You won’t hear psychiatrists say this often (and I am a psychiatrist): People recover from schizophrenia.
Something that has long been accepted as a truism by psychiatrists around the world is a belief, promulgated by Emil Kraepelin, the director of a German asylum in the late 1800s, that schizophrenia has an inevitable downhill course. Kraepelin called the illness “dementia praecox” (progressive illness of early life) to hammer home this idea. The concept is reinforced for psychiatrists by the fact that they rarely see people who have recovered from the illness; the recovered patient just stops coming in to see them and returns to a normal life.
Some events transform our professional lives. The first in my career was a conference in Palo Alto in 1977. I was a raw, young psychiatrist when Loren Mosher and his colleagues presented the results of the Soteria study. At that meeting I learned a truth from which my training had protected me – that people can recover from schizophrenia without medication.
Soteria was a therapeutic milieu for young people who met criteria for schizophrenia that was designed as a gentler alternative to the psychiatric hospital. The program, established in a house on a street in San José, California, offered a calming, respectful environment that tolerated individual differences. Staff were encouraged to treat residents as peers and to share household chores, creating an ethos of shared responsibility for running the house and being part of a mutually-supportive community. AnTo post a response to this blog please visit The Recovery Trust.
The Recovery Trust, a Colorado-based nonprofit, has added a new resource for families in need of education and support. It is a free, secure, online forum through which family members can join with others in the same situation.
The forum is moderated by a team of mental health professionals, psychiatrists, family members and people who have experienced mental illness, all of whom have received extensive training in their role as facilitators. Users of the forum can access a large database of information about these illnesses, FAQs and links to other resources.tipsychotic medication was rarely used.
The Soteria project demonstrated that long-term outcome for residents of the therapeutic household was similar to that of patients admitted to standard hospital-based treatment where antipsychotic medication was routinely used. The Soteria approach has since been replicated in California, Alaska, and several countries in Europe.
Coming away from the Soteria conference, I was infused with a passion to understand the true course and outcome from schizophrenia. For months, I ferretted around in the dusty basements of medical libraries unearthing twentieth-century research studies from all over the world. Outcome from schizophrenia has been a popular topic for psychiatrists to study, in the US, Britain, Scandinavia and beyond, since the late 1800s when it was first defined as an illness by Kraepelin. I brought this analysis of over a hundred studies in schizophrenia up-to-date in 2004, incorporating results from the entire century. It demonstrated that optimism about outcome from schizophrenia is justified. Throughout the century around 20% regularly achieved “social recovery” (economic and residential independence and minimal social disruption) and another 20% achieved “complete recovery” (loss of psychotic symptoms and return to the pre-illness level of functioning). This was true for the whole century, except the Great Depression, when recovery rates were halved. Long-term outcome did not improve at all – in fact it got worse – after the introduction of antipsychotic medication in the mid-1950s.
These results aren’t just ancient history. Support for this level of recovery comes from a number of recent studies. A 2007 Chicago-based 15-year follow-up of people with schizophrenia found 19% to be in complete recovery. A 2008 study from Hamburg, Germany, found that 17% of nearly 400 patients with schizophrenia achieved complete recovery after a 3-year follow-up period, and an 8-year study of people with schizophrenia in Dublin, published in 2009, found 39% to be socially recovered. All these results are closely in line with the results of the twentieth-century studies.
It emerges that one of the most robust findings about schizophrenia is that a substantial proportion of those who present with the illness in high-income countries will recover completely or with good functional capacity. Surprisingly, outcome is even better in low- and middle-income countries. Kraepelin’s view that a deteriorating course is a hallmark of the illness proves not to be true; heterogeneity of outcome, both in terms of symptoms and functioning, is the signature feature.
Knowing what I know now, when I see a patient with a first episode of psychosis I don’t start antipsychotic medications right away, especially if the onset is very acute. I wait a few days to see what transpires. If I eventually decide that the person does suffer from schizophrenia, the first thing I tell the family is: This is an illness that generally gets milder as time passes.
Let’s put Emil Kraepelin behind us. We know what we need to know to be able to stop telling patients and families that the outlook from schizophrenia is dismal.