Readings in Humanistic Psychiatry
Key words: Medication nonadherence. Anosognosia. Self-discontinuation of psychiatric medications.Therapeutic relationships. Discontinuation strategies.
Abstract: Patients deciding to discontinue psychiatric medications without the participation of the person who prescribes them is an enormous problem throughout our increasingly overburdened mental health systems. This practice is a major contributor to symptomatic relapse and to rates of psychiatric hospitalizations, with dramatic consequences for both the individuals concerned and our society. This paper reviews some of the reasons why people choose to stop taking psychotropic medications and proposes new ways to conceptualize and address this widespread problem.
Anyone familiar with the care of people suffering from major mental illnesses is aware of the enormous impact on the lives of individuals- and on the mental health system at large- that results from the decision to stop taking psychiatric medications. Many, if not most, psychiatric hospital admissions occur in the setting of the self-discontinuation of whatever combination of antidepressants, antipsychotic and mood stabilizers has been prescribed to a person (1, 2). But little information is available to guide consumers who decide to see what life will be like without their “meds”.
In our increasingly “medical model” system of mental health care there are some basic assumptions that typically remain unquestioned: The job of the psychiatrist is to diagnose mental disorders and prescribe appropriate treatment in the form of medications. The patient’s job is to take these medications faithfully, usually for the rest of their lives. A whole army of case managers, social workers, nurses and even personnel from the court system is charged with ensuring “adherence” to the regimen of daily pills. Anyone who doesn’t take their medications regularly is putting themselves at risk for increased symptoms, hospitalization, and, oftentimes, involuntary treatment. Of course these widely-held assumptions don’t quite square with the clinical realities involved.
In reality, outpatient compliance rates for psychiatric medications run in the neighbourhood of fifty per cent (3). Many clients discontinue their medications at the first available opportunity. A large cohort of “revolving door” patients run up repeated psychiatric hospitalizations after stopping meds. People who have had dozens of such hospitalizations aren’t uncommon in the public mental health system. Anyone working in our state hospitals can tell you that discontinuing psychiatric medications is far and away the most common cause of admission. When the costs of the hospitalizations (usually over a thousand dollars per day), discarded medications, loss of housing, and missed outpatient appointments are totalled the financial burden to society that results from stopping medications is staggering.
Maybe it’s time to rethink those basic assumptions. The truth is that there are a lot of reasons why an individual might choose to stop taking those medications.
The aim of the present report is to review some of the common reasons that lead people to discontinue psychiatric medications. To look at some of the adverse outcomes that frequently follow a decision of this nature. To explain why stopping medications abruptly is usually doomed to fail from a neurophysiological perspective. And to suggest different models of therapeutic relationships in which patient’s wishes to decrease medications can be respected, with support and guidance provided regardless of whether we agree with their decision.
Why do people stop taking medications that are effective at reducing their uncomfortable symptoms?
Anosognosia , a neurologically-based inability to tell that one is ill, is very common among people with major mental disorders (4). For many people with schizophrenia, asking them to make the before-and-after comparisons required to conclude that they are suffering from a mental illness that can distort their reality is like asking a colour-blind person to see green. Their nervous systems are just not able to perform the necessary tasks. And if one doesn’t believe that they truly have a mental illness- and can’t recognize any benefits from treatment- why would they take medications for an illness that they don’t think they have?
We sometimes overlook the fact that we are asking people to take medications to reduce the statistical possibility of experiencing a relapse of symptoms. This is especially true in the treatment of Bipolar Disorder. The natural history of the illness is such that episodes of mania or depression might be spaced a year or more apart, with periods of “normal” mood and functioning in between. We prescribe mood stabilizers for life, with the hope that further manic or depressive episodes will be prevented or minimized. But taking a pill to reduce the chance of something bad happening just isn’t that attractive to a lot of people. The average person who is prescribed a mood stabilizer takes it for on the order of 57 days in this country (5).
Further weakening the possibility of close adherence to medications regimens are the dizzying combinations of medications that we now expect our clients to take. It’s now common to see anyone with a major mental disorder taking one or more antipsychotic medications, an antidepressant or two, an anticonvulsant drug, side effect pills, and something for sleep or anxiety- regardless of the disorder that they’re diagnosed with. Tales of patients with double-digit lists of psychiatric meds are increasingly common. Some pills are to be taken twice per day, others four times per day, and yet others only at bedtime. Of course, the irony here is that some of us who do the prescribing have never been able to faithfully complete a ten day course of a single antibiotic. We forget how difficult it is to remember that it’s time to take the pills-or to summon up the will to go to the medicine cabinet once again.
Side effect burdens of our medications are also commonly under-appreciated. Our new antipsychotic agents aren’t as likely to cause movement disorders as the older generation of them was but those tics and twitches have now been replaced by significant weight gain and type II diabetes (6). Sedation, fatigue, restlessness, and a dulling of the emotions are seen with many of our meds regardless of their class. Impaired sexual functioning is rarely inquired about or addressed. Subtle problems with mental efficiency or creativity can go unrecognized for years.
Compounding matters, especially here in Minnesota, is a belief that it’s always dangerous to mix our psychiatric medications with alcohol, marijuana, or other “recreational” drugs. So clients often stop taking psych meds because they feel that’s what they have to do if they’re going to drink, smoke, or whatever. Many people are surprised to learn that the main danger of combining alcohol or other substances of abuse with our prescription psychotropics is simply additive sedation (7). The message that using recreational drugs makes it even more important to take one’s psychiatric medications is one that many clients have never heard.
We forget that the medications that we psychiatrists typically prescribe take weeks to months for the benefits to develop- and that the person might not recognize those benefits once they arise. It’s human nature to want a medication to improve the way they’re feeling or thinking immediately- or at least within an hour or two. But that’s just not the way these powerful pills work. As one substance-abusing client so succinctly put it “I like the way my drugs make me feel a lot more than your’ s do”.
So when denial of illness, undesirable side effects, lack of appreciable benefits, confusing drug regimens, and myths about combining psychiatric medications are considered that low rate of medication adherence is pretty understandable. Throw in the expense of these pills, the occasional dogmatic “medical model” provider, and the stigma associated with taking these medications and it’s a wonder that anyone takes these pills regularly. If we’re going to be completely honest, most of us on the treating end of the relationships would want to try going without these medications too.
Using lessons from neuroscience
What can we do to improve this situation? We’re not going to be able to afford an even larger army of workers whose job is to improve medication adherence. And the truth is that, with limited exceptions involving antipsychotic medications, people retain the legal right to decide what medications they’re going to take. Strangely enough, the solution to this problem may involve teaching clients how to stop taking pills in a way that gives them the best chance of successfully accomplishing that goal.
Most clients have no idea that the manner in which they stop taking their psychiatric medications is essentially doomed to fail. They’ll decide to stop taking the whole list of them at once, without any input from their psychiatrist, and will typically attempt to hide this knowledge from their family. Even people who have tried this strategy and failed on multiple occasions will still go back to it, as though a different outcome might magically occur this time. What they don’t realize is that they’re neglecting some basic principles of neuroscience.
One thing that we’ve learned over the past decades is that our brains are highly resilient and responsive to our environments. If you take an antipsychotic medication that blocks dopamine receptors the brain will respond by building more dopamine receptors. Take a serotonin- boosting drug like Prozac and there will be a reduction in the receptors for serotonin. Our brains are always tuning themselves to what they see, trying to maintain an equilibrium (8). The practical significance of this is considerable.
When people stop a medication- or more typically a combination of them- abruptly they aren’t going immediately back to the way their brains were before the meds were started. In the case of the antipsychotic drugs, they’re now dealing with a nervous system that has a lot more receptors that are hungry for dopamine but now have nothing to calm them. Agitation, sleep problems, and irritability are common, with a recurrence of delusions or hallucinations often following close behind (9). The more medications that one takes the more complex and unpredictable are the changes that the brain must deal with when they’re discontinued. So if someone is truly serious about trying to successfully manage a mental illness without medications some common-sense principles should be utilized.
Being honest about experimentation
Psychiatric patients often complain that psychiatrists are “experimenting on them” but few appreciate the extent to which this is technically true. Anyone taking more than two psychiatric medications is almost certainly taking a combination of drugs that have never been studied together. Even decent two drug studies are pretty rare. And studies about how to best stop multiple medications are essentially non-existent. The medical model assumes that everyone will take their meds as prescribed. Our for-profit pharmaceutical companies have nothing to gain by investing in discontinuation trials. In a very real sense the decision to stop taking medications is an experiment, with little data to guide us. Using experimental principles only makes sense if we’re trying to maximize positive outcomes.
It’s pretty obvious when one thinks about it that minimizing the number of variables that are introduced into an experiment makes a lot of sense. If someone is taking a list of medications the best strategy is to reduce them one at a time. That way, if the individual feels better or worse they’ll have a pretty good idea what caused the change. Similarly, changes in each medication should be made gradually, giving the brain its best chance to successfully adapt to its new internal environment and allowing for a full appreciation of the effects of that change.
Starting or increasing the use of “recreational drugs” that may destabilize a person’s mental illness will, of course, reduce the chance of getting off of psychiatric medications without a return of symptoms. Adding that variable to the equation also makes cause-effect relationships harder to see clearly. So it’s best to answer the question of whether psychiatric meds can be successfully taken off before addressing the issue of whether one’s illness will tolerate the use of alcohol or street drugs.
Choosing the best time to embark on a medication reduction strategy is also important. Ideally, one should select a time when external stressors will be at a minimum (to the extent that any of us have such periods). Finding a time where negative consequences will be minimized if the outcome isn’t positive is important too. No one should make changes of this nature right before final exams or important job interviews.
Maximizing lifestyle factors that provide an optimal chance at recovery is just common sense as well. If one really wants to see what their best mental functioning without medications looks like they should do the things that we know improve mental functioning in any of us. Regular sleep-wake cycles (10). Healthy diets with supplements of omega III fatty acids and vitamins (11). Physical exercise (12, 13). Laughter (14). Mental challenges in whatever form makes sense for the individual. And socializing with other people- feeling that one is truly a part of the human community- is as therapeutic as anything that we can put into our bodies (15). If we want to think and feel at our best we must do everything that we can to improve the environments that we’re thinking and feeling in.
Any good experiment must have reliable ways to collect data. As has been mentioned, people with major mental disorders often have tremendous difficulty with accurately assessing changes within themselves. Even we supposedly “normal” folks have trouble in this area. Ask anyone you know how they’re feeling and thinking today compares with how they were doing 2 months ago. Our memory apparatus just doesn’t work that way very well. So, at a minimum, the individual who is stopping their medications should devise some sort of rating scale or logbook to track the changes that occur within them in response to the changes in medications. Serial videotaped interviews may help people to recognize gradual changes in themselves. And enlisting the help of other people who can provide trusted observations only makes sense. Observers who know the patient well will be best able to notice and describe changes. Ideally, the observer should have a lot of experience in noticing such changes and in understanding cause and effect relationships to the extent possible.
Directors of treatment within a “medical model” versus trusted consultants
It should be apparent that the one professional that’s likely to be best able to help the client who has decided to stop taking his medications is the very one that prescribed them in the first place. But involving psychiatrists in attempts to discontinue medications is thorny territory. We wouldn’t have prescribed them in the first place if we didn’t think they might help. A rejection of our medications can be experienced as a personal affront. Liability concerns can surface. There is always the chance that the outcome of the experiment will be a negative one. We’re usually a lot more comfortable with the idea of adding medications than reducing them. But the biggest problem with helping our patients to have their best chance at getting off of our medications is that it forces us to rethink our relationships with them.
Truly recognizing that our patients have the final decision about whether they take medications or not flies in the face of the medical model. We’re no longer the expert in charge of the person who should be following our instructions. Instead we’re offered the job of trusted consultant to a person of equal ranking. That’s quite a shift for some of us.
In reality our job as psychiatrists is awfully similar to that of optometrists. When you go to the eye doctor they put a series of lenses before your eyes and ask “which looks better, number one or two?” The patient has to decide which lens makes the world look better- and then has to decide whether to wear their glasses after they’ve left the office. We psychiatrists provide options like that to our patients too. But when asking whether the world looks better with or without any particular medication the answers are harder to come by. It may take weeks before data come in and a whole host of environmental variables might have intervened in the meantime. The patient himself might not notice any changes at all. A conviction that less medication is always better may bias the results. The need for an open, trusting, therapeutic relationship becomes crucial.
In psychiatric offices of the future there will, hopefully, be more attention to experimental principles when medications are added in the first place. Pills will be introduced gradually and there will be adequate time to determine the response to one change before a second is made. Methods for determining both response and side effects will be put in place. When an individual wants to try going off of medications the psychiatrist will explain as honestly as possible what he thinks will be the likely outcome of the experiment. If he believes that negative outcomes are likely he’ll share that information and help to prepare for the possibility. But the responsibility for the decision will rest with the patient. Once the patient makes that decision to stop medications –even against our better judgment- we’ll help them to try to do it in the safest way possible. We’ll try to make sure that each intervention provides as much useful information as possible. There will almost certainly be a majority of our clients who will end up finding out that they really do need to take a medication – or a simple combination of them- to feel and function at their best. But the resulting med list will be one that they can own.
If people can successfully get off of all psychiatric medications entirely, so much the better. But it’s the quality of life that they can achieve that’s important- not whether they take zero medications or two. And believing that their psychiatrist is truly rooting for them to succeed is important in the process too.
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