Testimony on Seclusion and Restraints

Testimony given by Joseph Rogers to the Senate Appropriations Committee on April 13, 1999.

Senator Specter, on behalf of the National Mental Health Association as well as the Mental Health Association of Southeastern Pennsylvania, of which I am executive director, I want to thank you for holding this hearing on seclusion and restraints.

I'm here today because I have survived the experience of being put in seclusion and restraints. As an advocate as well as someone who may need acute psychiatric services in the future, I am deeply concerned about this deplorable practice, which has been responsible for numerous deaths as well as many more instances of trauma in those who have experienced it.

I'm here to testify that massive changes in the system are needed in order to protect the lives of people with mental illness.

First, we must move away from institutions toward community-based treatment. It has been repeatedly demonstrated that people do better in the community, and that the behaviors that get them in trouble, and into restraints, are a product of conditions in the institution. I've been there, and no one should have to be subjected to those kinds of conditions, where people are crammed into a small room to spend their days with little to engage them. This kind of stress definitely has an impact on behavior. So we need to get people out of the institutions.

Second, we must safeguard the rights of people in institutions. The effort to protect people's rights is central to Pennsylvania's move toward the elimination of seclusion and restraint in its state hospitals, about which I will provide details later in my testimony. It is my understanding that the American Psychiatric Association is opposing the proposed legislation and is claiming that it will have a chilling effect on "treatment options" and "safety issues." Well, there is nothing more chilling than death, and people are dying as a result of this so-called treatment, which in reality indicates a treatment failure. And we must document that failure so that we can make the needed changes in our system.

Third, we need to involve consumers, family members and the community in helping develop policies and procedures, and in monitoring this situation. And we need your help: we need federal legislation that mandates that information be gathered and disseminated. And we need to make that information public. Then we must ensure that consumer-run self-help organizations, family organizations, and advocacy organizations such as Mental Health Associations and Protection and Advocacy agencies get the information they need and have the necessary access to monitor this very dangerous practice.

That being said, I am testifying in support of the legislation proposed by senators Joseph Lieberman and Christopher Dodd and by representatives Pete Stark, Diana DeGette and Rosa DeLauro. We consider this legislation a good first step in regulating the use of seclusion and restraints.

At the same time, it is important to note that the legislation does not go far enough. "Far enough" would mean instituting regulations that would either outlaw the use of seclusion and restraints, or make it nearly impossible to employ them.

In Pennsylvania, our top mental health official, Charles G. Curie, has made it a goal to eliminate the use of seclusion and restraints in state mental hospitals. This goal has already been achieved in one state hospital: for the six months before it closed, as part of Pennsylvania's progressive shift toward community-based services, Haverford State Hospital did not employ seclusion and restraints.

My testimony will cover the Pennsylvania model, as well as my own personal experience with seclusion and restraints. I will also suggest ways that the proposed legislation could be made more effective.

My knowledge of this subject was gained firsthand; I have been repeatedly hospitalized for mental illness and have experienced seclusion and restraints a number of times.

One of my worst experiences was in a private hospital in Florida. I had been brought to the emergency room by ambulance from a halfway house on Friday evening. Although I was fairly subdued, I was immediately taken to a room with thick, opaque glass doors and strapped to a sort of platform in five-point restraints: two each on my wrists and ankles and one across my chest. No sound penetrated the room and, since it contained nothing but the platform to which I was strapped, there was a nearly complete sense of sensory deprivation.

Over the next two-and-a-half days I was psychotic and hallucinating, and passed in and out of consciousness. I remember being given some shots. I don't remember getting anything to eat or drink, although I suppose I must have. I was left alone to lie in my own urine and excrement, until someone came to clean me up, once. Most of the time, I was ignored.

When the regular staff replaced the weekend staff on Monday morning, they found me filthy and dehydrated. They were shocked, and kept asking, "What did you do? You must have done something." I had no answer; I did not know what I had done.

This may sound extreme, but I have heard many similar stories.

Obviously, no one's definition of "best practices" would include my experience in Florida. But, unless restraints are outlawed, there will always be the possibility that inexperienced staff will over-react and violate procedures.

For example, a couple of years ago, when I was left in restraints overnight at a respected private psychiatric hospital in Philadelphia, I was told later that this was "against hospital procedures." Unfortunately, because of chronic staff shortages and other administrative shortfalls, not to mention staff who are punitive or frightened, it seems to be a given that procedures will be violated on a regular basis. "Best practices" may dictate the use of restraints only in extreme cases of risk to the patient or others; but this is not what happens.

In fact, many consumers of mental health services steer clear of going to emergency rooms to seek psychiatric help because of the risk that, if they seem agitated, they may wind up in seclusion and restraints.

Unless any policy statement outlaws restraints or at least makes it nearly impossible to employ them, there is going to be abuse. If you have an inexperienced nurse at midnight who is terrified of the patients, policies tend to go right out the window. By the same token, if you don't have a room equipped with a table to strap people onto, that's the best guarantee that people won't be restrained against policy.

It's also vital to make sure that chemical restraints are not substituted for tables and straps. When I have been heavily medicated to make me "calm down," I have found that the effects can last for weeks.

Educating staff in the use of alternatives to restraints is more important than creating policy to govern the use of restraints, since policy is so often violated.

For the reasons described above and the ones that follow, I fully support the decision of Pennsylvania's top mental health official, Charles G. Curie, to establish the goal of eliminating seclusion and restraints in state hospitals.

First, seclusion and restraint are not treatments; they are treatment failures.

Second, seclusion and restraint are high-risk techniques that may result - and have resulted - in injury or death to the patient, both while the patient is being subdued and afterward. In addition, staff injuries decline in frequency and severity when the need for physical interventions with patients is eliminated.

Third, a high percentage of state hospital patients are trauma survivors, and seclusion and restraint are themselves traumatic, for both patients and staff. Hospitals cannot cause trauma and effectively care for people.

Fourth, the use of seclusion and restraint fosters an atmosphere of staff control over patients rather than the desired treatment partnership.

In 1995, when Mr. Curie assumed his duties as Deputy Secretary for Mental Health in Pennsylvania, he found that there was a relatively high usage of seclusion and restraint in some state hospitals.

With the support of others in the department, he took the first step of redefining the use of seclusion and restraint as a treatment failure, only to be used as a safety measure of last resort, when all other types of intervention have failed. This resulted in clinicians using alternative interventions, and led to a significant reduction in seclusion and restraint in most state hospitals.

The Office of Mental Health thus created an environment in which all staff expect to see a reduction in the use of seclusion and restraint and the risks associated with their use.

This shift in attitude has been accompanied by dramatic changes in policy and procedure, Mr. Curie has reported. For example, the department's Bureau of Hospital Operations has developed a system-wide monitoring tool that measures and compares the incidence and duration of seclusion and restraint in all hospitals. Increased emphasis has also been put on staff training on clinical alternatives to the use of seclusion and restraint, as well as ongoing reinforcement by management of reducing usage at each hospital. Consequently, Pennsylvania has continued to see a substantial reduction in the incidence and duration of use of these techniques.

As Mr. Curie recently said:

Pennsylvania's experience proves that the use of seclusion and restraint can be eliminated or greatly reduced when there is a treatment environment that focuses on the strengths of the individuals being served; that protects patients' dignity, comfort, and privacy; that promotes constructive interaction and partnership between staff and patients; that eliminates arbitrary ward rules developed for staff convenience; that fosters patients' ability to make choices and have a greater understanding of their own behavior; and that involves management and staff in planning how to reduce the incidence of seclusion and restraint.

The options available today make the elimination of seclusion and restraint an extremely realistic goal. One such option is use of a new generation of antipsychotic medications, which are more effective in reducing the symptoms that lead to aggressive behavior. Clearly, medication should be administered only in the context of a treatment plan in order to relieve symptoms, and not as a chemical restraint.

Clinicians also have a better understanding of the use of verbal de-escalation techniques to avert physical confrontation. In addition, providing more hours of active treatment and more structure and activity for patients during the day would leave less time for conflicts to erupt between patients and staff.

The Pennsylvania Office of Mental Health and Substance Abuse Services has instituted a standardized, universal risk assessment procedure to help identify people who may exhibit behaviors that could put them at risk of seclusion and restraints, and to target those risks through treatment planning. The objective is to help people learn to manage their anger instead of waiting until a crisis erupts.

After any sort of seclusion or restraint is used - and that is only in the most extreme cases - Pennsylvania policy requires a debriefing so that patients and staff can talk about the incident, figure out what may be learned from it, and use those lessons in the treatment planning process in order to avoid similar incidents. This also allows both staff and patients an opportunity to deal with the trauma associated with their use.

The Office of Mental Health and Substance Abuse Services is establishing a baseline and using that to measure the incidence of seclusion and restraint periodically in each state hospital. And the state plans to share that and other such information publicly. Any licensed entity that provides mental health care - especially those that are publicly funded - must be accountable to the public. That includes accountability about seclusion and restraint.

The legislation that has been proposed in the Senate would keep confidential any investigations and analyses developed in the wake of a death, whereas the legislation proposed in the House would make this information public. In this regard, the House legislation is superior. The only way things can change is if there accountability to the public, and if state Protection and Advocacy agencies as well as citizen advocacy organizations know and can comment on policies, on how those policies are being implemented or are not being implemented, and on whether the incidence of restraint use is reported on a regular basis.

One mechanism might be under P.L. 99-660, the State Mental Health Planning Act, which requires that every state submit a mental health plan to the Substance Abuse and Mental Health Services Administration. The plan could require information on the utilization of restraints. This information should be broken down by state hospital, so that a pattern of utilization can emerge. The advocacy community can then focus their attention in particular on institutions with a high usage of restraints.

As I mentioned above, the effort to eliminate seclusion and restraints has already been successful in at least one state hospital: for six months before Haverford State Hospital closed, there was no use of seclusion and restraints and there was a decrease in the use of medication.

Aidan Altenor initiated the effort to end seclusion and restraints when he was Haverford's superintendent; he credits Deputy Secretary Curie with providing the impetus. He has since been working toward the same goal at Norristown State Hospital, where he now serves as superintendent.

Mr. Altenor described methods, which were successful at Haverford, that can lead to eliminating restraints.

First, as mentioned above, the use of restraints must be re-defined as a treatment failure. As Dr. Altenor said, "This is not a clinical intervention; this is tying you to a bed."

Second, a one-hour limit must be set on the period for which a physician can write a restraint order; the patient must then be reassessed. In Haverford's past, there was no such time limit. Dr. Altenor noted that, at Norristown State Hospital, the nursing staff plays a critical role in determining whether someone needs to remain in restraints for the full time period for which the order was written. That is, a nurse may determine that someone may be released from restraints in 10 or 15 minutes, although the order was for an hour.

Third, when someone exhibits behavior that the staff may consider cause for using seclusion and restraints, staff must attempt to determine what someone is trying to communicate and must ask how the person's treatment plan can be revised to be more responsive to that person's needs.

Fourth, the staff must review with the patient any incident that has led to seclusion and restraints, and must ask what to do if there is a similar incident in the future. This is common sense, it involves listening to the consumer and saying, 'Oh, that's what you want us to do; we can do that.' Often, this is something as simple as going for a walk. Dr. Altenor said that this approach has played a significant role in eliminating the use of restraints for many people. Dr. Altenor added that when clinicians suspend judgment about what they believe to be the most appropriate clinical intervention and go with what the consumer wants, everyone ends up winning. With patients who are not able to provide straightforward feedback, clinicians must apply critical acumen to translate their messages so that they can respond with more supportive interventions.

It is also extremely important to hold training sessions where all points of view are represented.

At Haverford State Hospital, panel discussions among consumers, family members and professionals were presented. Besides personal testimony, the sessions also included data on what happens when people are in restraints, such as the increased risk of injury to both staff and patients. Prevention was also stressed.

Dr. Altenor said that the most compelling aspect of the sessions was the consumers' stories about how it felt to be in restraints. Many people said that they felt violated, and at the mercy of whoever was walking around in the room. They felt they were being punished for aspects of their illness over which they had no control, adding insult to injury. He said that hearing the consumers' perspective was an eye-opener.

Clearly, the consumer perspective is the most important one. We are advocating for a national program of self-advocacy training for consumers of mental health services, because we find that consumers make the best advocates on such issues as the abuse of restraints. This program would be implemented through Protection and Advocacy agencies with the assistance of the National Mental Health Association.

We would also like to see a requirement for the establishment of consumer/family/volunteer monitoring teams at psychiatric facilities. These teams would serve as a vital ombudsman when situations arise in which restraints may be applied. In Pennsylvania as in many other states, we already have peer advocates working in state hospitals, as well as peer-run drop-in centers in hospitals.

And, as I mentioned at the beginning of my testimony, we must move away from institutions toward community-based treatment.

I would like to talk about two of the individuals whose stories are told in an amici curiae brief filed with the U.S. Supreme Court by the National Mental Health Consumers' Self-Help Clearinghouse, of which I am also executive director, and other consumers and consumer organizations. The brief was filed in the Olmstead case, which is a challenge to the community integration mandate of the Americans with Disabilities Act.

Both of these individuals - Margaret Donahue and James Price - spent a lot of time in seclusion and restraints when they were residing in state hospitals. As James Price described the conditions: "It was hard living there. I had to stay in a day room and wasn't able to get out. We had a dormitory with eight to ten people. I got in trouble there a lot. They would put me in seclusion and restraints and give me needles."

For the last eight years, however, he has lived in his own apartment in Philadelphia, and he enjoys his freedom. He does volunteer work, goes to the movies, and has his eight-year-old niece over to stay.

Margaret Donahue also spent most of her life in institutions. She now lives in Willow Grove, Pennsylvania, in a house she shares with two other women, both of whom were also patients at the state hospital. The house is a "supported living" residence, with round-the-clock staffing.

In the hospital, she reported, she spent a lot of her time in restraints because of fighting and banging her head. In the community, she has none of those problems. She entertains visitors, and sometimes goes to church. She also does her own housework, and has a part-time job cleaning houses. In her words, "It's better living in my house [than in the hospital]. You can't live in the hospital all your life."

No, you can't. But those people who do find themselves hospitalized must be assured of a safe place. Toward this end, we would like to see the day when the last available set of restraints is displayed in a Plexiglas case, under a sign saying "obsolete equipment." We hope the proposed legislation takes us one step closer to that day.

Thank you for your attention.

Testimony given by:
Joseph A. Rogers, Executive Director
Mental Health Association of Southeastern Pennsylvania
1211 Chestnut Street, 11th Floor
Philadelphia, PA 19107
215-751-1800, ext. 273
E-mail: Joseph Rogers

His testimony was given on behalf of the National Mental Health Association, 1021 Prince Street, Alexandria, VA 22314 before the Labor, Health and Human Services, Education and Related Agencies Subcommittee of the Senate Appropriations Committee on April 13, 1999.