“The only thing we heard was . . . that medication is the answer”

I recently posted on the potential harms of overtreating ADHD and its overdiagnosis. Now, the NY Times reports on problems with a study that provided the foundation for the explosion on stimulant treatment for ADHD.

Twenty years ago, more than a dozen leaders in child psychiatry received $11 million from the National Institute of Mental Health to study an important question facing families with children with attention deficit hyperactivity disorder: Is the best long-term treatment medication, behavioral therapy or both?

The widely publicized result was not only that medication like Ritalin or Adderall trounced behavioral therapy, but also that combining the two did little beyond what medication could do alone. The finding has become a pillar of pharmaceutical companies’ campaigns to market A.D.H.D. drugs, and is used by insurance companies and school systems to argue against therapies that are usually more expensive than pills.

But in retrospect, even some authors of the study — widely considered the most influential study ever on A.D.H.D. — worry that the results oversold the benefits of drugs, discouraging important home- and school-focused therapy and ultimately distorting the debate over the most effective (and cost-effective) treatments.

The study was structured to emphasize the reduction of impulsivity and inattention symptoms, for which medication is designed to deliver quick results, several of the researchers said in recent interviews. Less emphasis was placed on improving children’s longer-term academic and social skills, which behavioral therapy addresses by teaching children, parents and teachers to create less distracting and more organized learning environments.

Recent papers have also cast doubt on whether medication’s benefits last as long as those from therapy.

The study’s primary paper, published in 1999, concluded that medication “was superior to behavioral treatment” by a considerable margin — the first time a major independent study had reached that conclusion. Combining the two, it said, “did not yield significantly greater benefits than medication” alone for symptoms of the disorder.

In what became a simple horse race, medication was ushered into the winner’s circle.

“Behavioral therapy alone is not as effective as drugs,” ABC’s “World News Now” reported. One medical publication said, “Psychosocial interventions of no benefit even when used with medication.”

Looking back, some study researchers say several factors in the study’s design and presentation to the public disguised the performance of psychosocial therapy, which has allowed many doctors, drug companies and schools to discourage its use.

First, the fact that many of the 19 categories measured classic symptoms like forgetfulness and fidgeting — over academic achievement and family and peer interactions — hampered therapy’s performance from the start, several of the study’s co-authors said.

A subsequent paper by one of those, Keith Conners, a psychologist and professor emeritus at Duke University, showed that using only one all-inclusive measurement — “treating the child as a whole,” he said — revealed that combination therapy was significantly better than medication alone. Behavioral therapy emerged as a viable alternative to medication as well. But his paper has received little attention.

“When you asked families what they really liked, they liked combined treatment,” said Dr. Peter Jensen, who oversaw the study on behalf of the mental health institute. “They didn’t not like medicine, but they valued skill training. What doctors think are the best outcomes and what families think are the best outcomes aren’t always the same thing.”

The parallels here are striking. The pattern is well established.

  • Government involvement in the research gives the appearance of objectivity—”the National Institute of Mental Health gathered more than a dozen top experts on A.D.H.D. in the mid-1990s to try to identify the best approach”
  • The study used outcome measures that favored medication—”The study was structured to emphasize the reduction of impulsivity and inattention symptoms, for which medication is designed to deliver quick results, several of the researchers said in recent interviews.”
  • And de-emphasized outcome measures that favored behavioral treatments—”Less emphasis was placed on improving children’s longer-term academic and social skills, which behavioral therapy addresses”
  • The biased study produces predictably biased outcomes—“Behavioral therapy alone is not as effective as drugs”
  • Very biased outcomes—“Psychosocial interventions of no benefit even when used with medication.”
  • The outcomes neglect real-world quality of life measures—”What doctors think are the best outcomes and what families think are the best outcomes aren’t always the same thing.”
  • Studies with different findings were ignored—”The only thing we heard was the first finding — that medication is the answer”
  • Medication doesn’t look so great in long term studies—”Using an additional $10 million in government support to follow the children in the study until young adulthood, researchers have seen some of their original conclusions muddied further.”
  • Hindsight yields a little humility—”Most recently, a paper from the study said flatly that using any treatment “does not predict functioning six to eight years later,” leaving the study’s original question — which treatment does the most good long-term? — largely unanswered.”
  • Hindsight also yields regrets—”I hope it didn’t do irreparable damage. The people who pay the price in the end is the kids.”
  • Unfortunately, the genie is already out of the bottle—posts from earlier this month point to the potential harm, the selling of the diagnosis and the explosion in diagnosis.

“Disease” and recovery

“Once I became my diagnosis, there was no one left to recover.”

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(Photo credit: Robbie Wroblewski)

Yesterday’s Pat Deegan post led me to Dr. Daniel Fisher’s work on mental illness recovery. He promotes an “empowerment” model of recovery that he contrasts with a “rehabilitation” model of recovery.

According to this vision, one is capable of recovering from the mental illness itself, not merely regaining functioning while remaining mentally ill. … We realize that the idea that people can recover from mental illness will create more work on the part of entitlement programs. Instead of a single, once-in-a-lifetime determination of disability, episodic periods of disability will need to be supported.

In this model, treatment is part of self-managed care. The goal of treatment here is assisting people in gaining greater control of their lives and assisting them in regaining valued roles in society. The primary goal of treatment should not be to control the person’s behavior. The use of medication does not itself mean that a person has not recovered from mental illness. It depends upon the degree to which the person and those around them see the medication as constantly needed. Ideally, each person should learn to take medication on an as-needed basis, after having learned to self-monitor. Many people also embrace holistic health as an alternative to medication.

One of the things I find fascinating about this movement is that they challenge the brain disease model of mental illness.

Not surprisingly, many researchers have concluded that medication alone is best for the treatment for mental illness. Despite recent convincing research showing the usefulness of psychotherapy in treating schizophrenia, psychiatric trainees are still told “you can’t talk to a disease.” This is why psychiatrists today spend more time prescribing drugs than getting to know the people taking them.

I, too, used to believe in the biological model of mental illness. Thirty-one years ago, as a Ph.D. biochemist with the National Institute of Mental Health, I researched and wrote papers on neurotransmitters such as serotonin and dopamine. Then I was diagnosed with schizophrenia — and my experience taught me that our feelings and dreams cannot be analyzed under a microscope.

Schizophrenia is more often due to a loss of dreams than a loss of dopamine. At the NEC, we try to reach out across the chasm of chaos. I know there are many people who feel they have done all they can, have struggled against mental illness to no avail, and we understand their pain. Yet we believe that recovery is eventually possible for everyone — although it can take a long time to undo the negative messages of past treatments. We can offer hope from first-hand experience.

Another post identifies common factors in these recovery experiences. I’ve summarized them. It’s worth noting that that author reports that people achieving recovery reported that traditional psychiatric treatment was a barrier to achieving these factors.

Factor #1Hope in the possibility of real recovery. All participants in all three of my research studies expressed that in order to even begin the journey towards real recovery, they first had to believe that such recovery is actually possible.

Factor #2Arriving at an understanding of their psychosis alternative to the brain disease theory. Every participant went through a process of developing a more hopeful understanding of their psychotic experiences, generally coming to see their psychosis as a natural though very risky and haphazard process initiated by their psyche in an attempt to cope and/or heal from a way of being in the world that was simply no longer sustainable for them.

Factor #3Finding meaning. All participants expressed how important it was for them to connect with meaningful goals/activities that made their life worth living—that provided them with some motivation to greet each new day with open arms and to channel their energy productively.

Factor #4Connecting with their aliveness. All participants reported how important it was for them to connect more deeply with themselves—particularly with their feelings, needs, and sense of self agency.

Factor #5Dealing with their relationships. All participants expressed the importance of healing and/or distancing themselves from unhealthy relationships and cultivating healthy ones.

Rethink Mental Illness
Rethink Mental Illness (Photo credit: Wikipedia)

It seems that the biggest objection to the disease model is that mental health consumers experience this model as something that puts them in a passive position, waiting for someone or something to come along and hopefully mend their broken brain just enough to allow them to get through life with something less than full personhood.

This article in Friday’s Wall Street Journal gets at the same thing with respect to much less severe mental illness as experienced by young people.

When I first began to take antidepressants, I understood that doing so meant I had a chemical imbalance in my brain. I knew that, arguably, I should find that comforting—it meant that what I was going through wasn’t my fault—but instead it made me feel out of control. I wanted my feelings to mean something. The idea that my deepest emotions were actually random emanations from my malfunctioning brain didn’t uplift me; it just further demoralized me.

In my 20s, I sought out talk therapy, partly to deal with the questions that using antidepressants raised for me and partly because the effects of the drugs, spectacular in the short term, had waned over time, leaving plenty of real-world problems in their wake. Only then did I begin to notice just how nonrandom my feelings were and how predictably they followed some simple rules of cause and effect.

Looking back, it seems remarkable that I had to work so hard to absorb an elementary lesson: Some things make me feel happy, other things make me feel sad. But for a long time antidepressants were giving me the opposite lesson. If I was suffering because of a glitch in my brain, it didn’t make much difference what I did. For me, antidepressants had promoted a kind of emotional illiteracy. They had prevented me from noticing the reasons that I felt bad when I did and from appreciating the effects of my own choices.

What’s so interesting about this is that people with addictions have a completely different experience. Within the context of addiction recovery, discovering that one has the illness of addiction means that one has a lot of work to do and a lot of responsibility for their recovery. This model is not without its limitations, but it’s amazing how many people find an admission of powerlessness  to be so empowering.

I have two thoughts.

First, there seems to be a parallel here. People band together in response to the failure of existing institutions and, together, find an alternative path to recovery. The institutions use their size, wealth, connections, research and publications to de-legitimize this path to recovery. It’s probably a very good thing that PhRMA didn’t have a stake in addiction treatment in 1935.

Second, as the Affordable Care Act is implemented and we need to start really grappling with the cost of chronic diseases, this empowerment model of recovery fits very well with a lifestyle medicine approach. Unfortunately, our medical system is not structured (staffing, reimbursement, monitoring, research, etc.) to support this approach.

I think mental health and addiction treatment have a lot to learn from lifestyle medicine, but I also think addiction and mental illness recovery movements have a lot to teach lifestyle medicine about how patients can maintain wellness over decades.

NOTE: Dawn Farm is not anti-medication, though we do have concerns about the way they are used. More information here.