Schizophrenia recovery: Time for optimism?
‘Recovery is not linear; you have ups and downs within your illness, but your overall trajectory is rising over time.’—Lisa Halpern
When Current Psychiatry Associate Editor Theo C. Manschreck invited Kenneth Duckworth to write a clinical review on schizophrenia recovery, Dr. Duckworth accepted—with 1 condition. He asked that Lisa Halpern and Laura Blockel, peer educators living in recovery with schizophrenia, be included as coauthors. Their contributions, he said, “will answer the question, ‘Can people recover from schizophrenia?’”
Dr. Duckworth, medical director of the National Alliance on Mental Illness (NAMI), says he does all of his professional writing with persons whom some advocates call “consumers” and whom psychiatrists usually call “patients.” Ms. Halpern and Ms. Blockel speak to community groups about their experience with schizophrenia and mentor others who share their diagnosis.
The result is this interview by Dr. Manschreck, accompanied by an audio file at CurrentPsychiatry.com. In that recording, Ms. Halpern describes her worsening schizophrenia while a student at Duke University and factors that helped her—and show evidence of helping others—achieve recovery.
Maintenance vs recovery
DR. MANSCHRECK: Maintenance and recovery are opposite models for conceptualizing the prognosis and treatment of patients with schizophrenia.
Maintenance—the more pessimistic model—assumes that the illness will worsen over time, so the goal of treatment is to achieve stability. Recovery—the more optimistic model—holds that schizophrenia can improve over time and sets the treatment goal as continued improvement above and beyond stability.1
Historically, Kraepelin had a pessimistic view. He believed schizophrenia usually leads to deterioration, although he wrote that some individuals recovered or improved.2 Bleuler—who coined the term schizophrenia—had a broader concept of the illness and talked about observing social recovery fairly often in his practice in Zurich.3
DR. DUCKWORTH: I graduated from a Harvard psychiatry residency in 1991, which isn’t very long ago. Even then I was taught that as a therapist you could make a big difference in the short term, but people with schizophrenia didn’t get better over the long term.
In 1987, the 32-year Vermont State Hospital longitudinal study by Courtenay Harding and colleagues demonstrated that one-half to two-thirds of 262 patients who met DSM-III criteria for schizophrenia at their index hospitalization improved considerably or achieved remission over long-term follow-up. All of the patients had participated in a comprehensive rehabilitation program before deinstitutionalization in the 1950s.4,5
Since then, there has been a transformation in how people conceptualize schizophrenia, from therapeutic pessimism to hope of recovery. But recovery is not embraced everywhere, and mental health practices and policies block access to treatment and support services for many people with schizophrenia.
What does ‘recovery’ mean?
DR. MANSCHRECK: Researchers at the UCLA Neuropsychiatric Institute, including Robert Liberman and Alex Kopelowicz, proposed a definition of schizophrenia recovery that includes sustaining 4 benchmarks for a least 2 consecutive years:
- working or going to school full- or part-time
- living independently without the need for supervision
- not depending entirely on disability insurance for financial support
- sharing activities with friends on a regular basis.
These criteria were validated in a pilot study of 23 persons considered to have recovered from schizophrenia.6 To standardize clinical trials, Andreasen and colleagues developed remission criteria for schizophrenia based on items in the Positive and Negative Syndrome Scale (PANSS) (see Related Resources).
MS. HALPERN: To me, recovery is the somewhat amorphous principle that life is possible despite serious mental illness. You can live with your illness, and recovery is a way of reclaiming life.
Recovery is not linear but like the stock market, the S&P 500. You have ups and downs within your illness, but your overall trajectory is rising over time. That’s a model that speaks to hope and shapes and frames who you are.
MS. BLOCKEL: Dr. Bill Hettler, president of the National Wellness Institute, wrote that hope drives the pursuit of health. Instead of looking at recovery as relapse prevention, I see it as an active process of setting goals and working toward them. Those goals will differ from person to person but are measurable within their own paradigm.
DR. DUCKWORTH: My guess is everyone has a definition of recovery; I think of it as a subjective experience of putting a life together for oneself. A person can have an illness and still be dealing with the illness while in recovery.
I don’t equate recovery with symptom remission. A person can be dying of cancer and recovering from the illness at the same time in terms of their spiritual life, their emotional life, and their psychological well-being. NAMI has been championing the movement to measure recovery, but it’s challenging to measure these subjective things.
Laura Blockel: Stress triggered voices, hallucinations
I was 19 years old and a junior at Williams College. I had been under a lot of stress that year. My parents had gotten divorced, and both moved away; I had very little contact with them.
My fiancé left for England, and I had a demanding thesis that wasn’t working out well. I had lost a fair amount of friends.
I became very depressed and began to hear voices, which sounded at first like a radio but became more intrusive. I also was having olfactory hallucinations, where I imagined people could smell me from yards and yards away. I began to isolate in my office, sealing up the windows and doors so my smell wouldn’t leak out. I lost all interest in social contacts and was sporadically attending class. After my senior year I moved to Denver, where I was homeless for a time before I barely maintained a job for 3 to 4 years.
Remission, then relapse. Then I enjoyed a remission for 10 years, when my symptoms were minimal. I was able to get a high-functioning job as a buyer for a major retail corporation. I got married and had two wonderful children. My symptoms returned during my second pregnancy, and they were as bad as they had been in college. I was referred to a psychologist, who quickly diagnosed me for the first time with schizophrenia. He referred me to a psychiatrist 2 months into treatment.
My psychiatrist worked with me through 6 years of trial and error; some things worked, some things worked for a while and then didn’t work anymore. But he never gave up on me; he saw me weekly and worked hard to understand the role that stress and environmental factors played in my symptoms. I struggled with being in and out of hospitals and the severity of my symptoms. My husband divorced me, I lost my job, and almost lost my house.
The turning point was when my medications became not only stabilizing but energizing, and I suddenly had more ability to face everyday tasks. I was able to maintain my house and take good care of my children. And then, with the stability from my medications, I was able to build upon that and I now have a job with NAMI. My hospitalizations decreased from 4 to 5 times a year, and I haven’t been in for a year and a half. I’m taking Effexor (venlafaxine), Trileptal (oxcarbazepine), Zyprexa (olanzapine), and Ambien (zolpidem).
I have symptoms almost daily, but they’re minor and I’ve learned by working with my psychiatrist to continue through them. We talk about my symptoms, but treatment is based more on what potentials I have. How can I advance to the next level? What can he do to make things possible?
Hope for the future. Someday I hope to be employed full-time. I hope to see my children graduate from college. I hope to make friends, maybe find a significant other. But the steps in between those goals are broken down into smaller steps.
For many years I had a very stable treatment team. My therapist and psychiatrist chatted regularly. My rehab counselor also worked with my psychiatrist. I think that was the most important factor in my recovery.
What factors influence recovery?
DR. MANSCHRECK: In their pilot study of 23 recovered schizophrenia patients, Liberman et al6 identified 10 factors that appear to influence recovery: family relationships, substance abuse, duration of untreated psychosis, initial response to medication, adherence to treatment, supportive therapeutic relationships, cognitive abilities, social skills, personal history, and access to care.
MS. BLOCKEL: Fortunately I was employed and had access to health care when I become ill. But what really made the difference was skilled case management between my psychiatrist of 13 years and my psychologist of 10 years. They had good coordination between the two services and were always checking with each other on my progress. My psychologist also navigated with my private insurer to get me approved for visits and things.
DR. DUCKWORTH: Were their relationships with you also healing?
MS. BLOCKEL: Definitely. They were supportive, very recovery-minded. There came a time in my care when I had to go on disability, and giving up my job was a terrible blow to my self-esteem. I received a commitment from my treatment team that someday I would be well enough to hold a job again. And we did achieve that goal because of our commitment to getting me where I wanted to see myself in the future (Box 1).
MS. HALPERN: I also have been blessed, I believe, by other people’s high expectations. At my sickest time, I was on a 1-year medical leave from Harvard graduate school, I could not read nor write, and my IQ was 70. But my doctor believed that in 3 months I was going back to school. I thought it was laughable, but it’s incredibly powerful to have somebody set the bar high and say, “We will do this together” (Box 2).
My doctor also is very aggressive with medication. I was doing well on a cocktail of psychotropic medications, but my mind was playing some tricks with me. I was having some tough auditory and visual hallucinations—things that I could deal with—but my doctor was willing to take the risk of putting me on a different medication. That’s how I ended back on clozapine, and it’s been a miraculous journey.
DR. MANSCHRECK: Would you give us an example of what you meant by “aggressive treatment” by your psychiatrist?
MS. HALPERN: My doctor is aggressive in a positive way. When I first got to know him, I had been seeing another doctor who thought I had bipolar disorder. I was on a huge number of medications but nothing was working. I was very, very ill and kept fainting from the toxicity.
So my psychiatrist decided to take me off all my medications and tease apart what made me Lisa. I quickly deteriorated and was hospitalized in March and June 1999, but both times were short. I was diagnosed with schizophrenia and started on clozapine in June 1999, 6 months from the first day I saw my psychiatrist.
Having gone to Duke University, I’m a big fan of Duke basketball. I often heard “Coach K” (Mike Krzyzewski) say with regard to a championship, “We don’t defend, we pursue.” And that’s what I think of my doctor. He’s always looking for what’s next in the pipeline. Is something coming out that’s like clozapine but without all the horrible side effects? He’s always looking out for the next best thing for me.
Medications and recovery
DR. DUCKWORTH: Medicines can provide the foundation of symptom relief on which recovery is built. Clozapine is not magic, but a good database suggests impressive results in symptom remission and reduction in suicidal impulses, substance abuse cravings, and aggression.
Clozapine is an aggressive treatment, but relatively few individuals have a full trial of this medicine. It’s difficult to take and medically complicated. I refer to it as “psychiatric chemotherapy” when I talk to people with schizophrenia for whom I’m prescribing it. The fact that so few persons receive clozapine shows me that psychiatrists still have an internalized sense of therapeutic pessimism (perhaps medical-legal anxiety) about giving a complicated medicine.