With one of the highest mental health spending rates in Europe, the Netherlands is undergoing a dramatic rethinking of how to provide mental healthcare, a rethinking now gaining momentum throughout the region. In a recent interview with Dr. van Os on Madness Radio — one of the most prestigious scientists in the world, in the top 1% of most-cited researchers, and a member of the Royal Dutch Academy of Sciences — I got a glimpse of what is starting to emerge. Changes in The Netherlands have potential to influence mental healthcare worldwide.
Meaningful change can’t just “improve the standard of care.” It must recognize that the entire standard is based on faulty measurements. First, there needs to be a a new definition of health. Van Os points to how the antiquated definition of health as “absence of symptoms of disease” leads to massive overtreatment and disregard for meaningful outcomes in individual lives — Not just in mental health, but across healthcare. He points to Huber and colleagues, writing in the British Medical Journal, who describe a new consensus emerging to define health as the “ability to adapt and self manage in the face of social, physical, and emotional challenges.” (In our popular education work on medication at the Freedom Center and The Icarus Project, we came up with a similar definition in the context of “harm reduction” for mental health: health as the capacity to be empowered.)
Under the current standard of care we can, for example, demonstrate the very poor relief from psychotic symptoms realized through anti-psychotic medication use, and show how more selective use of medications — and avoidance of long term use — results in better treatment outcomes. But when we rethink the concept of “health” itself, and move beyond measuring the absence of disease symptoms, we start to address something far deeper and more meaningful. We get at what the Hearing Voices Movement and mental diversity mutual support groups, led by patients around the world, have been pointing to: we can live with so-called symptoms and define recovery in human terms that embrace individual differences, and foreground the agency and empowerment of the person involved. A new definition of health builds a bridge across the “disease model” that has resulted in a separation of the movement from medical practice.
In this context, van Os points to the failure of the medical model approach to psychosis, including schizophrenia, resulting from the archaic Kraepelin asylum system of categorical disease diagnosis. Kraepelin’s 19th century diagnostic system emerged from the needs of population control in asylum management, not meaningful medical investigation. Instead, if we rethink illness, we can then more honestly describe “psychosis” as a spectrum of experience, not an either-or marker of the presence of some presumed but never-proven disease process. (Van os and colleagues have been leading efforts to abolish the “schizophrenia” label on these grounds.)
This approach allows medicine to address a core paradox of the disease model of psychosis, a paradox demonstrated by van Os’s research and countless studies from Europe, the US, and cross culturally: every “psychotic” experience — from hearing voices to paranoia to disorganized speech to strange ideas to manic bursts of inspiration to silent inward collapse — also appears in the “normal” population to some degree or another, without necessitating either distress or medical treatment. “Psychosis” is a human variation, not a disease. The “illness” is — again going back to the redefinition of health — the lack of capacity for adaptation and self-management in the face of challenges.
That psychosis is human variation is easily demonstrated: take anyone and deprive them of sleep for long enough, and they will start to experience psychosis. Some of them will value what happens and find meaning in their visions and voices; others won’t. What people need help with is empowerment, adaptation, and management of challenges – often wrapped up in so-called psychotic experiences, but not intrinsic to them. Every “psychotic” crisis is wrapped up in life challenges and problems, especially family conflict and abuse, which has also been pointed out by the work done by van Os and others around the etiology of psychosis.
The psychiatric survivor and “mad” movement today is a continuation of a revolution launched by the women’s movement and gay rights movement, and we do well to remember the history of homosexuality as a psychiatric disease. Psychiatrists looked at homosexuality in society, and saw higher rates of suicide, addiction, anxiety, depression, and other problems among people with same-sex attraction. They mistakenly concluded – predictably – that homosexuality is a disease. But same-sex romantic and sexual attraction itself was not responsible for these problems: homophobia was. It is the response to diversity, not the diversity itself — including the internalized response, as those of us who are not heterosexual know about the poison of internalized homophobia — that is the issue.
Everything we call “psychosis” is likewise just human diversity: no psychotic trait is intrinsically disordered or associated with suffering itself, until the issues of adaptation, self-management, and empowerment come into the picture. In fact, as we at The Icarus Project have been talking about for many years, much of what gets called “mad” might also be a creative and positive contribution looking for a world that welcomes it. Hearing voices, considering suicide, perceiving plots around you, perceiving subjection to mind control, believing in demons, falling silent, breaking with “productive” behaviors, visions, racing thoughts, intense sadness – it’s all quite normal to someone somewhere. What makes it suffering is context and response: the self-management, adaptation, isolation, and empowerment the person experiences.
Especially refreshing to me was learning van Os’s clear understanding of the so-called “evidence-based” approach to medicine. Not only do we need to redefine health, we also need to recognize that just because some treatment is shown to be better than placebo in clinical trials means nothing to an individual’s experience. Relationships of caring and healing are consistently shown to be what helps people, whether they include placebo or the latest treatment fad. Grouping people in aggregates of treatment response in clinical trials markets products and advances careers, but it denies the variability of individuals. And in medicine it is always individuals, not group aggregates, that receive treatment.
When I met van Os at the Crazywise conference in Holland he presented something unlike any other psychiatrist I have come across: a clear vision, and a pathway, for dismantling the existing mental health system and replacing it with something new that actually works. And he is doing it with all the status and prestige of not only a psychiatry insider, but of one of the world’s leading scientists. Along with changes in the definitions of health and psychosis, and the role of “evidence-based practice,” van Os described pilot programs now underway in The Netherlands to downsize large bureaucratic medical delivery and establish small, human-scale services — inspired by Open Dialogue — that respond by engaging the social network of people in distress. And, inspired by the best of the US “peer” movement, by involving people who have themselves recovered from madness in a treatment role.
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What if psychiatry recognized that schizophrenia does not exist? How might diagnostic categories (left over from the asylum era) be replaced by spectrums of experience? What if services were oriented around individuals, not the statistical groups of “evidence based” research? And could a new definition of health as empowerment, not the absence of disease symptoms, replace the mental health system as we know it?
Jim van Os, professor of Psychiatric Epidemiology at Maastricht University and member of the Royal Dutch Academy of Science with more than 700 publications, is in the top 1% of cited scientists in the world. His research combines with the experiential knowledge of people with lived experience of psychosis to envision a radically new direction for the mental health system.
TEDx “Connecting To Madness”