reviews
BOOKS • CD ROMS • ART • WEBSITES • MEDIA • PERSONAL VIEWS • SOUNDINGS
Theater of Disorder: Patients, Doctors, and the Construction of Illness Brant Wenegrat Oxford University Press, £26.50, pp 292 ISBN 0 19 514087 7 Rating: ★★★★
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n this bold, intellectual tour de force Brant Wenegrat argues that many of the more exotic neuroses of our time (multiple personality disorder, alien abduction, and recovered memory syndromes) and the transient possession states of “traditional” cultures are really forms of acting—commonly executed by those who are disenfranchised. “The truth is that some psychologists, psychiatrists, and physicians have made their careers directing role enactments,” he says. This critique builds upon “normal” social psychology, demonstrating the extent to which human behaviour can be directed
Medicine Matters After All: Measuring the Benefits of Medical Care, a Healthy Lifestyle, and a Just Social Environment John Bunker The Nuffield Trust, £12, pp 120 ISBN 0 11 702 728 6 See www.nuffieldtrust.org.uk/ public/current/current.htm for ordering details Rating: ★★
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hich should we spend more on: medicine, health promotion, or social reform? In this monograph, John Bunker attempts to show why the government should make greater investments in medicine in order to improve the nation’s health. 1282
by social cues. More importantly, humans lack insight into their changes of direction, elaborating excuses for their changed opinions, and they act differently (and believe differently) when they get new social roles. Hence, the poacher not only acts the gamekeeper, he thinks like him. In the medical sphere, Wenegrat identifies characteristics of enacted “illnesses.” These disorders lack pathognomonic physical signs. Their incidence is likely to wax and wane with fashion. A small group of motivated clinicians will “diagnose” a disproportionate number of cases. The same disorders may disappear abruptly, without biological explanation; and they may be disseminated by the media. Patients learn what symptoms are required. Wenegrat provides a compelling argument for how hysteria (dissociation and conversion) grew out of medieval accounts of spirit possession; and for how multiple personality disorder emerged from 19th century literary preoccupations with dual identity—for example, The Strange Case of Dr Jekyll and Mr Hyde. He returns repeatedly to the characteristics of possession states encountered in non-industrial, “traditional” cultures. It is possible to identify two forms of possession: central and peripheral. In the
former, an authoritative spirit—perhaps a deity or an ancestor—possesses a member of the ruling class. Such possession is a privilege. However, in peripheral possession, malevolent demons or jinns take over members of the lower orders. The former give rise to transient disturbance, during which (normally) transgressive behaviour is permitted, in the expectation that it will stop when social appeasement, in the form of a material or emotional concession to the underdog, has been made. Many of the Western neuroses referred to above resemble peripheral possession states; they arise among those who are disenfranchised and dispossessed. But our response is different to that of traditional healers; instead of making concessions, we are irritated by people who are “putting on an act.” There are many subtleties to Wenegrat’s argument and much that should impel future research. Perhaps the most thought provoking implication of his logic is the following: “The difference between the malingerer and the patient who sincerely acts an illness role may be less a matter of the latter’s relative honesty than his relative lack of insight.”
But the author’s aims are arguably less engaging than his methods. Selecting a handful of individual medical interventions and using data for disease incidence and intervention efficacy, Bunker calculates the decreases in population-level mortality and morbidity that can be attributed to each intervention. Limiting his analysis to the populations of Britain and the United States, Bunker informs us, for example, that we have all gained an average of six months additional life expectancy thanks to medical treatments for hypertension alone. Furthermore, since these same treatments have significantly reduced the incidence of non-fatal, but life limiting, strokes and myocardial infarctions, our average quality of life has also been improved. Nothing suggests that Bunker’s computations are anything less than objective. However, the bias of this physicianmathematician becomes evident in the presentation of his figures (he memorably refers to iatrogenic deaths as “the failure in medical care to gain a further six to twelve months of life expectancy”—a nice spin) and the purpose to which he puts his findings.
Bunker calculates the gains in average life expectancy that could occur if all the population’s unhealthy personal habits were corrected and if all health inequalities were eradicated (gains of two and three years respectively). However, he has little faith in either health promotion or social reforms as means to achieve these potential gains. Instead he asserts that “the government’s priority to reduce the death rate from cancer, coronary heart disease, accidents, and from suicide and trauma is, by contrast, a realistic and attainable target for medical care.” His calculations may be objective, but these conclusions are subjective and speculative. Besides, greater investment in medical care may offer a quick route to meeting government targets, but it is unlikely to reduce the widening inequalities in health between rich and poor. While the prospect of greater health service funding will appeal to many of us, could we really endorse a government spending policy that prioritised population life expectancy over social reforms and the possibility of greater social justice?
Sean A Spence clinical senior lecturer in psychiatry, University of Sheffield
[email protected]
Andrew Moscrop final year medical student, Edinburgh University
BMJ VOLUME 324
25 MAY 2002
bmj.com
reviews
Camera Obscura By Lorenzo DeStefano, based on The Inman Diary, by Arthur Crew Inman
IVAN KYNCL
Directed by Jonathan Miller Almeida Rehearsal Rooms, 108 Upper Street, Islington, London N1, until 8 June 2002 Theatre Royal, Bath, 11-15 June 2002 Theatre Royal, Winchester, 18-22 June 2002 The Oxford Playhouse 25-29 June 2002 Rating: ★★★ A megalomaniac, a bigot, and an extremist: Arthur Inman played by Peter Eyre
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rthur Crew Inman was an American eccentric who lived in Boston and died in 1963 at the age of 68. He was hypochondriacal and photophobic, believing that daylight could damage his eyes. The merest glimmer through the curtains would have been a source of extreme terror for him. This and many other afflictions led to his self confinement in his heavily draped apartment for most of his life. He also bought the flats above, below, and next door to shield himself from noise. Camera Obscura, a deep and moving play about Inman’s life, is based on diaries that he kept—155 volumes and 17 million words. Inman had insisted that his wife deposit the
diaries in a vault, for he was terrified of losing them should fire break out in the apartment. They were published posthumously after a professor of English and American literature spent seven years editing them to turn them into a more manageable 850 000 words. The play portrays Inman’s ruminations on illness. As well as believing that light is poison, he has sciatica and moves around his apartment with the aid of a wheelchair. He has various random pains and aches and is a raging insomniac. Both he and his wife, Evelyn, swig from a bottle of liquor and in addition he munches on pills for relief.
Peer review In this week’s BMJ, Peter Bacchetti complains about another side of
WEBSITE OF THE WEEK
Marcus Müllner BMJ marcus. muellner@ univie.ac.at
peer review: finding errors when they are not there (p 1271). All those involved in peer review certainly know about the shortcomings of the process, but I am not so sure if the majority of readers are so aware of these shortcomings. Often I hear such questions as “hasn’t this article gone through peer review?” A visit to www.ama-assn.org/public/peer/peerhome.htm might serve as an eye opener. The Journal of the American Medical Association and the BMJ Publishing Group organise a conference on peer review every four years—it’s a bit like a biomedical publishing version of the Olympic Games. Unfortunately, the conference website is not very entertaining—the pages mainly consist of text as the topic doesn’t lend itself to interactivity. You might find, however, interesting information on what it could mean to be a second, third, or last author, or what makes a good referee. The peer review process appears to be a threatening and rather intangible animal to many journal contributors. Accordingly, the Committee on Publication Ethics (COPE, www.publicationethics.org.uk) states that all scientific journals should be explicit about their peer review process. Now comes the interactive part: try to find a description of the peer review process of your favourite journals. I am not sure whether this will come as a surprise but if most of the major general and specialist journals mention their peer review process at all, they do so only in vague terms. Those that are explicit about it include The Annals of Internal Medicine (www.annals.org/shared/ author_info.html) and the Canadian Medical Association Journal (www.cmaj.ca/misc/ifora.shtml#rev), not forgetting the BMJ (bmj.com/advice/ 30.html). Funding bodies such as the Medical Research Council (www.mrc.ac.uk/index/funding/funding-specific_schemes/fundingassessment_process.htm) and the United States’ National Institutes of Health (grants1.nih.gov/grants/peer/peer.htm) provide even more detailed information. After struggling your way through all this information it still might not be terribly clear what will actually happen to your paper. In the case of open peer review, you know at least afterwards what happened to your paper, but there are certainly other good reasons for opening the process (bmj.com/cgi/content/ full/318/7175/4).
Arthur and Evelyn are obviously devoted to each other, but each has their indiscretions. The play explores the complexity of their relationship. Arthur would advertise for young girls who would come to his apartment to talk to him to keep him amused. He would fondle and have sex with those who allowed it, and most did. Evelyn would turn a blind eye. Meanwhile, she had been seeing her husband’s doctor for years. When Inman finds out, he has the audacity to feel wounded by the discovery. The doctor is a pivotal character. He panders to Inman’s illnesses and provides medication, manipulates Inman’s back, and appears genuinely sympathetic. Is this merely a front to allow him to remain close to Inman’s wife? The play is full of ambiguities. Inman is a megalomaniac, a bigot, and an extremist, and yet he is also a charming and admirable character. His wife, his “talkers,” and most of his staff clearly adore him. However, at times his attitudes and obsessions are truly repulsive. It is a challenge to watch and spot Inman’s delusions and his fiction. Camera Obscura is an interesting yet somewhat disturbing exploration of illness, of health beliefs, and of the reactions from family, friends, and professionals. Inman is content to remain severely physically limited, and those around him accept it without a search for a cause. His entire bizarre lifestyle—the drapes, the wheelchair, the pills—was hypochondriasis writ large, yet it appears that for whatever reason no one, not even Inman’s doctor, saw it like that. The London venue, the Almeida Rehearsal Rooms, is small, with a capacity of only 50 (not particularly comfortable) seats. Yet in a way this enhances rather than detracts from the experience. It creates a sense of awkward intimacy, which is appropriate to the play. Inman is, literally, too close for comfort. Inman took his own life. He was clearly mentally ill but, after his death, his wife disputed this suggestion. Watching Camera Obscura, I just couldn’t help wondering how Inman managed to suck everyone around him into his darkened world. Anna Ellis BMJ Clegg scholar
BMJ VOLUME 324
25 MAY 2002
bmj.com
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reviews
BOOKCASE The United Kingdom has one of the fastest growing rates of obesity in Europe. One in five adults is now classified as obese. More and more evidence points to the cause being a complex mix of genetic and environmental factors. Four books, each with a different style and aimed at a different audience, should make managing obesity a little easier. d Obesity and Overweight Matters in Primary Care (R Chambers, G Wakely, Radcliffe Medical Press, £14.95, pp 178, ISBN 1 85775 514 6) gives a good, if somewhat overzealous, overview of the options available. It outlines behavioural and dietary approaches, drug and alternative medicine possibilities, and surgical options. What makes this book unusual is the inclusion of chapters on clinical governance and professional development plans. Also unusual are the end of chapter “reflective exercises,” which ask you to talk to obese patients about how it feels to undergo surgery or to undertake a SWOT (strengths, weaknesses, opportunities, and threats) analysis of your practice’s approach. d For those who want a more indepth, but not too technical look at the consequences of obesity, Management of Obesity and Related Disorders (P Kopelman, ed, Martin Dunitz, £29.95, pp 258, ISBN 1 85317 914 0) would be a good choice. It provides a direct, clear, and matter-of-fact approach. The relation of obesity to physical health makes up just over half the book and provides many references to follow up. The second half of the book details all the management options, such as behavioural therapy, balanced eating, pharmacological approaches, and surgery. d Obesity and Weight Management in Primary Care (C Waine, Blackwell Science, £14.95, pp 118, ISBN 0 632 06514 1) concisely provides all the basic information you need. The bullet style approach makes for easy reading. It has a particularly good chapter on the drug treatment of obesity, outlining the evidence from trials with the anti-obesity drug orlistat. Body mass index charts at the back also make this a good all round, “quick flick,” evidence based reference book. d Evaluation and Management of Obesity (D Bessesen, R Kushner, Hanley and Belfus Inc, $29, pp 190, ISBN 1 560 53469 9) has a distinctly American feel. Compared with the other books it provides the kind of information that patients actually ask about. The different types of diets and diet books are reviewed and non-prescription products such as caffeine, green tea, and chromium picolinate are discussed in an evidence based way. There is a good chapter on obesity web resources at the end. Alex Vass editorial registrar, BMJ
[email protected]
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Chronic fatigue syndrome guidelines spark media row Value of evidence based medicine at centre of dispute
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media furore erupted even before long awaited clinical practice guidelines for chronic fatigue syndrome were published in Australia. “Sick and tired patients in uproar” blared one front page headline in a leading daily newspaper. “Patients slam guidelines on chronic fatigue syndrome” greeted readers of one of the medical news magazines. The chairman of the ME/CFS Association of Australia, Simon Molesworth, was quoted as saying that the guidelines trivialised the condition, blamed sufferers, and would encourage misdiagnosis, inappropriate medical care, and misconceptions about the illness. He was also quoted saying that the Royal Australasian College of Physicians, which developed the guidelines, and The Medical Journal of Australia, which published them, could be held legally liable if patients were made sicker as a result of doctors following them. In the eight days after the first stories appeared, Mr Molesworth, a prominent Queen’s Counsel used to dealing with journalists, gave close to 30 media interviews. Most stories gave greater weight to his concerns—that the document portrayed CFS as a largely psychiatric problem and didn’t take account of individual patients’ needs— than to the actual content of the guidelines. Some media coverage also reflected simplistic notions that illnesses were either biological or psychological, and did not acknowledge that, as the guidelines note, the management of any chronic illness required consideration of psychological and social issues. “In fact the guidelines didn’t convey the impression that the media reports would suggest that they did,” says RACP president Professor Richard Larkins. “My perception was that the coverage was trying to stir up controversy rather than trying to get to what the guidelines actually said and how it related to the concerns of the consumer organisations.” Generally, the media gave little emphasis to the views of the guideline authors—the voice of the Consumers Health Forum representative on the guidelines committee, Craig Ellis, was rarely heard. Mr Ellis, who consulted widely with other people with CFS during the six years of the guidelines process, agreed with their publication and said that the committee had mostly accommodated consumer concerns about earlier drafts.
Immunologist Rob Loblay, co-convenor of the guideline working group, believes that the media coverage was positive in that it raised awareness of the guidelines, but says it also may have reinforced negative stereotypes about the condition. “The other downside was that it was attempting to polarise views and to make out there was a huge dispute between consumers as a whole and the medical profession as a whole whereas in fact the dispute is only a very narrow one,” he says. In the end, however, the headlines may have helped bring the consumers and profession closer together in some ways. Several weeks ago, Mr Molesworth asked the MJA not to publish the guidelines—a request the journal’s editor, Martin Van Der Weyden, described as “unprecedented in scientific and clinical publishing in Australia.” But following a recent luncheon meeting between Mr Molesworth and Professor Larkins, the MJA may soon receive a joint letter from the pair. Mr Molesworth says it will outline areas of agreement on the guidelines, including that the illness is serious and real, that there is little or no proof of a psychiatric aetiology, and that further research is needed. Even though the dust now may be settling on this particular controversy, it has raised some broader issues that will not be so quickly resolved. Foremost is the divergence of views between consumers and the mainstream medical profession about what constitutes evidence. Consumers felt frustrated that the evidence based process of guideline development left little room for inclusion of their personal experiences. The Consumers Health Forum’s executive director, Helen Hopkins, agrees: “It’s a bit of a problem that guideline development focuses very much on the evidence base whereas consumers do have very real experiences that need to be put forward and acknowledged.” It is perhaps inevitable that the media will highlight divisions and conflict, especially when one of the key players is as articulate as Mr Molesworth, whose young son had CFS. But the coverage was also a reflection of the anger and frustration that many people with CFS and their families feel about their care. According to Dr Van Der Weyden, it also reflected the scientific uncertainty surrounding the condition. One of the lessons from the furore, says Dr Loblay, is that far more could be done to improve the care of CFS patients, especially adolescents: “Our services for the care of adolescents with this disorder are abysmal.” Melissa Sweet freelance journalist who specialises in covering health and medicine in Australia The CFS guidelines are available at www.mja.com.au
Website extra: the Broadcasting Standards Commission has upheld a complaint against the BBC for unfair treatment of paediatrician Professor David Southall. The full story is available at bmj.com/cgi/content/full/324/7348/DC1
BMJ VOLUME 324
25 MAY 2002
bmj.com
reviews
PERSONAL VIEW
SOUNDINGS
Breaking bad news
I’m a believer
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“Once a man stops believing in God,” said G K Chesterton, “he doesn’t believe in nothing, he believes in anything.” Yeah right, I thought, what would he know? But the Road to Damascus can come in unlikely forms. Being a cynic is not something I’m proud of, as if it’s a skill I’ve refined through years of cold and impeccably logical reasoning. It’s more of a physical trait, like my height and baldness and poor eyesight and incredible sexual potency. If I can’t actually put my fingers in the wounds, I don’t believe. Faith and intellect are uneasy bedfellows; faith hogs the blankets and the hot water bottle, intellect doesn’t want to use condoms etc. But lately I’ve been having serious doubts and it’s all because of bendrofluazide. I’ve been using bendrofluazide since I qualified 20 years ago. Around that time there were mega studies coming out on the treatment of mild to moderate hypertension, with about a zillion patients in each trial, all of which proved the efficacy of bendrofluazide in the prevention of stroke and heart disease. But I’ve never put my fingers in these wounds, because bendrofluazide never seems to work. I can’t remember the last time it actually brought anyone’s blood pressure down, and I always end up having to add in something newer, more expensive, and less academically correct, as well as something to correct the side effects. So the things that I read are perhaps more real to me than the things that I experience; statistics are the substance, reality is only the shadow. In my own way I must believe as firmly as any religious fanatic in the superior reality of things that are not seen. But then some of the best things in life are not seen. I have no visible proof of the many children I’ve saved from serious illness by vaccinating them, nor the many patients who haven’t had an infarct or a stroke because I’ve been prescribing them aspirin. And here I am, still hopelessly in love, still crazy after all these years, still starting patients on bendrofluazide, still desperately wanting to believe, although the sphygmomanometer dial resolutely refuses to budge. The statistics from all those years ago weigh heavier than all those same years of ineffectual treatment; love sees not with the eyes but with the mind . . .
This experience has brought back ady on low fat diet to waiter: “How do memories of an argument some time in the you prepare the chicken?” Waiter: mid-1950s between myself, then a trainee “We give it to them straight, madam. psychiatric social worker, and a medical stuWe tell them: ‘You’re going to die.’ ” dent. The student insisted that a patient who Early in 2000, I noticed a change in my had a terminal illness should on no account speaking voice. First it went deeper, then be told. Young and idealistic, I argued that hoarser, and then it lapsed into a croak. death was something that people should be Gradually it became worse, began to slur, given the chance to accept with courage and and even occasionally to fail me altogether. dignity. I started on a round of doctors, ending These days the arguments in favour of up, at my request, with a neurologist who maximum openness, frankness, and the located a problem in my tongue. He was cirsharing of information are well known and cumspect and parried all my questions but largely accepted. At least in theory. If it has did not discount my fears. He ordered a lot now become generally accepted that a more tests, the last a lumbar puncture. Each patient has the right to know, it seems that time I toiled up to that hospital, I was doctors are not always credwondering if I would hear ited with much skill in this the diagnosis I most feared, role. the one I had described to The GP said “I’ll pass on a curious my general practitioner as something about observation I’ve made “the worst scenario.” about doctors in this last Is waiting the hardest motor neurone fortnight,” said the Guardian time of all? I think so now journalist Jill Tweedie when and I thought so then. disease as she left. she was ill with motor Whatever the outcome, I Or had I neurone disease. “When wanted the time to come they are about to tell you when all would be known. I misheard? decided not to share my whatever it is they think growing suspicions with my family—after all, you’ve got, and they gaze blankly at you as I could be wrong. I saw myself now in a you enter the room, get your name wrong, double role, not only the one who would look mildly bored or rather tetchy, thank receive the bad news but also the one who your stars, for the chances are there is nothwould have to break it to husband and chiling much amiss. But the day they bounce up dren. I mentally rehearsed how I was going from behind their desk, rubbing their hands, to do this. As it turned out, I did not have to. full of chat and banter—man, you’re dead.” During this time, I had another unreJournalist John Diamond, who died last lated health problem and the locum GP who year from throat cancer, supposed that after visited said something about motor neurone some years of doling out bad news in disease as she left. Or had I misheard? Or around 60% of cases, doctors treating cancer was she only talking about a possibility? Or would have found a way “somewhere was she reading my mind? She had gone between the mawkish and the unnecessarily and it was too late to attempt to croak out a brusque which would serve them comfortquestion. ably in the majority of cases.” He added: “I The next day I was sent back to hospital suppose it is a testimony to my doctor that for investigation of this unrelated problem he gave us the news, white faced, nervous, when a doctor said in passing that he underwith eyes downcast . . . as if it was something stood that I was also seeing the neurologist both unsayable and already said.” for motor neurone disease. I did not think I Although the bearers of bad news are no had misheard this time but one of my longer killed or whipped, the task is still daughters was present and I did not want to stressful for all concerned—for doctors as draw attention to this throw-away remark. well as patients and relatives. Family Not yet, not till I knew more and felt more members may feel that it is their duty to take prepared to deal with it. charge—and as they struggle to protect a It took more than another week of calls loved one from suffering, they are also to the neurologist’s secretary asking for an protecting themselves. The public at large appointment, or, failing that, a telephone wants reassurance that death is not a call before he finally phoned and spoke to horrible spectre but something that can be my husband. Motor neurone disease, he accepted and faced, even with serenity. said, was such a serious diagnosis that he Those who can go some way to providing could not give it out to a patient without this reassurance can be said to be leaving being absolutely sure. one last gift. If you would like to submit a personal view please send no more than 850 words to the Editor, BMJ, BMA House, Tavistock Square, London WC1H 9JR or email
[email protected]
BMJ VOLUME 324
25 MAY 2002
bmj.com
Sheila Thompson The author was a social worker, group analyst, writer, and academic. She died on 26 March 2002.
Liam Farrell general practitioner, Crossmaglen, County Armagh
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