Sunday, 19 January 2014

Marsha Linehan at UCC. "Real Change is Possible"

Last Friday I attended Marsha Linehan's lecture at University College, Cork.  Dr. Linehan is Professor of Psychology at the University of Washington, Seattle and is best known as the originator of Dialectical Behaviour Therapy. She has recently opened up about her own struggles and how they led her to develop the therapy, which is largely based on mindfulness, acceptance and the facilitation of  change.
Professor Marsha Linehan

DBT and me
It's more than ten years ago that I came across the work of Dr Linehan. I had been hospitalised in St. Patrick's in Dublin and had been held for five days in the euphemistically titled "Special Care Unit". I took the opportunity that the nurses' station was unmanned to have a peek at my file, that was lying on the counter. I got the shock of my life when I saw that the box marked "diagnosis" was marked "borderline personality disorder". At this stage I had been a mental health patient for eleven years and a psychiatric patient for six years. This was the first I'd heard tell of borderline personality disorder. I was vaguely aware that such a diagnosis existed but knew little else.

I came down to Cork that weekend and took myself to Q+2 and the medical section of the UCC's Boole library. I took a couple of books on borderline personality disorder and started to read up but it wasn;t until a second visit a couple of weeks later that I took out Linehan's book "Skills Training Manual for Borderline Personality Disorder".

This slim, A4 book, comprised mostly of photocopiable worksheet changed my life, as it has changed the life of thousands of others.  The change was twofold. On the one hand, for the first time ever, I felt some-one got me. Up until that time my diagnoses had been schizophrenia, anorexia or depression (although my last consultant in St. Patrick's did concede that he could find no evidence I suffered from any of these conditions). I had read books on all these conditions and while some of it fit, most of it didn't. Linehan's descriptions of the borderline patient struck a resounding chord. So did her discussion of the invalidating family. Looking back, I don't think I fit the prototype nearly as neatly as I thought I did, and of the three family types Linehan describes, I'd say mine fell mostly within the "Normal" parameters.

The essential was that here was some-one saying that the way I was acting was understandable and explicable, instead of merely deviant, mischievous or psychotic. And she offered hope that I could change. Change had never been a possibility within my treatment within the psychiatric system or from any counsellors I had attended, There was a polarity in their attitude towards me. On the one hand I was nuts, seriously ill and in need of constant medication and frequent hospitalisation. On the other, I was totally in control of myself and should just do what I was told and stop being such a nuisance. There was no future. There was no reality. The problem, as far as they were concerned, was my reluctance to obey, to concede and to comply.
DBT Venn diagram

Here, in DBT I found tools that I could use to make things better.  The whole thing was structured around four key skills : mindfulness, interpersonal effectiveness, emotional regulation and distress tolerance. I followed them as closely as I could. I made homework cards for myself and completed them, even though no-one ever corrected them. I photocopied all the worksheets and filled them out religiously. I copied sheets like "Cheerleading statements for Interpersonal Effectiveness" and pasted them on the inside of my bedroom door. I made myself do something daily from the Adult Pleasant Events Schedule.  I tried to practice willingness instead of wilfulness.

It's debatable how well I succeeded in all of this, given that I had no-one to guide me. It was hard but this was another benefit of the book; the book acknowledged that this was hard. Up until that time things I had been expected to do, or wanted to do, fell into two categories A) Easy, I should be able to do them, and B) Impossible, I should just give up. Living at home, staying away from certain people, giving up things I enjoyed, staying in hospital, being grateful: these were easy things. Going back to college, living independently, being medication-free, going back to the radio station where I had been a volunteer: these were impossible things that I should give up on.

DBT gave me a handle, a manual to do things that were hard but worth doing. The immediate impact on my quality of life was dramatic, although it would be some years before I actually moved out of home. Most of all was the inward comfort and confidence I gained from the knowledge that some-one, somewhere, even though it was half-way around the planet, understood my situation. Some-one knew that things other people found easy, I found hard, and that it was this difficulty and not some faulty wiring that made my life the mess it was.

I ordered Linehan's other book, "Cognitive-Behavioral Therapy of Borderline Personality" on-line and found even more comfort there. Take for example Linehan's debunking of the assumption that borderline behaviour is "manipulative."
"my own experience in working with suicidal borderline patients has been that the frequent interpretation of their suicidal behaviour as "manipulative" is a major source of invalidation and of being misunderstood. From their own point of view, suicidal behaviour is a reflection of serious and at times frantic suicide ideation and ambivalence over whether to continue life or not. Although the patients' communication of extreme ideas or enactment of extreme behaviours may be accompanied by the desire to be helped or rescued by the person s they are communicating with, this does not necessarily mean that they are acting in this manner in order to get help."
Somewhere else in the book (I can't find it but am sure it's there) is the line that has influenced me most of all. I'm paraphrasing because I can't find it but I'm fairly sure it goes something like. "All attempts by the patient to use "mental illness" to explain or justify her behaviour should be rejected".

UCC Lecture

So imagine my excitement when eleven years later I hear that Dr. Linehan's coming to UCC. I had to attend the morning session for "service users" rather than the afternoon session for mental health professionals. (I wonder if my consultant attended the afternoon session. He was the head consultant in the Cork hospital that I attended and at our last meeting in out-patients I told him I had found a new approach that was working. I said I was reading the work of Marsha Linehan. "Who's she?" he asked. "An American psychologist". "Hmmph".)

The title of Dr Linehan's lecture was "Real Change is Possible". Here is something that works. That takes people out of the psychiatric system. That builds lives worth saving. That if the HSE implemented properly would save hundreds of thousands of euro and potentially millions. In fact I will say millions as the saving involved in giving people effective treatment -  as opposed to prescriptions, out-patient appointments and infantilising OT - is threefold. Less is spent on inpatient stays, less of visits to A&E and less on medication.

DBT costs more in the outset. Patients receive psychotherapy from a trained professional and also attend meetings where they are coached in the key skills. Having both individual and group sessions facilitates one of the dialectics of the therapy's title; the dialectic between being flexible and responding to what's going on at the moment and being consistent and following protocol. DBT also has a specific and prescriptive response to suicidal behaviour protocol, which rarely involves locking the patient in the nearest secure psychiatric ward.

The difference between Linehan's approach and the Irish model is striking. She said at one point "I wouldn't let fear rule my treatment" when I remember fear being a major driver in policy. Fear of us killing ourselves, fear of their being sued if we killed ourselves, fear of our committing criminal or quasi-criminal acts, fear of us, fear that we'd escape, fear that we'd stop taking our medication or object to taking our medication.

"I Have the Right to be on Earth"

Linehan defines this concept of having a right to be on Earth as "essential validity" and said that affirming it is of major importance. Again, when I think back, even though my psychiatric team were very strong on the idea that killing myself was a bold, inconsiderate thing to think of doing, their behaviour towards me did nothing to instil the feeling that I had a right to be on Earth. They didn't recognise my right to be free, my right to wear clothes, my right to autonomy over my body, my right to fresh air and the feel of sun on my skin.

In the original "Skills Training Manual" Linehan writes that DBT is not a suicide prevention programme but a life-enhancement programme. This distinction is crucial and linked, I feel, to the concept of essential validity. Suicide prevention sounds vaguely coercive. It's about stopping some-one doing something, forcing them back into a life that may not be worth living. A life where you don't feel you have the right to be on Earth is no life.

A part of the lecture I found particularly interesting was when she discussed suicidal thoughts. Thinking about suicide is extremely common, far more common than parasuicide or completed suicide. "Thinking about suicide" is a behaviour in and of itself. It's a behaviour that is practiced because it is soothing. It is soothing because it presents an alternative reality and also because while you're thinking about suicide, you're not thinking about your problems.  Linehan compares the practice of thinking about suicide to a drug. I can relate to this; when things get bad I find myself thinking about suicide. Not that I'd do it, just that thinking about it brings relief.

I didn't ask a question at the lecture but if I had, it would have been this, and I'd appreciate your views on this in the comments. Can we apply the idea of thinking about suicide being a displacement activity to society as a whole? Take the recent RTE coverage of suicide, something I've referred to in a previous post. This coverage was embarrassingly simplistic and made several unwarranted assumptions: that all suicides are calculated choices, that undiagnosed mental illness is a major factor, that there is plentiful "help" available were people not too feckless to bother asking for it.  Take also the plethora of voluntary organisations with suicide in the title. The awful radio ads urging us to choose life, not suicide as though one were Tesco and the other Lidl.  We have anti-suicide cycles and anti-suicide bumper stickers and are told frequently that we need to "break the silence" and have lots of chats about suicide.

But I wonder; when we talk about suicide are we putting off talking about our problems? When we shake our heads and mutter about how awful it is that so many young people don't just ask for help, or think of their families, are we avoiding asking the hard questions. When we put the entire responsibility for reducing suicide onto the shoulders of GPs and the psychiatric system, are we abdicating our own responsibility? I lost count of the number of tweets I received over Christmas telling me to call the Samaritans. That could be because of the type of tweeter I tend to follow, but still. 

Hard questions might include what is wrong with our psychiatric system when involvement with it is a factor in so many suicides? Other questions might be how we look after children in their infancy. Are we too quick to refer troubled teens to the GP? Might it be a good idea to reverse the cuts to school guidance counsellors? Is anyone ever going to come out and categorically say that children should not have televisions or internet access in their bedrooms? Why are we still so slow to acknowledge the scale of child sexual abuse? Why does our economic system leave so many able-bodied, capable young people surplus to requirements?

Success

The fundamental goal of DBT is not to prevent suicide but to build a life worth living. When you consider how much is involved in this, how long it takes, the costs involved you see that by side-stepping "suicide prevention" DBT faces up to some of the problems and indirectly, saves lives. It isn't a panacea of course and has had very limited success with, for example, Post Traumatic Stress Disorder.  There may also be patients for whom it will never replace medication, but can still help them lead a life worth living.  Its major successes, apart from the original borderline personality application have been in Substance Abuse (87% success rate), major depression (68%) and eating disorders (64%). Interestingly, Linehan sees depression mostly as a behavioural issue, like taking drugs or being anorexic, rather than a mysterious fog that descends for no apparent reason.

A pilot project is currently running in Cork and there is hope that DBT will be rolled out across the country. I would hope that it is not customised too much to fit in with current (mostly dreadful) practice. I hope it will not be adopted in a lacklustre fashion on the grounds that "nothing works with these people". The fact that so many clinical trials have been conducted will hopefully bring the medical people on board. This could be a huge shift in psychiatric policy. Let's hope so.



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