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 happen
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.
Please understand that I know I was a difficult patient. I was loud and upset and hard for some staff to deal with. That is precisely why my Psychiatric Advance Directive was written out the way it was, and why I made my medical and psychiatric history online so available. When ill, I am frightened and paranoid, which makes me easily roused to irritability and hostility. I know this, from a distance as it were. But knowing this now does not mean i was in control of my behavior. I am by nature neither temperamental nor prone to temper eruptions or throwing things. In addition, I am extremely modest, hardly one to disrobe or urinate in public. My friends and family have at times variously labeled me “stoic” and “peacemaker,” which should tell you a lot. But that I did all these things on Donnelly 2 South both horrifies me and concerns me because these behaviors point to something going on distinct from psychosis: they point to abuse and trauma.
Let me make it very clear that I have behaved in such outrageous ways before, yes, but only in response to extreme circumstances – as when i was subjected over and over to restraints and seclusion in a horrific and sadistic fashion at Manchester and Middlesex hospitals in 2009 and 2010. It is too bad that when Amy Taylor took it upon herself to violate my HIPPAA privacy rights and investigate my previous admissions, without asking my permission (which I never would have granted) she failed to make the connection between their abuse, and my subsequent behaviors there…It turns out all she drew as a conclusion was that if those hospitals could use restraints and seclusion ad libitum, well then, so could she. It didn’t seem to matter to her that in 2009 and 2010 those measures not only didn’t work, they made things worse when Dr Taylor followed their examples, the same results ensued, just as my PAD predicted.
I was admitted to Donnelly 2 South, and I came in with the very detailed Psychiatric Advanced Directiveas as I said. I made it very clear that my online electronic medical record was available. It included documents such as my narcolepsy diagnostic consult and special documentation proving my need for a higher than usual dosage of Ritalin, written by my former sleep specialist who was also my psychiatrist from 2000-2009. Included as well was a letter she wrote to my present psychiatrist, Dr Angela Cappiello, explicitly stating her conviction that I do not have a personality disorder, borderline or otherwise, and never did.
According to Dr Sanjay Banerjee he read every page of documents that I brought with me. That is what he told me. Moreover, when he spoke with Dr Cappiello, he brushed off my concerns about anyone misperceiving me as having a personality disorder. My brother, Philip Spiro, MD, himself a psychiatrist brought the same matter to the fore again when in discussion with Laurie Denenberg, but her response was much the same:
“Personality disorders are not a part of the picture here. We intend to honor her PAD. We are glad that she has had the foresight to prepare such an document. “ If this was so, then how did it come to pass that Amy Taylor wrote on my discharge summary that I have a “long history of Borderline personality disorder” and herself diagnosed “Personality disorder NOS with borderline traits”? I was being treated for four weeks for an active psychotic disorder. She would have no way of knowing whether or not I had any personality disorder, given the axis I diagnosis and you know it. She did too.
Dr Mucha and Ms Blair, you were not there on the unit or in the quiet room with me, so were you even aware of what happened half the time? Did you know for example, that on Februrary 6, I walked away from the quiet room, strolled down the hall, looked out the window and slowly retraced my steps back to the quiet room. But when I arrived I I was confronted by a cohort of staff who proceeded to 4-point me, even though I was quiet and put up no resistance? Not wanting to give them any reason or justification, I passively lay down on the bed and placed my own limbs out for the restraint cuffs, saying, (I quote my journal entry made later that evening): “For shame. You ought to be ashamed of yourselves. I am not and never was a danger to myself or others.” Their response was “ You refuse to follow directions so we do not know what you will do. This is not punishment, Pamela, this is what your behavior brings on every time.”
Were you aware that they always restrained me, spread-eagled, so tightly I couldn
‘t move a muscle? That they never permitted bathroom breaks or even let my hands free to eat? That I would fall asleep rapidly after three injections –whether calm or not, it was a routine punishment needle in the buttocks: Haldol, Ativan and Benadryl —and they would invent reasons to maintain me in restraints even after asleep for hours? Or when I woke, groggy and hardly dangerous to anyone, they would grill me with questions that I could not answer, and they would use my inability to respond as reason not to release me?
Later in the evening on Jan 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:
“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 IOL’s definition of seclusion as being “kept alone in a room to which the door is locked” is wrong. I protested that I had been secluded all along, for a good two weeks before they instituted formal seclusion. I was not violent or self-destructive, and certainly not imminently dangerous to self or others…NEVER was anyone in immediate physical danger.) Yet you allowed them to abuse me and seclude me because I was loud and made people uncomfortable…Instead of dealing with me, you let them torture and punish me. WHY? WHY? Why? I want an answer to this question.
“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.