NAMI Testifies At U.S. Senate Hearing On Deaths From Restraints
Contact Your Member Of The U.S. Congress
Now To Support Restraints Legislation
|For Immediate Release
13 Apr 99
Today, April 13, 1999, Wanda Mohr, Ph.D., R.N., F.A.A.N., a family member, consumer, and active NAMI member who also is Assistant Professor Nursing for Children, University of Pennsylvania, testified at the Senate Appropriations Committee, Subcommittee on Labor-HHS-Education hearing on "Deaths From Restraints At Psychiatric Facilities."
Attached are Dr. Mohr’s testimony, NAMI’s Press Release, and NAMI’s one page hearing handout, "Five Deaths In Five Months: How Many More Will Die?"
The hearing was jammed - standing room only and three film crews filming the proceedings.
Refer to NAMI E-News #99-109, "Grassroots Action Needed To Enact Patient Freedom >From Restraint Legislation.," available on the NAMI website at www.nami.org/polict.htm. Three legislative bills have been introduced - S. 736 by Senator Joseph Lieberman (CT), S. 750 by Senator Christopher Dodd (CT), and H.R. 1313 by Representatives Diana DeGette (CO), Pete Stark (CA), Rosa DeLauro (CT), and 19 other cosponsors. All three bills would require a physician to authorize the use of restraints, except in emergency situations; authorize restraints only for emergency safety situations; and mandate the reporting of deaths and serious injuries which result from the use of restraint.
All NAMI members and advocates are urged to contact their Senators and Representative and encourage them to support and cosponsor these bills and end the tragic deaths of consumers in psychiatric facilities from abuse of restraints and seclusion. Restraint legislation should provide national standards that only allow the use of restraints for physical safety and mandate reporting of deaths and injuries. All members of Congress can be reached through the Capitol Switchboard at 202-224-3121. Fax, email and mail addresses can be obtained by going to the NAMI website at http://www.nami.org/policy.htm and click on Write to Congress.
Senators Lieberman and Dodd were the first to testify at the hearing. Senator Lieberman emphasized that the use of restraint resulting in death and injury was "invisible to most of us" until the Hartford Courant October 1998 series "broke down the walls of secrecy." He discussed his "increasing horror and shame," his "sense of anger and determination to prevent future deaths and injury," his "sense of urgency," and "the national shame" with this "cruelly overused and used inhumanely" intervention with persons who are disabled by mental illness. Senator Dodd held up and cited the NAMI hearing handout, "Five Deaths in Five Months: How Many More Will Die?" Senator Dodd emphasized the lack of training of staff and reported that only three states - California, Colorado, and Kansas - license mental health aides working in mental health facilities.
Jean Allen, Ph.D., was the next witness. Dr. Allen described the death of her sixteen year old son, Tristan, on March 4, 1998 at a private psychiatric hospital in North Carolina. Dr. Allen, who holds a Ph.D. in child development and family studies, described her son’s experience, being admitted for a severe depressive episode and when seeking to leave a group therapy session, being forced into seclusion and restraint. The restraints included a constant "mouth covering" while being placed face-down in his bed with his feet strapped to the foot of the bed. Cause of death - asphyxiation. Dr. Allen emphasized that the hospital had no written policy on the use of mouth coverings but that they were used 85-90% of the time that restraints were utilized, and this in a facility with the highest JCAHO accreditation. The use of mouth coverings just evolved in the hospital over a five year period. The hospital, in its defense, also cited the lack of national standards.
Wanda Mohr made five major points in her testimony: seclusion and restraint are psychiatric conventions rather than interventions based on a foundation of research; there is a lack of meaningful oversight concerning the use of restraints and seclusion; there is no procedural consistency; there is little staff education and training; and there is a psychiatric culture that is in serious need of self-reflection and reform. Her statement is attached.
The next witness was Joe Rogers, consumer member of the National Mental Health Association. Mr. Rogers recounted his experience of being restrained for two and a half days while hospitalized in Florida. He was never released to go to the bathroom. He was cleaned up only once in two and a half days. After two and half days he was filthy and dehydrated.
Dennis O’Leary, M.D., President, Joint Commission of Accreditation of Healthcare Organizations (JCAHO) emphasized that the failure to identify and report deaths and injuries can threaten accreditation and he endorsed national legislation to mandate the reporting of death and injury and endorsed root cause analyses, but advocated that they must be protected from public disclosure.
Tom Harmon, director of the New York P&A (New York Commission on Quality Care) reported on the 4,000 cases of abuse and neglect that his agency has investigated over the past 20 years. New York is one of the few states which mandate reports of deaths to independent entities.
Senators Specter and Harkin then had Joe Rogers demonstrate how various restraints were applied.
Senator Specter’s questions included: to Dr. O’Leary - is it realistic to limit restraints authorization to a physician’s order? Dr. O’Leary said yes, it was not only realistic, but necessary. To Mr. Harmon: how many deaths have you investigated? Mr. Harmon has investigated 2,000 - 3,000 deaths. In 1998, they investigated 170 allegations of abuse and neglect involving restraints, four involving death. To: Dr. Allen: did the hospital where your son died, show recklessness as well as carelessness? And shouldn’t we enact criminal sanctions when such deaths occur? Dr. Allen agreed that there had to be greater accountability. To Dr. Mohr: How do we educate workers when the use of restraint is based on convention? Dr. Mohr replied that we need to identify promising practices, then establish a research basis underlying the promising practices. We need to learn what causes restraint uses and document how they can avoided. To Mr. Rogers: Would you agree that Pennsylvania’s state psychiatric hospital system’s focus on having the treatment environment focus on patient strengths and eliminating restraints desirable? Mr. Rogers agreed and stressed that hospital leadership is held accountable for such practice.
Senator Harkin’s questions to witnesses: To Dr. Allen: What should be part of a training effort and can’t it be addressed at the national level? Dr. Allen replied that this was a system failure, not a patient failure. De-escalation technique training is important. Staff must be taught about why restraints are used. Most importantly, staff must maintain their own self-control and not use restraints as discipline. To: Mr. Rogers: Isn’t coming to a patient with these devices going to cause a serious emotional reaction by the patient? Mr. Rogers replied yes, particularly since a number of hospitalized persons have histories of being abused. To Dr. Mohr: Are restraints used for other populations and why? Reply: yes, restraints have been used for persons with mental illness and other populations such as those with developmental disabilities and they are used by convention largely for control, not therapeutic, reasons. To: Dr. O’Leary: what can you do to improve practice? Reply: the Pennsylvania model is a good approach to replicate.
Senator Specter concluded the hearing observing that he is going to pursue three legislative responses - authorization of restraints solely by physicians; mandatory reporting and subsequent investigations of deaths and serious injuries; and exploring the use of criminal sanctions when deaths result from restraint.
STATEMENT OF WANDA K. MOHR Ph.D., R.N., F.A.A.N ON BEHALF OF NAMI,THE NATIONAL ALLIANCE FOR THE MENTALLY ILL
BEFORE THE LABOR, HEALTH AND HUMAN SERVICES AND EDUCATION SUBCOMMITTEE, SENATE COMMITTEE ON APPROPRIATIONS
APRIL 13, 1999 - 9:30 a.m.
As a nurse I am here today to tell you that restraint and seclusion are the most draconian methods of patient control in mental health settings. I’ve seen them used, and I’ve broken up situations that could have turned into potential tragedies.
Imagine for a moment, if you will, what it must be like to be12 years old, alone, frightened by voices in your head, not able to understand what is happening, and having six to eight big people surround you and yell at you to "calm down." When you try to run away or defend yourself against the monsters gathered around you, they lunge at you and pin you to the floor.
In the worst-case scenario you can’t breath and you tell them. But they pay no attention – after all, you’re crazy. They dismiss your complaints by telling each other that you’re being manipulative. And then things begin to go black.
In the worst-case scenario, you die, calling for your mommy and for help that never comes. In the best-case scenario, they carry your little body to a bare room, strap you to a bed, spread-eagle, pull down your pants, inject you with drugs, and leave you alone with the horror – for hours at a time. This scene is replayed over and over again in psychiatric hospitals across this county.
I am an active member of the National Alliance for the Mentally Ill, the nation's largest, grassroots voice on mental illness. As someone who had a family member with severe and persistent mental illness, and being a consumer myself as well as someone who has years of clinical and now academic nursing experience, I feel uniquely situated to speak to the issue of restraint.
Last year, NAMI members in Connecticut played a critical role in getting the Hartford Courant to investigate the use of restraint in psychiatric facilities---which led to publication of the series that documented 142 actual deaths around the country over a decade and that commissioned a Harvard University report that estimated between 50 and 150 deaths annually as a result of restraint.
On March 25th, NAMI released a summary of reports of abuse received since the Hartford Courant series was published in October. Over five months, five new deaths occurred. Four were youths under the age of 18. One was a nine-year-old boy. And those are only the ones we know about.
Five deaths in five months.
As you consider the issue, please think about how many more may die.
Unless Congress acts.
I am here today to speak to how and why restraint situations go out of control and to give my opinion about what can be done to alleviate this problem. In the interest of brevity I have bulleted my list so that it can be easily perused by this committee, and I will read some of those. I do ask that my entire testimony as submitted be entered into the congressional record.
Seclusion and restraint are psychiatric conventions rather than interventions based on a foundation of research.
Therapeutic interventions should promote, maintain, or restore health or at least prevent further illness from occurring. The use of any therapeutic intervention in a clinical setting should be based on solid scientific data. To date we have very scant research concerning the effectiveness or the effects of restraint use on patients and no research on the effectiveness of alternate ways of managing aggressive or violent behavior (Walsh & Randell, 1995). Placing a patient in restraints remains an unquestioned and accepted ritual of practice despite recognition by the psychiatric community that it is governed by consensus rather than research (Rubenstein, 1983; Goren, 1991; Goren & Curtis, 1997).
Lack of meaningful oversight
Based on my experience as a practitioner, hospital accreditation and inspection is little more than a check of appropriate paperwork. I have been through many such inspections and quite frankly the representation of reality by an adequately completed form is problematic in that there is no evidence that what was written actually happened.
Visits are announced. Knowing weeks in advance of a JCAHO visit, hospital administrators will often assign additional staff and arrange for "charting parties" in which paper work is cleaned up and brought into compliance with standards. This practice was reported and documented repeatedly during the investigation of the abuses conducted by the state of Texas and former Representative Patricia Schroeder’s investigation of those abuses (U. S. Government Printing Office, 1992). Reports from my colleagues who still practice in clinical settings raise serious doubt that much has changed with respect to this kind creative record-keeping.
There are no penalties for non-compliance. At worst, even in the event that accreditation is denied, hospitals do not necessarily suffer ill consequences.
Years ago, we in health care relied on paperwork and asking other professionals about the efficacy of "pain control." We finally woke up to the fact that the patient is the one who should be asked. While it seems commonsensical to ask the patients and families – the experts in their own experiences – for their opinions, inspectors do not independently meet with patients and families to ask about their hospital experience. The mentally ill still have no credibility. This puts the onus of "proof" on the very people who are in a position to alter reality.
No procedural consistency
Procedures, standards and regulatory statements on restraint use vary from document to document and from institution to institution. Definitions of assault and violence are loose and articulated in the vaguest of terms and subject to interpretation (Rice, Harris, Varney, & Quinsey, 1989; National Research Council, 1993).
Standards and regulatory documents are based on a number of unspoken assumptions that are not true, and I could be here for many hours outlining and debunking them. But I will focus on a single example – the assumption that staff members are adequately trained and educated in the care of vulnerable individuals and that they can de-escalate potentially explosive situations. In fact, research conducted by nurses reveals that nurses’ aides are not cognizant of available alternative techniques to restraint (Neary, Kanski, Janelli, Scherer, & North, 1991). Over 70 percent of these same aides had attended an inservice on the subject one year prior to this study.
Moreover, so far as I know, procedures for seclusion and restraint are developed for the most part without consumer input. Their development is driven by external experts rather than the real experts -- the patients.
Standards and regulatory guidelines are written by persons who are not involved in the decision to employ the restraints. Psychiatrists issue guidelines and write orders for the use of seclusion and restraint in the abstract. In general they are rarely involved in observing the incidents that lead up to the necessity for such intervention. They have little day-to-day experience with the cycle leading to the intervention and therefore are not in a position to monitor, nor help to prevent and reduce their use. Therefore, they don’t really see this issue as the problem that it is – it simply is not part of their reality.
Lack of staff education and training
The employees dealing directly with the most vulnerable patients are the ones with the least education. This has been the case throughout history, and there is ample documentary evidence that speaks to this problem (Perrow, 1965; Goffman, 1961; Morrison, 1990).
There are fuzzy requirements for education and training, which seem to be mostly voluntary. One of the first things to be jettisoned when money gets tight are staff-development activities (Braxton, 1995). Because training and on-going education are not universally required, they are considered a luxury more than a necessity.
There is a pervasive attitude that anyone can take care of psychiatric patients, especially in the case of children. We have special standards for nursing staff who work in critical care or emergency areas, but no such standards in psychiatric settings. As much as critical care units, the acute care unit of a psychiatric hospital is a complex milieu with a very difficult population whose brains can feel as though they are "on fire." This is a situation requiring special training and education, especially today when the patients that we are seeing are the sickest of the sick.
There is a lack of developmentally appropriate programming for patients. This was another problem that was explored in the National Medical Enterprises investigation of the early 1990s. Here I would have to reference my own work because almost nothing has been written or researched about this topic by any one else. Children of varying ages are mixed with everyone else receiving the same "interventions" for the same periods of time. Four-year-olds do not have the same capacity for attention as 14-year-olds, yet they go to 50-minute groups. When they act in a developmentally appropriate way, by whining or acting up, they are punished and a cycle of aggression is set up (Goren, Singh, & Best, 1993).
There are too few nurses with too little education. Nurses are costly; thus the actual number of registered nurses is cut to the bare minimum in the interest of profits. Moreover, the education of nurses is in and of itself a problem. The majority of nurses (64 percent) do not have even a baccalaureate degree (U.S. Dept. of Health & Human Services, 1996). Thus, a two-year, associate-degreed registered nurse may have seven to 10 days of exposure to psychiatric content. A four-year baccalaureate-degreed nurse has considerably more, but even he/she is a generalist. I teach an extremely bright cohort of young people in a baccalaureate program, and believe that I do so quite competently. Yet I do not believe that the time spent with me qualifies them to work with such a complex population.
Staff turnover has been repeatedly correlated in the literature with incidents of violence (Rice, Harris, Varney, Quinsey, 1989). Staff turnover results from poor pay, poor working conditions, and high levels of stress and frustration due to both a very challenging population and the lack of skills needed to work with that population (Braxton, 1995).
A psychiatric culture that is in serious need of self-reflection and reform
Despite much progress in psychiatry and an insistence that psychiatric illness is brain illness, many psychiatric professionals still want to play under a different set of rules than their colleagues in other specialties. A situation in which a restraint takes place is an acute psychiatric emergency that is analogous to any other emergency in medicine, and it should be handled by medical personnel as such. A cardiologist would not dream of relegating the assessment of his/her patient to a staff member after such an event. They would grumble and roll themselves out of bed to do what they are responsible for doing – assess the patient. Yet during this debate psychiatrists have resisted our suggestions that they subscribe to the same standards of practice.
Resistance to advocacy groups is common. My experience has been that with many nurses and psychiatrists there is a general attitude that advocacy groups are a nuisance and that they make life more difficult for both groups.
Resistance to shared decision-making and a participative model of care is also common. Nurses and MDs resist consumer input and the input of their families, even though the families are the repositories of the best information about interventions that may help in treatment. They are reluctant to give up any power to families and patients as the ontological arbiters of what is "normal." Patient’s (and their families’) experiences are discounted and considered lacking in credibility. Historically we have learned little from Rosenhan’s (1973) work in which he observed that psychiatric staff members "keep to themselves, almost as if the disorder that afflicts their charges is somehow catching." (p. 254)
I’ve made a number of recommendations in my written testimony, but I’d like to highlight just a few today.
Identify, evaluate, and implement promising practices while we conduct clinical research studies into theory and intervention.
Back research agendas on this issue. Funds to specifically study restraint use, misuse and best practices must be allocated to agencies such as NIMH (National Institute of Mental Health), NIJ (National Institute of Justice), and NINR (National Institute for Nursing Research).
Insist on greater physician accountability and involvment.
Mandate unscheduled oversight by independent agencies/persons that goes beyond exercises in paperwork that is not announced ahead of time.
Require systematic reporting of restraint/seclusion incidents to an independent agency.
Mandate reporting of sentinel events such as injury and death.
Develop consistent standards for restraint use that are patient- and not staff/physician-focused, and include consumers in the development of these standards. Base such standards on the concept that restraints may only be used for emergency safety situations.
Mandate staff orientation and ongoing education and training that is fully documented. The literature provides considerable support for the idea that significant reductions in institutional violence could be achieved by a staff training program aimed at teaching non-restrictive and non-authoritarian ways of interacting with residents.
Increase standards for those who can be hired to work with psychiatric patients. For example, nurses should be certified and have advanced training, and aides or mental health technicians should have a high school education and special training and education in the care of psychiatric populations.
Insist that patients and their families are given free access to members of advocacy groups and that the telephone numbers of advocacy groups be prominently displayed in the living areas of each facility and also given individually to each patient upon admission.
Provide protection from retaliation to staff members for their advocacy efforts on behalf of patients.
Respectfully submitted to the U.S. Senate Committee on Appropriations, Subcommittee on Labor, Health and Human Services and Education by:
Wanda K. Mohr Ph.D., R.N., F.A.A.N.
Assistant Professor Nursing of Children
Course Director Psychiatric Mental Health Nursing
University of Pennsylvania
School of Nursing
Braxton, E.T. (1995). Angry children, frightened staff: Implications from training and staff development. In D. Piazza (Ed.). When love is not enough: The management of covert dynamics in organizations that treat children and adolescents (pp. 13-28). New York, N.Y.: The Hawthorne Press.
Goffman, E. (1961). Asylums: Essays on the social situation of mental patients and other inmates. Garden City, N.Y.: Doubleday Anchor Books.
Goren, S. (1991). What are the considerations for the use of seclusion and restraints with children and adolescents. Journal of Psychosocial Nursing and Mental Health Services, 29(2), 32-33.
Goren, S., Singh, N.N., & Best, A.M. (1993). The aggression-coercion cycle: Use of seclusion and restraint in a child psychiatric hospital. Journal of Child and Family Studies, 2(1), 61-73.
Goren, S. & Curtis, W.J. (1996). Staff members' beliefs about seclusion and restraint in child psychiatric hospitals. Journal of Child and Adolescent Psychiatric Nursing, 9(4), 7-11.
Morrison, E.F. (1990). The tradition of toughness: A study of nonprofessional nursing care in psychiatric settings. Image: Journal of Nursing Scholarship, 22(1) 32-38.
National Research Council (1993). Understanding and preventing violence. Washington, D.C.: Author.
Neary, M.A., Kanski, G.W., Janelli, L.M., Scherer, Y.K., North, N.E. (1991). Restraints as nurse’s aides see them. Geriatric Nursing, July/August, 191-192.
Perrow, C. (1965). Hospitals: Technology, structure, and goals. In J. G. Marsh (Ed.), Handbook of organizations (pp.47-60). Chicago, IL: Rand-McNally.
Rice, M.E., Harris, G.T., Varney, G.W., Quinsey, V. (1989). Violence in institutions: Understanding, prevention and control. London, U.K.: Hans Huber Publishing.
Rosenhan, D. (1973). On being sane in insane places. Science, 179, 250-258.
Rubenstein, H. (1983). Standards of medical care based on consensus rather than evidence: The case of routine bedrale use for the elderly. Law Medicine and Health Care, 11, 271-276.
U.S. Government Printing Office (1992). Profits of misery: How inpatient psychiatric treatment bilks the system and betrays our trust. Washington, D.C.
U.S. Dept. of Health & Human Services. (1996). National advisory council on nurse education and practice: Report to the Secretary of the Dept. of Health and Human Services on the basic registered nurse workforce. Washington, D.C.
Welsh, E & Randell, B. (1995). Seclusion and restraint: What we need to know. Journal of Child and Adolescent Psychiatric Nursing, 8 (1), 28-40.
"HOW MANY MORE MUST DIE?," NAMI ASKS CONGRESS
Psychiatric Nurse Describes Horror of Restraints, Citing Five Deaths In Five Months
Washington, D.C.---In testimony before a Senate appropriations subcommittee today, Wanda Mohr, Ph.D., R.N., F.A.A.N, assistant professor of the nursing of children at the University of Pennsylvania, described the use of restraints in psychiatric hospitals as "situations that go out of control," that easily turn into "tragedies."
A member of the National Alliance for the Mentally Ill (NAMI), Mohr also cited NAMI’s compilation of recent reports of abuses by restraints and seclusion---including five deaths over a five-month period.
"Four were youths under the age of 18. One was a nine-year-old boy. And those are only the ones we know about," Mohr told the subcommittee chaired by Senator Arlen Specter (R-PA). "Five deaths in five months. As you consider the issue, please think about how many more will die, unless Congress acts."
"Imagine for a moment what it must be like to be 12 years old, frightened by voices in your head, not able to understand what is happening and having six to eight big people surround you. When you try to run away or defend yourself…they lunge at you or pin you to the floor. In the worst-case scenario, you can’t breathe and you tell them. But they pay you no attention---after all, you’re crazy," Mohr declared. "And then things begin to go black…you die, calling for your mommy and for help that never comes."
"In the best-case scenario, they carry your little body to a bare room, strap you to a bed, spread-eagle, pull down your pants, inject you with drugs, and leave you alone with the horror for hours at a time. This scene is replayed over and over again in psychiatric hospitals across the country."
NAMI, the nation’s largest grassroots advocacy organization for people with severe mental illnesses and their families, is leading efforts nationally to end the inappropriate and abusive use of physical restraints and seclusion in psychiatric facilities.
Rick Griffin, 36
November 11, 1998
Laura Hanson, 17
West Palm Beach, Florida
November 19, 1998
Mark Draheim, 14
December 10, 1998
Kristal Mayon-Ceniceros, 16
Chula Vista, California
February 5, 1999
Timithy Thomas, 9
Banner Elk, North Carolina
March 11, 1999
HOW MANY MORE WILL DIE?
In October 1998, The Hartford Courant published an investigative series on the abuse of restraints and seclusion in psychiatric facilities nationwide and documented 142 deaths over a decade. The Harvard Center for Risk Analysis has estimated that between 50 and 150 such deaths occur annually. Since the Courant series, the National Alliance for the Mentally Ill has steadily compiled new reports of abuses, including five more deaths. Four of the five victims were under the age of 18. And those are only the deaths we know about. How many more will die until Congress acts? NAMI applauds Senators Joseph Lieberman (D-CT) and Christopher Dodd (D-CT) and Representatives Diana DeGette (D-CO), Rosa DeLauro (D-CT) and Pete Stark (D-CA) for having introduced legislation to prevent more abuse and tragedies. We thank Senator Arlen Specter (R-PA) for his leadership also in holding a Senate hearing on the issue.