Advance Statements and Taking Back the Power
As a sometimes conscript of the psychiatric system I have reflected on ways of staying in control at times of mental distress and have come to believe that an advance statement or directive has the potential to take back control. Especially if it is linked to a self management tool like the Wellness Recovery Action Plan (WRAP) and the Peer Support of people with lived experience. I think it makes sense for everyone who has experienced mental distress to consider this action, for as Dr Martin Luther King Jr said “there is power in numbers and there is power in unity”.
When I first heard of the advance statement my initial response was a sceptical one, that it would have no influence on what happened to me if I became mentally distressed and had to be hospitalised. My experience of voluntarily entering psychiatric wards (1978, 1984, 2002), in mental distress or diagnosed psychotic, has generally been of forced treatment and psychiatric drugs. In the most recent episode the old mental health act came into play, a 72 hour detention in a psychiatric hospital, a mixed gender acute ward where I felt very unsafe and didn’t want to stay. Force, in my experience, can be the threat of physical restraint and the restriction of freedom.
Therefore, for those of us who have been used to losing our personal power when mentally distressed, or having it taken away by compulsion or threat of force, it can be difficult to trust in any personal statement that may be overturned by psychiatrists, and which has no legal standing. The challenge then, as I see it, is in the writing of an advance statement that has power to take back control and to do this alongside a psychiatrist. Negotiating a plan of action that will ensure a preferred course of action and minimise the threat of compulsion or force.
In Scotland the Mental Welfare Commission has to be informed when advance statements are overridden, and can make enquiries as to whether it is a “genuine override” and if so how did it happen (see MWC annual monitoring report p 49,50). In 2011-12 there were 19 recorded cases of “actual overrides”, although the MWC doesn’t have a record of how many advance statements exist in Scotland. Of these 19 overrides only 2 cases were followed up by the MWC, the others were sorted out in meetings with a DMP (designated medical practitioner) or at a Mental Health Tribunal. I would be interested in any patient feedback but there seems to be no record of this. And my own experience, as a carer attending two MH Tribunals, was of the psychiatrist having the most power or voice, followed by the mental health officer, then the carer and the patient last of all. The tribunal members at these meetings I attended were from professional backgrounds, such as psychiatry, legal, social work.
A WRAP crisis plan can be useful in creating or inserting into an advance statement. I first heard about WRAP through attending a Scottish Recovery Network seminar in April 2006, Edinburgh, facilitated by Stephen Pocklington of the Copeland Center. Then in June 2008 I completed the WRAP Facilitator training, also delivered by Stephen, and proceeded to lead WRAP workshops in different Scottish areas, with another colleague co-facilitating. Our first event was in Fife, ‘An Introduction to WRAP‘ attended by 28 participants travelling from all over the country. I went on to deliver 2 day and 6 week courses.
from right: Shery, Chris, Karen Taylor, Ron Coleman, Jacquie Nicholson, at the sharp edge, September 2011, Fife, Scotland
In January 2008 I’d set up Peer Support Fife to promote the peer support model in Fife where I live and to keep informed about national and international developments. And began to deliver introductory workshops on PS locally and further afield, while also going out and about with WRAP. I’d got a copy of the book WRAP and Peer Support by Shery Mead and Mary Ellen Copeland, prior to doing the WRAP facilitator training, and last year was pleased to welcome Shery and Chris Hansen to Fife, as keynote speakers at our peer led crisis alternatives event ‘At the Sharp Edge‘.
Early 2008 I also discovered online the Pathways to Recovery strengths self help workbook from the University of Kansas, and ordered 20 copies, then the Pathways team sent another 20 free which I distributed to colleagues nationally. It was the beginning of a much appreciated supportive relationship and they posted WRAP materials, keeping in touch by Email [many thanks to Joanna from KU, a pen pal and a listening ear]. I used the strengths exercises in WRAP and PS training, and now in lecturing work with mental health nurses, from the survivor perspective, another great resource in reclaiming our stories and recovering our lives.
And so I have started to construct my own advance statement, it’s a work in progress that will take time to complete. I met with a psychiatrist after drawing up a draft copy, using a template from Alzheimer Scotland, and adapting it to suit my preferences. We had an interesting discussion around anti-psychotics, neuroleptics, compulsory treatment, having a single room, being treated with respect, home support rather than hospitalisation. We didn’t agree on everything and I hadn’t expected that we would. But it was a start to the job of creating a workable advance statement that will enable me, if in mental distress and finding myself in the psychiatric system, to take back the power.
So, do you see psychiatric advanced directives working or are they just window dressing? The reason I ask is that in the state where I live here in America we have psychiatric advanced directieves along with designated powers of attorney. The form is rather long and involved dealing with the kinds of drugs you’d be willing to take and those you wouldn’t; the psychiatrists you’d prefer and those you wouldn’t, things which help and things that dont’ when you’re in crisis. You keep a copy for yourself, a copy for your power of attorney person, and you give a copy to your psychiatrist if you have one. So, you go through all of this and set all this up and fill out the form and then comes the problem. Your advanced directive is only as good as the psychiatrist who takes your case. All they have to do is say that they don’t believe that what you’ve written up would be a help and it’s totally abrogated and denied. I’ve not met another person besides myself who has one and most people in the state don’t know that they exist. I suspect that it’s only as good as the psychiatrist you get and you and I both know what a throwing of the dice, a crap shoot we’d say here in America, that is.
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Stephen thanks for commenting.
I do believe that advance statements are more than window dressing and that, together, with other supports and safeguards, they can give power to the person in mental distress.
You make an important point about not knowing anyone else who has an advance directive. And this is one good reason why everyone should have one, for there is power and strength in numbers. And it can add weight to the movement for psychiatric system transformation, which I’m part of.
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Sounds like a great idea — even if we can’t guarantee the advance directive will be honored, it is well worth trying. If you can get a doctor to sign off on it, all the better. For one thing, people may be effectively allergic to certain medications (in that they’ve had serious adverse reactions) but those “allergies” are rarely taken seriously or documented. We have to assume that nothing we say about our own medical history will be listened to, especially if we’re admitted against our will.
The second thing is that if, god forbid, I were declared incompetent and a relative were to end up making decisions about my treatment, I would want to give that person as much backing as possible. Otherwise they may be guilt baited by the staff into endorsing all kinds of interventions because “if you care about your sister/mother/daughter” you will want her to have this.
I lost a good friend to a motorcycle accident last year — he lingered in a coma for a month before the decision was made to pull the high-tech life support. I realized what a gift he had given his wife when he wrote an advance directive saying he didn’t want his life artificially prolonged in such a state. She knew what he would have wanted of course, but having it in writing like that made a very tough decision doable.
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An interesting subject, Chrys. Coincidentally, I’m working on my advance directive. The Physician Orders for Life-Sustaining Treatment offers sample forms for many states in the United States at polst.com
I’ve specified “no psychiatric drugs under any conditions, by any route.”
In discussing this with my very enlightened internist, she suggested I include some kind of statement about the quality of life I wanted preserved at the end of life. There was an excellent article about this by Atul Gawande 2 years ago in the New Yorker http://www.newyorker.com/reporting/2010/08/02/100802fa_fact_gawande?currentPage=1
As long as we’re talking “nothing about us without us” — as you know I suffer from prolonged antidepressant withdrawal syndrome, which has left me hypersensitive to neuroactive medications, which makes any kind of drug treatment more risky for me.
How do you think I should include this in my advance directive? It’s likely that any doctor would think this was “all in my head” and give me drugs anyway.
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Hi Altostrata, thanks for commenting. Like you I really don’t want psychiatric drugs and this is the challenge. For psychiatry is built on this paradigm, that drugs are all. Because they have few if any other tools in their toolbox. Therefore if they were to relinquish drugs what power would they have?
For me in constructing an advance statement I decided to meet with the psychiatrist who treated my son recently and who covers the area where we live. I know him well although it hasn’t been an entirely positive relationship. But we were able to negotiate a tapering plan, getting my son off the haloperidol (haldol), from the 25mgs to zero, reducing it by 1-2mgs every 3wks, so that he was drug free after 5 months or so.
The tapering wasn’t easy but it was preferable to staying on the drug, the side effects of which were difficult – the restlessness, hyperactivity, muscle spasms etc. I got off psych drugs after psychotic episodes in 1978, 1984 and 2002. Chlorpromazine (thorazine)in the earlier episodes, it took me a year, then risperidone, effexor and lithium in 2002/3, this took a bit longer, about 18 months or so, because of the cocktail of drugs.
I was fortunate in that I had no after affects of coming off. The main challenge for me was resisting the psychiatrist telling me I had a lifelong mental illness, to which I said I didn’t believe or the DSM chart. So I had to take charge of my own mental health and taper the drugs without any support from psychiatry.
Since you have hypersensitivity to psych drugs then a medical doctor could write something in your advance directive to this effect. Even better if you worked on the statement with a psychiatrist and get them to sign it, as in verifying that alternatives to psych drugs are preferred and the reasons why. And to list alternative treatment that you would prefer eg talking therapies, peer support.
However I think that, with the present model of psychiatric treatment, it will be difficult to resist some sort of psych drug. And this is where I’m at in writing my advance statement. For the psychiatrist wants something in it to say that if I was in mental distress and wasn’t coming out of it after a few weeks then a psych drug of choice could be used. I’d prefer a benzo rather than an anti-psychotic. So this might be a compromise.
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Yes, I agree, having a psychiatric diagnosis forced on you with an invasive treatment is abhorrent, and that’s why I have specified “no psychiatric drugs under any condition.”
Now, in the advance directive we have in California, the premise is that one is unconscious and unable to communicate one’s wishes, as, for example, after a serious accident.
I’ve worked out my advance directive with my internist. I don’t give a fig what a psychiatrist might think of it.
I have no intention to seek psychiatric care or a psychiatric diagnosis. My hypersensitive condition arose from severe withdrawal syndrome. It did not exist prior to that.
I hope you can understand that while you did not personally suffer withdrawal symptoms, other people do; it’s not “all in their heads” nor a consequence of psychological addiction.
(Such theorizing about the experience of others is, in my opinion, contrary to “nothing about us without us.”)
Withdrawal syndrome is an adverse effect of psychiatric drugs which, like all adverse effects, does not affect everyone who takes them. Those who escape it are fortunate.
In my case, hypersensitivity and other neurological problems incurred by severe withdrawal syndrome, from which I have not completely recovered after 8 years, have become health hazards that I need to include somehow in my advance directive.
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Altostrata – I understand that other people experience different things from me and I can only talk about my own experience.
You are of course entitled to your opinions.
All the best with your advance directive.
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Understood, Chrys. By the way, I’m @survivingads on Twitter.
It’s one thing to speak about your own experience, it’s another to suggest that those who have withdrawal symptoms are delusional — denigrating the sanity of people whose experience differs from your own.
“Nothing about us without us” — right?
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Thanks Johanna, I’m with you on it being a good idea. Although it has taken me some time to get around to starting to write one, and it’ll be some more time before the psychiatrist and I arrive at a mutually acceptable finished article.
I really don’t want to take anti-psychotics, they don’t agree with me, but at the moment they are the drugs of choice for psychiatry. As in they think that only anti-psychotics can get a person out of a psychosis. For me the drug was too severe and brought me back down to earth with a big bump, causing depression. I’d rather have an alternative, if I ever was to go off the head again, whether psychotic or demented.
So we’ll have to create alternatives to the current paradigm, as in crisis support without drugs, peer led initiatives, respite houses, separating crises from the clinical and biomedical. Which just causes more problems by binding us up and in to the system, keeping everyone in a job and us in chemical straitjackets.
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I just can’t imagine the psychiatrists I had to deal with, taking any notice of any advanced statement. If they thought it needed, they would just have the advanced statement over-ruled by some court.If I try to put myself in a psychiatrist’s shoes, I can understand why they would. They think themselves as the “Experts” and that saving my life would be the most important thing.Their conscience would not allow them to follow my instructions if they thought they were putting my life at risk. It is a conundrum. I ask myself: what would I do in similar circumstances.
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In the US, advance directives would mostly be utilized in emergency situations or if you became incapable of communicating while hospitalized, for example, following surgery.
It wouldn’t be psychiatrists per se reading it, but emergency room and hospital personnel. Unless you carry it around with you, they wouldn’t see it until your designated “call in case of emergency” person was notified and produced it.
My internist suggested I put my medication restrictions and the location of my advance directive (her office has it) on the back of my driver’s license, since emergency room and hospital personnel generally look for identification when initiating treatment.
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In the state where I live there are advanced directives for medical issues (living wills) and psychiatric advanced directives. The hospital where I work pushes living wills but never mentions psychiatric advanced directives at all. I don’t think that most of the staff even know that there is such an animal running around out there. It’s a legal state document and requires that you choose a power of atterney, but it doesn’t have to be honored if the attending psychiatrist chooses to ignore it. So, depending on the psychiatrist who gets your case when you are brought into the system, she or he can ignore it with impunity and there will be no legal ramifications for them at all. So, it’s probably a pretty empty document. I’m the only one I know who even has one.
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Advanced Directives have no legal standing in Australia and in no state are you able to have relatives make decisions for you. Relatives are assumed to be unable to have the capacity to make the complex life altering decisions needed for those deemed mentally ill. How on earth they can have the capacity to turn off life support machines, agree to open heart surgery and the like is beyond me, but they cannot agree to what medications a person takes or whether they take them. They also argue that we are primarily a risk to other people and so it would not be fair to make a lay person make decisions about how to keep the community safe!!!!!!!!!!!!!!!!!
I could only dream of a day in which psychiatrists were required to practice as every other doctor did, with informed consent. But consent here, means agreeing to what they said. A classic and very true story:
A woman had had previous admissions. She was happy to take medication and did take it without any issues at all. She believed in the medical model. But she had had a massive allergice reaction to one medication and ended up in an intensive care unit for 2 weeks due to it. She was placed on another medication, stablised and sent home. A year or so later, she relapsed, while still complaint with medication. She was admitted as a voluntary patient and so had the right to make ALL treatment decisions. During the meeting with the psychaitrist on admittance it was suggested that she change medications. She said she was happy for that, providing it was not the one she had had an allergic reaction to 12 months previously. She was sent out onto the ward. Some 20 minutes later a nurse comes up to her with medication for her to take. She asks what it is, to be given the name of the drugs she was allergic to. She said I cannot take that as I am allergic to it. I said i would agree to take anything else. Security was called, she was stripped naked and placed in seclusion, made an involuntary patient for showing no insight into her condition and the medication was injected into her. Just in time she was found as her body was shutting down, she was rushed to intensive care and this time spent a month there!!
There ability make someone an involuntary patient at the drop of a hat, simply for saying I will not take one medication is beyond me.
I have recently watched a friend have a stroke and family be required to make decisions about what should happen to him. I can say that the advanced health directive he had about what should and should not be done, has made things much easier for them, as well as an appointed enduring power of medical attorney, so they knew exactly which person was going to make those decisions and they did not need to try to reach an agreement themselves. Our laws here are very clear that they do not apply to mental health treatment!! Anyone who cannot make informed decisions, is automatically an involuntary patient
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Thanks for commenting Belinda.
Although the advance statement in Scotland is not a legal document, it is a safeguard in the Scottish mental health act and should be taken into account. I have found recently that psychiatrists here are taking it into account. This is why I decided to write one and discuss the writing of it with a psychiatrist, so that I could put together a comprehensive statement. It goes into my medical notes, alongside notes written by professionals, thereby giving me a voice. Other safeguards under the new Scottish mental health act are independent advocacy and named person, the Mental Welfare Commission is there to protect the rights of people under the act and also mental health officers who are social workers.
I agree with you that advance statements in physical health are much more straightforward and likely to be followed more closely. The challenge in psychiatry/mental health is to have our voices listened to when we are mentally distressed or unwell, as I see it. And to make all the safeguards as safe as they can be. I think this is where activism and campaigning is useful, to highlight human rights issues and safeguards that aren’t safe.
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Although a signed statement might not have legal standing, perhaps leaving instructions for relatives might help them make decisions in the person’s best interest?
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That assumes relatives have the right to make such decisions. Within australia they are legally prevented from having any such role, and that is also the case in many other countries in the world.
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