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Taking Aim Together
By Chris Martell
Reprinted with permission from Schizophrenia Digest, Spring 2005
When problems in the body arise there is, in one corner, a doctor in a starched lab coat, bolstered by academic credentials and the medical community. In the other corner is the patient, naked beneath a paper gown, feeling vulnerable as he or she is poked, prodded and examined.
When illness involves the brain, the dynamics between physician and patient become even more complex. A person’s most private thoughts, beliefs and life goals are being scrutinized, and ultimately judged, by a psychiatrist. With a prescription pad, the doctor can try to rewrite the script in their patient’s mind and-while they’re at it-bring on a cornucopia of side effects that may change the patient’s life just as profoundly.
The lack of balance in the doctor-patient relationship is particularly acute in schizophrenia, often characterized by a consumer’s lack of insight into his or her condition.
For a decade, there has been growing dialogue in the psychiatric community about the role of doctors in the treatment of schizophrenia, much of it led by Dr. Ronald Diamond, a psychiatrist at the University of Wisconsin-Madison, who also works with patients living in the community.
"We are still not doing a very good job of listening to patients," Dr. Diamond has said, echoing a warning he’s been sounding for years. "The treatment of schizophrenia could be greatly improved if physicians better understood the goals of their patients."
The fundamental question is this: Are doctors inflicting their own goals on their patients, or are they helping their patients lead the kind of lives they really want?
That question was addressed in a recently published study, commissioned by Janssen Pharmaceutica Products and co-authored by Dr. Diamond, in which psychiatrists and people with schizophrenia were asked to rank their treatment goals.
The 199 consumers surveyed and the 291 doctors who participated have many of the same broad goals: improved overall happiness and mental health are at the top of the list of shared goals.
Other similar rankings between patients and doctors included improved ability to express oneself to others, reduced depressive thoughts, improved family relationships, less agitation and irritability, fewer suspicious thoughts about others, less dependency on others, fewer sexual side effects and less frequent visits to the psychiatrist or counselor.
But the study also highlighted some differences between the goals of physicians and patients. Doctors valued minimizing the side effects of medication more highly than the patients did. And patients cared more about social activities than the doctors did.
The survey revealed that physicians have higher treatment goals than their patients. It suggests that patients may not have high hopes for the success of their treatment, and are not freely discussing their own unmet treatment goals with their doctors. Because of the survey’s findings, physicians are urged to discuss treatment goals and progress toward these goals with individual patients in order to increase their satisfaction.
"In the past, we assumed that patients agreed with our ideas of reasonable treatment," Dr. Diamond said. "But more and more, I think we are starting to listen to what our patients want in a different way."
AVOIDING THE RACE
It took five hospitalizations in as many years and an arrest before Dylan Abraham’s condition stabilized enough for treatment to take hold.
When he was diagnosed in 1974, the idea of schizophrenia being a brain disease rather than a behavior problem was still in its infancy. His doctors still adhered to Freudian theory, and peppered him with questions about his feelings.
"After three days in an interrogation room when I was in jail, I couldn’t handle any more questions, so there was friction with the doctors," he recalled. Family therapy also failed.
"My parents were divorced, so there was tension. And my father didn’t understand anything about mental illness. It was stressful, and it made things worse.
"A lot of people were still thinking that bad parenting caused schizophrenia. I was aware that my mother was being accused of being a ‘schizo-genic-frenic’ mother. A lot of women in the ’60s and ’70s were getting slammed with that label, and that was very upsetting to me. Why would a mother try to make her own child sick?"
There were bright spots as well." Some of my happiest memories are from the (psych ward) at Madison General. I was 18, and the staff was young and idealistic. I could relate to them much better than I could to the older doctors. One of the guys on the staff, who was about 25, acted like my big brother. … The young people on the staff were listening to the same music I was. They were treating me like a person, and the older doctors weren’t."
After 10 weeks of medication and the sanctuary of the psych ward, Abraham’s doctors pronounced him cured and took him off medication." My doctor was adamant that I go to college full-time and move into a dorm."
At first, Dylan pulled straight A’s at the University of Wisconsin, while taking part in martial arts and sports. Near the end of the semester, though, "everything fell apart," he said. The chorus of well-intentioned people insisting he make a beeline from psych ward to college didn’t help either, he now believes.
"There were too many cooks in the kitchen, getting on my case and telling me what to do. I was only 20 and I wanted to take my time, and do what I pleased. What was the rush? Getting well is not a race. But it had become a race. The doctors felt I had to get fixed as fast as possible."
In time, things fell into place. Dylan has traveled internationally, doing public speaking and writing on mental illness, often with his mother, Nancy, who was one of the founding members of the National Alliance for the Mentally Ill. He works in crisis intervention at a mental health center, helping other consumers. And he has, since he was in his 20s, been part of a community support team called PACT.
"It’s like a 24-hour-a-day, 365-daysa- year psych ward, without walls," said Dylan, who now lives in a condo he owns and has not been hospitalized in 18 years. "(PACT) knows everything that’s going on with me, even if I have the flu, which can trigger symptoms."
He attributes much of his success to a psychiatrist who has an excellent understanding of psychoactive medicine, and changes prescriptions quickly if he notices something going wrong.
"He picks up problems before they get big," Dylan said." He compliments me on my successes. He told me he likes the way I never complain about my clients at work, and he admires my consistent, structured routines. He’ll say things like, ‘This is the best I’ve seen you look in a while.’ He listens to what I say, and he knows what I want to do with my life, which is to help end the stigma of mental illness. He treats me like a friend."
At age 48, following three decades of battling schizophrenia, Bruce Maybee still has the aspirations of a young man.
"Since I was in my 20s I wanted to get out of living in a group home so I could have privacy." For brief periods, he did have his own place, like a basement apartment that was prone to flooding.
He now rents a room in a small ranch house on a wooded lot near a lake with three roommates, none of whom have mental illness. But the dream of getting a nice place of his own is still there. He has accumulated things to fill such a place.
"I have a stereo, tons of DVDs, a new TV, my own twin bed, a sofa, a chair and end tables. I bought a lot of ‘vanity’ books, classics like Shakespeare and other writers. But I think if I actually read them I’d get really confused," he said with a laugh. "I want stuff that is dignified. My brother is holding some of my things for me so if I ever get a better place, I’ll have furniture to fill it."
Bruce has a good car, which is paid off, and some savings. He tries to keep up his appearance, and has several pairs of identical black shoes and navy blue oxford shirts with button-down collars." In the early years I felt stigmatized when people called me wacko, or loony, or crazy, and I thought if I looked nice I would be treated better. But clothes are expensive."
Another goal has been to run 500 marathons, and he’s almost there.
He no longer dreams much about traveling the world; instead, he has become a devoted "Star Trek" fan. His hopes of finding a wife, though, are still alive. "I’m working on my social skills, so when I meet someone I’m attracted to I can be able to ask her if she’d like to have a meal with me."
Along with his young man’s goals, Bruce has been spending more and more time thinking about how he can retire on Social Security disability payments, and whatever small savings he is able to accumulate.
LIVING ON THE GROUND
Kellianne O’Brien was nearing her 30th birthday when she was consumed with an urge to paint. She worked non-stop, dawn to dusk.
A professional painter and sculptor who had earned a bachelor’s degree in French and philosophy in her home state of Ohio, she was sleeping only two or three hours a night as she worked on her massive painting for about eight months. "A lot of emotion came out while I was painting. I was having intense, mystical, out-of-body experiences.… I also heard command voices telling me to quit my job, to do certain rituals like hug trees, or to talk to some people and not to others."
Quitting her job at a bagel shop led to eviction, homelessness and sleeping on benches." I was hearing many voices, but one of them was saying good things to me, and it was louder than the others. I knew they were external, and I thought they were spirits," said Kellianne, who was raised as a Catholic.
"I listened only to that one voice. It was like I was adrift at sea, on the verge of drowning, and that voice was the helicopter that was going to save me. One day it told me that by the sundown I would be saved. And in fact, that happened. A friend of mine from the bagel shop showed up with two mental health workers, and they took me away. I was going in and out of a catatonic state."
Kellianne’s memories of what followed in a state psychiatric hospital are grim." I was trying to describe my spiritual experiences, but the doctors didn’t believe anything I said. You can always tell when someone doesn’t believe you."
Despite the rocky introduction to the psychiatric profession, Kellianne responded well to medication and eventually moved into a group home. In 1998, she became the state of Wisconsin’s consumer affairs director for the Bureau of Mental Health, working on the "Recovery Initiative" that sets standards for how people should be treated-not directed-by doctors.
"Doctors should focus on people’s strengths, and not pathologize them. They should try to help people find hope when they are in despair," she said." Doctors need to become less arrogant. They believe everything they learned in school is right. They need to be more open-minded about others’ struggles and realities. They should have the humility to realize that they haven’t gone through what consumers have. The consumer is the expert, not you."
About four years ago, Kellianne, now 39, went off her medication because she wanted to see how her medications were affecting her.
"No (mental health professional) explained why I was taking them or what they were actually doing for me. I needed to find out."
The out-of-body experiences returned, so she went back on her medication.
"I went back on meds because they keep me on the ground, and I want to live on the ground. It’s very hard to live with your spirit outside of you."
Now, with a diagnosis of schizoaffective disorder, she takes antipsychotic and antianxiety medications, and works as a training specialist. She owns her own home and has been in a committed relationship with another woman for seven years. Her art has been displayed nationally.
And she still has a long list of goals, which include working to empower the mentally ill and the homeless.
"I’d like to have an impact with my art, I’d like to move to Europe, and I’d like to be able to get married."
SEEING THE WHOLE PERSON
"If you ask people with schizophrenia what they want, they’d say they want more money so they can live in a better place, buy a decent car and Christmas presents, or they want a girlfriend," says Dr. Diamond.
Physicians’ heavy-handed attempts to dispel all their patients’ "delusions" or silence their voices can be counterproductive.
"Look at all those researchers at the university who work all their lives thinking they’ll win a Nobel Prize. They know, on some level, they’re not going to win the Nobel. But if they didn’t have the delusion that they could, they might lose the initiative to do their work."
And he believes that a lack of initiative, for those with schizophrenia, is often more debilitating than hearing voices." People can hear voices and still be fully functional."
The important thing for doctors, he said, is to understand how their patients feel about the voices.
"For the most part, people don’t like hearing voices. They’re intrusive. One patient described her voices like this: ‘Imagine your teenage daughter had control of a radio in your head, and she controlled the volume and the station.’ "
On the other hand, there are patients who like the voices they hear. "Some voices are upbeat, they give advice and they make the person feel less isolated. Either the voices are a problem, or they’re not. We have to listen, and find out what’s going on."
Doctors also have to listen to consumers’ feelings about the social fallout that can result from prescription medicines. What’s an acceptable amount of weight gain? How do they feel about decreased sexual function? And what about the effort that goes into consuming large quantities of pills?
"For some people, taking a pill is a symbol of what they’re fighting for. For others, it’s a remembrance of what they’ve lost. Some are reminded by a pill that what’s happened to them is not their fault. And some see it as a condemnation.
"Because more doctors are working in community settings, they are starting to see their patient as a whole person, a person whose goals change over time," Dr. Diamond said. "This survey is one more piece in what is becoming a larger dialogue about what ‘getting better’ really means."
Chris Martell is a feature reporter for the
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