National Association for Rights Protection and Advocacy
1 February 2000
Little Hoover Commission
State of California
Attention Toby Ewing
925 "L" Street, Suite 805
Sacramento, CA 95814
U.S.A.
Subject: Analysis of the Scientific Grounds for Forced Treatment
Dear Mr. Ewing:
The undersigned and colleagues recently published in an on-line scientific journal an article entitled "Should Institutions that Commit Patients also be Gatekeepers to Information about Civil Commitment? Implications for Research and Policy" (McCubbin, Dallaire, Cohen & Morin, 1999). A citizen of California who read it asked us to forward a copy to your Commission; you will find it enclosed.
The article makes many points pertinent to your Commission's mandate. One of these is that very little research exists about what actually happens in civil commitment proceedings. Hence, we do not know if they respect the spirit and letter of the law, if community alternatives are seriously considered, if persons' rights to due process are respected, or if they accomplish any of their therapeutic objectives.
We argue that there is little such research because "outsiders" such as independent university social scientists or patient advocacy groups are denied access to the necessary research data by persons inside the institutions involved in civil commitment. The fact that almost no research exists on the above questions strongly suggests that those inside the institutions, who do have access to the data, hesitate to render their actual workings accountable to science or the public.
This means that society is unable to justify civil commitment laws on the basis of what they actually do. If this analysis is valid, it would be irresponsible to expand commitment even further into outpatient treatment orders; there is simply no record of success for the civil commitment system to build upon.
We understand that the Little Hoover Commission is considering wide-ranging reforms of California's mental health system. We have heard that one issue being debated has to do with forced treatment and community treatment orders. The Commission is probably aware by now that most of the existing research purporting to show the benefits of outpatient commitment is hampered by serious conceptual and methodological problems (Swartz et al., 1997; Swanson et al., 1997). Our own work, both at the clinical and scientific levels, has led to our conviction that forced treatment is rarely, if ever, justifiable with respect to persons considered to be suffering from psychological distress or mental disorder.
This conviction need not rest upon various moral arguments which you are already well aware of, since, for us, many other weaknesses on the scientific level render almost moot the moral arguments:
1) The efficacy of imposed psychiatric treatments. The efficacy of those treatments which are forced, in particular neuroleptic or antipsychotic medications administered to patients with a diagnosis of schizophrenia, is marginal (Cohen, 1997). At best, one-third of patients exposed to long-term neuroleptic treatment might have a relapse delayed by this treatment. In the short-term, non-response rates occasionally reach 65%. But even these results are questionable, because: (a) clinical trials are short (4 to 12 weeks) and we know that the benefits of medication tend to decline with time; (b) the trials rarely use active placebos, which are essential to assess the effect of the medication as such (conversely, trials for newer atypical neuroleptics, claimed to be less toxic, tend to use haloperidol as control; that drug has obvious adverse effects which "render successful blinding difficult, if not impossible" (Thornley & Adams, 1998, p. 1183)]; (c) serious biases afflict most clinical studies, such as those caused by sudden withdrawal from medication [withdrawal effects are mistakenly taken as signs of relapse showing the effectiveness of the medication (Lehrman & Sharav, 1997)]. An exhaustive meta-analysis by researchers from the Cochrane Group, an internationally respected research network which documents health research quality and "best practices" in medicine, found that not only do most schizophrenia trials fail to adequately report their methodology, but the poorer the reporting, the better the results found for the tested drug. This suggests that "schizophrenia trials may well have consistently overestimated the effects of experimental interventions" (Thornley & Adams, 1998, p. 1183). Unfortunately, there has been extremely little systematic study of whether psychoactive medications actually enhance functioning and well-being of persons receiving an appropriate alternative, e.g. intensive community care and supports. Research in alternatives to medication has been greatly disadvantaged, because most research in the mental health field consists of clinical trials and biochemical explorations funded by pharmaceutical companies (Valenstein, 1998). This research imbalance needs to be corrected by governments.
2) Iatrogenic disease from imposed treatments. Neuroleptic or antipsychotic drugs (the most commonly forced treatment) have the most serious adverse effect profiles of all psychoactive drugs, including considerable risks of permanent iatrogenic illness. For example, in middle-aged and elderly patients, conventional neuroleptic use for a single year carries a 29% cumulative risk of tardive dyskinesia (Jeste et al., 1999), a permanent, incapacitating disease affecting bodily movement and cognition. Although newer ("atypical") neuroleptics appear, in the existing short-term trials, to be less likely to produce tardive dyskinesia, all may induce movement disorders and their long-term effects remain unknown. In addition, the adverse effect profiles as provided by official sources such as the Physician's Desk Reference seriously underestimate number and severity of adverse effects, because (a) initial profiles are established by short clinical trials conducted for FDA approval, whereas many toxic effects appear only after months or years of use; (b) trials are conducted under circumstances which systematically minimize or fail to elicit toxic impacts, and which barely resemble patterns of drug prescription and use in ordinary clinical practice (Jacobs, 1999; Jacobs & Cohen, 1999); (c) knowledge of actually occurring adverse effects is woefully lacking since, at best, merely 1% of severe adverse effects are ever reported to any health authorities (Moore, 1998).
3) The efficacy of coercion with respect to mental health outcomes. The evidence base concerned with coerced treatment efficacy is scanty, failing to establish the effectiveness of coerced treatment on mental health and functioning indicators, according to reviews by Hiday (1992) and Winick (1997). Winick cites, however, anecdotal reports, informed clinical speculation, and several empirical studies suggesting that "medical and mental health treatment are more effective when provided on a voluntary rather than involuntary basis" (p. 334). Systematic empirical study of the effectiveness of coerced treatment has just begun. The first such study, by Nicholson et al. (1996), was unable to distinguish a pattern of benefits for those coerced compared to those not coerced. A more recent study by Kaltiala-Heino et al. (1997) was less ambiguous, finding that "[c]oercion is related to poorer outcome" with respect to changes in patients' "psychic status" [p. 318] (measured by the Brief Psychiatric Rating Scale and the Global Assessment Scale). Any reliance of a policy of forced treatment, including involuntary outpatient treatment, upon its therapeutic benefits must be supported by carefully designed research clearly establishing those benefits. There is simply no such evidence, to date, in the scientific literature.
4) Bioethics standards regarding incompetency and substituted decision making. The bioethics literature is quite clear that forced treatment is only potentially justifiable in the case of objectively established incompetence of the person, a condition not ordinarily met by outpatient treatment orders. A further condition is necessary, as argued by McCubbin and Weisstub (1998a): the decision to treat is one the patient would have made if temporarily competent (the pure best interests standard). However, as described by McCubbin (1998), actual treatment decisions rarely approach this standard, since treatment tends to automatically follow declarations of incompetence without any further explorations of the patient's interests. We have no evidence to suggest that the pure best interests of psychiatric patients are met by substituted treatment decisions. Indeed, experiments show that estimates of what treatment decisions other competent persons would make are largely in error. Basically, we have no reason to think that an incompetent person's treatment decision is any worse a guide to that person's pure best interests than a decision made on their behalf by a clinician, a family member, or a court-appointed substitute.
5) Coercion as a cost in substituted decision making. Substituted decision making should take into consideration not only the costs and benefits of treatment alternatives in the usual sense, but also the costs associated with coercion; that is, with overruling the patient's choice (McCubbin, 1998; see Kjellin, 1996). Whether persons are competent or not, there is no question that the experience of forced treatment involves their infantilization and humiliation. These effects must be harmful to the recovery process which sooner or later relies upon the patient developing his or her own psychological resources (in addition to psychosocial supports). Coercion of psychiatric patients, many of whom have been previously victimized by traumatic aggressions and abuses in childhood and early adulthood (Read, 1997; see Stefan, 1994) is likely to engender anger and hostility, but also passivity and chronic resignation. This was found in the empirical study by Kaltiala-Heino et al. (1997), who concluded that "coercive treatment arouses negative feelings in the patient, creates negative expectation about the outcome of the treatment, and fails to result in a trusting treatment relationship between the patient and the professionals. ... Use of coercion can also result in pushing the patient away from services" (p. 318). These costs of coercion, when combined with the uncertainty involved in substituted decision making, the questionable efficacy of psychoactive drug treatments, and their associated iatrogenesis, make it unlikely that we may ever arrive at properly justified substituted decisions to force psychiatric treatment.
6) Rights conflicts. An analysis of the bioethics literature, and of American court decisions, belies the applicability of the patient's "right to treatment" to treatment decisions made against the expressed choice of the patient (McCubbin & Weisstub, 1998b). The patient does, however, have more strongly-entrenched rights to dignity, integrity and autonomy. These individual rights have to be balanced against the rights of other persons and collective rights. Society may feel justified, for example, to limit certain liberties of a person in order to respond to a clear, imminent and severe menace to the life of that person or others. However, the use of psychoactive medications in psychiatry as chemical restraints has never been justified with respect to ongoing non-emergency treatment and care plans. Hence, no right of the patient or others can be seen to conflict with the patient's own right to choose such that it may justify forced psychiatric treatment.
In sum, there are so many weaknesses in the chain of logic necessary to justify forced treatment (questionable efficacy of treatments, documented iatrogenesis, damage to recovery process, uncertainty about what the patient would decide if competent, harm caused to the patient by the experience of coercion, and finally the patient's autonomy rights) that we conclude that a rational, responsible and ethical public mental health policy should not permit any forced psychiatric treatment against the expressed wishes of a person. Whether society can ever justify the forced use of psychoactive drugs for non-therapeutic purposes, i.e., to maintain the peace, is a separate ethical and practical question, but not one to be addressed by a system whose stated objectives are care, support and healing.
Rather than pointing the mental health system toward a more coercive direction, the weight of the evidence strongly supports a strictly voluntary, community based model incorporating a variety of the kinds of psychosocial supports that can help persons with severe psychological distress help themselves. Indeed, for the most part such persons may not even need "treatment"; rather, they need support. That means help with decent, secure and appropriate supported housing, educational opportunities, job reinsertion, counseling and accompaniment, strengthening of their own social network, the ability to distance themselves from abusive and unhealthy living circumstances, and the kinds of interventions that encourage hope and self-esteem rather than passivity and self-loathing (Mosher & Burti, 1994; National Council on Disability, 2000).
Undoubtedly, such a community care model has been widely accepted at the scientific and policy levels in the United States since the 1960s. Nevertheless, as described in McCubbin (1994), governments have more or less failed to implement it because they have allowed non-patient interests (health professionals, family lobby groups, government workers, and, indirectly but very strongly, pharmaceutical companies) to maintain the pretense of community care while distorting it to a system which relies almost entirely on biomedical treatments of persons "in" the community (Keen, 1998). It may be no coincidence that improvement rates for persons diagnosed with schizophrenia, despite an ever-greater rate of neuroleptic prescriptions, have declined since the 1970s and are now closely comparable to improvement rates seen during the first decades of the 20th century (Hegarty et al., 1994)! This has occurred despite scientific awareness of the crucial role of social/environmental factors in the development of psychological distress and hence the necessity to intervene directly upon them (Cohen C.I., 2000; Dalgard, 1994; Mirowsky & Ross, 1989).
We argue in McCubbin and Cohen (1999) that the best way to develop and implement a care model based on the interests and needs of those we mean to help, is to place reform in their hands: it is their interests at stake. Currently, however, users of mental health services are listened to far less than any other actors (such as professional groups, family lobbies, pharmaceutical companies); they suffer from systematic disadvantages in gaining access to power or exercising it, as outlined in McCubbin and Cohen (1996). A rational therapeutic and policy system should address these power deficits by finding ways to empower users and especially users acting collectively.
We hope you will find our views helpful, based as they are upon study of the international literature involving descriptions of various mental health systems over the past decades, and their (often failed) attempts to reform. This leads us to believe that a system relying upon biomedicine instead of support, and upon coercion instead of empowerment, is doomed to increasing costs, growing numbers of permanently disabled patients, and a disaffected and often angry clientele.
A strictly voluntary system of integrated community based supports, which aims to empower users individually and collectively, offers the prospect of a solution which can improve. On the other hand, the forced treatment option offers the prospect of a solution which can only get worse.
Thank you for your consideration of our views. You will find enclosed those papers of ours cited above.
Yours sincerely,
Michael McCubbin, Ph.D.
Associate Researcher,
Research Group on
Social Aspects of
Health and Prevention (GRASP)
David Cohen, Ph.D.
Professor, School of Social Services
Researcher,
GRASP
University of Montreal
CP 6128 Succ. Centre-ville
Montreal (Quebec)
H3C 3J7
Canada
email michael.mccubbin@umontreal.ca
Sources cited:
Breggin, P.R., & Stern, E.M. (1996). Psychosocial approaches to deeply disturbed persons. New York: Haworth.
Cohen, D. (1997). A critique of the use of neuroleptic drugs in psychiatry. In S. Fisher & R.P. Greenberg (Eds.), From placebo to panacea: Putting psychiatric drugs to the test (pp. 173-228). New York: Wiley.
Dalgard, O.S. (Ed.). (1994). Psychiatric epidemiology and social sciences [special issue]. Acta Psychiatrica Scandinavica Supplementum, 90 (385).
Hegarty, J.D., Baldessarini, R.J., Tohen, M., Waternaux, C., & Oepen, G. (1994). One hundred years of schizophrenia: A meta-analysis of the outcome literature. American Journal of Psychiatry, 151, 1409-1416.
Hiday, V.A. (1992). Coercion in civil commitment: Process, preferences, and outcomes. International Journal of Law and Psychiatry, 15, 359-377.
Jacobs, D.H. (1999). A close and critical examination of how psychopharmacotherapy research is conducted. Journal of Mind and Behavior, 20, 311-350.
Jacobs, D.H, & Cohen, D. (1999). What is really known about psychological alterations produced by psychiatric drugs? International Journal of Risk and Safety in Medicine, 12, 37-47.
Jeste, D.V., Rockwell, E., Harris, M.J., Lohr, J.B., & Lacro, J. (1999). Conventional vs. newer antipsychotics in elderly patients. American Journal of Geriatric Psychiatry, 7, 70-76.
Kaltiala-Heino, R., Laippala, P., & Salokangas, R.K.R. (1997). Impact of coercion on treatment outcome. International Journal of Law and Psychiatry, 20, 311-322.
Keen, E. (1998). Drugs, therapy, and professional power: Problems and pills. Westport, Connecticut: Praeger.
Kjellin, L. (1996). Coercion in psychiatric care: Formal and informal. Justification and ethical conflicts. Uppsala, Sweden: Acta Universitatis Upsaliensis.
Lehrman, N.S., & Sharav, V.H. (1997). Ethical problems in psychiatric research. Journal of Mental Health Administration, 24, 227-250.
McCubbin, M. (1994). Deinstitutionalization: The illusion of disillusion. Journal of Mind and Behavior, 15, 35-53.
McCubbin, M. (1998). Error under a pure best interests model of proxy decision-making: Implications for the justifiability of forced treatment. GRASP Working Papers, 17.
McCubbin, M. & Cohen, D. (1996). Extremely unbalanced: Interest divergence and power disparities between clients and psychiatry. International Journal of Law and Psychiatry, 19, 1-25.
McCubbin, M. & Cohen, D. (1999). A systemic and value-based approach to strategic reform of the mental health system. Health Care Analysis, 7, 57-77.
McCubbin, M. & Weisstub, D.N. (1998a). Toward a pure best interests model of proxy decision making for incompetent psychiatric patients. International Journal of Law and Psychiatry, 21, 1-30.
McCubbin, M. & Weisstub, D.N. (1998b). "Meeting the needs of the mentally ill": A case study of the "right to treatment" as legal rights discourse in the U.S.A. GRASP Working Papers, 20.
Mirowsky, J., & Ross, C. (1989). Social causes of psychological distress. Chicago: de Gruyter.
Moore, T. (1998). Prescription for Disaster. New York: Simon & Shuster.
Mosher, L., & Burti, L. (1994). Community mental health: Principles and practice. New York: Norton.
Nicholson, R.A., Ekenstam, C., & Norwood, S. (1996). Coercion and the outcome of psychiatric hospitalization. International Journal of Law and Psychiatry, 19, 201-217.
Read, J. (1997). Child abuse and psychosis: A literature review and implications for professional practice. Professional Psychology: Research and Practice, 28, 448-456.
Stefan, S. (1994). The protection racket: Rape trauma syndrome, psychiatric labeling, and law. Northwestern University Law Review, 88, 1271-1345.
Swanson, J.W., Swartz, M.S., George, L.K., Burns, B.J., Hiday, V.A., Borum, R., & Wagner, H.R. (1997). Interpreting the effectiveness of involuntary outpatient commitment: A conceptual model. Journal of the American Academy of Psychiatry and Law, 25, 5-16.
Swartz, M.S., Burns, B.J., George, L.K., Swanson, J., Hiday, V.A., Borum, R., & Wagner, H.R. (1997). The ethical challenges of a randomized controlled trial of involuntary outpatient commitment. Journal of Mental Health Administration, 24, 35-43.
Thornley, B., & Adams, C. (1998). Content and quality of 2000 controlled trials in schizophrenia over 50 years. BMJ (British Medical Journal), 317, 1181-1184.
Valenstein, E. (1998). Blaming the Brain. New York: Free Press.
Winick, B.J. (1997). The right to refuse mental health treatment. Washington, DC: American Psychological Association.