This Date in UCSF History: Should Mental Health Patients Have Right to Refuse Treatment?

Originally published in Synapse on January 19, 1978.

Do mental patients check their constitutional rights at the hospital door? Do people whose ability to reason is doubted still have the right to refuse treatment when no emergency exists? 

Should psychiatrists be the sole arbiters of what is in a patient’s “best interest,” or do patients themselves have a stake in determining that? 

Simply put, does the law outside a mental hospital apply inside as well? 

These are among key questions being raised in a landmark civil rights trial now underway in U.S. District Court in Boston. 

The case, known as Rogers v. Okin, began Dec. 8 and is expected to last through February. 

A nonjury trial, it is presided over by federal judge Joseph Tauro. Rogers v. Okin is the nation’s first class action suit on the right of mental patients to refuse treatment — now the cornerstone of a nationwide movement on mental patients’ rights. Brought by seven present and former patients at Boston State Hospital (Rubie Rogers is a patient, Robert Okin is the” state commissioner of Mental Health), the suit charges 15 doctors with having forcibly medicated or secluded patients in non-emergencies during 1974 and part of 1975, violating both state law and their constitutional rights.” 

Describing such practices as “assault and battery” and “false imprisonment,” the plaintiffs seek damages of $1.2 million and the permanent extension of an injunction (in effect since April 30, 1975) prohibiting such practices. 

While state laws vary on the rights of mental patients, Roger v. Okin should set important precedents for defining the constitutional rights of mental patients nationally. If, for example, the outcome affirms the right of mental patients to refuse treatment, it would radically alter the traditional relationship between doctor and patient in which patients have little or no legally recognized role in determining treatment. 

Richard Cole, Robert Burdick and Clyde Bergstresser, attorneys for the plaintiffs, plan to introduce many issues of broad applicability, some of them quite new. 

Among them are: 

Does the use of mind-altering drugs violate the First Amendment by interfering with the right to formulate as well as express ideas? Does it violate the right to privacy? 

Is involuntary treatment not only possibly unconstitutional but antitherapeutic as well? 

Does it work against the feelings of independence and self-respect that treatment should foster as preparation for patients returning to the community? 

Is assaultive behavior, for which patients are restrained, sometimes caused by the hospital atmosphere? Is hospitalization making the patients sicker? 

What is the psychological effect on patients of forcing unwanted chemicals into their bodies? 

Does the right to treatment preclude the right to refuse treatment, or are the two rights compatible? 

The seclusion rooms where the plaintiffs charge they were kept in nonemergency stand six-by-12 feet, are locked and feature a mesh-covered window with a bare lightbulb left on continually. 

They contain only a plastic-covered mattress on the floor, no toilet, and are described as stinking of urine and feces. The scantily clad or nude patients are allowed no contact with other patients, no reading or other materials, no exercise. 

The medications at issue are powerful anti-psychotic drugs that constitute the major treatment at many mental hospitals nationwide. 

While advocates point to their effectiveness in “reducing anxiety” and “reestablishing organized thought processes,” opponents note the many possible side effects, including blurred vision, jerking of the limbs, inability to concentrate, drowsiness and difficulty in swallowing. 

Some, as in the condition tardive dyskinesia — a disease of the nervous system that damages the brain — may be irreversible. In his opening statement to the court, Assistant Attorney General Stephen Schultz (who heads the defense team) denied that any of the doctors had either medicated or secluded patients against their will except in emergencies. 

He cited numerous violent incidents on the part of the plaintiffs, ranging from setting themselves on fire to holding a knife to the throats of other patients. 

Under the circumstances, he said, actions (like shouting) that might seem quite harmless in themselves were, in fact, a sign that a patient was going out of control.

Staff had to intervene quickly. Schultz expanded the definition of psychiatric emergencies (a key issue) by noting that they “can be continuous.” 

Citing the inadequate staffing and resources on the wards (a matter over which the’ defendants had no control), Schultz asked the court to keep in mind that alternatives to medication and seclusion were not always available. 

Working “under very trying conditions,” handling patients who were “the most acutely psychotic in the Massachusetts mental hospital system,” the doctors, according to Schultz, not only managed to cope but did, in fact, help many of the plaintiffs to improve. 

In Boston, where one institutionalized mental patient killed a doctor in 1973 and where busing tensions led to an increase in admissions, Schultz suggested that the doctors “should be commended” rather than criticized. 

The defense has also taken the position (in pretrial memoranda) that many involuntary patients “cannot acknowledge their need for treatment, and frequently desire subconsciously the very medication and treatment they outwardly reject.” 

They conclude that no constitutional right exists to refuse medication in a state mental hospital. In a friend-of-the-court brief, Harvard Law School professor Alan A. Stone contended that drug treatments had vastly improved conditions in the nation’s mental hospitals and that legal activities supporting the rights of mental patients to refuse treatment “have raised all sorts of complicated legal questions” that have helped lead to “payoffs and terror” at Boston State Hospital. 

But Robert Plotkin, attorney for the Mental Health Law Project in Washington, D.C., which is assisting the plaintiffs, contends that, “We are not talking about totally eliminating drugs in mental health treatment; we are talking about controlling a long list of well documented abuses against mental patients. Treating patients like human beings will not interfere with mental health treatment, it would enhance it.” 

Early testimony has focused on Donna Hunt, who spent more than 2,000 hours in seclusion during a 16-month period. Her attorneys charge she was frequently medicated against her will as “punishment for ‘undesirable’ behavior or speech and as part of a behavior modification treatment plan.” 

Mildly retarded, the 16-year-old patient, although never diagnosed as “psychotic,” was placed on an adult psychotic ward where staff lacked training. 

A key witness has been Dr. John Szylk, a second-year resident psychiatrist directly responsible for Hunt’s treatment. 

Under examination by her attorneys he conceded that: 

— He had no training in the use of seclusion or antipsychotic drugs on the retarded. Yet he had never sought consultation with experts, including one available within the same hospital. 

— He had never read Hunt’s entire record, including reports by his immediate predecessor that she showed symptoms of tardive dyskinesia from the drug Mellaril. Szylk continued the dosages. 

Dr. Szylk defended his competence, nevertheless, “to formulate a treatment program” for a retarded adolescent. He stated he “could not have conceived of a better treatment program” for Hunt even if more resources had been available. State law authorizes seclusion only where there is “the occurrence of or serious threat of extreme violence, personal injury, or attempted suicide.” 

Hunt was often secluded for refusing to stay in her room, swallowing flip tops from soda cans or scratching her arms with them. 

While Szylk asserted such actions indicated Hunt was either out of control of suicidal, the other early witnesses called (aides or psychologists sympathetic to the plaintiffs) contended that Hunt’s bizarre action