Health Affairs, 25, no. 3 (2006): 734-736 doi: 10.1377/hlthaff.25.3.734 © 2006 by Project HOPE	New Online   House Health Reform Bill   Paying for Reform   Vetting AHIP's Report   HIV/AIDS Costs   Brief: Insurance Reform   HA Blog Top 10

This Article Abstract Reprint (PDF) Submit a response to this article Alert me when this article is cited Alert me when Comments are posted Alert me if a correction is posted Services E-mail this article to a friend Similar articles in this journal Similar articles in PubMed Alert me to new issues of the journal Add to My Personal Archive Download to Citation Manager Reprints & Permissions Citing Articles Citing Articles via Google Scholar Google Scholar Articles by Sharfstein, S. S. Articles by Dickerson, F. B. Search for Related Content PubMed PubMed Citation Articles by Sharfstein, S. S. Articles by Dickerson, F. B.

Regulation & Policy

PERSPECTIVE

Psychiatry And The Consumer Movement

Abstract

 
We agree that consumers’ perspectives have had a limited impact on major policy shifts but note that they have resulted in important changes in the role of patients and families in all aspects of mental health treatment. In addition, we take issue with the use of "consumer" and "survivor" as one combined term because of the words’ very different connotations. The field of psychiatry and the consumer movement may still differ in their views on the need for involuntary treatment but are now generally allied around the need for more effective and better-funded psychiatric services.

Of course, consumers now are having much more of an impact in all aspects of health care. As medical care has become more market driven, the concept of informed consumers has taken hold in much of medicine. In mental health, the complexities of insurance coverage and managed care have required organized consumer and family involvement in the politics of reimbursement; such activities have included testifying in state capitals, introducing legislation, and lobbying in the halls of Congress. These efforts have achieved modest successes, although we have a long way to go when it comes to such critical issues as parity for mental health care under private and public insurance, especially Medicare, as well as other efforts to ensure that psychiatric care is included in overall health coverage. However, we do take issue with several ideas presented in this excellent piece.

Use of "consumer" and "survivor." Tomes’s use of "consumer" and "survivor" as one combined term is misleading, because the two words represent very different ideas. "Consumer" refers to people who use services, implying that they choose the services autonomously. As indicated above, input from and participation of consumers in mental health services and treatment planning have become commonplace. Consumer-run services as well are valued within traditional mental health programs. And, as Tomes points out, many states now have offices of consumer affairs within their mental health authority.

"Survivor," however, refers to people who previously received mental health services and feel that they have been damaged or traumatized by their psychiatric treatment. Such people might perceive that this treatment caused or exacerbated their problems. In the past, some with this viewpoint became activists and called themselves "ex-inmates" and sought "liberation." Their main objection was to involuntary hospitalization and forced medication treatment. Many in this movement denied that schizophrenia and bipolar disorder are mental or brain disorders. "Survivor" in this context implies that these people are similar to Holocaust survivors in having endured extreme hardship at the hands of abusive captors. While highly vocal, these people were always a very small minority of consumer advocates.

Antipsychiatry movement. We believe that the "survivor" terminology is unfortunate and feeds the antipsychiatry movement in this country, now most epitomized by the Church of Scientology. Scientology has used its considerable financial resources to wage media campaigns against psychiatry and the pharmaceutical industry. Whether through celebrities such as Tom Cruise or public demonstrations at American Psychiatric Association (APA) meetings, they make a good deal of noise. Of course, this movement has little traction, as more evidence accumulates that serious mental illness has a neurobiological basis. Many people in the current consumer movement, including those in the National Alliance for Mental Illness (NAMI), agree that there has been increasing reliability in psychiatric diagnoses and greater effectiveness of biological and psychological treatments.

Involuntary treatment. Missing from the Tomes overview is any reference to the issue of violent behavior that sometimes accompanies major mental illness and that often is used to justify procedures for involuntary confinement and treatment. That aggressive and threatening behavior can accompany serious mental illness is now established, although it needs to be acknowledged that these problems occur in only a small minority of people. The violence potential is often a result of lack of illness insight, which in and of itself may be a symptom of psychiatric disorder and which can lead to differing viewpoints between patients and psychiatric treatment providers.

Basics of psychiatry. We believe that we need to go back to some of the basics of psychiatric diagnosis and treatment to understand the history of the consumer, as well as the consumer/survivor, movement. These basics include the following.

1. Serious mental illnesses are often pervasive and can affect many domains of a person’s life, including their "personhood." The often early onset of these disorders in the life cycle and their long course can lead to high levels of lifelong disability relative to other medical disorders. Such disability brings a high cost to the individual and presents a great burden for his or her family.
   
2. The causes of psychiatric illness—that is, the precise biological mechanisms—are not known with certainty, despite great progress in our understanding of the brain and how the brain functions. Therefore, many explanations have been offered to the fill the vacuum created by this uncertainty. In the field of psychiatry, we have posited in the past that faulty parenting and deeply rooted psychosexual conflicts were causal factors. Neither of these attributions is maintained today by mainstream psychiatry. It is not difficult to see how consumers might also attribute their problems to various external factors, including perceived deficiencies in psychiatric treatment.
   
3. The psychiatric treatments that have been validated as helpful are unfortunately often incomplete. For example, antipsychotic medications help reduce illness symptoms but often do not eliminate all symptoms and can lead to unpleasant and troubling side effects. The discovery and dissemination of these medications led directly to deinstitutionalization in the 1960s and 1970s, which was a poorly planned movement of patients from long-term hospital care to communities that were unprepared to meet the their needs. As Tomes notes, the "psychiatric survivor" term was first invoked in the upheaval of deinstitutionalization.
   
4. Current treatments, which are improvements over these older medication strategies, are evidence based but also remain incomplete. We are able to make patients "better but not well."² We have a large zone of clinical uncertainty in psychiatry.
   

Next steps. So, with all of the above factors in mind, what are the next steps for psychiatry and the consumer movement? Although we disagree with some in the consumer movement on involuntary treatment, psychiatry does not really compete with the movement in its bid to exercise leadership, and we need to work together to make treatment more acceptable, effective, and accessible. The field of psychiatry and the consumer movement have both become less ideological and more pragmatic, and they share common goals. For example, within psychiatry, there is much less controversy about the virtues of self-determination, patient choice, and recovery. There is agreement that medications and psychosocial treatment together can make a great difference.

Invest in research. We must invest heavily in research and in the search for cure therapeutics. As noted recently by Thomas Insel, head of the National Institute of Mental Health (NIMH), we should not be satisfied with new treatments that lead to only marginal improvements over existing interventions; we need research that will lead to cures for mental illness.³

Use resources effectively. In the meantime, we must look to use the resources at our command in the most effective ways. The best example cited by Tomes concerns the history of the Community Support Program (CSP) at the NIMH. This program, which actually was a transfer of hospital improvement grant dollars to funds for community services, focused on the states as change agents to move resources into psychosocial rehabilitation and housing programs as well as supportive employment. The leaders of the program (including one of the authors, Sharfstein) saw this as an effective way to begin integrating psychiatric patients—that is, consumers—into community life. Bringing in consumers to help set the plans, articulate the goals, and participate in the policies was a salutary innovation of the CSP. Consumers have been able to push government at both the federal and state levels to increase support for these approaches.

WE NOTE THAT TO DAY, in contrast to a quarter-century ago, if a person develops a serious and persistent mental illness, the options for care and treatment are more humane and more effective. And patients as consumers have more rights and responsibilities than they ever have had. But, at the same time, we in the field of psychiatry have a long way to go, and we need all the allies we can get.

Editor's Notes

 
Steven Sharfstein (SSharfstein{at}sheppardpratt.org) is president and chief executive officer of Sheppard Pratt Health System in Baltimore, Maryland, and president of the American Psychiatric Association. Faith Dickerson is director of psychology at Sheppard Pratt.

NOTES

Top NOTES

 

1. N. Tomes, "The Patient as a Policy Factor: A Historical Case Study of the Consumer/Survivor Movement in Mental Health," Health Affairs 25, no. 3 (2006): 720–729.[Abstract/Free Full Text]
2. G.L. Klerman, "Better but Not Well: Social and Ethical Issues in the Deinstitutionalization of the Mentally Ill," Schizophrenia Bulletin 3, no. 4 (1977): 617–631.[Free Full Text]
3. T.R. Insel and E.M. Scolnick, "Cure Therapeutics and Strategic Prevention: Raising the Bar for Mental Health Research," Molecular Psychiatry 11, no. 1 (2006): 11–17.[CrossRef][Web of Science][Medline]

                      What's this?