BY ROBERT B. SIPE and LUTHER LANDON
Civil rights for the mentally ill
ONE FLEW Over the Cuckoo's Nest was more than an academy award winning movie. The film levels poignant criticism at some of the more questionable practices of mental hospitals and explores the fear towards psychiatrists and the stigma society has placed on the mentally ill. This stigma becomes all the more powerful with the realization that one out of every ten Americans will at some time need treatment for a "disease" called "mental illness."
In the Illinois legislature, attention is also focused on mental health and the rights of those receiving treatment. Extensive legislation to revise the state's 1967 mental health code has been in the hopper since 1977. The legislation was based on recommendations by the Governor's Commission for Revision of the Mental Health Code, appointed by Gov. Dan Walker in 1973. The bills were introduced shortly after Gov. James R. Thompson took office by a bipartison group which included Sens. Dawn Clark Netsch (D., Chicago), John J. Nimrod (R., Skokie), Jerome J. Joyce (D., Reddick), Jack Schaffer(R., Cary), John B. Roe (R., Rochelle) and Vince Demuzio (D., Carlinville). The legislation was assigned in March 1977 to the Senate Judiciary I Committee chaired by Sen. Richard M. Daley (D., Chicago), and the fears were that it would stay there. But a proposal by Sen. Netsch to put the bills in a special joint Senate-House hearing committee was approved at the end of the 1977 session. Taking on the role of advocate for mental health legislation, Daley teamed up with other joint committee members, including Sens. Netsch and Schaffer and Rep. Elroy C. Sandquist, Jr. (R., Chicago). With Daley's backing, the legislation with amendments recommended by the joint committee got to the Senate floor and passed.
Civil libertarians and concerned lay people throughout the nation a re involved in a growing controversy which surrounds the treatment of the mentally ill and the power of psychiatry over our daily lives. The debate hinges on the alleged arbitrariness with which psychiatrists are able to deprive individuals of their civil rights and on the nature of commitment procedures. Is involuntary commitment a way to protect individuals from the potential consequences of their illness or is it, as some would argue, a form of social control? Another area of disagreement is the effectiveness of mental health treatment itself. Over the last 20 years the use of psychotropic drugs has enabled many persons to leave mental hospitals and lead "normal" lives in society, and there has also been great development of behavioral therapies. But, abuses have come with the benefits, and many mental health professionals now ask a basic question: Can certain biological and behavioral therapies be considered "treatment" at all? Central to both of these questions is the issue of "informed consent."
The doctrine of informed consent protects the patient's right to determine the type and extent of treatment. Patients must be adequately informed as to the nature of the proposed treatment so they will know the risks involved and the likelihood of success. While many proponents of informed consent feel this is a moral condition underscoring all patient-physician relationships, it obviously poses significant problems when applied to the mentally ill. The basic question is whether a "mentally ill" person is capable of giving informed consent with respect to impending treatment procedures.
The amount of information required for such decisions, the age of the person, his or her mental capacity, and admission and guardianship status are all important factors which bear on the ability to give informed consent. Given the extensive debate among psychiatrists and others over the potential benefits and risks of various forms of treatment such as Electro-Convulsive Therapy (ECT), it is possible that no consensus will be reached as to what constitutes the necessary amount of information for making an informed consent.
In addition, there is the question of whether an involuntarily confined person whose overriding concern is to leave the institution can give "freely voluntary" consent. In some cases, the subtle and not so subtle pressures of the attending psychiatrists, the patient's
ROBERT B. SIPE and LUTHER LANDON
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family and/or the community render the "consent" less voluntary — and in some cases involuntary. This is particularly important if a patient feels his or her release is contingent upon cooperation with treatment. Thus, whether or not the basic conditions for informed consent — freedom from coercion, adequate information and ability to understand — can prevail for those individuals designated "mentally ill" is highly debatable.
Finally, there is controversy in courts and legislatures throughout the nation over the concept of "right to treatment." In the field of mental health law, right to treatment is a two-edged sword. Many psychiatrists and other mental health professionals oppose court interference in the interest of civil liberties because they feel such interference impinges upon the patient's right to treatment and the physician's duty to give it. The courts, on the other hand, have claimed increasing authority to monitor mental health facilities to insure that the right to treatment is not being denied.
In 1973, partly in response to these conflicts, Gov. Dan Walker appointed the Governor's Commission for Revision of the Mental Health Code of Illinois to recommend revisions to the state's 1967 mental health code. The concern of the commission centered upon providing humane and effective treatment while simultaneously protecting the patient's civil and legal rights.
In general, civil libertarians applauded the efforts of the commission when its first report came out in November 1976. But many Illinois physicians and psychiatrists were disturbed by some of the proposed revisions which they felt represented an unnecessary intrusion of the legal system into the therapeutic relationship. Critics contended that proposals to protect the civil rights of mental patients and the excessive legal regulation of treatment procedures clearly subordinated the treatment of mental illness to "a never-ending series of adversarial confrontations" between patient and doctor.
Working with the commission all along was Walker's appointee, Dr. LeRoy P. Levitt, director of the Department of Mental Health and Developmental Disabilities (DMHDD). But it was newly elected Gov. James R. Thompson and his appointee, Dr. Robert deVito, who had to respond to the commission's report. DeVito asserted that the commission "went too far in transferring clinical authority and responsibility to other parties, such as hearings officers and the like." DeVito's response was to appoint a task force to analyze the commission's work.
Although not in total disagreement with the commission, the task force report came down hard on some of its key proposals, causing consternation among some commission members. For the department, however, the report was a way to get further study and negotiation. At the time, in the spring of 1977, some 26 bills based on commission proposals had already been introduced in the Senate.
At present, top echelon staff at the DMHDD are much more positive about the revisions under consideration in the legislature. "The original criticism was that the advocacy proposal represented an unnecessary intrusion into clinical treatment of mental illness. That has been ameliorated," said John Ryan, former legislative liaison for DMHDD and one of the authors of the department's task force report.
"Amelioration" took place this spring after several months of study and five days of hearings by the Special Joint Committee on Revision of the Mental Health Code, chaired by Sen. Daley.
Daley may well be the key for any revisions passed this session. He took a personal interest in revising Illinois' mental health code, and he worked with the original sponsors of the bills in his committee. Without his powerful backing, the bills would have died in committee, Daley's committee sought to mediate differences over the role of the courts, the clinicians and the department, as well as patients and their families.
The key mental health bills passed in the Senate May 25 with the special committee's recommended amendments. The main bill, S.B. 250, sponsored by Netsch, would revise the 1967 Mental Health Code by amplifying and consolidating the rights of the mentally ill and developmentally disabled in public and private facilities. An independent Guardianship and Mental Health Advocacy Commission would be created by S.B. 253 (Joyce and Nimrod). The confidentiality of records involving mental health services would be protected by S.B. 255 (Vince DeMuzio, D., Carlinville; Nimrod and Netsch). By the time the bills came to a Senate vote, sponsorship had changed with Daley taking over as principal sponsor of S.B. 253 and S.B. 255.
What were some of the specific issues in the commission's proposals and how were they amended?
The commission proposed a bill of rights for all recipients of mental health services whether they are inpatients or outpatients. This was endorsed by Daley's committee and is part of S.B. 250. Included in this bill of rights is a new right to refuse treatment; the right of informed consent and the right to treatment are amplified.
The 1967 code is silent with respect to the right of a patient to refuse treatment, and although the DMHDD has a departmental policy recognizing this right, it is not part of the department rules. S.B. 250 would give statutory recognition to the right to refuse mental health or developmental disability services with the condition that the right may be overruled "where the mentally disabled person poses a threat to himself or others."
While the current code requires written consent for certain kinds of treatment, it does not mandate that the patient understand the treatment and its possible consequences. The commission's proposed revision was strengthened by Sen. Daley's committee by specifically mentioning shock treatments. S.B. 250 would require a written and informed consent by all legally competent patients for "electro-convulsive therapy [ECT] or any hazardous or experimental services or psycho-surgery."
The commission recommended that if a patient is a minor or is legally incompetent, informed consent must be obtained by the patient's guardian and subject to the court's approval. Daley's committee agreed.
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Many of the abuses cited as evidence for the necessity of informed consent procedures center on the widespread use of ECT and various drug therapy maintenance programs. The merits and dangers of ECT and chemotherapy as effective and humane forms of treatment remain open to debate, but there is agreement that each treatment has, to some degree, the risk of irreversible side effects which the patient must understand before consenting to treatment.
Critics of the informed consent provision argued that mentally ill patients are not always capable of giving informed consent for the appropriate mode of treatment. They maintained that to make informed consent a right by statute, while desirable in an ethical sense, would only hinder the ability of patients to receive the treatment they need. Many psychiatrists argued strongly for compulsive treatment on the grounds that a patient's right to treatment necessitates a reciprocal obligation by psychiatrists to provide the most effective and humane treatment possible, even against the patient's expressed wishes. They argue that a psychiatrist is in a much better position than either the patient or the courts to assess the treatment needs of a particular patient.
The present code includes the right to "adequate and humane treatment," but does not specify that treatment should be "in the least restrictive environment." The commission's recommendation to add this clause is in S.B. 250. Explaining this right, the commission said, "depending on the specific needs of a person, a less restrictive ward is preferable to one that is more restrictive; a half-way house is preferable to a residential facility; and clinic services are preferable to a half-way house."
The right to the least restrictive treatment has been mandated in several federal court decisions, most notably in 1972 in Wyatt v. Stickney (344 F. Supp. 387) which set up standards for mental health services that have greatly influenced state legislation.
The concept that a good end must be accomplished by the least restrictive means is a major theme of the commission's proposed code revisions and was generally accepted by Sen. Daley's committee. In S.B. 250, the right to treatment would include all patients, even those voluntarily admitted. Adequacy of treatment for this type of patient has not yet been addressed by the courts.
Besides the legal precedents for the least restrictive form of treatment, there is general agreement that prolonged institutionalization is harmful. S.B. 250 amplifies the efforts of the present code to insure that no patient who can be saved is lost in the mental health system.
The commission's attempt to change the standards for involuntary admission was probably the most publicized issue in the mental health code debate. The proposal, which is not in S.B. 250, would have required a "recent overt act" or "significant threat" to prove a person is potentially dangerous and qualified for involuntary admission.
Court opinion on the subject is still evolving. A 1972 federal court decision (Lessard v. Schmidt, 349 F. Supp. 1078) stated that an overt act or threat should be required to justify civil confinement; other courts followed this trend, and the decision has widely influenced mental health law. In 1974 in People v. Sansone (18 Ill. App. 3d 315), an Illinois appellate court agreed that mental illness alone is not sufficient reason to deprive a person of his civil liberties but did not accept the idea that an overt act is required. The commission decided to include the overt act in its definition because a subjective evaluation might be inconsistent or inaccurate. The commission noted that even qualified psychiatrists have not been able to predict with more than 50 per cent accuracy whether or not a person will commit a violent act unless there has been some overt sign of aggressiveness.
The DM HDD task force criticized the commission's proposal because it would distort the definition of mental illness and could deny the right to treatment. Since many mentally disabled people are passive and withdrawn, they would not enter into the treatment system if judged by overt actions. At the same time, equating aggressiveness with mental illness might turn mental hospitals into places where people committing violent or criminal acts are locked up.
Another factor in rejecting the commission's definition was a federal court ruling on April 13 that an overt act is not required to make a person subject to involuntary commitment (Matthew v. Nelson, U.S. District Court, Northern District of Illinois, Eastern Division, 72C 2104 (1978)).
But the joint committee also rejected a sweeping proposal by the Illinois Psychiatric Society, the Illinois State Medical Society and the Illinois Hospital Association. This proposed amendment to S.B. 250 would have expanded the criteria for involuntary admission to include persons whose "capacity to recognize reality or ability to meet the ordinary demands of life" are "grossly" impaired.
The definition recommended by the legislative joint committee chaired by Daley states that a person subject to involuntary admission to a mental health facility must be mentally ill and "reasonably expected to inflict serious harm upon himself or another in the near future." The criteria for admission because of helplessness involves being "unable to care for his basic physical needs so as to guard himself from serious harm." Both of these definitions are more restrictive than the present code which does not require that the harm be "serious."
Both the commission and the joint-committee also deleted from the present definition a clause denying a preadmission exam to people whose mental processes have been impaired by age.
However, the question of involuntary admission was not the only one dealt with by the commission. Besides involuntary admission to a private hospital or a state mental health care facility, there are two others: informal and voluntary.
There is no doubt that the existence of informal and voluntary admission has helped remove the stigma from seeking professional psychiatric treatment. Both types of admission allow any troubled person 18 years or older to seek help without the loss of dignity involved in judicial committment.
The difference is that the informally admitted patient is free to leave the hospital almost immediately, while
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under voluntary admission there is a five-day waiting period after which the patient presents a written request for discharge. (In both types of admission, however, patients judged dangerous or helpless may be subject to commitment procedures.) In formal admission, which is modeled after admission procedures to a medical hospital, is used in private mental hospitals but is very uncommon in state mental health facilities. Only 54 or 0.2 per cent of admissions were informal in fiscal 1977.
Debate centered around the commission's proposal to declare informal admission the preferred form and to require documentation of the reasons for denying it. The DMHDD countered that this could interfere with the patient's right to treatment. In state facilities, where a higher proportion of patients are psychotic and where many have a poor understanding of psychiatric care, the waiting period provided by voluntary admission is needed. In addition, the DMHDD said that an increase in informal admissions could result in higher discharge and read mission rates. Daley's committee deleted the clause specifying informal admission as the preferred form but retained the documentation requirement in S.B. 250.
Voluntary admission may be seen as the legal middle ground between the autonomy afforded to the informally admitted patient and its relative absence for the involuntary or court-committed patient. Voluntary admission is the most common form of admission in state mental health facilities, accounting for approximately 16,955 or 71 percent of admissions in fiscal 1977. It gives doctors and hospitals some control over the length of a patient's stay and does not involve the paperwork required by involuntary admission.
A revision proposed by the commission to shorten the waiting period from five to three days was not accepted by Daley's committee. The rationale for the shorter period was to encourage more voluntary admissions, but DMHDD estimated that three days was not enough time to evaluate new patients. Others have argued that some medications will not take effect in so short a time, that fewer patients would rescind their requests to leave and, judges — because of an increase in involuntary commitments — would have to hold hearings in state facilities more often.
Another commission proposal that remains in S.B. 250 prohibits using the threat of involuntary commitment to persuade a person to opt for voluntary admission. Many patients who are admitted voluntarily arrive at the hospital in some form of custody and do not realize (and may not be told) of their rights and legal options.
Involuntary admissions include emergency admissions by a patient's family or friends, admissions under court order for detention and examination and admissions on the certificate of a physician. In the latter case, like McMurphy in Cuckoo's Nest, informal and voluntary patients can be certified by a psychiatrist when they request a discharge if their psychiatrist believes they fulfill the criteria for involuntary admission. In fiscal 1977, 6,816 or 28 per cent of admissions in state mental health facilities were involuntary.
Under the present code, involuntary admissions require a detailed "petition for hospitalization" (which can, in an emergency, be filled out by anyone 18 or older) and two "certificates of need for hospitalization" completed by two physicians, one of whom must be a psychiatrist. If the petition and the first certificate are not completed within 24 hours, the patient must be released. The second certificate must be completed within the next 24 hours.
All patients admitted involuntarily are entitled to a hearing at which a judge informs them of their rights to counsel, to request a hearing, to trial by jury, to have a lawyer present, to present evidence and to cross examine witnesses. At this informal hearing, the patient is asked the reasons for admission, and the judge determines whether there is probable cause that the patient is in need of mental treatment and/or hospitalization. At the formal hearing, the patient is either released or found subject to involuntary admission. In the latter case, as in cases where the patient declines a hearing, he or she would remain in the hospital for treatment.
A major change in the involuntary admission process proposed by S.B. 250 would allow qualified clinical psychologists, psychiatric nurses and social workers to complete one of the certificates for hospitalization provided the other is filled out by a psychiatrist. In addition, qualified clinical psychologists could fill out the second certificate if the first is completed by a physician or a psychiatrist. Opposed by the Illinois State Medical Society and the Illinois Psychiatric Society, the revision reflects a trend away from medical dominance of the mental health profession.
A "Miranda" type warning already in effect at DMHDD would also be mandated by the commission proposal included in S.B. 250 for all mental health facilities in the state. It would require that before a person can be examined for certification, he must be informed that he doesn't have to talk to the examiner and that any statement he makes may be used in court to determine his admission status.
Once a patient is admitted, judicial review processes are provided in the current code to protect the patient's "right to treatment" and to detect unnecessary involuntary hospitalization. The disposition of each involuntary patient is monitored at 60-day intervals. If the hospital fails to file an application for continued hospitalization by the 61st day, the patient must be unconditionally discharged.
Several commission proposals based on the right to treatment in the least restrictive environment would have expanded the authority of the courts over the treatment and placement of the mentally ill. The most controversial of these, which was amended, out of S.B. 250, would allow the court to order DMHDD to purchase programs or services for an involuntarily admitted patient if the court found that no suitable treatment was available. The commission argued that this would be an affirmative mandate of the patient's right to treatment. Others saw it as an administrative timebomb.
Also getting strong criticism from the DMHDD task force was a commission proposal requiring the filing of a preliminary treatment plan for a patient with the court. The commission felt this was needed to be consistent with the commission's requirement that the court must order the least restrictive form of treatment. This stayed in S.B. 250. The current code directs the court to "consider the alternative forms of care . . . including, but not limited to hospitalization" (Ill. Rev. Stat., 1975, Ch. 9 1/2, sec. 9-6). S.B. 250 directs the court to order the least restrictive treatment alternative, placing more emphasis on community outpatient care. Deleted was a proposed revision that would require the court to give preference
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to a hospital close to a patient's place of residence and not to order hospitalization at all if the hospital could not provide adequate treatment.
All of these proposals get short shrift from the DMHDD and many mental health professionals who saw them as interference by the court in clinical matters.
Sweeping changes on which there was general agreement was a new section governing the admission of children to mental health facilities and a new section providing for the admission, transfer and discharge of the developmentally disabled. Both are incorporated in S.B. 250. Under the 1967 code, admission of minors to mental health facilities is lumped in with the admission of adults. Since a minor is under the charge of parents or guardians and cannot withhold consent to admission, there is really no such thing as voluntary admission for a minor. The provisions in S.B. 270 would provide more stringent admission standards for minors as well as rights to review and to object. Abuses under the 1967 code came to light in 1972 when the Cook County Circuit Court found evidence that children who were wards of the state had been signed into public mental health facilities by the Department of Children and Family Services "not because they needed hospitalization but because the state had no proper homes for them."
In the view of those who worked on the commission, external review and legal advocacy were the keystone of the proposed code. Without them, the code would be unable to bridge the gap between what is supposed to happen and what actually occurs in mental health facilities. "Mental health decisions are usually made in an atmosphere in which the decision is final and is not reviewable," said Ronald Rock, commission staff member. "The person who makes the decision has to justify it to himself but knows he will probably not have to justify it to anyone else. The commission wanted a number of natural points to review all decisions. Each decisionmaker would know his decision is reviewable, that he might have to justify it to society."
One natural point of review is when a patient or his guardian or someone else objects to his admission, transfer or discharge. The commission proposed that a special hearings officer appointed but not employed by the DMHDD be given authority to review and investigate objections and complaints on request. The DMHDD felt that clinical review teams already working in its facilities had the training needed to do the job and could do it in a less formal way with less trauma to the patient. In the amended S.B. 250, the independent hearing officer is replaced by a "utilization review committee" composed of DMHDD clinical staff who are already working as review teams in state mental health facilities. Accepted in principle, administrative review would be kept within the department. Daley's committee agreed.
Legal advocacy was a key issue in the question of outside review. Under the present code, patients facing commitment hearings have the right to counsel and the services of a public defender or court-appointed attorney. But in practice, the public defender system does not have the resources or the expertise to devote itself to commitment hearings, and in some rural counties there is no public defender available for the mentally ill. The result is that commitment hearings in which a person's civil liberties are at stake are often five-minute quickies with no expert advocacy available for the patient.
However, the drastic decision to commit a person against his will to a mental health facility is not the only type of decision that the commission felt needed outside review. And legal advocates were not the only kind of help the commission recommended. It also proposed a statewide system of volunteer lay advocates to investigate complaints on a more informal basis. Matters that could be addressed by both the legal and lay advocacy systems would include complaints about denial of admission, transfers to other facilities — especially more restrictive ones — unwanted discharge from an institution, as well as the use of certain kinds of treatment such as seclusion and restraint. According to the commission, all of these issues have been the subject of much concern by patients and their families as well as many professionals. In addition, the commission felt that all patients, including minors, should be informed on admission to a mental health facility of their right to get in touch with both legal and lay advocates and how to do it.
A third type of service, recommended by the commission and also favored by the DMHDD, was limited guardianship for both the mentally ill and developmentally disabled persons. Under the present code, a person who needs some form of guardianship must be declared legally incompetent and lose all his civil rights. The commission proposed a form of limited guardianship which is tailored to the needs of the person and does not involve an unnecessary loss of rights.
The major victory for the commission was the decision of Sen. Daley's committee to retain the controversial proposals for legal aid and independent review. (Acceptance of limited guardianship was not so much at issue.) Amendments proposed by the committee changed the form but not the essence of commission proposals for these three services. S.B. 253 would create a Guardianship and Mental Health Advocacy Commission which would consolidate into one the three state agencies originally proposed by the commission to provide legal aid, lay review and limited guardianship. As proposed in S.B. 253, the 12-member advocacy and guardianship commission would be appointed by the governor, the legislature and the state Supreme Court and would direct the activities of its three divisions: a legal advocacy service for the mentally ill, a human rights authority — consisting of regional boards staffed by lay volunteers — and the office of state guardian.
Originally, the DMHDD task force opposed the concept of legal aid and outside review, saying it would be an expensive duplication of already existing services. However, the department seems willing to live with it now. Developmentally disabled persons already have special advocacy services under an executive order issued in October 1977 by Gov. James R. Thompson. The services were mandated by federal legislation, and there is a possibility that the federal government will also require the same kind of services for the mentally ill in the near future.
In general, those who had worked on the commission and for the legislation were pleased. As Ronald Rock said, "All the changes we proposed are based on having outside legal advocacy. You can legislate rights until you're blue in the face, but without the outside review, it won't get you anywhere."
Passage of the proposed code will not answer deep, underlying questions
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about the right to treatment and the right to liberty and the nature of mental health illness itself. Nor does the proposed code address the crucial problem of funding mental health services. But it does move a long way in the right direction on civil rights for the mentally disabled. It would help prevent tragedies similar to the stories recounted in One Flew Over the Cuckoo's Nest. Finally, those who worked on the proposed mental health code struggled with a basic moral and political dilemma: How can society avoid undesirable ends without employing undesirable means? The spectre haunting the mentally ill is but a reflection of the spectre haunting us all in modern society.
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