hill country observerThe independent newspaper of eastern New York, southwestern Vermont and the Berkshires




Drugged by court order

Patients, advocates seek alternatives to forced psychiatric medication


Contributing writer


For Sarah Launderville, the idea of forced drugging brings back horrific memories.
Launderville, the executive director of the Vermont Center for Independent Living, told a legislative panel earlier this year how she was subjected to years of sexual violence by her stepfather – “someone who was supposed to care for me … and I was supposed to trust.”
“On occasion,” she recalled, “my stepfather used drugs to calm me so he could rape and torture me with his friends.”

So when the emotional damage from that abuse later landed her in a hospital psychiatric ward, the experience seemed disturbingly familiar: She was confined against her will, at times forcibly restrained, and then given medication against her will.

But the psychotropic medications did not treat her emotional trauma, she said, even if they sometimes led her to behave the way others wanted.

“The hospital personnel kept saying, ‘Trust us. We are here to help you,’” Launderville recalled.
“You can see,” she explained, “how that would be re-traumatizing for someone assaulted over and over by someone I was supposed to trust.”

Launderville was among a series of former psychiatric patients and advocates who spoke out against a bill Vermont legislators were considering this year to streamline the state’s process for involuntary psychiatric commitment and medication.

Despite their testimony, the bill ultimately passed both houses on voice votes and was signed into law in June by Gov. Peter Shumlin, who had strongly supported the measure.

On the other side of the debate from Launderville were hospitals, psychiatrists, the state Department of Mental Health and the state affiliate of the National Association for Mental Illness, a group representing patients’ families.

Jill Olson, vice president for policy and legislative affairs for the Vermont Association of Hospitals and Health Systems, said the legal changes approved by the Legislature will speed the process of getting treatment for patients with serious mental health issues. Where the state previously required separate court orders for an involuntary hospital commitment and for involuntary medication, the new law allows both issues to be consolidated into a single judicial review in many cases.

“Our physicians felt they were depriving patients of the treatment they believe they need, because the court process takes a long time,” Olson explained.

Family members of psychiatric patients also lobbied for the bill, known as S.287. In legislative testimony, one parent told of an adult son who, after being involuntarily committed to a hospital, refused medication and then was kept for more than a week in a bare room in the emergency department – with no treatment, and with no television, books or anything else to occupy his time – until a court order for involuntary medication could be obtained.


In the hands of a judge
This year’s debate in Vermont is just a sampling of a larger national conflict over forced psychiatric medication – one in which some patients and their allies have been calling, often without success, for stronger protections that would give them more autonomy and allow them to reduce or refuse drug treatments.

Although the focus in Vermont lately has been on patients admitted to hospitals after being deemed a danger to themselves or others, many states including Vermont also have programs that provide for court-ordered outpatient treatment with psychiatric medications.
In New York, the passage of Kendra’s Law in the 1990s set up a system under which more than 3,000 people statewide are now receiving court-ordered psychiatric drugs on an outpatient basis. Once drawn into this system, many patients continue to be medicated for years, often with debilitating side effects.

In Vermont, state Sen. Jeanette White, a Windham County Democrat who was one of the co-sponsors of this year’s involuntary medication bill, stressed that the state’s new law makes no judgments about whether psychiatric drugs are good or bad – or whether they’re needed by a particular patient. The latter determination, she said, is made in each case by the judicial system, with input from doctors and patients, who are represented by Vermont Legal Aid.
“We trust judges to make all kinds of decisions,” White said.

Critics of forced medication point out, however, that judges typically give a lot more weight to the recommendations of psychiatric professionals than to the protests of patients whose mental competence is in question.

Jack McCullough, the director of Vermont Legal Aid’s Mental Health Law Project, said the legal bar to obtaining an order for involuntary medication in Vermont is higher than for involuntary commitment to a hospital. The state has to demonstrate a reasonable likelihood that the patient will benefit from the medication and that they don’t have the capacity to make a medical decision.
Even so, he said, the state wins its cases for both involuntary treatment and involuntary medication “a huge percentage of the time.”

In New York, Kendra’s Law also requires a judicial review before a person can be ordered to receive “assisted outpatient treatment,” which almost invariably means a drug regimen. The law was named for Kendra Webdale, a woman who was pushed off a New York City subway platform to her death by a man with schizophrenia who had been turned away from mental health services.

Kendra’s Law allows a judge to require a people with a psychiatric diagnosis – and who have a history of institutionalization and of noncompliance with psychiatric treatment -- to take medication as well as undergo other forms of mandatory treatment as a condition of living in the community. They may be required to attend a designated day treatment program, meet with a particular caseworker or agency or even live in a particular residence.

Since the law took effect in 1999, the courts have granted nearly 12,000 petitions for involuntary treatment in New York, or about 97 percent of the petitions filed. In addition, advocates suggest that many more psychiatric patients submit to treatment directives “voluntarily” under the implicit threat that the more coercive measures of Kendra’s Law could be invoked if they fail to comply.
For those covered by the law, treatment orders come up for renewal annually and may be extended indefinitely.


Hospitals under pressure
In Vermont, this year’s effort to speed up the legal process for involuntary medication in hospital settings was driven in part by fallout from the abrupt closing three years ago of the state psychiatric hospital in Waterbury. The state hospital, a complex that had housed more than 1,700 people in the 1930s, had space for only 54 patients in its final incarnation before it was badly damaged by flooding from Tropical Storm Irene.

The hospital’s closing dispersed its inpatient population, including people coming in for emergency admission, around the state to community hospitals and several private mental health facilities such as Brattleboro Retreat. That put the state’s mental health system under stress and brought to the forefront the issue of legal hurdles to medicating patients against their will, explained Ed Paquin, the executive director of Disability Rights Vermont, a statewide advocacy group with offices in Montpelier and Rutland.

“For years, providers had wanted the process to go faster,” Paquin said.
Paquin, however, spoke out against the push to change the state’s laws, warning that forcible medication may prove harmful in the long run to treating people already suffering from emotional trauma.

“You may speed up something they may need, but you are coloring their relationship with their providers for years to come,” he said. “There is a trauma that is not to be minimized.”
He and other advocates predict the new law will result in an increase in applications for involuntary medication.

Last year, Vermont had 572 involuntary hospital admissions for mental health evaluations. In 445 of those cases, the state went to court to file an application for involuntary commitment to a hospital. But for only 66 of these patients did the state go on to apply for a court order for involuntary medication

Paquin explained that, under the previous two-step process, many patients were either released, stabilized without medications or agreed to take them voluntarily, thereby eliminating the need for a court order.

The pressure on community hospitals is expected to ease somewhat with the opening of a new state psychiatric hospital in Berlin. That facility, which began operating last month, is expected to offer 25 inpatient beds when completed. With state funding, other facilities around Vermont have also added more capacity; Rutland Regional Medical Center, for example, has added a new six-bed psychiatric unit for hard-to-handle patients. Together, these additions will bring the total number of new beds close to the old hospital’s capacity.


Questions of competence
One key issue in the conflict over involuntary medication is the degree to which psychiatric patients are competent to make decisions about their own treatment.

Paquin explained that in Vermont, as in other states, people normally have the right to determine the course of their own medical treatment, and providers must honor each patient’s wishes. But that right is forfeited when a person is determined to lack the mental capacity needed to make informed decisions.

As a result, he and others, including Launderville, recommend that people who foresee the possibility of facing involuntary commitment and medication in the future prepare an advance directive and appoint a health care agent. The directive can specify, for example, what drugs a person is willing to accept or doesn’t wish to take. It can also indicate which facility a patient wishes to be taken to – and which facilities to avoid. But to be valid, the directive must be put in place when the person is considered competent.

Robert Macauley, a physician who directs the Department of Clinical Ethics at Fletcher Allen Health Care in Burlington, argued in written testimony submitted to the state Senate that psychiatric patients often are not competent to make informed decisions about medication because they lack insight into their own condition.

“Many patients – such as those suffering from schizophrenia, or bipolar disorder with psychotic features – deny that they are ill at all, or believe that the ‘mentally ill’ version of themselves is truer to who they really are than the ‘medicated, healthy’ version,” he wrote, going on to acknowledge that some people who are bipolar “are clearly more productive” during manic episodes.

“Psychiatrists, on the other hand, would classify this as a lack of insight,” Macauley continued.
Opponents of forced treatment point out, however, that people with a serious psychiatric diagnosis still have feelings, often to a heightened degree, and they argue that, like anyone else, they are justified in reacting strongly against being held or medicated against their will.

Do drugs equal treatment?

Laura-Nicole Sisson, a young woman from Burlington who spent several years cycling in and out of hospital for psychiatric issues, attended some of this year’s legislative hearings and expressed sympathy for other psychiatric survivors as well as for family members who spoke out.

“A lot of people testifying for the bill were seeing loved ones going through the system,” Sisson said. “They’d end up in restraints and in seclusion until being given involuntary medication.”
People in a psychiatric ward have probably been through some pretty harrowing experiences, she said, and being secluded is dehumanizing when your own humanity is already fragile.
But the bigger problem, she said, is that the current mental health system is failing to meet human needs – a trend she said is made worse by contemporary psychiatry’s focus on medications.

“In my experience, there is not a lot of real treatment,” Sisson said. “The word ‘treatment’ is becoming synonymous with medication.”

Sisson said that when she was hospitalized, she would have benefitted from “regular access to a therapist and productive groups to discuss in-depth the context surrounding what landed me there.”

Instead, she said, she received “symptom- and drug-focused sessions with a psychiatrist, a few minutes of discharge planning with a social worker, and hours upon hours of arts and crafts.”
According to the U.S. Substance Abuse and Mental Health Services Administration, 90 percent of clients in public mental health settings have experienced emotional trauma from incest or other forms of childhood sexual exploitation, physical and emotional abuse, neglect, bullying, disasters or violence.

Sisson spent six years stuck in the mental health system.
“As a survivor of trauma, every time I had something done to me under the guise of treatment that I didn’t want, it made things worse,” Sisson said. “I was re-traumatized. It had me reliving experiences from the past in a more profound way than before.”

She said this retraumatization would lead to a new crisis, and then she would end up in the hospital again, trapped in a vicious cycle.

“What really pulled me out of the spiral was someone seeing me as more than my symptoms and talking to me,” Sisson said. “They asked me, ‘Who are you?’ I said, “schizoaffective disorder and PTSD.’ ‘No, no, who are you? What do you like to do?’ I had pretty much lost track of that. My identity had been consumed.”

Seeking alternatives to drugs

Hospitalization and psychiatric medications need not be the only option for people suffering from severe emotional distress or experiencing extreme states, and advocates interviewed for this story spoke out about the need for more treatment alternatives.

Paquin said the staff at Disability Rights Vermont sees clients who would benefit from a variety of treatment approaches, but he expressed some frustration with the lack of money and other resources to support more alternatives.

“People should have access to a variety of options,” he said. “While the state has made a good effort to support a lot of different approaches, … candidly, it’s not really equal to what we would need.”

And McCullough, who has been representing people facing involuntary treatment and medication since the 1980s, said he has serious concerns about the capacity of the current mental health system to meet patients’ needs.

“If I had power to change things, I would get the system to take much more seriously that we don’t really understand mental illness as much as the system claims we do -- and that the medications do not have the overwhelmingly positive effect as they claim they do,” McCullough said. “There are certain people who benefit. But in the overall scheme, people are not necessarily better off over the long run.”

Amos Meacham of the nonprofit group Pathways Vermont is leading the effort to open one alternative program. The program, called Soteria, will be a recovery residence for people in early episode psychosis. Located in Burlington, Soteria is expected to open by winter or early spring and will follow a non-medical model. The program’s use of psychiatric drugs will be limited and cautious -- and entirely up to clients’ choice, Meacham said.

Soteria Vermont will offer a place for people to explore the meaning of what’s going on with them without anyone dictating what they need to do, he said. The program follows the philosophy of “being with” people experiencing psychosis, rather than “doing to” them, Meacham explained.
Soteria’s non-biomedical model is founded on different principles and assumptions than those at the core of hospitals and mainstream psychiatry. At Soteria, there is no authority telling a person suffering from emotional distress that they must comply with a professional’s directive or adhere to outside protocols before regaining their freedom. The threat of coercion has no place there, and this helps to engender a sense of trust and a greater possibility for healing.

The original Soteria Project was created in 1971 in California by the late psychiatrist Loren Mosher, former chief of the National Institute of Mental Health’s Center for the Study of Schizophrenia, as an alternative to hospitalization for first-time psychosis. Designed as a drug-free environment, it proved to be at least as effective as traditional hospital care at alleviating psychotic symptoms within a matter of weeks.

The original program also had remarkable long-term results. Nearly 70 percent of its clients fully recovered -- a stark contrast to their counterparts in traditional mental health settings, who tended to be put on a indefinite regime of strong anti-psychotics and, more frequently than not, progressed from institutionalization only to a lifetime of psychiatric disability.

Despite its record, Mosher’s Soteria experiment ended in 1983 when the federal government stopped funding it.

Vermont, which awarded Meacham’s organization the contract to create the new five-bed Soteria program, included this unconventional program as one small component of its mental health system envisioned in Act 79. That law, passed in 2012 in the aftermath of the closing of the Waterbury hospital, aims to shift more people from hospitalization to settings integrated into the outside world.

In a landmark decision in 1999, known as Olmstead, the U.S. Supreme Court recognized that people with disabilities, including mental illness, are entitled to live in the most integrated setting possible, rather than being segregated and restricted in institutions. Vermont signed a consent order with the U.S. Department of Justice in 2005 to upgrade its mental health system under Olmstead.

Paquin said many people believe that keeping mental health patients out of hospitals, in addition to being more humane and effective, is also less expensive. The cost for a patient to stay in the new state psychiatric hospital in Berlin has been calculated at $2,250 per day, while Soteria Vermont estimates the cost for each resident of its program will be $500 to $550 per day.


Overstated benefits?
In Burlington, Sandra Steingard, a practicing psychiatrist for 30 years, stands out as unusual in publicly reporting her shift in attitude toward pharmaceuticals. She wrote an op-ed column last year in The Washington Post that bore the headline, “A psychiatrist thinks some patients are better off without antipsychotic drugs.”

As the medical director of the Howard Center, Vermont’s largest community mental health agency, Steingard works with people diagnosed with psychosis. She wrote that she used to accept the troubling side effects of antipsychotic drugs – such as extreme weight gain, organ damage, muscle stiffness and tremor – as “the unfortunate price” patients needed to pay to get the drugs’ benefits.

And she assumed that many patients needed to take antipsychotic drugs indefinitely, because some people who stopped taking their prescriptions wound up hospitalized or in police custody.
But Steingard said that over the years she came to suspect that pharmaceutical companies and some of her professional peers were overstating the drugs’ benefits and minimizing their side effects.

She began re-examining the issue after reading Robert Whitaker’s book “Anatomy of an Epidemic.” Whitaker posed the question of why, if newer antipsychotics are so effective, the numbers of people with psychiatric disabilities has been rising steeply.

Relying largely on psychiatry’s own research, Whitaker examined long-term outcomes for patients. He concluded that people who reduced their psychotropic medications to very low doses or stopped taking them altogether had a better chance at functional recovery – meaning they were more likely to hold jobs and have meaningful relationships – than those who continued to take the drugs at standard doses over the long term.

After reviewing the literature to verify Whitaker’s findings, Steingard began actively working with her patients to help them reduce their use of antipsychotic medications if they so desired. She also has been exploring and promoting awareness of non-medical approaches to treating psychosis.

Although Steingard has come to believe that people in extreme emotional distress should have options that don’t include drugs and that alternatives can be effective for some people, she does not categorically rule out involuntary treatment. In “Coercion,” an essay posted on her blog on the Web site Mad in America, she explained that as a psychiatrist in a community health setting, she sometimes forces people into hospitals against their will. She also has patients on court-ordered outpatient treatment that may require them to take certain medications.

“I don’t think forced treatment is optimal,” Steingard said in a phone interview. “But I have found myself in situations where someone appears to be dangerous.”

She said the push toward involuntary medication is strengthened in some cases by family members who feel overwhelmed – and by patients who exhibit behaviors that are not acceptable to the community.


A decade and counting
David Stephenson of Glens Falls has been receiving psychotropic medication under court order for about 10 years through the provisions of Kendra’s Law. On the recommendation of a psychiatrist, Stephenson, 33, is given monthly injections of a long-acting older antipsychotic called Haldol, the brand name for haloperidol. If he fails to show up for his injection, he can be, and has been, picked up and taken to the psychiatric ward of the local hospital.

Stephenson originally came under the purview of Kendra’s Law at a turbulent time in his life that included several brushes with police, a stint in jail and several long psychiatric institutionalizations.

The trouble started soon after he turned 18, when he says he was charged with selling a controlled substance after someone stole his Ritalin. The next year, he made a half-hearted attempt at suicide and spent a couple months in the psychiatric unit at Glens Falls Hospital. Soon afterward, he lost his next younger brother to an alcohol-induced death.

For the next four or five years, Stephenson was brought back to the hospital repeatedly for stays of a few days or weeks, sometimes longer. Early in this period, he was diagnosed as schizophrenic and put on strong anti-psychotics. He spent almost a year in a state psychiatric center and later had a couple other multi-month stints in state facilities after criminal charges were brought against him.

During the period when he was cycling in and out of the hospital, Stephenson stopped taking his medication because of how badly it made him feel. This led to the court-ordered monthly injections.

More recently, he became despondent about the side effects of the medication and his lack of say about it. He said the drug causes muscle rigidity that prevents him from working out, tremors in his neck, unsteady gait, visual disturbances such as pulsing white and black dots, ringing in his ears, loss of facial expression, and numerous other symptoms.

“When I try to swallow, my whole throat clenches in different directions and closes,” he said.
He said he suffers nausea and vomits every day. His body makes too much saliva and mucous. He feels restless and compelled to pace.

He is particularly frustrated by cognitive impairment he attributes to the drug treatment.
“I can’t remember my thoughts,” he said.

Although he was once an avid reader who breezed through a few hundred books between ages 15 and 19, since then he said he hasn’t been able to read more than a few pages because he can’t concentrate.

He reports that smoking is the only thing that helps him concentrate. Cigarettes act as “a modulator for my brain,” he said.

At the most recent court hearing regarding his medication, held in January, Stephenson was represented for the first time by a private lawyer, rather than a court-appointed one.

The lawyer, while a willing advocate, had no prior experience handling involuntary medication orders. He asked that the court consider a reduction in Stephenson’s dosage of Haldol. But his request was denied, and this spring the court again renewed the order covering Stephenson.
In July, however, he said he was able to persuade his psychiatrist to reduce his dosage by 25 percent. He was optimistically anticipating the change, which was set be begin this month.

‘Chemical straitjacket’
Tina Minkowitz, a lawyer who lives in Chestertown, N.Y., contests psychiatry’s rationale for forced treatment from a legal perspective. Involved with the psychiatric survivor movement since 1978, she founded the Center for the Human Rights of Users and Survivors of Psychiatry in 2009. The group calls for an end to forced psychiatry and the granting of full legal capacity to all.

“Psychiatric drugs, particularly neuroleptics, alter brain structure and function in a negative way,” Minkowitz said. “These drugs cause a deadening of emotion and spontaneous initiative.”
That, she added, is why the drugs are sometimes called a “chemical straitjacket,” a result she says psychiatry has acknowledged as its aim.

“When you give this kind of drug to a person when they don’t want it, it meets all the criteria for torture,” Minkowitz said.

Though a person may outwardly comply, she said, their action can’t be construed as voluntary when there is any kind of compulsion or intimidation. In the mental health system, many people face the threat of being forced or of being locked up or not released if they fail to do what they are told.

As an advocate, Minkowitz worked with a global network of people in drafting the United Nations convention on the Rights of Persons with Disabilities. The UN adopted the convention in 2006, and 145 of the 190 member countries have since ratified it, although the United States has not. The UN convention considers forced psychiatric treatment to be a violation of human rights.
“It’s a violation of autonomy, of your right to make very personal intimate decisions about what happens to your own body and your whole life,” Minkowitz said.

Asked what should be done if someone is psychotic and disruptive, Minkowitz responded, “We don’t go around drugging people in society because they might be disruptive.”

That only happens to people who are considered incompetent or lacking mental capacity to make decisions for themselves – a category that, she pointed out, includes people in prisons and nursing homes as well as children and the mentally ill. But instead of declaring someone incompetent, Minkowitz says people need to be supported in making their own decisions.


Achieving compliance

McCullough, of the Mental Health Law Project, said that in a system where forcible, court-ordered medication is an option, the question of patients accepting psychiatric drugs “voluntarily” becomes quite murky.

“There’s a very funny meaning of the word voluntary,” he said. “I don’t think that the concept of informed consent is that relevant.”

So some psychiatric patients may agree to take medication voluntarily rather than face the possibility that the state could seek a court order to compel them to do so. And those already covered by court orders typically don’t fight the administration of the drugs, because the prospect of force is always in the background.

“They hold you down and pull down your pants,” McCullough said. “Usually after being injected once or twice, the person agrees to take it orally.”

But while the state wins the vast majority of cases in which it seeks involuntary medication, he said, occasionally a patient wins outright. More frequently, a court may be convinced to rule out certain drugs, perhaps because of the patient’s previous poor reaction to them, or to lower the proposed dosage.

In one recent case, the Mental Health Law Project contested a hospital’s request to administer involuntary medication by inserting a tube through a patient’s nose and down to her stomach.
“It’s just mind-boggling that they could think that would be appropriate,” McCullough said.
During the procedure, the patient would have had to remain still, so a five-point restraint could have been necessary. The painful procedure would have had to be repeated daily unless the patient agreed to oral medication.

The court blocked the procedure.