Jun 03, 2008 01:00 AM

THE HUMAN CONDITION
By Lee Hammel TELEGRAM & GAZETTE STAFF

Former Worcester resident Cathy A. Levin is chairwoman of M-POWER’s Emergency Room Rights Campaign. (T&G Staff/TOM RETTIG)People with psychiatric disabilities can be the most vulnerable citizens in the state, while hospitals and their allies have been called the most powerful force in Massachusetts politics.

Yet for the past five months, people with histories of psychiatric illnesses have sat across a negotiating table from doctors and hospital lobbyists — no johnnies, no stethoscopes.

This is David meeting Goliath, the Bruins tangling with the Canadiens.

On one side of the table are those who want to keep the bureaucracy, which has reduced the resources needed by their industry, from adding yet another layer of regulations. On the other side are those who need protection from the insensitivity and discrimination they believe are exacerbating the medical problems that drive people with mental illness to go to emergency rooms.

What has brought the two groups together is House Bill 2042: “An Act to Protect the Mentally Ill in Emergency Rooms.”

The bill would impose regulations to address complaints by people with mental illnesses: Their physical symptoms are sometimes ignored after medical personnel learn they have psychiatric histories; they are forced to disrobe when people with physical illnesses are not; and, in general, they endure stigma, indignity and lack of respect in emergency rooms.

Cathy A. Levin, chairwoman of M-POWER’s Emergency Room Rights Campaign, is not intimidated sitting at the table. M-POWER — Massachusetts People/Patients Organizing for Wellness, Empowerment & Rights — is an organization for people with a history of psychiatric problems. The organization used to have chapters in Worcester and Lowell, but currently has an office only in Boston.

Along with several other M-POWER members, Ms. Levin, a Somerville resident who lived in Worcester for about eight years, began the negotiations in December.

They have met with state legislators and officials of the departments of Mental Health and Public Health and with representatives of medical providers, including physicians and lobbyists of the Massachusetts Hospital Association, Massachusetts Psychiatric Society, Massachusetts College of Emergency Physicians, Massachusetts Council of the Emergency Nurses Association, and Massachusetts Association of Behavioral Health Systems.

Just planning the negotiating sessions has been a challenge.

“Any meeting has to start at 11. None of us can get up in the morning because of the medications,” Ms. Levin said.

But these consumers have not been pushovers, the hospital officials learned quickly.

“A bunch of us are really bright, well educated,” said Ms. Levin, who started college when she was 16.

She said people who spend time in psychiatric hospitals can “get kind of institutionalized, and you get kind of passive and you take a lot of abuse and don’t say anything about it.”

However, “they have the courage to stand up for others who are defenseless.” For herself, Ms. Levin said, “because I’ve seen such scary stuff in hospitals and in my own head, stuff doesn’t scare me. I’m kind of in touch with my inner Joe Stalin.”

Dr. Eugene J. Fierman, a psychiatrist who attended the meetings as head of the Massachusetts Psychiatric Society, said Ms. Levin felt comfortable enough to disagree with his opposition to regulations and even criticize his written grammar — and attempt to correct both.

“I don’t agree with everything they’re saying, but my hat’s off to them,” Dr. Fierman said. “They are very well spoken, very familiar with the issues. We had a very collegial discussion.”

State Rep. Ruth B. Balser, D-Newton, House chairwoman of the Mental Health and Substance Abuse Committee, said she has been impressed, but not surprised, by the mental health consumers lobbying for the bill she filed to have DPH write the regulations.

“I think people who are motivated by their own experience are always the most powerful advocates,” she said.

Susan Stefan of Rutland, a lawyer who runs the emergency department project for the Center for Public Representation in Newton, has worked with the mental health consumers on Ms. Balser’s bill. She said the consumers have an advantage over herself and the lobbyists.

“They can tell their stories with authority and with credibility. The very fact they’re not paid lobbyists is their strength,” she said. “They’ve suffered through it, and they’re tremendously determined and working tremendously hard, because this is about improving their lives in very significant ways.”

But there is a drawback, Ms. Stefan said.

“Where doctors are talking about their concerns … in ways that psychiatric patients interpret as callous, I’ve seen psychiatric patients walk out of meetings in tears. It’s very difficult for them to hear their lives talked about as policy matters,” she said. “It’s so personal, sometimes people have a hard time maintaining their composure.”

The negotiations between consumers and providers have produced a consensus statement on one topic: Hospitals should rescind any emergency room policies on clothing removal or pat-downs that apply solely to patients with psychiatric histories. The statement also says hospital policies should recognize the right of patients to refuse to remove their clothes, as well as the need for a clinician to request removal when it is appropriate to conduct medical screening.

The consensus recognizes that requesting that clothing be removed can be necessary for protection against potentially harmful substances or hidden weapons. All alternatives to clothing removal should be used before restraint is used, it says.

Now that the House has dealt with its version of the state budget, it can turn its attention to H-2042.

However, regardless of any consensus, the medical care providers have not agreed to new regulations, and so far, Public Health Commissioner Jon Auerbach and Mental Health Commissioner Barbara Leadholm have refused to back new regulations.

Acknowledging there are justified complaints about improper treatment of psychiatric patients in emergency rooms, they said in a joint statement: “We believe that it is the culture of care that needs to change, not necessarily the regulatory environment.”

The Psychiatric Society’s Dr. Fierman said the state would be better served by increasing resources for community treatment to divert the crush of cases from emergency rooms than by imposing regulations on them. While any alleged abuse should be investigated, Dr. Fierman said, the roughly two dozen incidents reported to the Department of Public Health over two years do not “constitute a pattern of gross abuse.”

“To pass a law on the basis of anecdote” is not the answer, he said.

Paul Dreyer, director of DPH’s Bureau of Healthcare Safety and Quality, said officials believe only a small fraction of the abuse gets reported.

“Hospitals need training in a set of techniques: de-escalation, trauma-sensitive care. They are techniques that, if properly applied, would obviate the need for either forced disrobing or restraint and seclusion,” he said.

There are already regulations regarding restraints on the books, Mr. Dreyer added. “The problem is not lack of a regulation. The problem is the hospital doesn’t know how to deal sensitively with people’s behavior. A regulation can’t make someone behave sensitively.”

But there is no doubt in the mind of M-POWER’s Cathy Levin that regulations, not mere suggestions, are needed. Ms. Levin said she believes the only reason the medical care organizations were at the negotiating table was the threat of the regulations in Ms. Balser’s bill.

Ms. Balser, a clinical psychologist, said, “I’ve told them I’d be more than happy to work with them on any legislation to address the stress on emergency rooms. But one thing has nothing to do with the other.”

Shifting people with physical illnesses to mental health treatment is “not about stress. That’s about an inappropriate protocol,” the Newton Democrat said.

Ms. Stefan, who wrote “Emergency Department Treatment of the Psychiatric Patient” (Oxford University Press, 2006), said, “Emergency departments and psychiatric patients are joint victims of a health care system that’s abandoned both of them.”

Contact Lee Hammel by e-mail at lhammel@telegram.com.