Patient Advocacy—and a Deadly Outcome

William Bruce, a young man with symptoms of paranoid schizophrenia, was released from Maine’s state-run Riverview Psychiatric Center in April, 2006. Two months later, he killed his mother with a hatchet. Bruce subsequently was found not criminally responsible by reason of insanity and was recommitted to Riverview.

Joe Bruce, William Bruce’s father and now guardian, along with Joe’s pro bono attorneys argue that despite strong and persistent warnings from William’s first psychiatrist, government-funded patient advocates “strongly lobbied” for his release into society.¹

“The patient advocates acted as if William’s treatment meetings with his doctor were adversary depositions and told him how to answer questions and interposed directions not to answer,” said Bruce senior’s attorney Bob Owen, of the law firm Fulbright & Jaworski. “Their heedless efforts led very directly to William’s release. A short time later, Amy Bruce was dead—something Joe Bruce feared would happen if his son was released.”

In response, advocates and others have argued that mentally ill patients need someone to protect them from abuses and fight for their rights, and they emphasize that Riverview failed to reapply for an extension of William’s court-ordered commitment.

The case, recently described in the Wall Street Journal (WSJ) (August 16, 2008: A1), raises questions about the role of the federal- and state-funded patient advocates for the mentally ill; the civil liberties of the mentally ill; the rights of family members to express their views in treatment, confinement, and release decisions of adult patients; and psychiatrists’ and treatment facilities’ responsibilities.

Advocates’ role

In 1986, following Congressional hearings and investigations that substantiated numerous reports of abuse and neglect in state psychiatric hospitals, then Sen Lowell Weicker introduced the bill that eventually became the Protection and Advocacy for Individuals with Mental Illness (PAIMI) Act. Eligibility under the PAIMI program was generally limited to persons with a significant mental illness or emotional impairment who were inpatients or residents of a treatment facility (including any private or public residential setting that provided overnight care, such as hospitals, prisons, jails, and nursing homes). In late 2000, the act was amended to authorize protection and advocacy representatives (P&As) to serve mentally ill persons who live in community settings, including their own homes.

“The PAIMI program provides protection and advocacy for individuals with serious mental illness and, in particular, protection from abuse, neglect, and rights violations,” said John Morrow, PhD, senior public health adviser at the Center for Mental Health Services (CMHS). CMHS, a part of the Substance Abuse and Mental Health Services Administration, manages the PAIMI programs and distributes funds according to formula grants to protection and advocacy systems—most of which are nonprofit—designated in each state, the District of Columbia, 5 territories, and the American Indian Consortium. CMHS monitors the programs through annual performance reports and periodic onsite visits. In addition, an independent evaluation of the entire PAIMI program is under way and is expected to be completed in the near future.

PAIMI programs “are engaged in both litigation and non-litigation [activities], trying to get improved services, better conditions in the facilities, and better services in the community to ensure that people are protected,” said Curt Decker, executive director of the National Disability Rights Network (NDRN), a nonprofit membership organization for federally mandated P&A systems.

Nationally, PAIMI programs closed 16,000 cases in 2007, according to an annual report available on the NDRN at http://www.ndrn.org/pub/ AnnRpt/2007/2007%20PAIMI%20Report.pdf.

Some 4200 of the cases involved alleged abuse, including complaints of overmedication and failure to provide appropriate mental health treatment; 3300 involved alleged neglect, including lack of a discharge plan or presence of environmental safety hazards. The largest number of cases, 8500, concerned alleged violations of individual rights, such as housing or employment discrimination. The programs also investigated the deaths of 3200 persons with mental illness in facilities and community settings; delivered casework services to some 150,000 individuals with mental illness; and provided information, referral, and training services.

This year’s federal funding for the PAIMI program is $34.9 million, but some states, including Maine, provide additional funding to augment P&A services. The P&As involved in the Bruce case, according to Kim Moody, executive director of the Maine Disability Rights Center, were actually funded by the state.

Where conflicts arise

According to accounts in the WSJ story, in a case summary with supporting medical records posted at www.amybruce.org, and in a press statement issued by Joe Bruce’s attorneys, William Bruce’s treatment was complicated by his consistent refusal to take antipsychotic medications, by his refusal to allow involvement of his parents in treatment or discharge discussions—his right under Maine laws—and possibly by changeovers in psychiatrists.

The following information, gathered from medical records posted on www.amybruce.org, a Web site created by Joe Bruce’s attorneys, and from the WSJ article, summarizes events. After a physical altercation with his father in January 2006, William Bruce was committed by a district court for involuntary hospitalization until the end of April. He was admitted to Riverview on February 6. Jeffrey Fliesser, MD, William’s first psychiatrist at Riverview, told the patient and his advocates that although Bruce was competent to give or refuse informed consent on medication, his paranoid psychosis was not likely to improve without medication. Nevertheless, William continued to refuse to take antipsychotics.

Two months into William’s hospitalization, Daniel Filene, MD, took over his care. According to Filene’s notes, Fliesser had strongly cautioned against discharging William until his paranoid symptoms improved; Fliesser also had advised re-initiating Emergency Involuntary Status at the end of the court commitment if William’s symptoms were unchanged. But, Fliesser himself had not reapplied for extension of commitment before the March 31 deadline nor had he initiated proceedings for an administrative hearing for involuntary medications. Filene also asked if he could speak to William’s mother, Amy, but the advocate, according to Filene, said his parents were a negative force in William’s life. William refused consent. Later, Filene wrote that he believed William would not meet Maine’s legal criteria for further involuntary hospitalization. William was discharged on April 20.

The Bruce case addresses the forced medication issue and also Maine law on patient confidentiality, said Jeffrey Janofsky, MD, director of the psychiatry and law program at Johns Hopkins University and president of the American Academy of Psychiatry and the Law.

Medication refusal is a big problem in all of medicine, Janofsky said, but particularly difficult in psychiatry. In major mental illnesses, such as schizophrenia or delusional disorders, he added, delusions may cause patients to believe that they are being poisoned or that the people who are trying to help them (eg, doctors and family) are really their enemies.

PAIMI records for 2007 show there were 226 closed cases nationally involving involuntary medication. There were 2 cases in Maine.

Medication refusal issues, according to Janofsky, have been in conflict in the law for more than 30 years because of differences between a person’s stated (expressed) interests and their best interests.

“Sometimes protection and advocacy groups will strongly advocate for the patient’s stated interest, no matter how detrimental that stated interest might be to the patient,” Janofsky said. “And frankly, sometimes folks who work in protection and advocacy have anti-medication or even an anti-psychiatry bias. So if you don’t believe that major mental illness exists or if you don’t believe that medicines are an effective treatment for major mental illness, you are not going to advocate that the person you are protecting should take them. But what happened in this particular case is unclear.”

The criticism that P&As are anti-medication and anti-treatment is “absolutely, patently untrue,” said Moody.

“We don’t urge patients to refuse medications. Our job is to make sure that people are represented,” she said. “When a physician has not determined that an individual lacked capacity to give informed consent, and the physician has not taken steps to initiate involuntary medication procedures, we will advise the patient—our client—that [he or she] has a right to choose whether or not to take those medications . . . that’s our job.”

Alan Stone, MD, Touroff-Glueck Professor of Law and Psychiatry, at Harvard, has long been troubled about this problem.