the Context of Prenatal Care ... Key words: amniocentesis, health care, prenatal care; Canada, Ontario ... network, which expanded into the United States.
Human Organization, Vol. 55, No. 2, 1996 Copyright @ 1996 by the Society for Applied Anthropology 0018-7259/96/020178-5$1.00/1
Patients Who Get What They Want: Policy and Power in the Context of Prenatal Care DAPHNA BIRENBAUM-CARMELI AND YORAM S. CARMELI This article examines a request for amniocentesis, a prenatal screening test, for a middle-class,professional couple in a a major city in Ontario, Canada. The unfolding of this case over time permits analysis of some practices employed in the Canadian and in the U.S. health care systems, especially insofar as these practices can be influenced by participants' technical knowledge, social networks, and willingness to persevere in the face of bureaucratic obstacles to "get what they want." Key words: amniocentesis, health care, prenatal care; Canada, Ontario
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ince its introduction some two decades ago, prenatal screening by amniocentesis has been in increasing demand in Western countries, to the point of effecting the decision to try to become pregnant (Nightingale and Meister 1987:4; Terzian et al. 1985; Blumberg 1984:205; Swerts 1987:62). These trends have been attributed to a growing awareness of the test, as well as a rise in the rate of women conceiving at relatively advanced ages. For instance, in Turku, Finland, between 1986-1990, 88% of pregnant women over 40 had amniocentesis or chorion villus biopsy (Ekblad and Vilpal994). Recently, mid-trimester amniocentesis has been described as the gold standard approach for prenatal cytogenetic diagnosis (Stone and Lockwood 1993). The application of amniocentesis raises various difficulties. The procedure is costly. and also involves both a risk of miscarriage and a small probability of harm to the fetus's lungs (Milner et al. 1992) and eyes (Naylor et al. 1990). Moreover, professionals are divided on how to define the high-risk populations who should obtain the test (Cornel 1994; Sheldon and Simpson 1991; Fleming and Goldie 1992). In this article, the difficulties surrounding the application of amniocentesis and the processing of requests for the procedure will be used as a vantage point for touching upon two related issues in the sociology of health services. The first concerns the relevance and impact of ethical, professional, and economic pressures on professional practice and health policies. The second concerns the power relations between patients and health professionals. Many studies on the latter issue focus on the oppressive promotion of amniocentesis by health professionals (Katz-Rothman 1987:5 1-63). We aim at a less frequently
Daphna Birenbaum-Carmeli is at the Ruppin Institute, EMEQ Hefer, Israel. Yoram S. Carmeli is at the Department of Sociology and Anthropology, University of Haifa, Haifa, Israel, 31905.
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discussed problem: that of claims and demands presented to professionals by their clients. These demands are examined in terms of general trends toward some disclosure of medical knowledge as well as clients' manipulations of social and cultural resources. This article traces a case of a request for amniocentesis, made in Ontario, Canada, which also involved some consultation with American professionals. The unfolding of the request over time allowed us to witness some practices employed in the Canadian system of health care, as well as to take a comparative glance at its American counterpart. The couple under study was known to us from personal acquaintance.Their negotiations with health care providers were followed through our constant communication with them. As we started to trace these negotiations systematically (starting in mid-1992), our relations with the couple became closer, providing a basis for interviews, as well as some participant observation of their quest. (The female researcher was allowed to attend several consultations. We were also allowed to record important telephone calls). The couple under study were middle class professionals. They resided in a major city, and were well-anchored in a social network, which expanded into the United States. The couple had previously undergone several years of fertility treatments, during which they acquired considerable understanding of gynecologists' practices. Their knowledge went beyond the information exchanged among patients, volunteered by physicians, or marketed in popular books, and included reading of professional material. (For similar profiles, see Rapp 1991). When the woman conceived, early in 1992, they became absorbed in their concern for the outcome of the pregnancy. From medical literature they learned about the prevalence of Down' s Syndrome. Their ideas about their own future, as well as the life of the much desired child, led them to believe they should do their best to ensure that the fetus was unaffected. Their treatment history, which included a late miscarriage, did
not weaken, but rather enhanced this conviction. They therefore started exploring the possibility of amniocentesis. (see Pauker and Pauker 1987: 161- 162; Hamel et al. 1993 for the overrepresentation of a highly educated, urban population among amniocentesis patients). In Canada, amniocentesis was declared "a safe, accurate and reliable procedure" in the mid-1970s (Simpson et al. 1976). and has been in increasing demand since then. From 20 tests performed in 1970, the figure grew to 5,404 in 1987, with 3040% of pregnant women aged 35 and up obtaining the test (McDonough 1990). In 1992, amniocentesis was available free of charge to every woman of 35 or older at the time of expected delivery and for younger women with elevated risk for fetal chromosomal abnormalities. The procedure was performed in hospitals by in-house obstetricians who specialized in amniocentesis, but was not available outside the public system, even for payment. According to Canadian criteria, the woman in the couple we followed was placed just outside the "high risk category" by her age (34 at the time of delivery). Nevertheless, the couple decided that they wanted to obtain the test. The first step towards obtaining amniocentesis was made by the couple when the woman was 16 weeks pregnant. Their obstetrician responded to their request by highlighting the risk of miscarriage and the low probability of abnormalities in women younger than the cut-off point of 35 years old. For further information, he referred the couple to the prenatal genetic counseling unit in the hospital. However, here they only enacted further obstacles, as Canadian counselors have little room to manipulate the criteria of eligibility. Their main task is to mediate between the system and its patients, providing information and support. When addressed by the couple, the counselor explained that they were definitely not eligible for the test. Facing a refusal, the couple started looking for alternative prenatal screenings. They approached another genetic counselor personally known to them via friends. From her they heard about the "triple screening test", which provides a rough approximation of a woman's personal risk for chromosomal anomalies. The triple screening test yields a woman's individual risk for Down's syndrome in a particular pregnancy, on the basis of her age, gestational age, and levels of maternal serum alpha feto-protein, Hcg, and estrio. Using the average risk of a 35 year old as a cut-off value, some 60% of all Down's syndrome pregnancies are labelled 'high risk' (i.e., potentially positive) to be further investigated by amniocentesis.The couple was told that this test, not officially being offered at that time, was nevertheless performed in a few small hospitals. Assisted by this contact, the couple approached another genetic counselor in a small hospital and managed to take advantage of the triple test. The test results, which were interpreted by the in-house counselor as "negative", were only 0.025% above the "high risk" cut-off point. In the light of the test's results, the couple's initial wish to obtain amniocentesis intensified, and they returned to the larger hospital to consult with the genetic couselor whom they had seen previously. Once again they were rejected. In addition to the medical reason already given, the counselor then raised the economic bureaucratic argument that requests of concerned couples were too numerous to be approved as exceptions. Responding to the woman's perseverance, the counselor supported these
arguments with statistical figures concerning the risk of miscarriage added by amniocentesis, which she presented as 1:200. The figure of 1:200 was presented by the counselor against the risk of 1:420, which she depicted as the woman's individual risk for Down's syndrome. The possibilies of fetal harm or misdiagnosis in amniocentesis, which the woman brought up, were dismissed by the counselor. Here one faces the flexible nature of presenting statistical figures (Vlek 1987:175,178; Kaufert and O'Neil 1993; Rapp 1993). The probability of 1:420, presented as the couple's personal risk, relates to the probability of Down's syndrome alone at the time of delivery. It does not include other chromosomal anomalies, which together are as prevalent as Down's syndrome, thus doubling the risk of carrying an affected fetus. The figure of 1:420 also ignores the higher probability that a fetus is affected at the time of the test compared to those who survive to term, since some of the former are miscarried spontaneously (Hook et al. 1989). Another bias in the presentation was the omission of other risks, such as possible harm to the fetus or a misdiagnosis ( Roland et al. 1990 ). At the end of their conversation with the counselor, the couple was led to understand that their request would not be approved in the large hospital. However, the counselor volunteered that hospitals which do not use up their quota of tests can admit a few women under the rubric of "maternal anxiety". At the same time, she reiterated the added risk of miscarriage and concluded: "you realize you may be risking your baby for a very small chance that something is wrong." The couple approached the small hospital and, after some negotiations, were granted permission for the test. However, before taking the test, the couple returned once again to their obstetrician in the large hospital. Reiterating his previous stance, he depicted the added risk of miscarriage as 1:100, and concluded that "most babies lost because of amniocentesis are normal, healthy babies." When we met the couple after these consultations, their anxiety seemed very high. They explained that they felt trapped between the fear of chromosomal aberrations and the risk of miscarriage. This latter risk, accompanied by the reproaching overtones and the couple's painful reproductive history, made the procedure especially threatening.The couple's apprehension led them to share their concerns with more of their friends. Some of these friends were living in the United States. Through the exchanges with these friends, the couple encountered a different, more approving approach to amniocentesis among American professionals. Although the American professionals merely provided recommendations, one can learn from their responses about American attitudes towards amniocentesis. The first American health professional whom the couple approached was a geneticist working in a leading American clinic and research institute. Having heard the couple's account, the geneticist concluded: "Some people wish to do the test but will not consider termination of a pregnancy, no matter what the results are. You sound as if you want to do anything possible in order to have a healthy baby, so I think you should do the test. If you remember that the rate of congenital anomalies is about 3% then the total risk is about 1:30. So you can say, 'what the heck is another 1:200' It [amniocentesis] is generally considered a safe procedure." Somewhat encouraged, the couple asked another American friend to present their case to her obstetrician. The obstetrician's V O L . 5 5 . NO 2
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reply was similar to that of the first American professional: "What's the question? Of course she should do it." He attributed most of the added risk of miscarriage, accentuated by the Canadian counselors, to mistakes of inexperienced practitioners. Still reluctant, the couple called yet another American obstetrician, who was mentioned to them by friends who had spent several years in the U.S. The obstetrician was surprised to hear about the presentation of the procedure itself as a major reason for concern. He quoted somewhat different figures than those mentioned by other professionals. The added chance of miscarriage (rather than "losing your baby") ranged, according to this obstetrician, from 0.3% to 0.5%, while the chance of chromosomal abnormality at the age of 34 was about 0.8%. The difference stemmed from the reference to all chromosomal abnormalities at the time of the test, which significantly increased the risk of abnormality. The approving attitude, which the three American professionals shared, helped the couple decide to carry out the test. When they called the smaller hospital in their hometown, in order to set a date for the test, the counselor who had admitted them to the procedure still expressed her reservations: "If you thought of the risk, and you still think you want to go ahead with it, then ..." Similar reluctance was also communicated by the couple's obstetrician, from whom they had to obtain a referral: "Maybe you should come first for an anatomic ultrasound scan, and then, if everything is fine, we'll try to discourage you for the last time from doing the amnio." However, once the couple made up their minds and scheduled the test, they encountered a different facet of the Canadian system, which became a source of encouragement for them. The first encounter took place at a social gathering. In a party held by the genetic counselor, with whom they were acquainted socially and who informed them about the existence of the "triple screening test," the couple met another genetic counselor, who was not involved in their request and was unaware of the barriers they had faced. Assuming that the woman was properly entitled to the test, he expressed his surprise at the extent of concern about the procedure that the couple expressed: "You worry about the procedure? No, you shouldn't. I wouldn't waste a night's sleep over that. Waiting for 3-4 weeks [for results] is the difficult part. Tuesday [the scheduled day for the procedure] is the easy part. The test is nothing, really." Two days later, in a talk with the operating physician, the couple encountered a similar attitude. This Canadian obstetrician estimated the added risk of miscarriage as "probably less than 1:200," and even lower in the woman's advanced gestational age (18 weeks). After the consultation, they received standard information provided by the hospital to all amniocentesis patients. They noted that the figures depicted in this material differed somewhat from those presented by the counselors in their earlier consultations. The risk quoted was for all chromosomal abnormalities (rather then Down's syndrome alone) and was depicted as 1:200 at the age of 35. For this particular couple (the woman being 34), the operating physician listed 1:250 as the respective figure. The couple was reassured by the new information. However, at this stage of their quest they had already developed some suspicion towards the evaluations and information presented to them. Certain doubts vis-a-vis professionals had initially emerged when they were unofficially referred to the small 180
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hospital in order to obtain the test disapproved in the large one. Their apprehension further developed as the partiality of the information provided to them became more evident: they noticed that while the probability of miscarriage (presented as 1:200) was highlighted as a source of concern, a similar probability (1:250) from chromosomal abnormalities was dismissed by the professionals as negligible. One may note that while the figures presented to the couple were not incorrect, their presentation may be perceived as directive. We end here our account of this request for amniocentesis (eventually performed, and followed by the birth of a healthy baby). In the following discussion, we use the case history to illustrate some economic and political contingencies of health care systems, as well as some possible implications for professional-client power relations.
Conclusion Canadian and American health care providers share the same scientific world. All professionals whom the couple approached referred to the same body of knowledge and quoted similar figures. Hence, the differences in their presentations and subsequent recommendations cannot be attributed to medical disagreement, but rather to professionals' convictions, which vary with the respective politicaleconomic framework and eventually affect their reading of statistics, as well as their recommendations and decisions. In Canada, the "publicly funded private system" of health care (Vayda and Deber 1992) embodies the Canadian "special form of state paternalism" (Berton 1980:314). With the Canada Health Act of 1987, the system became universal and comprehensive. As noted above, it also covers amniocentesis. However, the implementation of national health insurance took its toll. In Ontario, health expenditures rose considerably, reaching, in 1992,30% of the province's spending (Vayda and Deber 1992). In order to control the rising costs, Ontario (and other provinces) employed cost containment procedures and closer inspection of expenditures. Coupled with a strategy of global budgeting, a certain interest in reduction of surgical procedures has arisen. These pressures can be traced in our case study. The inability to accommodate all women seeking amniocentesis translates into systemic pressures. In the context of medical and welfare considerations, economic pressures eventually find expression in counselors' presentations of information. Because the issue at stake - possible chromosomal aberration - has crucial implications for prospective parents, an economic reason for denying them the procedure probably appears improper (if not immoral). Employees of the Canadian system thus set aside economic restrictions and highlight medical concerns like the risk of miscarriage, in a somewhat reproaching tone. Practitioners thereby engage in dissuading women from obtaining amniocentesis more convincingly. There is, however, a complementary facet of the Canadian system of rules and restrictions that provides some outlets by which formal policies can be circumvented. The referral of the couple to the smaller hospital for the triple screening and for amniocentesis, to which they were formally not entitled, is a case in point. The performance of the tests in a smaller, less-in-demand hospital, testifies to the weight of economic considerations in the
provision of health services. A t t h e s a m e time, these circumventions are not within everyone's reach. If the public, universal health insurance reflects Canadian approval of a socialist-type commitment, then the continued rejection of national health insurance programs (with the partial exception of Medicare and Medicaid programs aimed at those already labeled and judged a s dependent) reflects the repudiation of such ideas by Americans, most of whom are insured privately (Kunitz 1992). To them, amniocentesis is available, like other prenatal screenings, on a fee-for-service basis. As depicted in our case history, American professionals approve of amniocentesis: Practitioners recommend it (KatzRothman 198752) and administrators praise its societal costbenefits (Cooper 1976). The procedure is performed by the majority of obstetricians (rather than being limited to specialists, as in Canada), who are paid for it and may thus have a financial interest in promoting its use. American practitioners tend to marginalize the risks associated with the test; while not concealing the risks, their likelihood is presented as minimal, in a reassuring manner that weakens rather than enhances anxiety. The principles of amniocentesis allocation employed in each system bring up questions of social equity and discrimination. In the U.S. the test is not within everyone's reach due to its high costs which many insurers do not cover (Greenstein and Gardiner 1988:21). Usage rates of the test vary from one area to another, and general statistics seem to be unavailable, although the test is used substantially less frequently by black women (Brett et at. 1994). In Canada, women younger than 35 are excluded. In addition, studies show that usage rates also vary ethnically; i.e., various ethnic groups are underrepresented among amniocentesis users (Moatti et a l . 1990; Wiener e f a l .1990). That class and ethnocultural differences in usage rates are found in both the U.S. and Canada reveal the relevance of non-economic variables. Our case points to some of the other resources (though in operation on the other side of the social scale) brought to bear on modem systems of health care. This case illustrates the growing access to information and the potential of intersystemic flow within the context of Western rationalized medical knowledge. This trend toward the opening of medical knowledge (e.g., on-line data bases, popular medicine books, and documentaries) facilitates comparisons and critical consumption by lay persons. It enabled the couple in this case to evaluate different recommendations given by Canadian and American health care practitioners, and eventually to unveil some contingencies in the Canadian health policy. This growing access to scientific knowledge can lead to some demystification of professional power and uncover some arbitrariness within health policies. However, this opening and democratization seems to operate on a selective basis. Only those patientstclients - like our couple - with economic, as well as social and cultural resources, can take advantage of it. The couple's cultural capital enabled them to acquire some proficiency in dealing with the medical system. Their social network provided the basis for acquaintance with more than their domestic health care system, which created a vantage point for a critical view of health policies. Their general social stance allowed them to negotiate rather equally and effectively with health professionals. Thus, such resourceful people can take advantage of opportunities
available within a given health care system, and advance their own interests, even if these are in conflict with social policies. As such opportunities for manipulation of the system, and eventually access to services, are not distributed equally, the trend towards democratization of knowledge, a potential source of power to patients, may well become the privilege of a small, affluent population, thereby creating yet another source of social inequality.
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