End-of-life decisions and conflicts of interest

End-of-life decisions and conflicts of interest

CORRESPONDENCE 1 2 3 4 5 Green PHR, Jabri B. Coeliac disease. Lancet 2003; 362: 383–91. Bürgin-Wolff A, Hadziselimovic F. Screening tests for coel...

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Green PHR, Jabri B. Coeliac disease. Lancet 2003; 362: 383–91. Bürgin-Wolff A, Hadziselimovic F. Screening tests for coeliac disease. Lancet 1997; 349: 1843–44. Hadziselimovic F, Bürgin-Wolff A. Coeliac disease. Lancet 1998; 351: 62–63. Bürgin-Wolff A, Dahlbom I, Hadziselimovic F, Petersson CJ. Antibodies against human tissue transglutaminase and endomysium in diagnosing and monitoring coeliac disease. Scand J Gastroenterol 2002; 37: 685–91. Leon F, Camarero C, R-Pena R, et al. Antitransglutaminase IgA ELISA: clinical potential and drawbacks in coeliac disease diagnosis. Scand J Gastroenterol 2001; 36: 849–53.

Authors’ reply Sir—Traditionally, diagnosis of coeliac disease depends on finding a well defined set of histological abnormalities in small intestinal biopsies, and a clinical response to a gluten-free diet, though in some patients the pathological findings are subtle. A Bürgin-Wolff and F Hadziselimovic suggest that positive serologies are sufficient for diagnosis. Since a positive EMA is highly specific for coeliac disease, there is an argument for not doing a biopsy when a positive EMA is encountered in the appropriate clinical setting. However, the presence of EMA is an indication of the CD4 response against gluten in the lamina propria and gives no indication of the state of the epithelium and the CD8 T-cell intraepithelial activation. We do not know the importance of these different immunological events. However, some patients with a positive EMA have normal biopsies1 or minimum mucosal inflammation.2 Whether such patients should be advised a life-long glutenfree diet is difficult to know. Only biopsies allow definition of the histological severity of disease and identification of these minor lesions that need rigorous follow up. Furthermore, EMA have been replaced in many commercial laboratories by the tTG ab, which seems to lack specificity for coeliac disease—tTG ab against human tissue can, for example, be present in patients with severe heart failure3 and chronic liver disease.4 Biopsies can also encourage compliance with the gluten-free diet that must be followed after diagnosis with coeliac disease. Though necessary for life, the diet is not an easy one to adhere to, since wheat is ubiquitous in the modern diet. Compliance among adolescents was greatest in those who underwent multiple biopsies in childhood.5 Finally, when an adult is encountered who, after the diagnosis of coeliac disease, does not respond to the

gluten-free diet, review of the original diagnostic biopsy is an integral step in their assessment. For these reasons we believe a biopsy confirmation of disease is necessary. *Peter H R Green, Bana Jabri *Columbia University, NY 10032, USA (PHRG); University of Chicago, Chicago, IL, USA (BJ) (e-mail: [email protected]) 1

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Picarelli A, Maiuri L, Mazzilli MC, et al. Gluten-sensitive disease with mild enteropathy. Gastroenterology 1996; 111: 608–16. Kaukinen K, Maki M, Partanen J, Sievanen H, Collin P. Celiac disease without villous atrophy: revision of criteria called for. Dig Dis Sci 2001; 46: 879–87. Peracchi M, Trovato C, Longhi M, et al. Tissue transglutaminase antibodies in patients with end-stage heart failure. Am J Gastroenterol 2002; 97: 2850–54. Vecchi M, Folli C, Donato MF, Formenti S, Arosio E, de Franchis R. High rate of positive anti-tissue transglutaminase antibodies in chronic liver disease: role of liver decompensation and of the antigen source. Scand J Gastroenterol 2003; 38: 50–54. Mayer M, Greco L, Troncone R, Auricchio S, Marsh MN. Compliance of adolescents with coeliac disease with a gluten free diet. Gut 1991; 32: 881–85.

Ethics and research in developing countries Sir—Khabir Ahmad’s News piece (Aug 23, p 627)1 about the 2nd Symposium on Ethical Issues in Health Research in Developing Countries was most welcome, since it emphasised the absence and ineffectiveness of ethics review committees in many developing countries. As more and more trials are undertaken in these countries, there is a need to ensure that mechanisms are in place to protect participants. Also important, though it has received less attention, is the fact that even when ethics committees are properly constituted, they can be constrained from working properly by the sheer imbalance of power; an ethics review committee in a developing country might find it difficult, for example, to be objective about research that holds promise of collaboration with prestigious institutions in the developed world. In the poorly equipped, under funded, and increasingly isolated research communities in many developing countries, there is often a temptation to take on research collaborations that will yield training opportunities, equipment, and the promise of publications in prominent journals, even when

the benefits to participants are less clear. Furthermore, health workers are held in high regard in many less-developed countries, raising the question of whether the traditional methods of obtaining informed consent are appropriate in these settings. These issues need serious consideration and, hopefully, forums like the 2nd Symposium will provide guidance and opportunities for discussion. Ike Anya Bristol North Primary Care Trust, King Square House, Bristol BS2 8EE, UK (e-mail: [email protected]) 1

Ahmad K. Developing countries need effective ethics review committees. Lancet 2003; 362: 627.

End-of-life decisions and conflicts of interest Sir—Agnes van der Heide and colleagues (Aug 2, p 345)1 note that between a quarter and half of all deaths that occurred in six European countries between June, 2001, and February, 2002, were the result of end-of-life decisions made by doctors. The most frequently made of these decisions was to withhold treatment, which was used 20–230 times more often than euthanasia and physician assisted suicide, combined. Doctors did not discuss the option of withholding treatment with 8–94% of patients whom they managed in this way. These figures raise questions. Should, for example, doctors who withhold treatment be allowed to profit from their patient’s death; surely a conflict of interest? The EURELD report is silent with respect to such conflicts of interest, though previous published work informs us of the situation in the Netherlands and Switzerland; Dutch caregivers are forbidden by law to benefit personally from the death of their patients,2,3 whereas Swiss doctors can be both doctor and beneficiary of the same patient.4 How does the law stand in the other four countries—Belgium, Denmark, Italy, Sweden—studied by van der Heide and colleagues? George Hug 8305 Blome Road, Cincinnati, OH 45243, USA (e-mail: [email protected]) 1

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van der Heide A, Deliens L, Faisst K, et al. End-of-life decision-making in six European countries: descriptive study. Lancet 2003; 362: 345–50. Pijnenborg L, van der Maas PJ,

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van Delden JJ, Looman CW. Lifeterminating acts without explicit request of patient. Lancet 1993; 341: 1196–99. Pijnenborg L, van der Maas PJ, van Delden JM, Looman CW. Lifeterminating acts without explicit request of patient. Lancet 1993; 342: 308. Hug G. Sterbehilfe und Interessenkonflikte. Schweiz Med Wochenschr 1997; 127: 79–81.

Authors’ reply Sir—George Hug correctly concludes that a large proportion of deaths in the countries we studied occurred after medical decisions concerning the end of life. This finding could be seen as evidence for the increasing role and effect of modern medicine on death and dying, although the amount of time by which life is shortened as a result of end-oflife decisions is limited in most cases. Most end-of-life decisions involve incompetent patients, but even in competent patients the decision remains undiscussed in 8–58% of cases. Hug suggests that end-of-life decision-making might be influenced by the personal benefits doctors could gain from the death of their patients. Apart from Belgium and the Netherlands, none of the studied countries has any legal regulation that forbids caregivers such personal gain, although in Switzerland, assisting in suicide is only permitted if done without any self-interest. In most countries, the ethical codes from professional medical organisations include statements about this issue. Our aim was to provide data about end-of-life decision-making practices in the six countries studied, not to study the motives of doctors engaged in such decisions. Therefore, we cannot make firm inferences about motives or about the role of the doctors’ self-interest—eg, as a beneficiary of their patients or as a doctor who loses income because there is one less patient to treat—in decision making. However, we noted no indication that such self-interest has a great effect on the rates of endof-life decisions in any of the studied countries. *Agnes van der Heide, Luc Deliens, Karin Faisst, on behalf of the EURELD consortium *Erasmus MC, Department of Public Health, 3000 DR Rotterdam, Netherlands (AvdH); Vrije Universiteit Brussel, Department of Medical Sociology and Health Sciences, Brussels, Belgium (LD); University of Zurich, Institute of Social and Preventive Medicine, Zurich, Switzerland (KF) (e-mail: [email protected])

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Health promotion approach for control of Taenia solium infection in Nepal Sir—Héctor H García and colleagues (Aug 16, p 547)1 present an excellent review of Taenia solium cysticercosis. As they state, T solium infection is endemic in less developed countries. We wonder, however, whether the scientific progress they document is useful in the actual control of the disease in such countries. In Nepal, for example, diagnostic tools such as ELISA, CT scans, and MRI scans are available, as is neurosurgery. However, although the rich have access to these technologies, the poor remain vulnerable to infection because basic measures to prevent it are not in place. Here, we present our health promotion approach for the control of T solium infection, which was introduced during the third Seminar on Food-Borne Parasitic Zoonoses held in Thailand in 2000.2,3 We undertook a series of assessments based on the PRECEDEPROCEED model.4 First, we did an epidemiological assessment, the results of which indicated that cysticercosis is endemic in urban Nepal. We then did behavioural and environmental assessments, from which we noted various areas where work was needed; meat sellers, for example, were unaware of T solium and were selling measly pork (pork containing T solium cysts), and pigs were being slaughtered in open spaces with no safety regulations in place. Based on these findings, we developed behavioural and environmental objectives, which included: training of meat producers and sellers to detect measly pork and avoid selling it; improving pig husbandry to ensure animals are kept in confined areas without access to human faeces; and construction of model slaughterhouses with hygienic standards by 2003. The National Zoonoses and Food Hygiene Research Center (NZFHRC) in Nepal, directed by one of us (DDJ), has so far ran training programmes on zoonoses for 42 meat producers and sellers in Kathamndu valley and for 20 people in the Eastern and 20 in the Central development region of Nepal. Another 60 people in the remaining three developmental regions will receive similar training by March, 2004. We have requested support from donor agencies to help us to improve pig husbandry, and are awaiting their reply. A private, modern slaughterhouse began operation this year in Kathmandu. We have provided

them with technical support for laboratory examination and disease prevention. A second slaughterhouse is under construction. Scientific progress in our understanding of T solium infection is remarkable. What developing countries need, however, is remarkable progress in public-health practices. Basic control measures are more important in the prevention of T solium infection in developing countries than are high-technology, prohibitively expensive, tools. *Masamine Jimba, Durga D Joshi, Anand B Joshi, Susumu Wakai *Department of International Community Health, Graduate School of Medicine, University of Tokyo, 7-3-1, Hongo, Bunkyo-ku, Tokyo, 1130033 JAPAN; Tokyo, Japan (MJ, SW); National Zoonoses and Food Hygiene Research Center, Kathmandu, Nepal (DDJ); Institute of Medicine, Tribhuvan University, Kathmandu, Nepal (ABJ) (e-mail: [email protected]) 1

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Garcia HH, Gonzalez AE, Evans CA, Gilman RH; Cysticercosis Working Group in Peru. Taenia solium cysticercosis. Lancet 2003; 362: 547–56. Jimba M, Joshi DD. Health promotion approach for the control of food-borne parasitic zoonoses in Nepal: emphasis on an environmental assessment. Southeast Asian J Trop Med Public Health 2001; 32 (suppl 2): 229–35. Joshi DD, Poudyal PM, Jimba M, Mishra PN, Neave LA, Maharjan M. Controlling Taenia solium in Nepal using the PRECEDE-PROCEED model. Southeast Asian J Trop Med Public Health 2001; 32 (suppl 2): 94–97. Green LW, Kreuter MW. Health promotion planning, 3rd edn: an educational and ecological approach. Mountain View: Mayfield Publishing, 1999.

Prognosis of diabetes in the developing world Sir—In his Commentary (Aug 16, p 503)1 Edwin Gale questions claims of an emerging pandemic of diabetes. He bases his doubts on an ascertainment study of pharmacologically treated patients with diabetes in Denmark,2 where the increasing prevalence (2·6% per year in men and 4·1% per year in women) is largely explained by decreasing mortality rather than rising incidence. Although he acknowledges the faults in the design of the study in assessing true disease prevalence (largely because of the high proportion of undiagnosed and non drug-treated patients) he is sensible not to dismiss out of hand the existence of a global epidemic of diabetes. Several estimates3,4 of future trends in diabetes prevalence have produced similar figures, corresponding to an approximate global doubling in numbers by 2025. These increases are

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