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Don’t Fence Me In. From Curse to Cure: Leprosy in Modern Times Tony Gould Bloomsbury, £20, pp 420 ISBN 0 7475 7510 X Rating: ★★★>
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to multidrug therapy. For readers not conversant with medical science, the book is a first class introduction to the history of treatment. Gould dwells mainly on occidental missionaries, sisters from the church, and other motivated people of Christian faith who served the cause of leprosy patients. Unfairly he makes no mention of Indians such as Dharmendra, Khanolkar, Ramanujam, Charles Job, Baba Amte, Ganapati, and Noordeen who contributed greatly to the social uplifting, treatment, rehabilitation, and care of people with leprosy. Many people at various times and on various continents have challenged the stigma and secrecy surrounding leprosy and the legislation facing people with the disease. Mahatma Gandhi, while fighting against foreign rule, was fully aware of the plight of the lower caste untouchables and leprosy patients. Gandhi was probably the only political leader of substance and stature who would dress the wounds of someone with leprosy to teach people compassion and to destigmatise the disease. When called to open a leprosy hospital, he said, “Opening a hospital is an ordinary thing. You call someone to do it. I will come to close it.” In the last chapter Gould seeks to bring out the controversies related to the protective role of BCG, the World Health Organization’s claims of disease elimination, the time taken to achieve this goal, the duration of therapy, and the integration of leprosy services with general health services. Don’t Fence Me In is structured like a thriller, with different chapters set in different places across the globe. Even though I am a clinician and not an avid historian, the book made interesting reading. What makes the book special is the feeling of credibility: Gould has done his research. However, the book would have been more complete if Gould had covered countries such as India, where the ravages of the disease are still felt and where the book’s title, Don’t Fence Me In, would fit more aptly. Let us all join the author in hoping that, despite all the shortcomings and the low level of commitment from politicians and programme managers, leprosy will be eradicated in the not so distant future.
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on’t Fence Me In is an account of the recent history of what many people still regard as a mysterious disease. Tony Gould tells the story of the anguished, fettered soul of a leprosy patient longing to be liberated. Fortunately today, after centuries of terrible existence, it stands almost completely free. This has been achieved through the untiring efforts of committed missionaries, social workers, epidemiologists, microbiologists, leprologists, reconstructive surgeons, and above all the patients themselves, who rose up from a “living hell.” Gould’s narrative contains vivid accounts of the family life and suffering of people with leprosy, and of how complete ignorance about the disease created morbid fear in people’s minds and an extreme degree of leprophobia. These accounts reveal the human tragedy of leprosy. They are heart rending, overwhelming at times, and are aptly summed up as follows: “Leprosy has stood as the most fearful of the human afflictions . . . Leprosy was not a diagnosis, it was a pronouncement of death.
I am suffering in my mind because I cannot suffer in my body.” Tony Gould minutely details even the posture and attitude of the caregivers, most of whom were steeped in ignorance about transmission of the disease and had mistaken beliefs about their altruism. In conveying what life was like for people with leprosy, Gould describes their strained relationships with their parents, their jaded affairs, their sex lives, and their sadism. The author’s stories take us to Norway, Hawaii, the Philippines, Japan, South Africa, Nigeria, Nepal, and Louisiana, but India, one of the countries that now have the largest proportion of leprosy patients, is hardly mentioned. Perhaps Gould felt that the misery and deprivations faced by people with leprosy, these “children of a lesser god,” were the same the world over. Yet public attitudes to leprosy have been shaped not only by the fear of losing fingers and toes and developing a leonine face—the degree of compassion advocated by religion, the strength of family ties, and people’s financial status have also played a part. Gould makes a passing reference to India in relation to its customs, but says nothing about the knowledge and understanding of leprosy shown by the Indian system of medicine. There are descriptions of the disease in ancient Vedic writings and the book Sushruta Samhita, and treatment with chaulmoogra or hydrocarpus oil has been known to Indians for centuries. Developments during the two centuries that Gould reviews include changes in people’s attitudes related to segregation, institutionalisation, and advances in treatment. People went from worshipping snakes or the sun god, or trying to get bitten by a cobra, to giving chaulmoogra oil by rubbing, orally, or by injection, and then from using sulphones
Bhushan Kumar professor of dermatology, department of dermatology, venereology, and leprology, Postgraduate Institute of Medical Education and Research, Chandigarh, India
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Items reviewed are rated on a 4 star scale (4=excellent)
Challenging stigma: Mahatma Gandhi with a leprosy patient
BMJ VOLUME 330
18 JUNE 2005
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reviews
The Surgeon’s Rhyme: A Memoir Michael Barrie The Book Guild, £8.99, pp 192 ISBN 1 85776 813 2 Rating: ★★★★
Bryson City Seasons: More Tales of a Doctor’s Practice in the Smoky Mountains Walt Larimore Zondervan, £13.50/$18.99/$C29.99, pp 320 ISBN 0 310 25287 3 www.zondervan.com Rating: ★>>>
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raumatic echoes of life as a junior doctor: the sickening stench of stale cigarettes and hospital starch strangled sleep. The doctors’ on-call room, placed conveniently between the wards, was the daytime coffee room for nurses and auxiliaries. Clouds of smoke throughout the day lingered in the fabric of the bed. Any comment to the staff brought antagonism, so it was easier to say nothing. These were times forgotten, until Michael Barrie’s The Surgeon’s Rhyme brought flashbacks. He tells his story beautifully with drama, dialogue, and scratch and smell reality. He recreates the scenes so vividly. You remember the night-time nausea when you were woken by the scream of the phone, not knowing if you had slept a few moments or
Doctors as Patients Ed Petre Jones Radcliffe, £24.95, pp 216 ISBN 1 85775 887 0 www.radcliffe-oxford.com Rating: ★★>>
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octors don’t like being on the “wrong” side of the doctor-patient divide. Faced with this prospect their objectivity often crumbles. Some reach for recherché diagnoses at the first hint of illness; many more ignore or downplay their health problems. When help is sought it is often late. Not least, perhaps, because of the bizarre notion that illness is a patient’s prerogative and falling prey to it an admission of weakness. Knowledge of how the health system works, coupled with a desire to retain control and maintain confidentiality, leads doctors to stray from established pathways 1454
a few hours. You can feel the rough fabric of theatre greens and the heat of the delivery room and hear your footsteps on the ward. The one in three rota, the inhumanity, the glamorous drudgery. And you remember education by humiliation, training through exhaustion, and a fear of speaking out. The author is clearly a sympathetic doctor who, as he reflects on his experiences since he qualified in 1991, cares greatly and has thought deeply about medicine. His father, mother, and uncle are doctors, yet he still has a refreshingly naive sensitivity. But medical life has left some scars, and I suspect not all are fully healed. He describes, with humanity and dignity, some remarkable patients. Your heart thumps as he runs to the delivery suite, and your mouth is dry as he sucks the meconium from an infant’s throat, waiting an age for the first breath. You share his feelings on the futility of a life lost, his inadequacy with bereaved parents, and feel the tears. There is no manufactured romantic ending. This is life as it is, and death is an integral part.
of care. This is particularly true of doctors with mental illness, which is the exclusive focus of Doctors as Patients. The book is edited by Petre Jones, a British general practitioner. He frankly describes his own struggle with mental illness in an analysis of the experience of several hundred distressed doctors who have contacted the Doctors Support Network (www.dsn.org.uk), a voluntary organisation set up seven years ago to help UK doctors troubled with “diagnosable” mental illness. Several of these doctors contribute personal stories. Depression dominates, and the bleak self portraits are harrowing; not merely for the descriptions of the inexorable slide down to suicidal despair but for the repeated mention of failure, isolation, shame, self blame, and dread of disclosure. A key message the book draws from these stories is that “general practitioners need to fully understand the difficulty doctors have in consulting them and treat each episode as a potentially high risk consultation.” Underlying predisposition to mental illness plays its part, but Jones lays most of the blame for high rates of mental illness and suicide among doctors squarely at the foot of Britain’s NHS.
The Surgeon’s Rhyme is not about surgery. The title is misleading and fails to capture the suffering, kindness, empathy, anger, frustration, and rawness of the text—although there is a reason for the title, in a theme woven through the text. This is no soft focus nostalgiafest. It is history, but so recent that we should be ashamed. It is vivid, engaging, and a great book. Bryson City Seasons could be from another planet: misty eyed nonsense; Mom and apple pie and God in the consultation. It is a story your granny would read and think medicine was wonderful. While it touches on the claustrophobia of small town America and mentions tricky relationships with medical colleagues and some of the challenges of setting up in private practice, the rose tinted perspective is overwhelming. Even serious injury, personal tragedy, and the bleak realities of family medicine are told as a happy clappy, self satisfied religious sermon. It is well meaning, slightly deluded, shiny eyed evangelical propaganda, though it is well enough written for the personality of the narrator to come through. But I just wanted to take him aside and tell him to get real, waken up, and get a life. The list of other books on the flysheet suggests that the author has got into a groove, but the record is stuck. This book would be more at home in the religious bookshop than in the literature of general practice. Domhnall MacAuley general practitioner, Belfast
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Stressful working conditions precipitate illness in vulnerable individuals. The macho medical culture makes “coming out” with a diagnosis of mental illness difficult. Seeking help is risky in a service where “stigmatisation of mental illness and discrimination against those who suffer from it is rife.” Tackling these factors is not easy and the book’s chapter by chapter (boxed and highlighted) prescription for organisational change is long. It includes providing more flexible and part time work, better occupational health services, and revising the General Medical Council’s procedures to separate assessment of health from assessment of fitness to practise. Jones believes that the best way to overcome prejudice against mental illness is for more doctors to speak out. Those who have successfully weathered its corrosive effects and returned to work have the insight and experience that hold the key to managing this elephant in the profession’s front room. More emphasis on positive stories would have leavened Doctors as Patients. As it is it’s a daunting read. I turned gasping with relief to the few pages devoted to “Ideas for the dark days.” Tessa Richards assistant editor, BMJ
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BMJ VOLUME 330
18 JUNE 2005
bmj.com
reviews
PERSONAL VIEW
SOUNDINGS
Disabled as a medical student, enabled as a doctor
Knight duty
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was involved in a road crash more than the individual concerned is highly likely three years ago, just after I had already to be seeing a doctor, and that it is completed my second year at the mediprobable they have already been asked cal school at University College London. several times that day about their predicaThe crash resulted in substantial lesions in ment by other interested parties. This will my right brachial plexus. As you can lead you to the conclusion that the person imagine, the loss of function in my right arm would probably not appreciate your inquiry has had, and is having, a considerable effect into their visible health problem, unless of on my training in medical school. course you are conveying a necessary piece Needless to say, I have encountered diffiof information. My worry as a disabled perculties, but not nearly as many as I expected. son who will be working within a healthcare Clinical examinations were the first obstacle, setting for most of my working life is that I but I have found that there are alternative will continually be caught astride the fence: techniques to be used. Some examination one minute being in the doctor role and the techniques I am unable to perform, such as next being interviewed about my disability. It palpation of the kidneys. is important that all staff Thankfully, on occasions I have to explain throughout the hospital be when examinations are not aware of this dilemma so possible, pertinent investi- my relatively that the professional integgations can be requested on severe condition rity of those staff members the basis of the patient’s hiswith ongoing health probtory alone. The principal to doctors, nurses, lems can be maintained. restraint on my career is students, and even I cannot understate the that surgery, and other deximpression that my long terous specialties, are no patients and their stay in hospital has had on longer career options; I am families my attitude towards practisfortunate, therefore, to have ing medicine. My first realiinterests in areas of medisation was the astounding cine other than these. sense of anxiety and insecurity patients feel One problem I have encountered is when placed in a hospital bed. As medical being questioned about my arm. (It is held staff we become overly familiar with the permanently in a sling.) Although my arm is sights, sounds, and smells of hospitals, such functionless it looks at first glance to have that we have no comprehension of how only a minor injury, such as a strain. As a alien an environment it really is. Another result I am often quizzed about it on ward revelation I had was the appreciation I felt rounds or during bedside teaching sessions. for the doctors who shared a little of I have to explain my relatively severe condithemselves with me. Often this was a very tion to doctors, nurses, students, and even small, casual interaction, for instance a patients and their families, which is quite an doctor reminiscing about when they were at ordeal for me. I feel that this jeopardises my my stage of their medical career or how they professional identity and my relationship could empathise with me, having coped with with patients. I now make it a point to tell a broken arm years ago. This tended to doctors about my arm as soon as possible restore my confidence and to undermine my and have thus, on the whole, avoided these paranoia about my needs being an irritation difficult situations. I have also learnt through to the doctors. experiences such as this to have prepared Through my time in hospital, my educaphrases that can let people know that I do tion, and my continuing battle with disability, not want to talk about my disability, without I have come to realise that even though making anyone feel uncomfortable. When patients lose much dignity in submitting asked by a patient, “What have you done to themselves to the medical profession (leadyour arm?”—which I feel is a perfectly ing to many intrusions such as examinareasonable question—I often reply, “Oh, far tions, loss of privacy, and admission to too much!” and then change tack. This isn’t hospital) we can help enormously by to say that I never talk openly about my arm; conveying an attitude of respect. For it is I do, but only when I feel the time is approonly through our expression of respect for priate or when there is a good reason. patients as equal human beings that we As doctors it is our job to investigate a obtain their trust, allow them to retain what person’s health status, so it is often difficult dignity they have left, and thus enable them when faced with someone we meet who has to gain a sense of peace in their an obvious physical or health problem to acquiescence. know when, and when not, to ask about it. As somebody who deals with this difficulty Daniel Maughan medical student, Wales College of every day, I feel I am in a position to offer Medicine, Cardiff University, Cardiff some guidance. You need to be aware that
[email protected] BMJ VOLUME 330
18 JUNE 2005
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“’Tis the Lady of Shallot,” she said. “Wouldst thou call upon me?” “No chance,” I said, “new NHS policy, not efficient use of time, etc etc.” She was a quick learner. “I sense an ill humour, and central crushing chest pain radiating to my left arm and all.” “Oh, all right,” I snarled graciously. I parked outside the tower in a temper, accidentally mowing down a unicorn; rather nouveau riche design, I thought. I walked up a winding stair, admiring the mural of Merlin performing an adenoidectomy on The Green Knight, and tripped on some glistening sticky stuff. “Mind the web,” said a voice from behind a huge mirror, which I noticed was linked to external security cameras, “it’s a bugger to spin.” “If I’m going to examine you, you’ll have to come out,” I said. “No man may look on me, else the curse come upon me and I perish.” I drew myself up, feeling rather violated; “I am not a man, madam, I am a doctor. You may consider me an asexual robot, or maybe a mutant.” A beautiful maiden appeared, garbed in voluminous white, a tad too Miss Havisham for my taste. “Oooh,” she said, “aren’t you the handsome young buck.” My reflection in the mirror revealed a specky, balding person. “Don’t meet many guys, do you?” I said. “Now, what about this chest pain?” “I confess ’twas a mere contrivance,” she said, stroking my bald patch meaningfully. “I grow lonely for male company and I figured, what the heck, GPs have to come out when you call, don’t they?” Her expression suddenly changed. “I don’t believe it,” she said peevishly, “you wait a lifetime, and then two guys come along at once.” On the camera screens I saw a knight in armour, brazen greaves glittering in the sun, his mighty stallion befouling the green sward. “Gotta go,” she said. I felt rejected; he was tall, handsome, and heroic, but I drive a Mercedes. Lancelot came running up the stairs. His noble visage was grave and his eyes bugging out. “Come quickly, Doc, the fair maiden . . .” “Yeah, I can guess, she’s all a-swoon, is she?” I checked her out; her chest was heaving prettily in the way only a very alert chest can manage. “It’s a bad case of melodrama,” I said. Liam Farrell general practitioner, Crossmaglen, County Armagh
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