Why Patients May Not Want To Get Better

She was pleasant and in her thirties. Plenty of patients are more than a little overweight after years of anti psychotic medication, and she was. She was dressed very nicely, though, and my conversation with her had a disarmingly œnormal feel to it.

Enough doctors had told her about her weight that she was motivated to try a walking program. Any other kind of exercise just made her too tired.

I asked her about the voices.

The voices were there, all the time she was home alone. She was not bothered by the œcommand voices that are the most frightful. Just for the record ” I am scared, even if the patient is not, if there is someone who hears voices telling them to kill themselves and other people. The patient can tell me they know the voices are not real and will never do what they say, but I always make sure that the patient knows who to call if they feel they need to take the voices seriously. Sometimes it is a friend. Sometimes it is a therapist or social worker. Sometimes they just call the police. As long as I know there is something and they can tell right from wrong and real from voices, the patient makes it back out onto the street. If there is a real threat to life or limb, either theirs or somebody else's, the police or their designates for this sort of thing get called. The patient is taken to a safe place until things calm down, perhaps with a change of medication, and the patient is generally back on the streets.

I had expected this sort of discussion. It never happened. She said the voices she heard at home were conversations. Now if someone is paranoid, they can feel that other people are talking about them, but here that was not the case. She said they were ordinary conversations about things like buying light bulbs and cooking dinner.

I did something reallly gutsy. I asked her if there was any chance that she was just hearing through the walls of her apartment. She told me that she thought the voices were just someone in the next room talking, and had always thought that.

Hmmm

So I asked her how she got started on antipsychotic medications, and how long she had been on them.

She had been on medication about five years. Her boyfriend committed her to a hospital when she had threatened suicide at the time of a break up. This is a common story, and I accept it with equanimity. After all, she confided to me that she really did not want to commit suicide, was just trying to get her boyfriend back. Some therapy had convinced her she was lots better off without this guy, and it sounds as if she was and she knew it.

Nevertheless I will admit that this is one of the situations when I wonder about if we have advanced at all in psychiatric diagnosis. In the eighteenth century, this woman's diagnosis would surely have been œfailure of romantic love and I think other women would have nurtured her out of it. She did not seem to have the classic problems of schizophrenia nor to merit that label at all, ever. As for the voices, I was not convinced she had ever had any, especially as they had been controlled rather quickly with a low dose of anti psychotic, which had been changed twice because of side effects. Still, low doses had always been effective.

Hmmm.

The label of œschizophrenic is a strong one and should not be lightly applied. Once it appears in someone's record, it is strong enough to make plenty of employment options and numerous programs of higher education quite simply inaccessible to anyone carrying that label..

I phoned her social worker, who seemed delighted to get a call from a physician. This patient had been uncommonly easy to work with ” even œdocile. Schizophrenics are not too often described as œdocile, even female ones. Although she was elusive, I think the social worker had her doubts about this woman being a œreal schizophrenic, but whe was understandably reluctant to even discuss reversing a longstanding psychiatric diagnosis.

I think you can guess what happened next. I suggested the gentlest possible taper of medication, with lots of support. The patient was hesitant, understandably, as the medications had been her security blanket for many years. Not to mention the financial security blanket of her diagnosis and disability. She was thinking about some kind of job training, had been urged to take it slow. I cannot blame her for not wanting to give up the money that bought her food and paid her rent.

I renewed her medications. I documented carefully, as I do not believe in putting anything œargumentative in chart. Still, this woman had been compromised for a long time. Maybe we could at least open up other possibilities for her future gently. Or maybe I am deluding myself.

I suggested she try earplugs. Usually ineffective in schizophrenia, very effective with noisy neighbors. She certainly had no interest in buying them for herself. As for me, I tried not to hurt for her voluntarily limiting what I saw as multiple options for a life that could be superior to what she had. I did my best, really. She had few activities. Spent her days at the park or the mall or sometimes even at the free-of-charge day at a museum. She was a woman of leisure. I may actually have enjoyed being her (if she had not been without a husband) once in a blue moon, when the world wearied me profoundly, especially when she had a free-of-charge day at a museum.

I remember vividlly a similar case several years ago, where an older man had been receiving an older anti psychotic ” in fact, the oldest one ever invented ” which induced a ton of side effects, because he complained of some visual distortions. They sounded to me for all the world like the visual distortions that come with cataracts, for which he had never been tested.

At that time I had the power to order vision testing, which I did. The patient was surprisingly relaxed and œlaid back about the whole thing. He said it would be really nice if he could get off the medicine. Now he was a retired gentleman and had a veteran's pension which was, I think, at least a little higher than other people's civilian disability pensions because he didn't see real well.

This man would certainly continue to suffer from the drug's side-effects ” a movement disorder from which he would never recover even if he discontinued this medicine. But we did not go into that in any kind of detail, as he wanted to continue on his medication at that time, a valid decision until more tests were available.

Now the big problem with both of these patients is that I never saw them again. Not ever. I don't know if they followed up on my suggestions, but I strongly expect neither did. Whether they wanted their pensions and their lifestyle or whether the world was just too scary a place for them, I do not and never will know. Maybe either or both suddenly started yelling at the psychiatrist or finding an advocate; such things, I am told, do happen. Somehow, that is hard to imagine.

The real culprit here is the sub-culture of the chronically and persistently mentally ill. Most people who have lived in that subculture seem to believe that they are the way they are forever. My trying to tell them otherwise is like blowing them out of the water with a depth charge. One reason for this is that although there are all kinds of new insights, new treatments, and even new medications, there are layers of information and knowledge that seem to keep these things from getting to the patients. I am staggered by the number of people who seem to have abandoned all hope.

A corollary problem is that of secondary gain. A fixed income, however meager, can be deliriously desirable in a shaky economy and even if it is not as fixed as it looks.
One thing I had thought particularly strong in the United States is the presence of support groups, patient empowering, and the like. I have since learned that some of the larger support groups are actually financed by pharmaceutical companies. Often both support groups and doctors, who have little time and a fair amount of contact with pharmaceutical reps, are telling patients that they need to cling to drugs like a life raft.

Sometimes, being me is a very lonely thing. I am glad I have the world's most supportive husband.