My Own Experience Learning about Recovery
From early in 1990 until 2002 I served as Deputy Chief Medical Officer (=Deputy Medical Director) of the New York State Office of Mental Health (NYS-OMH). From 2002 until the end of 2004 I served as Chief Medical Officer (Acting) for NYS-OMH.
During those 15 years I was invited to consult on hospitalized patients throughout our system. That was a learning experience for me, because it taught me about the limits of what hospital treatment could accomplish. Gradually, I came to see that those limits included the remediation or at least suppression of symptoms but not recovery itself.
As the patients told me, recovery could only flourish where they had the autonomy to pursue their own goals, that is, when living independently in their home communities. I began to encourage my psychiatric colleagues to consider discharge earlier, even if some symptoms remained, so that recovery could begin. When they countered that some symptoms persisted, I had little further to offer, because I did not know, myself, whether greater autonomy would lead to recovery, never having participated in settings where that process could unfold.
So, to find out, within a few months of retiring from NYS-OMH I took a position as team psychiatrist for a not-for-profit organization that provided standard apartment housing and ACT (assertive community treatment=outreach + engagement) services. My book about what I learned there, “Narratives of Recovery from Serious Mental Illness,” will be published by Springer, late this summer or in early fall.
It details the process of recovery for a dozen individuals whom I treated and who effectively shared their lives with me for periods of three to six years. Each of these narratives, as you would expect, is unique, and each reflects the hopes and wishes of the individuals themselves. Each of them worked hard to figure out the way forward. I hope my readers will find these examples familiar and, more than that, convincing and encouraging.
The Facts about Recovery
1) In his classic text on schizophrenia (1911) Eugen Bleuler noted, in his chapter on “The Course of the Illness,” that, among those discharged from his hospital, even though on careful examination he could always detect some residual symptom of the illness, “the majority of the released individuals are employed or employable.” His son who followed him as superintendent noted in his 1980 article that it was because his father went to a little clinic every summer and saw a few of his old patients not fully recovered that he became more pessimistic. His son however went on to do a 2 decade study and followed his subjects into the community and found a different picture: 62-68% had gotten their lives back
2) Half a century later (1962- really 1961) George Brooks, Superintendent of the Vermont State Hospital, carried out a plan of discharging all patients hospitalized for an average of 10 years to participate in the pioneering rehabilitation program in the community. He offered rehabilitation housing for 2 years, job training, placement and after job supports social opportunities, and noted that they blended into their local communities, supported themselves financially, and got whatever medications they needed from general-practice physicians; few ever returned to the hospital.
3) Courtenay Harding began, an average of 25 years after their rehabilitation program, to study these discharged people more carefully. In the American Journal of Psychiatry (1987), she established that two thirds were indeed living independent and stable lives.
The Assumptions that Lead to Doubt about Recovery
1) Schizophrenia is a progressively deteriorating condition, a form of “early dementia,” as described by the so-called “father of modern psychiatry,” Emil Kraepelin (1895). It is characterized by successive psychotic episodes, each one leaving the sufferer with further diminished capacity and has always been part of the DSMs that reflect and train American psychiatry.
2) Anti-psychotic medications can reduce the intensity of the psychotic symptoms, such as hallucinations and delusions for some acute patients and therefore it has been assumed that all patients need them and need them for the rest of their lives. The goal was to make patients more manageable or more comfortable, but they do not alter the course of the condition. Furthermore, because of their adverse side-effects or out of general non-compliance, patients routinely discontinue them (1970’s-present).
3) Because of the gaps in our systems of care, though, many discharged patients may wind up homeless and unprotected. This situation makes them subject to abuse and physical deterioration, and they depend on expensive emergency services and repeated hospitalizations. All of this is costly to society. If they are discharged to shelters or group homes, they wind up spending their days abusing various substances or watching TV, and they rarely emerge to participate in any meaningful relationships or community activities (1990’s-present).
How to reconcile these two perspectives
1) Though Bleuler provides no data, it would be interesting to speculate on the reasons some of his patients were able to proceed to discharge, even in an era when community services were unavailable. Did they have unique characterological strengths, such as resilience and determination, or special intellectual gifts or skills, which would have increased their employability? Did they have capable families, who supported their efforts toward independence? It is safe to speculate that in those early days, there were no advocacy organizations to provide the needed encouragement and resources. Finally, the distinction between “cure” and “recovery” was not initially apparent: today, people who are “employed or employable” could well be considered “recovered,” even if they continue to manage residual symptoms and are thus not “cured.” Unfortunately, Bleuler’s observation about this outcome was never handed down through generations of mental health professionals. Today, we might well consider such an outcome a likely indicator of recovery. Recovery has many definitions. Harding et al had the most stringent: no more symptoms no odd behaviors, living in the community, working and relating well to others. A residual symptom was considered to put the person in the “significantly improved group”. No one has ever used the word “cure” because as most family physicians will tell you, there are only a few cures in medicine: a few surgeries and antibiotics. They perceive that the person and his or her own body to “heal” themselves and indeed the neurophysiologists (even Nancy Andreasen) are talking about neuroplasticity in which the brain reorders itself.
2) The role of anti-psychotic and mood-stabilizing medications is quite complex and has a checkered history, to say the least. They can be a useful adjunct to recovery, producing benefits from the mild to the dramatic, even though they do not, in themselves, change the course of the illness. A fundamental principal is that each person’s response to them is unique; individual variation is the rule, not the exception; therefore, a cost/benefit analysis is essential in each case. It is hard to find someone with serious mental illness who has not ever benefited from any of them at any time in her/his life, though that does not mean that they are always needed or need to be taken indefinitely: the patient’s reasons for taking or discontinuing any of them at any time is invariably relevant. The existing problems is that we have not done enough research to be able to triage who needs them for a short while; who needs them for a long while (and if so how long) and who doesn’t need them at all.
3) While it is true that most people coming out of correctional or psychiatric institutions, or from chronic homelessness, have not developed the routines required for clinic attendance or regular visits to physicians, the so-called “revolving door syndrome” is not inevitable. It can be avoided by the introduction of outreach psychiatry. The effectiveness and efficiency of outreach have long since been demonstrated. The problem that remains with outreach is that its capacity, in terms of numbers of slots, remains limited to numbers far below what are required. This is especially true in view of the efforts of state psychiatric and prison authorities to downsize even more. It would be comforting to suppose that the downsizing was prompted out of humane concerns for dignity and personal choice, but other motivations would likely include the pressure of the Community Mental Health Law in 1963 in a civil rights action because of no treatment available in institutions, the Public Law 99-660 introduced in 1986 demanding that people actually receive treatment by community mental health centers and not just get dumped out, and the Olmstead Law, introduced in 1999 and mandating treatment in the least restrictive setting necessary. Fiscal considerations have always found that institutional care is just too expensive.
The Way Forward
My interest is in learning how all the factors come together to promote recovery: personal strengths, family support, advocacy groups, and resources provided by makers of public policy. We are reaching an inflection point, where it may be possible to convince even the public at large what many have long known, namely, that serious mental illness does not preclude individuals from living independent and satisfying lives.
William Tucker, MD, is Clinical Professor of Psychiatry at the Columbia College of Physicians & Surgeons. He has been a director of residency training in psychiatry and subsequently, Medical Director (acting) of the New York State Office of Mental Health. He was an outreach psychiatrist at Pathways to Housing, in Queens, New York. He has long been interested in literary short stories that can be used to show healthcare professionals and others how people in the real world can develop new capacities to take charge of illnesses and other complex challenges in their lives, and he wrote a book about it, How People Change: the Short Story as Case History (The Other Press, New York, 2007). This spring he published a second book, Narratives of Recovery from Serious Mental Illness (Springer International, 2016) detailing his experiences as an outreach psychiatrist for Pathways.