Here in Lane County Oregon, USA, a group known as the Consumer Council, working closely with MindFreedom, has been pushing to put in place official guidelines which would hopefully change the behavior of mental health professionals. Two of the important things we are asking them to do is to quit misleading and disempowering people into believing that genetic and biological explanations of “mental illness” are fact, and to let people know they may eventually be able to live successfully without medication and that help is available to them in making that transition.

So far we have gotten the local mental health system to move forward with some vague and poorly explained guidelines, though even these have gotten the professionals stirred up as they find themselves being asked to take into account consumer concerns. What follows is a copy of an email about the concerns of the “treatment team” of the county mental health department, followed by my rebuttal. I thought it might be of interest to those of you who are pushing for change in your own mental health system.

I have changed the name of the mental health worker who wrote this email, as I didn’t ask her permission to post it here.

From: Brenda
Sent: Tuesday, September 30, 2008 9:04 AM
To: LEVINE Al; *LC H&HS 2411 MLK Mental Health
Subject: RE: attached position on consummer empowerment

Hi, Al,

Sorry for the late reply. I hope this is timely enough for consideration.

Some concerns were expressed at Wednesday Treatment Team about this, both by the LMPs and by the clinicians.

Of particular concern was the paragraph on the second page requiring that “clients be correctly informed about what is known about their mental health condition and providers do not misinform clients with explanations that are disempowering (genetics, chemical imbalance).”

The problem highlighted with this wording is the assumption that information about biological factors that contribute to mental health issues is disempowering. There was a feeling voiced that this particular wording stemmed from local political pressures rather being based on empirical information.

There was also concern stated about the phrase in the third paragraph that stated that “current treatment, including medications, may be necessary for a limited time.” (Italics mine.)

Clearly, it would be misleading for anyone to tell a client that medications may be necessary only for a limited time. For many clients, that is not the case.

Finally, There was a question of what “alternative treatment” means, and an objection to the phrase “dependence on psychiatric medications.”

There is way too much in this document that seems to make specific directives without clear definition of what that entails.

Personally, I believe LCMH needs to make a position statement on consumer empowerment. I just have my doubts that policy and practice (Expressed in the Heading “Consumer Empowerment Guidelines”) should be guided by what appears to be local political pressure rather than by a broader “Memorandum of Understanding” (or some such) of what client empowerment consists of, and which LCMH takes the time and effort to draft on its own, taking into consideration an array of current policy and practice, as well as local consumer input.

If the Consumer Council wishes to make a definitive statement such as the one above, they have every right to do so and, I believe, should be encouraged to do so. However, I do not think it serves anyone well for LCMH to adopt a hybridized version that may bind practitioners to wording that could have unintended consequences down the line.

I think much better wording could be used to express a commitment to increased consumer participation in treatment and a strengths-based recovery model. My concern is that the statement as is stands is focused less on real client empowerment than on limitations placed on what providers may and may not say. I do believe that any clinical guidelines coming from LCMH need to recognize the fact that medication is certainly not the only answer in treating any mental health condition. I just don’t think this is the way to express that reality.

I refer you to the very excellent SAMHSA statement (thanks, Gina!) that answers the question: “What is Recovery?” It has a much more encompassing–and philosophically acceptable–statement on consumer empowerment.

http://mentalhealth.samhsa.gov/publications/allpubs/sma05-4129/

Thanks,
Brenda

[then what follows is my response:]

It was very interesting to read the concerns that came out of the Wednesday treatment team meeting. I understand that many of the guidelines didn’t make much sense to you, that they seemed to unnecessarily limit how providers talk about things and they seemed to you to just be based on politics, and not on any reasoned and evidence based efforts to improve mental health care. I think the fact that you got this impression points out a definite weakness in the guidelines, and that has to do with the fact that they included inadequate explanation of the reasons for their existence.

The guidelines you saw did not come directly from the Consumer Council, though they did start as a result of recommendations for guidelines that were made there. I don’t know who put all the words together as you saw them (and they have been changed more since) but it now seems clear they don’t sufficiently explain why guidelines are necessary, and the basis for them. I think that rather than weakening them till they say less and less (which seems to be happening as they go through more committees and reviews) they need to be revised to clearly explain why they are vitally necessary to protect consumers against harm imposed by the mental health system. Let me attempt to explain here.

If a woman has a physical injury which a doctor has reason to know will leave her permanently unable to walk, and the doctor informs her that she will have to depend on a wheelchair to get around for the rest of her life, the doctor is being perfectly reasonable in telling her that. It may be depressing and initially demoralizing news to her, but it helps her face reality and prepare to get on with her life.

Now let’s consider an example where a woman has a physical injury which is more ambiguous. In the history of medical observation, most people with this sort of injury have not been able to walk again, but a sizable minority have been able to walk again. Let’s consider that in this example the doctor also tells the patient that she will have to depend on a wheelchair to get around for the rest of her life. Do you see the problem with that? If the woman believes her doctor, she will not take an interest in therapy that might get her walking and spending time outside of her wheelchair, and she may well end up permanently disabled, not because of her injury, but because of misinformation from her doctor. This would properly be classified as medical system imposed disability.

In the example above, perhaps the doctor was worried about nurturing hopes that might turn out false, or perhaps the doctor was worried that if she attempted to get out of the wheelchair and walk she would further injure herself and the doctor wanted to prevent any risk of this happening. It doesn’t really matter what the motivation of the doctor was: the patient has the right to hear that there is a possibility of recovery, and the right to pursue a course of rehabilitation therapy even if there is some risk of further injury in the course of the therapy. The doctor violated her informed consent by failing to give her critically important facts about possible treatment alternatives.

I used an example from physical medicine, but the same principles can be applied to a mental health problem. Brenda’s message stated that “There was also concern stated about the phrase in the third paragraph that stated that “current treatment, including medications, may be necessary for a limited time.” (Italics mine.) Clearly, it would be misleading for anyone to tell a client that medications may be necessary only for a limited time. For many clients, that is not the case.” Following the reasoning in Brenda’s message, the doctor in the physical injury example might have stated that he could not tell his patient that she might walk again and not have to depend on a wheelchair, because clearly for many of his patients with such injuries, they were not able to do that! I hope it is obvious to all of you that the doctor’s logic would be flawed. When we say a person “may” recover and walk again, or recover and no longer need medications, that is very different from saying the person “will” recover in that way. All we need to say that a person “may” recover is examples of some people with the given condition who do recover.

(One might also ask how many of this doctor’s patients weren’t able to walk again just because they had been misled by the doctor into not trying to recover. Predictions of failure can make failure more likely, which is why it is critical not to exaggerate the likelihood of failure, or especially critical not to make it appear inevitable.)

Some of you may feel that the above example does not apply, because you are sure that some of your clients definitely have no chance of getting off medications and doing well. I would challenge you though, to find empirical evidence that shows that mental health professionals are able to reliably predict who has no chance of making such a recovery. Harding did a long term study in Vermont of the people with the worst prognosis in psychiatry, people with a diagnosis of schizophrenia who had been hospitalized for years in the so-called “back wards.” She found that decades later, a third or more of these people were off medications, showing no symptoms of schizophrenia, and living lives that involved work and relationships. Similar studies elsewhere also show many recovering (though percentages vary: a similar study in Maine showed a lower rate of recovery, probably because Maine did not offer the same assistance in rehabilitation offered in Vermont.) It seems to me that when we do not objectively know who will recover and who will not, we should just say we don’t know, and let people know they have a chance.

Some of you may claim that you know certain people cannot ever live successfully off medication, because they have already tried a number of times and failed. But the fact that a person had even multiple relapses after quitting medications is still not proof that medications will always be necessary: it is also possible to find stories of people with such multiple relapses who eventually got off the medications successfully and then had decades or the rest of their lives living successfully without any medications. So again, where we don’t have the ability to make a reliable prediction, we would do better to back off, and admit that either outcome is possible, including the possibility that the need for medication may still be for just a limited time, even though there have already been multiple relapses. (Of course, if competent help is provided to a person attempting to get off, which includes not just medical oversight in withdrawing slowly but also development of a relapse prevention plan and assistance in shifting to alternative coping, then it is much more likely that a future attempt to get off the medication will succeed, or at least not end in disaster.)

The mental health system has traditionally been afraid to tell people they might eventually not need medications, because they worry this will make clients quit medications while they are in fact still necessary for that person. But when clients are told that they will need medications for the rest of their lives, or even subtly led to believe they will always need medications just by never discussing with them the possibility that they will recover to a point where they won’t need medications, then the effect is to misinform them in a way that is disempowering (which violates the principle of informed consent). We don’t have a right to do that, and it isn’t adequate mental health treatment. It is much more honest, and it works well, to simply discuss openly the danger of quitting medications abruptly while they are still perhaps needed, and to introduce instead the option of gradually reducing medications while shifting to other forms of coping, always knowing one can resume more medications if it is decided that is necessary. This allows facing the uncertainty squarely, in an honest and transparent manner, with the consumer having a choice about how much risk to take, without the professional attempting to make that choice for the consumer.

Another problem with telling people they will always need to stay on medications, when we really don’t know for sure this is true, has to do with the risks of the medications. If we tell 100 people that they will always have to stay on medications, when in reality 10 of those people could have gotten off successfully if they knew this was possible, then we are responsible for keeping those ten people on highly risky medications for no reason whatsoever. If some of these people die early because of the effects of the medications, then we are responsible for their deaths. We might argue that, if we told all 100 people that they might be able to get off medications then lots of people might try getting off them who can’t handle it and that would cause more trouble overall than would be caused by keeping some people on medications unnecessarily, etc. But my point is, we don’t have any ethical right to make these kinds of decisions for people, or to make the 10 who could get off suffer or even die unnecessarily because it is more convenient for us to not disclose the possibility that some can get off medications successfully.

Another issue: there is also a danger of mental health system imposed disability when people are convinced of explanations of their problem which have a greater sense of permanence and which are less likely to be controllable by the person. That is, when people are convinced that they are mentally ill because of their genes, or because there is some kind of problem in their brain which is strictly biological and has nothing to do with how they are choosing to react to things, such as a “chemical imbalance,” they naturally feel less able to do anything about recovery, other than perhaps depend on taking pills for the rest of one’s life (with usually only partial success at most.) If I have a brain tumor, I’m not going to believe I can get rid of the problems it causes by changing my thoughts and behavior. I think this should be obvious enough to not require research backing, but in fact, for schizophrenia at least, there is research that shows that genetic and strictly biological explanations are disempowering and increase stigma. One article that summarizes this research is attached. [Well it’s not attached in this post, but if you post a comment and request a copy I can email it to you at the address you registered with.]

I have a friend who was in the mental health system for years, where he received both many medications including neuroleptics, as well as electroshock. He described to me how he recovered by reconsidering all his ways of thinking and processing information, in a process that took years. He is now a college professor with national recognition for his work, and of course has not taken any medication for many years. He could not have done this had he believed that he would be inevitably mentally ill due to his genes or some strictly biological process in his brain. Fortunately, he was able to reject the misinformation he got from the mental health system, but I don’t think recovery should have to depend on consumers figuring out how to reject our misinformation: they shouldn’t be misinformed to start out with.

The truth is, we don’t know that any consumer we see has even a genetic predisposition toward a mental illness, much less a genetic “cause” because there are no genetic tests. (You may believe that the evidence that genetic differences contribute to mental illness is strong – some others differ with this – but one thing that definitely doesn’t exist is evidence to show that everyone with a particular mental illness has a genetic difference. For example, there is evidence that genetic differences create a predisposition to PTSD, but for any given person with PTSD, we cannot say that there is a particular genetic difference. There could be many other reasons why that particular person has a mental health problem.) We also don’t know that any consumer we see has any specific brain difference that is causing the illness: there is no brain test for mental illness specifically because there are no brain differences that reliably always show up in people with a given diagnosis and never in people without the diagnosis (nor are there any brain differences that even come close to meeting this criteria.) This means that genetic and biological explanations are simply unproven theories. (They are also rather dubious theories if one attempts to take them as a complete explanation, because no one has ever explained how a mental illness caused by genes or a biologically based brain difference could go away over time in the cases of people who get off medication and go on to live highly successful lives.)

What is essential to maximizing chances for recovery is that consumers be given explanations that suggest a role for the consumer in his or her own recovery. (These explanations do not need to be presented as fact, but just as theories or possibilities that offer hope.) For example, consumers can be told that their mental problem may result from a reaction to life events, reactions which over time they could learn to shift. This conveys the belief that complete recovery is possible and that the consumer has a role in it, which are beliefs that are cited by those who do recover as being essential in their journey.

Just a couple more issues: I was curious about the objection to the phrase “dependence on psychiatric medications.” Was this a purely political objection, or was it based on some kind of reasoning or evidence? It seems to me that from every objective criteria, this is an appropriate use of the term “dependence.” Dependence on something is not necessarily a bad thing: for example if I had an irreparable spinal cord injury, I would happily depend on a wheelchair, and I wouldn’t object to anyone calling it a “dependence.” Clearly, when a person cannot successfully get through a week or a month without taking a bunch of psychiatric medications, they are depending on them. The use of the word “dependence” might also bring up associations with dependence on other substances that have withdrawal effects, but even then this associations cannot be successfully argued to be misleading, because all classes of psychiatric medications have been shown to have withdrawal effects, or “discontinuation syndromes” or whatever you want to call them, at least in many people.

I agree that it would be helpful for the guidelines to go into more detail about what alternatives are and which ones might be accessed through LaneCare services. I think one of the best ways that LaneCare services can actually help is in having a therapist and/or case manager or peer support person guiding people in accessing things that are already available in the community for free, but which are ordinarily not accessed by people caught up in mental health problems. This includes everything from social groups, spirituality, family support, nature, building social support networks, free educational opportunities, exercise options, dietary and substance consumption changes, and other lifestyle changes. Of course, for a consumer to even see these as relevant, they often need to see the possibility of a broader understanding of mental health problems than that which they have often learned in the mental health system.

To sum all this up: I understand very much that the proposed guidelines would just seem an encumbrance on the everyday practice of mental health workers, if the justification for them is not well known. However, I hope I have made the case that there is a very strong justification for these guidelines, in that they contain suggestions which are necessary to avoid mental health system caused disability and even unnecessary death, to fully comply with the principle of informed consent, and to create the strongest possible assistance in recovery. It’s fine to have nice definitions of recovery, such as that found in the ten principles on the SAMHSA site, but it’s also important to have guidelines to insure that mental health workers don’t unnecessarily make such recovery less likely or impossible. I hope what I’ve written here makes apparent the reasons for these guidelines, and I hope in the future we will be able to include a better explanation for the guidelines within the guidelines themselves.

In many respects, these guidelines are a companion piece to the trauma guidelines, which also attempt to make mental health providers more aware of, and avoid, the possibility of mental health system imposed harm. I think we all have a lot to gain from such guidelines. They may temporarily make our work a little more difficult as we learn new things, but what we gain is increased competence in doing what we really care about, which is helping people. That’s a goal we can all agree on.

Ron Unger

Audio Dharma-

(for more talks like this, go here.)

recorded at the

Insight Retreat Center

eugenecash_anger

Insight Meditation Center began in 1986 as a small group meditating together once a week. Today, hundreds of people participate in events at the center throughout the week. Talks are shared with a world-wide audience through the online Audio Dharma program.

(Click the picture below- it makes a nice wallpaper)

Wei Yingwu

A POEM TO A TAOIST HERMIT
CHUANJIAO MOUNTAIN

My office has grown cold today;
And I suddenly think of my mountain friend
Gathering firewood down in the valley
Or boiling white stones for potatoes in his hut….
I wish I might take him a cup of wine
To cheer him through the evening storm;
But in fallen leaves that have heaped the bare slopes,
How should I ever find his footprints!

Bye for now!

-Rick