Long ago [in the late 1970s or early 1980s sometime], a friend invited a psychiatrist who was in town to come to a journal club he chaired. The visitor was a psychiatrist/psychoanalyst who had retired from an interesting career. For years, he’d directed a public mental health center in the mornings, and then gone to his private practice in the afternoons. He was one of the early describers of "burn-out," that thing that happens to mental health personnel after working with chronic patients for too long. His topic that evening was one of his books on Schizophrenia [that he was in town to promote]. His name was Werner Mendel. He was a very personable, happy guy [with a natty bow tie] who spent his retirement sailing and writing about his time in grade. He told us about some things that have always stuck with me.
I was interested in "burn-out." I’d spent a lot of time with staff in Mental Health Centers and the Crisis Unit I was in charge of at the time, and I’d seen a lot of that. Essentially, he described something of a developmental crisis in his mental health staff. It happened at around six or seven years, when a staff member would go a little crazy – get depressed, get hostile to the boss, colleagues, or patients, any number of uncharacteristic things for that person. His explanation was simple. Success in a facility with chronic psychotic patients was not measured in their getting better, it was measured in their not deteriorating. He said he realized that he didn’t get "burned out" because his afternoon patients actually got better and said "thanks" when they moved on. His nurses across town didn’t have that luxury. Instead of getting frustrated with them when they "burned out," he had come to see as part of his job helping them move forward. Some moved "up," became administrative with less patient responsibilities; some came through it rededicated to helping chronic patients, but with new set of expectations; and some changed professions altogether. Whichever happened [speaking of Memorial Day], he thanked them "for their service." Quite something, Werner Mendel.
The analogy to "combat fatigue" was apt, and helpful to me personally. From that meeting, I recognized that I was having some "burn-out" of my own. Instead of feeling guilty and trying to over-ride it, his talk helped me to think about my own feelings more clearly. But the reason I’m bringing him up was something else he said, almost as an aside. I’ll paraphrase as best I can:
"You know, as I talk about it, I’m realizing that those clinic patients did better than the staff. Schizophrenic patients get better with age. I don’t know why, but there’s no question about it. Maybe it’s fueled by the passion of youth? hormones? Whatever the case, I was around for a long time, and the old patients would come in and I was amazed at how much better they were. Amazed! They outlasted my staff."
And now I’m old too, and I would say the same thing. I wasn’t in a mental health center for all those years, but I was around where I’d met many patients along the way, and ran into them much later in a variety of settings. Dr. Mendel was absolutely correct. They weren’t "well," but considering where they started, it really was amazing [and I saw it enough to claim it as nearly an evidence-based observation].
Speaking of people along the way, Sandy Steingard of
Mad in America brought up something old too in her
comment to my last post:
I find it fascinating to know that the innovative rehab program introduced by George Brooks at Vermont State Hospital in the 1950′s, which was the basis of Courtenay Harding’s ground breaking long term study in the 80′s [2/3′s living full lives in the community, 50% on no medications, another 25% using them intermittently], was predicated on a non-hierarchical approach. Brooks brought in the patients and asked them what THEY needed in order to be able to be well enough to leave the hospital.
I haven’t located anything that I can read from Dr. Brooks, but Courtney Harding’s 1987 papers
are both fully available on the Internet and worth a read by anyone remotely interested in psychotic illness. They describe the outcome much as Sandra reports it. These were back ward patients moved from the State Hospital into the community in 1955 [before deinstitutionalization was "cool"]. George Brooks had done a 5-10 year follow-up study. From the first Harding paper:
Thus, 5-10 years after release from the rehabilitation program, 70% of the patients were out of the hospital, which was considered remarkable at the time because they had been expected to live out their lives in the hospital. However, the study concluded with a warning:
Implicit in our findings is the fact that any plan for rehabilitation of the chronic patient be conceived as long-term, since all of our evidence suggests that the commitment necessary to the chronic mental patient has no foreseeable end, and that unless constant attention be given to the chronic patient, the end result may be simply that he is out of the hospital, but operating at a high level of inadequacy and a low level of employment.
It is at this point that most follow-up studies stop and most programs are discontinued. Thus, most of our understanding of the long-term outcome for severe mental disorder is derived from such shorter-term data. The question asked in the present study was, Do these patients still continue to display such impairment and disabilities 20 to 25 years later, as predicted earlier by our own research team?
At a mean follow-up time in Harding’s study of 32 years, they were probably doing even better. As a matter of fact, read them even if you’re not interested in psychotic illness. They’re just a good read – at least the first one. But there’s one particular comment I want to mention. Harding realized that it’s an uncontrolled study. And she mentioned trying to do something about that:
… There were no subjects who could become a control group in the Vermont State Hospital, inasmuch as the entire most severely ill third of the patients in the state’s only hospital [excluding the geriatric population] was selected to participate in the program. For years an appropriate comparison sample was sought, and recently a study was undertaken in the state of Maine that matched each of the Vermont study’s subjects by age, sex, diagnosis, and level of chroniciry with a patient from the Augusta Mental Health Institute. These new subjects are being interviewed with the same protocols and instruments to determine their life courses and illness trajectories. The primary difference between the two samples is the presence or absence of rehabilitation efforts. It is hoped that the difference in outcome between rehabilitated and nonrehabilitated subjects will be helpful in the study of mediating factors in long-term course.
That’s an important point. Because the question is were those good results in Vermont a function of their rehab efforts, or that Schizophrenic patients get better with age. Is our job rehabilitation, recovery, and resilience? fixing something? Or is our job to do what Dr. Mendel’s staff did ]until "burning out"] – keeping them from deteriorating by providing support services, treatment for exacerbations, and protecting them from suicide, prison, or the dire complications of too much medication? waiting for a better time that was likely down the road? I expect the answer varies from patient to patient and day to day. But we just don’t know right now. And then the computer went "ping," and I had the references for the Maine part of the study [1995] – coming soon to a blog near you…
Ben Goldacre on David Healy’s blog this afternoon. Wow.