An Empowerment Model of Recovery From Severe Mental Illness
An Expert Interview With Daniel B. Fisher, MD, PhD
Posted 01/20/2005
Editor's Note:
What is an empowerment model of recovery? How is it useful, perhaps
invaluable, in the daily practice of psychiatry? What data support it? To
get to the core of these issues, Randall White, MD, interviewed Daniel B.
Fisher, MD, PhD, Executive Director of the National Empowerment Center in
Lawrence, Massachusetts.
Medscape: In your publication "Personal Assistance in Community Existence: A
Recovery Guide," you write that the recovery model emphasizes that emotional
distress is a temporary disruption in life.[1] Can you elaborate?
Dr. Fisher: Our description of mental illness is a combination of severe
emotional distress and an interruption of a person's place in the community
and social role -- being a worker, parent, student, a participant in overall
community life -- which is not dissimilar from what is considered a mental
disorder in DSM-IV.[2] The most important finding in our research is that
people who have shown significant or complete recovery from severe mental
illness -- by that I mean schizophrenia, bipolar disorder, or
schizoaffective disorder -- have cited hope as an extraordinarily important
component in their recovery. Part of the recovery was being around people
who saw their condition as not permanent, a condition from which they could
take increasing control of their life and reestablish a place in society.
Medscape: You also write, "It is much more difficult to recover once a
person is labeled mentally ill." How have you found that to be true?
Dr. Fisher: If people don't have the internal capacity, and the severity of
their distress is too overwhelming, and they don't have the finances, the
education, the social surroundings, and family to help them, they end up
with the label of mental illness. The severity becomes greater because, in
addition to having to recover from the severe distress that interrupted
their capacity, they also have to recover from the role of being mentally
ill.
The biggest example of that is Social Security; another is the loss of
rights and the trauma that often occur in being hospitalized. For many
people, it's very traumatic being hospitalized.
Medscape: Can you talk some more about Social Security?
Dr. Fisher: If you don't have the resources, or if the duration of distress
lasts too great a time, a person needs to be on Social Security. I've been
on the psychiatrist's side of that and I know that, unless someone is able
to get a job that pays up to $16 per hour and has full benefits, it's very
hard to duplicate the benefits. I've worked with legislators on the Ticket
to Work legislation to try to correct some of the shortcomings of Social
Security, one of the biggest being you're either on it or off it.[3] Once
you have been on it, there's great fear of going off it because you might
not get back on.
Medscape: Your publications make reference to the difference in outcome of
schizophrenia in less-developed societies compared with industrialized
societies. What does the research indicate?
Dr. Fisher: The evidence is from 2 studies by the World Health Organization
(WHO), one in 1979 and the second in 1992, comparing the recovery rate,
mostly from schizophrenia, in developing countries with the recovery rate in
industrialized countries. In 1979, WHO had about 1800 cases validated by
Western diagnostic criteria in developing counties matched with controls
from industrialized countries, and they found that the recovery rate was
roughly twice as high in the developing countries compared with the
industrialized.[4] They were so surprised by this that they said, "Well,
this must be a big mistake." So they repeated the study in 1992, and they
got the same results.[5]
Medscape: How do you interpret this and what are the implications for us as
psychiatrists in industrialized societies?
Dr. Fisher: The implications are profound. It shows that schizophrenia is
more pronounced and prolonged in industrialized countries. I've started to
gather information from developing countries about how they approach
treatment and healing. They have a completely opposite approach from Western
countries. They're very socially oriented, and they instinctively recognize
the importance of keeping people connected to the community. We have
ceremonies of segregation and isolation, which is really what our labeling
and our hospitalization process is. They have ceremonies of reintegration
and connection.
Medscape: Can you contrast the medical model with your empowerment model in
the approach to psychosis?
Dr. Fisher: The first contrast is that we say to the people going through
the experience that this is not a permanent condition and that other people
have recovered. We try to expose them to people who have recovered and who
can be role models. When I'm working with people who are undergoing
psychosis or long-term severe mental illness, I share some of my own
experience with them and how I too at times heard voices and had the
television talk to me.
The second part is that we help them understand that these symptoms are
expressions of distress over their lack of a connection on a deep emotional
level to the people around them, that they involve loss and trauma and
interruption in social development. We go through with them a set of 10
principles of recovery that we have established through our research, which
is the qualitative study of people who have shown complete recovery from
severe mental illness, mostly schizophrenia.
Through this model we emphasize the reestablishment of personal connections.
It's often peers who are the most significant guides for recovery. This is
because, if you've been through the experience yourself, you're often able
to connect with another person in a verbal and especially a nonverbal
fashion that is hard for people to do who have not been through the same
experience. That connection is vital to people's recovery.
Medscape: This reminds me of the recovery model of addiction.
Dr. Fisher: We certainly see some similarities to the addiction field. In
the addiction field, a person's first-hand experience with addiction is
valued; whereas in the mental health field, it's only now starting to be
valued. Until fairly recently it was something you didn't talk about. Part
of the recovery is society's recovery from placing so much discrimination
and stigma on the person who's been labeled with mental illness. It's hard
to recruit peers as long as the stigma is so great; people don't want to
step back into the system.
I went through this. It was hard for me to disclose. I waited until after my
residency, but this is the major resource for the empowerment model --
finding and training people who have shown significant recovery, who can
come back and help other people and train other providers, too.
Groups are an important modality in this model because they enable people to
share their experiences and see that they're not alone. I do a weekly
recovery group at a day program, and what I try to do is put into lay terms
what's been learned over the last 50 years about what helps people
psychologically in their recovery. In psychoanalysis they've developed a lot
of understanding; Carl Rogers did some very good work, as did Harry Stack
Sullivan. So in some ways, the empowerment model of recovery is drawing on
earlier knowledge of working with people interpersonally rather than
exclusively medically.
Medscape: What is the role of medication in your model?
Dr. Fisher: Ideally we would like to see settings provided -- Soteria House
you may have heard of -- where people can go when they need more intensive
social supports.[6] We expect that if there were more of these settings,
there would not be as much need for medication. The need for medication I
tend to see as a failure of the person's world and their own internal
resources to sustain emotional equilibrium sufficiently to remain in
consensual reality, and I don't know whether it's one or another
neurotransmitter, but clearly when people are feeling very frightened or
confused, it's hard for them to be reached by another person. During those
times I do prescribe medication and say, "This is to help you to gain
control of yourself and your life. Hopefully, you won't have to take it for
a lifetime."
I think it's very important that people hear that it's to be used as a tool.
I always point everything toward how can you learn to be with other people,
to make friends, to get a job, to go back to school, and to perform adequate
self-care. Because if you don't, and I'm afraid I see this a lot of times
the way medication is used today, people start to believe that the
medication will solve their problems, and that's a kind of magical thinking.
And it takes away responsibility, motivation, initiative.
I think that ultimately psychiatrists need to hear that a recovery approach
is going to assist them in their practice. We're often asked, "Doesn't an
empowerment approach increase risk? If people make their own decisions,
doesn't that increase the risk involved in practicing psychiatry?"
Medscape: You mean medicolegal risk?
Dr. Fisher: Yes, medicolegal risk, and the position that I take in my own
practice is that the recovery approach is really a risk-reduction approach,
because the biggest risk is a rupture of communication between the person
receiving services and the person providing. Most lawsuits are the result of
bad feelings and poor communication much more than bad outcomes;
furthermore, if people lose communication with their caregiver, they're not
going to say when they are not taking medication, that they're feeling
suicidal, or that they're thinking about hurting somebody.
Medscape: You write that psychotic symptoms may persist after recovery but
"those are no longer symptoms of mental illness." How so?
Dr. Fisher: I'll give you an example from my own life. I've developed, for
instance, ways of talking myself through frightening periods in ways that
normalize them to me. I might, at times, if I'm driving along and see a
police car, think, "I wonder if they're following me." Then I'll just think
it through -- "Why would they be following me?"
Medscape: What you're describing is cognitive therapy.
Dr. Fisher: Yes, it is in a way, but it's actually what I think people who
are not labeled mentally ill instinctively know how to do. We all are
confronted at various times in our life with potentially psychotic thoughts.
It's just unavoidable. If you're in a new situation and you're uncertain
about things, and you can't quite identify the people around you, you can
have a misperception. But the difference between misperception and delusion
is how you think about it.
Medscape: Would you say that this kind of cognitive-therapy approach is a
part of your model?
Dr. Fisher: It is, actually. In fact, part 2 of our PACE [Personal
Assistance through Community Existence] program is a cognitive model.[7]
We've taken 10 of the major principles of recovery and framed them within a
cognitive-behavioral approach.
For instance, a misapprehension might initially be, "I have a permanent
condition and I'll never recover from it." Having another person around you
who can help you understand through their life that other people have been
through it and you're not alone plays a huge role in shifting that
misperception to a new understanding.
Medscape: Can you briefly describe your personal journey to doing the work
that you're doing?
Dr. Fisher: It's a very significant part of my reason for becoming a
psychiatrist -- wanting to bring to the field what I wish had been there
when I was going through my psychosis. I very clearly remember thinking,
during my second hospitalization, "If the people who are talking to me had
only been where I am right now, they'd know the way to communicate with me
so that I would feel once again part of the world around me." I also hoped
there'd be a way to be helped short of having to be involuntarily
hospitalized, which I went through 3 times.
In my second hospitalization, I decided that I would become a psychiatrist
and try to change the way mental health is provided. I was lucky -- I was
able to find a psychiatrist who was able to provide me with many of the
principles we find have worked in recovery. He believed in me. When I told
him, several months after coming out of the hospital the second time with a
diagnosis of schizophrenia, that I wanted to go to medical school and become
a psychiatrist, he said he would be at my medical school graduation. And
about 7 years later, he was there.
My life's work is here at the National Empowerment Center, which I helped
start 13 years ago, and that resulted in my being a member of the
President's New Freedom Commission on Mental Health. I think I played a
significant role in getting "recovery" into the national lexicon by my role
there. I see my role as a bridge between the consumer movement and the rest
of the mental health system. Through my credibility in both worlds, I've
been able to help each world understand the other.
Daniel B. Fisher, MD, PhD, Executive Director, National Empowerment Center,
Lawrence, Massachusetts, d.fisher@power2u.org; psychiatrist, Riverside
Community Mental Health, Wakefield, Massachusetts
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