Lead, Follow, or Get Out of the Way! (A Layman Perspective on Change)
The worthwhile discussions of DxSummit may be rendered meaningless if not accompanied by a plan of action reflecting the insights generated here. This article proposes a plan of action for comment and refinement.
I write this article out of a mixture of feelings and perceptions concerning DxSummit and its contributors. I’ve been visiting here since shortly after the site was commissioned. I’ve read almost all of the articles. I have contributed one paper (“Psychogenic Pain and Iatrogenic Suicide”) and commented at length on many more.
As of early September 2013, DxSummit had published 58 posts and 149 comments in 21 categories. A range of opinion is reflected here, with a primary focus on the many failings of the 5th edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5), published last May. Some authors have elaborated particular dimensions and dangers of those failings. Others have gone further than the most recent follies of the American Psychiatric Association (APA), to explore alternatives to the diagnostic system and address deeper underlying paradigms of psychiatry and psychology as an essentially failed discipline.
Though I acknowledge the positive intent of professional contributors, I must still share an observation that might be (accurately) heard as scolding. Much of the DxSummit commentary seems to me informative and educational… but so what? In a phrase familiar to people in 12-step recovery programs, “if nothing changes… then nothing changes.”
It is my reading that absent a program for change and the sustained investment of energy, time and money by thousands of activists in working that program, nothing useful will come out of this forum. Nothing. I don’t see a program coming together here. So I will immodestly propose a program framework. I challenge those of you who are willing to go where the weak of heart will not, to either refine and lead that program, embrace it on behalf of your clients, or step aside and stop deluding yourself that you came here to make a difference.
In another popular phrase, “if you’re not part of the solutions, then you’re part of the problem!”
Mental health professionals may notice as we continue, that I write in first person and sometimes address the reader as “you”. These artifacts are not accidental. If you have read my comments on DxSummit, then you know I am not one of you. I am not a practicing professional in the healing arts. Though I am deeply experienced in experimental design and research analysis, my doctoral degree is in engineering systems, not psychology.
My pertinent practical experience comprises 18 years as a volunteer online researcher, writer, web master and advocate in community service to chronic face pain patients. Forty years ago, I was also a client in therapy. In my mid-50s, I lived through a year on anti-depressant meds during a mid-life depressive crisis. A lot of shelf space in my personal library is devoted to psychology, psychiatry, philosophy and their discontents. But I am definitely not one of you.
I write instead as an outsider critic and skeptical observer. I frequently interact with medical patients who have been told that their physical pain is “all in your head.” I am not so arrogant as to represent myself as an advocate for all of these clients or of your clients. But I am at least an informed layman supporter for some who have not been well served by the professions in which you practice. And I ask you as readers, to hear me out before you dismiss what I have to say. Many clients in your own practices might recognize themselves in this article. Feel free to share it with them and to ask for their opinions.
What is the Present State of the Healing Arts?
I believe that the papers and commentary published on DxSummit (and references therein) lend support in the aggregate to the following observations about the existing state of psychology and psychiatry.
1. The 5th edition of the Diagnostic and Statistical Manual of Mental Disorders is an abysmal and dangerous failure for multiple reasons. It should be expeditiously withdrawn as a standard for professional practice and education in the healing arts.
a. The consultation process which produced the DSM-5 was effectively closed to non-psychiatrist stakeholders: psychologists, medical doctors, social workers, counselors and clients themselves. Despite advertising a public gateway to its deliberations, the DSM Task Force consistently discounted and ignored outsider concerns and input.
b. Definitions of many “disorders” in the DSM-5 were almost certainly influenced by funding relationships of professionals on the DSM Task Force. Many Task Force members had received grants from pharmaceutical companies that stood to gain sales from the shaping of DSM definitions. Such influence is properly regarded as a conflict of interest but was not reported as such, even when past grants were acknowledged.
c. There is little or no objective observational science to support more than half of the diagnostic categories defined in DSM-5 and its predecessor editions. Field trials were conducted to sloppy protocols, often in unrepresentative venues. Unreliable and incomplete results call into question the basic validity of many disorder definitions as well as the effectiveness of existing and proposed treatment protocols.
d. Some of the newest disorder categories defined in the DSM-5 have potential to damage millions of patients by denying them effective and appropriate examination of unexplained medical symptoms that are reported by up to 40% of patients referred to neurologists. Particularly egregious are the broadly defined “Somatic Symptom Disorder” and “Functional Neurological Symptom Disorder (Conversion Disorder)”. Once assigned to a medical patient, these labels are widely translated as “it’s all in your head”. Patients so labeled encounter barriers to further medical testing or evaluation for unexplained medical symptoms. There are also no effective alternative treatment protocols from the mental health community.
e. Also of deep concern is the loosening of criteria for diagnosing adolescents with ADHD and everyone with bipolar disorder— both presumed without rigorous evidence to require long-term use of powerful medications. These do not appear to be the only significant errors in the DSM-5
2. The unscientific and dangerous folly of the DSM-5 occurs in a broader context of distortions in psychiatry and psychology. Though the term “medicalization” is regarded by some as imprecise, it largely comprises a biasing of our response to emotional distress toward medication, supplanting less medically invasive protocols—including watchful waiting and simple trust in human recuperative powers, in preference to any form of active intervention.
a. Use of psychotropic medications has exploded during the past 20 years. There is ample evidence that millions of US citizens and others are over-medicated with drugs whose long-term effects are either known to be dangerous, or have not been documented in realistic long-term trials. Drugged populations are also getting younger with the wide spread use of medications in children and adolescents labeled with ADHD and bipolar disorder.
b. Pharmaceutical companies have paid fines in the hundreds of millions of dollars for promoting their products in unproven off-label uses. The reported effectiveness of these products has been deliberately inflated by cherry-picking positive trials and suppressing negative trials in the FDA drug approval process. Despite the fines, both practices continue, with legal costs being written off as mere overhead. Corporate marketers who should more accurately be regarded as potential inmates, have captured control of the asylum.
c. 80% of all anti-depressant medications are prescribed by MD practitioners on the strength of office appointments lasting less than 10 minutes. General Practitioners have very limited training in psychological evaluation of patients. No substantive evaluation is possible in 10 minutes, before assignment of a diagnosis and prescription of psychotropic medications. Followup by the prescribing doctor may also be compromised by excessive workloads in community practice venues.
d. A golden rule of thirds known to the ancient Greeks has lost credence in a rush to treat all conditions of modern life and to define as problems, conditions once accepted as normal parts of daily life. Now both medical and psychiatric doctors largely ignore the dictum that about a third of all problems seen by a healer will respond to treatment, while another third will heal spontaneously without treatment and a final third will not heal regardless of what is done by Shamans. The human and financial costs of this failure of insight are substantial.
3. The US National Institute of Mental Health has gone on record declaring that the DSM-5 will be dropped as an organizing framework for mental health research, in favor of a “Research Domain Criteria” project. The RDoC project is focused upon neurological research and the functionality of the brain.
a. Unfortunately, the RDoC is widely considered to be *at least* 10 years away from a level of maturity that might lead to effective treatments for mental health issues. Likewise, prospects seem doubtful for the rapid evolution of neurological alternatives to the DSM-5. As evidence for this observation, we should note that there have been no significant mental health-related drug breakthroughs in at least 20 years.
b. While continued research seems warranted in brain neurology for emotion, perception, learning and other functions, it seems deeply implausible to expect brain research to produce highly targeted and effective medications for problems deemed mental in their presentation. Brain processes can accurately be characterized as redundant, multi-factorial, thresholded, non-linear, self-adaptive, distributed and stochastic—terms recognizable to many engineers, but to relatively few medical practitioners or medical researchers. The net impact of these dimensions is that many of the brain’s internal processes inherently cannot be observed, isolated or safely modified under rigorous experimental conditions. Thus expecting neurology to replace psychology seems simplistic and naive.
c. Lest I be accused of advocating for the replacement of neurology by psychotherapy or counseling, we should also acknowledge a second reality. Talking therapies and counseling have little to offer patients who suffer from major cognitive disorganization now characterized as psychosis, delusions, paranoia, schizophrenia, bipolar disorder, obsessive-compulsive disorder, borderline personality, or violent sociopathic behavior. This reality has been known since double-blind trials of psychotherapy protocols in the 1950s. Thus existing medications—with all of their real faults and dangers—may have an ongoing role in the management of severe mental dysfunction. The challenge is to determine in which patients they can be used safely and for how long.
4. Some authors on DxSummit have voiced a belief (in the tradition of Thomas Szasz) that not only was the DSM process flawed, but the entire diagnostic paradigm which now dominates psychiatry and psychology may be untenable in its root concepts. Grounds for such a belief seem to include the following.
a. Some authors complain of what they regard as an arbitrary Cartesian division of healing into separate domains of the psyche and soma. It is asserted that treatment for disease and distress should address both as an integrated and interactive whole. There is plausibility in this assertion. However, it must be acknowledged that health practitioners do not yet know how to perform this integration reliably. Likewise the implied scope of practice under an integrated model will almost certainly greatly increase the time and expense required to train doctors, if it can be done at all. Practice standards almost inevitably must evolve away from individual practitioners and toward multi-disciplinary teams.
b. By focusing on labeling and treating behaviors as symptoms rather than addressing the needs and desires of the whole person, it is said that mental health practice loses the essence of the individual and becomes merely another agency for mass social control. But unspoken in this observation is the reality that society and civilization are complex interactive systems in which individual disruptive behaviors can materially harm other people. No social system can be completely free of individual controls, either self-managed or externally imposed. Mental health practitioners cannot reasonably expect to live in safe isolation from responsibility for addressing elements of this reality.
c. Disease models for mental and emotional disorder and distress are arguably inherently stigmatizing in ways that may not pertain for physical issues. In medical disease, the patient’s self-observations and self-management are important in their recovery. But in “mental disease” patients are often told that their self-observations cannot be trusted and they must accept being “fixed” by an outside party—whether they want to be fixed or not.
d. The concept of mental disease may itself be unreliable. Unlike physical disease, there are few predictive or specific “signs and symptoms” on which to base therapeutic interventions in mental distress, particularly in the early stages of development. The range of human psychological adaptation (or mal-adaptation) may be too wide to permit a cookbook approach to the treatment of human anguish. That said, the exercise of human judgment in assessing client capacity and welfare cannot be value-free, even from professionals.
Some mental health professionals dismiss these points of view, observing the lack of any widespread social acceptance of Dr. Szasz’ proposals of 50 years ago. Parenthetically, it does not seem unfair to observe that some of those who rejected Szasz are still being paid to practice interventions that disaffected clients have come to reject in their entirety.
A Proposed Action Plan
So what can be done about the state of the healing arts? Probably, quite a lot. But in my view, none of it will happen an an outgrowth of thinking small and hiding in academic ivory towers.
We must remember that in any action plan, the law of unintended consequences will apply. There are doubtless many aspects of the action list proposed below that can be criticized on such grounds. I make no claim to having the story perfectly right. It merely seems to me that the only outcome worse than doing some things wrong and later making course corrections could be sitting on our collective hands and doing nothing real to change the status quo. Psychiatry and psychology too often bring harm to patients and clients by the millions, while enriching pharmaceutical companies at the expense of the rest of us. This condition is unacceptable, and professionals need to stop being accessories to the crime.
Getting to a better place will require hard work and sacrifice on the part of those who read this article—not somebody else safely distant or undefined, but YOU! If you’re unwilling to change anything that affects you personally, then you aren’t serious about making a difference. There can be no “Let George Do It”. There is no other George or Georgette. You are George. Thus I offer the following proposed action plan.
1. There can be no useful change if nobody is aware of the need and a plan for action for addressing the need. In the seven months since the website of the Global Summit on Diagnostic Alternatives was first commissioned, it has received fewer than 15,000 visits. This is a pittance. Thus, meaningful engagement of public and professional participation may need to start with advertising the site and its deliberations. If you are serious about change, then you should be broadcasting emails or letters to every name in your address list, with a link to this article or to http://dxsummit.org/about . You might take as your title, “It’s Time for Major Change in Mental Health Standards!” The same consciousness raising should be applied to public media—newspapers, television and radio, as well as popular magazines. Publications in boutique journals with distributions of 10,000 are totally inadequate. You need an audience of millions and you need it NOW.
2. If you are still a member of the American Psychiatric Association, then reach out to fellow members and colleagues to prominently announce your resignation and to encourage others to do likewise. Given its reckless negligence and sloppiness in the DSM-5, the APA might be aptly described as a “Racketeer Influenced and Corrupt Organization.” In the view of many patients, major pharmaceutical companies and psychiatric practitioners, they have bribed with grant money are among the chief racketeers.
3. If you haven’t already purchased the DSM-5, then don’t. Most of it is nonsense and you don’t need it to obtain free insurance billing codes from the ICD-10. Most of the psychiatric section of the ICD is nonsense too and will need major condensation and redirection. But let’s take one step at a time. First starve the APA of funds and membership that sustains the DSM. Then work to reduce the number of scientifically suspect diagnoses.
4. Announce to your clients that you have resigned from the APA and why. Seek out and join alternative professional organizations through which to lobby actively for changes in mental health definitions and practice (more on that shortly).
5. Find a law firm which represents mental health clients in malpractice, negligence and reckless endangerment suits. Volunteer 10% of your professional time to help patients who have been harmed by doctors using DSM-5 category labels or practices unsupported by even rudimentary research. Encourage local law firms to pursue legal action not only against pharmaceutical companies as corporate entities, but against individual corporate officers by name, on grounds of conspiracy to defraud and reckless endangerment of the health of patients who use their over-hyped psychotropic products.
6. Commit yourself to lobby through professional associations at the US Federal level to ban the advertisement of prescription drugs in all US public media. Refuse to accept or use “free” medication samples from sales representatives and tell these shills that they need to go home and find an honest line of work.
7. Participate in lobbying the US Food and Drug Administration to require that drug submissions be supported by all applicable trials data, not just the positive trials—and that drug trials be conducted in representative outpatient environments, not just in hospitals or university medical centers.
8. If you regularly accept patient referrals from medical practitioners, school nurses or school psychologists, then announce to your colleagues that henceforth, you will not confirm their psychiatric diagnoses before doing an independent multiple session patient workup “from scratch”. When doing such workups, start from the assumption that the referral diagnosis is probably wrong unless strongly supported by evidence you have observed yourself. Likewise, lobby your medical colleagues to stop prescribing psychotropic drugs until they have completed a year of training beyond internship, on the use and side effects of such medications.
9. Participate or financially support the participation of other professionals in the structured and managed development of a new professional standard for characterizing human emotional and mental distress. We might call this standard something like “Compendium of Mental Health Assessment and Practice (CMHAP).
a. For multiple reasons, psychology and psychiatry cannot dispense with having “some” standard that establishes and limits the scope of its practice and regulates interfaces to physical medicine. This is reality despite the failure of the DSM-5 to meet even minimal standards of intellectual rigor and patient care. Professionals and patients cannot dispense with diagnosis as a step in treatment selection and follow up. Even recognizing such labels as provisional, to abolish all diagnostic standards would be to open the profession to all manner of quacks and opportunists—almost certainly making things worse.
b. An appropriate group to develop a new practice standard might be a consortium of representatives from all recognized mental health and counseling disciplines having a membership above some threshold (5,000? 50,000? Maybe readers can tell me.). Voting participation by educated laymen and clients should also be invited. Given its record of misperformance, the APA should not participate, though former members might do so through other associations. All financial grants or relationships of task force members to healthcare industry corporations must be publicly disclosed and subject to challenge by the public. A consortium accreditation committee should assess and act upon such challenges.
c. An appropriate time limit to build and publish the CMHAP standard should be not more than five years from start-up (three years would be better). This limit will doubtless require energetic full-time management to meet. It will also require the financial support of associations represented in the Consortium. In the meantime, diagnostic practice should be frozen at the DSM-IV or ICD-10.
d. The CMHAP standard should undertake a 75% reduction in the number of mental health conditions that are recognized as candidates for mental health-related intervention, treatment and third-party insurance reimbursement. Condition definitions could be organized around the most commonly observed (highest incidence) symptoms of distress; or alternately, the most widely recognized treatments demonstrated effective; or in perhaps the worst case, evolved out of the most commonly diagnosed mental disorders listed in the DSM-IV.
From whatever starting point, the desired end state is a list of mental health conditions which demonstrate the following characteristics:
(1) Each condition considered eligible for psychiatric intervention or treatment is characterized by signs, symptoms, behaviors, and a primary course of development which can be recognized and differentiated by practitioners and laymen alike.
(2) Each condition is associated with mental and emotional distress or quantifiable dysfunction in significant numbers of people. Boutique illnesses and their practitioners need not apply.
(3) Each condition has at least one distinctive treatment protocol which has been proven effective in randomized double blind field trials—in outpatient practice venues. If you can’t treat it successfully, then it isn’t a diagnosis; it’s a research issue.
(4) While some symptoms will likely overlap between defined disorders, categories should be sufficiently differentiated that each is treated by different means.
I submit that if a defined pattern of human distress does not meet all four of these criteria, then reimbursement for treatment should not be subsidized by health insurance. At most, such patterns might be identified for further research to improve definitions. Likewise, the CMHAP should recognize the need not to intervene or to treat mental states that are self-correcting. Generalized adolescent angst or anxiety may well be one of those states, and there are doubtless many others.
It may be complained that the CMHAP process described above is unduly centered upon symptoms and illness. However, I believe this complaint fails to acknowledge how most psychiatric or counseling clients come into a mental health setting in the first place. Few people seek out mental health professionals from a personal desire to change their lives. Many more are effectively coerced into evaluation after their bizarre or maladaptive behavior becomes unacceptable to significant others in family or work. Even those who come to therapy of their own volition are rarely seeking change as such. Rather more often, they face an unacceptable level of personal pain and they must either change or die. After entering a therapeutic relationship, many will continue to sabotage change that threatens their personal autonomy.
e. The CMHAP standard should also recognize the spectrum of different stakeholder backgrounds among mental health professionals and delineate the training expected of practitioners as a precondition for certification to treat each condition. This criterion may particularly apply to the assignment of psychiatric or psychological diagnosis labels by physicians who now hold no specific certifications in these fields.
f. I believe that revised teaching curricula may naturally emerge from the development of the CMHAP, just as they have de facto emerged from the DSM. One such curriculum has already been discussed here on DxSummit, and might serve as a predictor for the desired outcomes of the standards development process outlined above.
g. It must also be recognized that money comprises a significant dimension of the changes noted above. The retrenchment and redirection of mental health practice will require sustained yearly investments of Billions of dollars in rigorous field trials to eliminate or limit ineffective treatment protocols and to discover and validate new options. A generation of practitioners must be re-trained in place. As profit-driven organizations, pharmaceutical companies cannot be expected to support this process. Although 3rd-party insurers necessarily have a financial interest in avoiding huge underwriting losses from lawsuits against mental health practitioners, it seems doubtful that they will choose to play a serious role in funding major research or the revision of practice standards in a CMHAP. Given the size of the challenge, government is almost certainly the central effective player in these major changes.
Some mental health practitioners may also shrink from addressing many problems of their own fields, by resort to legal action. To those individuals, I would ask, “What better alternative can you offer that acknowledges the deep pockets of corporations that have a vested interest in continuing frauds they have already perpetrated? Did you really expect these folks to play fair? It ain’t gonna happen!”
Invitation to Comment
No one individual knows all that is pertinent of psychology and psychiatry, much less about the practice of medicine at interfaces shared with mental health concerns. Thus I invite the reasoned comments of others more educated than a layman patient advocate like me. If I’ve got it wrong, then tell us how to put it right. If there’s something missing, then fill in the blanks. Please try not to strain at gnats and swallow camels; if you can’t offer a solution for problems you see in this paper, then think a little longer before you weigh in with general criticism. ”It’s just too hard” is a non-solution from the get-go.
And in the spirit of our starting point …
Lead, follow, or get out of the way.