Thank you, Drs. Ronald Pies and Joseph Pierre

LETTER TO THE EDITOR

Thank you, Drs. Ronald Pies and Joseph Pierre, for your commentary “Quality of Life and the Case for Antipsychotics” that is completely consistent with my experience with my now-adult son who had very early-onset schizophrenia.

Anosognosia has always been a major feature of his disease when he wasn’t taking antipsychotics. He ultimately became so disabled by catatonia and psychosis that he could essentially no longer talk. He was very frequently immobilized by stereotypies-often violent and destructive-and was incapable of virtually all self-care, including consuming a life-sustaining diet. His extreme suffering and disability cannot be described in a brief comment and probably not in the book I fantasize about writing.

On (involuntary) antipsychotics, my once-brilliant child can again speak, write, read, and maintain hygiene and has regained motor functioning. (Benzodiazepines initially helped enough to keep him out of malignant catatonia and catatonic stupor, but ultimately that was about all.) He has been hospitalized 19 times. It has now been over a year for this admission because this time his psychiatrist recognized that my son doesn’t stand a chance of not being a danger to himself and others, much less having any quality of life, without being on a long-acting antipsychotic. He is still severely paranoid but not utterly disabled.

I am a (now-retired) general internist, but most of my expertise with schizophrenia comes from being a parent and doing considerable mental illness–related volunteer work and studying as a result. My experience cannot compare to yours but is entirely consistent with it.

I have also been vilified for advocating for timely treatment for my son, which despite my consistent efforts did not happen until tremendous damage had occurred. There are powerful anti-psychiatry laws in our state that were passed under the guise of “civil liberties” by legislators more influenced by civil liberties lawyers and patients who have endured bad experiences than by parents like me and psychiatrists-and who are not disabled like my son.

Some of the points and conclusions made in your article are especially key in my lived experience–based opinion:

• What we call schizophrenia is probably a spectrum or many different diseases, but they are diseases (experts don’t seem to know which theory is best supported; my best guess is it’s some of each)

• Therefore, generalities about antipsychotics (and all psychotropics) are usually unhelpful; care must be individualized, as in all of medicine, and those best able to provide individualized care for patients with schizophrenia are medical specialists, often in conjunction with caring competent family members

• As with most medical treatments for most serious illness, there are significant adverse effects of antipsychotic medications; physicians and patients must engage in an ongoing cost-benefit analysis, like Ann Landers did when she asked readers if they were better off with or without a suboptimal spouse or partner

My son has some adverse effects from his medication, but to me it is 100% apparent that he is better off with it, to a large extent because he suffers less when on it. I want him treated for this brain disease that renders him wretched, incapacitated, and dangerous, just as I would for acute leukemia, even if long-term sequelae are possible. Relieving acute severe suffering is one of the primary responsibilities of physicians-and parents. I don’t want him to suffer constantly for the rest of his life and be a danger, even if one study showed an association between antipsychotics and brain atrophy. (Which of course happens when the disease is untreated.)

I was taught to start low, go slow, and follow closely when it comes to medication. Of course, psychiatrists need to do the same in chronic situations, but a high level of caution doesn’t mean medication is not indicated for the sickest patients with schizophrenia. (I understand the biopsychosocial approach and in no way am saying only meds are needed.)

Thank you for continuing to help patients such as my son in the face of the anti-psychiatry movement.