Category Archives: Institute Of Living

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

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.

(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 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.

 

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

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 27th 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 5th, 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 6thth, 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.

PSYCHIATRIC ADVANCED DIRECTIVE -2014 – Words to Caregivers (Short and Simple)

I am uploading my new PAD, IN ORDER TO AVOID INJURIES SUCH AS THESE, brought on in Jan 2013 at Hartford Hospital’s Institute of Living. and photographed the very day I was released.

Now I have a torn left rotator cuff..anything to do with this, I wonder? from IOL 4 point restraints
Left shoulder,,,
Left shoulder,,, caused by brutality  or four point restraints at IOL
Bruises from locked leather retraint cuffs on for many hours, immobilizing me
Bruises on bare ankle from long term use of 4-point  leather restraint cuffs, locked so tightly i could not move. — from IOL 2013

Although I brought the PAD both to the Institute of Living in Jan 2013 and to Yale in Aug 2013, I don’t know what happened that it was abrogated so deeply and so widely. At Yale, they forced medication on me, holding me down three times daily at times, resulting in such psychic regression that as you have all read, I routinely stripped naked, defecated on the floor and smeared feces all over the wall. That I was at one and the same time attempting to communicate with these people, by WRITING WORDS IN MY SHIT, was utterly disregarded by all at the time. But I assure you that if I was regressed and psychotic in doing such things, I was nevertheless still verbal! I am also virtually certain that had they not grabbed me, pinned me to the floor and held me down for three painful injections in the buttocks of a drug that Soviet dissidents have long called pure torture (Haldol in the 60s/70s was the subject of many a televised congressional hearing, and discussed in just such terms…) my response would have been very very diffferent indeed. 

 

That said, they did what they claimed they had to do, and when I left, I left feeling absolutely convinced that my life was and had been mortally threatened, that I could NEVER return, that I would literally be murdered if ever I dared.   Nothing more need be said about such sadistic places as the Institute of Living at Hartford Hospital. Even in the Patient Care Guide and Journal, they are at pains to make it clear that any loud or out of control behavior will be dealt with swiftly and severely, with seclusion, restraints, and even charges pressed by the local authorities! (NO attempts to soothe the traumatized patient or act on what CMS has urged be the best practices of trauma-informed and patient-centered-care at the IOL. No, at Hartford Hospital, it is all about NO SWEARING and staying quiet, non-disruptive. The “Or else” threat behind it all is not even implied but openly stated in their rules and obligations section. Why ANYONE would want to set themselves up for treatment in such a place is beyond me…They have even edited out any attempts at kindness from the old handbook that I was given just a year ago.   Yale at least attempted to live up to a policy of Trauma-informed  and Patient-centered care. When they said No Restraints policy, I believe they meant it, at least in terms of NO MECHANICAL leather and shackles restraints.

 

And I believe that had Robert Ostroff MD, NOT been in charge of my care during the week or two that Robert Milstein MD was away, some of the brutality might not have occurred at Yale and I might be writing less devastated things about the Washington Square 2 unit, a place I had once so hopefully described as a “soft, gentle place to land in a psychiatric crisis.” But as much as because of my outrageous and disruptive behavior in response to their trauma as because of their repetitive violence and cruelty, I can never return there…a sad thing I suppose, since there is literally no safe place in Connecticut for me.* *more on this later or in another post.  What I have posted here is an update in order to Keep me OUT of the hospital as much as to direct my care if I am put inside, It is not the whole thing, only the first two or three pages, I would be happy to upload the whole thing so you can see how I did it, if anyone indicates interest. Let me know. So far it was always the first three pages that got people’s attention.   ______________________________________________________

Pamela Wagner’s

PSYCHIATRIC ADVANCE DIRECTIVE 2014

 

FOR WHEN I AM HOSPITALIZED OR INFORMATION TO HELP TO AVOID IT

 

Miss Wagner has experienced multiple episodes of severe psychological and physical trauma, including date rape, the suicide of two friends, and domestic abuse by caregivers. She should NOT be subjected to restraints, involuntary seclusion, or forced medication. The use of these inevitably leads to re-traumatizing and injury, regression and severe worsening of her psychiatric symptoms.

 

HOW TO INTERVENE IN A CRISIS:

  • DE-ESCALATION IS ESSENTIAL  
  • DO NOT TOUCH ME OR GRAB ME.
  • DO NOT LAUGH AT ME.
  • I WILL CALM DOWN IF YOU REMEMBER THAT:

 

  1. I AM SCARED AND PARANOID. I ONLY FIGHT IF I FEEL UNDER ATTACK.  DO NOT USE A SHOW OF FORCE, AS THIS WILL FRIGHTEN ME MORE.

 

  1. DON’T ISSUE ULTIMATUMS…That will push us all into a corner and serve nothing
  1.  AN UNRUFFLED PERSON SHOULD ASK ME TO TAKE A DEEP BREATH, and try other verbal calming techniques. I am always grateful for people remaining calm when I am upset.

 

  1.  NEVER LEAVE ME ALONE IN A BARREN (seclusion) ROOM.

 

  1. A WEIGHTED OR WARMED-UP BLANKET SOOTHES ME. SOMETHING ICY TO EAT CAN ALSO HELP.

 

  1. PLEASE LISTEN TO WHAT I HAVE TO SAY.  Medication may not be needed if you hear what the problem is.

 

  1.  IF NECESSARY, YOU MAY PERSUADE ME TO TAKE ORAL MEDICATION, if you negotiate this with dignity and kindness. Keep speaking to me calmly and explain your reasoning.

 

*I cannot reiterate enough that if you utilize 4-point restraints or seclusion, it is virtually guaranteed that you will see regression, increased hostility and aggressiveness as a result. Please don’t do something everyone will regret.

 

 

ADDITIONAL STATEMENT TO CAREGIVERS (PLEASE READ)

It is important that you understand that I do not have a personality disorder (you can confirm this with Dr Angela C——, or any of my longtime outpatient providers and friends and family members). If my behavior/emotions seem out of control, it is because I am out of control – temporarily.

I have had tertiary CNS Lyme disease, which I was informed after multiple positive PCR and Western Blots during treatment was likely incurable. During my initial illness, my brain developed MRI lesions which may predispose me to temporary emotional and behavioral abnormalities but these are NOT my norm. Anyone who knows me well would tell you that, if you ask them.

I am not always able to communicate my fear but because I feel so threatened and unable to communicate clearly about it (lest there be consequences to me) I may become very angry at the hospital situation. I am not an angry person, but I do have trauma issues, as many people do.

Please be aware that I am sometimes mute, in frustration and overwhelmed by circumstances. You can provide me with a pad and pen to facilitate communication, but berating me into speaking will no purpose and may only precipitate anger.

Ascertain from me whether the information you have at hand is correct. Too many records and hospital charts have been drawn up on faulty information from earlier charts or information gleaned from others but not from me, and the consequences to my treatment have been devastating.

I would prefer NOT to take any medications and will resist them. I want to experience my LIFE AND MY FEELINGS. If you insist on meds, the ones that work best are _______.

I will not take any drug that induces weight gain. If you force it, know that I will fight you, tooth and nail.

 

Open Letter to Harold I. Schwartz, MD, Psychiatrist and Director in Chief of the Institute of Living at Hartford Hospital Behavioral Healthcare

April 16, 2014

Dear Harold Schwartz, Director of the Institute of Living at Hartford Hospital

I believe that I was profoundly harmed by the treatment I received in 2013 on Donnelly 2 South at the Institute of Living at Hartford Hospital, and that what the staff did to me was not only unethical and cruel but that it crossed the line into illegality from the very first. Psychiatric patient abuse is a pattern in Connecticut hospitals, but it was most egregious at the Institute of Living because the staff told me that they knew what they were doing was wrong but that they would get away with it anyway.

That I know I was a difficult patient never justified staff behavior towards me. I was loud and upset and hard for them to deal with, yes. That is precisely why my Psychiatric Advance Directive (PAD) 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 emotions. 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 disrobed and urinated on the floor on Donnelly 2 South both horrifies me and concerns me because these behaviors point to something going on distinct from my psychosis: they point to my having been subject to abuse and trauma at the hospital itself.

Let me make it very clear that if I have behaved in such ways before it was only in response to similar extreme circumstances – as when i was subjected over and over to restraints and seclusion in a horrific and sadistic fashion at Manchester Hospital in 2009 and similarly at Middlesex Hospital in 2010. It is too bad that when Sanjay Banerjee MD and Amy Taylor MD took it upon themselves to violate my HIPAA privacy rights and investigate my previous admissions, without my permission (which I expressly refused to grant) they failed to make the connection between the abuse, and my subsequent behaviors…It turns out all they drew as a conclusion was that if those hospitals could use restraints and seclusion ad libitum, so could they. It didn’t seem to matter to Dr Taylor in particular that in 2009 and 2010 measures such as seclusion and restraints not only didn’t work, they made things worse. Not surprisingly, when Dr Taylor followed these examples I regressed completely, just as my PAD predicted.

I was admitted to Donnelly 2 South, and I came in with a very detailed Psychiatric Advanced Directive as I said. I made it very clear that my online electronic medical record was also available. It included documents such as my narcolepsy diagnostic consult and special documentation assessing my need for a higher than usual dosage of Ritalin, written by my former sleep specialist, Mary B O’Malley, MD PHD 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, NOS, borderline traits, or otherwise.

According to Dr. Sanjay Banerjee he read every page of these documents. That is what he told me. He even praised me, saying he wished every patient would come so prepared. 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 up the same matter when in discussion with Laurie Denenberg, LCSW, 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 a document.”

If this was so, then how did it come to pass that Amy Taylor, MD wrote on my history and 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 Axis 1. In any event, she could have no way of knowing whether or not I had a personality disorder, given an active an Axis I diagnosis.

On or around February 4, 2013, I walked in frustration away from the quiet room where I had been held captive for nearly three weeks, strolled down the hall, looked out the window and slowly retraced my steps back to the quiet room, which I had been expressly told was NOT a seclusion room (the definition at Hartford Hospital’s Institute of Living of a seclusion room is a “room to which the door is locked.”) But when I arrived I was confronted by a cohort of staff who proceeded to 4-point restrain me to the bed, 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.”

From that point on, the threshold for restraints was extremely low. They always restrained me, spread-eagled, so tightly I couldn’t move a muscle. They never permitted bathroom breaks or even used a bedpan, instead they made me defecate in my clothing. They never even let my hands free to eat. I would fall asleep rapidly after three routine punishment needles in the buttocks: Haldol, Ativan and Benadryl—whether I just had my regular meds or not, and they would invent reasons to maintain me in restraints even after I had been asleep for hours. When I woke, groggy and hardly dangerous to anyone, they would grill me with questions that I could not answer. They would then use my inability to respond as reason not to let me out, even when I asked, as the chart recorded, in a “soft sedated voice” for release. They would re-inject me, to put me back to sleep instead.

In the evening on Jan 5th, for the second time that day, they brutally 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. But in point of fact, though, I could never earn my way to release from restraints by good behavior or quietly, calmly asking for release. I had never done anything to earn my way into them in the first place. I was never violent until they threatened me. They refused to release me until I literally cried, “Uncle” when they told me to.

As to those vaunted “shows of force” what did they expect? Presented with a cohort of threatening staff personnel I saw one thing: an impending assault.  I know they anticipated my panic; they 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 when they forcibly, physically 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 the face. I had done nothing but refuse to enter the body bag willingly. I simply was passive. I did not fight or resist until they grabbed my body and assaulted me.

But none of it should have happened. My Advanced Directive 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 anyone could possibly approve in advance, permission to use restraints and seclusion “just in case they are needed”. 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…

“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 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 from the first time a staff member grabbed me and pushed me with his lower torso, I ceased improving, and my symptoms went downhill. Did they really think they were being kind and compassionate?

Staff violence begets violence….

I tried to get help even when on the unit, at least I tried when I was free to, to make calls or leave my seclusion… that is to say, forced three -week-long stay in the quiet room last winter. I made many calls to the hospital’s patient advocate office, but the sole time anyone made contact was when the advocate 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, essentially a hospital employee, and her refusal to respond, contributed to my ongoing panic and desperate feelings of aloneness and depression. No wonder Dr. Sanjay Banerjee attempted to force ECT on me, without any prior discussion of it with me whatsoever.

And where did the ECT discussion come from? My PAD states in no uncertain terms that I will 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. I have already had FORCED ECT and it traumatized me terribly. Also it failed to work.

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.  A week later, instead of reinstating the Zoloft, Banerjee blamed my sudden “depression” on my refusal of the anti-seizure medication, Lamictal, a drug I had not taken in 6 months. Now he was applying to force me to take ECT, something I was terrified of, and to have calculated brain damageIt 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 weekday, all hell broke loose. When I entered the conference room, I pushed some important notes across the table that I wanted Dr Banerjee and Laurie Dennenberg to read. They refused, claiming that I threw the papers at them. Instead, Dr Banerjee 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 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 four—point 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 5 or 6, after sleeping for six hours, I was taken out of restraints  conveniently just in time for a visit from Dr. Angela Cappiello, my outside psychiatrist. Observed by my 1:1 monitor, I only dared whisper and dared not tell the doctor the full extent of the abuse that had been happening. Nevertheless, she took one look at Amy Taylor MD’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 properly. She was so worried about me, and about my ability to complete the treatment plan’s requirements, even for the required “24 hours,” that she intervened. The next day, the single day that Dr. Taylor planned to be out of town, 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. Within two weeks time, I was back in the hospital, this time 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.

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, yet 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 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 Institute of Living 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, the room opposite me was occupied by yet another person in 4-point restraints! That is because once you allow 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.

 

I would like your response to this letter, I have sent it to many people within the state government and outside of it, But you may have the first response. Also you may be interested in the youtube video of my artwork  which can be found at this site:

Prior to when you allowed the staff to body bag and restrain me, when I had done nothing wrong but leave the non seclusion quiet room, and you refused to come to my assistance, you had asked to see my artwork. Instead you left me to be tortured. Well, here is some of the art you might have seen had you rescued me from my abusers.:

Sincerely

Pamela Spiro Wagner

The final one you never saw in featured in the post below this one.

Four-point Restraints at the Institute of Living, Hartford Hospital for 19 hours +

Restrained at the Institute of LIving for Not Following Directions....Dr Amy Taylor presiding
In Restraints at the Institute of Living, Hartford Hospital, 2013, for Not Following Directions….Dr Amy Taylor presiding

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

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.

In 4-point Restraints for Disobeying the Rules at the Institute of Living, 2013

Look at the Caption and the Sign on the wall, both are important! This really happened...
PSYCHIATRIC PATIENT IN FOUR-POINT RESTRAINTS
A study in perspective...The tin foil on the wall didn't come out as well as I wanted it to, but the rest is okay..I hope...
A study in perspective…The tin foil on the wall didn’t come out as well as I wanted it to, but the rest is okay..I hope…
Study in pencil of plastic container of doodads
Study in pencil of plastic container of doodads
Study in pencil of plastic container of doodads
Study in pencil of plastic container of doodads
Bearing the Elephants is a spontaneous inkblot drawing...The black spots were inkssplotches that stimulated the drawing.
Bearing the Elephants is a spontaneous drawing…The black spots were inksplotches that stimulated the drawing. I think if you click on the drawing you may get more information…

So that is all I have to post today as I have too many errands to do before my meeting at the Institute of Living. Wish me luck everyone! I don’t expect much from them, I must say. Not much at all, after all, no one is going to acknowledge any wrong doing, much less apologize or even want to improve the situation. Not as at Natchaug where at least they gave lipservice, though it turned out to be lip service ONLY…to wanting to make Natchaug a better place. (Yeah, it turns out they — THe MFs at Natchaug Hospital who said they wanted me to speak — were just stringing me along, never did have any intentions of having me back to speak to the Medical staff, just mollifying and mollycoddling me as I sort of thought they were…Dr Deborah Weidner, the Natchaug Hospital CMO, is a politician as much as a psychiatrist and has to be, right? NO…but that is another subject altogether. I won’t be going back to Natchaug ever again either , not as a patient, as was understood. They don’t have a doctor who will see me, so why would I care about helping them improve? I did care. I do care about all their other patients and I care about their Mental Health Workers, who were the one group that really did do their jobs…and most of the nurses too…But the problem is the Admin of Natchaug doesn’t care, and the senior nursing staff is burned out and problematic…But I am not going to go there. Because THEY DON’T CARE that I care!)

Anyhow, as I said, I have errands to do and I guess I should maybe wash before I go to the IOL, seeing as how I haven’t done so since my trip to NC…It might be  a good idea, though a real drag. I hate it…I hate the very idea of getting under the running water and getting wet is such a hassle. But gotta keep up the appearance for today! After that, who gives a damn…

Okay, so thats it for now. I’m outta here. Thanks for all the FB support, guys. I will let you know how it goes.

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

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 couldnt 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 Benadryland 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 6th, 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…

 

“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 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 IOLs 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.

“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 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.

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

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. 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.
  2. 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:
  3. 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.
  4. I can be persuaded to take oral medication, usually, if this is negotiated with dignity and kindness and not by means of threats.
  5. 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.
  6. 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.
  7. 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…
  8. 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.
  9. 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.