Where DSM-5 Went Wrong
Lawrence Rubin: I first became familiar with your work around five years ago when I was teaching abnormal psychology. So, I’ll start off by saying that you’ve had a very interesting professional evolution. You were involved in the preparation of the DSM-III series, chaired the DSM-IV task force, but then became a strident critic of its successor, the
DSM-5. Were you as critical of the DSM-III and IV, as you were of 5?
Allen Frances, MD: Well, I worked on the DSM-III, and I was one of the conservative voices trying to restrict the enthusiasm for expanding diagnoses beyond what I thought would be reasonable. I did my best, mostly unsuccessfully to provide the check on what seemed to me to be an ever-expanding diagnostic system. For DSM-IV, we established very high thresholds for making changes. And it turned out that we included only two diagnoses from the 94 that had been submitted to us as suggestions. We told the people working on DSM-IV that they would have to prove with very careful literature, if you used data reanalysis in the field trials, that any change would do more harm than good. And when you have high standards, very few new innovations get included.So, my concern about DSM-5 was that the experts doing it were given just the opposite instructions; to take the diagnostic system more as a blank slate and to be creative.
And if I’ve learned anything during these 40 years I’ve worked on DSM’s, it’s that if anything can be misused, it will be misused, especially if there’s a financial incentive.
And pharma, the big drug companies, have a tremendous financial incentive in making sure that every DSM decision is misused by expansion, so that people who are basically checked well are treated as if they’re sick. They become the best customers for pills. And drug companies have become experts in selling the ill to peddle the pill. So, I was very concerned the DSM-5 would have the negative effect of opening the floodgates even further to what seems to me to be fairly wild diagnosing, excessive use of medication, especially in kids, but also in adults and geriatric populations.
LR: So get as many new diagnoses out there as we can; make money, comport with the drug companies.
AF: I think that’s a misunderstanding. The people doing this were not doing this as an effort to curry favor among the drug companies, although many of them had some connection, a financial connection with pharma. I don’t think that that’s the motivation that lead to the DSM-5 expansions. I think intellectual conflicts of interest are much more important, and much more difficult to control than financial. And the experts in the field are always in the direction of expanding their pet diagnosis. They can always imagine a patient they’ve seen, who couldn’t fit into the existing criteria, and they worried very little about false positives.They were much more concerned about missing a patient, than mislabeling someone who shouldn’t be diagnosed. I think the people working on DSM-5 were honest. I don’t think that they had any inclination to help the drug companies, but their own experiences as experts in the field don’t generalize well to average practice.So, if you’re working as a research psychiatrist on a very exotic condition at a university clinic seeing highly selected patients, having lots of time with every patient, using careful diagnostic instruments, you get an idea about what might make sense. That’s completely inappropriate for primary care practice, where most of the diagnosis is done, and most of the medication is prescribed. I think experts were making decisions that might be reasonable in their own hands, but that would be absolutely dreadful once used widely in general practice.
LR: So, just a seeming disconnect between the researchers in these rarefied atmospheres and those frontline folks seeing people day to day!
AF: Exactly. And I think that this goes for all manifestations; what we see in psychiatry is not at all special to it. That every single branch of medicine has an inherent systematic bias towards overdiagnosis. Recently, the new guidelines on hypertension resulted in something like 40 million additional people being called hypertensive.Guidelines should not be left in the hands of professional associations. They should be done by people who are neutral. And use experts, but don’t allow them to call the final shots
A Diagnosis Should be Written in Pencil
LR: Have you seen any discernible impact of your anti DSM-5 sentiments in the last five years since its publication? Has the field shifted back to listening to some of the concerns that you and others have had in terms of overdiagnosis and lowering thresholds?
AF: Yeah. And again, it’s not just psychiatry. This has been a problem in every single medical and surgical specialty. And there is an increasing chorus of Davids fighting the huge Goliaths. The huge Goliaths in this case are the drug companies and the professional specialty organizations who have vested interest. The medical industrial complex is now a $3 trillion-dollar industry. And it is most profitable when people who are basically well, feel sick, and get treatments they don’t need. And so, its tremendous budgets are expanded by the demand of all medicine in the direction of increasing patienthood and recommending ever more expensive treatments.The Davids fighting this are just a small group of people with very limited budgets, but sometimes right does make for might. And the medical journals in general have become much more aware of overdiagnosis. I’ll be at two meetings this summer, one in Helsinki, and one in Copenhagen, both focused not just on psychiatry, but across medicine and surgery on the topic of overdiagnosis. There’s an institute called the Lown Institute that’s working very hard to promote right care rather than excessive care. And there’s a wonderful initiative called Choosing Wisely, in which the various medical specialties are identifying those areas, where there’s excessive diagnoses and treatment.And I think in psychiatry and psychology, there’s been an increased realization that there are risks to diagnoses as well as benefits. And seeing any individual patient, it’s very important to adapt the general guidelines to that person’s specific situation, and to ensure that a diagnosis will be more helpful than harmful. It’s the easiest thing in the world to give a diagnosis. It only takes a few mindless minutes, and very often diagnoses are given precisely that way. Eighty percent of medication is dispensed in primary care practice, often after visits of less than ten minutes. A diagnosis once given, can have terrible consequences that haunt and last a lifetime.
And so, from my perspective, a diagnosis should be a very particular moment in a patient’s life. It should be, when done well, a very important positive moment.
A good diagnosis leads to feeling understood, to no longer having a sense of confusion and uncertainty about the future. It helps the patient develop, with the doctor or the psychologist a treatment plan that may have a tremendous positive influence on their future. An inaccurate diagnosis carries unnecessary stigma and the likelihood of medication that will do more harm than good. And again, that haunting inability to ever get it erased. Because things evolve over time and people change from week to week, people usually come for help at their worst moment, and how they look at that moment may not be characteristic of their past or predictive of their future. I think it’s crucially important to take diagnosis seriously. A great way of putting this is a diagnosis should be written in pencil.
LR: I like that.
AF: Especially in kids.
On the Diagnosis of Children
LR: It seems that what you’re saying is that there’s this overt and covert attempt to enfeeble consumers. And you’ve written a lot online recently and seem really upset about what’s going on with
children. Research seems to say that one in five are diagnosable, and one in 68 is on the autism spectrum. And you talked about stigma lasting a lifetime. Do you see that this is particularly the case when we hand out diagnoses to kids at very tender ages?
AF: First of all, never believe survey results that say one in X number of kids has the diagnosis. There’s an enormous systematic bias in all epidemiological studies. These are usually done by telephone, or by self-report, and they can never judge clinical significance. So, they’re only screeners that would at best provide an upper limit on the regular diagnosis, never a true rate but they’re not reported that way. And once it gets out, you know, it used to be that 1 in 2,000 or fewer kids had a diagnosis of autism. We changed that. One of the changes in DSM-IV was adding Asperger’s, which did dramatically increase the rate. But we expected the rate to increase by three times, not to go from 1 in 2,000 to 1 in 50, which has happened over the period of these last 20 years.And I think that some of that is identification of people who previously didn’t get the diagnosis and needed it, but a lot of it has to do with wild generalist diagnoses, and survey methods that are very misleading. I think that kids are very changeable, from week to week, and month to month. There are changes in development that are responsive to family stress and school stress, peer pressure. And what happens instead is we have wild overdiagnosis in attention deficit disorder and autism and this is done in a way that doesn’t respect the fact that these are young brains.We don’t know the impact of long term medication on the developing brain. It’s like a public health experiment that’s being done without informed consent. And all the indications for ADHD is that the beneficial results are short term. That academic performance over the long term is not positively impacted. That we should be a lot more cautious, both in diagnosis and in treatment, especially with young kids where diagnosis is so difficult, and where treatment may have negative as well as positive impacts. The most dramatic example of this is attention deficit disorder. There are five studies in different countries with millions of patients – not millions of patients, but millions of kids –and these have found that the best predictor of getting a diagnosis of ADHD and being treated for it with medication is whether you’re the youngest kid in the class. The youngest in the class is almost twice as likely to be diagnosed and treated than the oldest kid, which is clear cut proof positive, slam-bang evidence of overdiagnosis. Their immaturity is being turned into a disease, and kids are being treated with medication for basically just their immaturity. And the fact that the classrooms they’re in are too chaotic, and don’t have enough gym time, and don’t have enough individual attention.
LR: A woman wrote a chapter for one of my books,
Mental Illness in Popular Media, on the use of adenoidectomies and tonsillectomies in the early part of the 20th century to deal with the seeming epidemic of kids who would today be diagnosed with ADHD. There seems to be this history of medicalization of childhood that you’re alluding to, and this perverse need we seem to have to enfeeble kids. And if anything, it seems that it will keep them more dependent, less productive, and less competent than ever before-an unintended side effect.
AF: I was one of the kids, who might have gotten the tonsillectomy.
LR: Me too.
AF: I remember that well. My father said “no, we’re not going to do that,” but the doctor recommended it, and all the kids on the block had gotten tonsillectomies. Medical diagnosis and treatment tends to run in fads. Over the course of history, there have been diagnoses and treatments that have sudden runs of popularity that now seem absurd. And some of our practices today will seem very troubling when looked at in the coming decades.
LR: Do you see Disruptive Mood Dysregulation Disorder (DMDD) as being part of this fad bandwagon? And even though it’s got this fancy name, it’s still considered child bipolar disorder, and that’s really damming.
AF: What happened here was really nuts. There had been suggestions by psychiatrists heavily funded by the drug industry to include the child version of bipolar disorder in DSM-IV. And we rejected those suggestions, fearing that it would lead to a tremendous overdiagnosis of bipolar disorder in kids. Despite our rejection, the diagnosis suddenly became popular, partly because the drug companies finance these guys to go around the country giving conferences and partly because child psychiatrists can sometimes be very gullible. And very young children, even infants were getting antipsychotics for a fake bipolar disorder diagnosed in the early years of life. The field of child psychiatry became concerned about this and wanted to correct it, but the fix in DSM-5 was exactly wrongheaded. What should have been done is a black box, a warning in DSM-5 about the overdiagnosis of childhood bipolar disorder. And the caution that the kids should be seen carefully and over long periods of time, and that they should meet criteria before a diagnosis of bipolar was made.
LR: A black box warning?
AF: There should have been a warning about the dangerous fad. Instead, they substituted a new diagnosis that essentially is childhood temper tantrums, hoping the kids who previously had been mislabeled bipolar would get this lesser diagnosis instead, lesser because it wouldn’t imply the need for mood disorder medications that would imply a lifelong course. But why substitute a new diagnosis for temper tantrums that can be so easily misused.The system tends to accrete, rather than to sunset diagnoses. It tends to always be adding new things, rather than warning about, or eliminating things that are already in the system that may be dangerous. So, parents have to be very well-informed about their kids.
LR: And they’re not.
AF: And the concern often is, if I don’t get my kid a diagnosis, say of
ADHD and medication, he’ll be behind in school. I think parents have to have the opposite concern, as well that the medications are being given out way too loosely, and they need to protect their kids from medication that may not be needed.That said, I get more criticism, from people who feel I defend medication too much. I’m absolutely convinced that medication is useful, when given carefully to the few. That it becomes harmful only when it’s handed out carelessly to the many. And the people who go in either direction, either blindly supporting the use of medication, or blindly opposing it, I think of both as extremist, and they do harm to the real needs of the people. But there will be, and are, a large number of people who need medication and can’t get it, either because of inadequate resources or problems with financing treatment. And we have to worry about the people who are neglected very much. At the same time, we have to be mindful of the fact that we have the paradox of over-treating people, who are basically well, while we’re neglecting those who are really in need and desperately unable to get the treatment that would be helpful for them.
LR: You wrote a blog post titled, “Please empathize with me, doctor!” And from what you’re describing Allen, it seems that we are struggling with a societal empathy deficit disorder. There seems to be a preference for scientizing our relationship with kids and with our patients at the expense of understanding, at the expense of taking the requisite time. And at the really painful expense of not empathizing with these people, who are just going to be tossed into the system with labels and scripts. Empathy deficit disorder, maybe it will be in DSM-VI, or DSM-2.0.
AF: We could use it for our president.
LR: We’ll save that for later.
AF: Actually, the issue goes all the way back to Hippocrates, the father of medicine 2,500 years ago.
But First, Do No Harm
LR: Do no harm.
AF: Do no harm. He also said that
it’s more important to know the patient who has the disease, than the disease the patient has. I don’t trust clinicians who only do DSM check lists. They don’t know the patient. I don’t trust clinicians who don’t know DSM and do free-floating evaluations that don’t take into account the ways that the individual may have a problem that’s been well described and has a set of guidelines that will be very helpful. I think that every clinical encounter needs to be a combination of close person-to-person collaboration, that the DSM guideline should never be applied blindly to each individual because they vary within themselves. It has to be customized for that particular person’s own situation. At the same time, not knowing the DSM diagnoses is likely to result in missing things that would be crucially important in treatment planning.
LR: False negatives.
AF: Good interviewers are people who are able to form great relationships with their patients, work collaboratively in understanding the diagnosis and planning a treatment and able to use the DSM without worshiping it.
LR: It seems that what’s needed, as you say is more time, a deeper understanding and a reluctance to jump into a diagnosis. This seems antithetical to the way that psychiatry and even psychology are practiced today. And clinicians are under more and more pressure to assign a rapid diagnosis and develop a treatment plan within the first session or two. What advice do you have for clinicians who are under this type of pressure, and may not have the luxury of flexibility and time that we know is necessary?
AF: Well, first-off, the system is crazy. Insurance companies do this because they think it will restrict costs, but it has the perverse effect of forcing people to make premature decisions that often will result in more costly treatment. Giving a person a medication is likely to create a commitment to see that patient over a long period of time. Diagnosis can increase the lifelong cost of taking care of that person. If the insurance companies gave more time for evaluation, many, many of the problems that get a diagnosis and long-term treatment would pretty much go away on their own with time and simple advice.The system is counterproductive; the more time we spend upfront with people in the evaluation process, before diagnosis and before treatment, the fewer diagnoses will be necessary, the less lifetime treatment will be needed. And it will actually be much more cost effective to give people time to get to know the situation at the beginning. I think for practitioners, it’s important always to underdiagnose. That it’s crucial to first of all rule out the possible role of medication and symptoms. You know, very often, hundreds and hundreds of times in my career, new symptoms have been due to medication.
LR: Iatrogenic?
AF: The average person over 60 to 65 is taking five, six, seven pills. Recent studies showed how many of them have
depression and
anxiety as side effects. And the older people particularly are less able to clear medications. So, you have a combination of a bunch of medications that can cause side effects, and a person not being able to clear those medications. And new symptoms are often treated with yet another medication, rather than realizing it’s a side effect. I think that it’s important to rule out medications. It’s important to rule out substances. It’s important to rule out medical problems. That has to be done during the first sessions. I think that’s crucial. But beyond that, I think it’s important not to jump to lifelong diagnoses based on very limited information. And to tend, at the beginning at least, to normalize, rather than to pathologize the situation.We see people on the worst days of their lives and tend to draw conclusions about them. And their futures are often inaccurate. They look very different days and weeks later.
Mind, Body or Both
LR: How can the average psychotherapist develop a healthier relationship with the biopsychosocial model? I know you said, you have to look for
substance abuse. You have to look at the iatrogenic effects of medication. You have to look at the psychotropics that they’re on. So, how does the average psychotherapist, who is not particularly savvy when it comes to psychotropics, really have a full biopsychosocial understanding of these complex organisms that are people?
AF: I think one of the great losses over time has been the biopsychosocial model, particularly because of the mindless warring between people who have narrow views that are biological, or just psychological, or just social. I think that it’s impossible to understand the complexities of human nature and of how we function and dysfunction without taking into account the biological, the psychological, and the social, and sometimes there’s spiritual issues that people come with. And I think it’s just as important that psychiatrists be good psychotherapists and understand the way that social pressures result in symptoms. And it’s equally important that psychologists understand diagnosis and also the use of medication. Even if you’re not prescribing it, it’s very important to understand when to and when not to use medication. If for no other reason, to make sure the patient’s not getting too much medication, as well as knowing when to refer. I think every clinician needs to be complete. I don’t think that training in one discipline gives permission not to be aware of the tools that are available more widely across disciplines.
LR: Do you think there’s such a thing as a psychosocial reductionism? I know there’s biomedical reductionism. Do you see a danger at the other end of the extreme, of psychosocial reductionism?
AF: Oh, definitely. Psychosocial reductionism, yeah, it’s alive and well, particularly in Britain where there’s an ongoing back and forth. An active segment of British psychologists has taken a pretty radical view that psychosis is on a continuum with normal. That biological elements have been way over-emphasized in schizophrenia. And that most of the problems patients present have to do with childhood trauma. And again, every point of view has value, but no one point of view is necessary and sufficient.
LR: There are many truths. There’s just as much psychosocial reductionism as there is biological reductionism in many of these debates. You know, talking about biomedical and psychosocial reductionism, I remember when, around the time that DSM-5 came out, NIMH really took a stand and said, “Yeah, nice work boys and girls, but we’re going to pretty much move to the
RDoC.” A lot of psychotherapists practicing day to day, who don’t work in academia, don’t read a lot of the scholarly journals, don’t have the bloodiest idea of what the Research Domain Criteria is. Do you see that system as useful or valid? Specifically, how useful do you see it in alleviating some of these ills of overdiagnosis and wrongheaded treatment?
AF: Well, the DSM had tremendous promise as a research tool, but it’s failed in that the complexities of brain functioning, of genetics, have been so enormous, the more we learn, the more we realize how little we understand.The brain is the most complicated thing in the known universe. It reveals it secrets very slowly. And it turns out that there are hundreds of genes involved in schizophrenia and every other psychiatric disorder, not just a few. And all of the neuroscience research has been remarkably productive. One of the great intellectual adventures of our time is the research that’s been done on how the brain works; however it hasn’t helped a single patient!
I think we have to be aware of the fact that there are no low-hanging fruits. That we’re not going to have breakthroughs that will explain schizophrenia or bipolar disorder. That each of these conditions is probably hundreds of thousands of different conditions that share some clinical features, but probably have very different biological underpinnings. And we shouldn’t be so dazzled by the science that we lose track of taking care of real patients in the present. I think there’s so much promise, so many high promises in the future, and our NIMH budget is being spent almost exclusively on basic science research, almost not at all on clinical research, that we’re ignoring the needs of patient today.
To me, it’s a tragedy that we have 350,000 patients in prisons, and 250,000 homeless on the street that we’re taking minimal care of, we’re neglecting people desperately in need. And that most of the research has its head in the air trying to find out things that maybe are going to be helpful to a tiny percentage of patients in the future. Meanwhile, we know how to take care of people now, we’re just not doing it.
We’re not making the investment in community treatment, housing, recovery programs, that would be necessary to eliminate the shame on our country. Almost every other developed country takes much better care of their mentally ill than we do. The U.S. is the worst place in the country to be severely ill. And it’s not a matter of neuroscience or science in general, it’s just the common sense, practical taking care of people and treating them as citizens, not neglecting them. And what we do in this country is provide almost no funding for community treatment and support
LR: It goes back to this idea of empathy deficit disorder. You talk about science, I like the point you make about the RDoC. That it’s a magnificent academic tool, but maybe in the year 2635, we’ll find a gene for some component of bipolar disorder, but how many people are going to struggle and lose their lives before that?
AF: And I don’t think we will find the gene. I think what we’ll find, it’s like breast cancer, we’ll find that there are certain genes predisposed in a very small percentage of the people who have the disorder. And that’s the complexity. There’s a paper that came out that had 250 authors that found 105 genes for schizophrenia, each of them a tiny bit different than normal. And the permutations and combinations of those genes would be astronomical. What that says is that the complexity of these disorders is so great that there will be no simple answers. In the meantime, we shouldn’t be allowing people to not have treatment and not have housing and to wind up in jail. And the resources, the techniques, the ways of preventing this, of making our country less of a shameful outlier in how we treat the mentally ill are perfectly obvious, it’s just a matter of funding and political will. And the severely mentally ill are the most disadvantaged, the most vulnerable population in our country.
It is the Relationship That Heals
LR: I find a bizarre paradox in all this. When I think of psychosocial treatment, I think of the amount of money, time, resources, the human capital, that’s being spent to develop these empirically supported treatments, and ultimately you end up with cognitive behavior therapy at the top of the heap. There seems to be this manic pull in psychology and psychotherapy to develop empirically supported treatments, which many argue take the heart and soul out of the human connection, out of psychotherapy. Do you have any thoughts about this scientific perversion and how it’s affected the field of, and the practice of psychotherapy?
AF: I don’t think it’s so much scientific perversion. I think it’s economic pressures; that every therapy wants to gain a list of insurance companies who will pay for it. And this leads to a kind of competition to prove that your work is validated. I’ve been following this field now for 40 years. I was on the NIMH committee that used to fund psychotherapy projects that no longer exist, of course, because of NIMH’s current focus on the brain. But the overwhelming finding in the literature is that all of – this is a paper that was published 40 years ago by Lester Luborsky – all have run, all have won, and all deserve prizes. That all psychotherapies can be helpful. More of the outcome, of the variance in outcomes is returned by the therapist through a client
relationship, than it is by specific techniques. That it’s kind of silly to have a competition amongst therapy techniques because all are necessary.I think to be a therapist, you should be well-versed in every single type of therapy, because patients vary between, and also even within themselves and what they need in a given moment. And it’s not as if one, as if cognitive techniques are inherently better than techniques that focus on psychology or the social situation. Different techniques are going to be different at different moments. And the technique in general is useful only in the context of a relationship that’s nurturing and healing. And the most important thing in the healing of psychotherapy is probably the nature of the relationship, and the need for a personal match between the two people. I think that it’s been an unfortunate – there’s been an unfortunate tendency to develop competitions. Competitions between medications versus psychosocial approaches. Competitions among the various psychotherapy techniques.A really well-rounded clinician has to be good at everything, and especially has to be good at relating to the people that they’re trying to treat.
LR: I have to tell you Allen, it’s refreshing to hear a medical man, a psychiatrist in particular, especially one who is that connected to the history of the DSM know about the Dodo effect, and to really appreciate that. So, you have the average therapist working in the average practice in a community mental health center, maybe even in a homeless shelter, recognizing that the technique is not nearly as important as the relationship. And then they come across a client, who seems psychotic in the moment, or seems to have a history from limited information of bipolar disorder or schizophrenia, and their knee-jerk reaction may be “I have to get this person to a psychiatrist. I have to find out what’s medically wrong with them.” What does that average line worker do, knowing in their heart that their relationship is critical, but that they have this biomedical pressure to refer to a psychiatrist, or even a primary care physician?
AF: Well, I think everything is important. You mentioned primary care physicians. People with schizophrenia die 20 years earlier than the rest of the population. And that gulf has increased in recent years and is much higher in the U.S. than it is in other country, because we neglect the people so much. There isn’t one answer.
Taking it to the Streets
There’s not one size fits all. And there isn’t one answer to people who have tremendous problems at every level. I mean, the first thing with a homeless person might be sharing some orange juice. It’s forming a relationship. It’s finding out a way where they can have housing. It’s not as if the answer to our blanket neglect is going to be getting an appointment once a month with the psychiatrist and getting a pill. That may be a necessary part of the plan, but certainly won’t be sufficient.
Los Angeles is now embarking on what may be the most encouraging experiment in taking care of the severely mentally ill that I’ve seen in this country in the least 40 years. It will be an approach that will be actually a combination of getting out to where the people are who need help, figuring out what they want, and helping them get it. You know, maybe the first step is providing showers, and a welcoming environment, and a place to have lunch. And the housing is going to be probably more important than treatment.
If you can’t get someone a decent place to live, the rest of the treatment is going to be very hard to carry out.
We have to figure out a way of getting the patients out of prisons and getting the people on the street into decent places to live. We had all of this until the Reagan Administration in 1980. The community mental health centers and housing were an increasing and exciting part of the care. We led the world in the ‘60s and ‘70s, in trying to devise community treatments. And now we are at the very bottom of the pack, one of the most heartless places in the world. One of the worst places in the world if you’re mentally ill. It’s not going to be a solution that takes into account just one need. It’s going to have to be a kind of total approach that includes the police, the sheriffs, the prisons, the district attorneys, the judges and the politicians. And that’s exactly what’s happening now in Los Angeles, and that may serve hopefully as a model for the rest of the country.
LR: As a psychotherapist, I listen to the inflections and the changing tone in your voice. And there’s such enthusiasm and energy when you talk about all that can be. And there’s a discernible lilt in your voice, almost a down-turning in your overall demeanor when you talk about the way things are.
AF: I think one of the things that’s crucially important to understand is that the symptoms we see in the very ill aren’t necessarily inherent to their condition, but rather maybe a reaction to the social context in which they’re living. The example 60 years ago was we kept people warehoused in terrible snake pit state hospitals. And the observation was that the hospitals were making them sicker, because of the social neglect within in. What’s happening now in the United States is that by neglecting people and leaving them without treatment and without housing on the street, we see much sicker patients here than in other countries that provide better care.So, the paradigm of good care here is Trieste. And I’ve heard over many years, how wonderful the Trieste system was in treating the severely ill, without hospitals, without restraint, and with minimal medication, but not the high doses and multiple medicines that are given in the United States. And I never believed it until I visited. And now I’ve been there three times over the last five years, and it’s an absolute miracle. Trieste takes good care of the people with severe mental illness and treats them like citizens. It has social clubs for them and a career path. The Trieste Mental Health System runs two hotels, five cafes, a car service, and a landscaping business, so that people who start out as patients, wind up working in the system. They have housing. They take good care, and they treat people with respect. And their patients are a lot less sick than ours.They just don’t get to the levels of psychopathology that we see in this country because there’s such neglect along the way. And the message in this is, treating the casualties, the train wrecks, is a lot more expensive and heart breaking than doing the right thing at the right time, earlier in the course before the illness progresses. I think there is a tremendous shame as a civilization that what we’ve done is fail to provide.
Ever since the Reagan Administration, we’ve failed to provide community housing and community treatment, rehab, and recovery. And instead we hospitalize hundreds of thousands of individuals in prison. We’ve imprisoned hundreds of thousands of individuals, who should be in community programs, and maybe very occasional inpatient stays. We see them on the street every day and I just pass them by. My hope is that Los Angeles will be a beacon that things can be different.
LR: Is the Trieste system similar to L’Arche?
AF: It actually started in the ‘60s, with the closing of the large mental hospitals in Italy. And the system is based on the idea that everyone can be helped, everyone’s a citizen, everyone deserves respect, and that the community funds adequate social programs and treatment programs, and housing programs, and job programs. And they make the assumption that each person can be a useful citizen in the community. And when people get sick, instead of throwing them in a hospital and keeping them there for a long time or throwing them into prison which is what we do, or instead of keeping them on the street, there is tremendous concern for them and individual attention for them in figuring out a way back to health. And it just works. It’s miraculous. And people don’t ever get as sick as the people we see on the streets and in our prisons and our emergency rooms, because they’re treated with respect and care.
Reaganomics and Mental Health Care
LR: What do you think happened back in the Reagan era that directed us away from compassion, and away from potential? What happened?
AF: I mean, it’s very clear, this history couldn’t be more explicit and disheartening. The Kennedy Family, because they had mistreated one of their family members, had a huge personal interest in this themselves. In the ‘60s, there was the first use of medications to help people who were previously hospitalized to live in the community. And there was a bill, the Community Mental Health Center Bill that established all across America, the notion that we could help the individuals better in the community than by warehousing them in state hospitals. The money was meant to come from the state hospitals, so it seemed like and was a tremendously cost-effective transformation that we would close the state hospitals, and instead spend the money on community services and housing. And with the provision the medication people could be managed, creating for them to live much better lives outside of hospitals than within, and it would be cheaper.All of this was working. I worked in places in the ‘60s and early ‘70s that were quite remarkable in helping people find new lives outside the hospital. What Reagan did in the ‘80s was to send block grants, and this should sound familiar because it’s exactly what Trump wants to be doing now. Instead of providing federal support for these programs, Reagan said we’ll take this money and send it back to the states and them let them spend it the way they want to spend it. And what the states did almost uniformly was either use the money to reduce taxes, or use the money for other priorities or general funds. And the community mental health centers were gradually defunded and privatized. And private systems will never take care of the severely ill, because they’re expensive to take care of. So, the community mental health centers that survived, did so by restricting themselves to healthier patients, who had more money and fewer needs.And some went out of business altogether, some switched into behavioral health centers, treating people who were much healthier and neglecting those who were really ill. So, what we did in the ‘80s was destroy what in the ‘60s and ‘70s was the most innovative and one of the most effective [community mental health] systems in the world. The rest of the world continued to care for the mentally ill in a much more humane way, and it gets much, much better results. And the paradox in the states was that with the closing of the community mental health centers, many of the individuals untreated on the street committed petty crimes and sometimes not so petty crimes that resulted in their being in prison. And we’ve had this tremendous increase in the number of prison beds so that the LA County Jail is the biggest psychiatric facility in America. And in many states, the biggest psychiatric facility is now a prison. That the money that should have been spent on community treatment that had been spent on snake pit hospitals is now spent on prisons, and there’s kind of prison industrial complex that keeps that going.
LR: So, it’s a reactionary swing back to the early part of the 20th Century, when criminals and the mentally ill were merged. And a misappropriation of funds.The Republican agenda to decentralize the federal government, combined with various historical, sociological and financial factors, and these poor people were and are just caught in the crosshairs.
AF: Yeah, until the early 1800s, psychiatric patients were criminalized, along with prisoners and the poor in horrible facilities. The father of psychiatry is Pinel. And in the early 1800s, he freed the patients from the chains, treated them like decent human beings and citizens, and got remarkable results. And that led to the state hospital movement which was originally a positive movement…
LR: A community.
AF: Yeah, gave people a place to live and work. And they usually had farms, they had workshops. And it was only if these became overcrowded in the early parts of the 20th Century, that they turned into snake pits and asylums. That led to the deinstitutionalization movement that began in the late ‘50s and early ‘60s. And it led to a community mental health center movement that was really quite encouraging and effective in the ‘60s, ‘70s, and early ‘80s. And that was pretty much destroyed from the mid ‘80s on. And at this point, we have very few effective community mental health center initiatives in our country, and we have lots of prisons treating the mentally ill, and the mentally ill on street corners in all the major cities.
LR: A reactionary swing back to the past.
AF: Privatization doesn’t work. I mean, if we’ve learned anything about healthcare, mental healthcare, and healthcare in general, it is that a for-profit system will result in way too much treatment for people who don’t need it, and way too little treatment for the people who do.
LR: So, we need psychotherapists out there as social workers more or less. Maybe more training at the graduate level, at least in psychology and counseling in the direction of community mental health and social advocacy.
AF: In all of the mental health fields, there’s been way too much attention to treating the easy patient and the well-paying patient, and way too little of taking care of the people, who really need our help. And I think that the most wonderful experiences of my life have been the saves of people who seem to be beyond saving. And anyone can treat someone who doesn’t really need treatment.
LR: Right.
AF: We should be trying to focus our attention on those who really need us.
The Twilight of American Sanity
LR: We’re sort of winding down and I wanted to ask about this irrepressible current in you…about the impetus for writing
Twilight of American Sanity: A Psychiatrist Analyzes the Age of Trump, and what you think is going on in government and in our society? I see Trump as a symptom rather than the disease, but would you mind talking about what you think is going on, from a psychiatric, psychological point of view?
AF: I started writing the book well before Trump began running for office. I’m concerned for my children and grandchildren, and the future generations more generally, about the fact that our society was delusional in ignoring global warming, overpopulation and resource depletion. And a bunch of other problems that are so obvious and common sense just sliding right by, as if we can hand on to the next generation a world that’s degraded and dangerous. And so that was before Trump. Trump is a mirror to our soul and the reflection ain’t pretty.And he is a symptom, not the cause, but he’s certainly making the disease much worse. I think there has never been a threat to American democracy like this one since 1860. And this election, this midterm election is to me the third most consequential election in the history of our country, the other two being 1860 with Lincoln’s election, and 1932 with Roosevelt. I think that Trump is a direct danger to our democracy. His attack on the free press, on the court systems, on the institutional checks and balances is not a joke. And that at this point, the sides are fixed. I don’t think either side is going to give into the others. And I think the crucial thing will be the vote, getting out the vote. And anyone who cares about this country, and cares about – I think that Trump could be responsible for more deaths in the next century than Hitler or Stalin and Mao combined. I think global warming is an existential threat to our species. And that we don’t know where the tipping point is, but we’re likely approaching it without taking out an insurance policy.People in their individual lives have insurance policies even though they don’t expect to die tomorrow, or have a fire, or an accident, you just protect the future. And we’re tripping over the cliff of global warming without taking an insurance policy for our kids and grandkids, that the world will be livable for them. I feel a sense of despair if our country is not able to right itself. And it was a wonderful thing that we were able to elect a black president ten years ago. It will be a much worse horrible terrifying future if at this point we re-elect the people who have been willing to give Trump such a wide leeway in destroying our country and our world.
LR: Well said. I think that we have a responsibility as therapists, as mental health clinicians to be aware of what’s going on because many of our clients are the day-to-day recipients of some of the changes in policy that are being created. I think psychologist, psychotherapists, psychiatrists, need to be politically aware without becoming politically depressed.
AF: I think it’s important not to be psychologically name-calling Trump. Thinking of Trump as crazy, tremendously underestimates his evil and cunning. We have to fight Trump with political tools, not with psychological tools. I think as therapists, we need to help most of our patients – I think you can’t politicize treatment.And so, a good therapist should be able to treat someone who is a Trumpists and should not try to get into political discussions with their clients and patients. I think as citizens, it’s an important thing for every therapist who cares about the social safety net of our country. The biggest factors with mental illness don’t come from within psychology and psychiatry. The biggest factors of mental illness come from social forces.Inequality or poverty are tremendous drivers of mental illness. I think it’s a responsibility for therapists to be political, not in calling Trump names but rather in getting out the vote. There’s the Kansas thing and getting their friends to register, getting their family members to register. Because I think everything has to do at this point with the numbers of people who show up in November. And I think there may be some therapists who support Trump, it’s hard to imagine, but by and large, most therapists and most people they know will be on the side of trying to protect democracy and protect our environment. And so, I think the most important thing a therapist can do at this point is to help get out the vote.
LR: Do you think mental health treatment and funding for mental health at the community level is in danger, with this and similar administrations?
AF: Oh, yeah, Trump recently, yesterday, there was a news report that what the Republicans are going to try to do to cut Obamacare is to cut out the [mental health] parity elements in plans.
LR: All that work! All that work!
AF: And the Medicaid funding of the original Trumpcare bills was to do block grants, rather than to be supporting mental health, which is exactly what Reagan did.Our patients are being targeted by the irresponsible GOP Congress and by Trump.
LR: We don’t want to end this conversation on a depressing note.
AF: Well, the good news is that things are flexible, and that ten years ago we elected a black president, two years ago we elected a black-hearted president. And the country is fickle, and things are very much in the balance. And it is conceivable to me that we’re heading down the drain to a fascist autocracy. And billions of people dying in global warming in the next century. It’s also conceivable to me that there are fixers, and that this is a temporary worst moment and things have to look better. And really, I think it’s in the hands of who votes in November.
The Relationship is All
LR: I guess this is sort of a summary question – if you were to look back and advise a younger Allen Frances, what advice would you have given him early on his career that might have changed his direction, or are you pretty content the way it’s played out?
AF: It played out mostly by accident, and then it’s just doing your job. I don’t think that there’s – I think, there’s actually one advice to people; it’s listening to the clients/patients you’re working with and learn from them.
LR: They’re our best teachers if we let them.
AF: And be yourself. You can learn everything, but also be yourself.
LR: It’s refreshing, again coming from a psychiatrist, just on a personal note, my brother is a psychiatrist, retiring at the end of this month after 40 years. He’s cleaning up his slate of 350 patients. And I wonder what it will be like for him as he looks back on his career. How many did he help, and which ones stand out. Do you have any one particular client story that inspires you?
AF: I think this is the most telling thing, and this might be helpful to people. That I’ve treated people for 14 years and had no impact on their lives. I’ve worked in emergency rooms my whole career. And I’ve seen people for five minutes and they’d come back years later and said, you said that and it changed my life. You never know when what you say may have a tremendous impact on someone. And so, every contact with every person you see, at every moment, you should be thinking about what can I say that may make a difference. And if you treat people as humans, then every moment can be potentially impactful, not every pill, not every symptom, not every diagnosis. I guess the core message in our conversation has been that you really have to focus on the person.I mean, the two words that have had the most impact on people that I remember over the years is “do it,” because people would come in concerned, should I do this, or should I do that? I just say “do it.” And somehow at that moment it crystallized their energy and their motivation to do something that they wanted to do. We shouldn’t be shy in trying to figure out what it is that might help someone do something they couldn’t do.The relationship is all.
