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Ethical dilemmas in care for HIV infection among French general practitioners
ELSEVIER
Health Policy 31 (1995) 197-210
Ethical dilemmas in care for HIV infection among French general practitioners Jean-Paul Moatti*“, Marc Souvilleavb, Yolande Obadia”‘“, Michel Morinaa*b, RCmy Sebbahd, Thierry Gambye, HervC Gallais’, Jean-Albert GastautaTg ‘INSERM, Research Unit 379: Epidemiology and Social Science Applied to Medical Innovation, Institut Paoli-Calmettes. 232 Bid Sainte Marguerite, 13273 Marseille, Cedex 9, France bLaboratory of Social Psychology, University Aix-Marseille. Marseille. France ‘Regional Center for Disease Control (South-&stern France), Marseille, France ‘Regional Union for Continuing Medical Education (South-Eastern France), Marseille, France eDepartment of Dermatology, Saint-Joseph Hospital, Marseille, France ‘Department of Infectious Diseases, Hospital ‘La Conception’ Marseille, France BDepartment of Haematology, Institut Paoli-Calmettes. Marseille. France
Received 2 June 1994; revision received 13 September 1994; accepted 14 September 1994
Abstract A survey was carried out in May-June 1992,in the city of Marseille (South-Eastern France),to analyze attitudestowards ethical issuesassociatedwith the care of HIV-infected patientsin a random sampleof general practitioners (GPs) (telephoneinterviews; answer rate = 78.6%;n = 313).A total of 70.6%wereconsultedby HIV carriersand 48.9%regularly took careof thesepatientsover the pastyear. Multi-dimensionalanalysisshowedthat support for HIV mandatory screeningwasrelatedto lack of knowledgeand experiencewith HIV infection, high perceptionof risksassociatedwith HIV care,and the individual characteristics of GPs, suchasreligiousbeliefsand intoleranceto uncertainsituations.GPswith experience of regularcareof HIV carriershad the sameopinionsthan the restof the sampleabout ‘creation of specializedhospitalsfor AIDS patients’ and similar attitudes toward HIV testing ‘without patients’ consent’or breachingof confidentiality of HIV diagnosis.Debateson ethicalissues amongGPscannot be reducedto a simplisticdivision of a ‘liberal group’ highly involved in prevention and HIV care and a ‘conservative’majority more or lessinclined to stigmatizeHIV-infected patients.Ambiguousmessages on theseissuesfrom healthauthorities and professionalethical bodiesmay have very negativeimpactson the attitudes of primary care physiciansregardingthe acceptability of HIV-infected patients. * Corresponding author, Tel: +33 91 223356; Fax: +33 91 260852. 0168-8510/95/$09.50 SSDI0168-8510(94)00698-E
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Keywords: HIV infection; Ethics; General practitioners; KAB (knowledge, attitudes, beliefs); Discrimination; Medical secrecy
1. Introduction
With the development of the AIDS epidemic, it seems obvious that primary care physicians should play a growing role in primary prevention and screening of HIV infection as well as in regular care for already infected patients [l-3]. However, it has been widely established by surveys carried out in various countries, that willingness to treat individuals with HIV disease is often limited to only a small number of primary care physicians (GPs) and that there exist many structural and attitudebased barriers to ambulatory care of these patients [4-l 11. Among these barriers, the complex ethical issues related to physicians’ obligations to patients with a sexually transmissible disease [12-141 are specially difficult to deal with for primary care physicians. The study of the French context may be specially helpful to better understand these difficulties. Involvement of GPs in prevention and care of HIV-infected patients is a special concern in France which is the European country with the highest total cumulative number of AIDS cases since the beginning of the epidemic (28 947 as of December 31, 1993). On the one hand, French authorities have up to now clearly rejected coercive policies for controlling the epidemic, including rejection of the application to AIDS of pre-existing laws on venereal diseases with their harsh requirements [15]. On the other hand, there have been recurrent public debates since 1987 about the possible introduction of mandatory HIV screening in some circumstances (such as premarital and prenatal examinations, or before surgery) as well as legal controversies about the individual responsibilities of HIV carriers in some cases of contamination; a major political scandal, which has received growing media exposure since 1991, has been created by the contamination of French haemophiliacs by HIVinfected blood products in 1985. In this article we present the main results concerning ethical issues and public health policies from the first in-depth survey on a random sample of French GPs about their knowledge, attitudes and practices in connection with HIV infection. 2. Material
and methods
2. I. Sample
A random sample (one out of two and a half GPs) (n = 427) of GPs whose practice was located in the city of Marseille was selected from the exhaustive administrative directory of the Sickness Fund of French Social Security. This directory includes all types of general practices (individual and group practices; GPs working full-time in private practices on a fee-for-service basis or having part-time activities on a salarybasis). Marseille ranks third among all the French cities as regards the incidence of AIDS (152 cases per million in 1991 in the administrative district), a high proportion of the contamination being due to i.v. drug use (46.0% of all the recorded cases).
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Two letters, one from the President of the local branch of the French National Board of Physicians (‘Ordre des Medecins’, the official professional body in charge of deontological and ethical issues), and the other from the director of the Regional Center for Disease Control (‘Observatoire Regional de la Sante’; ORS), which was mandated to carry out the survey on behalf of the National Agency for AIDS Research (‘Agence Nationale de Recherches sur le Sida’), were sent to the GPs included in the sample in order to inform them, in very general terms, that they were going to be contacted for a survey on HIV infection and to encourage them to participate. A few days later, the GPs were contacted by telephone by trained interviewers from the ORS, and an appointment was made for a telephone interview. 2.2. Questionnaire The survey was based on a 144-item questionnaire, including 22 questions about opinions toward public health policies and ethical dilemmas in the fight against the AIDS epidemic, recorded on 5-point Likert scales. Differential attitudes toward HIV carriers according to patient characteristics or to circumstances were elicited by confronting respondents with vignettes (simulated clinical cases) and by randomly varying the content of the vignette across the sample [16]. A knowledge score was built by counting the number of correct answers to 8 items, selected on the basis of the previous experience of continuing medical education programmes in France. Items about risk perception were based on a previous survey conducted in Canada [ 171, and an aggregated score was also built. A French adapted version of the individual’s general intolerance of ambiguity [18,19], i.e., a personality scale which has already proved its usefulness for analyzing physicians’ attitudes and behaviours in different contexts, as well as a shortened ditem version of the ‘Prejudicial Evaluation Scale’, which has already been used for measuring stigmatization toward AIDS patients [16], were included in the questionnaire. Lastly, a score of support for mandatory screening of HIV infection was built by aggregating answers to 12 items concerning different groups and circumstances. Detailed informations on these scores and scales are given in Appendix 1. 2.3. Statistical analysis Univariate analyses were performed using sis of variance was used to analyse relations the number of HIV-infected patients in the analysis of variance was applied to adjust for score of support for mandatory screening.
the chi-square test and one-way analybetween quantitative variables, such as practice, and other variables. Multiple relationships between variables and the
3.Resdts 3.1. Rate of participation in the survey Among the 427 physicians initially selected at random, it turned out that 29 did not satisfy the criteria for participating in the survey (they had either given up their practices, moved away from Marseille, or were medical specialists). Among the 398 remaining GPs, 83 refused to take part in the survey: however 61
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of the latter agreed to undergo a short interview about their experience with HIVinfected patients. The main reasons given for refusing to participate were lack of time (42 cases), objections to the procedure used (the subjects wanted to be paid or disliked telephone interviews; 25 cases) and a lack of interest in/or relevant experience of HIV infection (16 cases). In addition, two GPs gave up in the course of the telephone interview. The sample population therefore eventually amounted to 3 13 GPs (response rate = 78.6%). The mean duration of the interview was 53 min. No significant differences were observed between the 313 respondents and the 83 non-respondents in terms of any of the variables which could be determined from the initial file (age, sex, mode of practice, declared or not as a practitioner of one of the ‘alternative’ branches of medicine). Nor did the respondents and the 61 non-respondents for whom data about their practice was obtained differ significantly in terms of the number of patients with HIV who had consulted them over the previous twelve months, the number of HIV-antibody tests prescribed during the previous month, and whether or not the practitioner had previously attended medical training courses or post-university courses on HIV infection. 3.2. Experience in care of HIV+
patients
The vast majority of the GPs questioned were accustomed to screening for HIV by regularly prescribing HIV tests. During the month prior to the survey, 87.5% (n = 274) had prescribed at least one HIV test, and the mean number of prescriptions of this kind in the whole sample was 5.78 (S.D. = 7.04, median = 4). During the 1Zmonth period prior to the survey, a majority of the respondents (70.6%) had been consulted by at least one patient with HIV infection. In this group of 221 GPs, the mean number of consultations with HIV-infected patients during the past year was 4.09 (S.D. = 4.26; median = 1.0). A total of 153 respondents (48.9%) had participated in the regular medical follow-up of HIV-infected patients during the previous year; the mean number of patients of this kind per practitioner was 3.06 (S.D. = 3.36; median = 2.0). The majority of these 153 GPs (74.5%) always carried out the follow-up in collaboration with medical specialists, and 71.7% had to deal with at least one HIV-infected patient under antiviral (AZT) treatment. However, only a minority of the GPs (n = 58; 18.5%) had participated that year in the regular follow-up of more than 2 HIV-infected patients and these GPs alone accounted for 79.8% of the total number of cases of HIV infection which were given ambulatory care by this sample of physicians. For the 8-item knowledge score, mean score of the sample was 3.67 (S.D. = 1.81) and only 31.9% of the respondents had a higher score than 4. However, the group of 221 GPs who were consulted by HIV-infected patients over the past 12 months had a higher score than the group of GPs who were not: 3.95 (S.D. = 1.85) versus 3.10 (S.D. = 1.57); F-ratio = 13.39; P < 0.001); among the former, the 153 who participated in the regular medical follow-up of these patients also had a higher score than the remaining 68 who did not: 4.13 (S.D. = 1.84) versus 3.43 (S.D. = 1.78); F-ratio = 7.00; P < 0.01). The 153 GPs who administered regular care to HIV-infected patients also express-
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ed a lower perception of risk of acquiring HIV infection through occupational exposure and of social risk associated with treating HIV-infected patients than the rest of the sample (score of risk perception = 2.88 (S.D. = 1.66) versus 3.67 (S.D. = 1.64); F-ratio = 17.79; P c 0.0001). They declared that they ‘feel rather or totally at ease’ when dealing with HIV-infected patients more frequently than the rest of the sample (39.9% versus 21.9%; P c 0.01). But they nevertheless did not score significantly higher than the others on the question as to whether they would feel ‘rather or totally at ease’ when dealing with drug abuse in their patients (35.3% versus 30.0%), and they declared that they could ‘understand GPs who prefer not to take care of drug-addicts’ in the same proportions as the rest of the sample (62.1% versus 65.4%). 3.3. Opinions about public health policies The opinions of GPs about various issues related to public health policies for HIV prevention and care expressed a rather liberal orientation and an opposition toward coercive attempts for controlling the epidemic. In fact 81.2% rather or strongly agreed with the development of sexual education at schools and 70.0% agreed with the statement that ‘gays are normal ordinary people’. A total of 72.5% rather or strongly opposed the creation of official registers of named HIV carriers for the purpose of epidemiologic surveillance and 63.6% opposed any policy that would ‘treat i.v. drug users like criminals’, this last opinion being in opposition to current French law which considers any use of forbidden drugs as ‘criminal’. A similar orientation can be found on other issues like legalization of abortion (introduced under French law in 1975) which was considered a ‘good thing’ by 74.1%. A majority of the same respondents were nonetheless ready to support restrictive policies for public health considerations: 87.5% strongly or rather approvTable l GPs opinions about HIV mandatory screening (n = 313) HIV mandatory screening for
Prostitutes Pregnant women i.v. drug users Premarital examinations Inmates in prisons Health care professionals Homosexuals Before hospital admission In the army Foreign visitors Travellers coming back from Africa People from French Antillas
% of respondents who I Strongly disagree
2 Slightly disagree
3 Do not know
4 Slightly agree
5 Strongly agree
11.2 8.3 16.3 8.6 14.1 16.6 23.6 20.4 24.3 37.1 26.2
4.5 4.5 5.1 6.1 1.0 Il.2 12.5 16.0 16.6 11.5 17.3
5.4 3.8 3.8 4.5 9.9 9.6 10.2 8.9 10.5 10.5 10.5
19.5 26.8 23.0 29.4 22.4 27.2 19.5 23.3 19.2 18.2 25.2
59.4 56.6 51.8 50.8 46.6 35.4 34.2 31.4 29.4 22.7 20.8
25.9
19.2
13.4
24.6
16.9
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ed of regulatory decisions to forbid smoking in public places; and 74.7% opposed any legalization of drugs even for hashish or marijuana. Interestingly enough, on all these issues the answers of the 153 GPs who conducted regular follow-ups of HIVinfected patients during the previous year did not differ from those of the rest of the sample. A majority of respondents (57.2%) agreed with the idea of the ‘creation of specialized hospitals and medical centers for AIDS patients’: among the 153 GPs who conducted regular follow-ups of HIV-infected patients, 56.9% agreed with this idea, and the proportion of GPs who agreed was similar in the rest of the sample (57.5%). A majority of respondents (58.5-65.4% among the 153 with experience of regular follow-up) also attributed the major responsibility of the HIV contamination of French haemophiliacs by blood products to the government and public administration of the time, against 25.9% who attributed it to the ‘physicians of the Blood Transfusion Centers’ and 15.6% to other causes.
Table 2 Factors related to score of support for HIV mandatory screening (min. = 0, max. = IO) (multiple analysis of variance) Characteristics of respondents
Mean
HIV carriers in practice during last twelve months No (n = 92) 6.65 Yes without AIDS cases (n = 106) 6. I4 Yes including AIDS cases (n = 115) 5.33 Experience of invasive procedure on HIV-infected patients No (n = 197) 6.42 Yes (n = 116) 5.27 Smoking habit Smoker (n = 92) 6.47 Never smoked (n = 132) 5.99 Stopped smoking (n = 89) 5.51 Religion Practicising Catholics (n = 109) 6.25 Non-practicising Catholics (n = 101) 6.33 Other religions (n = 50) 6.26 No religion (n = 53) 4.58 Knowledge score about HIV infection c4 (n = 145) 6.68 24 (n = 168) 5.40 Intolerance to ambiguity scale >4 (high)@ = 147) 6.50 54 (low)(n = 166) 5.54 HIV risk perception scorea 24 (high)(n = 146) 6.51 c4 (low&i = 167) 5.55
SD.
Significance ofF
F
2.16 2.91 2.16
4.16
0.019
2.56 2.84
6.78
0.01 I
2.75 2.69 2.83
5.2
0.007
2.63 2.51 2.61 3.03
7.38
0.001
2.35 2.89
II.3
0.001
2.55 2.80
6.88
0.010
2.42 2.90
3.59
0.061
*When the ‘intolerance to ambiguity’ scale is removed from the model, the risk perception score reaches the level of statistical significance.
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3.4. Attitudes toward HIV mandatory
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screening
Table 1 presents the opinions of GPs about mandatory screening for HIV in various circumstances. Inter-item correlations between the 12 answers were high (Pearson correlation coefficients significant at P < 0.01). Mean score of support for mandatory screening was 5.99 (S.D. = 2.72) and was significantly lower among the 221 GPs who had been consulted by HIV-infected patients over the past twelve months than among the 92 who had not (5.7 versus 6.6; F-ratio = 7.79, P < 0.01). It must be noted that among the former group, the score was even lower among those who were confronted with AIDS cases (n = 115) than among those who were consulted by HIV carriers but no AIDS cases (n = 106) (5.3 versus 6.1; Fratio = 4.42; P c 0.05). On the contrary, among the 221 GPs consulted by HIVinfected patients, the score was similar whether they participated in regular followup of these patients or not (5.75 versus 5.71). However, mandatory HIV screening associated with prenatal and premarital examinations is strongly supported with no differences according to experience with HIV care. No relation was found between global support for mandatory screening and number of HIV tests prescribed during the last month before survey. And, the 153 GPs with experience of regular care for HIV-infected patients over the past year did not differ from the rest of the sample on their agreement about the possibility of HIV testing ‘without patient’s consent’ in some circumstances like ‘before surgery’ (64.7% versus 64.4%), ‘following an occupational needlestick injury’ (77.8% versus 80.0%), ‘during prenatal care’ (49.5% versus 50.5%), and even ‘whenever the physician thinks it is necessary’ (77.5% versus 72.1%). Table 2 shows the main factors which were related to the score of support for mandatory screening after adjustment for all variables which were significantly associated with it in univariate analyses. It shows that GPs who had a higher experience and knowledge of caring for HIV-infected patients, who expressed a lower perception of risks associated with such care and a greater tolerance to ambiguity are less likely to support mandatory screening for HIV. It is also worth noting that GPs who declared they have ‘no religion’ and who personally experienced adoption of individual preventive behaviour (by having stopped smoking) are less supportive of mandatory screening. 3.5. Attitudes toward ethical issues in care for HIV-infected
patients
The sample was randomly divided into 4 groups to measure, using an abridged version of the Prejudicial Evaluation Scale, respective attitudes toward patients defined as ‘a cancer patient ‘, ‘a heavy smoker with cancer’, ‘an AIDS patient’, and ‘an i.v. drug user with AIDS’ (Table 3). The score of prejudice, which was calculated by aggregating answers to the 4 items for which statistical significant differences were found is significantly higher in the groups confronted with AIDS patients, especially when HIV infection is associated with drug use. The t-test comparison of mean scores is always statistically significant (P < 0.01) between each group. Table 4 presents attitudes of GPs toward the possibility of breaching medical confidentiality about patients’ HIV positive serostatus for the benefit of various third parties. Agreement is always significantly lower in the half of the sample where the
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Table 3 Prejudicial evaluation scale according to type of patients (item means) (minimum = 1, strongly disagree; maximum = 5, strongly agree) Patient
Type of case (vignette) i.v. drug user AIDS patient
AIDS patient (n = 76)
(n = 82)a
Deserves sympathy and understandingc Lots of pain and suITering Is responsible for his own disca& Is dangerous to othersC Is expensive for societyc Deserves best medical treatment Aggregated prejudicial evaluation scaleb
Heavy smoker cancer patient
Cancer patient (n = 72)
(n = 83)
4.11 (1.14)
4.45 (0.62)
4.46 (0.63)
4.04 (1.05)
4.26 (0.88)
3.99
2.98 (1.33)
2.58 (1.22)
3.07 (1.35)
1.49 (0.86)
3.63 (1.20) 3.49 (1.28) 4.68 (0.56)
3.29 (1.24) 3.32 (1.33) 4.87 (0.28)
1.69 (1.13) 3.14 (1.46) 4.83 (0.54)
1.21 (0.79) 2.89 (1.37) 4.85 (0.55)
10.74 (2.70)
9.45 (3.12)
7.04 (2.17)
11.99 (2.85)
(1.05)
4.54'(0.71) 3.96 (1.07)
*Standard deviation in parentheses. bsee Appendix 1: score aggregating the answers to the four items’.
question specified ‘without patient’s consent’ than in the other half where the question specified ‘with patient’s consent’. It is worth noting that only other health care personnel have a majority in favour of breaching confidentiality either with or without patient’s consent, while even in the group ‘with patient’s consent’ the maTable 4 Attitudes toward breaching of confidentiality of HIV positive diagnosis to third parties Third party concerned
Other GPs Nurses and other health professionals caring for the patient Sexual partners Patient’s family Minister of Health Social workers in charge of the patient Sickness Fund of Social Security Private insurance companies
% of respondents who agree to disclose a patients HIV+ diagnosis With patient’s consent (n = 155)a
Without patient’s consent (n = 158)a
92.9 92.9
82.3 75.9
73.5 43.9 36.1 32.9 29.0 20.0
23.4 7.6 17.7
10.1 13.3 6.3
sQuestions were asked of half of the sample with the formulation ‘with patients’ consent’ and to the other half with the opposite formulation ‘without patients’ consent’. Differences in answers for all items are statistically significant (at least P < 0.01) between the two groups.
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jority of GPs would refuse to transmit information to third parties other than medical professionals. However, confronted with the case of ‘an HIV-infected patient who has to go for benign surgery and who asks the GP not to inform the surgeon about his (or her) HIV serostatus’, 71.0% would refer the patient but would nonetheless inform their colleague of the patient’s HIV infection (either directly, 50.5%, or by advising him (or her) to perform an HIV test before surgery, 19.5%), 24.6% would refuse to refer him under such conditions, while only 2.6% would refer him without informing their colleague; the remaining 2.9% would ‘not know’ what to do. In contrast, the majority of respondents opposed any mandatory requirement for HIV-infected physicians to inform a third party of their serostatus, whether this third party is the Minister of Health (72.2% opposed the idea), the Regional Board of Physicians (63.6%), the colleagues with whom he has professional relations (65.8%), or the patients themselves (61.7%). The 153 GPs with experience of followup of HIV-infected patients during the previous year even expressed a significantly stronger opposition than the rest of the sample (79.7%, 70.6%, 78.4%, and 66.7%, respectively). But only approximately one third of the sample (27.2%) would totally oppose legal action against an HIV-infected physician who accidentally contaminated a patient while 30.7% would consider it ‘normal’ if the patient was not informed of the physician’s serostatus and 26.5% even if the patient was informed; the high proportion of respondents who ‘did not know’ (15.6%) illustrates how GPs can be uncertain on this issue of physicians’ responsibility. Respondents were asked what would be their attitudes if they were informed that the surgeon to whom they usually refered patients is HIV-infected; but the question was formulated for half of the sample (n = 158) about ‘patients’ (in general) and for the other half (n = 155) about ‘members of the GP’s own family’. While 53.8% will continue to refer to the surgeon in the group where patients were concerned, the proportion is only 33.5% in the group for which family members were at risk (P c 0.001). Confronted with an imaginary consultation of a couple one member of whom is HIV-positive and who asks for advise about the possibility of starting a pregnancy, 40.9% declared they would ‘try to dissuade them’, 58.1% would ‘inform them of the risks and let the couple make the decision’ and only three respondents declared they would ‘support’ them in their wish to have a child (answers were not different in the two halves of the sample according to the presentation of the case with either the man or the woman being the HIV carrier, and they were also not different between male and female GPs). 4. J3lseudon Our results confirm the relationships, which were already observed in surveys among primary care physicians of other industrialized countries, between GPs’ support for restrictive policies, such as mandatory screening, in the fight against the AIDS epidemic and factors such as lack of knowledge and clinical experience of HIV infection; exaggerated perception of risk or discriminatory attitudes [5,7,9,20,21].
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Although we can never be certain of the nature of the correlation between attitudes and behaviours, it is clear that GPs with less positive attitudes toward HIVinfected patients and more distrust toward the HIV preventive policies which are currently implemented in France and which are based on promotion of voluntary adoption of individual ‘safe’ behaviours rather than regulatory controls, express less desire to be clinically involved with these patients. However, our results call attention to other factors, of a more general kind, that seem to influence the degree to which physicians adher to coercive policies in the specific case of HIV infection. These include cultural factors (such as individual religious beliefs), personal experience with adoption of preventive behaviours (GPs who themselves stopped smoking seem more likely to trust other individuals’ adoption of ‘responsible’ behaviour for limiting HIV transmission), and physicians’ personal tolerance towards uncertainty, which has already been proved to be an important determinant of clinical practice [22], and which is related to the level of coercion that appears to GPs to be appropriate for controlling risks of HIV transmission. Our sample is only representative for GPs in the city of Marseille. Therefore, one should be cautious in drawing general conclusions for the whole French medical profession at national level. The incidence of AIDS in this city is, however, one of the highest in the country, with a high proportion of HIV infection related to i.v. drug use. In spite of this difficult situation, our survey shows that openly discriminatory attitudes towards HIV-infected patients are expressed by a very limited number of Marseille GPs. The attitudes of the French medical profession may in fact simply reflect the considerable consensus which exists in national public opinion that tolerance and solidarity should be shown towards AIDS victims: these standards have been actively promoted since the beginning of the epidemic by the French public authorities and the scientific, medical, religious and political leaders 115,231. The fact that French physicians are more strongly attached to traditional values of medical ethics than their North-American colleagues, which has been pointed out in other contexts [24], might also explain why discriminatory attitudes seem to have taken hold only among a limited fraction of French GPs confronted with the AIDS epidemic [25]. But our results nonetheless show that the widespread adhesion of French GPs to the Hippocratic precept that all who suffer must be taken care of does not mean that they can ignore the difficult ethical dilemmas associated with the AIDS epidemic. The French context is indeed appropriate to show that the debates on these issues inside the medical profession cannot be reduced to a simple mechanistic division between a ‘liberal group’ highly involved in prevention and care, and a ‘conservative’ majority more or less inclined to stigmatize HIV-infected patients. The fact that a majority of our respondents, whatever their experience with HIVinfected patients, supported the idea of ‘specialized hospitals and medical centers’ for AIDS patients may partly reflect an understanding of the current difficulties encountered by these patients in mainstream care rather than a desire to segregate them [26]. GP support for mandatory prenatal and premarital HIV testing, although the French authorities have so far rejected any proposals along these lines, may reflect the French experience, where mandatory prenatal care visits and examina-
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tions have been associated with successesin the reduction of perinatal mortality and equity of access to care, rather than the adoption of discriminatory attitudes [27]. Even support for physicians’ right to have an HIV test carried out ‘without the patient’s prior consent’ in some circumstances, expressed reluctance to take care of i.v. drug addicts, and apparently contradictory attitudes toward confidentiality of diagnosis when HIV-infected patients, their partners or physicians and their own families were at risk, should not be exclusively interpreted as expressions of stigmatization. Such attitudes may rather reflect the limits of traditional medical ethics existing before the AIDS epidemic [ 131, and the fact that individual GPs are not well equipped for dealing with the difficult choices “among various prima facie ethical duties” (281 that may be associated with clinical situations concerning HIVinfected patients. Our first conclusion is that, to be effective, continuing medical education programs aimed at motivating primary care physicians to become more involved in HIV care should not be limited to the transmission of technical knowledge, but should include explicit discussion of these ethical issues as well as acquisition of practical and psychological skills to deal with the clinical situations in which they may be raised. A second conclusion is that because these issues raise problems involving complex trade-offs which are not easily dealt with at the level of individual practice, health authorities, professional ethical bodies and elected officials must send clear messages on these matters to physicians. For instance, whereas corresponding American and Canadian bodies have seemed ready to accept breaching of confidentiality to protect a third party from the risk of HIV contamination in some circumstances [29,30], the French National Board of Physicians has always defended patients’ rights to strict secrecy as far as the diagnosis of HIV infection is concerned; and, the recent reform of French penal law (which started on March 1, 1994) strictly forbids any kind of violation of medical secrecy and fully protects physicians’ responsibility in case of legal action related to HIV contamination by a third party. But, a recent proposal of the Senate to introduce mandatory HIV screening for individuals with a diagnosis of tuberculosis and controversies about the HIV contamination of haemophiliacs are examples of different French attitudes revealed in ambiguous debates and statements from political and scientific circles. The effectiveness of restrictive measures for controlling the AIDS epidemic, such as contact tracing and partner notification, mandatory screening, breaching of HIV diagnosis confidentiality for individuals demonstrating ‘irresponsible’ behaviours toward others, or even quarantine of HIV-infected patients can be discussed on public health grounds and is indeed highly debatable [31]. But, our survey shows that even if some of these measures should prove to be partially effective, public health authorities, in discussing their introduction, should be very careful about their potential negative impact on the acceptance of HIV-infected patients by primary care physicians. Acknowledgements This research was supported by the EC Commission (Public Health Unit) and by the French National Agency for AIDS Research (ANRS).
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Appeudlx 1
Scores and scales used in the survey Knowledge score The score was obtained by counting the number of correct answers (CA), on the basis of published scientific information and official experts’ reports from the French National Agency for AIDS Research at time of the survey (June 1992), to the following eight questions: ‘When an HIV+ patient has persistent headaches, a CT scan should be prescribed with a normal neurological examination’ (CA = yes); ‘Risk of contamination following an HIV-infected needlestick injury is..’ (CA =; < 1%); ‘Children born from an HIV+ mother can become HIV- after a certain period of time’ (CA = yes); ‘Prophylactic treatment of pneumocystis curinii should be systematically started in HIV+ patients with CD4 counts under..’ (CA = 200/mm3); ‘Mother to fetus HIV transmission can be estimated in France at around....’ (CA = 20-30%); ‘HIV infection can be transmited through breast-feeding’ (CA = yes); ‘Apart from the initial phase of HIV infection, a positive P24 antigenemia is of...’ (CA = poor prognosis); and ‘All health care expenditures of an HIV+ patient are 100% covered by French Social Security’ (CA = no). Intolerance to ambiguity scale The score was obtained by aggregating answers on 5-point Likert scales (1, strongly disagree; 2, slightly disagree; 3, neither agree or disagree; 4, slightly agree; 5, strongly agree) to the following 8 statements which refer to attitudes about decision making or problem solving in general: ‘I feel better able to accomplish things by sticking to some basic rules’, ‘It really disturbs me when I am unable to follow another person’s train of thought’, ‘If I am uncertain about the responsibilities involved in a particular task, I get very anxious’, ‘ Before any important task, I must know how long it will take’, ‘The best part of working on a jigsaw puzzle is putting in that last piece’, ‘I do not like to work on a problem unless there is a possibility of getting a clear-cut and unambiguous answer’, ‘I am often uncomfortable with people unless I feel that I can understand their behavior’, and ‘A good task is one in which what is to be done and how it is to be done are always clear’. The score was obtained by the formula: RND (C answers3)lrl; minimum = 0, maximum = 8, and had a Cronbach alpha reliability of 0.78. The higher the score, the higher the respondent expressed intolerance to ambiguity and uncertainty. Mean score in the total sample was 4.36 (SD. = 1.48). Score of support for HIV mandatory screening The score was built by aggregating answers on 5-point Likert scales (from 1 = strongly disagree to 5 = strongly agree) to the 12 statements about HIV mandatory screening in Table 1. The score was obtained by the formula: RND (C answers-12)/5; minimum = 0, maximum = 10, and had a Cronbach alpha reliability of 0.93. Score of HIV risk perception The score was built by aggregating
answers on 5-point
Likert
scales (from
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1 = strongly disagree to 5 = strongly agree) to the 8 following statements about physical, emotional and social risks associated with care of HIV-infected patients: ‘Physicians are concerned about their own risk of HIV infection’, ‘Physicians are concerned about risk of transmiting HIV to their own family’, ‘Physicians are at greater risk than others of acquiring HIV infection’, ‘Fear of contagion interferes with a physician’s relationship with HIV-infected patients’, ‘Caring for HIV-infected patients is too emotionally draining to be satisfying’, ‘Physician’s stress is higher than when caring for other serious diseases ‘, ‘Physicians are concerned about a stigma from having many HIV-infected patients in the practice’, and ‘Physicians would lose patients from their practice if it were known they were taking care of many HIVinfected patients’. The score was obtained by the formula: RND (C answers-8)/4; minimum = 0, maximum = 8, and had a Cronbach alpha reliability of 0.84. The higher the score, the more the respondent expressed anxiety about risks associated with care for HIV-infected patients. Mean score in the total sample was 3.38 (S.D. = 1.69). Prejudicial evaluation scale A 6-item scale was initially presented to respondents (Table 3). An aggregated scale was built by using the 4 items of Table 3 where significant differences were found according to the type of patient. Coding was (1, strongly disagree; 2, slightly disagree; 3, neither agree or disagree; 4, slightly agree; 5, strongly agree) for the three items ‘Is responsible for his own disease’, ‘Is dangerous to others’, ‘Is expensive for society’ and a reverse coding (from ‘strongly agree = 1’ to ‘strongly disagree = 5’) for the item ‘deserves sympathy and understanding’. The higher the score, the stronger the respondent expressed prejudice toward the patient presented in the vignette. References Ill Working Party of the Royal College of General Practitioners, Human ImmunodeBciency Virus and
the Acquired Immune Deficiency Syndrome in general practice, Journal of the Royal College of General Practitioners, 38 (1988) 219-225. I21 Paauw, D.S. and O’Neill, J.F., Human InununodeBciency Virus and the primary care physician, Journal of Family Practice, 31 (1990) 646-650. [31 Smith, M.D., Primary care and HIV disease, Journal of General Internal Medicine, 6 (1991) S56-S62. 141 Gerber& B., Maguire, B.T., Bleecker, T., Coates, T.J. and McPhee, S.J., Primary care physicians and AIDS: attitudinal and structural barriers to care, Journal of the American Medical Assoctation, 266 (1991) 2837-2842. PI Boyton, R. and Scambler, G., Survey of general practitioners’ attitudes to AIDS in the North West Thames and East Anglian regions, British Medical Journal, 296 (1988) 538-540. I61 Taylor, K.M., Shapiro, M., Skinner, H.A., Eakin, J. and Kelner, M., Understanding physicians’ response to AIDS, Canadian Medical Association Journal, 140 (1989) 597-602. 171 Larsen, J.H., Lassen, L.C. and Miinster, K., HIV infection and AIDS in Danish general practice, Scandinavian Journal of Primary Health Care, 8 (1990) 75-79. Is1 Commonwealth AIDS Research Grant Committee Working Party, Attitudes, knowledge, and behaviour of general practitioners in relation to HIV infection and AIDS, Medical Journal of Australia, 153 (1990) 5-12. 191 Fazekas, C., Diamond, M., M&e, J.R. and Neubauer, A.C., AIDS and Austrian physicians, AIDS Education and Prevention, 4 (1992) 279-294.
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[IO] Storosum, J.G., Sno, H.N., Schalken, H.F.A. et al., Attitudes of health care workers towards AIDS at three Dutch hospitals, AIDS, 5 (1990) 55-60. [I 11 Obadia, Y. Viau, A., Gastaut, J.A., Sebbah, R., Mot-in, M. and Moatti, J.P., Determinants of care for HIV-infected persons among French GPs. Abstract (PGD21-4041) presented at the IXth International Conference on AIDS, Berlin, June 6-l 1, 1993. [12] Boyd, K.M., HIV infection and AIDS: the ethics of medical confidentiality, Journal of Medical Ethics, 18 (1992) 173-179. [13] Zuger. A. and Miles, S.H., Physicians, AIDS, and occupational risk (historic traditions and ethical obligations), Journal of the American Medical Association, 258 (1987) 1924-1928. [I41 Emanuel, E.J., Do physicians have an obligation to treat patients with AIDS?, New England Joyrnal of Medicine, 318 (1988) 1686-1690. [I51 Steffen, M., France: social solidarity and scientific expertise. In: D.L. Kirp and R. Bayer (Eds.), AIDS in the Industrialized Democracies. Passions, Politics and Policies, Rutgers University Press, New Brunswick, NJ, 1992, pp. 221-251. [16] Kelly, J.A., Lawrence, J.S., Smith, S., Hood, H.V. and Cook, D.J., Stigmatization of AIDS patients by physicians, American Journal of Public Health, 77 (1987) 789-791. 1171 Taylor, K.M., Eakin, J.M., Skinner, H.A., Kelner, K.M. and Shapiro, M., Physician’s perception of personal risk of HIV infection and AIDS through occupational exposure, Canadian Medical Association Journal, 143 (1990) 493-500. [I81 Budner, S., Intolerance of ambiguity as a personality variable, Journal of Personality, 30 (1962) 29-50. [19] Geller, G., Faden, R. and Levine, D.M., Tolerance to ambiguity among medical students: implication for their selection, training and practice, Social Science and Medicine, 31 (1990) 619-624. [20] Gerbert, B., Bleecker, T., Maguire, B.T. and Carpers, N., Physicians and AIDS: sexual risk assessment and willingness to treat HIV-infected patients, Journal of General Internal Medicine, 7 (I 992) 657-664. 1211 King, M.B., London general practitioners’ involvement with HIV infection, Journal of the Royal College of General Practitioners, 39 (1989) 280-283. [22] Gerrity, M.S., Earp, J.A., De Vellis, R.F. and Light, D.W., Uncertainty and professional work: perceptions of physicians in clinical practice, American Journal of Sociology, 97 (1992) 1022-1051. [23] Moatti, J.P., Dab, W., Loundou, H. et al., Impact on the general public of media campaigns against AIDS: a French evaluation, Health Policy, 21 (1992) 223-247. [24] Wertx, D.C., Fletcher, J.C. and Mulvihill, J.J., Medical geneticists confront ethical dilemmas: crosscultural comparisons among 18 nations, American Journal of Human Genetics, 56 (1990) 1200-1213. [25] Shapiro, M.F., Hayward, R.A., Guillemot, D. and Jayle, D., Residents’ experiences in, and attitudes toward the care of persons with AIDS in Canada, France and the United States, Journal of the American Medical Association, 268 (1992) 510-515. [26] Rothman, D.J. and Tynan, E.A., Advantages and disadvantages of special hospitals for patients with HIV infection: a report by the New York City Task Force on Single-Disease Hospitals, New England Journal of Medicine, 323 (1990) 764-768. [27] Moatti, J.P., L.e Gales, C., Seror, V., Papiemik, E. and Henrion, R., Social acceptability of HIV screening among pregnant women, AIDS Care, 2 (1990) 213-222. (281 Ross, W.C., The Right and the Good, Clarendon, Oxford, 1930. [29] Griener, G.G., CMA code of ethics: time for a change?, Canadian Medical Association Journal, 144 (1991) 855-857. [30] American Medical Association: Board of Trustees Report LLL, Progress in the Prevention and Control of AIDS, American Medical Association Report, Chicago, 1991. [31] WHO Global Programme on AIDS, Effective Approaches to AIDS Prevention. WHO/IDS/GPA Report 93.1, Geneva, 1993.
Health Policy 31 (1995) 197-210
Ethical dilemmas in care for HIV infection among French general practitioners Jean-Paul Moatti*“, Marc Souvilleavb, Yolande Obadia”‘“, Michel Morinaa*b, RCmy Sebbahd, Thierry Gambye, HervC Gallais’, Jean-Albert GastautaTg ‘INSERM, Research Unit 379: Epidemiology and Social Science Applied to Medical Innovation, Institut Paoli-Calmettes. 232 Bid Sainte Marguerite, 13273 Marseille, Cedex 9, France bLaboratory of Social Psychology, University Aix-Marseille. Marseille. France ‘Regional Center for Disease Control (South-&stern France), Marseille, France ‘Regional Union for Continuing Medical Education (South-Eastern France), Marseille, France eDepartment of Dermatology, Saint-Joseph Hospital, Marseille, France ‘Department of Infectious Diseases, Hospital ‘La Conception’ Marseille, France BDepartment of Haematology, Institut Paoli-Calmettes. Marseille. France
Received 2 June 1994; revision received 13 September 1994; accepted 14 September 1994
Abstract A survey was carried out in May-June 1992,in the city of Marseille (South-Eastern France),to analyze attitudestowards ethical issuesassociatedwith the care of HIV-infected patientsin a random sampleof general practitioners (GPs) (telephoneinterviews; answer rate = 78.6%;n = 313).A total of 70.6%wereconsultedby HIV carriersand 48.9%regularly took careof thesepatientsover the pastyear. Multi-dimensionalanalysisshowedthat support for HIV mandatory screeningwasrelatedto lack of knowledgeand experiencewith HIV infection, high perceptionof risksassociatedwith HIV care,and the individual characteristics of GPs, suchasreligiousbeliefsand intoleranceto uncertainsituations.GPswith experience of regularcareof HIV carriershad the sameopinionsthan the restof the sampleabout ‘creation of specializedhospitalsfor AIDS patients’ and similar attitudes toward HIV testing ‘without patients’ consent’or breachingof confidentiality of HIV diagnosis.Debateson ethicalissues amongGPscannot be reducedto a simplisticdivision of a ‘liberal group’ highly involved in prevention and HIV care and a ‘conservative’majority more or lessinclined to stigmatizeHIV-infected patients.Ambiguousmessages on theseissuesfrom healthauthorities and professionalethical bodiesmay have very negativeimpactson the attitudes of primary care physiciansregardingthe acceptability of HIV-infected patients. * Corresponding author, Tel: +33 91 223356; Fax: +33 91 260852. 0168-8510/95/$09.50 SSDI0168-8510(94)00698-E
0 1995 Ekvier
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Keywords: HIV infection; Ethics; General practitioners; KAB (knowledge, attitudes, beliefs); Discrimination; Medical secrecy
1. Introduction
With the development of the AIDS epidemic, it seems obvious that primary care physicians should play a growing role in primary prevention and screening of HIV infection as well as in regular care for already infected patients [l-3]. However, it has been widely established by surveys carried out in various countries, that willingness to treat individuals with HIV disease is often limited to only a small number of primary care physicians (GPs) and that there exist many structural and attitudebased barriers to ambulatory care of these patients [4-l 11. Among these barriers, the complex ethical issues related to physicians’ obligations to patients with a sexually transmissible disease [12-141 are specially difficult to deal with for primary care physicians. The study of the French context may be specially helpful to better understand these difficulties. Involvement of GPs in prevention and care of HIV-infected patients is a special concern in France which is the European country with the highest total cumulative number of AIDS cases since the beginning of the epidemic (28 947 as of December 31, 1993). On the one hand, French authorities have up to now clearly rejected coercive policies for controlling the epidemic, including rejection of the application to AIDS of pre-existing laws on venereal diseases with their harsh requirements [15]. On the other hand, there have been recurrent public debates since 1987 about the possible introduction of mandatory HIV screening in some circumstances (such as premarital and prenatal examinations, or before surgery) as well as legal controversies about the individual responsibilities of HIV carriers in some cases of contamination; a major political scandal, which has received growing media exposure since 1991, has been created by the contamination of French haemophiliacs by HIVinfected blood products in 1985. In this article we present the main results concerning ethical issues and public health policies from the first in-depth survey on a random sample of French GPs about their knowledge, attitudes and practices in connection with HIV infection. 2. Material
and methods
2. I. Sample
A random sample (one out of two and a half GPs) (n = 427) of GPs whose practice was located in the city of Marseille was selected from the exhaustive administrative directory of the Sickness Fund of French Social Security. This directory includes all types of general practices (individual and group practices; GPs working full-time in private practices on a fee-for-service basis or having part-time activities on a salarybasis). Marseille ranks third among all the French cities as regards the incidence of AIDS (152 cases per million in 1991 in the administrative district), a high proportion of the contamination being due to i.v. drug use (46.0% of all the recorded cases).
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Two letters, one from the President of the local branch of the French National Board of Physicians (‘Ordre des Medecins’, the official professional body in charge of deontological and ethical issues), and the other from the director of the Regional Center for Disease Control (‘Observatoire Regional de la Sante’; ORS), which was mandated to carry out the survey on behalf of the National Agency for AIDS Research (‘Agence Nationale de Recherches sur le Sida’), were sent to the GPs included in the sample in order to inform them, in very general terms, that they were going to be contacted for a survey on HIV infection and to encourage them to participate. A few days later, the GPs were contacted by telephone by trained interviewers from the ORS, and an appointment was made for a telephone interview. 2.2. Questionnaire The survey was based on a 144-item questionnaire, including 22 questions about opinions toward public health policies and ethical dilemmas in the fight against the AIDS epidemic, recorded on 5-point Likert scales. Differential attitudes toward HIV carriers according to patient characteristics or to circumstances were elicited by confronting respondents with vignettes (simulated clinical cases) and by randomly varying the content of the vignette across the sample [16]. A knowledge score was built by counting the number of correct answers to 8 items, selected on the basis of the previous experience of continuing medical education programmes in France. Items about risk perception were based on a previous survey conducted in Canada [ 171, and an aggregated score was also built. A French adapted version of the individual’s general intolerance of ambiguity [18,19], i.e., a personality scale which has already proved its usefulness for analyzing physicians’ attitudes and behaviours in different contexts, as well as a shortened ditem version of the ‘Prejudicial Evaluation Scale’, which has already been used for measuring stigmatization toward AIDS patients [16], were included in the questionnaire. Lastly, a score of support for mandatory screening of HIV infection was built by aggregating answers to 12 items concerning different groups and circumstances. Detailed informations on these scores and scales are given in Appendix 1. 2.3. Statistical analysis Univariate analyses were performed using sis of variance was used to analyse relations the number of HIV-infected patients in the analysis of variance was applied to adjust for score of support for mandatory screening.
the chi-square test and one-way analybetween quantitative variables, such as practice, and other variables. Multiple relationships between variables and the
3.Resdts 3.1. Rate of participation in the survey Among the 427 physicians initially selected at random, it turned out that 29 did not satisfy the criteria for participating in the survey (they had either given up their practices, moved away from Marseille, or were medical specialists). Among the 398 remaining GPs, 83 refused to take part in the survey: however 61
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of the latter agreed to undergo a short interview about their experience with HIVinfected patients. The main reasons given for refusing to participate were lack of time (42 cases), objections to the procedure used (the subjects wanted to be paid or disliked telephone interviews; 25 cases) and a lack of interest in/or relevant experience of HIV infection (16 cases). In addition, two GPs gave up in the course of the telephone interview. The sample population therefore eventually amounted to 3 13 GPs (response rate = 78.6%). The mean duration of the interview was 53 min. No significant differences were observed between the 313 respondents and the 83 non-respondents in terms of any of the variables which could be determined from the initial file (age, sex, mode of practice, declared or not as a practitioner of one of the ‘alternative’ branches of medicine). Nor did the respondents and the 61 non-respondents for whom data about their practice was obtained differ significantly in terms of the number of patients with HIV who had consulted them over the previous twelve months, the number of HIV-antibody tests prescribed during the previous month, and whether or not the practitioner had previously attended medical training courses or post-university courses on HIV infection. 3.2. Experience in care of HIV+
patients
The vast majority of the GPs questioned were accustomed to screening for HIV by regularly prescribing HIV tests. During the month prior to the survey, 87.5% (n = 274) had prescribed at least one HIV test, and the mean number of prescriptions of this kind in the whole sample was 5.78 (S.D. = 7.04, median = 4). During the 1Zmonth period prior to the survey, a majority of the respondents (70.6%) had been consulted by at least one patient with HIV infection. In this group of 221 GPs, the mean number of consultations with HIV-infected patients during the past year was 4.09 (S.D. = 4.26; median = 1.0). A total of 153 respondents (48.9%) had participated in the regular medical follow-up of HIV-infected patients during the previous year; the mean number of patients of this kind per practitioner was 3.06 (S.D. = 3.36; median = 2.0). The majority of these 153 GPs (74.5%) always carried out the follow-up in collaboration with medical specialists, and 71.7% had to deal with at least one HIV-infected patient under antiviral (AZT) treatment. However, only a minority of the GPs (n = 58; 18.5%) had participated that year in the regular follow-up of more than 2 HIV-infected patients and these GPs alone accounted for 79.8% of the total number of cases of HIV infection which were given ambulatory care by this sample of physicians. For the 8-item knowledge score, mean score of the sample was 3.67 (S.D. = 1.81) and only 31.9% of the respondents had a higher score than 4. However, the group of 221 GPs who were consulted by HIV-infected patients over the past 12 months had a higher score than the group of GPs who were not: 3.95 (S.D. = 1.85) versus 3.10 (S.D. = 1.57); F-ratio = 13.39; P < 0.001); among the former, the 153 who participated in the regular medical follow-up of these patients also had a higher score than the remaining 68 who did not: 4.13 (S.D. = 1.84) versus 3.43 (S.D. = 1.78); F-ratio = 7.00; P < 0.01). The 153 GPs who administered regular care to HIV-infected patients also express-
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ed a lower perception of risk of acquiring HIV infection through occupational exposure and of social risk associated with treating HIV-infected patients than the rest of the sample (score of risk perception = 2.88 (S.D. = 1.66) versus 3.67 (S.D. = 1.64); F-ratio = 17.79; P c 0.0001). They declared that they ‘feel rather or totally at ease’ when dealing with HIV-infected patients more frequently than the rest of the sample (39.9% versus 21.9%; P c 0.01). But they nevertheless did not score significantly higher than the others on the question as to whether they would feel ‘rather or totally at ease’ when dealing with drug abuse in their patients (35.3% versus 30.0%), and they declared that they could ‘understand GPs who prefer not to take care of drug-addicts’ in the same proportions as the rest of the sample (62.1% versus 65.4%). 3.3. Opinions about public health policies The opinions of GPs about various issues related to public health policies for HIV prevention and care expressed a rather liberal orientation and an opposition toward coercive attempts for controlling the epidemic. In fact 81.2% rather or strongly agreed with the development of sexual education at schools and 70.0% agreed with the statement that ‘gays are normal ordinary people’. A total of 72.5% rather or strongly opposed the creation of official registers of named HIV carriers for the purpose of epidemiologic surveillance and 63.6% opposed any policy that would ‘treat i.v. drug users like criminals’, this last opinion being in opposition to current French law which considers any use of forbidden drugs as ‘criminal’. A similar orientation can be found on other issues like legalization of abortion (introduced under French law in 1975) which was considered a ‘good thing’ by 74.1%. A majority of the same respondents were nonetheless ready to support restrictive policies for public health considerations: 87.5% strongly or rather approvTable l GPs opinions about HIV mandatory screening (n = 313) HIV mandatory screening for
Prostitutes Pregnant women i.v. drug users Premarital examinations Inmates in prisons Health care professionals Homosexuals Before hospital admission In the army Foreign visitors Travellers coming back from Africa People from French Antillas
% of respondents who I Strongly disagree
2 Slightly disagree
3 Do not know
4 Slightly agree
5 Strongly agree
11.2 8.3 16.3 8.6 14.1 16.6 23.6 20.4 24.3 37.1 26.2
4.5 4.5 5.1 6.1 1.0 Il.2 12.5 16.0 16.6 11.5 17.3
5.4 3.8 3.8 4.5 9.9 9.6 10.2 8.9 10.5 10.5 10.5
19.5 26.8 23.0 29.4 22.4 27.2 19.5 23.3 19.2 18.2 25.2
59.4 56.6 51.8 50.8 46.6 35.4 34.2 31.4 29.4 22.7 20.8
25.9
19.2
13.4
24.6
16.9
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ed of regulatory decisions to forbid smoking in public places; and 74.7% opposed any legalization of drugs even for hashish or marijuana. Interestingly enough, on all these issues the answers of the 153 GPs who conducted regular follow-ups of HIVinfected patients during the previous year did not differ from those of the rest of the sample. A majority of respondents (57.2%) agreed with the idea of the ‘creation of specialized hospitals and medical centers for AIDS patients’: among the 153 GPs who conducted regular follow-ups of HIV-infected patients, 56.9% agreed with this idea, and the proportion of GPs who agreed was similar in the rest of the sample (57.5%). A majority of respondents (58.5-65.4% among the 153 with experience of regular follow-up) also attributed the major responsibility of the HIV contamination of French haemophiliacs by blood products to the government and public administration of the time, against 25.9% who attributed it to the ‘physicians of the Blood Transfusion Centers’ and 15.6% to other causes.
Table 2 Factors related to score of support for HIV mandatory screening (min. = 0, max. = IO) (multiple analysis of variance) Characteristics of respondents
Mean
HIV carriers in practice during last twelve months No (n = 92) 6.65 Yes without AIDS cases (n = 106) 6. I4 Yes including AIDS cases (n = 115) 5.33 Experience of invasive procedure on HIV-infected patients No (n = 197) 6.42 Yes (n = 116) 5.27 Smoking habit Smoker (n = 92) 6.47 Never smoked (n = 132) 5.99 Stopped smoking (n = 89) 5.51 Religion Practicising Catholics (n = 109) 6.25 Non-practicising Catholics (n = 101) 6.33 Other religions (n = 50) 6.26 No religion (n = 53) 4.58 Knowledge score about HIV infection c4 (n = 145) 6.68 24 (n = 168) 5.40 Intolerance to ambiguity scale >4 (high)@ = 147) 6.50 54 (low)(n = 166) 5.54 HIV risk perception scorea 24 (high)(n = 146) 6.51 c4 (low&i = 167) 5.55
SD.
Significance ofF
F
2.16 2.91 2.16
4.16
0.019
2.56 2.84
6.78
0.01 I
2.75 2.69 2.83
5.2
0.007
2.63 2.51 2.61 3.03
7.38
0.001
2.35 2.89
II.3
0.001
2.55 2.80
6.88
0.010
2.42 2.90
3.59
0.061
*When the ‘intolerance to ambiguity’ scale is removed from the model, the risk perception score reaches the level of statistical significance.
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screening
Table 1 presents the opinions of GPs about mandatory screening for HIV in various circumstances. Inter-item correlations between the 12 answers were high (Pearson correlation coefficients significant at P < 0.01). Mean score of support for mandatory screening was 5.99 (S.D. = 2.72) and was significantly lower among the 221 GPs who had been consulted by HIV-infected patients over the past twelve months than among the 92 who had not (5.7 versus 6.6; F-ratio = 7.79, P < 0.01). It must be noted that among the former group, the score was even lower among those who were confronted with AIDS cases (n = 115) than among those who were consulted by HIV carriers but no AIDS cases (n = 106) (5.3 versus 6.1; Fratio = 4.42; P c 0.05). On the contrary, among the 221 GPs consulted by HIVinfected patients, the score was similar whether they participated in regular followup of these patients or not (5.75 versus 5.71). However, mandatory HIV screening associated with prenatal and premarital examinations is strongly supported with no differences according to experience with HIV care. No relation was found between global support for mandatory screening and number of HIV tests prescribed during the last month before survey. And, the 153 GPs with experience of regular care for HIV-infected patients over the past year did not differ from the rest of the sample on their agreement about the possibility of HIV testing ‘without patient’s consent’ in some circumstances like ‘before surgery’ (64.7% versus 64.4%), ‘following an occupational needlestick injury’ (77.8% versus 80.0%), ‘during prenatal care’ (49.5% versus 50.5%), and even ‘whenever the physician thinks it is necessary’ (77.5% versus 72.1%). Table 2 shows the main factors which were related to the score of support for mandatory screening after adjustment for all variables which were significantly associated with it in univariate analyses. It shows that GPs who had a higher experience and knowledge of caring for HIV-infected patients, who expressed a lower perception of risks associated with such care and a greater tolerance to ambiguity are less likely to support mandatory screening for HIV. It is also worth noting that GPs who declared they have ‘no religion’ and who personally experienced adoption of individual preventive behaviour (by having stopped smoking) are less supportive of mandatory screening. 3.5. Attitudes toward ethical issues in care for HIV-infected
patients
The sample was randomly divided into 4 groups to measure, using an abridged version of the Prejudicial Evaluation Scale, respective attitudes toward patients defined as ‘a cancer patient ‘, ‘a heavy smoker with cancer’, ‘an AIDS patient’, and ‘an i.v. drug user with AIDS’ (Table 3). The score of prejudice, which was calculated by aggregating answers to the 4 items for which statistical significant differences were found is significantly higher in the groups confronted with AIDS patients, especially when HIV infection is associated with drug use. The t-test comparison of mean scores is always statistically significant (P < 0.01) between each group. Table 4 presents attitudes of GPs toward the possibility of breaching medical confidentiality about patients’ HIV positive serostatus for the benefit of various third parties. Agreement is always significantly lower in the half of the sample where the
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Table 3 Prejudicial evaluation scale according to type of patients (item means) (minimum = 1, strongly disagree; maximum = 5, strongly agree) Patient
Type of case (vignette) i.v. drug user AIDS patient
AIDS patient (n = 76)
(n = 82)a
Deserves sympathy and understandingc Lots of pain and suITering Is responsible for his own disca& Is dangerous to othersC Is expensive for societyc Deserves best medical treatment Aggregated prejudicial evaluation scaleb
Heavy smoker cancer patient
Cancer patient (n = 72)
(n = 83)
4.11 (1.14)
4.45 (0.62)
4.46 (0.63)
4.04 (1.05)
4.26 (0.88)
3.99
2.98 (1.33)
2.58 (1.22)
3.07 (1.35)
1.49 (0.86)
3.63 (1.20) 3.49 (1.28) 4.68 (0.56)
3.29 (1.24) 3.32 (1.33) 4.87 (0.28)
1.69 (1.13) 3.14 (1.46) 4.83 (0.54)
1.21 (0.79) 2.89 (1.37) 4.85 (0.55)
10.74 (2.70)
9.45 (3.12)
7.04 (2.17)
11.99 (2.85)
(1.05)
4.54'(0.71) 3.96 (1.07)
*Standard deviation in parentheses. bsee Appendix 1: score aggregating the answers to the four items’.
question specified ‘without patient’s consent’ than in the other half where the question specified ‘with patient’s consent’. It is worth noting that only other health care personnel have a majority in favour of breaching confidentiality either with or without patient’s consent, while even in the group ‘with patient’s consent’ the maTable 4 Attitudes toward breaching of confidentiality of HIV positive diagnosis to third parties Third party concerned
Other GPs Nurses and other health professionals caring for the patient Sexual partners Patient’s family Minister of Health Social workers in charge of the patient Sickness Fund of Social Security Private insurance companies
% of respondents who agree to disclose a patients HIV+ diagnosis With patient’s consent (n = 155)a
Without patient’s consent (n = 158)a
92.9 92.9
82.3 75.9
73.5 43.9 36.1 32.9 29.0 20.0
23.4 7.6 17.7
10.1 13.3 6.3
sQuestions were asked of half of the sample with the formulation ‘with patients’ consent’ and to the other half with the opposite formulation ‘without patients’ consent’. Differences in answers for all items are statistically significant (at least P < 0.01) between the two groups.
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jority of GPs would refuse to transmit information to third parties other than medical professionals. However, confronted with the case of ‘an HIV-infected patient who has to go for benign surgery and who asks the GP not to inform the surgeon about his (or her) HIV serostatus’, 71.0% would refer the patient but would nonetheless inform their colleague of the patient’s HIV infection (either directly, 50.5%, or by advising him (or her) to perform an HIV test before surgery, 19.5%), 24.6% would refuse to refer him under such conditions, while only 2.6% would refer him without informing their colleague; the remaining 2.9% would ‘not know’ what to do. In contrast, the majority of respondents opposed any mandatory requirement for HIV-infected physicians to inform a third party of their serostatus, whether this third party is the Minister of Health (72.2% opposed the idea), the Regional Board of Physicians (63.6%), the colleagues with whom he has professional relations (65.8%), or the patients themselves (61.7%). The 153 GPs with experience of followup of HIV-infected patients during the previous year even expressed a significantly stronger opposition than the rest of the sample (79.7%, 70.6%, 78.4%, and 66.7%, respectively). But only approximately one third of the sample (27.2%) would totally oppose legal action against an HIV-infected physician who accidentally contaminated a patient while 30.7% would consider it ‘normal’ if the patient was not informed of the physician’s serostatus and 26.5% even if the patient was informed; the high proportion of respondents who ‘did not know’ (15.6%) illustrates how GPs can be uncertain on this issue of physicians’ responsibility. Respondents were asked what would be their attitudes if they were informed that the surgeon to whom they usually refered patients is HIV-infected; but the question was formulated for half of the sample (n = 158) about ‘patients’ (in general) and for the other half (n = 155) about ‘members of the GP’s own family’. While 53.8% will continue to refer to the surgeon in the group where patients were concerned, the proportion is only 33.5% in the group for which family members were at risk (P c 0.001). Confronted with an imaginary consultation of a couple one member of whom is HIV-positive and who asks for advise about the possibility of starting a pregnancy, 40.9% declared they would ‘try to dissuade them’, 58.1% would ‘inform them of the risks and let the couple make the decision’ and only three respondents declared they would ‘support’ them in their wish to have a child (answers were not different in the two halves of the sample according to the presentation of the case with either the man or the woman being the HIV carrier, and they were also not different between male and female GPs). 4. J3lseudon Our results confirm the relationships, which were already observed in surveys among primary care physicians of other industrialized countries, between GPs’ support for restrictive policies, such as mandatory screening, in the fight against the AIDS epidemic and factors such as lack of knowledge and clinical experience of HIV infection; exaggerated perception of risk or discriminatory attitudes [5,7,9,20,21].
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Although we can never be certain of the nature of the correlation between attitudes and behaviours, it is clear that GPs with less positive attitudes toward HIVinfected patients and more distrust toward the HIV preventive policies which are currently implemented in France and which are based on promotion of voluntary adoption of individual ‘safe’ behaviours rather than regulatory controls, express less desire to be clinically involved with these patients. However, our results call attention to other factors, of a more general kind, that seem to influence the degree to which physicians adher to coercive policies in the specific case of HIV infection. These include cultural factors (such as individual religious beliefs), personal experience with adoption of preventive behaviours (GPs who themselves stopped smoking seem more likely to trust other individuals’ adoption of ‘responsible’ behaviour for limiting HIV transmission), and physicians’ personal tolerance towards uncertainty, which has already been proved to be an important determinant of clinical practice [22], and which is related to the level of coercion that appears to GPs to be appropriate for controlling risks of HIV transmission. Our sample is only representative for GPs in the city of Marseille. Therefore, one should be cautious in drawing general conclusions for the whole French medical profession at national level. The incidence of AIDS in this city is, however, one of the highest in the country, with a high proportion of HIV infection related to i.v. drug use. In spite of this difficult situation, our survey shows that openly discriminatory attitudes towards HIV-infected patients are expressed by a very limited number of Marseille GPs. The attitudes of the French medical profession may in fact simply reflect the considerable consensus which exists in national public opinion that tolerance and solidarity should be shown towards AIDS victims: these standards have been actively promoted since the beginning of the epidemic by the French public authorities and the scientific, medical, religious and political leaders 115,231. The fact that French physicians are more strongly attached to traditional values of medical ethics than their North-American colleagues, which has been pointed out in other contexts [24], might also explain why discriminatory attitudes seem to have taken hold only among a limited fraction of French GPs confronted with the AIDS epidemic [25]. But our results nonetheless show that the widespread adhesion of French GPs to the Hippocratic precept that all who suffer must be taken care of does not mean that they can ignore the difficult ethical dilemmas associated with the AIDS epidemic. The French context is indeed appropriate to show that the debates on these issues inside the medical profession cannot be reduced to a simple mechanistic division between a ‘liberal group’ highly involved in prevention and care, and a ‘conservative’ majority more or less inclined to stigmatize HIV-infected patients. The fact that a majority of our respondents, whatever their experience with HIVinfected patients, supported the idea of ‘specialized hospitals and medical centers’ for AIDS patients may partly reflect an understanding of the current difficulties encountered by these patients in mainstream care rather than a desire to segregate them [26]. GP support for mandatory prenatal and premarital HIV testing, although the French authorities have so far rejected any proposals along these lines, may reflect the French experience, where mandatory prenatal care visits and examina-
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tions have been associated with successesin the reduction of perinatal mortality and equity of access to care, rather than the adoption of discriminatory attitudes [27]. Even support for physicians’ right to have an HIV test carried out ‘without the patient’s prior consent’ in some circumstances, expressed reluctance to take care of i.v. drug addicts, and apparently contradictory attitudes toward confidentiality of diagnosis when HIV-infected patients, their partners or physicians and their own families were at risk, should not be exclusively interpreted as expressions of stigmatization. Such attitudes may rather reflect the limits of traditional medical ethics existing before the AIDS epidemic [ 131, and the fact that individual GPs are not well equipped for dealing with the difficult choices “among various prima facie ethical duties” (281 that may be associated with clinical situations concerning HIVinfected patients. Our first conclusion is that, to be effective, continuing medical education programs aimed at motivating primary care physicians to become more involved in HIV care should not be limited to the transmission of technical knowledge, but should include explicit discussion of these ethical issues as well as acquisition of practical and psychological skills to deal with the clinical situations in which they may be raised. A second conclusion is that because these issues raise problems involving complex trade-offs which are not easily dealt with at the level of individual practice, health authorities, professional ethical bodies and elected officials must send clear messages on these matters to physicians. For instance, whereas corresponding American and Canadian bodies have seemed ready to accept breaching of confidentiality to protect a third party from the risk of HIV contamination in some circumstances [29,30], the French National Board of Physicians has always defended patients’ rights to strict secrecy as far as the diagnosis of HIV infection is concerned; and, the recent reform of French penal law (which started on March 1, 1994) strictly forbids any kind of violation of medical secrecy and fully protects physicians’ responsibility in case of legal action related to HIV contamination by a third party. But, a recent proposal of the Senate to introduce mandatory HIV screening for individuals with a diagnosis of tuberculosis and controversies about the HIV contamination of haemophiliacs are examples of different French attitudes revealed in ambiguous debates and statements from political and scientific circles. The effectiveness of restrictive measures for controlling the AIDS epidemic, such as contact tracing and partner notification, mandatory screening, breaching of HIV diagnosis confidentiality for individuals demonstrating ‘irresponsible’ behaviours toward others, or even quarantine of HIV-infected patients can be discussed on public health grounds and is indeed highly debatable [31]. But, our survey shows that even if some of these measures should prove to be partially effective, public health authorities, in discussing their introduction, should be very careful about their potential negative impact on the acceptance of HIV-infected patients by primary care physicians. Acknowledgements This research was supported by the EC Commission (Public Health Unit) and by the French National Agency for AIDS Research (ANRS).
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Appeudlx 1
Scores and scales used in the survey Knowledge score The score was obtained by counting the number of correct answers (CA), on the basis of published scientific information and official experts’ reports from the French National Agency for AIDS Research at time of the survey (June 1992), to the following eight questions: ‘When an HIV+ patient has persistent headaches, a CT scan should be prescribed with a normal neurological examination’ (CA = yes); ‘Risk of contamination following an HIV-infected needlestick injury is..’ (CA =; < 1%); ‘Children born from an HIV+ mother can become HIV- after a certain period of time’ (CA = yes); ‘Prophylactic treatment of pneumocystis curinii should be systematically started in HIV+ patients with CD4 counts under..’ (CA = 200/mm3); ‘Mother to fetus HIV transmission can be estimated in France at around....’ (CA = 20-30%); ‘HIV infection can be transmited through breast-feeding’ (CA = yes); ‘Apart from the initial phase of HIV infection, a positive P24 antigenemia is of...’ (CA = poor prognosis); and ‘All health care expenditures of an HIV+ patient are 100% covered by French Social Security’ (CA = no). Intolerance to ambiguity scale The score was obtained by aggregating answers on 5-point Likert scales (1, strongly disagree; 2, slightly disagree; 3, neither agree or disagree; 4, slightly agree; 5, strongly agree) to the following 8 statements which refer to attitudes about decision making or problem solving in general: ‘I feel better able to accomplish things by sticking to some basic rules’, ‘It really disturbs me when I am unable to follow another person’s train of thought’, ‘If I am uncertain about the responsibilities involved in a particular task, I get very anxious’, ‘ Before any important task, I must know how long it will take’, ‘The best part of working on a jigsaw puzzle is putting in that last piece’, ‘I do not like to work on a problem unless there is a possibility of getting a clear-cut and unambiguous answer’, ‘I am often uncomfortable with people unless I feel that I can understand their behavior’, and ‘A good task is one in which what is to be done and how it is to be done are always clear’. The score was obtained by the formula: RND (C answers3)lrl; minimum = 0, maximum = 8, and had a Cronbach alpha reliability of 0.78. The higher the score, the higher the respondent expressed intolerance to ambiguity and uncertainty. Mean score in the total sample was 4.36 (SD. = 1.48). Score of support for HIV mandatory screening The score was built by aggregating answers on 5-point Likert scales (from 1 = strongly disagree to 5 = strongly agree) to the 12 statements about HIV mandatory screening in Table 1. The score was obtained by the formula: RND (C answers-12)/5; minimum = 0, maximum = 10, and had a Cronbach alpha reliability of 0.93. Score of HIV risk perception The score was built by aggregating
answers on 5-point
Likert
scales (from
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1 = strongly disagree to 5 = strongly agree) to the 8 following statements about physical, emotional and social risks associated with care of HIV-infected patients: ‘Physicians are concerned about their own risk of HIV infection’, ‘Physicians are concerned about risk of transmiting HIV to their own family’, ‘Physicians are at greater risk than others of acquiring HIV infection’, ‘Fear of contagion interferes with a physician’s relationship with HIV-infected patients’, ‘Caring for HIV-infected patients is too emotionally draining to be satisfying’, ‘Physician’s stress is higher than when caring for other serious diseases ‘, ‘Physicians are concerned about a stigma from having many HIV-infected patients in the practice’, and ‘Physicians would lose patients from their practice if it were known they were taking care of many HIVinfected patients’. The score was obtained by the formula: RND (C answers-8)/4; minimum = 0, maximum = 8, and had a Cronbach alpha reliability of 0.84. The higher the score, the more the respondent expressed anxiety about risks associated with care for HIV-infected patients. Mean score in the total sample was 3.38 (S.D. = 1.69). Prejudicial evaluation scale A 6-item scale was initially presented to respondents (Table 3). An aggregated scale was built by using the 4 items of Table 3 where significant differences were found according to the type of patient. Coding was (1, strongly disagree; 2, slightly disagree; 3, neither agree or disagree; 4, slightly agree; 5, strongly agree) for the three items ‘Is responsible for his own disease’, ‘Is dangerous to others’, ‘Is expensive for society’ and a reverse coding (from ‘strongly agree = 1’ to ‘strongly disagree = 5’) for the item ‘deserves sympathy and understanding’. The higher the score, the stronger the respondent expressed prejudice toward the patient presented in the vignette. References Ill Working Party of the Royal College of General Practitioners, Human ImmunodeBciency Virus and
the Acquired Immune Deficiency Syndrome in general practice, Journal of the Royal College of General Practitioners, 38 (1988) 219-225. I21 Paauw, D.S. and O’Neill, J.F., Human InununodeBciency Virus and the primary care physician, Journal of Family Practice, 31 (1990) 646-650. [31 Smith, M.D., Primary care and HIV disease, Journal of General Internal Medicine, 6 (1991) S56-S62. 141 Gerber& B., Maguire, B.T., Bleecker, T., Coates, T.J. and McPhee, S.J., Primary care physicians and AIDS: attitudinal and structural barriers to care, Journal of the American Medical Assoctation, 266 (1991) 2837-2842. PI Boyton, R. and Scambler, G., Survey of general practitioners’ attitudes to AIDS in the North West Thames and East Anglian regions, British Medical Journal, 296 (1988) 538-540. I61 Taylor, K.M., Shapiro, M., Skinner, H.A., Eakin, J. and Kelner, M., Understanding physicians’ response to AIDS, Canadian Medical Association Journal, 140 (1989) 597-602. 171 Larsen, J.H., Lassen, L.C. and Miinster, K., HIV infection and AIDS in Danish general practice, Scandinavian Journal of Primary Health Care, 8 (1990) 75-79. Is1 Commonwealth AIDS Research Grant Committee Working Party, Attitudes, knowledge, and behaviour of general practitioners in relation to HIV infection and AIDS, Medical Journal of Australia, 153 (1990) 5-12. 191 Fazekas, C., Diamond, M., M&e, J.R. and Neubauer, A.C., AIDS and Austrian physicians, AIDS Education and Prevention, 4 (1992) 279-294.
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