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The role of consumer empowerment in mental health recovery

Posted Oct 10 2009 12:00am

[Note:  The document below is just a part of the proposed consumer empowerment guidelines for Lane County .  I'm posting this separately here, because it is the part of the document that would be of most general interest.]

Recovery from many kinds of problems is affected by beliefs about the possibility of recovery.  Consider a hypothetical example of a person who has received an injury which affects the person’s ability to walk, but which is not necessarily permanently disabling if strong efforts are made to recover.  If the person is led by medical authorities to believe that the disability is permanent, efforts at rehabilitation will probably not be made, and the prediction may become a self fulfilling prophecy.  Since the disability at that point is a result of the inaccurate prediction rather than the injury itself, the disability becomes a medical system induced condition.

The mental health system faces the same kinds of issues.  In fact, none of the major mental health disorders have been shown to be reliably permanent, and no studies have shown mental health professionals being able to determine who will definitely have the disorder for the rest of their lives. [i]   For each disorder, at least a sizable minority are found to fully recover, without need of further medication or other mental health treatment. [ii]   Consumers who do recover typically credit others who helped them believe they could recover, and their own efforts at recovery, as essential parts of that recovery. [iii]

And yet, many consumers have been led to believe by the mental health system that they will always be “mentally ill” and that their need for treatment, in particular treatment by medication, will inevitably be lifelong as well. [iv]    (Sometimes they are misled by explicitly being told their mental illness will be lifelong, and sometimes they are misled by the fact that the possibility of eventually getting off medications or other treatment is never discussed by their provider.)  Being misled in this way naturally reduces efforts to recover, and this reduction in recovery efforts can reasonably be expected to lead to many cases of lifelong disability which would otherwise not occur.  And, since many mental health medications have serious hazards which can lead to health problems and early death [v] , it follows that this kind of misinformation will at times result in people dying from the effects of medications which in fact they no longer needed and might have stopped if they knew this was possible. 

In other words, when consumers are led to believe that there is less hope for recovery than that which is justified by the evidence, the mental health system risks actually inducing permanent disability, inducing physical health problems due to medications that may be unnecessary, and causing the actual death of the consumer.

Of course, consumers are also at risk if they stop a treatment which in fact they do continue to need.  But leading every individual in a group of consumers to believe that they will always need to stay on medications, in order to avoid the risk that many of them might quit medication prematurely, is a violation of informed consent.  Consumers have a right to be accurately informed, and if the data shows that some people with a given condition do recover and not need medication, then all consumers with that condition have a right to know that any need for medication might, as far as we know, end. 

One option that is available to mental health providers concerned that consumers might end a treatment such as medications prematurely is that of engaging in collaborative discussions with consumers about those risks.  Such discussions can cover topics such as the risks involved in quitting medications, versus the risks involved in possibly staying on the medications when they may no longer be necessary or useful.  In addition, possible ways of cautiously weaning off medications and gradually replacing medications with other coping strategies (with the option of turning around and increasing dosage if necessary) can be discussed, so that choices are not presented in all or nothing terms.

Role of explanations about causes of mental and emotional problems:

In addition to the problem of consumers being simply told that their problem will be lifelong is the problem of consumers being given inaccurate information which carries an implication, intended or not, that the problem will be lifelong.  In particular, explanations of mental disorders which exaggerate evidence for genetic or biological (some would say “medical”) causes induce expectations that problems will be lifelong, since few consumers will imagine that they will be able to alter their genes or to permanently “fix” structural or biochemical defects in the brain.  In regards to schizophrenia for example, biological or medical explanations have been found to increase a sense of helplessness in consumers who have been led to believe them.  They also increase stigma:  when family, community members, and mental health workers become convinced of such beliefs, then perceptions of dangerousness and desire for social distance from the diagnosed person increases. [vi]

In actuality, the fact that a consumer has been diagnosed with a particular disorder does not allow a professional to reliably predict that this consumer has any particular genetic, biological, or structural brain difference, or “biochemical imbalance” compared to the average person, since no such differences have ever been found in every member of groups diagnosed with such disorders.  Given the absence of such evidence, no consumer should be led to believe that he or she definitely has any particular genetic or biological difference, unless a specific test has been performed finding such a difference for that particular consumer.

Many proposed explanations for mental disorders do provide hope for recovery.  These explanations empower consumers by focusing on things they have the power to do something about:  lifestyles can be modified, mistaken beliefs and interpretations can be changed, past traumas can be put in context through therapy and other exercises, bad habits can be replaced with positive habits, stress can be handled more successfully, diet can be improved, deficiencies in social support can be corrected, destructive use of substances can be curtailed, etc.  Emphasizing the possible role of such factors, without exaggerating evidence for them, can nurture realistic hope for recovery and increase its probability. 

In addition, when possible genetic or biological causes for mental disorders are discussed, possible negative impacts can be softened by including additional information.  For example, even in the case of a genetic vulnerability, people can adopt lifestyle modifications that reduce the vulnerability.  Just as a person genetically predisposed to sunburn might eliminate sunburn by limiting sun exposure, a person more prone to psychosis when stressed and sleepless might learn to manage stress better and take stronger steps to insure adequate sleep.  A person concerned about a possible biochemical differences related to mental health difficulties might benefit from learning about the close relationship between biochemistry and stress [vii] , and how psychological and lifestyle modifications affecting stress levels might help correct any possible biochemical problems.  A person concerned about possible brain differences sometimes associated with his or her disorder might benefit from learning about how people often regain function even after definite brain injury, and how positive activities (such as meditation and therapy) have been shown to create actual physical and even structural positive changes in the brain. [viii]  

In general, caution should be used whenever presenting theories about possible physical causes for mental and emotional events.  All thoughts, emotions, intentions and perceptions can be seen as associated with chemical dynamics in the brain and central nervous system.  The transmission of electrical charges between neurons in the brain is a chemical process.  But there is no evidence and no reason to believe that the chemical dynamics are causal or primary.  It is just as likely that the psychological dynamics – thoughts, emotions, intentions and perceptions – are causal and primary.  (For example, when we move our arm, the muscle contractions are the result of chemical dynamics in the muscle, but those typically happen because of our decision to move the arm, not because of an independently occurring “chemical imbalance.”)  So, even when scans of the brain find that persons with certain diagnoses have similar patterns of energy or structure in the brain, that doesn’t mean that those patterns were the cause of the symptoms that lead persons to be diagnosed.  It is just as likely that those patterns were caused by psychological variables – how people are reacting to their life situations with thoughts, emotions, intentions and other behavior.  When both providers and consumers understand this key fact, they are less likely to believe that consumers are passive victims of a physical process that is out of their control.

Some providers have reported worrying that if consumers are given explanations which imply that their mental and emotional problems were caused by anything other than a genetic and/or biological inevitability, then the consumers will feel morally blamed for being “ill.”  In addition, it is worried that if consumers are told that full recovery is a possibility, then they will feel bad about themselves for not having yet made such a recovery, or will be pressured to meet some definition of “full” recovery, rather than focus on their own life goals.  However, a middle ground does exist between blaming people for being ill, and attempting to exonerate them from blame by defining them as being helpless to change.  Providers can learn to use middle ground approaches that emphasize both acceptance of one’s past and of oneself as one is, and the possibility of learning skills for change.  Such approaches provide hope and empowerment while also avoiding any undue sense of blame and/or pressure to conform to a fixed version of recovery. [ix]   They are also consistent with the belief that “it is possible to have a meaningful life, in spite of disability, all along the path of recovery and whether or not full recovery occurs.[x]

Role of information about medications and other treatments:

Consumers can be misled and disempowered by a variety of kinds of misinformation about mental health treatments. 

When the likelihood of success for a treatment is exaggerated, consumers may place undue faith in that treatment and neglect other options.  (For example, consumers are sometimes led to believe that certain medications will restore a “biochemical balance” in their brain, even though research shows that the medication commonly induces what is in many ways an abnormal biochemical condition in the brain, such as the dopamine blockade induced by the neuroleptics. [xi]

When consumers are led to believe that a “symptom” or problem they are experiencing can only be treated with one particular method, whether that be medication or therapy or whatever else, and when they are not informed that other alternative treatments and/or lifestyle changes have also been shown to often reduce problems, then they are effectively denied access to other forms of treatment or coping which may be more helpful or tolerable for them. 

When consumers are not informed about possible harmful side effects, they may go ahead with using a medication they would otherwise avoid, and when side effects do occur, they may blame something else and continue to suffer unnecessarily from those side effects.  Or, they may be unaware of the possibility of long term damage being caused by the medication until it is perhaps too late to do anything about it. [xii]

When consumers are not informed about withdrawal or discontinuation effects frequently associated with a particular treatment [xiii] , they may interpret difficulties that occur for them upon attempted discontinuation as evidence that continued treatment is necessary, when in fact this may not be true for them.

In addition, when consumers have been led to depend on one given treatment, they may become inadvertently trapped on that treatment if help in shifting to alternative treatments and coping tools is unavailable.  Lack of choice can mean feeling “stuck” with a particular treatment option such as medications even when that treatment is also resulting in destructive “side effects.”  However, when assistance is provided in making a slow and cautious withdrawal, in developing and implementing a relapse prevention plan [xiv] , and in finding acceptable alternative treatments and coping practices to insure mental and emotional stability, then consumers are more likely to find they can function with significantly less or even no medications, if that is their choice.

Addressing risk, uncertainty and complexity:

One reason sometimes given for the denial of consumer choice or resistance to consumer choice within the mental health system has been an assumption that mental health treatment decisions are relatively straightforward, and that “noncompliance” with professional recommendations can easily be attributed to “the illness.” [xv]   However, increased awareness of the complexity of mental health decisions reveals reasons to give wider respect for individual consumer choice within mental health.

For example, some of the quite valid reasons consumers may choose to reduce or eventually get off medications are outlined below:

The medications prescribed may not be effective for the particular consumer, or may even be making the problem worse.  Psychiatric medications are typically found to work only for a percentage of the people who take them [xvi] , and can often have effects opposite from those intended [xvii] .

  • The medications may have worked to reduce “symptoms” or problems for a few weeks or months but aren’t helping long term.  Psychiatric medications have typically been proven in research to reduce “symptoms” in the “average” person with a given diagnosis over a period of a few weeks or months, but have not been proven to be helpful in the long term, and some types of medication may even result in a worse long term outcome for the average person. [xviii]
  • Side effects, either subjective (how it makes the consumer feel) or objective (health and performance effects) may not be acceptable to the consumer.  It should be noted that medical recommendations are not based on an “objective” weighing of benefits of medications versus costs in terms of “side effects”:  there actually is no agreed objective method for weighing the subjective and objective negative “side effects” of the medications versus the possible benefits.  Given the lack of an objective standard, and the individual variation in who experiences what effects, it makes sense to involve consumer in weighing the costs versus benefits as they apply to that consumer.
  • While the consumer may find that the medication handles “symptoms” effectively, that consumer may want the opportunity to practice or try out a shift to self management of mental and emotional issues, in order to avoid long term reliance on medications and/or to enhance personal growth.
  • The consumer may have a different “guess” about long term unknowns, compared to that of the provider.  We know relatively little about the brain, and so there are many questions about long term consequences of chemical intervention that remain unanswered.  Given the uncertainty, the provider cannot “know” that the provider’s recommendation is correct and the consumer is wrong: as it is the consumer’s life and the consumer’s brain, the consumer’s choice should be honored.

Given the complexity of the issues, it is apparent that medical professionals alone are incapable of making decisions likely to meet the needs of all consumers.  Consumers, on the other hand, are unlikely to understand choices around medications without help from medical providers.  This suggests that collaborative relationships, where consumers are fully informed and their opinions are respected, are most likely to result in satisfaction and positive outcomes.

A final reason often given for denying or minimizing choice by consumers has been the attempt to avoid the risk that harmful choices will be made. 

When people have a mental health crisis, they may find they cannot rely on themselves, and must rely on assistance from sources such as hospitals, case managers, and medications in order to cope.  The process of shifting away from such assistance, and learning to rely on oneself and support from the community rather than the mental health system, does involve risks of various kinds.  However, too great avoidance of such risks creates other sorts of risks, such as the risk of unnecessary institutionalization and denial of autonomy, and the risk of physical and mental harm due to medications which may turn out to be no longer necessary, or perhaps never were necessary [xix] .  (Risks created by excess avoidance of other kinds of risk have been called “risky risk avoidance” by psychiatrist Sandra Bloom.)  Given the complexity involved in the existence of these two kinds of risk, and the impossibility of knowing in advance who will be successful in phasing out mental health treatment, it is suggested that providers acknowledge and accurately communicate their uncertainty and develop treatment plans which address risks of both kinds in collaboration with accurately informed consumers.

It should be recognized that recovery always involves risk, although the risks can often be reduced by taking small steps rather than large leaps. 

In addition, it should be recognized that recovery is always complex.  There are at least three important sides to recovery:  recovery of a valued social and life role, recovery from disability (no longer needing special accommodation due to having or being perceived as having an “illness”), and recovery in the sense of no longer requiring any sort of treatment.  At any one time, a consumer may value one of these aspects of recovery more than another, and might chose not to take risks in one area so as to avoid threat to another side of his or her recovery.  At another time, that consumer may decide that taking that same risk makes sense in order to move forward with a different aspect of recovery previously neglected.  The role of the mental health worker is to support the consumer in making thoughtful choices about risk, not to make the choices for the consumer.

Recovery is tricky when the problem is imaginary:

When people are diagnosed with a mental health problem, it is usually because the person is experiencing some combination of seeing problems where there aren’t any, and seeing as solutions, things that actually make things worse.  But consumers have noticed that the mental health system all too frequently does the same thing.  For example, consumer “differences” which could actually be accepted without damage to overall health are sometimes labeled as pathology, and/or consumers are sometimes still seen as “ill” even after any difficulties have been overcome.  Many consumers report that recovering from stigma, or the perception of others that something is wrong with them, is much more difficult than recovering from any actual problems.  And consumers at times observe that mental health treatments are making them worse, while their providers appear to show no “insight” into the fact that this is happening. 

When both consumers and providers acknowledge they are human and prone to mistakes, collaborative discussions can emerge which can sort through the difficulties described above. 

Listening to the voice of consumers at each meeting:

The first level on which consumer participation and empowerment can be encouraged is in each meeting with a mental health provider.  A good deal of research shows that when providers ask consumers about the quality of the relationship with the provider and about experienced outcomes from the consumer’s perspective, the effectiveness of the treatment is substantially increased. [xx]   This helps treatment be tailored to the individual consumer and to that consumer’s choices, rather than simply be designed to meet the needs of the “average” person with a given diagnosis.

The role of consumers in helping each other:

Just as consumers can frequently help themselves move toward recovery from mental health problems, research has shown that they can also help each other.  Furthermore, such helping is beneficial not just to the recipient of the help, but even more so to the helper.  Because peer support is naturally mutual, and because self help mutual support networks are potentially much longer lasting than those which are mostly one way (and can usually be arranged more economically) it makes sense for the mental health system to facilitate the creation of peer support networks. [xxi]

Peer specialist positions, where one “peer” who is perhaps further along the road to recovery is paid to help others who may not be so far along, are also helpful at times, especially in reaching out to people who may not be able to access or feel supported by less focused peer support networks.

The role of consumers in assisting the mental health system as a whole:

While the mental health system purports to have as its purpose helping people diagnosed with mental disorders, its activities are not infrequently experienced as not helpful or as less helpful than they could be.  Compounding this problem has been the fact that traditionally the voices of mental health consumers have not been heard, and so the mental health system has tended to not learn from its mistakes, as it does not receive the feedback necessary to improve its performance.  In addition, when consumers feel they have no voice in the system, they are more likely to feel alienated from it, resulting in reduced engagement and reduced treatment effectiveness. 

At times, efforts have been made to include the “consumer voice” by picking one or two consumers to serve on various committees or boards.  While this effort is worthy, there is some risk that these consumers may not be able to convey the concerns of many other consumers who are not present.  As an alternative, meetings open to all interested consumers can be organized.  A combination approach may combine the best of both strategies, by including both regular meetings open to all consumers, as well as utilizing specific consumer representatives who attend both the meetings open to all consumers (where they learn about the concerns of consumers other than themselves) and the more specific committees and boards with mixed membership where they represent the consumer viewpoint.

[i] Schizophrenia is the major mental illness with the worst prognosis, and yet, recovery is common, not rare, even in this group.   See the review of studies in “Beyond dementia praecox: findings from long-term follow-up studies of schizophrenia” by Joseph Calabrese and Patrick Corrigan, published in “Recovery in Mental Illness: Broadening Our Understanding of Wellness” edited by Ruth O. Ralph and Patrick W. Corrigan in 2005 for the American Psychological Association.

  [ii] While it is commonly assumed that medications will facilitate recovery, this assumption clashes with evidence that those who do show recovery are more often off medications.  One study found recovery rates to be eight times higher among those who had gotten off medications for schizophrenia:  see Harrow, M. and T.H. Jobe, Factors involved in outcome and recovery in schizophrenia patients not on antipsychotic medications: a 15-year multifollow-up study. J Nerv Ment Dis, 2007. 195(5): p. 406-1.  See also “Harding, C.M. and J.H. Zahniser, Empirical correction of seven myths about schizophrenia with implications for treatment. Acta Psychiatr Scand Suppl, 1994. 384: p. 140-6.”  This article can also be found on the web at http://psychrights.org/research/Digest/Chronicity/myths.pdf

  And while it is commonly believed that medication has improved outcomes for people diagnosed with bipolar disorder, it is interesting to note that rates of social recovery have been found to be possibly reduced since medications were introduced, and rates of hospitalization to have apparently increased.  See Dorrer, N. (2006) Evidence of Recovery: The ‘Ups’ and ‘Downs’ of Longitudinal Outcome Studies. SRN Discussion Paper Series. Report No.4. Glasgow, Scottish Recovery Network. Available at http://www.scottishrecovery.net/content/mediaassets/doc/SRN%20Discussion%20Paper%204%20Outcomes.pdf

Also “Harris, M., et al., The impact of mood stabilizers on bipolar disorder: the 1890s and 1990s compared. Hist Psychiatry, 2005. 16(Pt 4 (no 64)): p. 423-34.”

  [iii] “Having some hope is crucial to recovery; none of us would strive if we believed it a futile effort. . .” That is a quote included in “Mental Health: A Report of the Surgeon General; Overview of Recovery” available at http://www.surgeongeneral.gov/library/mentalhealth/chapter2/sec10.html

  [iv] “Consumer-Directed Transformation to a Recovery-Based Mental Health System” available at http://mentalhealth.samhsa.gov/publications/allpubs/NMH05-0193/default.asp

 

[v] For a review of the role of medications in causing people in the public mental health system to die 25 years earlier than average, see “Morbidity and Mortality in People with Serious Mental Illness” put together by the National Association of State Mental Health Program Directors (NASMHPD) Medical Directors Council, and available at http://www.nasmhpd.org/general_files/publications/med_directors_pubs/Technical%20Report%20on%20Morbidity%20and%20Mortaility%20-%20Final%2011-06.pdf

 Also see “Saha, S., D. Chant, and J. McGrath, A systematic review of mortality in schizophrenia: is the differential mortality gap worsening over time? Arch Gen Psychiatry, 2007. 64(10): p. 1123-31.”

  [vi] Read, J., et al., Prejudice and schizophrenia: a review of the ‘mental illness is an illness like any other’ approach. Acta Psychiatr Scand, 2006. 114(5): p. 303-18.

  [vii] As just one example of current understanding, see Richard Lewine (2005-“A contemporary appraisal of the role of stress in schizophrenia” in “Handbook of Stress and the Brain: Part 2: Integrative and Clinical Aspects” edited by T. Steckler, N.H. Kalin & J.M.H.M. Reul in 2005 for Elsevier)

  [viii] The Harvard Mahoney Neuroscience Newsletter Fall 2006 Vol 12 No 3, has information related to meditation: r http://www.med.harvard.edu/publications/On_The_Brain/Volume12/OTB_Vol12No3_Fall06.pdf

For more on therapy, see Schwartz, Jeffrey M. The Mind & The Brain: Neuroplasticity and the power of mental force. Harper Collins Publishing: New York, 2002 as one possible source.  Also “ Do psychotherapies produce neurobiological effects?   By Kumari, Veena, Acta Neuropsychiatrica. Vol 18(2), Apr 2006, 61-70.”

  [ix] Examples of psychological approaches that emphasize both acceptance and change include most of those that have a “mindfulness” component, such as Acceptance and Commitment Therapy (ACT), and Dialectical Behavioral Therapy (DBT).

  [x] Quote taken from http://www.familymentalhealthrecovery.org/conference/handouts/Workshop%208/WINDHORSEGUIDEFORFAMILIES.pdf

  [xi] Hyman, S.E. and E.J. Nestler, Initiation and adaptation: a paradigm for understanding psychotropic drug action. Am J Psychiatry, 1996. 153(2): p. 151-62.  This article describes how the fundamental mechanisms of action are similar between drugs of abuse and psychiatric medications.  Also see: Jacobs, B . (1991) . Serotonin and behavior: Emphasis on motor control . Journal of Clinical Psychiatry, 52 (12 Suppl .), 151-162.  The author describes how SSRI’s “alter the level of synaptic transmission beyond the physiologic range achieved under (normal) environmental/biological conditions.”

  [xii] An example of risk of long term damage of which a consumer may be unaware is that of brain shrinkage caused by neuroleptic medication (also called antipsychotics).  This hazard was recently discussed in the New York Times based on research in humans; see http://www.nytimes.com/2008/09/16/health/research/16conv.html?_r=1&ei=5070&emc=eta1

The same effect has also been found in animal research:  see “Effect of chronic exposure to antipsychotic medication on cell numbers in the parietal cortex of macaque monkeys; Konopaske, G.T. et al, Neuropsychopharmacology. Vol 32(6) Jun 2007, 1216-1223.”  A summary of much of the evidence, combined with ideas about how complete informed consent and use of neuroleptics might coexist in clinical practice, can be found in “Aderhold, V. and P. Stastny, Full Disclosure: Toward a Participatory and Risk-Limiting Approach to Neuroleptic Drugs. ETHICAL HUMAN PSYCHOLOGY AND PSYCHIATRY, 2007. 9(1): p. 35-61.”  This article is also available on the web at http://psychrights.org/Research/Digest/NLPs/EHPPAderholdandStastnyonNeuroleptics.pdf

  [xiii] Taylor, D., S. Stewart, and A. Connolly, Antidepressant withdrawal symptoms-telephone calls to a national medication helpline. J Affect Disord, 2006. 95(1-3): p. 129-33 is an article that discusses how education about withdrawal effects can dramatically increase consumer awareness of such effects when they occur. 

Medications in all of the major classes of psychiatriatric medications have important withdrawal effects, which can be reduced somewhat by slowly tapering off the medication. 

For a review of some of the evidence related to neuroleptics, see “Does antipsychotic withdrawal provoke psychosis? Review of the literature on rapid onset psychosis (supersensitivity psychosis) and withdrawal-related relapse. Moncrieff, J. Acta Psychiatrica Scandinavica. Vol 114(1), Jul 2006, 3-13”.  See also a review of 66 studies, which found that the risk of relapse was three times greater when withdrawal was abrupt:  “Gilbert, P.L., et al., Neuroleptic withdrawal in schizophrenic patients. A review of the literature. Arch Gen Psychiatry, 1995. 52(3): p. 173-88”.

For evidence of problems with abrupt discontinuation of lithium, see “Baldessarini, R.J. and L. Tondo, Recurrence risk in bipolar manic-depressive disorders after discontinuing lithium maintenance treatment: an overview. Clin Drug Investig, 1998. 15(4): p. 337-51.”

 Another major class of psychiatric medications, the benzodiazepines, have withdrawal reactions that can even be life threatening:  one review of those is at http://en.wikipedia.org/wiki/Benzodiazepine_withdrawal

  [xiv] One study found that the rate of relapse for people who had a planned discontinuation of their medication that included an active relapse prevention plan had only a 4% greater rate of relapses than those who stayed on medications:  see Gaebel, W., et al., First vs multiple episode schizophrenia: two-year outcome of intermittent and maintenance medication strategies. Schizophr Res, 2002. 53(1-2): p. 145-59

  [xv] While some consumers may be rejecting treatment that is offered due to “lack of insight” caused by their mental and emotional problems, it is also possible that other consumers are accepting treatment which is actually harmful to them, because the treatment itself causes them to not have insight into the harm that is being caused.  This is discussed in an article titled “Intoxication Anosognosia: The Spellbinding Effect of Psychiatric Drugs available at http://psychrights.org/articles/breggin2006ehpppsychdrugspellbinding.pdf

A complete “informed consent” process could include discussion of this possibility.

  [xvi] It has been estimated that 20% of those taking neuroleptics experience no benefits whatsoever:  see “Cromwell, R. (1993) “A Summary View of Schizophrenia”, in: Cromwell, R. and Snyder, C. Schizophrenia: Origins, Processes, Treatment, and Outcome, New York: Oxford University Press. 

  [xvii] It is now widely recognized that antidepressants can made some people suicidal; they can also cause akathisia, which makes people feel more anxious, even though these same antidepressants are also used to reduce anxiety.  Other paradoxical effects can easily occur:  for example see “Bowers, M.B., Jr. and M.E. Swigar, Psychotic patients who become worse on neuroleptics. J Clin Psychopharmacol, 1988. 8(6): p. 417-21.”

  [xviii] A summary of the reasons for concerns that psychiatric medications of many kinds may be contributing to long term worsening of the conditions they were meant to treat may be found in “Whitaker, R., Anatomy of an Epidemic: Psychiatric Drugs and the Astonishing Rise of Mental Illness in America. ETHICAL HUMAN PSYCHOLOGY AND PSYCHIATRY, 2005. 7(1): p. 23.”  This article may be found online at http://psychrights.org/articles/EHPPPsychDrugEpidemic(Whitaker).pdf

It is often believed that studies showing higher relapse rates among people who attempt to stop psychiatric medications after many years of use can be taken as evidence that these medications have long term effectiveness.  However, the same argument might be used to claim that alcohol is an effective long term treatment for anxiety, since those who use it long term to control anxiety find that their anxiety spikes to as bad or worse than ever when alcohol use is discontinued.  It may be simply that using the drug makes it more difficult to learn to recover and live without the drug.  A more useful long term comparison would be between those who have used medications long term to control a psychiatric problem, and those who have used other methods over similar time spans.  Unambiguous research of this sort does not exist, but one of the next best things, comparisons with rates of improvement in the pre-drug era, have not yielded reasons to believe in the long term effectiveness of psychiatric medications.  For neuroleptics, see “Bockoven, J . & Solomon, H . (1975) . Comparison of two five-year follow-up studies . American Journal of Psychiatry, 132, 796-801.”  For mood stabilizers, see “Harris, M., et al., The impact of mood stabilizers on bipolar disorder: the 1890s and 1990s compared. Hist Psychiatry, 2005. 16(Pt 4 (no 64)): p. 423-34.”

  [xix] While attempts have been made to discern just who will definitely require medication in order to overcome mental and emotional problems, and who will not, such attempts have shown very limited success.  This means that uncertainty about whether medications are really necessary remains until all other possible options have been tried, or in practical terms, that no one can ever say for sure that a particular medication is definitely “necessary” for a given person or is the only option that could work.  One article that discusses some of this uncertainty in regards to psychosis is “Bola, J.R. and L.R. Mosher, At issue: predicting drug-free treatment response in acute psychosis from the Soteria project. Schizophr Bull, 2002. 28(4): p. 559-75.”   This article is available online at http://socialwork.usc.edu/~bola/publications/BolaMosher_Carpenter2002.pdf

  [xx] Client-Directed Outcome-Informed Treatment & Training Manual , available at http://www.talkingcure.com/bookstore.asp?id=57 updated with the latest research and information on what works in therapy and how to implement it in your practice or clinic. 

  [xxi] See Consumer/Survivor-Operated Self-Help Programs: A Technical Report by Substance Abuse and Mental Health Services Administration, Center for Mental Health Services.  Available at http://psychrights.org/Research/Digest/COSPs/COSPs.htm

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