Complexity

Jonathan Keyes
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The movement to radically reform the modern mental health system is rooted in a desire to offer people going through emotional distress a wider variety of options for care.  As a society we have largely shifted to a model of care that is limited to a select few options that primarily advocates the use of strong psychotropic drugs and simplistic diagnostic labels for complex and widely varying narratives.  Recently I read that from 1998 to 2011 there has been a 400 percent rise in the prescription of antidepressants.  Likewise in Canada, at least 60 percent of female prison inmates are prescribed psychiatric drugs.    Most people receive psychiatric medication from their general practitioner.  The stigma of going on an antidepressant has been lessened to such a degree that one out of nine people in the US now takes this class of drug.

In this context of the astronomical growth in drug based therapy, reformers are rightly calling for a dramatic reappraisal of how we are treating emotional distress.  Though many of us are working hard on creating alternatives, we often have to live within the parameters of the system that exists.  Someone who is on a multi-med cocktail cannot simply throw their drugs out the window and avoid all interaction with this system.  Slow and steady tapers off of psych drugs require interaction with doctors who provide those meds. Those who are experiencing mania, severe agitation, violent impulses and extreme states often end up going to a hospital setting even if they hate that system because there are no other alternatives.

We are left with the complexity of interacting with the mental health system while deeply resenting aspects of it that are damaging and destructive.   People with family members who have been civilly committed are forced to watch as that person’s rights are taken away.  Doctors can choose what medications to take and force that decision on that person while family members have to sit by and watch.  Family members may understand the short and long term health implications of those drugs but have no choice in the matter.  If they become angry, they may be turned away by the hospital.  If they plead their case to be cautious in drug dosages and cocktails, they may be branded as “enmeshed” and ”overly protective.”  So they are forced into a place of resentful cooperation.

Still others may find that though they have serious reservations about the system of mental health care in this country, they may still want to take psychiatric drugs.  Perhaps they feel that the drugs are damaging but they work for them to quell extreme and deeply uncomfortable states.  Some may want to use these drugs intermittently for crisis states.  Some may have family members who choose to take psychiatric drugs.  Others may feel it is too challenging and risky to come off the drugs they have been placed on.  All of these folks are confronting the complexity of desiring fundamental reform while still interacting with the system at large.

In this complicated process of working with the system while fighting for change, it is important to honor the gray area that many of us walk.  How do we manage these conflicting patterns while still staying true to the desire for reform and complete and separate alternatives?   Is purity required while fighting for change?

I work part time in an acute hospital setting and am confronted by the complexity of my role regularly.  I choose to work part time in a setting where people are coerced into taking strong and often damaging psychotropics.  But I also acknowledge that people, and generally the poorest and most disadvantaged, come there in a state of crisis, and I can offer deep and authentic support by listening and honoring their process.   I also try and create a setting where people can experience extreme states without forceful staff intervention, though I acknowledge that is not always possible, especially in cases of violence.   Through thousands of interactions with people in extreme states, the process of listening, offering food, drink and empathetic care almost always has helped diffuse potentially volatile situations.  There is a need for that type of care even in a larger system that is destructive.

I have been asked how I can let patients know that I don’t think what is happening to them is the best course of action.  This is tricky.  Sometimes when someone has gone cold turkey off their psychiatric drugs, a good course of action is to go back on them.  But I talk about the importance of tapering slowly off medications and gaining additional supports in the community.  The largest issue I see are people who are homeless and in severe poverty coming to the hospital and looking for help.  A hospital rarely provides that outside of some shelter vouchers.   Medications can seem like a cruel joke.  “Take this prozac and you’ll feel better.”   My worst conflict is seeing young people who are going through a first episode of psychosis come in to the hospital.  I think . . . man, I wish this guy could receive true support such as through an Open Dialogue program.  But instead they are started on psychotropics with little additional supports.  I watch as other nurses talk about a disease process, about the necessity of staying on meds and I wince.  We could do so much better and I feel like another one is being lost to the system.  I talk to the parents about EASA, about ways of working through psychosis outside of the traditional plan such as the Hearing Voices Network.  But I know my small efforts are overshadowed by the dominant paradigm.

Hopefully, in time, the messages of authors on MIA and voices like Robert Whitaker will come through, start to change how hospitals are run, lead to alternatives to hospitals. But for now, many of us walk in the gray world, knowing that large changes are needed, but forced to reckon with the system as it is.   There are multiple challenges to walking in these gray worlds.  Reformers  can blame themselves or judge others for being on psychiatric meds.  Some family members feel guilty, or like they are giving in if they don’t fight hospitals tooth and nail over the care of their kin.  People who work within the system can feel like they are being co-opted even if they do good work.  Purity is often an impossibility and yet the desire for real and radical change is essential.  My hope is to let go of some of that blame and guilt as we embrace deep and lasting change.

17 COMMENTS

  1. Jonathon, it is good to see your attention to your perspective upfront and as open to change as possible, given the rough conditions for remaining independent of mind and spirit.

    Let me just mention that Peter said at his recent Florida conference that working within the system perpetuates the harms as much as not and over-rules the good that very well-intentioned, well-informed people hope to do.

    I am happy to consider both ends of the spectrum as having validity, although that means dual conceptions of harm and benefit. For myself, the things that have counted as the last scrap of hope would not have been thought that, in most cases of hospitalization. And “hospitalization” always means not getting learned from, better informed, or encouraged to seek potential beyond the marginalized ones of your official class. No matter how syrupy the language, or sweet the approval of your attitude.

    That said, I believe we learn a lot by recording our reactions to things, our predictions and hopes, and the like. Still, no one in behavioral healthcare has gotten me more confident in myself than attorneys have; and except for a public defender “representing” me in the commitment phase, who stood around smiling while my wife lied outright, inventing some ridiculous story of something crazy that had no basis in fact or anything to do with me, all of my attorneys helped me.

    But in the field of clinical mental healthcare, not enough making up for the bad that comes with the good can ever really happen on the spot for enough lasting benefit to change the fortunes of very many victims of the care model that gets required in their life, or else–

    So you are right, if my sense of your personal conviction is clear, and contributing as an author and watching out for yourself so that you can manage to offer alternative forms of supportiveness seem like indispensable considerations for actually keeping yourself able to sustain your clients’ self-respecting and hopeful attitudes.

    I am pretty sure that these posts on MIA and other sites, all told, are saving lives and making some days worth it that would otherwise not be. I can’t begin to describe what magnitude of difference it is to have this and similar resources, and not just the pro-system popular junk. There is not point to learning it all in psychiatry, or in having it all taught to you, even by the most exemplary reformers, without a protest movement happening that suggests community alliance and common purpose.

    And notice how every true word is already co-opted by NAMI and the APA, whenever you start trying to address the most desperate needs. I admire the spirit of the undertaking from all groups involve, survivors and non-survivors equally. The day goes better because of the diversity and disagreements as much as from the educational news, you know…so how about MIA and portals in hospitals?

    • Right on, travailler-vous. I had my first and last psychotic episode and involuntary commitment at the age of fifty. That my episode and its content was treated as irrelevant was crazy— stark raving mad. The very fact that it was my first episode was significant to me, of course; but to them, all that mattered was my diagnosis and the cocktails they prescribed, and I refused, until I told them I’d take lithium, which I took for two days, to get out. I didn’t fill the prescription. I didn’t need it, and I never will.

      I understood perfectly why I cracked and the process of evaluating my psychosis myself was key to my transformation. I now have a very deep understanding of the trauma I’d been carrying around for thirty-five years now, and I respect it. I now know contentment and self-acceptance that I never thought was possible. Some pain is too big for words.

      It’s swimming upstream to claim one’s psychosis as one’s own valuable and meaningful experience, but it’s worth it.

      • It’s the best you can do in a situation: pretend you’re a good compliant patient and as soon as you’re out throw the drugs into the bin. That is of course if you’re lucky enough to be released quickly, before you develop drug dependency:/.

  2. “My hope is to let go of some of that blame and guilt as we embrace deep and lasting change.” I hope that’s the direction the industry is heading. But I met recently with a guy who does most the school counseling services for the school districts in the area I now live. He was very proud of the increased numbers of children they are servicing, and seemed quite defensive and embarrassed when we started discussing the actual efficacy and long run outcomes of the services that were being provided to the children.

    Is your industry really comprehending the inefficacy and harmful effects of your treatments as a whole yet? I met with this guy because I’m thinking of going back for a masters, and wanted some advise as to what area I might go into. I basically decided after meeting with this guy that going into public health, rather than into the trenches, might be a better way to help change the system.

    I’m not seeing the psychiatric industry really working for major reform, at least not in my area yet. It seems to still be about increasing business, even though the services provided are harmful to the patients. Repentance is required for change (and forgiveness), and denial does not fix the problems.

  3. Johnathon – I appreciate your honest post. As a fellow traveller in the gray lands, I cling to the hope of working for change from the inside. I understand the criticisms, but I can’t take responsibility for the whole industry – just 1 conversation, 1 training, 1 challenge to the dominant paradigm at a time.
    One day, with enough termites munching away – maybe the porch will collapse.

  4. Jonathon, Again, all this seems right on. The alternative minority presentations to the mainstream and active resistance by alternatives to getting co-opted by the mainstream are inevitably the most needed things.

    We can’t be sorry that good happens in evil places, or we are every bit as wrong as supporters of the status quo.

    What I hope to make a point about has to do with recognition by people in general that the hospital–at least as it exists now–exists as a set-up. There is not recognition or cognizance that it contradicts the promise of honoring patients’ rights or that patient means nothing medical, just something medicalized.

    Those are great examples that you describe–of good getting done in difficult circumstances where the parameters and criteria for helping are unclear and uncertain, frequently, and the consequences of the most good that can happen is much more of a spiritual than a practical judgment.

    I never saw anything like these beautiful things go down in a hospital space. Most things, but not all, were the polar opposite kind of double-bind thrown at people lik myself to alleviate some frustrations of the staff and not the inmates.

    However, in seeing the natural friendliness of some workers some times, there might have been reasons to get encouraged about “my case”. These meant uniquely good things to me, but the specific good little aspect or admirable quality of persons beyond refraining from overt abuse of their authority would not have been some intended thing. Not very many in the system have any ability to appreciate that anagnosia and doubting that your hospital term are not strictly identical.

    Also, on getting such pleasant and soul-saving and favorable things to happen more often… Everyone amidst hundreds and hundreds encountered at a time deny the connection between labeling and drugging and social control. Simultaneously, the create and partake in answering to the demand that the mental health procedures are compassionately administered as there is something bad in people’s heads that they need to be saved from by these interventions.

    Please don’t get me wrong, since it is more to the point that what you and others working in the system can do besides–over and above–criticizing the status quo that matters to me as an onlooker. I just would not want to associate with the prevailing mentality myself for extended periods. It has made recovery much harder, either as an event or a way of life.

    • travailler-vous,
      You’re post made me think about the numerous decent medical practitioners that went out of their way to save me. And, Jonathan, those who do go out of their way to save people caught in an insane, or if I may say, seemingly “bipolar” medical system, do make a difference. Thank you for fighting the system from within, it’s important work that you do … truly.

      And I would like to thank the “Dr. #22” in my unethical PCP’s office, who let me go off the Voltaren – because that resulted in my deluded neurologist weaning me off all his appalling psychotropics, except the lithium. And I’m so grateful for the wonderful nurse who followed my family to our next two PCP’s to protect us. I’m grateful that my next PCP weaned me off the lithium, despite refusing to confess to or explain the prior anticholinergic intoxication poisoning, but encouraged us to change insurance groups. I’m grateful the nurse told me not to hand over my son’s medical records. I’m grateful my next PCP said he didn’t agree with the misdiagnosis. I’m grateful NMH forgave a $5000 forced and unnecessary “physical” debt, which inappropriately resulted in my being shipped back to Dr. V R Kuchipudi’s partner in crime, Humaira Saiyed, based upon a fictitious “infection.” I’m grateful for the doctors and nurses who disagreed with Saiyed’s second medically unnecessary assessment and finally downgraded the misdiagnosis of my adverse effect to improper withdrawal from a “complex iatrogenic artifact” as “bipolar” to “adjustment disorder.”

      I’m sure that doesn’t make sense to anyone who hasn’t read my medical records. But my point is I dealt with the underbelly of the Chicagoland medical community, and have those decent medical practitioners fighting against the unethical medical practitioners who are covering up the “easily recognized iatrogenic artifacts,” with “complex iatrogenic artifacts,” then the “controversial iatrogenic artifacts” to thank for my life. And shame on those within the medical profession who believe covering up a “bad fix” on a broken bone, by defaming and poisoning innocent patients with psychiatric stigmatizations, is “proper medical care.”

      It strikes me there are truly good, and truly evil, people within today’s mainstream medical community (it’s a “bipolar” medical community). The medical “Wall of Silence” is making things worse for both patients, and the decent and ethical medical professionals. Psychiatry’s “lacking in validity” diagnoses are the problem. Medicine should be about valid science only.

  5. Hi Jonathon–Listen, I re-accessed your article to think over your extended treatment further, and you cannot have failed to be busy mulling it over yourself, obviously. (I also try noting significant survivor experience details for personal reasons, anyone venting…)

    Looking at the last comments with John Hogget, you start explicitly looking at the outlines of a framework for understanding how the big picture functions in long-term predictions or speculations of what the most hopeful and comprehensively distributed impact of a vibrant movement would be like.

    I wanted to add something for your consideration, although my knowledge is not extensive and not according to technical training. At any rate, in the more deservedly worthy of notice publications, to my sense of it, within a highly selective run of work by non-radical doctors and scientists, the questions and investigations needed to understand the efficacy of any long-term viable, paradigm that could perhaps exist. Of course, I mean suitable to true democracy and integrative views of wellbeing with the previous shrink cult of authority decried as evil.

    Anyway, whether there could be two distinct psychiatries as Szasz tried to promote, or any one similar discipline to an ideal version of a reformed psychiatry, works like the Oxford Handbook of Psychiatry (one of whose editors is much more credible and in earnest than the other, I think) and some trade journals devoted not to practice but to issues invloving the development of theories and research protocols–these bodies of work have to be considered in tandem to the important alternative tradition of debunking contemporary theory and practice, to anti-psychiatry.

    Not that the elite writers (ones who do take it that something consequential and real like an illness needs rigorous study that leaves people incapacitated, which medicine proper can’t explain)–not that they, ordinarily, address the realpolitik aspect of deprivations of status and rights as their own ideas would seem to demand–if they hoped to study the effects of their proposals showing up in observations in a natural way.

    The concern I have (or my own purpose affected in light of this range of concerns) regards the possible reality of humane care settings and respectful, honest consultations for a true majority of all voluntarily treated and/or voluntarily contracting patients, depending. But since I am done and decided on what works, and it is not this system, what causes my interest?

    Basically, because if there is a way to harvest, as from a corpse, anything that likely would prove valuable in a different mode of implementation and with ethical standards beyond reproach, we should try that in a revolution, too. Your understanding informed by your clinical experience seems transparently to accomodate this desirable aim.