March 2010 Archives
DSM-IV provides separate categories for Substance Abuse and Substance Dependence. The typical substance abuser is someone who gets into recurrent, but intermittent, trouble as a consequence of recreational binges. This is in contrast to the continuous and compulsive pattern of use that is typical of DSM-IV Substance Dependence.
At the extremes, the difference between abuse and dependence are clear cut. The abuser goes through periods when he seems able to take it or leave it, using the substance in a controlled way or abstaining from it altogether. Then comes the bender with a bad outcome. Another peaceful period, then another destructive bender, and so on. The person doesn't learn from the repeated painful experiences that a couple of drinks (or snorts or pills or joints) can lead to a binge, and a binge can, and often does, have serious (and sometimes even catastrophic) consequences.
Substance Abuse also must be distinguished from run of the mill recreational bingeing, which is unfortunate but usually does not qualify as a mental disorder. The definition of Substance Abuse requires that there be "a maladaptive pattern of substance use manifested by significant adverse consequences" in at least one of four different domains of trouble: 1) driving under the influence; 2) other legal problems (e.g., disorderly conduct, assault, etc.); 3) reduced performance at work or school; and 4) problems with interpersonal relations and family life.
Substance Abuse can be the first step on a path that eventually leads to Substance Dependence. The threshold between the two is crossed when the periodic bingeing turns into continuous use and the motivation switches from pleasurable recreation to needing the substance on a regular basis just to get by. Substance Dependence requires some combination of 1) tolerance, 2) withdrawal, and 3) a pattern of compulsive use. Tolerance means you have diminishing pleasurable returns -- you need to take more and more of the substance to get the same buzz or any buzz at all. Withdrawal means that trying to reduce or stop the substance leads to unpleasant (and sometimes dangerous) symptoms that will drive you to start using again. Compulsive use means you feel driven to do whatever it takes to get the substance despite the fact that it no longer provides much, if any, pleasure.
The DSM-5 draft suggests two radical changes: 1) eliminating the separate categories of Substance Abuse and Substance Dependence and replacing them with one unified category, Substance Use Disorder, and 2) labeling the overall section "The Addiction and Related Disorders." The combined result would be that someone now diagnosed as having DSM-IV Substance Abuse would, in DSM-5, instead be diagnosed as Substance Use Disorder and (given the title of the overall section) would be considered to have an addictive disorder.
The DSM-5 rationale for consolidating what in DSM-IV are the separate categories of Substance Abuse and Substance Dependence comes from factor analytic and latent class analyses that suggest that there is no sharp boundary between them (although the results and their interpretation are far from definitive). The work group is impressed by analyses suggesting that abuse and dependence are unidimensional and lack a point of separation clearly demarcating a boundary between them.
This is a weak rationale and reflects a basic misunderstanding about the nature of all mental disorders: that none of them enjoys a clear boundary with near neighbors. All the DSM disorders overlap with one another and, frequently, also with normality. For example, there is no clear boundary between bipolar and unipolar mood disorder, between anxiety and depression, even between schizophrenic and psychotic mood disorders, and so on, throughout all the sections.
There is thus no matter of principle at stake here. If substance abuse and dependence are to be joined, it must be because there is a clear practical benefit of doing so that outweighs the risks. The work group suggests no pressing practical problem that needs fixing with the DSM-IV definition Substance Abuse. I can see no benefit in its elimination, but there are three substantial risks:
First, what is now Substance Abuse in DSM-IV would be subsumed in a section labeled "Addiction Disorder" in DSM-5. I think it is unwise and unfair to pin the pejorative and stigmatizing label "addict" on someone whose substance problems are intermittent, may be temporary, and are often very influenced by contextual and developmental factors. Take the example of a college kid in a hard-drinking fraternity who binges on weekends and gets into one fight and has one DUI. He is obviously already in serious trouble (and flirting with much worse). His situation certainly does require rigorous and immediate intervention. But what is gained by the stigmatizing label addiction that may jeopardize future insurance, marital and job prospects, and legal status? Most substance abusers are in a passing phase and never become "addicted" in any meaningful sense of that word.
The term "addiction" has never (in its entire history of loose usage) been used in so loose and indiscriminate a fashion. If there is some compelling reason to include it at all in DSM-5 (a question to be addressed in another piece), "addiction" should replace only the term "substance dependence." Allowing the term "addiction" to also cover "substance abuse" seems unnecessary, misleading and potentially harmful.
Second, combining Substance Abuse and Dependence would result in the loss of much valuable distinguishing information, which would all melt into the amalgam. There is a world of difference in behavior, treatment needs and prognosis separating abuse and dependence. The label "substance dependence" clues the clinician that abstinence may trigger severe physiological or psychological withdrawal reactions requiring a special intensity of medical and rehabilitation response. Intervention with abusers, on the other hand, will be more directed to the harmful consequences of the binges, how to avoid binges, and the substitution of other, less dangerous recreational activities. There is also a considerable difference in prognosis: While some with an early history of substance abuse later go on to dependence, most do not and are much more likely to have an early and permanent remission.
Third, the message to the abuser that he is "addicted" to the substance can cut both ways. It might benefit some who would heed this dire warning and take the opportunity to go abstinent. But many others may seize on the many unfortunate connotations associated with being "addicted," including 1) that the substance has already gained a central (and difficult to end) role in the persons life; 2) that it will be terribly difficult to give up the substance because of psychological and/or physical dependence and painful withdrawal symptoms; 3) that all this is somehow biological, fated in the genes, and outside his control or ability to change; and 4) that the individual has reduced personal responsibility for substance use and its consequences. Being "addicted" can become a self-fulfilling prophecy and a great excuse for not meeting responsibilities to self, family, school, and the legal system.
This leads me to suggest two recommendations: 1) retain the useful distinction between Substance Abuse and Substance Dependence; and 2) if the term "addiction" is to be used at all in DSM-5, it should be restricted to substance dependence.
Among all the problematic suggestions for DSM-5, the proposal for a "Psychosis Risk Syndrome" stands out as the most ill-conceived and potentially harmful one. It aims to solve a pressing problem in psychiatry -- the need for early identification and preventive treatment. Psychotic episodes create tremendous short-term impairment and may impact negatively on long-term prognosis and treatment efficacy. It would save great suffering if we could get there early and do something useful to reduce the lifetime burden of illness before too much damage is done.
But good intentions are not enough. The whole concept of early intervention rests on three fundamental pillars: being able to diagnose the right people and then providing them with a treatment that is effective and safe. "Psychosis Risk Syndrome" fails badly on all three counts: 1) it would misidentify many teenagers who are not really at risk for psychosis; 2) the treatment they would most often receive (atypical antipsychotic medication) has no proven efficacy; but, 3) it does have definite dangerous complications.
First, let's deal with the misidentification problem. Even in the most expert of hands (i.e., in very highly selected research clinics), at least two of three people who get the diagnosis do not go on to become psychotic. Of great counterintuitive interest, the longer the research clinic operates, the lower becomes its rate of correct identification. With time and spreading reputation, the clinic attracts increasingly heterogeneous referrals, making it more difficult to discriminate from among them those who are truly at risk for psychosis.
What would be the misidentification rate once the diagnosis became official and was applied in the real world? No one can say for sure, but two-thirds is certainly a lower limit of misidentification. There are several reasons to believe that the ratio of wrong diagnoses would actually be much higher: 1) the raters in general practice would be much less expert than specialists in research clinics; 2) the "patients" would be closer to normal and harder to discriminate; and 3) drug company marketing would influence parents and clinicians to be especially alert to any strangeness in teenagers. It has been estimated that the false-positive rate would jump from about 70 percent in specialty clinics to about 90 percent in general practice. This means that as many as an astounding nine in ten individuals identified as "risk syndrome" would not really be at risk for developing psychosis.
Those supporting the diagnosis for DSM-5have attempted to fix this overwhelming problem by inserting a definitional criterion that the person must be seeking treatment. They hope this requirement would both reduce the rate of false positives and ensure that those who are misidentified will need some form of treatment. Their preferred treatment for "risk syndrome" is cognitive/behavior therapy, which might be helpful (and is unlikely to be harmful) even to those who have been misidentified.
This fix fails badly on both counts -- i.e., in reducing false positives and in guaranteeing safe treatment. Under the best of circumstances, the overwhelming majority of "treatment seekers" will still be false positive. Once the diagnosis is official and marketed, the problem will get much worse as a new army of "treatment seekers" is brought in by their families. Their perceived "strangeness" may come from many causes other than psychotic risk, including: 1) drug use; 2) adolescent developmental issues and rebelliousness; 3) culturally dystonic creativity; 4) stable schizotypal personality; or 5) normal eccentricity. A far more efficient signal to noise-filter would have been to require that the individual must also have a close family member who has experienced psychotic episodes.
Then we get to the troublesome treatment issues. It is the height of unrealistic wishful thinking to assume that most of the misidentified patients will get cognitive therapy. Cognitive therapy is in short supply and largely unavailable -- especially for this population. On the other hand, antipsychotic medications are fairly ubiquitous and already frequently given for off-label indications, particularly to kids on Medicaid.
It has not yet been established that antipsychotic medications are effective in preventing psychotic episodes or in improving life course in those who would meet the criteria for "risk syndrome." This is an area that, to date, has received little study, and the few existing findings are equivocal.
In contrast, the harmful effects of atypical antipsychotics are extremely well established and frightening. Teenagers starting at an average weight of 110 pounds gained an average of 12 pounds in 12 weeks, and one of the antipsychotics caused an 18-pound weight gain in this period. This raises the risk for diabetes, metabolic syndrome, and a shorter life span.
To sum up: The "risk syndrome" would misidentify many (somewhere between 3 and 9) kids for every one correctly identified, and the treatment most likely to be offered has no proven efficacy, but can have extremely dangerous complications. This is clearly the prescription for an iatrogenic public-health disaster.
The goal of early identification and proactive treatment in psychiatry is laudable, but also elusive and not currently attainable. Prevention requires having a happy combination of accurate identification and effective and safe treatment. Instead, we now have the opposite dangerous combination: wildly inaccurate identification with a likely ineffective but definitely risky treatment.
The people who developed the "risk syndrome" suggestion for DSM-5 are smart and have no conflict of interest motivation. How can they be promoting such a bad idea? The answer is that, like most experts, they have a blind spot when it comes to understanding the huge gulf between the real world and their rarefied research experience. Perhaps in their hands, the false-positive rate can be kept to two out of three, and the cognitive treatments given will be safe and generally helpful. It has been difficult for them to appreciate just how differently and destructively their pet suggestion would play were it to become prematurely official. "Psychosis Risk Syndrome" belongs in the DSM appendix reserved for new diagnoses that deserve further study but are not ready for prime time.
The recently posted draft of DSM-5 makes a seemingly small suggestion that would profoundly impact how grief is handled by psychiatry. It would allow the diagnosis of Major Depression even if the person is grieving immediately after the loss of a loved one. Many people now considered to be experiencing a variation of normal grief would instead get a mental disorder label. For example, take the case of a man whose spouse unexpectedly dies. For two weeks after the death, he feels sad, doesn't want to go to work, loses his appetite, and has trouble sleeping and concentrating. Currently, this is normal grief. The DSM-5 suggestion would call this major depression.
Undoubtedly, this would be helpful for some people who would receive much-needed treatment earlier than would otherwise be the case. But for many others, an inaccurate and unnecessary psychiatric diagnosis could have many harmful effects. Medicalizing normal grief stigmatizes and reduces the normalcy and dignity of the pain, short circuits the expected existential processing of the loss, reduces reliance on the many well-established cultural rituals for consoling grief, and would subject many people to unnecessary and potentially harmful medication treatment.
Grief is an inescapable part of the mammalian experience and a necessary correlate of our ability to attach so strongly to other people. Though grief is universal, there is no one right way to grieve. Different cultures prescribe a wide variety of different behavioral and emotional reactions and rituals. Psychiatry needs to tread lightly and have compelling reasons before encroaching with its own rituals on such time-honored and usually effective practices.
Within a given culture, normal individuals also vary enormously in the content, symptoms, duration, and impairment of their grief and in their ability to draw consolation and sustenance from others. There is no bright line separating those who are experiencing loss in their own necessary and particular way from those who will stay stuck in a depression unless they receive specialized psychiatric help.
The numbers on each side of the normal/mental disorder divide are probably very lopsided; most people who grieve do not have a mental disorder. Ever since the dawn of humanity, people have had frequent occasions to grieve. Almost all of us come to terms with the loss and the altered conditions of a new life without the benefits of psychiatry -- and do just fine on our own. The change in DSM-5 would attempt to identify the very small percentage of people who have a complicated grief that goes beyond the expected average in severity, symptom pattern and duration -- those who would not remit as part of the natural evolution of their grief. But when you use a big shovel to capture a small needle in the haystack, most of what you get is hay. Any change in the way DSM-5 defines grief may gather a very large proportion of false positives who would do better avoiding psychiatric help.
The rationale given by DSM-5 for its radical proposal is brief, cryptic, and fails to provide anything like a risk/benefit analysis of potential effects. DSM-5 states that there is no evidence that the depression triggered by the stress of losing a loved one is any different than depression triggered by other severe stressors, such as job loss or divorce, thus claiming that there is no justification to withhold the diagnosis of major depression after a loss. This rationale places the burden of proof in the wrong direction. DSM-5 should make so consequential a change only after a careful and considered evaluation proves with compelling evidence that it will do more good than harm.
Such evidence is simply not available. The research in this area is interesting but in very early development, and we don't know many essential things. We have no idea how any proposed criteria set would work in the general population. What percentage of grieving individuals would get the diagnosis (especially once drug companies raise awareness of it)? Among the people who would be diagnosed, we wouldn't know what percentage truly needs psychiatric help and what percentage would do better without it.
Pies and Ziskind (in a recent commentary in Psychiatric Times) have gone far beyond the meager DSM-5 rationale to present the strongest possible case for allowing the diagnosis of Major Depression in grief situations. They cite several lines of argument:
1) There is a clinical need: Some individuals have severe, complicated grief that looks just like severe Major Depression and does not get better spontaneously. The longer that diagnosis and treatment are delayed, the greater their suffering, impairment, and risks (e.g., job loss, injured relationships, lowered treatment response, suicide).
2) The loss of a loved one is not essentially different from the many other serious stressors that abound in life.
3) It is impossible to predict the future misuse of the DSM-5 system, so we should make decisions based only on the best possible science.
4) The criteria for complicated grief could be tightened to reduce false positives (They suggest two useful ways described below, and I add two others).
5) Education can solve the problem of false positive diagnosis and the risk of providing medicine in milder cases when time, support and/or psychotherapy would be more indicated.
The excellent proposal made by Pies/Ziskind to reduce false positives could be strengthened even further if two additional exclusions were added to the two that they suggested (items 1 and 2 below). The entire package differentiating grief from depression would require:
1) An extended duration of one month.
2) A particularly severe presentation that includes some combination of unreasonable guilt, worthlessness, hopelessness, self loathing, anhedonia, a focus on negative memories of the departed, alienation from others, and inability to be consoled.
3) To recognize the different cultural expressions, the diagnosis of depression would not be made if the person's grief were to be within cultural norms.
4) An exclusion could be added that would take into account the person's own past experience of grief and its previous outcomes. If the individual previously had severe grief symptoms, but recovered spontaneously (without going on to Major Depression), this would suggest they are now grieving their own way and do not require diagnosis or treatment.
DSM-5 has made many poorly thought through suggestions that can be fairly easily dismissed. Although the Pies/Ziskind proposal is reasonable and deserves serious consideration, I continue to disagree with it. Here are the opposing points:
1) With regard to clinical need: In appropriate cases, displaying clinically significant impairment, distress, or risk, the diagnosis Depression Not Otherwise Specified covers their false negative problem.
2) I believe there is a difference between losing a loved one and most other life stressors. This explains why grief is the universal target of communal healing rituals. It would be unfortunate for psychiatry to prematurely roam into problems usually better handled by family and other cultural institutions. Cultural biases would be very hard to surmount in making this diagnosis.
3) My disagreement with Pies and Ziskind is strongest on this point. All decisions for DSM-5 should follow the injunction, "First, Do No Harm." Although it is impossible to predict precisely how any DSM-5 change will eventually play out once the manual is in general use, that doesn't reduce DSM's responsibility for the problems that occur, even if they are unintended. All potential risks have to be thought through and factored into a thorough risk/benefit analysis. The argument that we should just go to where the science takes us ignores that the science is, as they point out, not definitive, is subject to different interpretations, and is not readily transferrable from research to real world settings. Once the genie is out of the bottle and DSM-5 makes it easy to diagnose depression in grief situations, this could easily become an industry-propelled fad diagnosis.
4) The tightened criteria would help reduce, but certainly not eliminate, the grave potential harm caused by the massive misidentification of false positives. False positives and excessive treatment are not be a problem for skilled and cautious clinicians (like Pies and Ziskind), but in the real world most of the prescriptions will be written by primary care physicians who have six minutes with each patient, don't know the fine points of the criteria sets, and want the fastest solution. The false positive problem is too unknown and potentially far too large to ignore. At a minimum, there would need to be field trials to determine prevalence, reliability, and false-positive and false-negative rates. I doubt that DSM-5 has the time, money, and skill to pull this off.
5) It would be naive and unwise to rest our hopes on an expectation that any educational program would reduce overdiagnosis and the overprescription of medication in grief situations. To the contrary, most of the education would go the other way. The drug companies devote enormous resources to "educating" physicians to be quick on the draw in prescribing medication.
I respect the arguments made by Pies and Ziskind; the arguments work well when applied by experts like them. My worry is the misuse of even reasonable ideas in the real world situations where most diagnosis and treatment are done. Loose diagnostic and treating habits could lead to the widespread medicalization of grief well beyond what Pies and Ziskind would themselves recommend.
There are two ways of avoiding this. The first is to keep things as they are and not to diagnose Major Depressive Disorder in the first two months after the loss of a loved one.
The second is for DSM-5 to allow for the diagnosis of complicated grief, but with a criteria threshold set high and including all four protections against false positives outlined above. As recommended by Pies and Ziskind, there should also be a physician and public education campaign normalizing normal grief and sharply delimiting the small group of grievers who need psychiatric help.
Weighing the pluses and minuses, my call is to keep things as they are and not risk an "epidemic" of psychiatric grief.
There has been an "epidemic" of autism in the last 15 years. This used to be a very rare condition diagnosed less than once in every two thousand kids. Now it is diagnosed once in a hundred. We will elsewhere discuss the foolish theory that this was caused by vaccinations. Here we will trace the real causes.
People change slowly, if at all. In contrast, fads in psychiatric diagnosis can come and go in a fast and furious fashion. The autism fad resulted from changes in DSM-IV (published in 1994) interacting with a strong societal push.
There were two DSM-IV contributions: 1) the inclusion of a surprisingly popular new diagnosis, Asperger's Disorder; and, much less importantly, 2) editorial revisions meant only to clarify the criteria for Autistic Disorder, but which may have inadvertently lowered the threshold for its diagnosis.
The societal contributions were: 1) expanded school and therapeutic services whose reimbursement often required an autism diagnosis; 2) increased advocacy; 3) reduced stigma, especially when many successful people admitted to having Asperger's; 4) extensive press coverage; 5) an explosive growth in Internet information and social interaction; and, as a result of all these, 6) improved surveillance and identification by doctors, teachers, families, and by the patients themselves.
For many of the newly identified patients, getting a diagnosis has brought the advantages of: 1) improved school and therapeutic services; 2) reduced stigma; 3) increased family understanding; 4) reduced sense of isolation; and 5) Internet support and camaraderie.
But there are always costs. With its lowered diagnostic thresholds and resulting increased inclusivity, Asperger's brought autism to the fuzzy boundary with normal eccentricity and social awkwardness. Some people are misidentified as having the diagnosis, when they really don't. This is especially true when the diagnosis is made in less expert hands in primary care medical facilities and in school systems.
Overdiagnosis creates the personal costs of: 1) stigma; 2) reduced self and family expectations; and 3) having to undergo unnecessary treatment and educational interventions. The societal costs of overdiagnosis are: 1) the diversion of scarce educational and therapeutic resources away from those who most need them; and 2) the parental panic and confusion occasioned by the false "epidemic."
The diagnosis of Asperger's Disorder was introduced by DSM-IV because its advantages were judged to outweigh its risks. It seemed important to have a specific category to cover the substantial group of patients who failed to meet the stringent criteria for autistic disorder, but nonetheless had substantial distress or impairment from their stereotyped interests, eccentric behaviors, and interpersonal problems.
The public panic about the seeming spread of autism resulted from a misunderstanding of how psychiatric diagnosis works, i.e., how arbitrary it can be and how sensitive prevalence rates are to changes in definition. As chair of the DSM-IV Task Force, I am partly to blame for not having anticipated this risk. We should have proactively taken steps to educate the public. It would have been useful in advance to predict the changes in diagnostic rates and to explain their causes. We were aware that Asperger's would have a much higher prevalence than classic autism, but we greatly underestimated the magnitude of the difference and the rapidity and degree of the public's panicked sense that the world, rather than just the labels, had changed. We failed in our responsibility to make clear to the public and to the press what the labels meant and what they do not mean.
A new revision of the diagnostic manual is now in its first draft and can be viewed at http://www.dsm5.org. DSM-5 proposes another radical reorganization in how autism is defined. Instead of separating classic autism from Asperger's, there would be one unified "autism spectrum" disorder with a single criteria set. The rationale is that there is no clear boundary between the two, and that autism is more conveniently seen as one disorder, presenting with different levels of severity. The DSM-5 proposal also has the virtue of attempting to raise the diagnostic requirements for the milder presentations of autism above those required for Asperger's in DSM-IV. The Work Group is appropriately worried about false positives and the proposed criteria set would theoretically reduce the rate of misidentified autism.
There are two perhaps equally strong arguments against this possibly useful DSM-5 proposal: 1) that it will increase the stigma attached to the milder forms of (Asperger's) autistic behavior if they are lumped together with the much more severe, and 2) because clinicians often ignore the fine points of what is required by the criteria thresholds, the "autism spectrum" may in practice actually expand even further to capture ever milder forms of eccentricity, contributing to an even higher prevalence of misidentified "autism." This is obviously the opposite of what the Work Group intends, but it could be an unintended consequence.
The reply to these objections could be that: 1) autism will lose some of its stigma if the public comes to associate it with milder cases; and 2) the Work Group can only do what the science says and can't be expected to predict or prevent misuse once their work is in the public domain.
The first point can be argued either way, but I would strongly disagree with the second. Our DSM-IV experience makes clear that the Work Group must consider all the possible risks once the changes are applied (or possibly misapplied) in general medical and educational practice. Ideas generated in rarefied research environments often take on an unfortunate life of their own in the real world.
The DSM-5 proposal is highly controversial both within the professional community and among the advocacy groups, which have both strong supporters and equally strong critics and probably about an equal weight of argument on both sides. When it comes to labeling, the heat of the argument is often a direct reflection that there are no clear right answers. The major point is to ensure that DSM-5 not provoke a further misleading "epidemic" of autism. The criteria set should retain and enhance items that will reduce the risk of false positive diagnosis. Proposed changes and alternative wordings need careful field-testing in nonspecialist settings to determine their likely future impact on rates. Even small wording changes can have a profound impact on who is, and who is not, diagnosed.
Ultimately, there will not ever be a clear correct verdict on the DSM-5 proposal to unify autistic disorders within one rubric. The scientific evidence is not overwhelming either way and is subject to different plausible interpretations. The stigma question cuts both ways. The services issues will have to be dealt with whether there is one diagnosis or two.
As I see it, there are four real issues that cut below the controversies: 1) the importance of reducing false positive diagnosis by refining the criteria sets and raising the threshold requirements (at a minimum, the goal should be a diagnosis that has considerable stability over time and reduced wiggle room for careless use in general medical and educational settings); 2) the need to educate doctors, psychologists, educators, families and patients that not all eccentricity is mental disorder; 3) the need to educate the public and the press that diagnostic habits and systems change far faster than people do; and 4) getting past the ridiculous idea that this has anything to do with vaccination.
The way to avoid definitional "epidemics" is to be cautious in changing definitions. The way to avoid panics about them is to be mindful that labels can be misunderstood and can be misleading.
NIMH vs. DSM 5: No One Wins, Patients Lose