Why science won't improve mental illness treatment

Science made tremendous strides in treating mental illness in the years between 1800 and the 1930.  As Edward Shorter points out in his "A History of Psychiatry" perhaps the greatest challenge of 19th century psychiatry was neuro-syphilis.  Nobody treats neuro-syphilis today with talk therapy or anti-psychotic medications because we know what causes it.  In the developed world syphilis is treated with anti-biotics before it ever destroys a person's nerves and brain.  But the days of simple cures for debilitating mental illnesses are over for the foreseeable future, though, for obvious reasons, people wish it weren't so.  

Marvin Ross wrote a piece about evidence-based medicine versus alternative medicine in mental health care titled "The Only Thing That Will Improve Mental Illness Treatment is Science."  Like Mr. Ross, I am opposed to using public money for treatments that not only lack a base of evidence showing their efficacy but have been shown to have no benefit.  But I am also opposed to huge investment in research when known, effective treatments go begging hat in hand.  There are plenty of things that we know help people who are mentally ill to live healthier, safer, happier lives.  These are treatments that have been demonstrated to be effective in study after study; stable supported housing, case management, regular follow-up, early intervention for psychosis, psycho-education and, in some cases, talk therapy.  As a society we don't do them.  In fact, in most places in North America government is pulling away from offering these services at taxpayer expense. 

If there is a limited pie of government money to be spent on the mentally ill, why do we persist in spending it to look for a magic bullet that will cure schizophrenia or autism or Alzheimer's when for the same money we could treat these diseases mitigating a lot of the worst effects of the illness?  In the last forty years with all the billions of dollars in tax breaks and subsidies that has been spent on brain research there has been no significant clinical advance on the treatment of these diseases -- despite hundreds of breathless reports that a cure is just over the horizon.  If you want to look for magical, non-evidence-based practices, spending public dollars on neuroscience in the hopes of an imminent cure for serious mental illness is akin to using Reiki to treat a broken leg. 

I think there are several reasons we persist in this way of doing things. One relates directly to the rise of alternative medicine.  Both Reiki and neuroscience journalism about fantastic breakthroughs in neurotransmitters appeal to a similar human impulse; the desire for a comprehensive and elegant solution to complex problems.  But the low-hanging fruit of scientific discovery has been plucked already.  Science has become so arcane that Clarke's rule that 'any sufficiently advanced technology is indistinguishable from magic' is true of most science today for most people.  We may believe that we understand how our cellphones work but I am guessing that most non-scientists would have a hard time being able to say clearly where the limits of science (eg. the dubious theory that imbalances of neurotransmitters cause mental illness) leave off and where the limits of magic (homeopathy's dubious claims that microscopic amounts of certain natural occurring substances can treat imbalances in your body's chemistry) take up.  Add to this the hiddenness of science which is increasingly conducted behind paywalls and the result is that most people have as strong a sense as ever that "scientific" means whatever a person in a white lab coat says and the only choice is whether to swallow it whole or reject it. 

The other factor that is stopping us from treating mental illness as it should be treated is the fact that people don't get fabulously wealthy by giving home follow-up and nursing and psychotherapy and regular injections to the mentally ill.  If reimbursed properly, a lot of people might live good lives working in these areas.  Nurses and social workers, clinical psychologists and psychiatrists put more of the money they make back into the economy than executives and board members of pharmaceutical and medical tech companies.  I am not convinced that we need to choose between good research in neuroscience and effective high quality treatment of the mentally ill.  But spending on treating mental illness in the ways that we know work well is a much better investment as a society than chasing the unicorn of a single molecule to cure schizophrenia and incidentally make a few people fabulously rich.

Science can't fix our culture's obsession with quick fixes or our bent ideas about money and mental health.  It is our collective responsibility to demand that public dollars be used where they will most benefit the mentally ill.  That isn't Reiki but it also isn't putting college students into MRIs and asking them to read Jane Austen and saying you're looking for a cure to autism. 

Am I crazy?

Roz Chast's  Big Egg Lady.  To see more of Chasts's eggs click on the image

Roz Chast's Big Egg Lady.  To see more of Chasts's eggs click on the image

"Do you think that you might be crazy?"  It is one of those impolite questions that I get to ask that makes being a therapist fun and rewarding.  When people come in to see me they are sometimes half-convinced that they are crazy.  Sometimes people confuse the intervention with the malady.  Smart people can have the unexamined belief that "If I take the pill, if I see the therapist that means that I am crazy."  Recently, I've started asking more.  A lot of people who come to see me are.  Worried, that is.  I guess whether they are crazy or not depends on what you mean. 

People who have a personal or family history of mental illness are often very worried about being crazy, sometimes terrified.  They may have a very particular idea of what mental illness looks like and be terrified that that's what's in store for them.  Other people come in with a fear that is augmented -- with lots of good intentions and some greed -- by attempts to broaden people's picture of who can experience mental illness.  On the one hand, attempts to destigmatize people with mental illness are laudable.  On the other hand, hyper-sensitizing people to mental illness, encouraging them to view themselves and everyone around them as psychological orchids who need specialized interventions simply to survive in the world, is IMHO, plainly nonsensical, inimical to good mental health and partly motivated by the desire to sell us stuff (medicines or other therapies) that we don't really need

I recently saw a woman who is a new immigrant to Canada.  She is having difficulty learning French and is a new mother.  She felt stressed, scared, overwhelmed, sad and very lonely.  She had been prescribed anti-depressants and an anti-psychotic for sleep (the practice of GPs prescribing anti-psychotics off label without the simplest discussion of sleep hygiene is troubling to me).  On top of everything that was going on in her life she was terrified that she was crazy.  The persistency and intensity of the feelings, a family history of mental illness, her sense that she should be able to get over them and probably the fact that she had been prescribed medication all fed into her sense that she was going crazy.  This is not to say that the anti-depressant was not appropriate.  But it had a powerful meaning for her.  When I asked if she was worried she was going crazy, she began to sob.  She is scared to pick up her French classes again or try to find a job because she views herself as too anxious to take on anything new.  She is becoming more isolated.  I asked her if seeing me was going to make her think she was crazy because I did not think she was and I did not want to do anything that would give her that idea.  If coming to see me would make her think she was crazy I would refuse to see her.  Why?  Because viewing herself as crazy was making her crazy(-er). 

People have all sorts of ideas about what being crazy might look like and what it would mean.  I saw a young woman the other day who wanted to know if she had Borderline Personality Disorder.  First, I told her that I am not a doctor and I can't make a diagnosis.  Then I asked her what it would mean if she did have it.  She felt like then doctors would have some direction about how to treat her so that all the stuff that wasn't working in her life would get better.  "And what if you are sad and lonely because important people in your life have been hurtful towards you for a long time?  What would that mean?"  "Then I'm just a screw up."  Crazy might be better than the alternative; the frightening responsibilities of sanity. 

It probably isn't very wise of me to admit this but I use the term crazy in my own head sometimes when I think about clients.  Usually what I think is, "What a crazy thing to do."  It means something like 'inexplicable and self-defeating'.  In other words "Human."  One thing I don't mean is "mentally ill."  Mental illness to me means something is going on in the person's mind that is far beyond the usual degree of human irrational, self-destructive behaviour.  I think what my clients worry about -- or sometimes even long for -- is being far beyond the human pale, unable to return, irreparably psychologically destroyed. 

Resilient is the opposite of crazy in that sense.  Child birth is messy, it is occasionally very dangerous.  But our survival as a species up until the 20th century is incontrovertible proof that it can usually be done outside of a hospital.  Similarly, the fact that humans are around at all is proof that we are well-equipped psychologically to deal with hard stuff, to suffer, to hurt,  and be hurt even to go crazy and to recover. 

I am glad to live in an age of medicine.  I believe in therapy.  Part of resiliency is having people around who can help you.  But therapists also need to remember to 'first, do no harm'.  And if the cure is worse than the malady then it's no cure.  

Is 'crazy' an illness?

I have been working in an inpatient psychiatric ward in a hospital for almost a year.  It has been sad and joyful and sometimes boring or infuriating and full of discovery and very occasionally frightening.  Before February, the last time I had been in an inpatient psychiatric facility was twenty years ago when I was a social work student at Columbia and I went on a visit to Ward's Island in New York.  In between, I viewed inpatient psychiatry as the place where people who were 'truly mentally ill' were treated.  By contrast, the people I worked with, people who were not in hospital beds, didn't seem ill in the same way that someone who is diabetic or has cancer is ill.  Of course, I would speak of mental illness when I talked about moderate depression or anxiety or Asperger's syndrome.  There are good reasons for this.  I have always believed that a person's biology is intertwined with how his or her mind works.  The things for which people seek the help of a therapist or a social worker are impacted by their brain chemistry, their genes, in short the organism in which the mind arises.  And almost everyone finds having a mental illness -- a biological condition -- less shameful and frightening than being labeled crazy. 

But I was never fully convinced that these conditions were illnesses like physical illnesses, either.  I am not a doctor and perhaps my layperson's lingering idea of illness -- a microbe from without setting to work to destroy tissues -- is part of the reason I have resisted the description of these conditions as mental illness (most types of cancers and diabetes do not meet this definition of illness).  Still, I imagined that behind the doors of a psychiatric ward there were examples of mental illness that clearly demonstrated a causal connection, while yet poorly understood, between disorders of the mind and the physical organism. 

I feel like my ideas about mental illness have been made more confused not more clear by working with people whose minds are so disordered they need to be in hospital.  I sat in the hospital hallway with a man who positively knew that someone was breaking into his brother's home hundreds of miles away.  When I asked him how he knew, he could not give any answer except that he knew.  The fact that his idea made no sense to others or to himself did not diminish its intensity.  But it saddened him deeply; he understood -- at least in part -- that this thought was nonsensical, yet it was absolutely real for him.  It seemed to me, at that moment, that something biological was clearly going on, as if this man had suffered a brain injury and it was only a matter of time before medical science could discover where exactly it was located and how he might be helped.  I imagine that almost everyone who has worked with people with schizophrenia must have had this experience and yet the causes of schizophrenia remain unknown after a century of research, and treatment is focused on symptom management.  This man has lived much of his adult life absolutely bubbling with paranoid ideas and the accompanying sadness and frustration of not understanding where these ideas come from. 

There are people who come into hospital deformed by love.  There are the suicide attempts and the severe depressive episodes brought about by failed or elusive love.  Occasionally people with no previous history of mental illness come to emergency manic and delusional because love has gone wrong.  On the one hand this is the most easy form of disturbance to extrapolate from for most people; everyone has experienced heartbreak or rejection and can imagine him or herself driven to extremes by love.  But it is precisely this universality that makes those who end up in psychiatry unusual.  After all, what makes one person see his love everywhere, believe she is sending him messages through strangers, chase her barefoot all over the city and fight with police and security guards, when nine hundred and ninety-nine other rejected suitors cry, listen to sad music and then move on?  Is that the difference between health and illness?  Or is it something else? 

In the hospital psychiatry ward you can find people who just about everyone would agree are ill.  Even though no one can explain exactly the mechanism, it seems that their biology is making their minds work very differently from the minds of most people and often in ways that feel awful to them and put them in danger.  But mental illness of this unmistakable type is a I-know-it-when-I-see-it kind of phenomenon because for every clear-cut case there are people who are odd or sad or exuberant who fall in a grey zone. 

None of the disorders treated by psychiatry today have a blood test or pathology lab test for diagnosis.  They are all diagnosed by symptoms and reading symptoms remains quite subjective. 

How we think about disorders of the mind has a real impact.  One of the most powerful impacts is the use of drugs to treat mental disorders to the exclusion of talk therapy.  Thankfully we have left behind the era of  psychoanalysis to treat schizophrenics (as well as  cruel theories about how schizophrenia was caused by bad mothering).  But now we have moved to a situation where -- in Quebec, anyway -- talk therapy is almost never viewed as a way to treat mental illness despite its proven effectiveness for many -- though not all -- disorders.  People discharged from hospital for surgery can get physio and occupational therapy to help with recovery as part of the services covered under their provincial health insurance.  Psychotherapy is almost impossible to get in the public system either in hospital or out.  I think that this is partly a function of not viewing talk therapy as a way to address a medical illness.  How can an illness be treated by talking?  As much as disorders of the mind may not look like illnesses, talk therapy doesn't look like medicine.  Not to patients and not to doctors and certainly not to ministers of health.

Here is a story that illustrates the constraints of operating solely with a illness/health model of the mind.  A man in his late forties was brought into hospital for running around in traffic.  He was a chronic schizophrenic.  How did we know?  Because that was his diagnosis for many years.  It was also possible that he had a mild intellectual handicap.  Doctors over the years had examined him and observed symptoms that pointed to these conclusions.  The psychiatrist I was working with spent a long time talking to him and his family.  What we learned was that the man had experienced a terrible set of traumas when he was young and had used a lot of street drugs.  He was very reticent but eventually he talked about the toll that the pain he had experienced had taken and his guilt over what he had done to others.  For years he had been a patient of various psychiatrists who saw a painfully inarticulate, inwardly focused man who had gone spectacularly off the rails at eighteen and came to the conclusion that he was schizophrenic.  But with time it became clear that he was a confused, deeply hurt person (absolutely no intellectual handicap) with very little if any of the psychotic features that are integral to schizophrenia.  The voices that he had reported hearing telling him he was bad were much closer to the 'voice' I hear in my head telling me that I better get my work done than the voice a psychotic person hears which causes him or her to look for someone speaking.  He had never,  in the course of twenty plus years of psychiatric treatment, been given enough space to talk.  When we asked him why he was running around in traffic pulling on car doors, he said "I guess I wanted to get away." 

This is not just a story about misdiagnosis, "House goes to the psychiatric floor."  It is a story about using the tools of medicine to examine something adjacent to -- but not the same as -- medicine.  Not every affliction of the human heart calls for a cardiologist. 

The physician, who through his studies has learned so much that is hidden from the laity, can realize in his thought the causes and alterations of the brain disorders in patients suffering from apoplexy or dementia, a representation which must be right up to a certain point, for by it he is enabled to understand the nature of each symptom. But before the details of hysterical symptoms, all his knowledge, his anatomical-physiological and pathological education, desert him. He cannot understand hysteria. He is in the same position before it as the layman. And that is not agreeable to anyone who is in the habit of setting such a high valuation upon his knowledge. Hystericals, accordingly, tend to lose his sympathy; he considers them persons who overstep the laws of his science, as the orthodox regard heretics; he ascribes to them all possible evils, blames them for exaggeration and intentional deceit, “simulation,” and he punishes them by withdrawing his interest.
— Freud, five lectures on psychoanalysis

What do we see with our insight?

I work part-time in the psychiatric inpatient unit of a hospital.  I was talking with a patient there who was sad and frustrated because he really wanted to go home.  He couldn’t leave because of a court-order for hospitalization.  According to the people who brought him in, he had said things that sounded delusional but it was hard to understand what he meant because he speaks poor English and French and so do the people who brought him in.  Even with the help of a translator it was hard to understand what he had said and what he was thinking.  Was he expressing anger and frustration or was he expressing delusions, including some thoughts of self-harm?  “Why can’t I go.  I am okay.  You see I am okay.  I talk normally.  I’m not sick,” he said.  I said, “We see two kinds of people in psychiatry who say they are not sick.  There are people who aren’t sick and there are people who are sick but can’t understand it because of what the sickness does to them.”  I was trying to explain the concept of insight.

Insight has two distinct meanings in psychological parlance; one is understanding something through non-logical means, the “un-huh” experience.  The other meaning, which I will use here, is the ability to reflect on one’s own mental processes.  This second meaning of insight includes the ability to understand when one’s mind is acting in ways that don’t seem normal.  Many people who experience delusions or hallucinations, depression, anxiety or mania understand that those experiences are strange mental states.  But insight can be affected by mental illness.  I saw a patient who was able to have reasonable conversations shortly after coming into hospital for some pretty strange and dangerous behaviour both for herself and for others.  She seemed a little unusual, her speech was a little disjointed, a little pressured but she didn’t seem mentally ill until the psychiatrist who was interviewing her asked about delusions and hallucinations she had expressed.  The patient, who was quite smart, was absolutely convinced that these things were real; she talked about them in the same relatively reasonable way that she talked about conditions and the routine in the hospital.  After a few weeks in hospital and a lot of psychiatric medication, when I asked her about the thing she had been hearing and thinking, she said they were almost gone.  I assumed that she would see her previous psychotic symptoms as strange, perhaps embarrassing, perhaps frightening, maybe amusing, or as a piece of herself she had to contend with.  Instead she expressed no surprise that she had experienced these things, no recognition that they were odd and no sense that they were connected with her mental illness.  The voices had stopped.  They had been real,  a feature of her life.  It was as if the grocery store down the street had gone out of business.  It was there, then it was closed, neither its presence nor its absence was remarkable or connected with her mental state.  

I asked a psychiatrist who had seen her about this.  He said that years of untreated psychosis had “burned out” the patient’s capacity for insight.  There is a “kindling hypothesis” in psychiatric illness.  The idea of ‘kindling’ in psychiatry comes from the study of epilepsy and other seizure disorders where it is demonstrated that more frequent and intense seizures cause lower thresholds for future seizures.  Seizures cause a change that leaves an organism more prone to future seizures, seizures create the kindling for future seizures.  Some psychiatric research think that affective disorders such as bipolar disorder may have work in a similar way, early and intense manic episodes may create ‘kindling’ for future manias.  I couldn’t find any compelling evidence that this is the case in psychotic illnesses or a clear explanation of what the mechanism might be.  

It is clear that certain kinds of brain trauma can cause severely impaired insight.  Anosognosia is the phenomenon of not recognizing that one has an illness and is usually applied to someone has suffered a brain injury.  A patient may be paralyzed on one side of the body and find reasons not to perform a particular task that requires both hands.  The patient is not deceiving; the brain’s capacity to recognize impairment is, itself, impaired.  

In psychiatry, insight into one’s illness may be more complicated than in neurology.  Going back to the first patient, cultural and linguistic factors can make it very hard to assess.  It is also subject to a lot psychological ‘noise.’  When I talked with this patient it became clear he dreaded the idea that people would think he had a psychiatric illness.  There are good reasons why people - whatever the state of their mental health - don’t want to be seen as crazy by others.  And recognizing one’s own mental illness is a mixed bag.  Schizophrenic patients with better insight are more likely to take their medication regularly but are also more likely to be depressed .  Paradoxically, denying that one is mentally ill looks pretty friggin’ adaptive if your idea of mental illness is a life sentence of misery and social ostracization.   

For me lack of insight was always deeply, primitively, frightening.  First of all, it evokes a trap played by the powerful; say you are unwell to prove you are well.  At the same time what was always most frightening about mental illness to me was the primal terror of my own insight failing me, the extinction of something that is at the heart of my ‘self’.  

I talked to a former patient this week, who had expressed very strange ideas when she was in hospital and who had little idea at the time that these ideas were strange.  She is back in her apartment working hard to keep herself well.  She still has paranoid thoughts sometimes but she recognizes that they probably aren’t accurate reflections of reality.  She is able to challenge them.  She tries not to let them govern what she does. She doesn't find it all that upsetting that some portion of her mind is so cruel.  It made me feel happy to hear about her improved insight and I think it bodes well for her.  

I find that after working with mentally ill people I am less fearful of losing my own insight.  I suspect that like any other mental process, especially those connected with creating a sense of self, insight is nine-tenths smoke and mirrors, an illusion played by our brain on our mind.  Insight is a kind of delusion itself, the folly that we can know our own minds.