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Rapid Responses: Rapid Responses published:
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![[Read Rapid Response]](/icons/misc/sectionDOWN.gif)
correction
- Wayne F Quillin (10 October 2003)
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Merced to Blackburn
- Margaret E Allen (10 October 2003)
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concordance vs discordance
- manan vasenwala (10 October 2003)
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Lia lives on -- as do the problems her story illustrates
- Janelle S. Taylor (10 October 2003)
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A correction and an uncorrection
- Richard Smith (10 October 2003)
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Wise words on medicine and culture
- Richard Smith (10 October 2003)
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Concordance in India
- Vikas Dhikav (12 October 2003)
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The patient's perspective on medicines
- Margaret C Anderson, Various support groups (13 October 2003)
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Lia doesn’t speak anymore; Was someone listening?
- Dr Lynne, M. Wrennall (21 October 2003)
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Problems with concordance and with being a doctor
- Jocelyn R Forsyth (30 October 2003)
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Wayne F Quillin, Deputy Program Director, US Centers for Disease Control, Central Asia Regional Office 41 Kazbek bi St. Almaty 4801000 Kazkakhstan
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Thank you for bringing Fadiman's book into this discussion. It is a truly marvellous piece. Although it has been a long time since I read it, I believe that the doctors in question were family practitioners, not pediatricians. Competing interests: None declared |
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Margaret E Allen, Physician Assistant East Palo Alto, California
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Although England may not have the Hmong, there is probably as wide an ethnic diversity as that found in California. There is also strong class diversity, and broad cultural differences within it. Obviously we cannot be a member of every group we treat, nor can we pretend to know and understand all aspects of our patients' varying cultures. In the absence of knowledge, the most helpful approach is for us to be open and receptive to patients' fears, pride, and suffering. The old mantra persists: "Listen!" "The spirit catches you and you fall down" should be mandatory reading for all who look after the sick. Dry and dusty Merced easily transposes to wet and windy Blackburn. Although it is a million miles from the tragedy of Lia Lee, I think BMJ readers would enjoy a lovely little book called "Ex Libris: Confessions of a Common Reader" also by Anne Fadiman. Robert McCrum in the Observer called it "Witty, enchanting and supremely well written" and everyone I have given it to agrees. Competing interests: At my suggetion, "The Spirit Catches You..." is now required reading for the Stanford University Physician Assistant course! |
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manan vasenwala, consultant-cardiologist (non-invasive) k.k.heart center, aligarh-202002.india
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while every physician aims to do the best for the patients under their care, concordance remains poor. some of the blame for this lies with the patients which is basically due to lack of knowledge or information. this information has to be sought either from simplified books, or from the net. the treating physician is at most able to tell the major points. however, major cause of discordance is the physician himself. one area which bears severe criticism is the number of pills that the physician expect a patient to take. we are now caring for a patient who may be aged, hypertensive, diabetic, renal impaired, cad, dyslipidaemic etc and you add up the pills and it can fill a full page.thus the compliance is dismal. what can be done is to priotise and improve compliance but using combination drugs and cutting off vitamins, anti-oxidants, fish oils and other unsubstatiated substances in daily use. also i beleive, it is not possible to treat every disease. so pick on those which are going to affect the quality of life only and leave the rest. Competing interests: None declared |
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Janelle S. Taylor, Assistant Professor Department of Anthropology, University of Washington, Box 353100, Seattle WA 98195-3100
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Dear Dr. Smith, Reading your praise of Anne Fadiman's book _The Spirit Catches You and You Fall Down: A Hmong Child, Her American Doctors, and the Collision of Two Cultures_, I cannot help but note a sad irony in your words. You hail Fadiman's book as a portrait of a complete failure of communication, or "concordance," between physicians and their patients, and praise the author for making the reader "understand and respect the views of both sides." Yet your brief synopsis of the book's story contains a major error. You write that "Lia died a few years after an episode of status epilepticus." But she did not die, nor did she recover. Rather, Lia entered a deep coma from which she has never recovered. In that state, she was returned to her family, who continue to care for her at home to this day, more than fifteen years on. Interestingly, many of the doctors who cared for Lia, and knew her case very well indeed, made this same mistake -- they frequently referred to her as having "died." In Fadiman's view, this is symptomatic of precisely the lack of "concordance" that was such a major contributing factor to the disastrous course of her illness. Fadiman writes: To MCMC's residents, Lia continued to be her seizures -- the memory of those terrifying nights in the emergency room that had taught them how to intubate or start IVs or perform venous cutdowns. They always spoke of Lia in the past tense. in fact, Neil and Peggy themselves frequently referred to "Lia's demise," or "what may have killed Lia" or "the reason Lia died." Dr. Hutchinson did the same thing. He had asked me, "Was Lia with the foster parents when she died?" And although I reminded him that Lia was alive, five minutes later he said, "Noncompliance had nothing to do with her death." It wasn't just absentmindedness. It was an admission of defeat. Lia was dead to her physicians (in a way, for example, that she was never dead to her social workers) because medicine had once made extravagent claims on her behealf and had had to renounce them. (Fadiman 1997:256-257) Clearly, we still have far to go, in addressing and overcoming problems of communication between physicians and the people they seek to help. For a critical discussion of how Fadiman's book is being used in teaching in medical schools within the U.S., please see: JS Taylor. The Story catches you and you fall down: tragedy, ethnography, and 'cultural competence'. _Medical Anthropology Quarterly_ 2003;17(2)159-181. Janelle S. Taylor, Ph.d. Assistant Professor Department of Anthropology University of Washington Box 353100 Seattle, WA 98195-3100 USA jstaylor@u.washington.edu Competing interests: None declared |
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Richard Smith, Editor BMJ
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Wayne Quillin thinks that the doctors I referred to in my references to Anne Fadiman's book "were family practitioners, not pediatricians." They are described in the book as "the two supervising pediatricians who served on the faculty of the family practice residency program." I'm not as clear as I should be on the nuances of how the American profession organises itself, but doesn't this make them pediatricians? Or are we both right? Where I was certainly wrong was in writing that Lia was dead. She was in a "persistent vegetative state" (a phrase that seems very insensitive after reading the book), and, when I wrote my piece, I still had two chapters to read. In fact she didn't die by the time the book was published in 1997. Fadiman writes on p 250: "Lia did not die, nor did she recover." Richard Smith, editor, BMJ Competing interests: I'm editor of the BMJ and accountable for all it contains. | |||
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Richard Smith, Editor BMJ
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Anne Fadiman's book is full of insights and repays careful reading, but one section very relevant to this theme issue of the BMJ is a quote from Arthur Kleinman, a psychiatrist and medical anthropologist who chairs the department of social medicine at Harvard. Fadiman told him the story of Lia Lee and asked if he had any "retroactive suggestions for paediatricains." "I have three. First, get rid of the term 'compliance.' It's a lousy term. It implies moral hegemony. You don't want a command from a general, you want a colloquy. Second, instead of looking at a model of coercion, look at a model of mediation. Go find a member of the Hmong community, or go find a medical anthropologist, who can help you negotiate. Remember that a stance of mediation, like a divorce proceeding, requires compromise on both sides. Decide what's critical and be willing to compromise on everything else. Third, you need to understand that as a powerful an influence as the culture of the Hmong patient and her family is on this case, the culture of biomedicine is equally powerful. If you can't see that your own culture has its own set of interests, emotions, and biases, how can you expect to deal successfuly with someone else's culture?" Richard Smith, editor, BMJ Competing interests: I'm the editor of the journal and accountable for all it contains |
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Vikas Dhikav, Resident All India Institute of Medical Sciences, New Delhi-110029, INDIA
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“It is the province of knowledge to speak and it is the privilege of wisdom to listen” -Oliver Wendell Holmes (1809-94), 'The Poet at the Breakfast Table' (1872) ch. 10 As home to world's largest illiterates, concordance is expected to be grim in India; unfortunately there is no objective data to know it. Most of India's tertiary care hospitals see patients many folds to their capacity and doctor patient ratio is 10 times lower than that of developed nations. Concept of health education is alien here, let alone, the education related to drug matters. Most of the patients here can be seen roaming bewildered with huge files and medical records; it makes no sense to them as the doctor has hardly bothered to explain to them what does that all mean. India uses largest number of drug combinations; most of them are irrational and unnecessary. Polypharmacy and self-medications are rules; the worse is patients ask everything related to drugs from chemists rather than doctors. This nation is the largest maker of fake drugs and number of quacks is more than western trained doctors. They not only denigrate modern drugs; but also serve to spread misconceptions, which ultimately lead to weakened physician-patient trust and thereby reduced compliance. Drug companies aren’t interested in imparting education either; over 90% of the package inserts do not contain patient education leaflets and presence of large number of illiterates makes the idea of using patient education booklets particularly unattractive. These are not popular even with educated Indians. The solution lies in strengthening the age-old ties of physician- patient and restore the decreasing trust, listening to the patient, imparting education both to patient and to family members, prescribing rationally, and regular follow up. Competing interests: None declared |
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Margaret C Anderson, retired - non-medical Ludlow, Shropshire, SY8 1RA, Various support groups
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Some reasons for the common reluctance to take medicines seem to have been overlooked:- 1. When health became an industry and patients became customers, they began to apply trading standards to the products on offer - Were these efficacious, safe and cost-effective? The track record for conventional medication does not inspire great confidence. 2. There is considerable public concern that, apart from other considerations, the results of animal testing are of dubious reliability and relevance to humans. 3. The widespread use of manmade chemicals, most of which have had only minimal testing for toxicity and none for other effects, has produced a great many casualties. They have not been counted, learned from or provided for and now form a sizable and growing section of society. Their difficulties can include problems with prescribed medicines. Competing interests: Disabled polio survivor, later poisoned by pesticides and solvents (case recorded) |
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Dr Lynne, M. Wrennall, Honorary Fellow University of Liverpool. Liverpool L69 3BX
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As Richard Smith demonstrates, concordance has come a long way since being a debate about phamaceutical compliance. The story of Lia and her family and the context of misunderstandings is an allegory for many health conversations, not only those pertaining to medicines. It is worth remembering that Lia’s tragedy is a Child Protection story. Indeed most, if not all, Child Protection stories begin in an absence of concordance. They begin with Social Workers, Doctors or other commentators claiming superiority of their truth over the truth claimed by the people on the scene. This is not the only, or the best, way to protect children. Far from it, in the authoritarian model, the child becomes a hostage caught between the warring factions who are euphemistically referred to as “working in partnership.” World views, values and commitments collide in an often unforgettable and unforgiven discord. If the allegations are perceived to be false, the sense of injustice is palpable. Even when allegations are founded, children decry the ferocity of the process which claims it’s raison d’etre in their protection. Many children from around the world have described Child Protection as a process of being stolen. The term “stolen generations” was chosen by the indigenous peoples in Australia and Canada. This theme was also emblazoned on the search for their families of children from Liverpool who were "stolen" by Social Workers during evacuations from the Blitz. If we accept the children’s own language and their right to the reality of their own perceptions “Stolen children. Stolen lives,” epitomises the range of experiences from lost hopes to lost lives, from stolen innocence to stolen truth. Children are still being “stolen” by Child Protection in England. Case law in the European Court supports the view that there are children in England who have been wrongfully taken from their homes by English Child Protection. Even babies, are torn from their Mother’s arms at gunpoint shortly after birth. They are pushed through a care system which violates their rights at every turn. English politicians promise to improve care, but so far, not to stop the wrongful removal of children. What then would concordance mean in the context of Child Protection? Few words, or many words, merely glimpse a process which must define itself through a conversation between equals, premised on mutual respect. Clearly though, concordance in Child Protection could not be an acceptance of child abuse through a misguided cultural relativism which has no benchmark for appropriate behaviour, but it may be an acceptance that Child Protection has also abused those it had a duty to protect. Child Protection would forgo self proclaimed moral superiority and in return would gain the genuine and deserved power which rewards understanding of fellow humans. What could be the opposite of stealing children? Could it be giving birth? In the future which is becoming a reality, the experiences of the past sublimate into a birth which can never be stolen, the birth and rebirth of our ethical selves, of our awareness of what is a decent and acceptable way to treat people and of what must never again be tolerated. And finally one day, through concordance, Child Protection will grow up. Competing interests: As a consultant to the NSW government, I gave advice on how to reduce the number of children enmeshed in the “new stolen generations.” Most of my working life has been spent educating social workers and health professionals. I am currently the coordinator for the Public Health Research Group. |
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Jocelyn R Forsyth, Retired Rosanna, Australia, 3084
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Your editorial, by using an extreme example, illustrates a widespread problem. Both Britain and Australia are, we are told, multicultural societies. It is clear that the starting points of understanding disease(s) and therapy vary radically between cultures. How then is the British (Australian) doctor to cope - or do we have to move to an apartheid of clinical practice with, to parody a dictum of the unlamented ex-regime in South Africa, each doctor practising in his own cultural group area? Further, is there not a conflict between the aspirations of 'concordance' and the needs of such as the mortally ill Franz Ingelfinger (once editor of the NEJM) who reflected on his relief when he got a 'doctor' - rather than a succession of oncologists, psychiatrists, internists? Competing interests: None declared |
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