NYAPRS Note: Below is part one in a two-part Mad in America series examining the expansion of psychological screening and electronic surveillance in children and youth. As a system and a movement, we need to seek out solutions to critical questions facing youth and families. Part of finding these solutions is critically examining the ways we currently assess and treat persons throughout their youth.
The Proactive Search for Mental Illnesses in Children
Mad in America; Rob Wipond, 7/7/2014
The coroner’s report on the 2010 suicide of Victoria, British Columbia teenager Freya Milne recommended expanding mental health education programs and more proactively identifying and tracking students at risk for mental health problems. In the context of the whole report, though, these final recommendations were perplexing.
By the time she was sixteen, Freya had been grappling with anxiety and suicidal feelings off and on for six years while in an accelerated school program for gifted students. She’d long been involved with psychiatrists, counselors and therapists. In mid-January of 2010, however, she suffered a setback at school and, while experiencing physical symptoms of anxiety, Freya accepted a medication for the first time – the benzodiazepine sedative clonazepam. The medication was not approved for use in adolescents, and carried warnings about unusual changes in mood or behavior and increased suicidal ideation, but the psychiatrist did not convey these warnings to Freya or to her mother. Shelley Milne soon worriedly reported to the psychiatrist that her daughter was behaving in an unusual manner, alternately paralyzed with sadness and anxiety then hypomanic. The psychiatrist, without seeing Freya, increased the dosage and twice re-filled the prescription for clonazepam. On February 2, just three weeks after beginning the medication, Freya took an overdose of codeine, loaded her pockets with rocks, and walked into the frigid coastal waters off Victoria in western Canada.
Freya’s suicide received extensive media attention, but these circumstances remained a mystery to most until the coroner’s report was released in March of 2013. Yet the report made no recommendations with respect to the failure of the treatment provided to Freya, or of the dangers of the drug given to her. Instead, the coroner recommended that the province’s schools should develop a more comprehensive “student information system” that would collect emails, meeting notes, “and anything else pertaining to a student,” and combine that with a new “flagging system on all student files where a child or youth has a diagnosed mental health issue.” In addition, the coroner recommended that mental health education “be a component of continuing education for all teachers and counsellors on an annual basis.” Basically, though the mental health system had failed to help Freya, the coroner recommended that school staff should get more mental health training, and schools should more intensively identify, flag, track and monitor students with mental health concerns.
This was so even though Freya’s case was not an isolated one. It wasn’t even the only high-profile, carefully reviewed case that year in Victoria, a community of just 80,000 people. In October of 2010, sixteen-year-old Hayden Kozeletski began experiencing intense anxiety and asked for help. A teacher took her to a hospital, where Hayden disclosed having been sexually abused. For the next two months, Hayden bounced voluntarily and involuntarily between hospitals and adolescent mental health units, received various psychotropic drugs unapproved for use in youth, and then hung herself. An inquest jury recommended intensifying mental health screening and tracking, and providing more mental health training for all professionals in regular contact with children and youth.
That same year, Victoria teen Kimberly Proctor was raped and murdered by two male peers. Her family gathered thousands of signatures and lobbied government to mandate school “threat assessment protocols” that would proactively identify potentially dangerous, mentally unstable kids and push them into counseling and involuntary psychiatric treatment. Yet court documents showed that both of the boys who killed Kimberly Proctor had been violent previously and had already been involved off and on for years with school administrators, social workers and mental health professionals.
There have been many cases in Canada and the US like these, involving suicides and homicides committed by young people who have been in mental health care. Most are complex situations with many factors involved. Even so, it raises the question: How is it that these tragedies—and clear treatment failures—are so often used as justification to expand the funding, reach and power of mental health professionals? Why are there no broader inquiries into the failure of mental health treatments, and into the possibility that common treatments may have played negative roles in these grave events? Is there some reason that the mental health system is constantly seen as deserving of more funding and authority, and evades true accountability?
The Toronto District School Board announced a four-year plan to give mental health training to all school staff to ensure mental health “is integrated into every aspect of a student’s school experience.”
In British Columbia (BC), amid the deaths and subsequent pronouncements about what needed to be done to prevent such events from recurring, the provincial government launched a training program for family physicians and school staff that promotes mental health screening of all children and adolescents. Similar programs are occurring in other provinces, too, as part of a national strategy called “School Based Mental Health in Canada” that is being pushed by the Mental Health Commission, which was created by the federal government. This year, for example, the Toronto District School Board, one of the biggest school districts in the country, announced a four-year plan to give mental health training to all school staff to ensure mental health “is integrated into every aspect of a student’s school experience.” It’s modeled from a similar program in Nova Scotia led by Canada’s most prominent child and adolescent psychiatrist, Dalhousie University’s Dr. Stan Kutcher, who is also a key advisor on the Mental Health Commission. As the Commission’s report noted, all of this is in turn part of a continent-wide effort involving initiatives like the International Alliance for Child & Adolescent Mental Health & Schools, and the US-Canada Alliance for School Mental Health.
Most of the documents, lectures, and supplemental resources for the BC program are publicly available. They therefore provide a rare glimpse into exactly how psychiatrists typically educate family doctors and school staff in these kinds of programs. And ultimately, say critics, the program’s training materials provide overwhelming evidence that our mainstream mental health system is, for some undeclared reason, being allowed to continually expand its influence without any scientific accountability.
Screening more often wrong than right
According to their press release, the Practice Support Program for Child and Youth Mental Health (PSP-CYMH) is a joint initiative of the BC government’s Ministry of Health and the provincial association of medical doctors, Doctors of BC. It’s led by Dr. Stan Kutcher, along with BC Children’s Hospital’s Dr. Jana Davidson. Family doctors are being trained to conduct mental health screening tests, identify children and youth who are “at risk,” and provide specialist referrals or early intervention treatments for ADHD, anxiety and depression. Doctors are paid over $2600 to attend the 10.5 hour training and put two of their own child patients through screenings. In the past year, over 600 BC doctors have taken the program. According to a PSP-CYMH administrator, the effort is scheduled to expand this fall, with training of school staff to be more proactive “gatekeepers,” funneling kids towards screening tests and treatments.
“The pharmaceutical industry has known for years that being involved in screening is very important,” said Cassels. “So they have put their own people on the committees that have designed the screening tools.”
Many of the PSP-CYMH education materials were authored by Kutcher or BC Children’s Hospital psychiatrists, often in conjunction with others. The whole program is touted as “evidence-based.” But, critics say, scientific problems with this program begin with the screening tools, and permeate the training materials too.
Alan Cassels, a University of Victoria pharmaceutical policy researcher and author of Seeking Sickness: Medical Screening and the Misguided Hunt for Disease, has publicly criticized the PSP-CYMH for using screening tools designed with pharmaceutical industry involvement, just like TeenScreen did. The US TeenScreen program shut down in 2008 in the wake of public protests, lawsuits, and federal investigations into its financial links to pharmaceutical companies, along with associated mounting rates of the medicating of children. Through financial disclosures in scientific journals, Cassels found that, for example, PSP-CYMH scientific lead Kutcher, author of the program’s depression screening test, was connected to at least eleven pharmaceutical companies. “The pharmaceutical industry has known for years that being involved in screening is very important,” said Cassels. “So they have put their own people on the committees that have designed the screening tools.”
The PSP-CYMH advises physicians to give mental health screening tests to all children and youth in their clinics during vaccinations and annual check-ups. “It’s the idea that you can never be too proactive,” said Cassels. However, mental health screening tests that ask children questions like if they “worry about the future,” are “nervous” around strangers, or “feel blah” a lot, as the PSP-CYMH tools do, inevitably create enormous numbers of “false positives,” said Cassels. “It’s so vague, it’s so useless. Taking any kind of range of human emotion and trying to quantify it is a mug’s game. It’s so prone to manipulation.”
The PSP-CYMH training materials state that the Screen for Child Anxiety Related Disorders (SCARED) has demonstrated “excellent” sensitivity and specificity. In the scientific literature, though, it’s clear that, even assuming that as many as 10% of children and youth actually have an anxiety disorder, SCARED will still typically determine that about three times as many kids have anxiety disorders. Similarly, Kutcher’s “Kutcher Adolescent Depression Scale” boasts that this tool has “sensitivity and specificity rates of 92% and 71% respectively—a combination not achieved by other self-report instruments.” A 2011 exchange of letters in theCanadian Medical Association Journal shows that these kinds of numbers mislead even many physicians and mental health professionals who don’t understand the mathematics of screening for relatively low-incidence conditions. What is not clarified in the PSP-CYMH materials is that, using a common assumed rate of depression in youth of 4%, Kutcher’s test will be wrong seven times as often as it’s right; that is, if 1,000 youth are screened, 279 will be “false positives” for depression. Cassels pointed out that a high score could mean that a child is “possibly depressed,” as Kutcher’s rating scale states, but it could just as likely be a measure of how crowded a child’s classroom is, how much he cares about environmental problems, or how vulnerable his sense of himself is to manipulation by suggestive test language. Cassels said mental health screening programs are therefore known for overloading our already over-taxed mental health care systems with people who aren’t even asking for help.
“I can say pretty definitively that we don’t have the evidence that can show that kids who are screened ultimately do better than kids who are not,” added Cassels. “We know that the screening tools will increase the use of psychotropic drugs; that’s the outcome we’ve been able to actually measure. As far as whether those kids ultimately do better, are more successful in school, more likely to graduate, have happier, more successful lives, we can’t show that at all.”
Cassels is not alone in his criticisms. In the June 2013 Canadian Medical Association Journal, the Canadian Task Force on Preventive Health Care stated that they “did not identify high-quality evidence of the effectiveness of screening for depression” in adults, and recommended against doing any depression screening in primary care settings. The Task Force also said that they “remain concerned” about the potential harms from the high rates of false positives and consequent unnecessary treatment, labeling and stigma, and lamented that they could find no studies examining these potential harms. Similarly, in 2009, the US Preventive Services Task Force found no evidence to support screening children for depression, and also recommended against screening for depression in adolescents unless they had ready access to non-drug therapies. The US Task Force couldn’t find a single trial that had assessed whether screening improved mental health outcomes in children or adolescents. In 2014, the US Task Force concluded that all suicide screening was unreliable and “the current evidence is insufficient to assess the balance of benefits and harms.”
“Kutcher was a co-author of one of the most fraudulent, scandalous mental health studies in the last fifty years,” said Cassels.
Despite those findings, the PSP-CYMH training materials instruct doctors to use screening scores to guide medication adjustments. If a child is taking 30 mg of fluoxetine and has a SCARED score that shows no improvement or is worsening, doctors are advised to “increase medication gradually.” In the case of a rising score, they’re advised to “increase [medication] slightly.” With a substantially improving score, they’re to “continue medication at current dosage.”
Cassels said that he believes programs like PSP-CYMH involve many well-meaning people, but those people are “naively” accepting information from others involved who have strong ties to the pharmaceutical industry, like PSP-CYMH scientific lead Dr. Stan Kutcher.
“Kutcher was a co-author of one of the most fraudulent, scandalous mental health studies in the last fifty years,” said Cassels, referring to Study 329, which was featured in Alison Bass’ book Side Effects: A Prosecutor, a Whistleblower and a Bestselling Antidepressant on Trial. It was a highly influential, large-scale study of Paxil in adolescents that went through multiple revisions with the help of a medical writing firm paid for by GlaxoSmithKline, as crucial data about adverse effects were hidden and key markers and interpretations of the outcomes were changed. The U.S. Department of Justice summarized that the final article “distorted the study results and gave the false impression that the study’s findings were primarily positive, when they were, in fact, primarily negative.” In the same $3 billion lawsuit settlement, GlaxoSmithKline also admitted bribing physicians with “expensive meals, weekend boondoggles, and lavish entertainment” and “cash payments” cloaked as consulting fees.
“The conclusions of Study 329 were completely contrary to the body of evidence about the safety of those drugs in children,” said Cassels. “In my opinion, the people who put their name to that study should be in jail.”
Scandalous lies or business as usual
Elia Abi-Jaoude also described Study 329 as “ludicrously scandalous,” but he hastened to point out that it’s not an aberration. Abi-Jaoude is a neuropsychiatrist affiliated with the University of Toronto who sometimes treats children and is part of an international team that is currently re-analyzing for re-publication the original trial data from Study 329. Abi-Jaoude said innumerable psychiatric studies have been equally manipulated by pharmaceutical industry influences, but most of them don’t become the target of government lawsuits and public exposés. “Study 329 is a good representative of practices that pervade the literature,” said Abi-Jaoude, adding that he believes this is why the Journal of American Academy of Adolescent and Child Psychiatry still hasn’t retracted Study 329, and why the study’s false conclusions and co-authors like Kutcher remain immensely influential.
Abi-Jaoude doesn’t endorse mental health screening programs. “The evidence doesn’t support screening,” he said, while adding that potential harms are obvious. “Labeling someone, especially at such a young age, with having a mental illness is no small matter. You’re contributing to their identity at a very vulnerable time in their lives. The other thing it opens up as a risk is interventions that are unwarranted and are potentially harmful, especially at a vulnerable stage of the lives of these young, developing brains.”
The PSP-CYMH materials often discuss the importance of first trying to help children through practical supports, coping strategies, cognitive behavioral therapy, exercise and healthy eating; however, the spectre of conditions requiring more intensive interventions is never far in the background, if a child or youth is “not functioning as well [as normally]” over “more than several weeks.” Notably, the PSP-CYMH doesn’t provide physicians with any substantive training in non-drug approaches, while BC’s public health care pays for physicians and most drug costs but very little for any non-drug therapists or approaches. Yet there seem to be no discussions about risks of over-diagnosis or over-medicating in the PSP-CYMH materials, even though prescribing of antipsychotics to children has increased four-fold in BC since 1996 and ADHD medicating has tripled in ten years.
“I don’t believe people promoting such programs are particularly concerned about the risk of the inappropriate diagnoses of mental illnesses, or the inappropriate use of our interventions,” commented Abi-Jaoude. “I stop medication at least as much as I start. It is routine to see people on inappropriate medications, or too many medications.” Many psychiatric drugs can have very serious, damaging side effects, especially over the long term, explained Abi-Jaoude, adding that, “Evidence for the long-term use of medications, whether in children or adults in psychiatry, is sorely, sorely lacking.”
The PSP-CYMH materials often indicate that kids could be taking psychiatric medications over the long term, yet there seems to be no discussion of that severe dearth of long-term safety and efficacy evidence. The training materials even repeatedly assert that antidepressants decrease suicidality in adolescents, though Canadian and U.S. health regulators have issued warnings to physicians about clinically observed increases in suicidality in youth taking antidepressants.
Medical education or drug promotion program?
Mickey Nardo is a retired psychiatrist, psychotherapist and internist who blogs about current psychiatric research as 1 Boring Old Man – he’s also part of the team re-analyzing Study 329. When read quotations from the PSP-CYMH materials, he became increasingly concerned about how often they strayed from any relationship to the scientific evidence base and became more like propaganda.
Ellie’s Depression, an animated video for kids from Dr. Kutcher’s TeenMentalHealth.org and the PSP-CYMH, compares the brain to a mood-regulating thermostat.The two dotted lines mark our levels of happiness and sadness, says Ellie.The straight line in the middle between happy and sad, Ellie explains, is the ‘just right’ mood that we should never move away from for very long.Ellie says she’s learned to take medications ‘to help my brain work’ so she can stay on that ‘just right’ middle line.
For example, Kutcher begins a lecture on “Pharmacologic Treatments” by instructing physicians “to be really aware of the language” that they use. “If we use the word ‘drug’ treatment, that has particular connotations for people,” says Kutcher, pointing to various negative impressions of that word. “So when you offer your patient a medication, [say that] it’s a medicine as opposed to a drug.” Kutcher emphasizes that the choice of words is important because it’s part of an “ideology” battle between people for or against psychiatric medications.
That’s just “sales language,” commented Nardo. “It’s a way to sell that these are medications and not street drugs.” He pointed out that, in fact, the vast majority of psychiatric medications are more like symptom-masking headache drugs than disease-fighting medicines.
This theme of how best to communicate about psychiatric medicines continues in a key PSP-CYMH training document co-authored by Kutcher, “The Life Span and Mental Disorders: An overview and useful tips for primary care practice.” In the section about “engaging” and “educating” patients and their families, the document describes how “there may be resistance to, or denial of, the diagnosis and rejection of recommended treatments.” In such situations, doctors are advised, “Psycho-education that identifies mental illness as a brain disorder is a useful technique by which to challenge these misperceptions, gain patient and family trust, and redefine understanding of the illness.”
This section also describes common “myths” and “misconceptions” regarding psychiatric medications that doctors should dispel. These “misconceptions” include the statements, “Medications are detrimental to general health and well-being,” and “Psychiatric medications are addictive.”
Nardo called this unqualified, misleading characterization “shameful,” pointing out that an entire class of widely used psychiatric drugs – the anti-anxiety benzodiazepines – is highly addictive, and many others are difficult to withdraw from. (Health Canada and the FDA also identify most ADHD drugs as addictive.) Meanwhile, the long-term adverse effects of many psychiatric drugs, from obesity and diabetes to growth suppression, sexual dysfunction, and liver and kidney damage are well documented.
“Increase medicine based on a rating scale… We just don’t have that kind of precision in mental health,” said Nardo. “It’s crazy.”
When read the instructions to use SCARED scores for adjusting antidepressant medication levels, Nardo was nonplussed. “Even in hard-core internal medicine, we don’t do this kind of thing. Increase medicine based on a rating scale… We just don’t have that kind of precision in mental health,” said Nardo. “It’s crazy. I wish I could say something erudite about that, but it just seems nuts to me.”
Throughout the PSP-CYMH materials, there are frequent assertions about the biomedical basis of mental illnesses. Various materials suggest that there’s “strong” evidence of “genetic” causes of mental illnesses, describe mental illnesses as “like any other physical disease,” compare psychiatric drugs to insulin for diabetics, and suggest psychotropics balance brain chemicals that “are not working well.”
Nardo’s reaction to these quotes? “This is the far right. This is the American Tea Party version of biological psychiatry.” He said such statements “push a particular view of mental illness” which is “a denial of the mind, of psychology, of bad parenting, of abuse, of social disorder, of all of the other things that we know are huge factors in the life of children. It just denies all of that and simplifies it down to, ‘They’ve got bad chemistry.’” Nardo said there’s no scientific evidence to support these PSP-CYMH statements, and said he personally knows many biological psychiatrists who “rave” in outrage when they hear such far-fetched assertions. Indeed, a recent official statement from the American Psychiatric Association acknowledged that there are no biological markers of any kind for any mental disorders.
Accountability to the public?
Both Dr. Kutcher and BC Children’s Hospital’s Dr. Jana Davidson would not agree to be interviewed by Mad In America, and also wouldn’t answer any specific questions by telephone or in writing about the scientific evidence informing the PSP-CYMH materials. And despite their communications offices apparently making efforts, neither Doctors of BC nor BC Children’s Hospital could provide any psychiatrist to be interviewed about the scientific evidence. The BC government also did not provide anyone. Even the communications staff atTeenMentalHealth.org – an organization led by Kutcher whose website declares, “We are thrilled to provide expertise and advice in many areas of adolescent mental health and do our best to accommodate all media requests” – said to try again in several weeks, and then in six months.
“The science is shaky and they know it,” commented Cassels. “If their positions were supportable they would be able to cite the scientific evidence quickly and easily.”
Nardo similarly speculated that the PSP-CYMH psychiatrists know their training program is based more in opinions than solid evidence, but they’d be reluctant to admit that publicly. “It’s something they think, it’s not something they know,” said Nardo. “I think a lot of things, too, but I’m not sitting here trying to sell you what I think.”
Eventually Dr. Tyler Black of BC Children’s Hospital (BCCH) responded in writing to a small number of concerns raised by critics about both the PSP-CYMH program and its informational handouts about specific drugs developed by BCCH psychiatrists.
Black wrote, “[T]he goal was to create documents that are readable at a grade 6-8 reading level. Terms such as autonomic dysfunction and catatonic stupor are not appropriate for use in a patient education document.”
The handouts about antipsychotics warn families about the “fever,” “sweating” and “irregular heartbeat” characterized by the onset of antipsychotic-induced neuroleptic malignant syndrome, and advise contacting a physician immediately. The handouts do not warn of the more serious potential consequences that health regulators warn about, such as autonomic dysfunction, catatonic stupor, and the fact that the syndrome is fatal in 10-20% of cases. Asked about this, Black wrote, “[T]he goal was to create documents that are readable at a grade 6-8 reading level. Terms such as autonomic dysfunction and catatonic stupor are not appropriate for use in a patient education document.” Black did not comment on the omission of “potentially fatal.”
“In grade 6 to 8, I understood the word death,” commented Nardo. “He’s selectively reporting… He’s not giving you X% get neuroleptic malignant syndrome, X% die. It’s like the mumbling at the end of the commercials on our stupid direct-to-consumer ads: You might die, your head might fall off, you may never walk again, but meanwhile in the background the music plays.”
No discussions of the problems of over-diagnosis were readily apparent in the PSP-CYMH materials. And tardive dyskinesia (TD), which is characterized by repetitious, uncontrollable motor movements, is described in the BCCH handouts as a “rare” side effect of antipsychotics, even though statistically somewhere between dozens and several hundred children per year in BC are likely developing the often permanent motor dysfunction. Asked if BCCH was concerned that the PSP-CYMH could ultimately lead to further increases in the number of children and youth developing TD, Black did not dispute these numbers, but replied that, “We are not concerned that primary screening, or supporting primary care providers with psychiatric education will increase the amount of TD in children.”
“Why isn’t he worried?” Nardo said, shocked. “There’s nothing casual about giving an antipsychotic to a child. It’s something you worry about.”
As to why the PSP-CYMH materials were not very forthcoming about the dearth of evidence for the long-term safety and efficacy of psychiatric medications in kids, Black cited a few studies of 1-2 years in length and wrote, “The lack of trials is a cause of concern for all of us in child and adolescent psychiatry, but it is important to recognize that the absence of evidence is not evidence of absence.”
In line with this sort of thinking, Kutcher and other members of the PSP-CYMH design team evaluated their own program in the November 2013 Journal of the Canadian Academy of Child and Adolescent Psychiatry. They determined that the PSP-CYMH increased family doctors’ abilities to more readily identify mental disorders in children and youth and treat them. Whether this actually had any positive impacts on children’s lives wasn’t evaluated. “The initial results encourage broader roll-out” of the program, they concluded. They declared no conflicts of interest.
Jack and Jill Have ADHD is a video for kids from PSP-CYMH and TeenMentalHealth.org. Jack forgets that he’s fallen down and chases a bird and then a butterfly. Jack is told that medication could prevent this attention disorder from leading to a future of depression and unemployment. Jill warns Jack that without treatment, ‘It’s a slippery slide going downhill.’
So how can a prominent program of this kind, that could ultimately affect so many children’s lives in such profound and potentially damaging ways, be so utterly immune to accountability – either scientifically or politically? Is its propaganda really so persuasive? Or are there other reasons that governments are so eager to fund initiatives like the PSP-CYMH?
It is easy to suspect that the BC government’s support for the PSP-CYMH may be linked to the pharmaceutical industry. The BC Chief Coroner, who ultimately controls all coroner’s report recommendations from deaths like Freya Milne’s, is a provincial political appointee, and Cassels and the Vancouver Sun exposed that over the past ten years, pharmaceutical companies have donated 14 times as muchto BC’s current governing party as to the main rival party. Industry representatives meet with government officials regularly. The government has made a slew of pharma-friendly decisions, including stacking industry representatives on a drug policy task force, and firing or cutting funding to researchers who’ve criticized certain drugs or raised the ire of the pharmaceutical industry.
However, health policy analyst Wendy Armstrong suggested that understanding support for the PSY-CYMH purely in terms of financial influences limits our understanding of broader political movements going on. Programs like the PSP-CYMH, she said, are really one small part of a dramatic expansion of psychological screening, surveillance and risk management systems targeting children and youth going on internationally. And this is a trending approach to governance, she and other experts argued, in which not being scientifically or democratically accountable is central to how the programs operate and exert powers over citizens.
Coming Thursday: Part Two – The Algorithmic Managing of ‘At-risk’ Children