- Email: [email protected]
Disease surveillance at district level
CORRESPONDENCE
Do we always need to tell patients the truth? Sir—In the past 30 years physicians have changed their attitudes about the communication of the diagnosis to their patients. The tendency in the past to protect patients against emotional distress caused by the breaking of bad news has been replaced by the acknowledgment of the patient’s right to be informed about their condition.1 This acknowledgment has not resulted in any benefit to patients; on the contrary it harms many of them. In the past 18 months, we have seen seven patients who died within 48 h of being told that there is no hope of cure for their illness. These patients were enjoying a normal life despite the fact that they had incurable cancer. There was no apparent cause for their early death apart from the news they had received. Questionnaires, which aim to answer the question of whether or not to inform patients about their illness are irrelevant. It is human nature to try to know the unknown, although this might not be in our best interest.2 It is for the best that we do not know the future or time of death? In many instances life would be a nightmare if the future was revealed. Most people, however, will say that they would rather know the future. Similarly, the wish of patients to know the whole truth about their illness does not mean that it is right for them. As doctors, it is our obligation to make sure that we are acting in the best interest of patients. For example, a doctor who is treating a psychiatric patient might choose not to tell him the facts about his illness to make him feel that he is not suffering from any illness at all. Although this is not the truth, it might be the best option for the patient. *A M F Hassn, A Hassan *Department of General Surgery, Pilgrim Hospital, Boston PE21 9QS, UK; and Ormskirk District General Hospital, Ormskirk 1
2
Saltini A. Communication of bad facts. To inform or not to inform the patient: a choice between 2 alternatives? Recenti Prog Med 1995; 86: 359–66. Oelz O. Truth disclosure in physicians’ dialogue: compassionate lie or merciless statistics? Schweiz Rundsch Med Prax 1996; 85: 440–44.
Human rights and epidemiology Sir—We take issue with the position of Kenneth Rothman and colleagues (Sept 5, p 810)1 in their discussion of whether the mission of epidemiology should include the eradication of poverty.
THE LANCET • Vol 352 • October 3, 1998
The last International AIDS Conference was the first to introduce a community stream. It provided an opportunity for sex workers to meet as an international network of sex-worker organisations. These conference participants evinced unbridled anger about the research done ostensibly in their interest. The participants claimed that women had not known they were research subjects and had not been offered advice about how to avoid contracting HIV-1. Their demand was that there should be no research without the possibility of an intervention and no intervention that does not lead to empowerment. The controversial theme of the conference was Bridging the Gap; a gap to be bridged was between researcher and researched upon. Rothman and colleagues talk about poverty and ask whether epidemiologists have the means to eradicate poverty? With respect, this is not the right question. To focus on poverty alone and its eradication will arrest the work of any professional in any discipline. The more valuable question is how can a knowledge of human rights values enrich decisions about what research is carried out and how it is done. Decades of biomedical and epidemiological research among Australian aboriginal communities have not led to any improvement in the health status of aboriginal people. How much of this research has truly taken account of the priorities of those communities and the potential for research to assist community mobilisation? How much of this research has contributed to a betterment of human well-being? When epidemiological research is undertaken, particularly among communities whose dignity is affronted or who suffer discrimination and are thus not fully able to claim the benefits of societal membership, the research proposal should be assessed alongside relevant human rights criteria. The way a problem is characterised defines the solutions. Social change takes time, but there is a risk with quick technical interventions such as vitamin A capsules for children. The provision of capsules becomes an end in itself, and the issue becomes “lack of vitamin A capsules” rather than a denial of each child’s fundamental rights. The underlying problems remain unaddressed. We do not argue with the provision of distinct services to combat an identified problem in an impoverished environment, because to deny
assistance would simply leave people without support. However, this approach cannot be the sole contribution of the scientific community. There may well be a place for decontextualised epidemiological research, but we would argue that the greater endowment to human wellbeing will emerge from contextualised epidemiological research done in a framework cognisant of and with respect for human rights. *Bebe Loff, Jim Black Department of Epidemiology and Preventive Medicine, Monash University, Victoria, Australia 1
Rothman KJ, Adami H-O, Richopolous D. Should the mission of epidemiology include the eradication of poverty? Lancet 1998; 352: 810–13.
Disease surveillance at district level Sir—T Jacob John and colleagues (July 4, p 58)1 describe an excellent example of effective disease surveillance2 at district level in a developing country, with important lessons for developed countries. The researchers describe prioritised and action-oriented disease surveillance, with case definitions, defined objectives, and provision of regular feedback to the information providers. These are criteria that cannot, with any confidence, be applied to the current statutory notification system for disease surveillance in England and Wales. This system, with its outdated list of notifiable diseases and emphasis on counting numbers rather than on public-health action, seems to be of similar usefulness to the equivalent statutory notification system in Tamil Nadu.1 An audit of notifiable diseases in my own district, South Lancashire, UK, between 1995 and 1997, revealed diseases notified under 106 different names (there are 30 diseases for statutory notification in England and Wales) 3 and that notifications of outbreak-prone diseases took on average 16 days to reach the consultant in communicable disease control. Unlike many developing countries, we have the advantage of a strong laboratory capacity and easy (although underused) access to electronic transfer of information. Our centralised laboratory surveillance network provides a reliable system for recording data on laboratorydiagnosed infections. We must not however, assume that laboratories are carrying out disease surveillance. Surveillance, as described by John and
1153
CORRESPONDENCE
colleagues, provides information for action, and needs involved and informed clinicians. Their surveillance model, if used with similar success in other developing countries, would contribute greatly to improving global surveillance of communicable diseases, 4 a claim that could not be applied to the notifiable disease system in England and Wales. The long-awaited review of the legislation relating to the control of communicable diseases may go some way to addressing the deficiencies of the current notification system. Successful disease surveillance, however, as shown by John and colleagues requires more than legislation. Kenneth Lamden Department of Public Health Medicine, South Lancashire Health Authority, Lancashire PR7 5PD, UK 1
2
3
4
John TJ, Samuel R, Balraj V, John R. Disease surveillance at district level: a model for developing countries. Lancet 1998; 352: 58–61. Klauke DN. Evaluating public health surveillance. In: Teutsch SM, Elliott Churchill R, eds. Principles and practice of public health surveillance. New York: Oxford University Press, 1994: 158–74. Public Health (Infectious Diseases) Regulations 1988. London: HM Stationery Office, 1988 (SI 1988/1546). Heymann DL, Rodier GR. Global surveillance of communicable diseases. Emerg Infect Dis 1998; 4: 19–23.
anaesthesia, were interviewed. 47 (76%) identified two similar bright shades of red as cherry-red (figure, pictures 3 and 5). 15 (24%) associated it with purple and dark shades (figure, pictures 1, 2, 4, 6). The distribution of the expected frequency of cherry-red discolouration followed a bell-shaped curve. Only four (6%) of the doctors gave the correct prevalence of this discolouration (1%), and six (10%) thought this sign was present in all cases (100%). 42 (68%), 14 (22%), and six (10%) of the doctors reported having previously seen none, one to five, and more than five patients with CO poisoning, respectively. No correlation was observed between the estimates given for the frequency of cherry-red discolouration and the number of cases seen in the past. These findings suggest that the term cherry-red is not unequivocal: while to
most doctors it means bright red, to many it means cyanotic shades. Whatever it means to them, most doctors overestimate the frequency of cherry-red discolouration in CO poisoning. Finally, experience— measured as the number of cases previously seen—does not teach the correct prevalence of this rare and vague sign. Bruno Simini Ospedale, 55100 Lucca Italy I thank the colleagues interviewed for answering my questions. 1
2 3
Turner M. The dangers of carbon monoxide. N Engl J Med 1995; 332: 894. Bignall J. Looking the dog in the eye. Lancet 1995; 345: 852. Gorman DF, Clayton D, Gilligan JE, Webb RK. A longitudinal study of 100 consecutive admissions for carbon monoxide poisoning to the Royal Adelaide Hospital. Anaesth Intens Care 1992; 20: 311–16.
1
2
3
4
5
6
Cherry-red discolouration in carbon monoxide poisoning Sir—Cherry-red discolouration of the skin and mucous membranes is an often-quoted sign of carbon monoxide (CO) poisoning.1 Even a veterinarian was reported to have suspected CO poisoning in a dog because of its “cherry-red conjunctivae”, after completing a first-aid course in caring for human beings.2 However, cherryred discolouration in CO poisoning is quite rare: Gorman and colleagues3 report one case in a prospective survey of 100 patients. Are physicians aware of this low prevalence, how frequently do they expect to find this sign in patients with CO poisoning? And what do they understand by “cherry red”? During a week, I asked these questions to all consecutive colleagues I met in Lucca’s Hospital (Italy). The Italian expression rosso ciliegia is the literal translation of cherry-red. 62 physicians (44 men, 18 women; mean age 38 [SD 6] years) from 11 medical and surgical disciplines, including
1154
Which one is cherry-red? Reproduced with permission from Valmori I. Nuove varietà in frutticoltura. Bologna: Edizioni Agricole, 1991.
DEPARTMENT OF ERROR International multicentre pooled analysis of late postnatal mother-to-child transmission of HIV-1 infection—In this article by Valériane Leroy and colleagues (Aug 22, p 597), the website address in the second paragraph of the introduction should have been http://www.unaids.org/unaids/document/epide mio/infant; in table 1, column 1, row 3 should have been Kigali, Rwanda;7 and in the acknowledgments Joanne Embell should have been Joanne Embree. Can HCV infection be cleared?—In the Commentary by Ola Weiland on Aug 29, p 669, reference 7, by Reichard O and colleagues is in press with Scand J Infect Dis. Expression of sequence variants of the endogenous retrovirus RGH in particle form in multiple sclerosis—In this research letter by T Christensen and colleagues (Sept 26, p 1033),
dRNA in the first sentence of the fourth paragraph should read tRNA. The sixth sentence of the second paragraph should read “We analysed PCR products by agarose gel electrophoresis and cloning, followed by dideoxy-sequencing”. The first sentence of the fifth paragraph should read “We also tested multiple sclerosis cell line particle RNAs, purified by our standard procedure with the reported ERV-9-related nested primer set ST1/2 and RT-PCR conditions.4” The first sentence of the eighth paragraph should start “ERV-9-type-C-related sequences”. MSVR in the second sentence of the eighth paragraph should read MSRV.
Etruscan wombs—In this research letter, by G Baggieri (Sept 5, p 790), the end of the first sentence on the second paragraph should read “. . . written by Soranus of Ephesus in the second century AD”.
THE LANCET • Vol 352 • October 3, 1998
Do we always need to tell patients the truth? Sir—In the past 30 years physicians have changed their attitudes about the communication of the diagnosis to their patients. The tendency in the past to protect patients against emotional distress caused by the breaking of bad news has been replaced by the acknowledgment of the patient’s right to be informed about their condition.1 This acknowledgment has not resulted in any benefit to patients; on the contrary it harms many of them. In the past 18 months, we have seen seven patients who died within 48 h of being told that there is no hope of cure for their illness. These patients were enjoying a normal life despite the fact that they had incurable cancer. There was no apparent cause for their early death apart from the news they had received. Questionnaires, which aim to answer the question of whether or not to inform patients about their illness are irrelevant. It is human nature to try to know the unknown, although this might not be in our best interest.2 It is for the best that we do not know the future or time of death? In many instances life would be a nightmare if the future was revealed. Most people, however, will say that they would rather know the future. Similarly, the wish of patients to know the whole truth about their illness does not mean that it is right for them. As doctors, it is our obligation to make sure that we are acting in the best interest of patients. For example, a doctor who is treating a psychiatric patient might choose not to tell him the facts about his illness to make him feel that he is not suffering from any illness at all. Although this is not the truth, it might be the best option for the patient. *A M F Hassn, A Hassan *Department of General Surgery, Pilgrim Hospital, Boston PE21 9QS, UK; and Ormskirk District General Hospital, Ormskirk 1
2
Saltini A. Communication of bad facts. To inform or not to inform the patient: a choice between 2 alternatives? Recenti Prog Med 1995; 86: 359–66. Oelz O. Truth disclosure in physicians’ dialogue: compassionate lie or merciless statistics? Schweiz Rundsch Med Prax 1996; 85: 440–44.
Human rights and epidemiology Sir—We take issue with the position of Kenneth Rothman and colleagues (Sept 5, p 810)1 in their discussion of whether the mission of epidemiology should include the eradication of poverty.
THE LANCET • Vol 352 • October 3, 1998
The last International AIDS Conference was the first to introduce a community stream. It provided an opportunity for sex workers to meet as an international network of sex-worker organisations. These conference participants evinced unbridled anger about the research done ostensibly in their interest. The participants claimed that women had not known they were research subjects and had not been offered advice about how to avoid contracting HIV-1. Their demand was that there should be no research without the possibility of an intervention and no intervention that does not lead to empowerment. The controversial theme of the conference was Bridging the Gap; a gap to be bridged was between researcher and researched upon. Rothman and colleagues talk about poverty and ask whether epidemiologists have the means to eradicate poverty? With respect, this is not the right question. To focus on poverty alone and its eradication will arrest the work of any professional in any discipline. The more valuable question is how can a knowledge of human rights values enrich decisions about what research is carried out and how it is done. Decades of biomedical and epidemiological research among Australian aboriginal communities have not led to any improvement in the health status of aboriginal people. How much of this research has truly taken account of the priorities of those communities and the potential for research to assist community mobilisation? How much of this research has contributed to a betterment of human well-being? When epidemiological research is undertaken, particularly among communities whose dignity is affronted or who suffer discrimination and are thus not fully able to claim the benefits of societal membership, the research proposal should be assessed alongside relevant human rights criteria. The way a problem is characterised defines the solutions. Social change takes time, but there is a risk with quick technical interventions such as vitamin A capsules for children. The provision of capsules becomes an end in itself, and the issue becomes “lack of vitamin A capsules” rather than a denial of each child’s fundamental rights. The underlying problems remain unaddressed. We do not argue with the provision of distinct services to combat an identified problem in an impoverished environment, because to deny
assistance would simply leave people without support. However, this approach cannot be the sole contribution of the scientific community. There may well be a place for decontextualised epidemiological research, but we would argue that the greater endowment to human wellbeing will emerge from contextualised epidemiological research done in a framework cognisant of and with respect for human rights. *Bebe Loff, Jim Black Department of Epidemiology and Preventive Medicine, Monash University, Victoria, Australia 1
Rothman KJ, Adami H-O, Richopolous D. Should the mission of epidemiology include the eradication of poverty? Lancet 1998; 352: 810–13.
Disease surveillance at district level Sir—T Jacob John and colleagues (July 4, p 58)1 describe an excellent example of effective disease surveillance2 at district level in a developing country, with important lessons for developed countries. The researchers describe prioritised and action-oriented disease surveillance, with case definitions, defined objectives, and provision of regular feedback to the information providers. These are criteria that cannot, with any confidence, be applied to the current statutory notification system for disease surveillance in England and Wales. This system, with its outdated list of notifiable diseases and emphasis on counting numbers rather than on public-health action, seems to be of similar usefulness to the equivalent statutory notification system in Tamil Nadu.1 An audit of notifiable diseases in my own district, South Lancashire, UK, between 1995 and 1997, revealed diseases notified under 106 different names (there are 30 diseases for statutory notification in England and Wales) 3 and that notifications of outbreak-prone diseases took on average 16 days to reach the consultant in communicable disease control. Unlike many developing countries, we have the advantage of a strong laboratory capacity and easy (although underused) access to electronic transfer of information. Our centralised laboratory surveillance network provides a reliable system for recording data on laboratorydiagnosed infections. We must not however, assume that laboratories are carrying out disease surveillance. Surveillance, as described by John and
1153
CORRESPONDENCE
colleagues, provides information for action, and needs involved and informed clinicians. Their surveillance model, if used with similar success in other developing countries, would contribute greatly to improving global surveillance of communicable diseases, 4 a claim that could not be applied to the notifiable disease system in England and Wales. The long-awaited review of the legislation relating to the control of communicable diseases may go some way to addressing the deficiencies of the current notification system. Successful disease surveillance, however, as shown by John and colleagues requires more than legislation. Kenneth Lamden Department of Public Health Medicine, South Lancashire Health Authority, Lancashire PR7 5PD, UK 1
2
3
4
John TJ, Samuel R, Balraj V, John R. Disease surveillance at district level: a model for developing countries. Lancet 1998; 352: 58–61. Klauke DN. Evaluating public health surveillance. In: Teutsch SM, Elliott Churchill R, eds. Principles and practice of public health surveillance. New York: Oxford University Press, 1994: 158–74. Public Health (Infectious Diseases) Regulations 1988. London: HM Stationery Office, 1988 (SI 1988/1546). Heymann DL, Rodier GR. Global surveillance of communicable diseases. Emerg Infect Dis 1998; 4: 19–23.
anaesthesia, were interviewed. 47 (76%) identified two similar bright shades of red as cherry-red (figure, pictures 3 and 5). 15 (24%) associated it with purple and dark shades (figure, pictures 1, 2, 4, 6). The distribution of the expected frequency of cherry-red discolouration followed a bell-shaped curve. Only four (6%) of the doctors gave the correct prevalence of this discolouration (1%), and six (10%) thought this sign was present in all cases (100%). 42 (68%), 14 (22%), and six (10%) of the doctors reported having previously seen none, one to five, and more than five patients with CO poisoning, respectively. No correlation was observed between the estimates given for the frequency of cherry-red discolouration and the number of cases seen in the past. These findings suggest that the term cherry-red is not unequivocal: while to
most doctors it means bright red, to many it means cyanotic shades. Whatever it means to them, most doctors overestimate the frequency of cherry-red discolouration in CO poisoning. Finally, experience— measured as the number of cases previously seen—does not teach the correct prevalence of this rare and vague sign. Bruno Simini Ospedale, 55100 Lucca Italy I thank the colleagues interviewed for answering my questions. 1
2 3
Turner M. The dangers of carbon monoxide. N Engl J Med 1995; 332: 894. Bignall J. Looking the dog in the eye. Lancet 1995; 345: 852. Gorman DF, Clayton D, Gilligan JE, Webb RK. A longitudinal study of 100 consecutive admissions for carbon monoxide poisoning to the Royal Adelaide Hospital. Anaesth Intens Care 1992; 20: 311–16.
1
2
3
4
5
6
Cherry-red discolouration in carbon monoxide poisoning Sir—Cherry-red discolouration of the skin and mucous membranes is an often-quoted sign of carbon monoxide (CO) poisoning.1 Even a veterinarian was reported to have suspected CO poisoning in a dog because of its “cherry-red conjunctivae”, after completing a first-aid course in caring for human beings.2 However, cherryred discolouration in CO poisoning is quite rare: Gorman and colleagues3 report one case in a prospective survey of 100 patients. Are physicians aware of this low prevalence, how frequently do they expect to find this sign in patients with CO poisoning? And what do they understand by “cherry red”? During a week, I asked these questions to all consecutive colleagues I met in Lucca’s Hospital (Italy). The Italian expression rosso ciliegia is the literal translation of cherry-red. 62 physicians (44 men, 18 women; mean age 38 [SD 6] years) from 11 medical and surgical disciplines, including
1154
Which one is cherry-red? Reproduced with permission from Valmori I. Nuove varietà in frutticoltura. Bologna: Edizioni Agricole, 1991.
DEPARTMENT OF ERROR International multicentre pooled analysis of late postnatal mother-to-child transmission of HIV-1 infection—In this article by Valériane Leroy and colleagues (Aug 22, p 597), the website address in the second paragraph of the introduction should have been http://www.unaids.org/unaids/document/epide mio/infant; in table 1, column 1, row 3 should have been Kigali, Rwanda;7 and in the acknowledgments Joanne Embell should have been Joanne Embree. Can HCV infection be cleared?—In the Commentary by Ola Weiland on Aug 29, p 669, reference 7, by Reichard O and colleagues is in press with Scand J Infect Dis. Expression of sequence variants of the endogenous retrovirus RGH in particle form in multiple sclerosis—In this research letter by T Christensen and colleagues (Sept 26, p 1033),
dRNA in the first sentence of the fourth paragraph should read tRNA. The sixth sentence of the second paragraph should read “We analysed PCR products by agarose gel electrophoresis and cloning, followed by dideoxy-sequencing”. The first sentence of the fifth paragraph should read “We also tested multiple sclerosis cell line particle RNAs, purified by our standard procedure with the reported ERV-9-related nested primer set ST1/2 and RT-PCR conditions.4” The first sentence of the eighth paragraph should start “ERV-9-type-C-related sequences”. MSVR in the second sentence of the eighth paragraph should read MSRV.
Etruscan wombs—In this research letter, by G Baggieri (Sept 5, p 790), the end of the first sentence on the second paragraph should read “. . . written by Soranus of Ephesus in the second century AD”.
THE LANCET • Vol 352 • October 3, 1998