SAMHSA has been at the forefront of trying to rectify the misconceptions, ignorance, and assumptions around mental illness, addiction, and the potential for full and holistic (health, home, community, purpose) recovery for a very long time now and this has not been an easy effort, I assure you.
I know this, because I currently toil in the wasteland between the field of Addiction and Mental Health, endeavoring - with so many others - to build a bridge between them both. This of course is in addition to attempts to raise the awareness and remove the misconceptions, ignorance, and assumptions of the general public and frankly among many individuals within each cohort of service providers.
Some days, it truly feels as if we've all collectively been banging our heads against the wall while speaking into the proverbial black hole, so I've come to appreciate on a much deeper level information that helps dispel the ignorance in a succinct and concise way.
Case in point:
Do people really recover? And if so, why don't I see them?
Philippe Pinel, often considered the father of psychiatry, wrote in 1808, "To consider madness as a usually incurable illness is to assert a vague proposition that is constantly refuted by the most authentic facts" (Pinel, 2008). Pinel, in fact, reported a recovery rate of 93 percent for people who had been admitted to his hospital within a year of onset of their mental health difficulties and who had not received prior treatment at an asylum (treatment that was often violent and that Pinel viewed as detrimental). Similar recovery rates were seen in other moral treatment retreats prior to the creation of large State mental hospitals, which unfortunately came to resemble the pre-moral treatment-era asylums in providing primarily custodial care in overcrowded institutions.
It is from this approximately 100-year period of large asylums, between 1850 and 1950, that we owe our beliefs about the incurability of mental illnesses and why the questions above have become two of the most common raised by mental health professionals when confronted with the long-term outcome literature that has been consistently produced since the 1970s (Carpenter & Strauss, 1974; Harding et al., 2005; Strauss & Carpenter, 1974).
45–65% of people diagnosed with schizophrenia will recover from the disorder over time.This literature suggests that between 45 percent to 65 percent of people diagnosed with schizophrenia—the most severe of the severe mental illnesses—will recover from the disorder over time. The recovery rate Harding and colleagues (Harding, Brooks, & Ashikaga, 1987; Harding et al., 1987b) found in rural Vermont was around 65 percent, while a World Health Organization study found about 45 percent in Boston and Washington, D.C. (World Health Organization, 2001). These are the percentages of people who recovered fully (that is, no longer appeared to have any signs or symptoms of mental illness). The percentages for people who experienced significant improvements would be even higher than that. In contrast, most studies found only about 20 percent to 25 percent of any given sample experiencing a deteriorating course over time (Carpenter & Strauss, 1991; Davidson & McGlashan, 1995; Harding et al., 1987a; Harding et al., 1987b).
Despite the consistent literature documenting recovery over the last 40 years, this good news still has not made its way into the training of most mental health professionals. So, many mental health professionals, when exposed to this body of research, ask the questions above. If so many people get better, then why don't I ever see them? A reasonable enough question, to be sure, and one to which there are several answers.
Clinicians do not see people who are, or when they are, well.The first answer comes from a husband-and-wife team of statisticians in the 1980s, Cohen and Cohen (1984), who wrote the seminal paper cited below about what they described as the "clinician's illusion"; in essence, a sampling error of patients within the clinical setting. The Cohens showed that people who work in clinical settings, i.e., clinicians, see people who are ill when they are most ill and often only when they are ill; clinicians do not see people who are, or when they are, well. If I only see you when you are sick, I am going to assume that you are always sick. And if I work in a clinical setting, and therefore typically see people when they are sick, I am likely to draw the erroneous conclusion that the people I see are always sick. What I may not stop to consider is that I am not seeing people who are well because they are, in fact, doing well.
In less-ambiguous or better-understood illnesses, there may be no such illusion. For example, for a pediatric nurse practitioner in an endocrinology clinic, a reasonable assumption when she doesn't see a teenager in her clinic is that the teen is probably doing fine in managing his or her diabetes. When the teen gets sick, then she would see him or her, either in the clinic or in the hospital, but otherwise, odds are that things are basically okay. What has been different in psychiatry is the legacy of the 100-plus years previously noted, during which people diagnosed with serious mental illnesses were confined to institutions and assumed to be chronically and seriously ill, often for the remainder of their adult lives.
This 100-year period of institutionalization both gave birth to, and perpetuated, the belief that these conditions were permanently disabling. As it turns out, what was permanently disabling was being confined to an institution, not the conditions themselves (Davidson, Rakfeldt, & Strauss, 2010; Gullickson, 2004; World Health Organization, 2001). Since the end of that era, epidemiologic and longitudinal studies have found that many people do well over time, and that when they do well, they often see no reason to seek or use mental health services (Narrow et al., 2000). As a result, mental health professionals in fact do not see these people, at least not as patients in public sector settings. They do, of course, encounter people with mental health conditions all the time, in their families, in the grocery store or mall, at the Parent¬–Teacher Association or swim club meetings, at work and at social events, in their neighborhood, and at church, synagogue, or mosque. But since people do not introduce themselves as having a history of psychiatric disability, there is no way of knowing that history unless the person chooses to disclose it.
Some people respond to the explanation provided above by saying that their own experiences suggest a different picture, in which they encounter people who had dropped out of treatment but who were having even more difficulties than when they were in care, rather than fewer. They wonder about the people who they see on the streets, in homeless shelters, or in prisons, or who show up at a later time having experienced significant deterioration in both their mental and physical health; phenomena that appear to be more common, perhaps, in urban areas. Doesn't the presence of such people with serious mental illnesses who, by almost any criteria, are not recovering over time call into question the very notion of recovery? More succinctly stated: is the clinician's illusion really an illusion after all?
It unfortunately is true that most, if not all, of us have had such experiences of seeing people who are not in treatment and who are struggling with significant difficulties. It is a tragedy that there are any such people out there, but this is not only due to the severity of the mental illness. It also is due to multiple system failures and a cascade of harmful social determinants, such as poverty, unemployment, limited education, prejudice and stigma, poor health and lack of access to health care, and other social inequities.
There are, however, many more people out there doing well—but you would have no way of knowing who they are unless they told you about their experiences with illness. And since people are more likely to remember those people they see over and over again, they tend to generalize from those clients who may be having the most difficulty to all clients, past, present, and future. As a consequence, we assume that the folks who we see who are still struggling with significant difficulties are in the majority, while research suggests they are not.
So while the people we see on the streets, in homeless shelters, in prisons, or in hospitals are certainly there, they comprise "only" about one out of four or five of the people who have had the illness for that period of time. If you stop to consider how many people you typically will see over a 20-year career in mental health, and compare that to how many people you have seen who remained very sick for an extended period of time, you most likely will end up with around the same number. This number is, of course, not trivial (which is why we put quote marks around "only"), and the challenges faced by these individuals are not to be overlooked or trivialized. If anything, their presence should inspire us to redouble our efforts to promote recovery among all people affected by mental illness.
But the fact that one out of four or five people may experience significant distress and disability for an extended period of time with our current treatments does not justify rejecting the reality of recovery. Research shows that many of those deemed most profoundly disabled by the illness at any given time nonetheless recover fully at a later point, meaning that there is currently no way to predict who will recover, when, or to what degree. To treat any individual as if his or her fate were predetermined and hopeless based on a psychiatric diagnosis—as in any other chronic illness—is to limit the resources and imagination of both clinicians and clients. To apply this thinking to the entire range of people with the disorder also goes against the primary ethical responsibility of health care practitioners, to "first, do no harm."
The fact that 1 out of 4 or 5 people may experience significant distress and disability for an extended period of time with our current treatments does not justify rejecting the reality of recovery.
As a result of being underresourced and overworked—as well as having few, if any, opportunities to see people recovering and doing well—practitioners have been denuded of hope, as many clients have as well. Yet, as in many other serious health conditions (of which serious mental illness is one), a broad range of clinical outcomes is possible at any juncture. Despite the medical breakthroughs of the last half-century, for example, many people continue to die of cancer. This fact does not dissuade us from doing everything we can to ensure their access to effective care, to encourage quality in their lives, and to promote their recovery in the face of serious illness; neither should it do so when the illness in question is a mental illness.
Article on Clinician's Illusion:
P. Cohen & J. Cohen. (1984). The clinician's illusion. Archives of General Psychiatry, 41, 1178–82.
A selection of outcome studies from the past 30 years:
Ciompi, L. (1980). The natural history of schizophrenia in the long-term. British Journal of Psychiatry, 136, 413–20.
Harding, C.M.; Brooks, G.W.; Ashikaga, T.; Strauss, J.S.; & Brier, A. (1987). The Vermont Longitudinal Study of persons with severe mental illness, I: Methodology, study sample, and overall status 32 years later. American Journal of Psychiatry, 144, 718–26.
Harding, C.M.; Brooks, G.W.; Ashikaga, T.; Strauss, J.S.; & Brier, A. (1987). The Vermont Longitudinal Study of persons with severe mental illness, II: Long-term outcome of subjects who retrospectively Met DSM-III criteria for schizophrenia. American Journal of Psychiatry, 144, 727-735.
Strauss, J.S., & Carpenter, W.T., Jr. (1974). Characteristic symptoms and outcome in schizophrenia. Archives of General Psychiatry, 30, 429–34.
Strauss, J.S., & Carpenter, W.T., Jr. (1972). The prediction of outcome in schizophrenia I: Characteristics of outcome. Archives of General Psychiatry, 27, 739–46.
Strauss, J.S., & Carpenter, W.T., Jr. (1974). The prediction of outcome in schizophrenia II: Relationships between predictor and outcome variables. Archives of General Psychiatry, 31, 37–42.
Strauss, J.S., & Carpenter, W.T., Jr. (1977). Prediction of outcome in schizophrenia III: Five-year outcome and its predictors. Archives of General Psychiatry, 34, 158–63.
Strauss, J.S., & Carpenter W.T., Jr. (1991). The prediction of outcome in schizophrenia IV: Eleven-year follow-up of the Washington IPSS Cohort. Journal of Nervous and Mental Disease, 9, 517–25.
For further general reading:
Bleuler, M. (1978). The schizophrenic disorders: Long-term patient and family studies (Clemens, S.M., Trans.). New Haven, Conn.: Yale University Press.
Carpenter, W.T., Jr., & Kirkpatrick, B. (1988). The heterogeneity of the long-term course of schizophrenia. Schizophrenia Bulletin, 14, 645–52.
Ciompi, L. (1980). The natural history of schizophrenia in the long-term. British Journal of Psychiatry, 136, 413–20.
Davidson, L., & McGlashan, T.H. (1997). The varied outcomes of schizophrenia. Canadian Journal of Psychiatry, 42, 34–43.
Harding, C.M.; Zubin, J.; & Strauss, J.S. (1987). Chronicity in schizophrenia: Fact, partial fact, or artifact? Hospital & Community Psychiatry, 38, 477–86.
Lin, K. M., & Kleinman, A. M. (1988). Psychopathology and clinical course of schizophrenia: A cross-cultural perspective. Schizophrenia Bulletin, 14, 555–67.
McGlashan, T.H. (1988). A selective review of recent North American long-term follow-up studies of schizophrenia. Schizophrenia Bulletin, 14, 515–42.
Warner, R. (1985). Recovery from schizophrenia: Psychiatry and political economy. Boston, Mass.: Routledge & Kegan Paul.
World Health Organization. (2001). The world health report 2001. Mental health: New understanding, new hope. Geneva, Switzerland: World Health Organization.
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