Friday, 9 December 2016

Illness, Authority, and the Burden of Proof

Psychiatry is beset by a chronic controversy around the world “illness”. Critics and opponents of the specialty have long been engaged in what the philosopher Ian Hacking called an “unveiling” project, questioning the authority of psychiatrists to label people as ill. This has generally worked by highlighting the lack of an unambiguous marker or validator to confirm the presence of illness. Arch critic Thomas Szasz noted the lack of a physical lesion to prove the existence of pathology, and declared mental illness a “myth”. In a famous early 1970s experiment, Rosenhan and colleagues demonstrated that a single malingered psychiatric symptom could, without confirmatory tests, lead to hospitalization.

Herein lay the unveiling Hacking describes; revealing that something supposedly real was in fact constructed. The broad narrative of these critics was that “psychiatric illness” was a term applied to behaviours and experiences that were not pathological. Unlike other medical specialists, who are experts in demonstrably physical disease process, psychiatrists lack an externally validating terrain. They thus lack the authority to say of their patients “this person is ill”.

Notice the form of the argument; without validating evidence that a physically demonstrable disease process is present, we ought not to use the word “illness”. Thus, in psychiatry, we seem to treat illness as being similar to criminal guilt. A person is healthy until proven otherwise; sane until proven insane. Maybe this is the right way for psychiatry to be organized. We all naturally seek to be recognized as autonomous, reasonable individuals, capable of deciding for ourselves. We recoil from the possibility that our vision of reality may be compromised. Putting the burden of proof on the psychiatrist protects us pre-emptively from the possibility our autonomy is compromised and our slant on the world is “off.”

But it is worth contrasting this state of affairs with other forms of medical complaint. In a recent book about psychosomatic illness, neurologist Suzanne O Sullivan reports on a series of patients with serious physical symptoms. In each case, she concludes the most important causal factor lies in emotional conflict or disavowed stress. Although she does not deny these patients are ill, she does deny that the illness is straightforwardly physical in the way they believe. It is interesting to observe that, contrary to the situation faced by many psychiatrists, Sullivan has to work hard to persuade her patients that they don't have a disease.

Here the burden of proof is somehow reversed. The patients approach the doctor claiming to have a physical disease. Only a complex diagnostic process is able to rule out its presence and allow the symptoms to be accounted for as “psychosomatic”. Even then, there is no disease, but the patient is still ill. How can this be? Doesn’t Sullivan lack the same medical authority as psychiatrists in these instances? Isn’t she, like them, forced to conclude that absence of a disease process entails absence of an illness?

Apparently Sullivan cannot observe her patients’ situations and fail to conclude that they are ill. This seems partly to be sympathetic, and partly intuitive. Sympathetic because Sullivan is clearly at pains to communicate to her patients that she takes their experiences seriously. They feel themselves to be ill. Intuitive because and to all intents and purposes, these patients simply seem to be ill. When an individual is unable to walk, or is subject to persistent and debilitating seizures, we readily concur that we are in the terrain of medicine. We havestrong intuitions about where illness is and where it is not present. How otherwise how could the arguments about disorders like ME/CFS could, get so heated and confused?

Somehow our intuitions about physical and psychiatric debilitation are different. We question psychiatrists’ authority to label their patients “ill” in way we don’t bother to with for other specialties. This is not just a question of objective markers, it is written into how we interpret different experiences. This may amount to a systematic bias against seeing illness in the psychiatric realm. Insofar as psychiatry can suffer from “mission creep” (into the medical-labelling of political dissenters for example) this bias may have its uses. However, despite a relatively vocal movement for the demedicalisation of mental health services, there is reason to suppose that a complete movement away from an “illness model” will not serve everyone.

“Illness” is not only a word imposed top down on people’s subjectivity by patrician doctors, it is also a way of giving form to experiences that are painful, disorienting, dangerous or overwhelming. The idea of experience as illness can make sense of it no less than a narrative about its social, traumatic or affective origins, and is in any case not necessarily in conflict with such a narrative.

It is worth wondering then, why we light so easily on the idea of illness in the case of some forms of overwhelm, and so reluctantly in the case of others. In either direction we run the risk of going wrong. We might reasonably ask who has the authority to say that someone else is ill, but we might also wonder who has the authority to decide who is not.


  1. Thanks Huw, thoughtful as ever. But to me this misses the point, namely that given the current state of knowledge that you describe, the contested nature of ‘mental health’ and the inherent complexity and individuality of human distress, in this context none of us have the authority either to tell someone they are ill OR that they are not. The pros and cons of using an illness label will be different for each person (see my piece on this so we need to respect individual choice here. I’d argue that as professionals our job is to help people access the information and support they need to come to an understanding of, and name for, their problems make that makes most sense and is most helpful for them. It is NOT to impose ours. This was the approach we adopted in

    1. Indeed, Tom Szasz actually believed that if psychiatry were to lose both the two powers that are unique to the specialty (legal authority to forcibly "hospitalize" and "treat" people under the guise of help; and legal authority to absolve criminal culpability with the insanity defense), it would actually wither away.

      I would advocate strongly for such a test. "Help" is something that people must be free to refuse, else it is something else.

    2. Hi Anne, thanks for commenting. You see more space than I can between your view and what I am saying here. You are laudably cautious about imposing a worldview on someone and their experiences. So I am I. Here I suggest that tension works in both directions. It is a concern wherever we insist that experience [x] is illness, and it is a concern wherever we insist that experience [x] is not an illness. The Understanding Psychosis report promoted a form of pluralism-but that is not the predominant approach to this question. Frequently we see an explicit and forceful argument against illness understandings, which is what led me to my closing question here. I am not particularly exercised about having the right to tell people they are ill, but I find it uncomfortable when my colleagues insist on telling people emphatically that they are not.

    3. But when you say that we must respect the individual's choice, isn't the choice largely guided by 'the professional'?

      My experience is zero in contrast with yours, Anne, but I actually met too many individuals for whom 'illness' was a relief. It offered a way out of their guilt.

      As a linguist, I think the discussion whether it's 'ditress' or 'illness' or something else is some extent at least beside the point. This is because we do not change the entire 'way of speaking' both within professional, as well as 'private' and pubic contexts.

  2. It is interesting, Huw, but I think patients with ME (and I am one) would take issue with the way ME has been, in our eyes, dragged into this debate. We would reject the premise that an illness recognized as neurological by the WHO and which causes measurable neurological, endocrinological and immunological changes in patients should be considered anything other than a straightforward virus-caused, neuro-immune illness. We view the 'controversy' over ME to be entirely one-sided and increasingly unorthodox, given the stated position of the US NIH and IOM and the involvement of top scientists in the USA in the search for the biological mechanism. The attempts to claim ME as psychosomatic is no different, to us, from suggesting that epilepsy is psychosomatic because a small number of patients have psychosomatic fits. To include ME in such a discussion, we would say, makes no more sense than including encephalitis, hepatitis or HIV/AIDS.

  3. Hi John, thanks for commenting. I am too ignorant of M.E. to have a well developed view on its status, so in writing this post I don't take one. What I did seek to do is draw attention to a plain fact about the sociology of medicine. Namely, that there exist some people (and O'Sullivan was my go-to example) who maintain skepticism about an underlying disease process in M.E., even while many others (you being an example) claim that one exists. Perhaps the skeptics about M.E. are wrong, and perhaps they should have shut up long ago. However, as O'Sullivan shows us, they haven't. What I am saying in my post is that this fact about the medical sociology of M.E. is analogous to the situation in much of psychiatry, where some people presuppose a disease process, and many others maintain skepticism. Now weirdly, even skeptics about M.E.-as-disease (and again, O'Sullivan is a case in point) admit that patients can be ill, whereas in psychiatry, disease-skepticism tends to go along with illness skepticism. Why? If I can get the reader to find this situation puzzling, I will have said all that I wanted to say. Sorry that M.E. gets dragged in, but it's the M.E. skeptics here that are doing the dragging.

  4. I find it puzzling that you find it puzzling. No-one denies that people are often in great distress and great need. What some take issue with is the characterisation of their distress as illness by powerful *others*, who on the basis of that interpretation have the power to do things to them that in other circumstances would be considered assault.

    1. Yes I agree and cannot emphasise enough, no-one here is arguing for the characterisation of peoples' experiences by *others*. I am interested that our intuitions appear to bottom out in different ways. Here is the basic question that highlights what I am finding puzzling: What is it about physical manifestations of distress (in the form of psychosomatic symptoms) that makes them more "illnessy" than mental manifestations of (theoretically) the same distress? Why do we more readily accede to illness self ascriptions in the former case relative to the latter?

  5. Thanks, Huw. Yes, I understand you're not the one who is doing the dragging. It is an interesting point about the disease-scepticism, one which perhaps is explained by the history of ME.
    O'Sullivan's description of ME as psychosomatic, as generally understood, is false. If the symptoms of an ME patient can be explained in terms of an underlying psychological problem (which I think is how most people understand psychosomatic) then they do not and cannot have ME. They have the psychological problem. Such a problem precludes an ME diagnosis.
    The leap which was made in the 80s was to claim that ME is an illness of false belief: a patient after an infection continues to feel symptoms which no longer can be attributed to an ongoing, underlying biological cause. It is in a sense a form of psychosis (my words): we are hearing voices from our body when it's not making any noise.
    Their view was that since we experience these symptoms, even if there is no underlying cause, then these symptoms are real and that we do therefore have a real illness.
    It is a clever solution, even if entirely wrong. It also removed a few problems for them.
    First, they are obliged to recognize ME as an illness, because it is listed as such by the WHO. It is government and NHS policy to recognize the WHO listing.
    Second, it has given them a defence against any criticism by ME patients. For years, their first statement has always been they see ME as 'real'.
    Third, their model when treating patients is not to challenge the false beliefs. Their view is that to do so is only to encourage the patient in those beliefs. It is why they have stated that receiving benefits can be a bad thing for ME patients, as doing so enforces the false belief.
    To ME patients, this is all casuistry.
    Where this relates to your blog is that they have in fact turned the burden of proof on to patients: show that your illness has a biomarker or it is simply a false belief. Even when measurable changes are found in ME patients, these are explained as products of the aberrant thoughts.
    ME patients though think the burden of proof should lie with them:
    While accepting that the patient's beliefs are real and the experience of illness genuine, they are saying that this belief in itself is an illness. They are implicitly stating that one element of this belief is false. A true belief that one is ill cannot in itself constitute an illness. An experience of symptoms is not in itself an illness unless some part of that experience is false.
    And since they are making such an assertion then the burden of proof is on them to provide evidence to support it. They have never provided such evidence.
    It is why PACE is so totemic. While on one level everyone is debating whether interventions amount to treatment, on another level, it is a dispute over false beliefs. If CBT can be shown to work, then it can be used as evidence for false beliefs. Since there is no evidence for every other theory behind the model (ME is not depression; patients do not respond more to placebo; belief the illness started with a virus makes no difference; patients do not fear exercise; ME is not caused by physiological deconditioning), the claimed effectiveness for CBT is all they have left.
    Except, of course, PACE found no evidence for the effectiveness of CBT.