II. MENTAL PATIENTS' RIGHTS

The strength of a society's commitment to justice and humanity can often be assessed by examining its treatment of its most vulnerable and/or disliked citizens. Few individuals have been as disliked, feared, persecuted, or stigmatized as have the mentally ill. Briefly reviewing the treatment of the mentally ill can provide a useful perspective in addressing present issues in mental patients' rights.

This article will examine mental patients' rights, including legal rights (judicial decisions, legislative and administrative enactments); human wants (basic human rights and entitlements); and clinical needs (the mental-health view of the right of every citizen to be free of the pain and limitations of mental illness).

In the United States, the mentally ill have historically experienced deprivation of many rights enjoyed by other citizens. Since colonial times there has been essentially a two-tier system distinguishing the treatment of the rich from that of the poor. The insane rich were usually kept at home—or more recently, in private institutions—and concealed from society to protect the reputation of their families, while the insane poor were left to the care of local communities. If the insane poor were seen as harmlessly deranged, society's main fear was that they would become public charges and drain the community's resources. To prevent this from happening, the mentally ill were often subjected to whipping and banishment, forced to wander from village to village. If they refused to leave their home community, their "treatment" frequently was incarceration in the local jail or poorhouse (Deutsch).

During the nineteenth century "moral treatment" was brought to America by a Quaker clergyman, the Rev. Thomas Scattergood. Great success, as high as 90 percent improvement in conditions, was reported by its early practitioners. The treatment was accomplished by removing patients from their family and community and placing them in a peaceful rural retreat—the asylum—where, under the absolute control of the physician, they lived a highly disciplined existence and engaged in useful employment (Rothman). "Moral treatment" represented an improvement in the conditions under which the mentally ill were treated. While still deprived of the legal and civil rights enjoyed by other citizens, they were at least given humane and hopeful treatment. This improvement, however, did not last long. By the end of the nineteenth century, as the result of a large influx of immigrants and a growing population of chronic patients, the asylums became overcrowded and inadequately staffed. Overcrowding and disorder created justification for mechanical restraints and punishments that grew in usage and severity; hospitals became human warehouses instead of treatment centers.

The failings and increasing harshness of public asylums did not lead to their dismantlement. Loose commitment laws facilitated the expulsion of the mentally ill from an increasingly urban society less willing to tolerate them. Efforts to improve conditions were sporadic, and progress was slow and uneven. Despite numerous books and exposés, including Clifford Beers's A Mind That Found Itself (1930), Albert Deutsch's The Shame of the States (1948), and Mary Jane Ward's The Snake Pit (1946, later made into a movie), the period of incarceration without adequate treatment continued well into the first half of the twentieth century.

By the mid-1950s, the mental-health community began to express its discontent with the situation in state mental hospitals. The resident population soared to 550,000, and approximately 40 percent of hospital beds were in state and county mental hospitals. The president of the American Psychiatric Association declared in 1958, "I do not see how any reasonably objective view of our mental hospitals today can fail to conclude that they are bankrupt beyond remedy" (Solomon, p. 7).

Public concern about the plight of the nation's mentally ill led Congress to establish the Joint Commission on Mental Illness and Health in 1955. The commission advocated the goal of community-based mental-healthcare accessible and responsive to the needs of all citizens. Community mental-health centers would provide the mentally ill with treatment close to their homes and jobs, and would reduce the need for prolonged or repeated hospitalization. As the result of the development of psychotropic medicine (medications that therapeutically affect an individual's mood or cognitive thoughts), expansion of community-based care, increased public concern about civil rights, and some greater tolerance of alternative behaviors, the population of the hospitalized mentally ill dropped to 220,000 during the 1960s and 1970s. This process of deinstitutionalization, however, did not always proceed smoothly. Frequently, patient discharges from hospitals occurred precipitously and without adequate aftercare. In addition, communities protested that they were becoming "dumping grounds" for patients unprepared for the demands of community living and for whom no adequate support system had been established (Stone v. Miller, 1974).

Despite the increased willingness of the public to support improved care for the mentally ill within their home communities, the plight of those treated in large state hospitals was still characterized by dehumanization, inadequate facilities, and insufficient staff. Such conditions provoked a flurry of lawsuits during the 1960s and 1970s, which led to increased attention to the rights of the mentally ill. These cases fit into three broad categories: the right to treatment; the right to refuse treatment; and the right to be placed in the least restrictive alternative. A fourth right, the right to liberty, represented by the U.S. Supreme Court's O'Connor v. Donaldson decision (1975), has aspects that encompass the three other categories.

Right to Treatment and Right to Liberty

During the 1960s, mental-health litigation reflected the increased activism of many civil-rights attorneys who turned their attention to mental patients' rights. In a parallel development, courts that had previously refused to rule on matters of medical treatment began, during the same period, to question whether conditions that would enable treatment to occur actually existed in facilities to which the mentally ill were committed. The concept of a right to treatment was first enunciated by Morton Birnbaum, who wrote the following in an American Bar Association Journal article:

The fact that a person has a mental ailment is not a crime. Therefore, if anyone is voluntarily restrained of his liberty because of mental ailment, the state owes a duty to provide him reasonable medical attention. If medical attention reasonably adjusted to the needs is not given, the person is not a patient, but … virtually a prisoner. (Birnbaum, p. 499)

As a result of such thinking, a number of lawsuits were filed under the rationale of a constitutional right to treatment. Facilities in which widespread abuses and violation of clinical and legal rights were common were excellent targets for such litigation. Such was the situation that existed in certain hospitals in 1971, when the Wyatt v. Stickney lawsuit was brought against the Alabama Mental Health System. It was established during the trial that the state legislature had seriously underfunded Parlow and Bryce hospitals, leading to severe understaffing, deterioration in services and facilities, and limitation on treatment and basic care for the patients there. As a result of the rights violations described in the trial, the judge promulgated minimum standards for nearly every aspect of institutional care and a detailed program for implementation.

The minimum standards promulgated by the court include the following: a provision against institutional peonage; a number of protections to ensure a humane psychological environment; minimum staffing standards; provision for a human-rights committee at each institution; detailed physical standards; minimum nutritional requirements; a provision for individualized evaluations of patients, habilitation plans, and programs; minimum staff/patient ratios; and a requirement that every mentally impaired person has a right to the least restrictive setting necessary for treatment (Wyatt v. Stickney, 1971).

The courts have felt justified in moving into the vacuum caused by a lack of national standards to assure the treatment rights of involuntarily committed psychiatric patients. In the O'Connor decision, for example, the Supreme Court dismissed as "unpersuasive" the argument that the court should not be involved, noting: "Where treatment is the sole asserted ground for depriving a person of liberty it is plainly unacceptable to suggest that courts are powerless to determine whether the asserted ground is present" (O'Connorv. Donaldson, 1975, p. 574, n. 10). In other cases, such as Wyatt v. Stickney, the judges have consulted with various professional organizations, taken expert testimony, and come up with what they considered minimum standards. These standards tend to be more of the mortar-and-brick and staff- to-patient-ratio variety than to pertain directly to the quality of treatment. The basis behind the right-to-treatment issues as reflected in Wyatt and other cases is the expectation that if a psychiatric patient is to be involuntarily confined in order to be treated, then the facility in which he or she is placed should at least have the minimum capacity to deliver such treatment as will assure the patient's recovery and release. To do other than this is to "warehouse" patients and thus violate their constitutional right to liberty. The limited holding of the Supreme Court's O'Connor decision emphasized this point: "A state cannot constitutionally confine without more [emphasis added], a nondangerous individual who is capable of surviving safely in freedom by himself or with the help of willing and responsible family members or friends" (O'Connorv. Donaldson, 1975, p. 576).

Changing Perspectives on Patient– Physician Relationships

The Supreme Court's decision in O'Connor v. Donaldson reflects an evolving philosophy about the rights of the mentally ill in relation to society and to mental-health practitioners. For hundreds of years, many concerned with care and treatment of the mentally ill believed that their condition categorically prevents them from accurately perceiving reality and making reasoned judgments. Therefore it was considered the state's duty, according to the principle of parens patria (the state acting as a good parent to the nation's citizens) to take care of such afflicted individuals, and to prevent them under the state's police power from harming themselves or others, or disturbing the peace and safety of the community (Fowlkes).

Consistent with these commitment perspectives has been the psychiatric view that life and health or physical and emotional well-being are at the pinnacle of any hierarchy of values and should be maintained at any cost—even if the cost is a considerable loss of liberty for the individual whose health is at stake (Kopolow, 1976). A corollary to this position is the belief that mental illness is a disease of processes that impairs an individual's judgment and capacity for responsible action in relation to self and others. In refusing hospitalization and treatment, therefore, the patient's wishes might very well be discounted and viewed as symptoms of his or her mental illness (Sadoff and Kopolow).

A countervailing philosophy was reflected in the civil-liberties perspective and shared by a growing number of lawyers and mental-health professionals concerned with human rights. This view maintains that although a person's physical and mental health are important they are not necessarily of the highest value, and that freedom of the individual to place a higher value on other things should be respected. Those espousing this view maintain that what is called "mental illness" is not a process that necessarily interferes with or invalidates a person's will or lessens responsibility for his or her behavior (Szasz). Even psychotic individuals should have their wish to live at home rather than in a state mental hospital taken into consideration by the judges and psychiatrists who determine their fate.

Increasingly, states have abandoned the parens patria doctrine as being intrusive into the lives of individuals and have begun to utilize a more limited criterion of dangerousness as the justification for the use of "police power" for commitment. The O'Connor court seemed to sanction a definition of dangerousness as applied to civil commitment when it declared:

Of course, even if there is no foreseeable risk of self injury or suicide, a person is literally dangerous to himself if for physical or other reasons he is helpless to avoid the hazards of freedom either through his own efforts or with the aid of willing family members or friends. (O'Connor v. Donaldson, 1975,p. 574, n. 9)

As a result of such court decisions, the test for commitment in many states now requires that the person be harmful to self or others by reason of mental illness and that no less restrictive alternative exists (Stone).

Initially, right-to-treatment decisions such as Wyatt v. Stickney and the right-to-liberty case of O'Connor v. Donaldson were welcomed by some mental-health professionals who viewed litigation as a potentially effective means for obtaining the release of patients who were receiving only custodial care or should not have been institutionalized in the first place. Others considered litigation as an intrusion into clinical practices that would produce great disruption in the mental-health system and no long-term benefit for patient care. While this debate continues, it does seem clear that litigation did focus public attention on the plight of the hospitalized mentally ill and, at least in the short term, resulted in pressure on legislatures to increase mental-health appropriations in order to avoid litigation or to avert increased court intervention.

Traditionally, the decisions about therapies and medical procedures have been within the domain of the treating professional responsible for the patient. In many states, patients who were hospitalized involuntarily were considered incompetent to make decisions on their own behalf. As a result of these medical and legal perspectives, patients frequently were denied the rights of other citizens when they were hospitalized. They were not permitted to vote; often they could not make phone calls or correspond without censorship of their mail. Additionally, they were not told what was happening to them or the consequences of the treatment imposed on them.

In the past, patients within an institution experienced a double limitation on their rights—one created by their disabilities and the other by the inherent organization of an institutional system. Even now, the prevailing atmosphere in many hospitals and especially psychiatric facilities perpetuates dependency and helplessness (Goffman).

While the actual disabilities that require institutional care limit a patient somewhat, the prejudging of his or her capacities by the staff may constitute an even greater obstacle. Even at the most enlightened institution, there will inevitably be a strain between the needs of the individual to live a life free of outside control and the institution's need to deliver care efficiently and effectively. Within a mental-health institution or any long-term-care facility, such organizational factors can be dehumanizing and promote frustration, regimentation, and despair. In addition, the stigmatization of mentally ill patients throughout history has seriously hampered attempts to protect their rights, meet their clinical needs, and advance their basic human wants.

Right to Refuse Treatment

The right to refuse treatment in many ways encompasses virtually all other rights of patients and raises fundamental questions as to the extent of control that can be exerted by a treater over a person who may not wish to participate in treatment. The issues raised by this right include the right to privacy, personal sovereignty, inviolability of one's thoughts, freedom from harm, freedom from cruel and unusual punishment, and the issue of the least restrictive alternatives to institutionalization (Perlin, 1979).

From the legal perspective, the right to refuse treatment arises from a composite of postulated constitutional sources including the constitutional right to freedom from harm and the constitutional right to privacy. While the courts and legislatures in recent years have been active in assuring patients the right to refuse such intervention as electroconvulsive therapy and psychosurgery, they have been slower to recognize the right to refuse psychotropic medication (Clayton).

Many individuals with mental illness wish to avoid psychotropic medication because of the potential side effects, which range from merely unpleasant (dry mouth, tiredness, blurry vision) to permanent and disfiguring (tardive dyskinesia, involuntary muscle movement). In addition, some mentally ill patients refuse medication not for the side effects but because the medication works well and therefore forces them to surrender the positive defensive adaptation of the psychotic state. Such adaptations may include an increased sense of importance and power, an ability to shut out problems that exist in the real world, and the support offered by hospitals and physicians (Appelbaum, 1988).

In various jurisdictions, including Massachusetts (Rogers v. Okin, 1979), New York (Rivers v. Katz, 1986), New Jersey (Rennie v. Klein, 1978), and the nation (Washington v. Harper, 1990), mental-health attorneys have sought to expand and clarify issues related to the right to refuse treatment, especially medication. Among the issues examined have been questions such as the right to protect all mental processes (thoughts, feelings, beliefs) from governmental interference; the right to protect autonomy over one's own body; the effectiveness of involuntary treatment versus voluntary treatment; and the questions of whether the potential benefits of drug treatment are worth the risks and who should be permitted to make this decision (Perlin, 1979).

The courts in the cases cited above sought to establish various procedures to protect patient autonomy and decision making in refusing antipsychotic medication. While these court decisions and subsequent legislative statutes have attempted to make the right to refuse treatment a legal and clinical reality, recent studies have revealed serious practical complications in applying these principles. One such study examined the assumption by the courts that patients' refusals of treatment are based on autonomous decision making. The study concluded that for most patients the decision to refuse psychotropic medication is a manifestation of their illness and does not reflect autonomous functioning or consistent beliefs about mental illness or its treatment (Schwartz et al.).

A study done by Paul Appelbaum noted that while refusal of treatment was not uncommon, ultimately most of the patients received treatment during their hospitalization(1988). Some clinicians have studied the cost of implementing court-mandated protection programs in the wake of the Rogers decision. On the basis of the studies' results, these clinicians have concluded that from the economic perspective, such programs are not cost-effective (Schouten and Gutheil). Furthermore, some authors have noted that the right to refuse treatment may infringe on the constitutionally based right to treatment for involuntarily committed mental patients (Blais). Thus the battle continues to be fought. On one side is concern for patients' autonomy and for protection from intrusive and potentially dangerous procedures. On the other side is concern for the clinical needs of patients and the necessity of interventions that can restore them to mental and physical freedom. The future evolution of this right will need to take into consideration not only legal and psychiatric perspectives but also the reality of the consequences of court intervention.

Right to the Least Restrictive Alternative to Hospitalization

A third important right that has received increasing judicial and psychiatric attention is the right to the least restrictive alternative to hospitalization. Many mental-health departments have seen deinstitutionalization as an effective way to reduce the cost of mental-healthcare; unfortunately, clinical services have not always followed patients to their communities.

The trend toward community-based services (least restrictive alternative to hospitalization) was initially heralded as the answer to improved quality and more responsive services. However, it has only partially addressed the need to protect mental patients' rights in the community. In place of the neglect by large institutions, many ex-patients now suffer from the despotic control of boardinghouse managers; in place of "voluntary work with token rewards," they now face long hours of inactivity; in place of even rudimentary treatment plans, they now receive larger doses of tranquilizers administered by untrained persons. These patients also face the continuing threat that unless they conform and follow the rules, they will be rehospitalized (Kopolow, 1979). While community-based services are less restrictive than institutional care, services are only as good as a community is willing to make them.

In the case of Dixon v. Weinberger (1974), Judge Aubrey Robinson ruled that patients in the District of Columbia have a statutory right to treatment in the least restrictive alternative to institutionalization. Responsibility was placed on the District of Columbia and the federal government to prepare a plan to identify and transfer patients to newly created community facilities. It is significant to note that twenty years later, the court's orders still have not been fully implemented. This case clearly shows the limitation of the courts in establishing rights when a community is resistant to, or incapable of, compliance. Another important judicial decision that has relevance to least restrictive treatment is O'Connor v. Donaldson. In this decision, the court acknowledged that states have a legitimate interest in providing care and assistance to patients, but it also declared that the patients' preferences should be recognized as well:

The mere presence of mental illness does not disqualify a person from preferring his home to the comforts of an institution. Moreover, while the States may arguably confine a person to save him from harm, incarceration is rarely if ever a necessary condition for raising the standards of those capable of surviving safely in freedom. (O'Connorv. Donaldson, 1975, p. 575)

The court's movement toward a standard of ability to survive and the expectation that the least drastic means of treatment will have to be used put increased pressure on communities to develop an adequate range of services. To have such a range of services, however, requires commitment of resources that, as the Dixon case so clearly pointed out, may be slow in coming. The right to the least restrictive alternative will become meaningful only when communities invest adequate resources to develop such alternatives and provide mechanisms such as patient advocates to protect and advance patients' rights within the community or within an institution.

Advocacy

Advocacy has many meanings, depending on the interests and priorities of the various groups using it: mental-health professionals, consumers, attorneys, citizens' organizations. In its classic sense it means "to summon to one's assistance, defending, or calling to one's aid." The present-day connotation of conflict or antagonism is not inherent in the basic concept of advocacy, but results from the manner in which some advocates pursue their duties.

The mentally ill, as noted previously, suffer from prejudice and stigmatization that make it difficult for them to advocate their own causes. In addition to these factors, the complexity of the support and treatment programs and the need for change agents in what is essentially a conservative system make the need for advocates especially important. Advocacy, as related to patients' rights, is the responsibility of many individuals and professionals, including lawyers, psychiatrists, social workers, and concerned citizens. While it is obvious that it is the responsibility of the legal profession to advocate for legal rights of patients, the term also has other useful meanings within the mental-health service delivery system. After pure legal rights have been established and attorneys are available to patients to ensure their protection, other issues remain that cannot and should not be resolved through the legal system. Such issues, including staff attitudes, environmental conditions, and alternative treatment services, which influence the quality of the day-today life of mental patients, can be more effectively dealt with through administrative and legislative actions.

It is clear that no one approach or even one professional group can perform all the necessary tasks of mental-health advocacy. Advocacy functions can be divided into three broad categories:

Education and training of hospital staff regarding the nature of patients' rights and the best way to assure their protection.
Establishment of procedures to allow the speedy resolution of problems, questions, or disagreements that may or may not be legal rights. Such procedures would enable quick and efficient resolution outside the courtroom of legal and nonlegal rights issues.
While functions (1) and (2) can be properly handled by appropriate state agencies, a final category requires the use of independent outside lawyers and agencies: provision for independent and readily available legal support when it is necessary to litigate for protection of patients' rights after internal procedures have failed.

A major controversy in advocacy is whether the predominant emphasis should be on internal or external rightsprotection programs. An external advocacy program system would be implemented by individuals who are totally independent of the mental-health system. An internal advocacy program would be implemented by employees of the service system. Arguments for external programs relate to the concept that the advocate is ultimately loyal and responsible to the client. An advocate who is an employee of a department or agency of state government may have divided loyalty. An alternative perspective is that not all state employees are equally subject to that conflict—for example, someone working in an independent section or agency of the state government.

Internal rights-protection or advocacy programs, however, frequently tend to be highly efficient in solving complaints about daily living and in planning for future patients'rights needs. They have easier access to patient records, can participate in program policy development, have a more collegial relationship with administrators that engenders trust and greater cooperation, and have the ability to identify problems to be corrected without outside pressures or publicity. Unfortunately, such programs suffer from the double danger of co-optation and replacement at the discretion of administrators.

An external advocacy program can use persuasion, and when persuasion fails, litigation is always a backup position. Such a program can bypass administrative changes for quick action; however, court cases may move slowly. Therefore, while external advocacy may have a limited range of action, it nonetheless can be powerful and decisive in producing change in a system now receptive to patients' rights protection. This analysis of internal and external advocacy programs clearly illustrates a patient's need for the availability of both programs. Such comprehensive advocacy programs can go far in assuring that patients'-rights concerns do not become mere rhetoric or window dressing, but are permitted to make substantive changes necessary to create a more responsible mental-health system.

Conclusion

In answering the question "What rights do mental patients have?" it is important to go beyond judicial decisions, administrative actions, or legislative statutes, and look at the status of the mentally ill in American society. The rights of mental patients have historically been disregarded and denied. The mentally ill were frequently viewed as incompetent to make decisions, and society's concern was to place them in institutions where they would cause neither themselves nor others harm and where they might receive treatment for their conditions.

The patients'-rights movement, made up of civil-rights attorneys, enlightened mental-health professionals, and former patients, has waged a struggle in courts, in legislatures, and in local communities to stop patient abuse, end stigmatization, increase needed community services, and empower patients to exert their full civil rights. Major patients'-rights litigation in the areas of right to treatment, right to refuse treatment, right to least restrictive alternatives, and right to liberty have led to increased recognition of the existence of these rights. But it is clear, when one examines the plight of the mentally ill down through history, that "something else" is needed if there is to be no recurrence of the cycle of abuse, exposé, improvement, neglect, and abuse again.

This "something else" that can safeguard patients' rights is the advocate. Mental patients already have extensive rights under the Constitution. The problem is not simply granting or recognizing rights but protecting them. Only through the continuing efforts of the advocates will the mentally ill truly have the rights enjoyed by other citizens. In the case of patients, as in the case of other citizens, "the price of freedom is eternal vigilance." The advocate provides the vigilance that helps assure that the legal rights, human wants, and clinical needs of the mentally ill are protected and promoted.

louis e. kopolow (1995)

bibliography revised

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II. Mental Patients' Rights

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