The biggest barrier to my recovery from what had always been diagnosed as schizophrenia or schizoaffective disorder was, I regret to say, the mental health system and psychiatry itself. Yes, for many decades I had been told I was ill and needed interventions like medications and the hospital for my “brittle psychosis”. I was told even that obvious brutalities, like 5-point restraints and seclusion in locked freezing cold cells, devoid of anything but a slab in the wall and a grate in the floor for drainage, were helpful treatments for my condition and not the torture and punishment that I felt them to be. No one or very few people treated me with kindness or any understanding or with the idea that there was hope for recovery, even though I had a genius level IQ and had shown some significant talents in many areas, and still did even when sick. They seemed bent on only one thing: coercion and control, and to prove that they were able to dominate me, and the other patients. If you dared to question their superiority or their information you would either be dismissed as delusional or worse, treated with more abuse.

Needless to say, I lived up to these expectations for many years, and i did not get better or even come near to recovering. In fact, before I took the drastic step of giving almost all I owned away and leaving my home, the state where I had lived for all my life and moving to another 100 miles away, by myself, knowing no one and nothing about it, I ended up again in the hospital and almost did not make it out. Not only did the guards there attempt to strangle me, but the doctor was convinced that I should be committed to the state’s one public facility that provided long term treatment…from which I might not leave for a long time.

Instead, I managed to play the game this sadistic doctor insisted on, and was finally discharged from a city hospital that had spent weeks doing nothing but torturing me, daily throwing me into their seclusion cell or shackling me in restraints …for no better reason than that I “disturbed the unit milieu”.

But discharged I was, with newly acquired PTSD from my treatment there, and within a week I was two states away, safe for the first time from these ministration that had inflicted on me nothing but damage.

It was here, in this northern state that I finally began to heal, with the help not of the mental health system but of a non-licensed therapist (she has a psychotherapist license from the UK) who taught me Marshall Rosenberg’s non-violent communication or NVC, and is the first person I felt sees me for who I really am, not “just another schizophrenic.” Even though I still take medications, I am slowly tapering off of them and doing well after decades on the massive doses I was told I absolutely could not survive without. Why? Because I’m proof of the fact that you can recover from life-long “mental illness” when given enough unconditional acceptance and understanding. When someone sees you and understands you and does not dismiss you, crazy as you might have been told you are, a lot of the craziness just falls away and you become another human being, no more and no less.

There is no normal, there is no abnormal. We are all just human beings trying to get along in society and often society is sicker than “we are” in its demands that we conform to some impossible standard. Maybe my experiences — hearing voices, thinking things that might be called delusions, etcetera — are not common but they are not outside the realm of human experience either. We should rejoice in our differences as in our similarities and look for common cause between us, not find reasons to fear what is Other in each other. Love really is what it’s all about. Maybe that sounds squishy and sentimental, but have you ever met someone diagnosed with schizophrenia who says they both love themselves and feel that they are adequately loved in the world by others?

Health, Institute Of Living, Seclusion and Restraints

Institute of Living, 2013, Torture and Illegal Confinement Part 2

February 11, 2018 Phoebe Sparrow Wagner 1 Comment

Restrained at the Institute of Living 2013

Continued from previous post:

Here’s what SAMHSA the substance abuse and mental health services administration publication has to say on seclusion and trauma:

“Studies suggest that restraints and seclusion can be harmful and is often re-traumatizing for an individual who has suffered previous trauma…

“Further, there is a common misconception that seclusion and restraint are used only when absolutely necessary as crisis response techniques. In fact, seclusion and restraint are most commonly used to address loud, disruptive, noncompliant behavior and generally originate from a power struggle between consumer and staff. The decision to apply seclusion or restraint techniques is often arbitrary, idiosyncratic, and generally avoidable.

“Moreover, some studies indicate that seclusion and restraint use lead to an increase in the behaviors that staff members are attempting to control or eliminate.

I have been traumatized, and not just by hospitals. I was date-raped three times in my twenties and experienced traumatic domestic abuse. The cover sheet on the PAD made very clear that due to these trauma issues, I could not tolerate being secluded or restrained without severe consequences: regression and serious worsening of symptoms. Unfortunately, as soon as the staff saw fit to use physical methods of coercion and control on me, that is to say, punishment, from the first time a staff member grabbed me, all bets were off as to how I would behave. I certainly ceased improving, and my symptoms went downhill. Did they really think they were being kind and compassionate? Violence begets violence….

I tried to get help even when on the unit, at least I tried when I was free to make calls or leave my seclusion, err, forced-voluntary “time-out” two-week-long stay in the so-called side room” last winter. I do not know how many times I called the patient advocate office, but the sole time anyone made contact was when she came to hand me some paperwork – I believe I was actually in 4 point restraints at the time – some papers I could not read about a forced medication hearing they would be holding. I needed her advocacy, but she never responded to my panicked called. I wanted her help, but she never came by to ask me what I needed. She was less than useful, the fact that I had to go through her, and her refusal to respond contributed to my ongoing panic and desperate feelings of aloneness and depression. No wonder Dr. Banerjee tried to force me into ECT (about which my feelings of horror and revulsion were stated clearly in my PAD).

And where did the ECT discussion come from at all? My PAD states that I would refuse ECT under any and every circumstance. My brother would be my conservator if Banerjee had sought to go down that road, and he would never have made any decision to counter my wishes on that subject. If Banerjee really read my PAD, he would have known that. He told me that “Dr Mucha and I have made the decision to force you to have ECT.” I recorded the conversation in my journal immediately after it happened and Dr. Banerjee presented it as a two-man decision only, one that I had no choice in.

Regarding ECT and my so-called “depression,” Sanjay Banerjee MD had stopped my 75mg of the antidepressant Zoloft during the first or second week I was there. “Do you really need that?” he had asked, “You don’t seem depressed to me.” Obedient, and in any event glad to get off any medication at any time, I nodded my head, assenting to the change. At least, I thought, if things go haywire, it will not be due to self-fulfilling prophecy, a doctor looking for symptoms he expects to find and conveniently finding them. And at least he will know the reason.

A week later, instead of reinstating the Zoloft, Banerjee blamed my sudden “depression” on my refusal to take Lamictal, a drug I had not taken in 6-9 months. Now he was applying to force me to have ECT, something I was terrified of, convinced it caused deliberate brain damage.

It was this threat, and the brutality with which the decision was made, that started the downhill course of my IOL stay.

The very next day, all hell broke loose. When I entered the conference room, I pushed some important notes I needed Dr Banerjay and Laurie to read across the table in front of them. They refused, claiming that I threw the papers at them. Instead, Dr Banerjay proceeded to berate me, and told me how he had consulted with other hospitals and providers and had read my records against my instructions and Advance Directive, thus violating my HIPAA rights. Moreover, he threatened me with a behavioral treatment plan that would not permit me to do art or writing unless I “behaved.” I hit the roof, telling him I would sue the hospital and complain to JCAHO, then summarily left, slamming the door, an act that stemmed from feelings of utter impotence, because I couldn’t actually say in words anything more effective.

It could have ended there. I could have been left alone, to cool down and calm myself. But no, Dr. Banerjee had to write for stat meds again, and even though I was on the phone and trying to find someone to talk to, to calm myself, I had to be physically dragged off the chair I sat on, away from the phone and brought to the floor in a physical struggle (because they had attacked first, i.e. physically grabbed me, I defended myself, instinctually). They could have waited for me to finish the call. They could have waited to see if I calmed myself. I was not hurting anyone. I did not threaten anyone or myself with harm. ALL that I had done, in terms of physical threats was yell at the phone and refuse to take a pill. Furthermore, it was done and over with. I had left that area and gone to my room. I had then come back and now sat on the chair by the phone, speaking to my interlocutor on the other end. There was no need to pick a fight or encourage a struggle. A wait-and-see policy could have successfully guided things to a better resolution not only for the situation at hand but for my entire hospital stay. As a famous poem by Dylan Thomas ends: “After the first death, there is other.” Once the IOL staff decided to use restraints, there was no going back. The first time broke everything. So, they used them again, and again, and each time more freely and without justification but for convenience and punishment.

Some final points:

CMS regulations on use of Restraint and Seclusion

Restraint or seclusion may only be imposed to ensure the immediate physical safety of the patient, a staff member, or others and must be discontinued at the earliest possible time.

At no point in my stay was anyone ever in immediate physical danger except me, from the staff who were assaulting me…They may have claimed that I bit and fought and resisted, but this was always in response to their manhandling me first. Always. In fact, my medical records show they had restraints re-evaluated and approved while I was sleeping. They even discharged me from the hospital directly from restraints and seclusion, on a day when the usual attending physician happened to be out of town.

This means that IOL’s definition of seclusion as being “kept alone in a room to which the door is locked” is wrong. I protested that I had been secluded all along, for a good two weeks before they instituted formal seclusion. I was not violent or self-destructive, and certainly not imminently dangerous to self or others…Never was anyone in immediate physical danger.) Yet the IOL allowed staff to abuse me and seclude me because I was loud and made people uncomfortable…I was surely not the first person to be so treated and brutalized. It remains traumatizing to this day, and I know it is still happening to patients at the IOL even now, because no one can stop them if they don’t know it is happening. Due to this sort of brutal treatment, my PTSD escalated. I think about what happened there and I can’t stop trembling. I have nightmares every night that literally keep me from sleeping.

“The highest price of all is the price paid by the people who are restrained: their recovery is stalled by a practice that can disempower them, break their spirit, and reignite a sense of helplessness and hopelessness…” from Recovery Innovations

Worst of all, using restraints doesn’t work to make either the patient calmer and safer or the unit a calmer safer environment to work in for staff. In truth, things only go from bad to worse once you restrain an unruly patient…Violence only begets more violence…Moreover, when I was another hospital, I was told by one of their mental health workers that she had wanted to experience the process of being four-pointed so she could identify with patients. She was told no, because as the aide informed me, hospital administrators feared it would be too traumatizing.

Restraints are traumatizing, let’s face it, in order to restrain me the manifold times I have been brutally restrained, putting up no resistance whatsoever, even the most jaded and brutal should have felt a twinge of conscience and questioned why he or she was doing. Unless they had become so inured to cruelty that they no longer considered it degrading and obscene to spread-eagle a naked woman, shackling her legs to the bed posts, so hardened to sadism that they did not consider tying her wrists to the underside of the bed as torture, only a mild form of discipline, meted out in order to teach her the lesson they had decided to teach her…

I hope you manage to read this letter and look at the supporting materials. You could learn a lot. You have more power than I do in this world, and could change things, if you know they are happening and are wrong. I beg you to think about what I have written to you. The IOL is not an isolated case. Brutality happens in nearly every psychiatric ward and hospital in Connecticut, and I believe this is the reason: As long as seclusion and restraints are permitted in any fashion, brutality and abuse will continue and at rates that are higher than where they are eschewed.

The problem is not that there may remain some exceptional cases who, it is claimed, will need to be restrained, but that someone somewhere will start finding such exceptions and boom, we’ll be right back where we started, with abuse and mistreatment of the most vulnerable. I believe the only way to stop the abuse of seclusion and restraints is to simply stop using them, period. Killing in self-defense is a good defense in law, and every decision to use restraints should be evaluated with similar strict thinking. Say No, we don’t go there, first, and then if done, know that it was a violation of the law and harmed the patient above all else, but under some conditions, this is the lesser evil compared to what might have eventuated without their use.

Now hospital workers are allowed to use restraints and seclusion as legitimate forms of “treatment. But when you permit staff to use violence against even one patient, it imbues their culture with an acceptance of violence as a treatment modality rather than something criminal. Restraints help no one. They are always retaliatory. Always discipline and punishment. Oh, in the short run the unit may seem quieter and easier to manage, but in the subsequent days, when the prisoner in restraints re-enters the community more chaos than ever may ensue.

Please help me. Do something about it today.

Health, Institute Of Living, Seclusion and Restraints

Institute of Living, Hartford CT, torture and illegal confinement in 2013

February 11, 2018 Phoebe Sparrow Wagner 6 Comments

Part One

4-point restrained at the Institute of Living 2013 routinely for 19 hours or more.

Let me introduce myself. My name is Pamela S. Wagner, and I was for most of my 65 years a resident of Connecticut. I have a long history diagnosed with serious mental illness and have been on disability for many years because of it. Five years ago, I was admitted to the Hartford Hospital’s Institute of Living on a 14-day PEC. I would like to tell you about some of the grotesque brutalities that transpired there and the egregious “treatment” that passes for care in that hospital.

Ever since I was discharged from the Institute of Living in February 2013, to which facility I had been committed as an involuntary patient under an order known as a Physicians Emergency Certificate. I have felt too terrified even to read the partial chart which the Connecticut Office of Protection and Advocacy obtained for me. Indeed, every time I recall what I am able to, or reread the brief nursing notes about what was done to me that winter at the IOL, my heart races unbearably, my body sweats and shakes and I start crying. Even so, because of trauma-induced amnesia, I remember the month I spent there only vaguely and in “snapshot” or flashbulb-like moments” of clarity. It is only now that I have acquired these few records, and learned some of the details of what happened that I’m finally able to put some of the pieces together.

Before I say anything further, I want to say that I believe that I was grievously injured by the “treatment” I received on Donnelly 2 South, and that what the staff did to me was not only unethical and cruel but that it crossed the line into illegality more than once.

I was admitted to Donnelly 2 South, and right from the first I made it clear that I wanted to witness their searching my knapsack. I wanted to know what they confiscated from me. They assured me that, Yes, of course, that is our policy, Don’t worry, Pam, you will have ample opportunity to watch us search your bags… I calmed a bit and followed a nurse to a closed room to do an intake interview. When she released me to the Day Area, I was shown to my room, where I found on my bed, my already searched knapsack and bags. Needless to say, this upset me greatly and I made my feelings known, which did not endear me to anyone. I let the charge nurse know that I felt violated and that she had openly broken a promise and my rights, posted prominently on the hospital wall.

As the Donnelly 2 staff learned, I had arrived prepared with a detailed Psychiatric Advanced Directive and I made it very clear that my online electronic medical record was accessible from any computer. I made the Read-Only access code available to the doctor and nurses. That included documents such as my narcolepsy diagnostic consult and special documentation proving my need for a higher than usual dosage of Ritalin, written by my former sleep specialist (also my psychiatrist from 2000-2009.) Included as well was a letter she wrote to my present psychiatrist, Dr. C, explicitly stating her conviction that I do not, and never did have a personality disorder, borderline or otherwise, a conviction that Dr C also held.

According to Dr. Sanjay Banerjee, the doctor who first took over my care, he read every page of these and all the other documents that I brought with me. That is what he told me. Moreover, when he spoke with Dr. C, my outside psychiatrist, he brushed off my concerns about anyone misperceiving me as having a personality disorder. My brother, P, himself a psychiatrist, brought the same matter to the fore again when in discussion with Laurie Denenberg, LCSW. Again, her response was much the same: “Personality disorders are not a part of the picture here. We intend to honor her PAD. We are glad that she has had the foresight to prepare such a document.”

Nevertheless, Amy Taylor, MD, the doctor who took over my care after Jan 27^th decided to summarize my psychiatric history from this stay in words such as these: “long psychiatric history of schizophrenia, paranoid type, PTSD, and personality disorder NOS with borderline traits.” I was treated for four weeks for an active psychotic disorder. No one could know – especially with the significant additional diagnosis of PTSD, whether or not I had any personality disorder, given the two Axis I diagnoses already present. I believe she decided to use this diagnosis as a way to “justify” the brutality that she had ordered to be used to punish me during the hospitalization I write about.

As I said, I was on the Donnelly 2 unit for almost a month. But I was admitted on January 10, 2013, right into to seclusion because of putative “blepharitis.” They called it “infection precautions” but never took a culture of my swollen eyelids to determine if there truly was any infection present. They simply said it had to be blepharitis – as if saying so meant that it was so (but the fact is that blepharitis generally speaking is a benign non-infectious condition, and one that doesn’t produce massive swelling in the entire facial region). There were other factors however that accounted for my swollen face: prime among them the self -inflicted second degree burn on my forehead the size of a half dollar. Knowing this, the fact that my face had swelled to 1½ its size should not have surprised anyone. Blepharitis? The doctor was looking for zebras instead of seeing the common nag right in front of her…

I know I was a difficult patient. I was loud and paranoid and hard for some staff to deal with. That is precisely why I wrote out my Psychiatric Advance Directive the way I did, with explicit and detailed instructions for how best to deal with me when I was upset… When ill, I am frightened, paranoid, and hostile, which makes me easily roused to irritability. I know this, from a distance as it were. But knowing this now does not mean I was in full control of my behavior at the time.

On Feb 5^th, I was being held incommunicado in the so-called “side room”, which, when I called it seclusion, the staff insisted it was not so. That afternoon, I simply walked away from it. I had had enough of them saying it was not seclusion, then preventing me bodily from leaving it. So, when I could do so without someone actually wanting to fight me, I walked away.

I proceeded to enter the unit and walk down the hall to the end and looked out the window. I took a deep breath, heard staff behind me, and sauntered back to the proper end of the hall, the “lost end” where they kept anyone from seeing me or knowing what they were doing to me. Once I got there, they descended upon me, some staff I knew, but most I did not. I did not bother to look at who was doing what to me. I simply lay passively on the bed and put my arms where they could do what I knew they would do. Tightly, they shackled my wrists out past my hips so there was no play in the restraints and I could not turn on my side or do anything but lie stiffly on my back. At the same time, others jerked my feet apart and just as tightly shackled my ankles to the lower corners of bed. Then came the coup de grace. They twisted me over onto my side somehow, pulled down my pants, and injected me with three drugs: Haldol 5mg, Ativan 2mg, and Benadryl 50mg. Why, except as punishment I do not know. I had, just a half hour before, been doped up on involuntary Zyprexa 10mg. Then they walked out, leaving someone just outside the door for the usual monitor, and did not release me for 19 hours, despite the fact that I was sleeping much of that time.

Of course, this was punishment. The very fact that they told me it was “not punishment” only “what your behavior brings on every time, Pamela,” proves my point. At first and usually they only said, it was because I “didn’t follow directions” so if they were not punishing me, what were they doing? They most certainly were not following Centers for Medicare and Medicaid regulations for the use of Restraints and Seclusion only in cases where a person is in imminent danger of harming her self or others. Indeed, the best they could do, when I protested, passively, saying just those words, was to respond, “You are not safe” as if that proved somehow that I was in danger or posed any imminent threat to the safety of anyone.

They always restrained me in an X, spread-eagled so tightly I couldn’t move a muscle. They never permitted bathroom breaks or even let my hands free to eat, so several times I had to pee and even defecate in my clothing. I would fall asleep rapidly after those three injections–whether I was restrained while calm or not, it was routine: punishment needles in the buttocks of Haldol 10mg, Ativan (up to 5mg at one time) and Benadryl 50mg—and then they would invent reasons to maintain me in restraints even after I was asleep for hours. When I woke, hardly dangerous to anyone, they would grill me with questions that I was too groggy to answer, and they would use my inability to respond as reason not to release me.

Later in the evening on Jan 5 or 6th^th, for the second time that day, they restrained me, this time for throwing half a graham cracker at the wall. Then they left me like that for hours, even after I fell asleep. In point of fact, I could never earn my way to release from restraints by good behavior or quietly, calmly asking for release. Of course not, because I hadn’t done anything to “deserve” them in the first place. They always refused to release me, always, until I cried, “Uncle” when they told me to.

As to those vaunted “shows of force” what does anyone expect? Presented with a cohort of threatening staff personnel I saw only one thing: an impending assault. I know they anticipated my panic; it said as much in my chart. Isn’t that the point of a planned “show of force” – to induce fear and panic? (which when you think about it is grotesque…What sort of person wants to induce fear and more panic in someone who is by definition already terrified?) But why else do it? So why should it be any surprise, when I defended myself as they grabbed me? When they stuffed me into a body bag and were trying to tighten the straps, surely you can understand why anyone would bite the hand of an attacker whose digits came near. It was a matter of life and survival instinct…

But none of it should have happened. My PAD explained in exquisite detail exactly what to do and what I respond to better than fear tactics and force. In fact, it is beyond comprehension, knowing that one of the admission diagnoses I came in with was PTSD, how the director of patient care at the time pre-approved on paper the emergency abrogation of my PAD and a “just in case they are needed” use of restraints and seclusion. Why didn’t he counsel the person asking for this advance “right to restrain” to do instead all in his power not to restrain me and to work with the PAD instead?

TO BE CONTINUED… SEE NEXT ENTRY.

Abuse, Health, Seclusion and Restraints

Five Point Restraints At Vermont Psychiatric Care Hospital (cont)

November 23, 2015 Phoebe Sparrow Wagner 6 Comments

After they had me trussed up in restraints…No, let me back up a bit, because it was not that easy…Hannette was the point person, shall we say, the person who had my head between her hands and was cradling it, “oh so gently” as she “oh so soothingly” commanded me to CALM DOWN RIGHT THIS MINUTE!” Again and again, she subjected me to these absurd demnds as if I could possibly do so upon her order. And as if I ever would do anything but attempt to writhe away from her clammy awful grip on my ears that nearly deafened me to her voice even so.

Finally the job was done and they had fastened a thick plate of velcro across my chest so I could not even sit up or do more than bend my neck a bit to see their handiwork, briefly, before i lost strength and had to lie back down. But I was emotionally overwrought with the situation, and what had happened in the space of only minutes.

WTF? How could this have happened when all I ever wanted was an Ativan to calm down and help me speak? And now what?

But they just trooped out, with Annette leaving last, saying, “You will tell us in WORDS when you are safe enough to be released, or you will remain in restraints.” She then departed too.

Although two monitors were posted silently in the adjoining room, I could not see them for my position, nor were they permitted to speak to me, as I knew from prior experience. I let out a scream that echoed through the empty chamber like a banshee howl but it made no difference. Yes, I could hear Chelsea from somewhere, — a sweet female staff member who remembered my Advance directive and the other times I had been restrained — saying, “Pam, take a deep breath, try to stay calm, I am here, you are not alone…” And I mentally thanked her. But as soon as I could remember that she was there, she was taken away, removed by someone who was told not to talk to me….and so it went. A Dr. Lasix came to me within the half hour and told me he wanted me to come out of the restraints as soon as possible but I would have to agree to talk with him. What did I have to say to that?

I could not respond with a shake of my head or a simple nod so I remained silent. He shrugged and left.

Several people attempted to engage me in conversation, but as no one phrased their comments as Yes or NO questions, I had to remain still. I was not unwilling to answer, simply unable to. But time and again they told me I was “unresponsive” or non-compliant, though I was calm and had been rewarded with the requisite assessment to possibly come out of restraints every fifteen minutes. But no one let me, because they would not let me answer their questions without speaking aloud.

The hours passed. First one then two then three. Finally the nurse Jennnifer decided to relent and allow as how I might answer the safety questions with a shake or nod of my head.

“Will you remain safe and not hurt anyone?” she asked me, standing above me.

I nodded my head.

“Will you remain safe and not attempt to harm y0urself?”

I nodded again.

Will you get up go back to the unit to and to your room and continue to behave safely if we let you out of restraints?”

Nod nod nod.

Jennifer seemed happy with my responses but also at a loss as to what to do with them. She paused. “Okay, thank you Pam. I have to go back and confer with Hannette and see if she will agree to take you out of restraints now that you have agreed to be safe.”

She left, turning her back, promising to be back within a few minutes.

Instead, it took a good half hour, and when she did, both she and Hannette arrived with a plan. “We have decided that we want to free up one hand and you will write a safety plan with the free hand. Then we will approve it and if it is adequate we will see about taking you out of restraints.”

I frowned. Even as she spoke, Hannette had moved to the end of the gurney where my stocking feet lay exposed. Her belly squished against my toes and soles of my feet, and I felt an immeidiate disgust and worse. I felt instant revulsion, as if I were being deliberately molested by someone who knew I was helpless to resist. So I kicked at her mightily. If I could have spoken in words I would have yelled something too, like “You effing …something or other…!” but alas, I could say nothing in protest, only scream, and kick. This did have the effect I wanted of getting her to stop and move away. Someone told her to move past me at the head of the bed next time and she did…

But the safety plan writing thing was their way of upping the ante abominably. How dare they? They had already illegally kept me restrained in FIVE points for far longer than necessary, just because they wanted to prove a point and force me to speak. without even offering me Ativan to calm down let alone to promote speech. Now this??? I flat out refused. And so somewhat triumphantly they trooped out, leaving me alone again, still in restraints at 6:00 o’oclock in the morning.

I knew I had to remain as still as possible to earn yet another assessment within the next fifteen minutes. But my muscles and veins hurt becuase I had remainedstill for so many hours, and no one had done any range of motion exercises on me, actively or passively. I was becoming afraid that I would develop a blood clot if I did not move my limbs on my own, and no matter what they interpreted it as, I began a methodical program of movement. I carefully circled each leg ten times in each direction, the restraints clanking as I did do. Then I bent each knee up and down, up and down. Ditto with my arms, until I was satified that I had exercised them at least a minimum and could relax into the required absolute stillness for the next fifteen minutes so I could earn an assessment.

Finally, Jennifer returned a final time. But this time it was only to tell me that they were leaving for the night. “First shift will have to take you out of the restraints. It is too let for is now.”

when end I herd this, I let out a bnshee scream of exhaustion and utter frustration, but it was too no avail. Only when first shift finally came on and found me still in restraints at 7:00 am did they relent and give me Ativan and take me out by 7:30.

Health, Health Care Reform, Psychiatry, Seclusion and Restraints

Open Letter to Kathryn Power of SAMHSA

August 9, 2015 Phoebe Sparrow Wagner 9 Comments

Dear Kathryn Power,

In May 2014, mute and psychotic, I was taken to Hospital of Central Connecticut in New Britain’s Emergency Department by ambulance. My visiting nurse, in concurrence with my outside psychiatrist, had called 911, concerned about my safety and my ability to function because I had not spoken for weeks and was not taking adequate care of myself. I was not agitated, instead, I was unable to speak and slowed down rather than anything else.

More than a year has passed since then, so instead of relying on memory, I will paste here what I wrote shortly after my subsequent hospital stay, with edits for clarity and concision. Some has been taken from the secret journal I kept in that hospital, a journal which I was forced to scribble on pieces of torn-up brown paper waste basket liners, surreptitiously mailing them to a friend immediately the moment I finished writing. I had to do it this way because a housekeeping staff member had told me that nurses instructed her to throw out everything in my room, including first class mail, each time they found a reason to seclude me, which was frequently (nearly every day in fact, and sometimes more than once a day.)

Hartford COurant Article (that won’t be) about Michael E Balkunas, MD, Chief of psychiatry at HOCC

April 22, 2015 Phoebe Sparrow Wagner 3 Comments

Patients placed in Seclusion or Restraints are to be debriefed afterwards. To see standards of care, see below this reprint article.

I moved to Brattleboro Vermont on February 4, 2015, leaving my home state of Connecticut where I’ve lived for nearly 60 years. l had to move because of the horrific psychiatric abuses I experienced in Connecticut hospitals and my fear that if ever I were hospitalized again I would be killed.

I feel guilty, however, just getting out without accomplishing something to stop what continues to happen in Connecticut psychiatric units and hospitals.

The experience of mechanical four-point restraints – leather cuffs that are tightened around the wrists and ankles to immobilize a patient to a bed – or being isolated by force in an often freezing seclusion cell is almost universally terrifying. Nevertheless, both cell and/or restraints are routinely employed to curb loudness and undesirable behaviors at the Hospital of Central Connecticut on Grand Street in New Britain. I know this because I was subjected to both seclusion and restraints multiple times in the spring of 2014, despite a diagnosis of chronic paranoid schizophrenia, as well as PTSD that was triggered by precisely this sort of thing.

Bizarrely, the hospital psychiatrist, Dr Michael E Balkunas, treating me at HOCC challenged my PTSD diagnosis. “Patient misperceives her treatment as traumatic,” he wrote in my chart. Well, maybe so, but I don’t know how I can be accused of misperceiving three entire days callously abandoned alone, tied to the four posts of a metal bedstead at U-Conn’s Dempsey Hospital (for trying to escape the locked unit) as anything but brutality, even if it was in the 1990s. I also think it is nearly by definition traumatic to be forced to defecate in one’s own clothing while tied to a bed which is what they did at Hartford Hospital’s Institute of Living in the winter of 2013. This was after I was told to lie down and place my own limbs in the leather cuffs (“as a consequence but not a punishment”) for walking away from the very same “Side Room” that I had just been assured was “not a seclusion room unless you call it a seclusion room.”

Again, maybe I misperceived being grabbed and held face-down and nearly suffocated numerous times by staff at Yale Psychiatric Hospital in August 2013, who injected 10-20 milligrams of Haldol, a known drug of torture. Maybe this was just kindliness that I misunderstood as traumatic, maybe it was merely a “psychotic misperception” on my part? Maybe, and maybe not.

My New Britain chart records that I was admitted to that hospital, and to the IOL and others with a detailed Psychiatric Advance Directive, the first page of which states that seclusion, four-point restraints and forced medication invariably result in regression to “primitive states and severe worsening of symptoms.” It also makes several concrete suggestions how better to deal with me when I am upset. Even though I spent many hours on this document, Psychiatric Advance Directives have no legal clout in Connecticut and doctors can and do ignore them freely.

Perhaps because of this, HOCC staff literally forced me (“escorted me”) to seclusion and/or restrained me again and again. They took to stripping me “for safety’s sake,” and even though I put up no resistance, they had the male guards spread-eagle my limbs while still naked and put restraint cuffs on without even covering me.

Is it any wonder that what resulted was someone who would wash her hair in her own urine, defecate on the floor of her room and smear feces on the wall? Yet Dr Balkunas, the director of W-1, the general psychiatry unit at HOCC claimed that my trauma was imaginary. Why? Because treatment cannot be traumatic. He simply never got the connection between my horrendous decompensation and his so-called “therapy.” Maybe he never appreciated that he was torturing me, like a person who ripped the wings off butterflies as a child. Someone like that would not have understood how those creatures suffer either.

——————–

These are the NURSING De-Briefing standards for after restraints and/or seclusion:

APNA STANDARDS

DEBRIEFING AFTER RESTRAINTS/SECLUSION

Standard: As soon as possible, following the release from seclusion or restraint, the nurse, the person and others as appropriate should participate in a debriefing.

– See more at: http://www.apna.org/i4a/pages/index.cfm?pageid=3730#Release

Intent: A debriefing is done with persons who have been secluded or placed in restraints to:

Discuss and clarify any possible misperceptions the person may have concerning the incident.
Ascertain the person’s willingness to involve family or other caregivers in a debriefing to discuss and clarify their perceptions as well as identify additional alternatives or treatment plan modifications.
Support the person’s re-entry into the milieu.
Identify alternative interventions to reduce the potential for additional episodes.
Hear and record the person’s perspective on the episode.
Ascertain that the person’s rights and physical well-being were addressed during the episode and advise the person of processes to address perceived rights grievances.
Address any trauma that may have occurred as a result of the incident.
Modify the treatment plan as needed.

NONE of this was EVER done, ANYWHERE, in any hospital I have ever been in. Why? Because they all knew perfectly well what they had done to me and WHY…Not because I was dangerous to anyone, but as punishment…Naturally they did not want me to have a chance to tell anyone.

– See more at: http://www.apna.org/i4a/pages/index.cfm?pageid=3730#Release

Art, Health, Seclusion and Restraints

Woman, thrown into seclusion and abandoned – New Trading Card

Image April 11, 2015 Phoebe Sparrow Wagner 11 Comments

Woman Abandoned to Seclusion Cell In New Britain General Hospital's W-1 Psychiatric Unit — Woman Abandoned to Seclusion Cell In New Britain General Hospital’s W-1 Psychiatric Unit

Abuse, Health, Michael E Balkunas MD, Seclusion and Restraints, Truth

Article about Michael E Balkunas,MD !

February 5, 2015 Phoebe Sparrow Wagner 8 Comments

I feel guilty, however, just getting out without accomplishing something to stop what continues to happen in Connecticut psychiatric units and hospitals.

Abuse, Michael E Balkunas MD, Seclusion and Restraints, Truth

Google Review of Michael E Balkunas, Unit Chief of W-1, Adult Psychiatry, Hospital of Central Connecticut

January 27, 2015 Phoebe Sparrow Wagner 6 Comments

NOTE: THIS may be Dr Michael E Balkunas’s forgotten relative, also apparently an MD or he plays one on TV, I dunno! All I know is that the men look amazingly alike! They could be cousins like the twins on that Patty Duke show many many eons ago…What is important to remember is that they DO share a certain number of aberrant genes, and I believe that one of theirs leads to sadism…

(Note that My GOOGLE Review (edited) follows)

How very similiar Michael and Charlie look...and and no wonder, since they share the same sadism genes! — How very similar Michael and Charlie look…and and no wonder, since they share the same sadism genes!

In May 2014, Michael E. Balkunas, MD, chief psychiatrist of the W-1 unit of the Hospital of Central Connecticut in New Britain, angered by my rejection of him because I could not speak (he refused me the use of any writing materials) decided to diagnose me with Borderline Personality Disorder despite having asked for in-put from my family and my outside psychiatrists who all stated that no such BPD or any PD symptoms ever existed. He did this despite my having been admitted with a decades-long Axis 1 diagnosis of paranoid schizophrenia (and with PTSD since 2009 due to hospital brutality and abuses).

I believe he added the PD diagnosis in order to justify the implementation of an inhumane Behavioral Treatment Plan which resulted in four-point mechanical restraints and the use of a horrific and freezing seclusion cell. As my Advance Directive stated clearly, even at the time, none of these modes of “treatment” in the past ever led to anything but disaster.

At HOCC I was repeatedly secluded and even restrained, naked in a spread-eagle position, in 4-point leather cuffs for many hours, yet never was this because of any behavior indicating “imminent danger of causing serious bodily harm to self or others” as the Centers for Medicare and Medicaid require. They did this to me always and only because I was too loud, or because I disrupted the unit “milieu.”

Before I was double-locked into one of W-1’s soundproof isolation cells, the nurses might have the male security guards strip me naked “for safety’s sake.” No matter how compliant I was, they always injected me with three “punishment drugs.” Even when I said I would take them orally or offered my arm, they could choose to push me onto my face on a bare mattress, forcibly hold me down until I couldn’t breathe, and administered them in my buttocks.

I informed the guards about CMS rules regarding appropriate uses of seclusion. To their credit they seemed taken aback, but in the end they were always willing to follow orders and to inflict pain in order to ensure my rapid compliance.

Dr. Balkunas insisted again and again on the diagnosis of BPD yet he never treated me with any modality but antipsychotic drugs and never wrote about my exhibiting any BPD symptoms in his notes. In fact his whole stated rationale for starting commitment procedures to the Connecticut Valley State Hospital was that “antipsychotic drugs take time to work.”

The staff of Nurses and Mental Health Technicians at New Britain General Hospital W-1 and most certainly Dr. Michael Edward Balkunas, Adult Psychiatry Unit Chief, must to be re-educated about the evils of employing punishment or torture in mental health care. They should be given, in addition, many hours of intensive in-service training on trauma-informed treatment. But frankly, as a penalty for the extraordinary and sadistic abuses they long inflicted (knowingly with impunity) upon the mentally ill taken into their care, they deserve nothing less than to summarily lose their jobs and their licenses to practice — for good.

Listen Up Collage -- A message more than art. — Listen Up Collage — A message more than art.

Art, Health, Seclusion and Restraints

Trio of Psychiatric Abuse Collages: encounter, restraint and seclusion

Gallery August 17, 2014 Phoebe Sparrow Wagner 6 Comments

Encounter in Seclusion Room - collage of torn paper — Encounter in Seclusion Room – collage of torn paper

Nude Schizophrenic IN restraints While Bored nurse Looks On

you get the idea….no violence, just a scornful set of nurses and aides and a security guard willing to do anything he was asked…and chaos broke loose with terrible consequences.

Art, Seclusion and Restraints

Nude Schizophrenic in Restraints While Bored Nurse Looks On

August 2, 2014 Phoebe Sparrow Wagner 3 Comments

Actually I “deserved” four-point restraints. I was “violent.”

But I want to explain what “deserving” restraints and being “violent” at New Britain General Hospital (Hospital of Central Connecticut) means in 2014.

I also want to tell you something else even more important: In Connecticut, the staff at almost every psychiatric unit or hospital will insist that “we only use seclusion and restraints when essential, when a patient is absolutely out of control and extremely violent, and cannot be controlled in any other way.”

Trust me, I know, because they have said this to me.

But what you need to know is that they are NOT talking about some 300 pound man hopped up on PCP, waving a machete. For one thing, that person, whom I believe to be largely mythical at least in ordinary psych units, or if real now largely confined to correctional and law enforcement settings, the person they are talking about, the rule, not the exception to the rule of the “extremely violent” person whom they claim must be restrained due to lack of any other method of control, is, to put it grammatically correctly, I.

And let me tell you about me. I will turn 62 years of age in November. I am 5 feet 3 inches tall, weigh, maybe 110 pounds on a good day, and have been consistently described as “poorly muscled.” I am also unable to use my left arm for much of anything, due to injuries sustained at the Institute of Living in 2013, including a small tear in my rotator cuff and possibly more than that– a fact the HOCC nurses/security guards knew and used to their advantage when subduing me. I also want you to know that I am a decades-long vegetarian on the principle of non-violence — to people as well as to animals. I have opposed the death penalty since I was a nine year old child (when I first learned of it) and do not even believe in the principle of prisons, or in treating our convicted “criminals” the way we do now.

Yet in every single hospital I have been in since 2000, and of course for years before then (“before they knew better”) I have been brutally secluded and restrained multiple times as “OOC” — out of control — and “violent.” In addition to either physically holding me down by brute force, one person to each limb and one to my torso (this was at the only 2 hospitals that did not actually resort to mechanical four-point restraints– compared to the dozen others that did), they would routinely inject me with one to three drugs as chemical restraints.

I am the rule, not the exception to it, of their supposedly “extremely violent mental patient” who is so OOC — out of control — that Connecticut hospitals refuse to eliminate the use of restraints and seclusion, because they “might need them.” I am the typical example of the person they claim they absolutely must have the right to resort to violence against, for their own safety and mine.

Okay, so am I truly violent? What did I do to deserve their brutality? Or should we say, their “protective measures?” Well, at HOCC, in the Emergency Department, this is what happened, and I kid you not: I came in by ambulance, involuntarily, in the sense that I did not want to go but was brought in by EMTs and given the “either the easy way or the hard way” choice by police. But I did not resist it or fight. I was not restrained in the ambulance. in fact, I was mute and merely handed them my med sheet and my detailed Advanced Directive, on the first 2 pages of which is the important information about my trauma history and the critical need to know points about how to deal with me.

When I arrived I was quickly shunted to the psychiatric crisis section and into a curtained off cubicle. No one took my cell phone from me, or the single book of my artwork that I had managed to bring with me. So I texted everyone I could for as long as I could. For a while I tried to obtain a crayon to communicate with, eventually and in desperation, writing with ketchup on the outer carton of my dinner container, begging for something to write with. Instead of helping me out, the head ER nurse penned me a note saying that I would not get anything to write with, that either I spoke out loud or she would not listen to me. How very odd and evil that she wrote this to me! She didn’t speak to me, she wrote it, as if I were deaf, even while saying that she knew I could speak and would not talk with me unless I did so… The idiocy of that act just sends sparks of rage through my brain even now. She later spied my art book next to me on the gurney, and suddenly rushed me, snatched it out from under my thigh and raced away with it, holding it triumphantly as if she had won a prize. I was incensed. Why hadn’t she just asked me for it? And how did I know what she was going to do with it? Would she keep it safe and sound? Actually, though, I mostly just reacted instinctively: Someone had stolen the only thing I had of my own in my possession, and she had simply snatched it away from me, without a word or even a polite request. So I did as anyone would do, I think. I raced up behind her and snatched it back! Well, that was a mistake. That was bad, that was bad bad bad. I heard people groan and swear. I was grabbed from behind by two security guards and the book was wrenched from me again.

Remember, I was mute so I couldn’t say anything, but I tried to resist, tried to gesture that the book was mine and she had no right too take it from me. Instead of explaining that she would protect it and take care of my things, people started talking about how I had attacked the nurse, had assaulted her…She told them to put me in seclusion. The guards dragged me, resisting in panic, towards this hidden room, and I heard another nurse warn them of my medical history with a torn left rotator cuff. Hearing this, the guard on my left side, grabbed my shoulder and wrenched it higher until I let out a blood curdling scream, wordless but vocal. “Aha! I thought you could make sounds!” he said in triumph, wrenching me again until I sobbed in agony. Then they dumped me in the seclusion room, with only a hospital johnnie on me, and locked the door behind them.

Even though I had no words to speak my rage and panic, I screamed and screamed. They came through the door with needles, held me down and injected me. Then, when in a rage reaction, I disrobed, they decided to four-point restrain me. I heard a guard say, “we really have no reason to restrain her, you know.” But the other said, “It doesn’t matter, we will find a reason.” So they did . Terrified, I did not resist, because they held me down by the left shoulder causing me so much pain I was afraid they would hurt me permanently. I also hoped upon hope that if I didn’t resist, they would let me out quickly. Believe me, I had been through this routine enough to know what to try to do to minimize the consequences and the damage…

Fast forward to my being sent to the psych unit, about which I no longer had any choice, being labelled violent now and OOC as well as mute and schizophrenic (I hate that word but they used it). When the doctor who admitted me, Dr. Michael Balkunas, came to see me the next day, I was still mute. He asked me how I was and I gestured my need for a writing implement to answer his questions. He coldly told me that he would not speak with me if I would not talk out loud. Then he got up and walked out the door, with nothing more to say. I was by then so upset and outraged that I got up off the bed, which was the only furniture in the room, and slammed the door after him. I meant only to make a noise to express my frustration, but unfortunately it caught him in the shoulder. This was not intentional, not that I recall, though I confess I was so enraged by his dismissal of me, especially after the violence inflicted on me not once but twice the night before in the ER on his orders, that it is possible I wanted the door to make contact with him. What I know is that I most certainly did not intend to injure him. I only wanted him to know, before he walked away from me, that I was angry and “speaking” to him the only way I could. Dr. Balkunas’s reaction was itself swift and violent in the extreme, and extremely personal. Enraged, his face beet-red, he bellowed at the nurses to order guards to force me into “Seclusion! Seclusion! Restraints! Restraints!”

Before I could do anything or even assent to walk there, I was bodily dragged down the hall by my injured shoulder, to one of the most horrifying seclusion suites I have ever seen. A set of two cells, each lockable from the outside, completely barren and cold except for a concrete bed set into the concrete wall, with a plastic mattress on it. Nothing else. No commode, no bed pan, nothing but two obvious cameras in the ceiling, but no obvious way for me to communicate with anyone. They locked me in, locked the second door a room away, so I was thoroughly alone and soundproofed from the rest of the unit, and walked away. I panicked immediately, and urinated on the floor in my panic. I took off my clothes. I screamed — wanting someone to talk to me, I wanted warm dry clothing to wear, but there was no response. I screamed and screamed. Nothing. Not a word. I did not even understand at that time that there was an intercom they could hear me through. I thought I was completely alone and abandoned, but for the eye of the camera. So I did what I had to. I KNEW what would happen, I knew this because it was SOP. But I was freezing in there, with the A/C on full bore and at 110 pounds and a history of frost bite I cannot tolerate being cold. I also had NO inkling as to how long they would keep me there, one hour or sixteen. All I knew was that I could not tolerate the isolation, one, and I would not survive the freezing temperature, two.

So I took the urine-wet johnnie I had taken off and I rolled it into a rope and tied it around my neck. I pulled on it as if to strangle myself. It was useless of course, because I couldn’t keep pulling it without letting go and then I would breathe. And I didn’t want to die, I just wanted it to LOOK as if I were strangling myself so someone would come in and I could explain that I was COLD! Well, finally the intercom crackled to life and someone said, “Pamela, take that away from your neck now.” I gestured something that clearly indicated, “I’m freezing cold!” The voice spoke again, “If you don’t remove that from your neck, we will restrain you.” I answered silently but in clear gestures, “I need something warm to wear!” Well, this was a battle I was destined to lose, of course. And eventually but not so quickly as to indicate that they were seriously concerned about my safety, guards and nurses entered the room, along with a gurney, and they did as they had threatened, injuring me in the process. They grabbed me and hoisted me onto the gurney and locked me into leather restraint cuffs, in a painful and illegal spread-eagle position, despite my groans of pain and protest, then they refused even to cover me with a blanket. Someone threw a small towel over my lower torso and that was all. They they positioned an aide at the door and trooped out. I screamed my lungs out, and gestured my desperate need for water and warmth, but the aide simply ignored me, saying she wasn’t permitted to talk to me, and couldn’t get me what I needed. That was how violent I was. And that is how the most violent patients are treated and why they MUST be restrained, for their own safety and the safety of others…Right? NOT! ALL the other times I was secluded it was because i was disturbing the peace of the unit. I was loud and complaining, or simply “agitated” because i walked the halls too much.

That was it. That is the rule not the exception, and if you read my posts about my incarceration at the Hartford Hospital Institute of Living in the winter of 2013 you will get a similar picture. I am not the 300 pound crazed man on PCP wielding a weapon, no, I am a small, elderly woman who is non-compliant with the unit milieu and wants only to be warm…that is about it. But each and every hospital claimed that I had to be restrained, that they had NO alternative, that I was so violent that they had no choice, even though it often took only one or two people to do so, because I didn’t resist or say a word, just lay there while they pinioned me to the bed. Now you tell me that restraints and seclusion are necessary ‘modalities of treatment” that cannot be done away with because they might be needed in an emergency. Emergency schmergency. I am that emergency and they were and are NEVER needed, EVER.

Art, Seclusion and Restraints

Terrified Patient in Restraints

Image July 10, 2014 Phoebe Sparrow Wagner 4 Comments

Health, Seclusion and Restraints

Seclusion Room: Cell or Sanctuary — Amazing Article from 1959

June 26, 2014 Phoebe Sparrow Wagner 2 Comments

This supermax prison cell is better appointed than the seclusion rooms I have been put in...NO toilet or sink or blanket or bedding! — This supermax PRISON cell is better appointed than the HOSPITAL seclusion rooms I have been put into naked…which had NO toilet or sink or blanket or bedding, and was freezing cold!

THE SECLUSION ROOM – CELL OR SANCTUARY?

By HUMPHRY OSMOND, M.D., 1959

Superintendent The Saskatchewan Hospital, Weyburn

SECLUSION ROOMS, found in most psychiatric hospitals, too often look as if they were intended as temporary quarters for wild animals, or perhaps as storerooms for dangerous chemicals, rather than as shelters for sick and distressed humans.

Yet, the purpose of seclusion is clear and admirable. It is intended to reduce interaction following a rupture in interpersonal relationships between the patient who is being secluded and other patients, or members of the hospital staff.

Seclusion usually occurs when there has been acting out or a threat of it. While skilled psychiatric nurses can often handle such situations without using seclusion, it is proper that a patient, in an explosive situation, should have an opportunity to withdraw to a suitable spot to be alone for a time or in the company of someone he trusts.

When children quarrel with siblings or parents, they are often sent or asked to go to their room and be alone with toys and playthings. Adults retire to a bedroom, a study or even to the toilet. Although it was once common practice, it is no longer thought admirable to lock a child in a dark cupboard. In his own room, he gets comfort from his toys, just as an adult will soothe himself with a book, a pet animal, possibly with music, or just by being alone.

The mentally ill person, who has had a rupture of interpersonal relationships, likewise needs space under his own control where he can “pick up the bits.” The best place would be a room of his own, with familiar furnishings and his personal possessions easily visible. Wherever his retreat, it should give external stimulation as well as support and comfort.

Bare, Drab Rooms Affect Perception

Seclusion rooms in many hospitals are built to some stereotyped plan, and are poorly-lit, bare, drab rooms of a curious cube-like construction which makes them seem unduly high. There is little or no furniture, often only a mattress. Walls are usually tiled in one color only, and this sometimes white. Windows covered with heavy screening, ceiling lighting often high and remote beyond the patient’s control, heavy imprisoning doors sometimes the same color as the walls, and in the middle of the floor a brass grating over a drain hole―no wonder these rooms are suggestive and frightening. Such rooms strongly resemble the reduced environment described by Hebb* in which even well people can experience major 18 changes in thinking,. perception and mood, larked in certain non-experimental situations, notably brain washing, such environments are deliberately used. to. encourage alterations in perception. Surely then it is un-wise to place psychotic people in a situation which, since it will not afford them even minimal external stimulation, is likely to increase the perceptual disorder which many of them already have.

The need for sufficient stimulation, particularly of a visuo-auditory type, combined with carefully selected tactile and olfactory stimulation, is strongly suggested by Goldfarb’s recent work at the Ittleson Family Center with children. His work indicates that many schizophrenic children tend to inhabit a tactile-olfactory world, rather than the more common and culturally acceptable visuo-auditory one. It seems probable that schizophrenic adults may be in much the same position.

Clearly then we must provide our disturbed patient with an adequate amount of pleasurable visuo-auditory experience while in seclusion, and also let his environment be rich in socially acceptable tactile-olfactory pleasures, lest he seek the only remaining gratification―tactile-olfactory ones from his own body. Specifically, let us imagine a patient, greatly disturbed, shut up in a bare room, with bare walls, little or no clothing, and possibly only a mattress or blanket as furnishings. The visuo-auditory and tactile-olfactory enjoyments to be obtained from such surroundings are very small. Is it surprising, therefore, if his seclusion results in apsophilic (auto-erotic) activity, in the tactile experience of staff members or even in reviving a tactile and olfactory interest in his own body products of urine and feces?

These apsophilic activities, the touching and snuffling on the nursing staff, and the handling of feces and urine are likely to produce great anxiety and great resentment in those who must care for the patient. He will naturally interpret this as dislike and rejection, and a vicious circle is established. He is driven deeper and deeper into his tactile-olfactory experiences, and probably also into full hallucinatory experience. Since we are woefully short of really sophisticated staff, we must make .very vigorous efforts to see that this type of “reduced environment” seclusion is banished from the mental hospital as quickly as possible.

The seclusion room, therefore, must be not merely pleasant, but the very best room on any ward. There are several reasons for this. For one thing, if the room is pleasant, it will take away the idea of punishment―not merely by a verbal gesture, but by a change in the attitude of everyone on the ward, patients and nurses, who will both be far more impressed by the fact that the seclusion room is the best on the ward than if there is simply lip service to the effect that seclusion is not punishment. Money invested in making this room conspicuously better than other rooms “because it is for those who are the most unwell” will indicate to both nurses and patients that the hospital particularly concerns itself with those who are the sickest. The fact that the room is an object of pleasure and satisfaction to all the patients on the ward will exert considerable pressure on the disturbed patient to use this joint possession properly. This pressure will be extremely effective in preserving the room from damage.

Dimensions and Decor Important

What, then, should this “best room in the ward” be like? Particular attention must be given to its size and proportions. A small room of great height is extremely oppressive to most people. and if such a room must be used, perhaps a false ceiling should be built in. The lighting must be good, and must, at least in part, be under the patient’s own control. The walls should be pleasantly painted in bright and reassuring colors. There should be pictures on the wall, and a mirror (a metal or unbreakable mirror is permissible). The bed should be comfortable and the bed cover pleasant. Sheets, pillows and mattress must of course be provided. There should be chairs and a desk, the chairs self-colored and if possible, textured. Patterned material is best avoided, since it may have a disturbing, Rorschach-like effect. (Until we know more about the effect of patterns on patients’ perceptions, we should be cautious about patterned materials.) A carpet or rug, preferably nylon, should be on the floor, which may be of tile or linoleum, but should be light in color. To avoid uncertainty about the passage of time, a clock and a calendar should be clearly displayed. If a toilet cannot be readily available, a modern commode chair may substitute, if it is explained to the patient.

It is important here, as elsewhere in the hospital, for the furniture to be light, strong and elegant, rather than heavy or cumbersome. Heavy furniture quickly becomes a challenge to some patients to see if it can be broken. It encourages all patients to lose one of the most important skills which we all acquire in childhood―the ability to maneuver through complicated mazes of furniture. This ability includes all sorts of skills, especially subliminal psychomotor movement. Mental patients frequently lose this ability through disuse, and all too often the arrangements in the mental hospital give them no opportunity to re-acquire it, or what is even more important, to correct early the tendency to lose it. Experimental work shows that, given the opportunity, people frequently correct perceptual errors on their own. But a bare room, fitted with one massive piece of furniture affords neither encouragement nor motive for correcting an error of any sort.

In the seclusion room, the patient should have diversions from the very start. Games, books, perhaps a slide projector, a television or record player under his control are all possibilities. Cut flowers and potted plants should decorate the room. Writing materials should of course be available, and if the patient has difficulty in writing, as some psychotic people do, he might be provided with chinagraph (grease) pencils and an ample supply of paper. Part of the wall might be processed for drawing. which people sometimes find pleasant when they are upset. Plasticine and paint should be provided. A way might also be devised for the patient to brew his own coffee or tea. A tape recorder could be provided to allow the patient to hear his own voice, and get accustomed to the fact that he really is there, though this should be handled with caution, because some people find it rather a disturbing experience.

All these measures must, of course, be combined with friendly interaction with a member of the hospital staff, one with whom the patient feels comfortable and can speak freely, but who, like the room itself, will keep him as close to reality as possible.

In brief, the seclusion room is ideally a place where the patient, after a rupture in interpersonal relation-ships, can re-assert his adultness and recover his poise, rather than a place of punishment where he is treated like an abandoned child in a dark cupboard or a bear in a pit.

(See link to original article for photo of music therapy session.)

*Dr. Donald Hebb, McGill University, conducted experiments in which the subject was placed on a bed in an air-conditioned box with arms and hands restrained with cardboard sleeves and eyes covered completely with translucent ski goggles. Hallucinations and delusions of various sorts developed, mostly in those who could stay longer than two days. Many subjects left at about twenty-four hours

http://journals.psychiatryonline.org/data/Journals/PSS/20510/18.pdf

Health, Seclusion and Restraints

Article From New Haven Register On Connecticut’s Excessive Use of Restraints, With Full Commentary…

June 8, 2014 Phoebe Sparrow Wagner Leave a comment

http://www.nhregister.com/general-news/20140601/connecticut-hospitals-restrain-psychiatric-patients-at-double-national-average#comment-1424593756

FROM: THE NEW HAVEN REGISTER May 31, 2014

Connecticut hospitals restrain psychiatric patients at double national average

By Lisa Chedekel, Conn. Health I-Team Writer

POSTED: 05/31/14, 11:10 PM EDT | UPDATED: 1 WEEK AGO

2 COMMENTS

As Connecticut works to improve its mental health system, new federal data shows that hospitals in the state restrain psychiatric patients at more than double the average national rate, with elderly patients facing restraint at a rate seven times the national average.

In addition, the state lags behind in providing adequate post-discharge continuing care plans for psychiatric patients, especially teens and the elderly. Connecticut’s 28 inpatient psychiatric units and hospitals developed continuing-care plans for fewer than 70 percent of patients they discharged from October 2012 to March 2013 — indicating that thousands of patients may have left facilities without adequate treatment and medication plans.

A C-HIT analysis of the federal data, released by the Centers for Medicare & Medicaid Services for the first time, shows that Connecticut ranks in the top fourth of states (11th highest) in the use of physical restraints in inpatient psychiatric facilities — and is the third highest state in restraining patients 65 and older.

Two psychiatric units — at Bridgeport Hospital and Masonicare Health Center in Wallingford — have the 10th and 12th highest rates of restraint use, respectively, among the 1,753 psychiatric facilities nationwide that are included in the federal reports, which cover October 2012 through March 2013.

State and federal guidelines — tightened over the past 15 years, partly in reaction to deaths in Connecticut facilities — say that restraints should be used only in cases of imminent physical danger to a patient or others. They call for less restrictive interventions when patients are acting out aggressively.

But the data show that Bridgeport Hospital, Masonicare and three other Connecticut hospitals — Waterbury, Hartford, Danbury — restrain patients at more than triple the national rate.

James McGaughey, director of the state Office of Protection and Advocacy for Persons with Disabilities, said he was disturbed by both the high rate of restraint use and the low rate of post-discharge plans.

“The numbers are pretty compelling,” he said. “Some of our hospitals have done a significant amount of work on this, but clearly there’s more to be done.”

He suggested that the Department of Public Health, which oversees hospitals and is charged with reviewing annual reports of restraint and seclusion, should “get a little less timid in looking at this.” Hospitals rarely have been cited or penalized in recent years for improperly using restraints, a review of inspection reports shows.

McGaughey noted that the state-run Connecticut Valley Hospital in Middletown has pursued a reduction in restraints and seclusion that has cut its restraint rate significantly in the last five years. The new data show CVH’s rate at .52 hours per 1,000 patient hours — below the statewide rate of 1 hour per 1,000. The national average is .39.

“It’s ironic that our one remaining large state hospital has done such a good job of reducing restraint and seclusion, but you have some very different results at private institutions,” McGaughey said of CVH, which was cited for excessive restraint use in 2007 by the U.S. Justice Department. “What it shows is that it’s possible to address this issue, but you need leadership to effect this kind of culture change.”

Mental health advocates say seclusion and restraint should be avoided because they are traumatic and dangerous to patients and staff.

Alternatives include individualized aggression-management plans, the use of “comfort rooms” or time-out spaces, and one-on-one interventions. Among the innovations at CVH are 22 “comfort rooms,” designed to calm agitated patients, and a reduction in the time interval that a physician’s order of restraint or seclusion can remain in effect, according to a state report.

Yale-New Haven Hospital has a restraint rate of .36 hours per 1,000 patient hours — just below the national average of .39 hours. But its rate of developing care plans for discharged patients is relatively low — 50.36 percent, compared to a national average of 73.5 percent of cases.

Officials at Connecticut hospitals with high rates of restraint say they are working to reduce those incidents, and they stressed that even minimal mobility restrictions, such as soft wrist restraints or brief therapeutic holds, are counted in the federal numbers.

Robert Bernstein, executive director of the Bazelon Center for Mental Health Law, a national advocacy group that successfully sued Connecticut in 2006 to stop housing psychiatric patients in three nursing homes, said he worried that progress made in the early 2000s to reduce restraints might be slipping in some hospitals because of staff shortages and “pushback” from clinicians.

“Some of the procedures put in place may have been weakened, because it’s a lot of work” to use alternative interventions, he said.

Although patients subjected to improper restraint can file complaints, few speak out, Bernstein and others said. Among the exceptions in Connecticut is Pamela Spiro Wagner, a Wethersfield writer and artist with schizophrenia who has cycled in and out hospitals.

In an April “open letter” to the director of a Connecticut psychiatric hospital, Wagner readily conceded that she is a difficult patient — “easily roused to irritability and hostility” — but insisted that her behavior has not warranted her repeatedly being placed in restraints and seclusion, for hours at a time.

“Once you allow staff to use restraints a little, it only takes a little to use them a lot.”

CONNECTICUT VS. THE NATION

Nationally, the states with the highest restraint use are Minnesota, Washington, South Dakota, Tennessee and New Hampshire. For patients 65 and older, only Nevada and New Hampshire have rates higher than Connecticut, which restrains elderly patients at an average of 7.69 hours per 1,000 hours. Thirty-five states have rates of less than 1 per 1,000 hours; the national average is 1.01 hours per 1,000 hours.

The U.S. facility with the highest restraint rate is Park Ridge Health in North Carolina, which reports 722 hours of restraint use per 1,000 patient hours overall. Among facilities that report serving children ages 2 to 12, Lakeland Regional Medical Center in Florida has the highest restraint use, at 200 hours.

The federal data shows Connecticut psychiatric facilities fare well in some categories, including lower-than-average rates of restraint for children and teenagers. Five hospitals reported no use of restraints for any age group: Sharon, MidState Medical Center, Bristol, John Dempsey and Natchaug hospitals.

And Connecticut’s rate of keeping patients in seclusion is lower than the national average, with half of the state’s psychiatric facilities reporting that they did not use seclusion at all. Nationally, South Dakota, Montana and Washington report the highest use of seclusion, defined as involuntary confinement where a patient is prevented from leaving.

But the state’s over-65 restraint rate is fueled by excessive rates at Masonicare (35.99 hours), Bridgeport Hospital (37.92) and Hartford’s Institute of Living (9.19).

Officials at those hospitals say they have taken steps in the year since the data-reporting period ended to reduce restraint use.

This is the first time that quality measures from psychiatric facilities have been made available by CMS. The federal agency does not penalize facilities for high rates of restraint or inadequate discharge plans. Instead, an agency spokeswoman said, the public reporting is intended to encourage quality improvements and help consumers to make informed decisions.

At Bridgeport Hospital, Dr. Ryan O’Connell, vice president for performance and risk management, said the hospital’s geriatric psychiatric unit serves many patients with dementia and behavioral problems that cannot be managed in other facilities. About 18 months ago, he said, the hospital put in place an “action plan” to reduce restraints, including using “comfort” rooms. Also, in January, a new policy was implemented requiring that the nurse manager be called before any patient is restrained.

“We realized we were going in the wrong direction with restraints” and have since seen a “dramatic drop” in their usage, O’Connell said.

Hartford Hospital’s Institute of Living (IOL), which has a geriatric unit for complex dementia patients, has made similar changes over the past few years, nursing director Ellen Blair said. She said restraints are now rarely used, and only for patient safety. The IOL requires that a physician’s restraint order be reviewed every two hours, rather than every four, which is the standard of care.

“We look at our data every single day” to ensure that restraint and seclusion are being used only as “a last resort,” Blair said.

Masonicare’s acute psychiatric unit serves geriatric patients who frequently are referred because of difficult behaviors and aggression, said spokeswoman Margaret Steeves. When restraints are needed, the hospital uses “the least restrictive restraint, which is typically a seat belt,” she said. Masonicare has an interdisciplinary team reviewing restraint use.

Statewide, the Connecticut Hospital Association has been working with the state Department of Public Health to minimize the use of restraints, said Dr. Mary Cooper, the group’s vice president and chief quality officer. She said the new federal data “indicate that there is more work to be done in this area” and will help to identify best practices.

Nationally, the federal government tightened rules on the use of restraints and seclusion between 2001 and 2007, including time limits on physician orders and strict documentation requirements. The changes were prompted by a series in The Hartford Courant, “Deadly Restraint,” which documented restraint-related deaths in psychiatric facilities nationwide.

In 2007, the U.S. Department of Justice cited the state-run CVH for excessive overuse of unnecessary restraint and seclusion. Since then, policy and training initiatives have significantly reduced restraint episodes — from 26,290 hours in 2000, to 529 hours in 2012 — a state report shows.

State DPH spokesman Bill Gerrish said the agency collects restraint and seclusion reports from hospitals and works to “ensure that care is appropriate.”

LAGS IN DISCHARGE PLANNING

McGaughey and Bernstein said they were especially troubled by the failure of many hospitals to develop continuing care plans for discharged patients, and to transmit those plans to the next level of care.

Statewide, Connecticut facilities developed adequate discharge plans 69.4 percent of the time — lower than the national average of 73.5 percent. For teens, hospitals transmitted care plans only 55 percent of the time — lower than the national average of 74 percent — and for seniors, just 42.7 percent of the time, below the national average of 56 percent.

Discharged patients are supposed to receive care plans containing their diagnoses, reasons for hospitalization, medications and treatment recommendations.

The federal data shows that 10 Connecticut hospitals, including Waterbury Hospital, Masonicare and Yale-New Haven Hospital, properly transmitted care plans to the next provider in less than half of cases.

A few hospitals — St. Mary’s, Bristol, Norwalk, Natchaug Hospital and Southwest Connecticut Mental Health — transmitted care plans more than 90 percent of the time.

McGaughey said that without continuing care plans directing further treatment, many discharged patients may languish in nursing homes, shelters or land back in the hospital.

“The lack of continuity of care, to me, is a huge issue,” he said. “It’s a pretty brutal business — insurance companies want you to medicate and discharge as fast as possible. The question is, what happens after they’re out?”

Bernstein said the lack of attention to continuing care plans was “jaw-dropping.”

“Those numbers should be at 100 percent,” Bernstein said. “It’s shameful.”

Hospitals with low rates of discharge care plans blamed much of that lag on their failure to document that the paperwork was done.

At Masonicare, for example, Steeves said the 31.3 percent rate of developing care plans was due to problems with the “tracking of the discharge document . . . not that it wasn’t actually sent.”

This story was reported under a partnership with the Connecticut Health I-Team (www.c-hit.org).

COMMENT:

This is the comment that I posted online at the paper a few days after the article was published, (as it happened, while I was a patient being tortured at the former New Britain General Hospital, the present day, Hospital Of Central Connecticut).

Pamela Spiro Wagner: “As someone who has been subjected to more use of seclusion and four-point restraints over the past “decade of change” than in the two decades previous it boggles my mind that anyone would even dare to state that things are improving in CT mental health care institutions. During my nearly month-long captivity in the winter of 2013, the Institute of Living in Hartford regularly restrained me to a bed for as long as 19 hours at a time, without ever releasing me for so much as a bathroom break — I had to defecate in my clothing. I was not even released to eat. When I was not in four point restraints “for not following directions, I was in seclusion, which they called the “Quiet Room” and not seclusion, but by CMS definitions, it was seclusion as I was separated from the rest of the patient population by force, and was not permitted to leave the room I was isolated in.

The one time I did actually saunter away, walk down the hall to look out the window, and return to my non-seclusion Quiet Room, I was punished with immediate use of four point restraints, into which I was placed without a struggle, hoping that would make it easier to win my freedom. Alas, for me, there was no way to earn freedom from restraints I never “deserved.” The entire point was discipline, and that would last as long as the staff wanted me to be in shackles to learn my lesson. There was literally nothing I could do, –stay calm, sleep, quietly ask for release — nothing, until they were finally satisfied that I was submissive enough to obey their orders, some 6-19 hours later. But I had to cry Uncle, and submit to a set of degrading humiliating “debriefing questions” that assured them that I took responsibility for my own being restrained and that my behavior would henceforth conform to their norms.

I was surprised to see Natchaug Hospital being given good ratings of any sort. One of their chief psychiatrists on the Adult Unit, a longtime presence their Emeritus psychiatrist you might say, was so insouciant about this job as to be nearly incompetent, but probably hard to fire even for negligence. HIs name I will not mention. He routinely did drive-by visits with his patients– a wave in the hallway might not be a completely standard morning meeting, but it happened often enough that peatients knew that would be all of this doctor they would see for the day. He routinely discharged patients with GAF scores at or around 60, the highest “global assessment of functioning” that one can have and still be rated “disabled” — not because he knew this level of functioning to be the case, but because it made him and his psychiatric ministrations at Natchaug look good. After all, if person comes in with a GAF in the 20s, and barely able to function, and you discharge him or her a week or two and some drive-by counseling sessions later with a GAF of 60, you must be doing a terrific job, esp for a 75 year old doctor not too keen on using anything like trauma-informed or patient-centered care. I had never left a hospital before Natchaug with a GAF higher than 40, but suddenly I rated a 60….by a doctor with whom I never spoke.

Natchaug Hospital, when the nursing director was Sharon B Hinton, APRN, was a decent place, because she made certain that abuses like restraints and seclusion rarely to almost never happened under her watch. I know, because I was there about three times during her administration. I also knew her when she was Hartford Hospital’s psychiatric Head Nurse at CB-3, where she and her never failing humanity and respect for the dignity of every patient made all the difference in the world. I might have come from an abusive hospital in the early 90s, like University of Connecticut’s Dempsey Hospital, which in those days four-pointed people to an iron bedstead, by shackling them spreadeagled to the four corners of the bed, a stress position that is not just tantamount to but is in fact torture. But I would be rescued by someone finding me a bed at Hartford Hospital, where Sharon would discover me arriving there in tears and tell me, unfailingly,”Its not you, Pam, you did nothing wrong, It is the hospital that treats you badly…We don’t have any problem with you, because we treat you well and you respond to it. When they treat you with cruelty, you respond badly…That’s very normal.”

But as to Natchaug…Bravo if they have done away with restraints completely. They had not done so when I was there last in 2012. Nor with seclusion, which was imposed in mostly a disciplinary and arbitrary fashion. Largely it was used to force medication on loud obstreperous patients or for angry fed-up senior nurses to take out their peeves on patients they didn’t particularly like (e.g. me). I still remember one APRN demanding that I be dragged to locked seclusion, and left there alone (despite all Sharon’s previous assurances that such would NEVER happen, that someone would ALWAYS remain in that room with me if I ever ended up there.. Alas, Sharon had left by then, so rogue nurses like D could have their way…) and when I peed on the floor in panic, and took off my clothes they rushed in to take them away from me, and inject me with punishment drugs, then made me stay for an hour alone on the pee-soaked mats, freezing cold, pretending to sleep and calm myself just to convince them I could leave and not bother anyone. I managed to do so, or at least the APRN D. got over her fit of pique and finally released me, but I was not really calm, and when they finally draped two johnnies over my naked body so I could decently traverse the distance to my room, I left, disrobing as I went…Who gave a damn about my flabby flat behind? I certainly did not. And it served them right if everyone got an eyeful…served them right..

Natchaug’s biggest problem was and probably still is a lack of staff cohesiveness and bad morale between the staff nurses and the well-educated techs/mental health workers who were all very dedicated college grads but were treated like grunts…The MHW’s did most of the important patient contact, but were not trusted to write patient notes, or the notes they wrote were never read, or accorded any import. This was not just despicable but very unfortunate in more than one instance during my stay, as the notes they took personally might have saved me from some terrible misunderstandings and outrageous misdiagnoses that harmed me terribly..

Most places use techs who are trained by shadowing for a day or two, which means, badly trained, if at all…

You have to take all such in-hospital diagnoses with such a heavy grain of salt, you know, even when they are labeled with the words, “THIS IS A LEGAL DOCUMENT.” Because they get so much of fact-checkable, factual material garbled that you cannot believe a word it says. And as for diagnosis, well it is all of it opinion, one, and two, it depends largely upon whether you are a likable patient or a disliked one, what they finally say about you on any given day. No one should have that sort of power over another human being, frankly. And the idea that they can brand one for life with certain psychiatric diagnoses just sickens me.

Be that as it may, my recent last experience was beyond the beyond, at Hospital of Central Connecticut, The old New Britain General…and I expect to go back to talk to someone there about it. I always do And I have much to say to them, after the pain and rawness have worn off a little. They considered it SOP to strip me naked and leave me alone in a freezing seclusion cell without any access to human contact, unless they chose to speak to me over a loudspeaker hidden in the ceiling. If not, I was utterly abandoned, no contact or even view of another human being for as long as they wanted to keep me secluded. They also restrained me, having male security guards four-point me stark naked to the bed, before they had the decency to cover me with a light sheet, even though I begged for a blanket for warmth. (A nurse manager came in and shivered, saying “Brrr its cold in here!” but did they relent and let me have a blanket…No, clearly I was not human, didn’t need warmth.)

This is just the tip of the SR iceberg in CT in the current years, Remember this is happening right now, not ten years ago, or before the so-called reforms. Nothing is getting better. Things are worse than ever, And when you are a patient in these hospitals, you have no help, no recourse, anything and everything can be done to you and you have no way to refuse or say “no”. No one will help you, or offer assistance. They can just grab you and seclude you or restrain you without your having the power to stop them or any recourse to make them pause and reconsider. You are powerless to stop anything…And so they get away with it every time. And once it is done, who will fight for you? What lawyer will take your case if the guards hurt your shoulder rotator cuff, or bruise you up, or degrade or humiliate you? No one….so you are deprived of your human and civil rights, completely, but the hospital knows that no one cares enough to fight for you, so they get away with it each and every time, and they know this when they do it. They have nothing to worry about,….You are just another mental patient, a nobody, a nothing.

That’s what you are if you are diagnosed with schizophrenia and hospitalized in CT hospitals in 2014. A nobody that the hospitals can abuse with impunity and will. Just wait and see if any of this changes…I doubt it highly. They have no motivation to change. They don’t think they are doing anything wrong now.”

Art, Seclusion and Restraints

Impromptu Starbucks Sketch (Hey TexasTom, If you are brave enough, so can I be…!)

April 28, 2014 Phoebe Sparrow Wagner Leave a comment

15 minutes no longer, and much of it was scrambling to photograph this before I gave it to the person...I heard her friends laughing about "what was that on her back...OH its her hoodie!" but what did I care? I know I can draw, and i only had a few minutes, with all of them squirming around and changing positions...THEy have NO idea how hard it is to draw someone in action! — 15 minutes no longer, and much of it was scrambling to photograph this before I gave it to the person…I heard her friends laughing about “what is that on her back…OH its her hoodie!” but what did I care? I know I can draw, and i only had a few minutes, with all of them squirming around and changing positions…They have NO idea how hard it is to draw someone in action!

The next one is a work in progress, about four point restraints and abject terror, if I can accomplish what I want to do in my usual pencil painting… SO far so good, but we will see.

This will be a picture of four point restraints, or wrist restraints coupled with an expression of abject horror, and more...If I can accomplish it with my usual pencil painting. — This will be a picture of four point restraints, or wrist restraints coupled with an expression of abject horror, and more…If I can accomplish it with my usual pencil painting. Right now, alas, the hands looks a little more like marionette type hands than really shackled though the restraints are drawn exquisitely accurately.

Health, Institute Of Living, Seclusion and Restraints, Trauma

My Challenge to the IOL: Stop Using Restraints and Seclusion NOW

June 25, 2013 Phoebe Sparrow Wagner 1 Comment

Well, how did it go yesterday? All in all, I would say it was a very successful meeting. Certainly it went better than I expected, and better than the disastrous meeting a year ago at Middlesex Hospital with Dr Grillo et al. I fear I irritated Dr Mucha a bit at least at first. Why? Because I think he felt defensive and tried to tell me how much he did on my behalf and my mobile facial features (I don’t hide my feelings behind a good psychiatrist poker face) let him know at once that I didn’t believe him. Why should I? One, it was completely self-serving for him to tell me — as if he had been some sort of knight in shining armor behind the scenes — how much good he had done for me, when he let them restrain me day after day for many many hours at a time, and keep me in what he himself acknowledged was on-going seclusion for the majority of the hospital stay. How dare he tell me how much he did for me, and then when I said they “tortured me” actually scoff, “Restraints aren’t torture!”

Ask my brother, Phil, an extremely humane psychiatrist who would disagree, and would rather die than be restrained, but I went one better. I quoted Juan Mendez the Special Rapporteur to the Human Rights Council at the UN who just this past March spoke/wrote specifically about psychiatric patients and how the use of solitary confinement of any duration and any use of restraints, forced medication and forced ECT is torture. He didn’t say tantamount to torture he said that are torture, period. And I would remind Dr Mucha and Mrs. Blair that until you have experienced these things — and I defy you to try any of these modes of your so-called treatment– you have no way of knowing. All you have to do is look at the expression on the face of the woman in the picture I did yesterday.

From the way I was treated, under Dr Mucha’s supposedly magnanimous supervision, at the IOL (depicted in that drawing) anyone could tell that the people “caring for me” did not consider that I was truly human or “felt” their torture in the same way they would have. Because if they had believed that, they never would have done what they did to me, unless they really did deliberately, maliciously want to torture me. I don’t know which it is. Dr Mucha and Mrs Blair say the Donnelly 2 South unit staff are good people who wanted to help me….So which is it? That they didn’t consider me a real person, just a diagnosis and not really human, so they thought I didn’t feel the torture (this despite my exquisitely lucid PAD that spells everything out in detail) they inflicted, or they were actually malevolent and wanted me to suffer? I tremble to have to choose between the two!

Either way, the torture was inflicted and despite numerous calls to Carmen Diaz, the patient advocate, (another name for the Hospital employee who works FOR the hospital not the patient, really) no one, not a soul, came to help me. I called outside sources too, but except for my advocate at the dept of Protection and Advocacy, who is not a lawyer and has little power besides that of complaint, there is not an agency or organization in this entire state of CT that can or would help me. Not a legal aid group or a lawyer besides the court appointed one to fight commitment that would even come in and talk to me about what was happening. I was ALL ALONE, yet Dr Mucha’s knickers got in a twist because I didn’t praise and thank him for all his work behind the scenes on my behalf.

Well, I am sorry, but 1) Dr Mucha is the Director of the IOL and he is IN CHARGE. He did not need to work behind the scenes. He could have spoken to Dr Taylor about her treatment of me at ANY time. If he thought she was not treating me well or using restraints in an unnecessary or wrong-headed way, he ought to have spoken out at once, openly. Period. 2) I needed someone on my side OPENLY. I needed someone to come to me and tell me that they were going to stop this nonsense and get me some real help that no one was going to restrain me again. That they knew my advance directive was meaningful and that things had GONE TOO FAR.

None of that happened. None of that happened. And while plenty apparently did behind my back, I am not responsible for what I was not told and did not know. Though I do appreciate it now that I do know. For instance that Bev, the voodoo princess, who I was terrified of, not because of her voodoo, but because she was dangerous to me as a staff member, having taken an intense dislike to me, indeed such a hatred of me that she was conspiring to kill me…she was removed from D2S unbeknownst to me for as long as I was there. Simply because I had expressed such intense fear of her. That was something I did not know about, but I am very grateful they heard me and did something for me in that regard. Took my fear seriously rather than tortured me with her presence. On the other hand, if only, if ONLY they had told me that she would not be back for the duration, I would have slept better! Why not tell me? For nights I slept fearfully, since I had no way of knowing she would not be on the night shift!

I wish Dr Mucha et al would look into the Open Dialogue method of dealing with psychosis. It will never be implemented in full in this country, and certainly not in hospitals. It is not a hospital-based method in any event. In fact, it is anti hospital and empties hospitals rather quickly. But some parts of it would be eye-opening, such as always including the patient in treatment planning, how that helps bring clarity to even the most disturbed person. How it involves their being NO secrets, nothing hidden, not even disagreements between treaters as to how to proceed. How wonderful it would have been for me to have actually heard Dr Mucha in conference with Dr Amy Taylor et al discussing the use of restraints or seclusion…Do you really think anything would have continued to happen, or that things would have proceeded apace if I had been included in those case conferences about me? I highly doubt it! Oh, if only I had been….I could have told them so much, but of course they didn’t even think to include me when talking about me! How stupid of them, how completely stupid. But I wasn’t a person, just an animal, just a diagnosis.

Anyhow, at the end of our meeting, which did go well after we got off the torture topic, Dr Mucha asked me if there was anything I wanted to end on. I thought a minute and said, “Well, you know, I want to go back to the subject of restraints and seclusion. You continue to use them because you won’t stop using them. You say it is a slow process, that it takes time. But it isn’t a slow process. You cannot stop using them as long as you allow their use at all. All it takes to stop using restraints and seclusion is to STOP USING THEM. Period. Once you don’t have the notion that, Oh, well, we can always use restraints on that unruly patient, so it’s okay, we don’t have to plan in advance about how to deal with her or him if things get out of hand…once you can’t resort to restraints at all, then you must think imaginatively in advance about how to deal with patients and you will find a way. You always do. Necessity is the mother of invention.”

So that is my challenge to the Institute of Living. Stop dillydallying around and pretending that you are reducing the use of restraints and seclusion. Don’t tell me that you are only using them in the geriatric population to reduce falls, because that is not true and that is not really the sort of thing that I am talking about and you know it. You don’t use seclusion and restraint to reduce falls for “an hour” anyway…THree times a week is not a reduction. Once a year is a reduction! But I want you to NEVER use restraints or seclusion again. I want you to understand that to restrain a patient or to use a show of force is to torture someone. Get this one thing straight, to deliberately frighten a patient with a “show of force” is an act of terrorism and has no place in a hospital. (In a prison, maybe, though I would argue against treating any human being like that even in prisons…) And when you torture someone esp a patient who is already suffering and frightened, you make her or him worse, sicker and likely to be MORE violent and less predictable and traumatized, with the subsequent behavior that is known to result after trauma. NOTHING good comes from treating a patient with violence.

I don’t know if the IOL will listen to me, a nobody, a nothing worth less than the paper I am printed on. Not worth a red cent or a paper nickel. No lawyer gives a sh_ t about me, I am not worth their time or effort because I am not worth a stinking dollar. So why would the venerable IOL pay attention to anything I have to say? (I am not stupid for all that, but genius IQs are a dime a dozen, alas… and Mucha and Blair too are no slouches, even if they persist in the delusion that to treat patients with violence is acceptable, and not torture, really.)

LISTEN to ME, LISTEN TO ME! I know what I am talking about. if you don’t you will continue to cause more harm than good. If you do, you will break new ground and start a revolution that cannot but do good. That’s all I have to say.

Health, Institute Of Living, Mental Health, Seclusion and Restraints

Open Letter to the Director of the Institute of Living, Dr Theodore Mucha, and Ms Ellen Blair, Director of Nursing

June 22, 2013 Phoebe Sparrow Wagner 4 Comments

Dear Dr Mucha and Ms Blair,

Forgive me if I must read this instead of simply speaking extemporaneously, but while I may seem collected to you, inside I’m shaking. Indeed, every time I recall what I recall, or reread the nursing notes about what was done to me this past winter here at the IOL, I start crying. I need to stay in control in order to retain some credibility and so I have written this out in advance in order to make sure that happens.

Thank you for meeting with me today. Ever since I was discharged from the IOL in February, I have felt the need to come back here to speak to someone. Yet because of trauma-induced amnesia, it is only now that I have acquired my records and learned the details of what happened that I’m finally able to do so. But at the same time, I wonder why I bother, since it is not as if I expect you to do anything or say anything that will make a difference. You won’t. You can’t. No one ever does, not even when faced with the reality of the most egregious abuses.

Before I say anything further, I want you to know that I believe that I have been harmed by the treatment I received on Donnelly 2 South, and that what the staff did to me was not only unethical and cruel but that it crossed the line into illegality more than once. I was told to assure you that I do not intend to sue or cause trouble. I do not, not at the moment. However, if I don’t feel that I have been properly heard at this meeting I may in fact file a formal complaint with the Department of Justice. For now, I just want you to listen carefully and hear what I have to say. When I am through, if you are so inclined, perhaps we might discuss ways in which things might have gone differently and how they might change in the future, for others even if it is no longer possible for me.

Please understand that I know I was a difficult patient. I was loud and upset and hard for some staff to deal with. That is precisely why my Psychiatric Advance Directive was written out the way it was, and why I made my medical and psychiatric history online so available. When ill, I am frightened and paranoid, which makes me easily roused to irritability and hostility. I know this, from a distance as it were. But knowing this now does not mean i was in control of my behavior. I am by nature neither temperamental nor prone to temper eruptions or throwing things. In addition, I am extremely modest, hardly one to disrobe or urinate in public. My friends and family have at times variously labeled me “stoic” and “peacemaker,” which should tell you a lot. But that I did all these things on Donnelly 2 South both horrifies me and concerns me because these behaviors point to something going on distinct from psychosis: they point to abuse and trauma.

Let me make it very clear that I have behaved in such outrageous ways before, yes, but only in response to extreme circumstances – as when i was subjected over and over to restraints and seclusion in a horrific and sadistic fashion at Manchester and Middlesex hospitals in 2009 and 2010. It is too bad that when Amy Taylor took it upon herself to violate my HIPPAA privacy rights and investigate my previous admissions, without asking my permission (which I never would have granted) she failed to make the connection between their abuse, and my subsequent behaviors there…It turns out all she drew as a conclusion was that if those hospitals could use restraints and seclusion ad libitum, well then, so could she. It didn’t seem to matter to her that in 2009 and 2010 those measures not only didn’t work, they made things worse when Dr Taylor followed their examples, the same results ensued, just as my PAD predicted.

I was admitted to Donnelly 2 South, and I came in with the very detailed Psychiatric Advanced Directiveas as I said. I made it very clear that my online electronic medical record was available. It included documents such as my narcolepsy diagnostic consult and special documentation proving my need for a higher than usual dosage of Ritalin, written by my former sleep specialist who was also my psychiatrist from 2000-2009. Included as well was a letter she wrote to my present psychiatrist, Dr Angela Cappiello, explicitly stating her conviction that I do not have a personality disorder, borderline or otherwise, and never did.

According to Dr Sanjay Banerjee he read every page of documents that I brought with me. That is what he told me. Moreover, when he spoke with Dr Cappiello, he brushed off my concerns about anyone misperceiving me as having a personality disorder. My brother, Philip Spiro, MD, himself a psychiatrist brought the same matter to the fore again when in discussion with Laurie Denenberg, but her response was much the same: ““Personality disorders are not a part of the picture here. We intend to honor her PAD. We are glad that she has had the foresight to prepare such an document.“ If this was so, then how did it come to pass that Amy Taylor wrote on my discharge summary that I have a “long history of Borderline personality disorder” and herself diagnosed “Personality disorder NOS with borderline traits”? I was being treated for four weeks for an active psychotic disorder. She would have no way of knowing whether or not I had any personality disorder, given the axis I diagnosis and you know it. She did too.

Dr Mucha and Ms Blair, you were not there on the unit or in the quiet room with me, so were you even aware of what happened half the time? Did you know for example, that on Februrary 6, I walked away from the quiet room, strolled down the hall, looked out the window and slowly retraced my steps back to the quiet room. But when I arrived I I was confronted by a cohort of staff who proceeded to 4-point me, even though I was quiet and put up no resistance? Not wanting to give them any reason or justification, I passively lay down on the bed and placed my own limbs out for the restraint cuffs, saying, (I quote my journal entry made later that evening): “For shame. You ought to be ashamed of yourselves. I am not and never was a danger to myself or others.” Their response was “ You refuse to follow directions so we do not know what you will do. This is not punishment, Pamela, this is what your behavior brings on every time.”

Were you aware that they always restrained me, spread-eagled, so tightly I couldn‘’t move a muscle? That they never permitted bathroom breaks or even let my hands free to eat? That I would fall asleep rapidly after three injections –whether calm or not, it was a routine punishment needle in the buttocks: Haldol, Ativan and Benadryl ——and they would invent reasons to maintain me in restraints even after asleep for hours? Or when I woke, groggy and hardly dangerous to anyone, they would grill me with questions that I could not answer, and they would use my inability to respond as reason not to release me?

Later in the evening on Jan 6^th, for the second time that day, they restrained me, for throwing half a graham cracker at the wall. Then, as usual, they left me like that for six hours, even after I fell asleep. In point of fact, I could never earn my way to release from restraints by good behavior or quietly, calmly asking for release. Of course not, because I hadn’t done anything to earn my way into them in the first place. They always refused to release me, ALWAYS, until I literally cried, “Uncle” when they told me to.

As to those vaunted ““shows of force“” what did you expect? Presented with a cohort of threatening staff personnel I saw one thing: an impending assault. I know they anticipated my panic; it said as much in my chart. Isn’t that the point of a planned “show of Force” – to induce fear and panic? Why else do it? So why should it be any surprise, when I defended myself as they grabbed me? When they stuffed me into a body bag and were trying to tighten the straps, surely you can understand why anyone would bite the hand of an attacker whose digits came near. It was a matter of life and death!

But none of it should have happened. My PAD explained in exquisite detail exactly what to do and what I respond to better than fear tactics and force. in fact, It is beyond me, knowing that one of the admission diagnoses I came in with was PTSD, how you Dr Mucha, could possibly approve in advance, the emergency abrogation of my PAD and a “just in case they are needed” use of restraints and seclusion. Why not counsel the person asking for this advance “right to restrain” to do all in his power NOT to restrain me and to work with the PAD instead?

Here’s what SAMHSA the substance abuse and mental health services administration publication has to say on seclusion and trauma:

“Studies suggest that restraints and seclusion can be harmful and is often re-traumatizing for an individual who has suffered previous trauma…

“Moreover, some studies indicate that seclusion and restraint use leads to an increase in the behaviors that staff members are attempting to control or eliminate.

I have been traumatized, and not just by hospitals. I was date-raped three times in my twenties and experienced traumatic domestic abuse by a long-term roommate. The cover sheet on the PAD made very clear that due to these trauma issues, I could not tolerate being secluded or restrained without serious consequences: regression and serious worsening of symptoms. Unfortunately, as soon as the staff saw fit to use physical methods of coercion and control on me, read punishment, from the first time a staff member grabbed me, all bets were off as to how I would behave. I certainly ceased improving, and my symptoms went downhill. Did they really think they were being kind and compassionate? Violence begets violence….

I tried to get help even when on the unit, at least I tried when I was free to make calls or leave my seclusion, err, forced-voluntary time-out two-week-long stay in the quiet room last winter. I made I do not know how many, but many, calls to the patient advocate office, but the sole time anyone made contact was when Carmen Diaz came to hand me some paperwork – I believe I was actually in 4 point restraints at the time — papers I could not read about the forced medication hearing. I needed her advocacy, but she never responded to my panicked calls in any way that was helpful to me. I wanted her help, but she never came by to ask me what I needed. She was less than useful, the fact that I had to go through her, and her refusal to respond contributed to my ongoing panic and desperate feelings of aloneness and depression. No wonder Dr Banerjee tried to force me into ECT.

And where did the ECT discussion come from? My PAD states in no uncertain terms that I would refuse ECT under any and every circumstance. My brother would be my conservator if Banerjee had sought to go down that road, and he would never have made any decision to counter my wishes on that subject. If Banerjee really read my PAD, he would have known that, and you too. Because he implicated you, you know. He told me that “Dr Mucha and I have made the decision to force me to have ECT.” Oh, I know, the chart talks about having “discussed the possibility of ECT with me” but that is not how it went down. I recorded the conversation in my journal directly after it happened and Dr Banerjee presented it as a discussion that you and he had, and a decision that you and he had come to, not one that I was privy to. And he presented it as one that I had no choice in.

Nevertheless, let me ask you this: regarding ECT and my so-called depression, were you fully cognizant that Banerjee had stopped my 75mg of the antidepressant Zoloft during the first or second week I was there? “Do you really need that?” he had asked, “You don’t seem depressed to me.” Obedient, and in any event glad to get off any medication at any time, I shook my head, assenting to the change. I remembered having trouble getting down even to 50mg quickly at Natchaug the summer before, I dared not mention this and frankly believed it had been a fluke, the opposite of the placebo effect in a sense…So I went along with Banerjee’s decision to summarily cut the Zoloft and hoped for the best. At least, I thought, if things go haywire, it will not be due to self-fulfilling prophecy, a doctor looking for symptoms he expects to find and conveniently finding them. And at least he will know the reason.

A week later, instead of reinstating the Zoloft, Banerjee blamed my sudden “depression” on my refusal of Lamictal, a drug I had not taken in months. Now he was applying to force me to take ECT, something I was terrified of, and to have calculated brain damage.

It was this threat, and the brutality with which the decision was handed down, that started the downhill course of my IOL stay.

The very next day, all hell broke loose. When I entered the conference room, I pushed some important notes I needed Dr B and Laurie to read across the table in front of them. They refused, claiming that I threw the papers at them. Instead, Dr B proceeded to berate me, and told me how he had consulted with other hospitals and providers and had read my records against my instructions and Advance Directive, thus violating my HIPPAA rights. Moreover, he threatened me with a behavioral treatment plan that would not permit me to do art or writing unless I “behaved.” I hit the roof, telling him I would sue the hospital and complain to JCAHO, then summarily left, slamming the door, an act that stemmed from feelings of utter impotence, because I couldn’t actually say in words anything more effective.

It could have ended there. I could have been left alone, to cool down and calm myself. But no, Dr Banerjee had to write for stat meds again, and even though I was on the phone and trying to find someone to talk to, to calm myself, I had to be physically dragged off the chair I sat on, away from the phone and brought to the floor in a physical struggle (because they had attacked first, ie physically grabbed me, I defended myself, instinctually). They could have waited for me to finish the call. They could have waited to see if I calmed myself. I was NOT hurting anyone or even threatening anyone or myself with harm. ALL that I had done, in terms of physical threats, was to throw a lightweight chair at the wall. And that, it was clear to everyone, was intended not as a threat to anyone. Furthermore, it was done and over with. I had left that area and gone to my room. I had then come back and now sat on the chair by the phone, speaking to my interlocutor on the other end. There was no need to pick a fight or encourage a struggle. A wait-and-see policy could have successfully guided the situation to a better resolution not only for the situation at hand but for the entire hospital stay. As the poem by Dylan Thomas goes: “After the first death, there is other.” Once they decided to use restraints, there was no going back. The first time broke everything, So they used them again, and again and more and more freely and without justification but for convenience and punishment.

Back to Feb 6, after sleeping for six hours, I was taken out of restraints just in time for a visit from Dr Cappiello. Observed by my 1:1 staff member, I could barely whisper and dared not tell my outside psychiatrist the full extent of the abuse that had been happening. Nevertheless, she took one look at Dr Taylor’s behavioral treatment plan posted on my wall, and told me that it would be impossible for anyone, even someone who was well, to follow it to the T. She was so worried about me, and about my ability to complete the requirements, even for a “mere 24 hours,” that she intervened. The next day was the single day that Dr Taylor planned to be out of town, so Dr Cappiello asked Dr Mehendru to evaluate me for discharge, telling her that she feared a power struggle had been set up that I could never win.

When Dr Mehendru came to see me, at first I was angry, as the chart indicates, thinking she was just another Taylor flunky, preparing to use more restraints and seclusion, But when she asked if I would like to go home, I took one look at her, saw sincerity in her eyes, and burst into a smile, ready to say yes to anything. Miraculously “cured,” I left the IOL that very same day, less than 12 hours after being released from 4-point restraints and not 4 hours out of seclusion.

However, I was not well. And within two weeks time, I was back in the hospital, this time to be admitted to Yale New Haven Psychiatric Hospital, via their emergency room. Over the next 3 weeks I experienced an entirely different kind of care. At Yale I did not find a staff ready to fight or try to seclude or restrain me. This staff did not need their day to be hassle-free with drugged and cowed patients. Instead, they were trained to remain tolerant, calm and compassionate in the face of sometimes very trying circumstances. It worked. Even when I screamed and yelled and swore, they countered with compassion, and lo, I calmed, no brutality needed, not even IM medication. They had no need or use for cruelty at YNHPH. I felt they sincerely wanted only to understand and help me heal.

Appreciating the shock and trauma of my IOL stay, each staff member I dealt with did everything in his or her power to prove that hospitals do not have to be brutal or abusive. At the IOL they pretend to use “best practices” but in truth it consists only of coercion and control. Treatment at Yale was in fact the “best practice” possible, and it consisted mostly of being consistent. Consistent in being patient-centered, trauma-informed care, consistent in being not cruel and uncaring, consistent in being humane to each and every patient, consistent in extending a compassionate hand and heart to every patient and reacting in a different and more constructive fashion than did the staff at the IOL (or at Middlesex or Manchester etc).

And you know, though I was still the same person with the same problems, loud and angry at times, even “violent” to property in my frustration, and still psychotic, they never responded with a show of force. Why would they? At Yale it would be absolutely anathema to deliberately frighten a patient. What would be the purpose in that, they would think…. They also never showed up at my door with forced medication or pushed me into a seclusion room or strapped me down in punitive 4-point restraints, or any of the other ill-advised responses that my PAD explains are the worst things to do to anyone who is struggling, scared and paranoid. In point of fact, Yale Psychiatric Hospital’s Washington Square unit does not have a seclusion room. They also have a “restraints-free” policy, so they didn’t use those at all either.

The IOL on the other hand with its “We only use restraints and seclusion if we have to“” policy, restrained me countless times, and for many more hours than was even legal. When I woke up that last morning I spent there, the room opposite me was occupied by yet another person in restraints! That is because, you know, once you allow a staff to use restraints a little, it only takes a little to use them a lot. And once you sanction the use of restraints and seclusion at all, it is only time before someone abuses them and abuse becomes the norm.

Some final points:

CMS regulations on use of Restraint and Seclusion

Restraint or seclusion may only be imposed to ensure the immediate physical safety of the patient, a staff member, or others and must be discontinued at the earliest possible time.

(ii) Seclusion is the involuntary confinement of a patient alone in a room or area from which the patient is physically prevented from leaving. Seclusion may only be used for the management of violent or self- destructive behavior. This means that IOL’s definition of seclusion as being “kept alone in a room to which the door is locked” is wrong. I protested that I had been secluded all along, for a good two weeks before they instituted formal seclusion. I was not violent or self-destructive, and certainly not imminently dangerous to self or others…NEVER was anyone in immediate physical danger.) Yet you allowed them to abuse me and seclude me because I was loud and made people uncomfortable…Instead of dealing with me, you let them torture and punish me. WHY? WHY? Why? I want an answer to this question.

Worst of all, using restraints doesn’t work to make either the patient calmer and safer or the unit a calmer safer environment to work in for staff. In truth, things only go from bad to worse once you restrain an unruly patient…Violence only begets more violence…Moreover, when I was at Natchaug Hospital, i was told by one of their mental health workers that she had wanted to experience the process of being four-pointed herself so she could identify with patients. She was told no, because as the aide informed me, hospital administrators feared it would be too traumatizing.

Where do we go from here? Well, I will never return to the IOL; inflexible IOL policies have no safeguards in place to properly protect patients. I came prepared, Dr Banerjee said so. And yet it did me no good, because all the preparations and advance directives in the world do me no good when staff is given carte blanche by their own director to ignore them.

So where we go from here is largely up to you. You can simply ignore what I have written, tear these sheets up, justify all staff behaviors and throw away my complaint as meaningless information. After all, Dr Mucha, you are retiring in a few days, so you can leave all this behind without a care in the world. Ms Blair, even you don’t need to believe my words, you can simply trust the superficial, documented words on the chart, and if necessary, the lies of staff as to what happened. What you don’t know won’t hurt you. But lies they are, and lies they always were, even as they told me what they were going to write in order to get away with restraining me as punishment. The problem is that not everyone was so clever as to cover her footprints, so once or twice the truth was written down and not corrected later. I will show you those pages if you wish to see the evidence I have.

The problem for you is not that I am going to sue you for malpractice, No lawyer is going to take my case on a contingency basis. No one in this country or anywhere in the world cares about a mental patient who was tortured in an abusive hospital situation but didn’t die. I would be worth money dead, yes, but not alive…Your staff knew this and that is why they knew they could get away with it…No, the problem for you is strictly moral, one of conscience. But if you can live with it, then I cannot change a thing.

The IOL could change, it could adopt a philosophy of patient-centered, trauma-informed care, as Yale has done, but that would require changes that would involve every aspect the unit. I doubt IOL administration has the ethical or moral fiber or the political will to do it. I think you choose to remain a brutal, backwards and controlling institution because it feels easier and you believe it is cheaper, though both notions are mistaken. Sometimes it just feels easier to think mistaken thoughts than to challenge them and learn to think in new ways, absorb new paradigms. This is unfortunate because in the end the IOL would save money and patients would heal with less trauma, if you implemented changes that actually worked rather than resorting to the old ways of cruelty, coercion and abuse.

That is all I have the time and energy to say, for now.

Health, Health Care Reform, Hospital, Institute Of Living, Mental Illness, Seclusion and Restraints

My Psychiatric Advanced Directive — IGNORED at the Institute of Living at my Expense

February 14, 2013 Phoebe Sparrow Wagner 7 Comments

These are the first two pages, including a note from the cover page, of my very very detailed Psychiatric Advanced Directive, and I think you will see why what happened at the Institute of Living, the psychiatric section of Connecticut’s Hartford Hospital, NEVER should have happened. Not only did I bring a hard copy of this PAD, but I wore a medical bracelet with a code for a very complete online medical record, with uploaded documented evidence, both of narcolepsy diagnosis and need for medication, proof from longtime outside mental health providers that I do NOT have “borderline personality disorder,” and other such assistive documents…ALL were soon ignored completely in the effort to discipline and punish me “for not following directions” i.e. not getting better fast enough and speaking my mind to the psychiatrist.

__________________

Prominent NOTE on cover page:

Miss Wagner has experienced multiple episodes of severe psychological and physical trauma. She must NOT be subjected to either physical or mechanical restraints or involuntary seclusion at ANY time. The use of either imposes a serious risk of re-traumatizing and injury, leading to regression and severe worsening of symptoms.

Pg 2.

HOW TO INTERVENE IN A CRISIS:

DE-ESCALATION IS ESSENTIAL

1. PLEASE REMEMBER: I can calm down if YOU follow these steps and do not threaten me, order me around, or approach me in anger or in fear.
I need one person to talk to. I should be approached calmly, by someone who will speak in a kind and respectful manner, understanding that above all:
I AM SCARED and my anger masks fear. I am not dangerous. I WILL ONLY FIGHT IF YOU ATTACK ME. Please remember that any show of force and people ganging up on me to administer forced medication will be felt as an attack.
I can be persuaded to take oral medication, usually, if this is negotiated with dignity and kindness and not by means of threats.
DO NOT ISSUE ULTIMATUMS you won’t back down from…That will push me into a corner and you too, and will serve nothing but to escalate the crisis.
A calm unthreatening and unthreatened person should ask me calmly and patiently if I can speak in a lower tone of voice, so she can hear me better. Ask me if I can take a deep breath and try breathing techniques that will have flown my head in the moment of crisis.
Should you have a COMFORT room available, you can guide me gently to it but do not close me alone. Make sure I am warm…
ABOVE ALL YOU NEED TO BE PREPARED TO LISTEN TO ME. This is not just a matter of forcing medication. Medication may not even be needed if you hear what is going on and what the problem is.
If you take these simple steps, it is virtually guaranteed that the situation will resolve calmly and without any need to resort to the sorts of violence that would permanently damage and re-traumatize me (or produce secondarily negative behaviors afterwards): seclusion, forcible injections, or mechanical restraints or physical holds.

p 3

STATEMENT TO CAREGIVERS

It is vitally important that you understand that despite a few previous in-hospital assessments, I do not have a personality disorder, borderline or otherwise (you can confirm this with any of my longtime outpatient providers) and that if my behavior seems out of control, it is because I am out of control: I literally do not at the time know what I am doing or why. I am not manipulative or attempting to achieve secondary gain. The fact is I have had tertiary CNS Lyme disease and after positive PCR and Western Blot tests during treatment, I was informed the condition is likely incurable. (Dr ******* of ****** NY, will confirm this.) During the initial illness, my brain developed multiple lesions, visible on MRI, which may predispose me to temporary emotional and behavioral extremes and abnormalities but these are NOT my norm. Anyone who knows me well would confirm this, if you asked them.

You need to understand that I am not always able to communicate the extreme fear I feel, the global paranoia that I experience, but because I feel so threatened and unable to communicate clearly about it I may become very angry at the hospital situation. I am not an angry person. I do have trauma issues, as many people do, which may be exacerbated by being in the hospital.

Please be aware in advance that my “memory in the p.m. for what happened in the a.m.” is often faulty. That is just how it is. When in crisis, I have little ability to recall from moment to moment what happens. This is why it is essential that I be able to write things down. I have lost many years to this amnesia and if I suffer additional trauma it will only make it worse.

I beg of you, do not make assumptions about me. Do not make assumptions about my state of mind. Do not “put two and two together” in your mind without asking me if the conclusion you have drawn is the correct one. You do not know what is inside my head without asking me.

Ascertain whether the information you have at hand is correct. Too many records and hospital charts have been drawn up (because “patient is not communicating”) on faulty information from earlier charts or information gleaned from others but not from me, and the consequences to my treatment have been devastating. PLEASE CHECK MY INTERACTIVE HEALTH RECORD ONLINE at www. — .com Use code ***** to get access.

I have been traumatized by abuse, sexual assault and by brutal treatment in hospitals, from being deliberately choked and given forced ECT to being kept in four-point restraints for several days at a time. So if I experience seclusion or restraints or even that euphemistic obscenity called a “therapeutic hold” it will be devastating and counterproductive. Such treatment invariably leads to increased anger, regression and worsening of symptoms, and my behavior becomes unpredictable afterwards. This is a response to trauma NOT because of any inborn temperamental disorder. I have already outlined a better way to deal with me and help me on page 2.

I KNOW YOU MAY NOT APPROVE OF POLYPHARMACY. But you need to understand that I must take the antipsychotic drug combination: Abilify 15mg with Geodon 160mg, a TWO-Drug regimen. Monotherapy does not work. I have tried many solo drugs over the course of 4 decades – Thorazine, Mellaril, Haldol, Prolixin, Clozaril, Risperdal, Seroquel, Zyprexa and others – ALL monotherapy has failed.

I will not take any drug that induces weight gain. If you force the issue, know that it will be a useless endeavor because I will stop taking it immediately upon leaving the hospital.

Finally, understand that if I am here in the hospital it is for a reason, and I want only one thing: to get better and be out of here as soon as possible. You can traumatize me and worsen my symptoms and keep me here too long, or you can work with me to achieve my goal, which should be the same as yours. I don’t see any other alternative.

Respectfully,

Pamela S. Wagner

Now, I think that is about as crystal clear as it can be, no? And indeed, Dr Banerjee, my first psychiatrist LOVED it. Said so, and raved about how complete both were, both the PAD and the online medical history which he downloaded, printed out and brought with him to our first consultation. So what happened? YOU tell me! I will write more about what I think happened later. I am still trying to figure it all out.

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WAGblog: Dum Spiro Spero

Category Archives: Seclusion and Restraints

The DEEPER DIG at Vermont Digger — on Mental Health Care challenges

Recovery from “chronic schizophrenia”

What are/were the most significant barriers to your recovery from “mental illness”?

Institute of Living, 2013, Torture and Illegal Confinement Part 2

Institute of Living, Hartford CT, torture and illegal confinement in 2013

Five Point Restraints At Vermont Psychiatric Care Hospital (cont)

Open Letter to Kathryn Power of SAMHSA

Hartford COurant Article (that won’t be) about Michael E Balkunas, MD, Chief of psychiatry at HOCC

Woman, thrown into seclusion and abandoned – New Trading Card

Article about Michael E Balkunas,MD !

Google Review of Michael E Balkunas, Unit Chief of W-1, Adult Psychiatry, Hospital of Central Connecticut

Trio of Psychiatric Abuse Collages: encounter, restraint and seclusion

Nude Schizophrenic in Restraints While Bored Nurse Looks On

Terrified Patient in Restraints

Seclusion Room: Cell or Sanctuary — Amazing Article from 1959

THE SECLUSION ROOM – CELL OR SANCTUARY?

By HUMPHRY OSMOND, M.D., 1959

Article From New Haven Register On Connecticut’s Excessive Use of Restraints, With Full Commentary…

Connecticut hospitals restrain psychiatric patients at double national average

CONNECTICUT VS. THE NATION

LAGS IN DISCHARGE PLANNING

Impromptu Starbucks Sketch (Hey TexasTom, If you are brave enough, so can I be…!)

My Challenge to the IOL: Stop Using Restraints and Seclusion NOW

Open Letter to the Director of the Institute of Living, Dr Theodore Mucha, and Ms Ellen Blair, Director of Nursing

My Psychiatric Advanced Directive — IGNORED at the Institute of Living at my Expense

"While I breathe, I hope"

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THE SECLUSION ROOM – CELL OR SANCTUARY?

By HUMPHRY OSMOND, M.D., 1959

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CONNECTICUT VS. THE NATION

LAGS IN DISCHARGE PLANNING

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"While I breathe, I hope"