]. CAFE was, as many have said, an un-necessary Clinical Trial – what Dr. Bernard Carroll dubbed an experimercial, the Clinical Trials undertaken to advance the sales of a medication rather than to refine our scientific understanding of the drug. I don’t question that the design of the study was flawed [for example, leaving out criteria to determine a non-response to the assigned study drug]. I was as appalled by the way Dan was recruited into and retained in the study as anyone else. And I agree with the recent investigations that shut down the whole clinical research enterprise pending a lot of needed reform.
But I want to add something else to the list. The notion of objectifying and quantifying mental illness is a laudable goal. I’m as much of a numbers/graphs guy as anybody around. But mental illness, particularly severe mental illness, is a subjective experience – and the subjectivity of the person doing the evaluation is an important part of assessment. You can’t see a case in the proxies – you have to see the case. And the objective measures used in clinical trials like a PANSS score are soft proxies as opposed to the Hematocrit or blood chemistries. The people who saw Dan at the Theo House, at OT, at the Day Hospital, his mother – all knew that Dan was very ill all along, but the people in charge didn’t. The biggest ethical breach in this whole story was that his doctor, Stephen Olson, didn’t respond to the loud noises screaming "somethings wrong!" by stopping by the Theo House on the way home and spending some serious time evaluating Dan Markingson in depth, in person. In the article above, Dr. Schulz, the co-principle investigator, regrets that he hadn’t "met with Markingson’s mother, Mary Weiss, to discuss the concerns she raised during and after Markingson’s death." Instead, I want Dr. Schulz to regret that he didn’t drive over to the Theo House and interview Dan Markingson himself, in depth, in person, to have the kind of direct clinical knowledge he would’ve needed to have to have met with and responded to Mary Weiss [maybe he could’ve met her there].
There’s a story of a Zen Master who comes upon a scholar pointing at the moon and lecturing on and on to his students. The Master comments, "that fellow is confusing his finger with the moon." In this case, I’m suggesting that the KOL brand psychiatrists have confused their soft proxies [clinical trials and rating scales] for the actual patients in many instances. In this case, I’m suspicious that they paid attention to the rating scales and not the patient. In other places, they’ve claimed that minor differences have clinical meaning when they don’t. But we often think that all examples portend bad motives, and in some cases they do. But this is an error one can make even without bad motives – by overvaluing secondary information without investigating further.
What always astonishes me is that many of the methodological pitfalls seem so obvious. I mean, at our clinic, our grants were based on stats taken from QIDS scores, and this was because we had a mandate to implement “evidence-based” outcome measures. When this was first explained to us, of course our first reaction was, “You’re kidding, right?”
I am definitely NOT a numbers and graphs guy, so I have always mistrusted my own intuition. And yet, when I read contemporary research on neuroleptics, I am often stunned by the complexity of the research design. “Wait a minute… why did you exclude those subjects? What kind of regression were you doing, how about just telling us how many guys were feeling better and whether they had any side effects? Why do the control and experimental groups seem to be completely dissimilar, and let me re-read your explanation of how you’ve somehow managed to account for that? And what is this variable your controlling for– that just does not seem to make any sense, am I just paranoid, or are you trying to suppress something else in your results?”
How is it that we all buy into this? I think I have some idea.
In 1977, I was coerced by my professor, who shall go nameless (okay, it was Otello Desiderato) to repeat crackpot experiments with extremely affectionate and intelligent little white rats. First of all, this didn’t seem like any science that I had ever heard of. It was a huge leap of faith to imagine that studying what these little fellows might do in a cage would provide a radical new understanding of what a human might do in some far more complex circumstance– that this was psychology’s Big New Idea. Secondly, even though I could accept that some the data was very interesting and useful (and of course a lot of it is) it was clearly pointless to torture more animals when the experiment had already been executed previously by “real” researchers.
My memories of this period were hazy, but I think what happened was I pretty much fed our rat and played with him and made up a lot of data. I got very high scores on my lap reports, but eventually someone noticed that my rat wasn’t skinny enough, and this was treated like some kind of ethical or moral lapse on my part. I do remember being firmly chastised for bonding with the rat as well– most of the other rats did not scamper about playfully when their student approached their cage.
Basically, my behavior in the lab was informed by a deep cynicism, a sense that the entire “experiment” was an exercise in existential futility, and that I was dealing with people who were not to be taken seriously or respected.
And I wonder if a similar attitude, though probably far less playful and irreverent, might be informing clinical trial methodology, at least for the folks collecting the data. The general idea that the fix was already in, the big boys have already gotten paid, and the best thing, really, is to put an end to this unfortunate chapter in our careers and move on. This is what we have to do now so we can something more interesting later, and so on.
I’m not explaining this well; it’s a hard idea to get across because it’s counter intuitive and more than a little frightening. I think what I’m saying is that you can’t earn a graduate degree, or get through a training program, or obtain a professional license without buying into this lie. And when that happens, it may be that you give up a little bit of the integrity that you need to do the right thing when your ethics are really put to a serious test.
Catalyzt,
I took an undergrad psyc course and this guy’s big thing was monkeys raised with no physical interaction, with a wire monkey shape, and a wire shape covered in cloth. He went on for hours about this ground breaking research and how this would impact human behavior understanding.
We were a bunch of business majors and the material was rather obvious, no contact equaled poor psychological development, wire shape, better, cloth shape and nurturing environment equaled the best psychological development. This was boring given the amount of time spent.
What I did learn was about ritualistic feeding and how to use this technique to gain an advantage in a social situation. We can see this concept playing out every day in doctors’ offices around the country with all those free lunches.
Steve Lucas
I am sure if Dr. Schulz sincerely wanted at any time to speak to Mary Weiss, he would have been able to find her and meet with her.
I saw an article recently about a British psychiatrist who almost diagnosed a young man with schizophrenia before realizing that he was using common rhyming slang that the doctor was unfamiliar with. The young man was incomprehensible to the doctor, not because he was thought disordered, but because they came from two different worlds.
I think the only thing Dr Schulz regrets is that he got caught and exposed for chairing a department insulated from feeling compassion for its patients or their family, a department taking the lead from the chair where diagnosis be damned we need subjects, and every principal investigator had his share of pharma ATM cards in their wallets. Mary Weiss, Dan’s mother, wrote three letters to Dr. Schulz in just a few month’s time, he ignored the first two and only responded to the third because it was sent by certified mail. Schulz as chair of the department, had Dr Olson collaborate on his reply to Mary even though Schulz was the chair of the department and a co-investigator for the CAFE’ study…something he neglected to inform Mary of…and his response arrived just a week before Dan died. He praised the work of Olson and the study coordinator, and informed Mary that even if a different drug or an additional drug might help Dan….”they are frequently not allowed in clinical studies.” Schulz’s is nothing more than a carnival barker for pharma and his own bank account.
All,
You’ll recognize that Mike Howard is Mary Weiss’ friend, part of the team whose persistence finally lead to these belated investigations into Dan Markingson’s case [including Mike and Mary, with Carl Elliot, and Leigh Turner – Bioethicists at the University of Minnesota]. The letter he’s referring to written by Olson and annotated by Schultz is here.
Note: I don’t personally think it was the Ativan® that helped Dan in those early hospital days so much as it was the Risperdal® that was stopped when he started taking the study drug, in his case Seroquel®…
Mickey: I certainly agree with you, the Ativan simply allowed Dan to sleep for a night or two, but had nothing to do with treating his psychosis. Mary had raised the issue of Ativan simply because Dan claimed he was calmer after taking it and had slept, something he stated often as the root cause of his psychosis, that he had not slept for a couple of days prior to be hospitalized. Of course we all know that wasn’t the root cause.
“But I want to add something else to the list. The notion of objectifying and quantifying mental illness is a laudable goal. I’m as much of a numbers/graphs guy as anybody around. But mental illness, particularly severe mental illness, is a subjective experience – and the subjectivity of the person doing the evaluation is an important part of assessment. You can’t see a case in the proxies – you have to see the case. ”
My psychiatrist would tell me he’d discussed my particular situation with the other psych docs in his practice so I felt like I was being overseen by the entire staff. As I now know he was only telling them his interpretation of events. They’d never met me let along evaluated me. Maybe if they had sat down with me they’d noticed the severe drug(s) induced Akathisia my psychiatrist was treating as mania/psychosis. Like David Markingson’s situation my treatment/diagnosis was an interpretation by proxie.