Diagnosis, Disease, Illness
Thank you for the opportunity to post on this site. It is one of my favorite locations on the web. This was prompted by my expression of vague discomfort when in your discussions of the new DSM, you wrote about Schizophrenia. In several posts (as old as rain… and Psychiatric Diseases… comment), references were made to "A list" conditions – always including Schizophrenia – that correspond more directly to biomedical conditions than the vast majority of diagnoses in the DSM. A number of years ago, if I had made a list like that, Schizophrenia would have been included. But when I do that thought experiment now, my list remains blank.
When I finished my training in psychiatry, it was clear to me that the concept of depression was amorphous. The kinds of people who would fall into the broad category of Major Depressive Disorder were so varied as to make the term almost meaningless. The various explanatory hypothesis for the causes of their troubles were equally broad, ranging from childhood trauma to unconscious conflicts to recent life stresses to abnormalities in their neurotransmitters. I found it confusing and frustrating. Although some of these explanations may be valid, I did not have an accurate way to apply a particular explanation or set of explanations to any given individual. In supervision and discussions with colleagues, everything was on the table; there seemed to be a problem with quality control.
At that time, I was not as confused when it came to the people I met who were experiencing problems that I label psychotic – hearing voices, having beliefs that did not appear to be true, having confused thoughts. The conditions – as manifested in different individuals – did not appear to be as varied. I was more comfortable with the categorizations of Schizophrenia and Bipolar Disorder. I was more comfortable using a disease model to understand their problems.
Over time, my thinking on this has changed. The easiest way to express this is that I am now as muddled in my thinking about the nature of psychosis as I am on just about everything else in psychiatry. After a career of spending my days talking to people who hear voices or have beliefs that no one else shares or have a confused or disorganized manner of communicating, I see more variation among them than similarity. People who "have schizophrenia" are asocial? Well how does that comport with the vast social network so many of the people I work with have? People diagnosed with Bipolar Disorder have episodes of illness interspersed with periods when they are symptom free? So how does that comport with the fact that so many of these people struggle to some extent in between their so-called episodes? I have been told many times by colleagues something along the lines of "Well I think he has Schizophrenia but he is so social." Or, with one of the worst phrases uttered in our field when a person with let’s say psychosis remains troubled in some way after taking our drugs, "I wonder if there is some Axis II going on here?"
But equally important is the observation that the line that I thought demarcated psychosis from other states of consciousness is at best a big blurry and indistinct smudge. This has been an area of curiosity and interest for me for many years. What is the line between religious belief and religious delusion? One person I know once said to me when I asked him about voices, "Well doc, I know you don’t believe this but I am not hearing voices anymore but God is still talking to me." What is the line between political delusion and fanaticism and passionate ideology? Another person I knew initially thought that the government was communicating with him through the airwaves and he was a covert operative paid monthly through what others thought were his Social Security checks. As he "got better", I found him one day reading a book about the JKF assassination. It was a book suggesting some conspiracy theory. Was he still ill? Is everyone who believes there was a second shooter in the JFK assassination ill? He showed me a picture of Howard Hunt taken in Dallas in 1963. Hunt was one of the guys who broke into the Watergate complex during the Nixon administration. I was obsessed with Watergate in 1973. Was I ill when I was so preoccupied with Nixon and Watergate? Was I ill when I was convinced that Nixon was involved even before there was full disclosure and then recovered when the tapes were revealed (apologies to those of you too young to remember this time)? Many of us look at the same political system and come away with deeply held but opposite formulations of the situation. Am I mad when I read the psychiatric literature and come up a different interpretation from many of my colleagues (I honestly do wonder, when I spend a quiet Saturday writing this, what keeps me so preoccupied while others can walk away and still feel good about their careers in psychiatry)? I do not ignore or dismiss that some ideas are more profoundly disturbing for the individual and those around him than others. My only point is that I no longer see a line that clearly demarcates sanity from madness.
I used to think I could tell the difference between the voices experienced by someone labeled with schizophrenia and the voices of someone who is experiencing a dissociative episode. The former, I thought, would be related to some distinct – probably fixed -altered brain state. The latter due to a more transient and reactive state. The former would best be treated with drugs, the latter with psychotherapy. I even wrote a paper (Dissociation and Psychotic Symptoms) about this many years ago. Although I still suspect that there are a variety of different kinds of conditions or states which might result in a person hallucinating, I no longer feel confident in being able to make that distinction. I am also not sure they are entirely distinct. Maybe they are overlapping. Remember, I admitted to being muddled on this.
I am not someone who finds it useful to make a distinction between the mind and the brain. In my view, we are talking about the same thing but at different levels of abstraction. What we think, feel, hear, and see is all processed through the brain. Some of this is easier to parse out. In my college neurobiology class, I learned from the Nobel Prize winning scientist, David Hubel how the brain "sees" moving objects. We saw neurons "react" to the alterations in light. Of course that is a long way from understanding why we think a particular painting is beautiful but it is a start. Even before I moved to Vermont, I knew of one of our most famous citizens, Phineas Gage, whose personality changed after a tamping iron was lodged in his brain’s frontal lobe. This was an early confirmation that things as complex as social comportment and motivation were related to brain function.
I also understand that in all of medicine, the concepts of illness and disease are increasingly amorphous. We tend to think about the clearly defined entities – a strep infection that clears with a 10 day course of penicillin and forget the many shades of grey. Many of us harbor pathogens that do not make us sick. There is an increasing focus on the biodome – the many bacteria that live on and within our body. Most of them not only do not make us ill but may promote our health. Even cancer is defined more on a gradient that in a categorical way. There are many lesions in the body that are not clearly cancerous but are also not clearly normal. The notion that there is a clear line between health and illness in this realm is fuzzy – we all have cells that have a malignant potential but our body polices and eradicates them most of the time. Yet, to tell someone who is dying of cancer that she does not have an illness or that the condition that is killing her is a construct begs absurdity.
Does this inform us about how we think about psychosis? Does the problem just lie in a popularly held but antiquated notion of what an illness is? Is it possible that a complex array of events – genetic vulnerability, nutritional deficiencies, life stress – can culminate in one person experiencing some passing phase of mild altered thinking that will resolve with sleep and support from friends while in another person lead to a sustained state that holds on for months if not years? Is a state induced by heavy drug use similar to or different from a state that appears to be induced by intense abuse? Do we really need to understand the workings of the brain to help a person who suffers in this way? Does our message – this is a disease – relieve guilt and shame or exacerbate it? Is it helpful to have psychiatrists, are we doctors of the brain or of the mind, do we just confound and confuse?
Although I end up with more questions than answers, there are people who have helped me gain some clarity. One of them is the British psychiatrist, Joanna Moncrieff. In her books, "The Myth of the Chemical Cure" and "The Bitterest Pills" she makes the distinction between a drug centered and a disease centered approach to thinking about psychoactive drugs [see her here]. She has written about this on MIA and there was also a critique of her recent book. The disease centered approach is predicated on the notion that a) we have identified the specific disease or pathophysiology that underlies a particular symptom or syndrome and b) the drug targets that particular abnormality. The drug centered approach takes into account that a drug has psychoactive effects. Some of those effects may be useful for some people but, if so, it is not because it is correcting a specific underlying problem. An important advantage of the drug centered approach is that it is more intellectually honest since we have yet to define any particular diseases or brain abnormalities associated with the various mental states that we label as disorders. It can also help to protect us from minimizing the problems these drugs cause. In the disease centered modeled, these problems are considered side effects that need to be tolerated in order the treat the disease. In the drug centered model, we are more likely to consider all of the effects of a drug and then determine with our patient whether these effects yield more benefit than harm. The disease centered model has resulted in our forming premature conclusions that we understand these altered states and it has contributed to some of us of being more sanguine about forced treatment because it allows us to think that rather than just tranquilizing people to contain problematic behavior, we are treating a disease.
Another blogger whose work I admire is Nev Jones who writes at her site Phenomenology of Madness. Nev and her colleague, Layasha Ostrow started LERN. Nev writes about her own and her family experiences with – to use her term – madness. One of her more poignant posts is ain’t no way to deny it, if it’s in your soul. She is so articulate and careful with her language (among other things, she is philosophically trained) that I hesitate to say more and risk misrepresenting her. She is an activist and a scholar and I find her courageous in her willingness and ability to articulate difficult and sometimes unpopular positions. But if I were to encapsulate the one point Nev has so clearly articulated for me, it is the concept of heterogeneity. Any attempt to label just stomps upon the rather vast conditions or states or experiences – words just plain fail me here – that I observe almost every day.
A friend who has been a helpful editor has commented that I sometimes end rather abruptly. I fear I have done it again. As I said, I am pretty muddled. But this is already long so I hope anyone who has made it this far is not too disappointed.
One person’s reality is another’s political agenda. What should be disturbing amongst us colleagues is this generic use of “schizophrenia” simply because someone is psychotic. And it is being done by us, psychiatrists!
It comes down to what is healthy and functional, in my opinion. If someone chooses to believe and embrace a position or attitude that does not impair one’s ability, but is not very sensible or credible to others, well, is there a right or wrong? But, it is when the person with the questionable belief denies or diminishes the impact these others have on the believer’s function, or conversely the believer on the others’ functions, then we seem to be getting into difficulty.
Forget psychosis, what is Obsessional & Compulsive as a Disorder? How often does the person with these rigid and inflexible patterns of framing and coping deny the conflicts the functions create in the home, the job, the community? Again, it is dysfunction and impairment that has to be defined and reflected back to the individual.
We are not an island in this sea of humanity. We are treating individuals, and need to remember that every time the next one enters the office.
Otherwise, is every presentation of chest pain an evolving MI? That is the analogy to me! Oh, and living in this country of late, who isn’t at risk to become psychotic? God knows one has to wonder with much of the alleged leadership in DC of late!!!
But, I digress…
Thanks to Dr. Steingard for a thoughtful post. The way I look at things, there is little reason to doubt the reality of classical, prototype, major psychiatric disorders. These are what I have called the A-list – psychosis, mania, melancholia, delirium, dementia, obsessive-compulsive disorder, panic disorder, crippling anxiety, autism, Tourette’s disease, and more. The muddle Dr. Steingard mentions comes about because of two factors. First is the variability among patients, and second is the fuzziness of the boundary between normal and pathological. A related issue that contributes to the muddle is the disconnect between diagnosis and treatment. By that I mean not all cases with a given diagnosis require the same standard treatment.
Conditions in the A-list above are all presumptive candidates for underlying brain malfunction. That formulation does not in any way exclude social and behavioral contributions to the development of the condition – a good parallel from medicine is hypertension. Lifestyle and social stresses have a role there, too.
Regarding variability among patients, we see that everywhere in medicine – from multiple sclerosis to Parkinson’s disease to rheumatoid disorders, and on and on. Sometimes this variability is a matter of temporal staging and sometimes it reflects a real dimension of variable severity. This variability is what produces the disconnect between diagnosis and standardized treatments. Not every patient with rheumatoid arthritis needs the new heavy duty biotech treatments; not every patient with Parkinson disease needs to go onto l-DOPA treatment right away. I agree with Dr. Steingard that we are just now rediscovering this principle in psychopharmacology. The time for automatic, unquestioning, paternalistic prescription of lifelong medications has passed. There is a place for collaborative decision making about drug maintenance – but only so long as any discontinuation occurs within a solid therapeutic relationship.
As for the boundary between disorder and normal extremes, my criterion in the case of psychosis is insight. When a psychotic patient commandeers an airliner, prevents the scheduled passengers from boarding it, declares he is the new owner of the airline, announces that he intends to fly his entire extended family to London to meet with Margaret Thatcher, and fights with airport security when they try to redirect him, then he has a classic case of mania, and his complaining to the magistrate at the commitment hearing that the psychiatrist making the diagnosis did not produce a confirming laboratory test will carry no weight. For other conditions like autism or anxiety disorders, we just have to accept that the line is fuzzy, but it is still a line and most of the time it is pretty clear where the patient lies in relation to the boundary.
It’s a mistake to think ideologically to the degree that you cannot recognize florid psychosis. It can be a fine line. What do you do to help a person who is convinced that the President is from Kenya, not a citizen, and is plotting to install communism and sharia law to destroy democracy? How can you see the line between that person talking crazy talk all day, and that person arming themselves to kill a police officer, fireman, or TSA agent?
There is florid psychosis. I’ve been there and had to laugh when my friend apologized for calling 9-1-1. I told him that that was precisely what he should have done (and he apologized for everything which is a bad habit). I was barking mad and too far gone to be trusted. What caused that is arguable, but the need to restrain me and put me into a safe place was not.
I was only in that state for a couple of hours. The thought of someone living that paranoia 24/7 like Nev’s mother is grueling. Whether or not she can get appropriate treatment is surely an issue, but the need to intervene is straightforward. She was starving herself, and was incapable of forming any kind of trusting bond. The alienation and loneliness itself was a threat to her well-being.
As for the person who believes that the President is a Manchurian candidate here to destroy Democracy, it’s difficult to tell where the effects of lying and destructive media ends and madness begins. I think that if psychiatry ever breaks significantly from the biological disease model, that it should recognize paranoia and fraudulent views of reality induced by con men on the radio and television. I do believe that there is a madness that is— in the brain/computer analogy— a toxic program that leads to a functional madness.
These are good points, Wiley.
The term of art for the beliefs of those who are convinced the President is a Manchurian candidate here to destroy Democracy is overvalued idea. And yes, it is a fine line between that and a delusion, so there will always be a zone of uncertainty. Here is a recent look at the qualities of the two.
A comparison of delusions and overvalued ideas.
Mullen R, Linscott RJ.
Abstract
The relationship between delusions and overvalued ideas is uncertain, and has clinical as well as conceptual implications. This study aims to compare delusions and overvalued ideas on several characteristics that might further describe and distinguish them. A total of 24 individuals with delusions and 27 with overvalued ideas were recruited from a psychiatric service and assessed using a semistructured interview. Deluded individuals were less likely to identify what might modify their belief, less preoccupied, and less concerned about others’ reactions than those with overvalued ideas. Delusions were less plausible and their onset less likely to appear reasonable. Delusions were more likely to have abrupt onset and overvalued ideas a gradual onset. Conviction and insight were similar in the 2 groups. Belief conviction and insight may be an inadequate basis for separating delusions from overvalued ideas. Abrupt onset, implausible content, and relative indifference to the opinions of others may be better distinguishing features.
PubMed ID 20061867
Journal of Nervous and Mental Disease 2010; 198: 35-38
Interesting, Bernard. Thank you.
Dr. Carroll,
1BOM, had invited this post in order to foster a conversation. In that spirit, I have a response to your comments.
What prompted this post was my reaction to the notion that there are certain conditions that are more clearly linked to “biomedical” conditions than others. If I understand you correctly, you are, with psychosis, drawing the line at insight. Insight is important for many reasons. However, insight is not a fixed quality as Wiley points out. I mentioned the man who divides his voices into two categories – one related to mental illness and one related to religious experience. I once knew a woman who happily came to the clinic to get an injection of fluphenazine. She had a good relationship with us and would have told you she was diagnosed with Schizophrenia. On one occasion, she complained about men waking her up at night. They were talking outside her window and threatening to hurt her. When I gently inquired as to whether this might be a hallucination, she was infuriated and did not talk to me for two months. I have known people who are paranoid with a fixed conviction at one point in time but at another point can reflect on the fact that perhaps their thinking was a bit distorted and exaggerated. So using insight as a “marker” in an etiologic way, i.e., signifying an underlying biomedical process, just does not fit with my observations over the years.
I hope I don’t make anyone upset posting this here, but i think it’s relevant. Sorry if i do.
There was a study done in 1981, it was titled “Unrecognized physical illness prompting psychiatric admission: a prospective study.” This study was later replicated (but in a smaller group of patients) with very similar results.
The study screened patients for known physical illness in a research setting who had just been freshly admitted to a state psychiatric institution. The authors were checking to see how many, if any, patients were admitted having had physical illness misdiagnosed as psychiatric illness.
“They found an unusually high incidence of medical illness: 46% of these patients had an unrecognized medical illness that either caused or exacerbated their psychiatric illness, 80% had physical illnesses requiring treatment, and 4% had precancerous conditions or illnesses.”
The study is here:
http://www.ncbi.nlm.nih.gov/pubmed/7235058
The replication is here:
http://www.ncbi.nlm.nih.gov/pubmed/7416911
There don’t really seem to be any replications in recent times that did a full battery of tests on every patient rather then a preliminary screening (which misses a lot). This is intensely worrying.
—
When a profession treats exclusively symptoms of the unknown, it can not afford to label those patient’s symptoms as their own conditions, e.g. Schizophrenia/Schizo-affective Disorder.
That doesn’t mean people aren’t sick, or that it’s not sometimes extremely difficult to tell if, or when, they recover from unknown illness, but it’s really tragic that a ‘Drug Centered vs Disease Centered approach’ needs be argued at all.
There are no diseases in the unknown, there’s just the unknown until it’s known, and clearly symptoms are random and do not reflect any specific cause (the replication study goes into detail what was found).
I am worried that a drug centered approach either can’t be realistically adopted or won’t ever work until the DSM is thrown out. The NIMH is certainly threatening to make things much worse as well, giving neurological ambiguity to existing DSM disorders like ADHD.
Well, thinking out loud now, I wouldn’t say I draw the line at insight, but I do give it a lot of weight in an assessment. A long time ago I learned from writings of British psychiatrists in the 1920s that no one sign is a touchstone for diagnosis or prognosis or response to treatment. Same thing for emerging biomarkers. That’s the thing about clinical work – one has to live with uncertainty while being practical about helping patients. As a matter of fact, reading those early British folks like Edward Mapother, T.A. Ross, and J.D. Gillespie makes one realize how little clinical progress we have made in understanding mood disorders, especially from the patient’s perspective, save for the serendipitous discovery of lithium and antidepressant drugs, and not forgetting ECT. Along the way there were several colossal missteps. One was the insistence of the influential Aubrey Lewis at the Maudsley Hospital in London that depression was a unitary disorder with only distinctions of severity. A second was the re-adoption of that view by DSM-III. That is why Dr. Steingard can call the concept of depression amorphous – and we have only ourselves to blame for that.
Oops, sorry that’s not the replication but the same study linked twice, I seem to have gotten my references scrambled. Here were two more recent study’s for correction~
Unrecognized medical disorders in older psychiatric inpatients in a senior behavioral health unit in a university hospital. (2003)
http://www.ncbi.nlm.nih.gov/pubmed/12461226
“At admission, 27 of 79 cases (34%) had unrecognized medical disorders. Comparison of these cases with the cases that did not have unrecognized medical disorders found no differences in age, education, gender, or cognitive abilities.”
Previously unrecognized physical illnesses in psychiatric patients (1991)
http://www.ncbi.nlm.nih.gov/pubmed/1997369
“The authors describe a study in California in which 78 inpatients received an augmented evaluation one to two weeks after their admission evaluation. The retest evaluation detected previously unrecognized physical conditions that were judged to be causal among patients and physical conditions that were judged to exacerbate the psychiatric condition among 56 patients. “