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.

7 thoughts on “My Psychiatric Advanced Directive — IGNORED at the Institute of Living at my Expense”

  1. Hi Cabrogal,

    Until now I never lived in a state where a PAD was even marginally attended to, so now that it is a legal document, once signed sealed and delivered, we will see what happens, But in my past experience the only thing between me and the whims of the sadistic doc was the rubber stamping idiot judge of the various probate courts in the counties I lived in…Mental Health Review Boards??? No such thing. NO OVERSIGHt, like I said…The Probate judges? they are not really judges, just lawyers and they need not even be lawyer, as they are just assigned the job and it is a patronage job,..No requirements for it in Connecticut apparently but that you show up and make decisions on a few cases once in a while….

    Yeah, right.

    SO you see why I fled for my life????

    pam

  2. IN their world view, while they are in the process of denying every smidgen of reason or rationality or personhood that I ever possessed or still do, they consider themselves of course the epitome of sanity and health and by necessity must impose their authority over my autonomy

    I think we’re in agreement there.

    But I’m not so sure about 100% binding PADs – or any advanced directives for that matter.

    The problem is that no-one can really anticipate the future and to try to make PADs comprehensive enough to cover all likely circumstances you’d end up with an epic-length document that would need to be regularly updated as things change (e.g. Changes in health status, life situation or medical technology. One example I can think of would be if you became increasingly intolerant of your dual therapy and found a more effective monotherapy but was forced to undergo the old treatment and go cold turkey on the new one by your own PAD). I don’t think too many people who are likely to need PADs would be able to keep their paperwork up to date and legally validated. There should probably be some mechanism for bypassing it under certain circumstances – especially if the patient is insisting it no longer applies (Can you imagine the Kafkaesque nightmare of being forced to submit to the authority of a younger, less well informed you?) – but I can’t really imagine what might work.

    Of course the best answer is to have someone you trust who is well informed about your wishes and can make decisions on your behalf when the shrinks insist that you no longer can. But to have someone like that in your life is an incredible privilege and a long way from the lived reality of most people considered mentally ill. It seems to me that more often than not family members will take the side of the shrinks in any conflict.

    they are used according to the whims of the doctor and nurses, and with complete impunity, and no oversight whatsoever…

    Here there is theoretical oversight by the Mental Health Review Tribunal, but they are just a rubber stamp for the doctors. I’ve never heard of the NSW version going against the wishes of the treating shrinks, though its interstate equivalents sometimes do.

  3. HI Cabrogal,

    Yes, but to those same people nothing makes MORE sense. IN their world view, while they are in the process of denying every smidgen of reason or rationality or personhood that I ever possessed or still do, they consider themselves of course the epitome of sanity and health and by necessity must impose their authority over my autonomy, NO questions asked (not on their part, and if I asked any, well, they are of course simply disregarded…) It is really an impossible situation unless and until PADs are given complete legal validity that cannot be abrogated under ANY circumstance, not even an emergency one, because if you allow abrogation in a a so-called emergency, you just are allowing abrogation period, and the situation becomes as it is in Connecticut with Seclusion and Restraints, where they are used according to the whims of the doctor and nurses, and with complete impunity, and no oversight whatsoever…

  4. Thomas Szasz has been calling for legally enforceable psychiatric advance directives since the sixties – to no avail and to considerable criticism from the psychiatric mainstream.

    It seems to me that when you’re having an episode – especially a psychotic one – not only is everything you do considered a symptom; everything you have ever done is.

    Nothing makes me crazier than people who think themselves sane and therefore qualified to disregard my autonomy in favour of their authority.

  5. It’s been almost a month since Pam sent me an email regarding something she was getting ready to blog, and I haven’t heard anything from her since. I’m worried. If anyone knows where and how she is, please send me an email. You can reach me here: ladyquixote@live.com

    Pam is a dear and I miss her words.

  6. Hi randye,

    Thanks for commenting. You are lucky if you had a good response at all to your “interference” as in my experience the last thing mental health employees and psychiatrists want are 1) informed consumers and 2) even less, informed relatives!

    I will say however that almost always the Wethersfield police have treated me very well, very understandingly, better than the health care workers at any ED. And while a few EMTs have been snide, usually they have been adequate, though not stellar. I must congratulate the Wethersfield police, though. They really have never been nasty or bad to me, not once. I dont even remember the time at Y2K negatively, because they didnt know me then.

  7. Hi Pamela – Wow. I don’t know what happened at IOL, and can’t comment on that, but as the Mom of someone who has schizophrenia (and has been fortunate enough to have been treated well by CIT-trained officers as well as many hospital intake staff members), I applaud your efforts to clarify how you feel, and provide specific directives to make the situation easier for everyone.

    When my son was going through “medication roulette”, I watched and noted symptoms all week long so that therapists and psychiatrists could have a 24/7 view of side effects. Some welcomed the info, others said “I didn’t have time to read it.” Guess which approach worked better, and eventually saved time and pain?

    Thanks for your perspective.
    Randye Kaye
    author “Ben Behind His Voices”

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