From Unum's 2007 CMO report
It seems that this is now off-line, ungoogleable (?) and only availably on a web archive, so I thought I'd post it here. It's best understood within the context of the medical insurance industry and it's approach to CFS, and the other sections of the report (available at link below) are of some interest too, but it's not something I'd encourage everyone to read.
http://web.archive.org/web/20081030...ome/AccessiblePDF/CMOReport2007.htm?UPCC=True
Why and When do Doctors Collude with Patients? - Professor Simon Wessely - Director King's Centre for Military Health Research.
Collusion it must be a bad thing, mustn't it? Just recently, Conrad Black was found guilty of colluding with some fellow directors to defraud his shareholders, some airlines were accused of colluding in price fixing, as was the USA of colluding with China to bypass global warming targets. But doctors, as members of a highly prestigious helping' profession, couldn't possibly do such a thing.
But we do, and we do so every day. Sometimes we do so out of self-interest. But more often than not it is done from a genuine belief that it is in the interests of the patient. And sometimes it is even true.
What The Patient Doesn't Know Won't Hurt.
All medical students nowadays have drummed into them the concepts of autonomy and shared decision making. Paternalism is as outdated as using a stethoscope to take a blood pressure or an oral thermometer to take a temperature. I sometimes tell our students that I am paternalistic towards my children, which doesn't mean that I don't love them, but it falls on deaf ears. So now if you are sick and faced with some tricky choices, there's no point in asking your young doctor what you should do - the response will be "what do you think?" The temptation to respond with "you're the one who went to medical school, not me" cuts no ice anymore. Our modern doctor will give the options, and then ask the patient to decide.
OK, so even an old cynic like me has to admit that this is progress. Most patients, most of the time, want to know the unvarnished truth. Thankfully the days when we withheld the diagnosis of cancer because we felt people couldn't cope have gone. And if it is bad news, so be it. A recent study showed that 87%of parents whose children had life threatening illness, namely cancer, desired as much information about the prognosis as possible. But the 13% who didn'twant to know were not even spared distress there was no association between distress and not wanting to know everything. So whatever else colluding withthe parents was doing, it wasn't sparing their distress (Mack et al 2006).
But there remains a small minority of patients who genuinely do not want to know the bad news, at least not all of it and not right now. Faith, hope and charity all play a part (Leydon et al, 2000). Sometimes it is because the patient really does trust the expert, and doesn't want to know any more. Sometimes the patient wants to maintain hope, and avoiding distressing information can enable them to carry on with their lives for a while longer. And sometimes it is charity thinking that there really isn't enough time for the doctor to tell them everything, and to do so will only make things harder for the rest of the patients in the queue (Leydon et al, 2000). And it is nothing to do with intelligence, background or training. A former editor of the New England Journal of Medicine, himself an oncologist, admitted that when he was diagnosed with cancer he did not want to know everything, nor to take all the decisions himself.
So gradually our ethically pure new doctors will learn just how in real life things are not neat and simple, but grey and ambiguous. As another study of cancer doctors and their patients showed - "The doctor did and did not want to pronounce a death sentence' and the patient did and did not want tohear it" (The et al 2000). Sometimes a little collusion can go a long way.
Collusion and the Number Needed to Offend.
So we collude out of a paternalistic belief that the patient's interests are not best served by sharing everything that we know. And sometimes we collude because we feel that any other course of action will lead to confrontation, and adversely affect not just our relationship with the patient, but the illness itself.
Take the example of hysteria. Despite being so often described as on the decline it is instead - as the authors of one study put it with tongue, oneassumes, firmly in cheek -"alive and kicking". Slater's view that a diagnosis of hysteria merely reflected ignorance, and that most cases would turn out to have diagnosable disease if they were properly investigated or followed up for long enough, has been repeatedly disproved. Go to a neurology clinic and there will be a few patients unable to walk, or unable to see, and yet who quite clearly do not have any organic disease to account for this. Likewise, there existthose who have all the features of epilepsy but a normal Electro-encephalograph (EEG) even in the middle of what looks like a grand mal convulsion.
So when the scans, EEGs and nerve conduction tests are back, and the diagnosis clear, what happens next? Does our ethically trained doctor, embracing autonomy and avoiding paternalism, share this information with the patient? "Sir/Madam there is no neurological reason why you cannot walk. You have what psychiatrists call conversion disorder, but everyone else calls hysteria". You can bet your bottom dollar that they do not. In another study nearly every UK neurologist admitted seeing patients for whom the diagnosis of hysteria and/or conversion disorder was appropriate, but hardly any used that label in front of the patient. Instead most took refuge in a variety of euphemisms.
And who can blame them? In one of those papers that one wishes one had written oneself, Stone et al showed the importance of labels, and the hierarchyof euphemisms, devising a new metric - the Number Needed to Offend' (Table 1). You have to tell 43 patients who cannot walk that they have multiple sclerosis before one becomes offended, a mere 9 if you say it is "functional", but two is sufficient if you call it hysteria. Source: British MedicalJournal, Dec 21, 2002 What should we say to patients with symptoms unexplained by disease? The "number needed to offend".
Or take the word psychosomatic'. Implying that there is a link between mind and body has a distinguished history, and is part of popular culture. Indeed, some lay models of illness are too psychosomatic depression does not cause cancer, people do not die of broken hearts, nor do parental over-expectations cause autism. But on the other hand psychosomatic also scores highly on the Number Needed to Offend scale not surprising, since when used in the media it usually means "imaginary" or "made up" (Stone et al, 2004).
So using labels, even if hallowed in textbooks and reference manuals, can threaten not just any chance of a therapeutic relationship, but can trigger a battle of diagnosis, from which the patient themselves is the loser, determined to prove the doctor wrong in the only way possible by staying ill. As rheumatologist Nortin Hadler put it "if you have to prove you are ill, you can't get better".
So no wonder the doctor and patient both collude. Euphemisms can be important, if they allow the patient to address tangible clinical issues or engage in appropriate treatment and rehabilitation, but without endangering their self esteem. Let's hear it for collusion.
The Number Needed to Offend - Table 1.
A doctor would be suggesting I was Putting it on', Mad' or Imagining symptoms' if I had a weak leg and they gave me this diagnosis (%)
Number Needed to Offend: Issue Percentage % Number Needed to Offend (95% CI)
Symtoms all in the mind 93% 2(2-2)
Hysterical weakness 52% 2(2-3)
Psychosomatic weakness 42% 3(2-4)
Medically Unexplained weakness 35% 3(3-4)
Depression associated weakness 33% 4(3-5)
Stress related weakness 20% 6(4-9)
Chronic Fatigue 15% 8(5-13)
Functional Weakness 13% 9(5-16)
Stroke 13% 9(5-16)
Multiple Sclerosis 5% 43(13-Infinity)
Source: British Medical Journal, Dec 21, 2002 What should we say to patients with symptoms unexplained by disease? The "number needed to offend".
Collusion and Self-Interest.
Finding a label that will not offend the patient whilst enabling them to engage in sensible treatment can be a good strategy. I know a number of neurologists who manage patients whom others might call depressed, anxious or somatising under a variety of labels such as neuralgia, chronic migraine, cervical arthralgia, or fibromyalgia. And they don't do too badly. Support is given. Antidepressants are prescribed, although rarelyfor depression', but for analgesia or sleep disturbance. Rest, but in moderation, is encouraged, and linked to some form of regular activity. "Collusion" some might and do say, but it can promote rehabilitative or psychological treatments which if taken head on, would only have led to offence.
And it's nothing new. When historian Edward Shorter reviewed the records of one Edwardian neurologist, Parkes Weber, with an extensive Harley Street practice, what was striking was just how little has changed. The newly affluent middle classes, more often than not women, flocked to his consulting room to be told that they were suffering from nervous exhaustion, that they lacked vital force, and that their nerves really were weak in short they had what was at the time the perfectly respectable label of neurasthenia.
But there was also a dark side, evident in some of the writings of those on the other side of the couch. People such as Virgina Woolf or Charlotte Perkins Gilman, struggling to escape stifling marriages or the constraints of a society that refused to accept women as anything other than second class citizens. Women seeking to escape the confines of what the Germans would call "cake, church and kitchen" were instead given tonics and rest cures when what they wantedwas recognition and independence.
And it got worse. At the same time as Parkes Weber practised north of the river, south of the river at the newly opened King's College Hospital surgeon Willie Lane plied his trade. He too was interested in the problems of women with unexplained symptoms, most of which we would now ascribe to depression,anxiety or somatisation. But the life of the mind was not for Willie he believed that the problems all came from the colon. To be precise, that all this "toxic" somatic symptoms were the result of the products of digestion leaking out of the colon and causing ill health. It was called "auto intoxication". It was nonsense, and it was dangerous nonsense. Willie was a surgeon, and surgeons are brought onto God's good earth with the desire to operate. And so Willieused to remove the colons of these unhappy young women. 10% of them died. In fact that was quite a good figure, lower than the standard mortality forabdominal surgery at the time, since Willie was a good surgeon. And amazingly, many of those who survived got better, and used to write to Willie in appreciation. And so Willie ended his career in glory, as Sir Arbuthnot Lane, surgeon to the King, and still the only person with wards named afterhim in two separate London teaching hospitals. Colluding had done him no harm at all. However, it is unlikely that he performed this surgery to cynically exploit his patients and more probable that he firmly believed that he was acting in his patients' best interests.
And whilst many modern Parkes Webers live on, there are also still many Willie Lanes as well. It is still possible to get one's autointoxicated' coloncleaned on a regular basis at several establishments near the modern Harley St and celebrities and minor royals have endorsed the treatment.
Whatever your problem, they have the solution. Every test they do is always positive for some mysterious reason the labs they use always find deficiencies in one trace element or another. They diagnose allergies using tests that NHS allergists and immunologists regard as at best flawed, and at worst, such as Vega testing, utterly nonsensical. They spout the language of science, but it is a parody language, mixing cod' immunology with pseudo radiation science interspersed with New Age homilies (see
www.badscience.com). They portray themselves as brave pioneers, unable to practice within the dull, evidence based confines of the NHS, and only when freed from the shackles of NICE and prescribing committees who are only able to give their patients the kind of treatments they really need - at a cost of course. They replace hormones that don't need replacing giving thyroxine to people with normal thyroid function is currently popular; and like Willie they remove things that don't need removing, dental amalgam from one's teeth being another current fashion. These medical entrepreneurs have a talent for converting the latest scares into opportunities. No sooner did Panorama identify Wi-Fi as one more cause of fatigue and malaise, a raft of Wi-Fi protection devices' sprang into being.
As soon as one diagnostic fad disappears, it is replaced by another. The word autointoxication has largely vanished, but colonic lavage and detoxificationis a mainstay. We don't see much spontaneous hypoglycaemia these days, and chronic brucellosis has gone the way of all flesh, but candida, dental amalgam, food allergy and multiple chemical sensitivity continue to flourish, and the new electrical hypersensitivities are starting to make themselves felt.
To be honest, the exact label is not the issue, and many are interchangeable what is important is that they provide an explanation for the stresses, strains and symptoms of life, and an explanation that almost invariably avoids any of the possible self blame, stigma and guilt of those diagnoses that more conventionally minded doctors use.
Surprisingly, in spite of the harm some treatments can cause, even if it is only by delaying access to effective medical treatment, few people seem tocomplain about these therapists. It's a form of cognitive dissonance. Or perhaps it is just too painful to realise that the kindly, polite, charming doctor with the smart consulting room, the latest gadgets, and the utter conviction that he or she really does understand the cause of your problems is really giving you things you don't need for problems you don't have. And so the swings that you gain in having your complaints listened to and legitimised are lost on the roundabouts of continuing ill health and dependency on doctors.
Anything for the Quiet Life.
I doubt there are few occasions in which doctors are more pressured to collude with their patients when the latter pushes across the desk a form thatneeds to be signed. I asked my wife, an inner city GP, what forms she has to complete in a typical week. OK, she said, there are the sick notes. I hadthought of that. And fitness for work. Fair enough. And fitness to drive. OK, well, I can see that. But she said, yesterday I had to certify someone as fit to fly as a passenger. Oh yes, and last week it was fitness to fly as a pilot, and on it goes. There are the insurance medicals and forms that the readers of this document will be more than familiar with. But gun ownership? Do doctors really know who is suitable to own a gun? I was once asked by a government department to devise a screening form to assess this. I proposed one question "do you want to own a gun?" and if the answer was positive, then you were unsuitable. But GPs are supposed to know who is suitable to own a gun, just as they are supposed to know who is suitable to foster or adopt.
And then there are the exemptions a GP needs to certify that you are unable to use a seat belt, pay off your debts or your council charge, need longertime in exams, or not be able to sit them all together. So the potential flash points mount up forms to say you are not fit to go to court, do community service, or obey a probation order. Last week my wife had to certify that someone was fit to use a gym (and there was I thinking the reason you used a gymwas because you were unfit).
Most weeks my wife has to certify that a photo is a true likeness of one of her patients. And in nearly every case there is little to be gained and everything to lose by refusal to complete any of these forms. So who can blame the doctor for colluding with the patient? The GP may harbour lingeringdoubts about why nearly every child getting extra time in exams is middle class, or is adult attention deficit disorder really a reason not to be able to comply with a community treatment order? Or is it really work stress' when the doctor knows all about the divorce and difficulties with the kids? But what the heck if I don't sign the chances are they will complain, and that will involve weeks of paperwork, bad publicity and an uncertain outcome. So it's anything for the quiet life.
Where did this all start? It all began with the introduction of Social Security benefits in Germany, particularly with the Sickness Insurance Act of 1883 in Germany under Count Otto Von Bismark. Clearly, if benefits were to be introduced a gatekeeper would be needed, and doctors were willing to undertake that role. When the legislation came to Britain doctors were similarly willing. Many would argue that doctors saw themselvesas defenders of the State against the potential hordes of claimants of these new benefits.
So I am afraid we doctors have brought this on ourselves. But what no one envisaged was the sheer size of what would become the welfare state, nor the resources that it would eventually command. Now collusion is just about the only way my wife can cope with the bureaucracy, and who can blame her?
Conclusion.
So doctors collude with their patients all the time. It's not such a bad thing after all. When I (briefly) trained in psychotherapy I was taught that, whatever else, we should show positive therapeutic regard for our patients. Or to put it simply, we are on the patient's side. Sometimes in psychiatrywe are the only people who are. If we are not for our patients, who else is going to be?
And often that means collusion in one shape or form. Sometimes we don't always "tell it as it is", if we pick up cues that a person really doesn't want to know the worst, at least not now. Sometimes we endorse diagnostic labels of dubious provenance but what does that matter if at least it enables the person to get help? And so what if we sign a person off with work stress'? After all, their employer may well not be a paradigm of virtue, and the break might at least enable the patient to patch up an equally dodgy marriage.
But there are limits. Dubious labels can also lead to equally dubious treatments. Collusion is also easier to defend if one party gains nothing from the encounter but when the doctor reaps a rich reward in fees, it is harder to claim a moral paternalistic high ground.
Professor Simon Wessely.
Professor Simon Wessely
Simon Wessely is Professor of Epidemiological and Liaison Psychiatry at the Institute of Psychiatry, King's College London, and Honorary Consultant Psychiatrist at King's and Maudsley Hospitals. He started his psychiatry training at the Maudsley in 1984, and has not really left Camberwell since, other than a year at the National Hospital for Neurology, and a year studying epidemiology at the London School of Hygiene.
Simon's research interests are in the grey areas between medicine and psychiatry, clinical epidemiology, psychiatric injury and military health. His first paper was called "Dementia and Mrs Thatcher", but since then he has published over 500 papers on many subjects, including epidemiology, post traumatic stress, psychological debriefing, chronic fatigue syndrome, history, chronic pain, somatisation, Gulf War illness, military health and terrorism.
Simon is also Director of the King's Centre for Military Health Research Unit at King's College London. In 2006 the unit published the first resultsof a study of the physical and psychological health of 12,000 UK military personnel, half of whom have served in the Iraq conflict.