“A not uncommon paranoid delusion is that people are trying to poison them, particularly with their medicine.” –Steven M. Paul, M.D., Charlie Rose’s Brain Series 2: Schizophrenia
In January 2012, The Journal of Social Psychiatry and Psychiatric Epidemiology published a study which suggests that providers who prescribe neuroleptics are unaware of how impacted their patients are by the adverse effects of these drugs.
To compare patient and provider perceptions of these adverse effects, a group of 243 patients and their doctors completed the Liverpool University Neuroleptic Side Effect Rating Scale (LUNSERS). With this 51 question test, designed to ensure good practice, patients evaluated the presence and intensity of the effects of neuroleptics such as lethargy, loss of emotion, loss of sex drive, etc. Additionally, each patient’s doctor provided his or her perception of the presence and intensity of these adverse effects in their respective patient.
The data show that patients experienced significant adverse effects which altered their quality of their life, while doctors markedly underestimated how much their patients suffered. The study reads:
“The correlation between the total LUNSERS score reported by patients and doctors was very low…on average, patients perceived more adverse effects and with a significant higher distress than doctors.”
Initially, I was impressed by what I perceived to be the study’s attention to the quality of communication between patient and prescriber, and to the real harms caused by neuroleptic drugs. I thought this research helped to clarify the need for doctors to listen carefully and empathically to their patients, and to gather new resources with which they could support a patient’s wish to reduce or withdraw from neuroleptic drugs.
However, the conclusion reads:
Unfortunately, this conclusion brings only blindsiding redirection to the problem at hand. It lacks a curious attention to the fact that doctors are unaware of how harmed their patients are by the adverse effects of the neuroleptic drugs. It also fails to consider that providers might entertain new perspectives on their patients’ experiences, and ignores the need to find new ways of supporting the human experience of ‘psychosis’.
But what’s more alarming than the study’s biased and short-sighted analysis, is that it suggests providers’ perceptions of their patients’ internal experiences are “complementary”, and should be integrated with the patient’s own, actual experience. The holistic buzz words “integrate” and “complementary” are carefully chosen to denote popular imagines of well-being and connectedness. These words make palatable what could be more accurately described as an infiltration of the providers perceptions of how well the patient is doing on neuroleptics, in a stated effort to improve medication “adherence”. In other words, to coerce.
Why would a self-identified healer want to preserve and integrate their personal perceptions of the patient’s loss of sexual interest, loss of emotion, loss of energy, loss of cognitive function, etc., when the very quality of the patient’s suffering, particularly as it relates to the quiet and chronic adverse effects of psychotropic drugs, is itself such a singular experience?
I don’t know. But I do know that tending to the truth often calls for edgy and emotionally difficult conversation. For patients and providers alike, thinking critically about the adverse effects that come with the long-term use of psychiatric drugs can be an ego-dystonic endeavor. It is overwhelming to realize that our practice and livelihood could rest upon toxic soil. That what we thought we were doing to help, may in fact be causing more harm. This admission would call upon bio-psychiatry to practice that which it identifies as the hallmark of mental health: resiliency.
Now more than ever we need to reevaluate the benefits and harms that can come with psychiatric drugs–even when our consideration is met with disinterest, disbelief, or “integrated” opinions. We have the opportunity and responsibility to reassess the facts, to reconsider our beliefs, to investigate alternatives, and to change our course of action if we choose. By staying committed to the principles of veracity, empowerment and care, we are sure to find great gifts. The power inherent in this kind of practice– exercising a marginalized voice or tending to our mistakes– is the very essence of healing.
Abadi, S., Joober, N., Levy, E., Malla, A., Pawliuk, A.,R. (2012). Medication-adherent first-episode psychosis patients also relapse: Why? The Canadian Journal of Psychiatry, 57, 78-84.
Gilden, J., Staring, A.B.P., van der Gaag, M., Mulder, C.L. (2011). Does treatment adherence therapy reduce the expense of health care use in patients with psychotic disorder? Scizophrenia Research, 133, 47-53.
Barbui, C., Bianchini, M., Esposito, E., Mazzi, M.A., Nose, M., Ostuzzi, G., Tansells, M.(2012) Adverse Effects of Neuroleptic Drugs: Patient vs. Provider Perspective. Social Psychiatry and Psychiatric Epidemiology. 47, 157-164.
Mad in America hosts blogs by a diverse group of writers. These posts are designed to serve as a public forum for a discussion—broadly speaking—of psychiatry and its treatments. The opinions expressed are the writers’ own.