Reducing the Use of Seclusion and Restraint: The Experience of Seclusion and Restraint Consumer...

Reducing the Use ofSeclusion and Restraint:The Experience of Seclusion and RestraintConsumer Roles in Inpatient Settings

Policy SummitRoman Hruska Law Center

Friday, October 1, 2004Lincoln, Nebraska

Joyce JorgensonThe Jorgenson Group

Harrisville, NH

Module created by Bluebird, Jorgenson, Lane, 2003- NASMHPD S/R Training Curriculum

“Eight men jumped on me and wrestled me to the floor. They held me face-down on the floor, restrained me, and then shot me up [with] Thorazine. I then waited in restraints for hours until they thought my behavior was appropriate to be released. I remember begging with them like a dog to release me. I was totally powerless and at their mercy…As a survivor of sexual abuse, I personally have found the use of restraints on me more traumatizing than being sexually assaulted. Being put in restraints is a much longer, traumatic ordeal than being raped.” Marcia Kelly

(Lane et al., 2002)

The Experience of Seclusion and Restraint

The Experience of Seclusion and Restraint

“When I became aware of my surroundings again, I was restrained to a bed. I was still delusional. I thought I was being held prisoner in a third world country. I would fake having to go to

the bathroom, just so they would let me up and move around. I remember

fighting to try and get the restraints to loosen.” Cheryl Carnazzo

(Lane et al., 2002)

“I had never seen such a thing…a blue mattress with restraints. They strapped me in face down. I have a memory that they also gave me an injection, but that might have been from another time. I

remember whispering to the nurse, ‘What happens now?’…I was petrified

because all their behavior and equipment seemed so weird. She said,

‘Just try to sleep.’” Grace Nichols

(Lane et al., 2002)

The Experience of Coercive Treatment


“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”

Joseph A. Rogers(Lane et al., 2002)

“One of the things that doesn’t get talked about very much is the trauma of the staff. We talk about the trauma paradigm for our clients or people in recovery. But not very often in my 20 years of work in the field of mental health have I heard much about what happens to us, the workers and I think that’s an area where we need to do some work. I’ve seen some pretty traumatic things from when I first started 20 years ago. Some of those things still haunt me that I’ve seen.” female direct care staff

(Jorgenson et al., in press)


“They walked me to the other tie up room. Terror was inside of me. They pushed me on the mattress. The leather went around my wrists, my ankles. A straw in my mouth. Something bitter I must drink. Orange juice to wash it down. And then things were all mixed up. How can I describe what I remember? I can’t. There are no words.” Sheilah Hill

(Lane et al., 2002)



I’ve been injured from time to time. Nothing severe. Yeah, sometimes I get headaches. I get shaky.

Male direct care staff:

“When you get to that point you feel as though you have failed. It seems like you’ve missed something when you could have prevented it beforehand. I never liked doing that, but it’s about maintaining safety and you just never want that to happen….you feel like you’ve failed. There’s always something you could have seen earlier if you had been there a little sooner, if you had known the client a little better. You could have prevented the situation.” male direct care staff



“I spent six days with one arm twisted behind my head. This was done, I was told, ‘to

teach me a lesson.’ Hopefully my lessons will serve others. For perhaps more than a

decade anger and hate were constant companions.”

Bob Bennett

(Lane, 2002)


“The first time that I helped with a restraint, a four-point restraint, I walked out of the room

in tears because it was one of the most horrible things I had ever seen.” female direct care

staff




“When I was restrained, it was the culmination of escalated situations based on my feeling totally without choices, and not in control at all. [However,] it became a ‘war of words’ all about who had the power. I was restrained and forcibly injected. I did not speak to anyone for the next two days, and developing any sort of trusting relationship was seriously delayed.”

Tom Lane (Lane et al., 2002)


I know that after a couple of difficult incidents on a unit, I certainly felt like I had symptoms

of PTSD, about being hyper-aware when I walked to my car, because some of the things that I saw and that I was involved with were very traumatic. I think consumers talk about

what it is like to be in restraints, it is also traumatizing to put people in restraints in the

same way that I think it is traumatizing for soldiers to go to war and kill other people. We

don’t often talk about the impact of that either. Female direct care staff

IN MEMORIAM Michelle Sutton, age 15, Kristen Chase, age 16 Paul Choy, age 16, Aaron Bacon, age 16, Dawnne Takeuchi, age 18, Lorenzo Johnson, age 17, Carlos Ruiz, age 13, John Vincent Garrison, age 18, Bernard Reefer, Robert Zimmerman, Charles Lucas, James Lamb,

IN MEMORIAM Tammy Edmiston Leon Anger Charles Collins, Jr., 15 Jamie Young, age 13 John Avila, Danny Lewis, age 16 Nicholas Contreras, 16 Edith Campos, age 15 Matt Toppi, age 17 Chris Brown, age 16 Eric David Schibley, age 17

IN MEMORIAM Chad Andrew Frenza, age 16 Robert Doyle Erwin, age 15 Lyle Foodroy, Gina Score, age 14 Bryan Dale Alexander, age 18 Michael Wiltsie, age 12 Tristan Sovern, age 16 Robert Rollins, age 12 Anthony Haynes, age 14 Ian August, age 14

……and Counting

Crossing the Quality Chasm: A New Health System for the 21st Century

“The lag between the discovery of effective forms of treatment and the incorporation of the practices into routine patient care is unnecessarily long, about 15-20 years.” IOM

A National Call to Action: Eliminating the use of Seclusion and Restraint, May 2003

“The initiative to reduce the use of seclusion and restraint is part of a broader effort to reorient the state mental health system toward a consumer focused philosophy that emphasizes recovery and independence…Seclusion and restraint with its inherent physical force, chemical or physical bodily immobilization and isolation do not alleviate human suffering. It does not change behavior.” Charles Curie, Administrator SAMSHA

Consumer Roles in Inpatient Settings: Surgeon General’s Reports

Call To Action to Prevent Suicide (US PHS, 1999) recommended the development and implementation of peer supports and natural community helpers as resources.

Mental Health: A Report of the Surgeon General (US DHHS, 1999) recognized self-help as an important adjunct to traditional mental health services and concluded that self-help activities serve as powerful agents for change in service programs and policy.

Consumer Roles in Inpatient Settings: Peer Supports… an Emerging New Practice

Peer-run support services holds promise for improved outcomes, and is value added

for a public mental health system that is: is under-funded that fails to reach the majority of those

with mental illnesses that often delivers services that are

ineffective(Campbell & Leaver, 2003)

Integrate consumer choices at every opportunity

Create opportunities proactively! treatment planning (obvious)

Promoting cultural change through inclusion (not so obvious)

Service delivery systems reform Policy development & revision Program design/re-design Environment & physical design changes

Consumer Roles in Inpatient Settings:Involving Those You Serve

Utilize unique benefits of ‘experiential knowledge’ through peer advocates, peer mentors, and peer support

(Borkman, 1975)

Peers serve as role models, communicators, mediators, advocates, teachers, and legal protectors

Consumer Roles in Inpatient Settings:Why Hire Consumers?


Peers provide support from a perspective of experiential rather than professional authority

First hand experiences provide unique insights and analyses

Self-help, peer support, and self-advocacy are being recognized as components of wellness, recovery, and even treatment

(Curtis & Hodge, 1995)

Peers understand the need for reform and often have the initiative to begin the task of creating new approaches to care

Persons in recovery hired as staff at all levels promotes movement towards organizational culture shift!


Peer Specialists Participation in treatment team

meetings Facilitate peer support group meetings Provide individual peer supports Assist with discharge transition Teach community adjustment and

coping skills

Consumer Roles in Inpatient Settings:Specific Roles

Drop In Center Director Develop drop in center on grounds to

enhance socialization and recreational opportunities; safety valve

Assist with orientation for newly admitted persons

Facilitate monthly consumer affairs meetings, support unit government development and design

Administer consumer satisfaction surveys

Coordinate peer specialist initiative



Peer Bridger, and other Peer Mentoring Programs Provides support to individuals in institutions

3-5 months prior to discharge and 6 month to a year afterward in person’s homes

Provides intensive support through a balance of social, recreational, and skills teaching

Establishes linkages to community-based services and natural supports

(Mead, 2002)

Integrating consumers from the community in volunteer capacities

Self-help groups facilitate coping skills subsequent to stress (Silverman, 1985)

Peer ‘inreach’ from community-based peer run service and support agencies to provide self-help, self-advocacy, and integration of peer support group models (e.g. Schizophrenics Anonymous, Double Trouble in Recovery)

Examples: Copeland’s WRAP; NAMI Peer to Peer Training

(Mead, 2002)

Consumer Roles in Inpatient Settings:Using Community Resources

Director of Advocacy Services The “eyes and ears” Complaint resolution Attend treatment team meetings at

patient request Advocate & protect patients’ rights



Director, Office of Consumer Affairs Serve on key hospital committees

(Ethics, Performance Improvement, Risk Management)

Participate in development and refinement of hospital policies and procedures (focus groups & workgroups)

Reports to top-level hospital administration

Commensurate salary & benefits

Consumer Roles in Inpatient Settings:Consumers As Educators

Roadmap to a Restraint Free Environment for Persons of All Ages

Developing and Expanding the Office of Consumer Affairs

WRAP The Comfort Room


As we talked about communicating with the consumers, I had an overwhelming sensation of grief and guilt and realized that as a nurse I tell patients that I am going to keep them safe

and one way of doing this is to take from them anything that we see as dangerous such as shoe laces, belts so they can’t hurt themselves with anything that could be a weapon.


But when they are very upset and losing control, we come along with our restraint bag—

our bag of weapons and we do hurt them and use harsh words. It doesn’t make sense. “It’s crazy making when we tell consumers that we are doing this to help them be safe!”

Jane B. (Unit Manager)


“I did want to update you on an exciting experience last week. I was on the unit when a patient tried to harm herself, then swung and kicked at staff when they intervened. The staff called for assistance, and with help, engaged a manual hold on the patient and began the protocol for a leather restraint. One staff noticed cues that the patient was calm and may not be an immediate threat of harm.


The staff person dialogued with the patient: “Is there any way we can do this that we can keep everyone safe? Do you promise not to hurt anyone in ten minutes? The staff assessed the information to be credible and recommended that the team disengage the process….Lisa


“People diagnosed with mental illness are resilient and are more than passive victims of disease processes. Professionals who learn to collaborate with the active, resilient, adaptive self of the client will find themselves collaborating in new and rewarding ways with people who may have been viewed as hopeless by others who reify [to regard (something abstract) as a material or concrete thing] diagnoses and related prophecies of doom”

(Deegan, Ph.D., 2001).


Dear Joyce, I wanted you to know that I have only been in the hospital 1 hour, and already 7 people have come to me about the conference and how it changed their life,and one person said, "The train has left the station. We are already doing great things and we will continue to do even better."Another person used the word ‘patient’ and corrected themselves in front of others.“I don't know if I like the word consumer, but it's what people with psychiatric illness want to be called and it is their right to have us do that."


They talked about the profound change that occurred for everyone in the room on Wed. They said, "It was as though the earth moved and shifted inside all of us.”This was a life changing experience and I will never be the same again.There are already plans for a monthly workgroup. I am so thankful that you, Carol and Erica came to us now and are helping to shift the paradigm


I found the most valuable aspect of the training to be the self-awareness that was awakened in me, and the awareness I saw awakened in other participants.

As you know, our desire to obtain training was based in our commitment to eliminate restraint and seclusion,


but setting goals and achieving them are two different things, as you pointed out.

Your training showed us it can be done, that it has been done elsewhere, and I believe you built in us the internal strength to get it done.”

David K. Clinical Services Director

Benefits to Consumer Roles Anticipated Outcomes

Shorten hospital stays Lessen # of hospital admissions Improved social functioning Improved ability to cope Improved outreach to SMI population Improved employment outcomes Value added

In 2003, The President's New Freedom commission on Mental Health recommended in its 2003 report a "transformation" of the system and identification of "recovery as its legitimate goal. It called for the complete inclusion of consumers and family members as providers, advocates, policymakers, and full partners….(The President’s New Freedom Commission on Mental Health, 2003)

Consumer Roles in Inpatient Settings:Cultural Change


“The terror of confinement, the pain of restraint, and the wound to my soul made me want to stay as far away from the mental health system as possible. It didn’t matter that they might offer me something helpful; I didn’t want any of it if that horrible experience was going to be part of the package. “ Will Pflueger

The hospital’s culture dictates whether, in what

circumstances, and how often seclusion and restraint

interventions are used.” Networks, Summer 1999, Attributed to Robert

Okin, M.D. Former Commissioner of Mental Health in Massachusetts and Vermont

Exercise: My Organization Currently Is…


ECOLOGY: Formal Policies and Rules Resources The Unit Culture Attitudes Cultural Norms Physical Surroundings

Exercise: My Organization Currently Is…RELATIONSHIPS:

Direct care staff peer relationships Direct care staff to administration

relationships Direct care staff to consumer

relationships Administrative staff to consumer

relationships


Leadership: Inspires others to see their own potential Foster relationship building among all Challenge process not people Teach “there could be a better way”

attitude Remove barriers to possibility thinking Be a learning organization

•Exercise: My Organization Currently Is…• DISCUSSION• QUESTIONS: Which of the three areas, ecology,

relationships, and leadership, is most likely to support the reduction of seclusion and restraint at your facility?

Which of the three areas might struggle with these changes and why?

•

Consumer Roles in Inpatient Settings:Cultural Change

“It is rather impressive how creative people can be when restraint is simply not a part of the treatment culture.”

John N. Follansbee, M.D.Northern Virginia Mental Health Institute

Science has shown that having hope plays an integral role in an individual’s recovery.

(The President’s New Freedom Commission on Mental Health, 2003)

Consumer Roles in Inpatient Settings:The Goal of a Transformed System - Recovery

Hope is Priceless!

“Hope is the thing with feathers-- That perches in the

soul -- And sings the tune without the words -- And never

stops -- at all --”

- Emily Dickenson

Consumer Roles in Inpatient Settings: Hope, Transformation, & Recovery

“…as a way of thinking about goals such that we see ourselves as being able to find routes to our goals (pathways thinking) and to motivate ourselves to use these routes (agency thinking)”

(C. R. Rick Snyder)


The hope instilled in people recovering from mental illnesses through the dynamic exchange of

peer support…

(Campbell & Leaver, 2003)


“A truly mature mental health system would be one in which it is taken for granted that consumer/survivors are included and actively involved at all levels of the mental health service delivery system, including the uppermost levels of management and policy making.”

(McCabe and Unziker, 1995)

Contact Information

Joyce JorgensonThe Jorgenson Group5 Sargent Camp RoadHarrisville, NH 03450(603) 924-8381 phone(603) 924-8389 fax

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