To Be Sick and Not Know it (1-20-00)

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TO: California Treatment Advocacy Coalition
FROM: Carla Jacobs & Randall Hagar
DATE: January 20, 1999
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TO BE SICK AND NOT KNOW IT

Even if in desperate need of help, some people with mental illness refuse treatment because they simply have no idea that they are sick. They are suffering from "lack of insight." The second item below is a fact sheet on how mental illness can cause this loss of awareness of one’s own condition. The fact sheet is also attached to the very bottom of this message in Word--please use it to educate members of organizations you belong to as well as your area’s legislators and the editorial board of your local paper.

Preceding the fact sheet is a letter written to Assemblyman Martin Gallegos by Donnie Buchanan, a consumer from Georgia who knows all too well what it is like to lack insight. His story is one full of courage. It also points to why California needs the effective program for Community Assisted Outpatient Treatment (a/k/a outpatient commitment) that Assemblywoman Helen Thomson’s AB1800 will provide.

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The Honorable Martin Gallegos, Chairman
Assembly Health Committee
State Capital Bldg., Room 6005
Sacramento, CA 95184

RE: AB 1800

Dear Chairman Gallegos:

Assembly Bill 1800 will soon be amended by Assemblywoman Helen Thomson to provide earlier and more continual treatment for persons with mental illness who are too ill to access it voluntarily.

I urge you to support this vital piece of legislation.

I am a person with schizophrenia who has had a positive experience with assisted treatment (outpatient civil commitment). The five-year commitment I experienced helped keep me involved in regular treatment, including the taking of medication and participation in rehabilitation programs. Unfortunately, to obtain adequate treatment (through the outpatient commitment), I had to shoot myself in the chest as a result of a voice directing me to kill myself. Before the civil commitment, I was hospitalized 30 to 40 times and ended up in jail because of my symptoms.

Since being on the commitment and afterward, I have been able to take medication regularly, work a part-time job, and attend a local day treatment program. If I hadn't been placed on the outpatient commitment, I probably wouldn't be alive today.

In my opinion, AB 1800 would greatly reduce the chances of violent episodes such as the one I experienced, as well as help stop the hospital and criminal justice revolving doors. It would also help to provide badly needed treatment for the most severely ill consumers. As someone who's "been there", I can tell you that the provisions in AB 1800 are the right thing to do.

In advance and as a consumer/advocate, I thank you for support of AB 1800.

Sincerely,

Donnie Buchanan

{ADDRESS DELETED}

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LACK OF INSIGHT—a Barrier to Voluntary Treatment

"Lack of insight" (the inability of a person to realize, or accept, that he is suffering a mental illness) has long been believed to stem from defensive denial, partly because of the stigma associated with these diseases. While denial no doubt contributes to some people with mental illness refusing treatment, research shows that lack of insight just as frequently results from the underlying brain disorder itself. The brains of those who suffer from this particular symptom of mental illness are often structurally different from those who do not. Treatment refusals stemming from lack of insight are thus not "informed medical decisions." It is the malfunctioning of the brain itself that causes the impaired decision-making. There is nothing civilly right about denying treatment to people with impaired decision-making who are too sick to obtain help for themselves.

Many scientists in numerous professional publications have reported significant correlation between poor insight and deficits in frontal lobe functioning. Others, some of whom are quoted below, have reported on the devastating consequences of the lack of insight:

Impaired insight is a very common symptom of schizophrenia and bipolar disorder. Both inpatients and outpatients with schizophrenia and bipolar disorder (manic depression) have shown the same rate of unawareness: about 50%. (Husted J. Journal of the American Academy of Psychiatry & Law Vol. 27, no. 1, 1999. Amador X, et. al. Archives of General Psychiatry, 1994.)

Being unaware of being ill—lacking insight—is strongly correlated with non-adherence to treatment. (Amador X; Strauss D; Yale S; Gorman J & Endicott J. The American Journal of Psychiatry 150:873-879, 1993. )

Patients with schizophrenia and schizoaffective disorder with poor insight have very poor adherence to either psychosocial treatment or medication even when they have expressed their desire to participate and work at the program. (Lysaker P; Bell M; Milstein R; Bryson G & Beam Goulet J. Insight and Psychiatry Vol. 57, November 1994.)

Lack of insight not only leads to noncompliance with community treatment but leads to the revolving door of involuntary hospitalizations. (McEvoy J, Freter S, Everett G, Geller J, Appelbaum P, Apperson L & Roth L. Journal of Nervous and Mental Disease 177(1): 48-51, 1989.)

There have been fewer studies of insight as it relates to affective disorders such as bipolar disorder, nevertheless, as in schizophrenia, studies of affective disorders find that lower levels of insight are correlated with a poorer course of illness, lack of adherence to treatment and increased involuntary hospitalizations. (Ghaemi N & Pope H, Jr. Lack of Insight in Psychotic and Affective Disorders: A Review of Empirical Studies. Harvard Review of Psychiatry, May/June: 22-33, 1994. Also see Amador et. al. Unawareness of Illness in Schizophrenia, Schizoaffective and Affective Disorders. Archives of General Psychiatry, 1994.)

The inability of the noninsightful patients to understand they have a brain disorder or to accurately evaluated their living conditions and plan for daily needs supports the necessity for some form of "community Assisted Treatment." Without supervision or court order, the person may not seek treatment, or if temporarily coerced into treatment when hospitalized, be unable or unwilling after discharge to comply with the treatment regime. (Husted, J. Journal of the American Academy of Psychiatry & Law Vol. 27, no. 1, 1999)

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� See the following journal articles: Young et. al. Schizophrenia Research, 1993; Lysaker et. al. Psychiatry, 1994; Kasapis et. al. Schizophrenia Research, 1996; McEvoy et. al. Schizophrenia Bulletin, 1996; Voruganti et. al. The Canadian Journal of Psychiatry, 1997; Lysaker et. al. Acta Psychiatrica Scandinavica, 1998; Young et. al. Journal of Nervous and Mental Disease, 1998; Morgan et. al. Schizophrenia Research, 1999a; Morgan et. al. in the journal Schizophrenia Research, 1999b; Smith et. al. Journal of Nervous and Mental Disease, 1999. Also see Bell et. al. in the book Insight & Psychosis, Amador and David, Eds., Oxford University Press.

This document was compiled by the California Treatment Advocacy Coalition

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California Treatment Advocacy Coalition
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