THE RIGHTS OF USERS OF
THE MENTAL HEALTH SYSTEM:
by Michael McCubbin & David Cohen - June 1999.
Michael McCubbin, Ph.D.
Groupe de recherche sur les aspects sociaux de la santé et de la prévention (GRASP)
Université de Montréal, CP 6128, Succ. centre-ville
Montréal (Québec) H3C 3J7, Canada.
fax (514) 343-2334, tel. (514) 343-6193; email firstname.lastname@example.org
David Cohen, Ph.D.
Professor, École de service social, Université de Montréal; Researcher,
GRASP, Université de Montréal.
XXIVth International Congress on Law and Mental Health, Toronto, June 1999.
Based on: McCubbin, M., & Cohen, D. (1998). Les droits des usagers de services en santé mentale: Le noeud étroit du pouvoir, de la loi et de l'éthique. Santé mentale au Québec, 23, 212-224.
Over the past 25 years, in Québec as in the rest of the western world, "mental patients" have become "users" or "consumers", and laws, legal procedures and principles have been developed ostensibly to make such change more than merely symbolic. This article suggests that for those users who most need the benefit of "rights", those rights themselves remain as symbolic as the change in terminology. Legal rights are empty gifts - indeed, cynically paternalistic - if those to whom the rights are attributed do not have the means to exercise them meaningfully. Concern for the legal rights of users must inevitably address the lack of power they experience within the mental health and justice systems. Research is urgently required in order to assess whether and how rights are experienced as concrete and empowering in the lives of users.
THE RIGHTS OF USERS OF THE MENTAL HEALTH SYSTEM: THE TIGHT KNOT OF POWER, LAW, AND ETHICS
We will argue that if an objective of public policy is to protect and advance the rights of users of the mental health system, particularly the most vulnerable, we are certainly going about it the wrong way. We will draw especially on our experience in Québec, where David Cohen, and our colleagues Bernadette Dallaire and Paul Morin, have conducted a variety of research projects observing what actually happens at the interface between law and psychiatry. This experience has been especially instructive for what we were unable to observe, or for what we did not see but should have in a mental health sector supposedly constrained by laws protecting the person and the person's rights and dignity. This is an altered version of an article published last fall in French in the journal Santé mentale au Québec.
During the 1970s, a convergence of well-known factors permitted some progress in the recognition of the rights of users of the mental health system, at least on paper. In the particular context of that time some users and their lawyers succeeded in convincing the courts that the users have at least some legitimate rights - such as the right to treatment, the right to informed consent, the right to refuse treatment, and, arguably, the right to least restrictive care. In general, these rights had the support of a variety of actors having power or influence in the system: lawyers, civil libertarians, caregiving professionals, and family members of users. However, notably absent from the policy arena at that time as well as today has been the voices of the users themselves. The courts listened to the lawyers and professional witnesses, and the legislators listened to the parent and friend lobby groups, but the users themselves were almost never heard.
With rare exceptions, the users of mental health systems have never had a significant influence upon the general public, upon politicians, or upon health and welfare service planners. While some actions involving user involvement or instigation did bear fruit, they amounted for the most part to the simple recognition that psychiatric patients also had the same underlying fundamental rights as those already accorded other citizens. Even convicted criminals preceeded psychiatric patients in having these fundamental rights acknowledged.
The fact that the venue for the acknowledgement of these basic rights tended to be the courts rather than the legislatures, public opinion, or service institutions meant that the claims of users became and remain couched in the language of "rights" rather than in a language based upon ethics, power, therapeutic efficacy or service rationality. This probably served a useful strategic purpose at the time, converging as it did with numerous emancipatory movements which also used the language of rights.
However, emancipatory strategies based on a rights discourse carries risks. Such discourse, like any language, structures our thinking. It favours certain ideas and perspectives while excluding or failing to recognize others. It is important to note, for example, that in western societies, and particularly in the individualistic American society, to affirm that some one "possesses" a right is not the same as holding that society is obliged to assure or help satisfy that right. To what extent are the acknowledged rights in a society based upon the recognition of ethical obligations of its members? Many of us assume that the rights of individuals rest upon the ethical values of a society, but they may well also simply be the result of a negotiated social contract - a contract in which the form is heavily influenced by the distribution of power among negotiators, in contrast to the Rawlsian ideal.
The quantity and quality of power that people possess do not only influence which rights will be recognized in principle, but, and this our central point, how these rights will be respected, how they will be interpreted, how conflicting rights will be harmonized, and - of particular importance for marginalized groups - how people will be able to exercise their rights if at all. As noted by the social economist Medema, a right is only a right if it is protected by the government. That is, rights are not protected because they are rights, rather they are rights because they are protected.
Completely inconsistent with a marketplace conception of rights as claims for goods, persons who need rights as a protection are those least able to advance claims for them and enforce respect for them. With the disappearance of the temporary alliance between users and those who advocated for them in the past, the most vulnerable individuals remain isolated, ignored and marginalized - even though the new "consumer movement" has advanced the interests of the more mildly troubled clients of the mental health system.
Distortion of Rights
In the western world, the tendency over the past 15 years has spun around toward a withdrawal of rights, toward qualification of rights, and, as argued by Susan Stefan, toward the affirmation of symbolic rights without any concrete existence. Today, the rights of users are interpreted, transformed or ignored by the judicial system, by numerous care and treatment professionals and by the administrative structures of services. For example: as I described here last year in a presentation with David Weisstub, the "right to treatment" is today more often the "right" to receive forced treatment, even if the original sense was the right for an involuntarily hospitalized patient to receive care and services and not be simply excluded from society.
* "informed consent", when that process is actually made explicit, is often no more than a form which protects the good conscience or legal liability of the treating professionals. As documented in a guide to psychiatric drugs published in Québec a few years ago by Cohen and Cailloux-Cohen, study after study, added to what we have heard from users themselves, show that few users are informed about the undesirable effects of the psychoactive medications prescribed for them.
* The notion of "least restrictive treatment", while it had only received partial legal recognition in earlier times, is now being used to advance coercion in the community via outpatient civil commitment orders.
* The "right to refuse treatment" has become completely subsidiary to the issue of the users' competence, which is often questioned more because of the fact of treatment refusal rather than any assessed lack of decision making capacity leading to the refusal. Applying the right to refuse in this way is of course, excuse my language, ass-backward.
* The criterion of "dangerousness", a supposedly severe test for justifying the exceptional deprivation of liberties of psychologically distressed persons, has been shown in a study in Québec by Cohen and colleagues to be operationalized in practice as little more than "need for treatment". This reflects what Paul Appelbaum has argued as the tendency of the system to operate in accordance with general public and professional attitudes toward the "mentally ill", independent of what the written law says. Nevertheless, family lobby groups have been campaigning hard to loosen the criterion of dangerousness even though in practice it has little to do with danger.
Rights Without Substance
These distortions are hardly surprising considering that chronic mental health users rarely have the resources necessary to make their rights respected. In addition to the fact that the vast majority have little or no money, and very many have social handicaps, it is difficult and often impossible for them to find advocates or lawyers to represent them who have sufficient interest to do so and adequate expertise in health law or civil rights law. The very few published comments on the judicial representation of users, by Michael Perlin for example, suggest that even when a user is represented by a lawyer, that lawyer is often incompetent in fulfilling that function.
Furthermore, it is almost impossible in most places to find any psychiatrist at all who would even consider providing a counter-expertise in favour of a user contesting a civil commitment order. This might not be so devastating for the contestent, if the courts and tribunals that decide these cases would be inclined to take seriously the evidence of psychosocial treatment and care professionals which conflicts with medical opinion - we all know how unlikely that is. Nor can users in a legal or paralegal setting count on their family members to advocate for them (although this does happen on occasion), since these people have their own needs and interests which can frequently place them in diametric opposition to the legal claims of the users - indeed, it is frequently they who instigate or petition for civil commitment, as observed by Dallaire & Morin. In other words, it is not sufficient to simply "give" rights to users. When rights are given rather than grabbed they can be distorted beyond all recognition: in the case of chronic users of psychiatric services it is too easy to identify the attributed needs of users, as defined by experts and families involved in their care and treatment, as being their "rights".
The paternalistic gift of rights risks being made in bad faith, serving the interests of the givers rather more than those of the recipients. For vulnerable or marginalized persons, such a gift too often consists mostly of pretty wrapping paper which nevertheless imposes an obligation on the person who receives it - hence the coercive exchanges that can occur under the name of "therapeutic alliance" or "contract", and hence the insistence frequently found in professional psychiatry literature which in the name of ethics evokes the duty of patients to "cooperate" with the treatment plan as the quid pro quo for their right to treatment.
Instead of abstract rights, users need the capacity to assert their claims, to enforce respect for their rights and to exercise them. Why are users rarely present when a court orders a psychiatric examination or commitment, as observed by Dallaire & Morin? Why do very few users contest continuation of commitment, as observed by Cohen and his team? Why are even the few contesting users usually unrepresented by lawyers or other advocates, and rarely present counter-expertise as also observed by Morin & Dallaire? Indeed, there is very little information about what goes on in civil commitment proceedings; the published studies could perhaps be counted on one hand. Why is there so little research to determine what the rights of users actually mean in courts and tribunals? A paper by McCubbin, Dallaire, Cohen & Morin has argued that both the fact of the lack of research and the difficulty in obtaining the cooperation of judges and psychiatrists in order to observe institutions involved in the law-psychiatry interface raises whether the discourse about the rights of users has accomplished more in protecting professional secrecy and autonomy than in advancing the dignity and other interests of users themselves. There is so little research on whether the rights of users are respected that that fact alone must raise the suspicion that the "system", so to speak, is protecting itself, and that the "gift" of rights to users is at best an empty gift and at worst a trojan horse facilitating the continuation or even enhancement of coerceive paternalistic intervention in their lives and personhood. If such a suggestion sounds too extreme, we would be happy to substitute another, which summarizes centuries of experience in constructing a society of laws: justice that is invisible is not just.
The Relation Between Rights and Power
Respect for the values of fair play as well as respect for the inherent dignity and autonomy of users implies that society must act to cede some of the power it currently invests in institutions, professionals and administrators, to users themselves. Certainly the results of such a transfer would be unforeseeable, which is anathema to policy planners and perhaps fearsome to caregivers, family members and especially a general public which wrongly associates the "mentally ill" with bizarre and dangerous behaviour - when we know from the research frequently presented at these meetings that any relationship is significant only in the statistical sense, and then only for some types of dual diagnosis patients with symptoms of psychosis.
In any event, there is evidence, recognized by the empowerment literature, that in exercising power individuals and groups progressively learn better ways of exercising it. Any parent, for example, knows that responsibility cannot be learned without the concurrent trust of others.
The willingness to lose power in transferring it to vulnerable persons provides the evidence that the "gift" is motivated by moral reasoning rather than being a simple manipulative game. The idea that we can "empower" individuals without a real transfer of power is the kind of absurd thinking behind current distortions of empowerment discourse whereby an empowering practice becomes one of paternalistically "helping" an individual to become a better person - or should we say "better adjusted to his environment" - rather than changing the environment, and its systems of oppression and marginalization, so that the person is more able to take advantage of it. It is this unfortunate twisting of the original ideals and objectives of empowerment as advanced notably by Rappaport, that is finally leading people like Isaac Prilleltensky here to distinguish real from fake empowerment by using language about emancipation and liberation - which interestingly was the language which some decades ago preceeded and inspired empowerment principles for professional practice.
There is no exaggeration in saying that users are alienated in the immense mental health system - or rather more pertinently in the interstices between the medical and pharmaceutical industries. The user is surrounded in this system by professionals confident in their specialized knowledge and techniques and operating with the resources and power of the state.
How can we expect an isolated and stigmatized individual, suffering emotional troubles and functional disabilities, to be able to alter or even hope to budge this system? The real empowerment of a user, as with other vulnerable and oppressed persons, must necessarily have an important collective dimension.
We don't have time to discuss here practical ways to achieve real rights and real power for users. We will suggest, however, that in order to alter the inertia of not only the mental health system but a society which helps to create and sustain chronically distressed and powerless persons, if there is any hope at all - and unfortunately that remains an open question - interventions have to simultaneously operate at therapeutic, family, community, institutional and especially those levels most connected to public policy formation. These interventions have to be guided by the understanding which we are trying to advance here, that thinking about ethics and rights with respect to disempowered users of the mental health system is facetious without also thinking about the plain issues of power.
Thinking about power is far from evident in published research; there is a need for research defining and identifying powerlessness and its dynamics connecting the personal and political. Such research is an essential prerequisite not only to rectify morally reprehensible wrongs, but also for further illuminating the operation of social determinants of health and wellbeing - much recent interest has been focussed upon control but unfortunately divorced from its social context and hence treated essentially as a psychological variable.
And, to emphasize what should be obvious but has not been reflected in practice, it is really quite impossible to devise and evaluate "empowering" interventions when we don't even know what the power deficits are and how they arise!
With respect to "rights", research is urgently needed to assess, through on the ground observation and not just through following the scanty paper traces left behind by the workings of the law and mental health systems, whether and to what degree those rights on paper are practically being enjoyed by users. And to the extent that they are not, we need to doggedly pursue why they are not. Clearly such questioning cannot remain in the realms of therapeutic and technical considerations - we have to stop being afraid to utter the crude words power, powerlessness, domination, oppression, forced treatment, coercion, fear, distrust, abuse - all phenomena which contribute to and exacerbate the distress and problems experienced by users and which prevent any reasonable chance for therapeutic intervention to enhance personal empowerment.
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