Influences on Decision Making Among Primiparous Women Choosing ...

OBSTETRICS OBSTETRICS

Influences on Decision Making Among Primiparous Women Choosing Elective Caesarean Section in the Absence of Medical Indications: Findings From a Qualitative Investigation Jude Kornelsen, PhD,1,2 Eileen Hutton, PhD,3 Sarah Munro, MA1,4 1

Centre for Rural Health Research, Vancouver BC

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Department of Family Practice, University of British Columbia, Vancouver BC

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Department of Obstetrics and Gynecology, McMaster University, Hamilton ON

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Faculty of Health Sciences, Simon Fraser University, Burnaby BC

Abstract Objective: Patient-initiated elective Caesarean section (PIECS) is increasingly prevalent and is emerging as an urgent issue for individual maternity practitioners, hospitals, and policy makers, as well as for maternity patients. This qualitative study sought to explore women’s experiences of the decision-making process leading to elective operative delivery without medical indication. Methods: We conducted 17 exploratory qualitative in-depth interviews with primiparous women who had undergone a patient-initiated elective Caesarean section in the absence of any medical indication. The study took place in five hospitals (three urban, two semi-rural) in British Columbia. Results: The findings revealed three themes within the process of women deciding to have a Caesarean section: the reasons for their decision, the qualities of the decision-making process, and the social context in which the decision was made. The factors that influenced a patient-initiated request for delivery by Caesarean section in participants in this study were diverse, culturally dependent, and reflective of varying degrees of emotional and evidence-based influences. Conclusion: PIECS is a rare but socially significant phenomenon. The a priori decision making of some women choosing PIECS does not follow the usual diagnosis-intervention trajectory, and the care provider may have to work in reverse to ensure that the patient fully understands the risks and benefits of her decision subsequent to the decision having been made, while still ensuring patient autonomy. Results from this study provide a context for a woman’s request for an elective Caesarean section without medical indication, which may contribute to a more efficacious informed consent process.

Key Words: Elective Caesarean section, informed consent, qualitative health research, patient choice Competing Interests: None declared. Received on January 26, 2010 Accepted on June 28, 2010

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Résumé Objectif : La césarienne de convenance demandée par la patiente (CCDP) est de plus en plus fréquente et est en voie de devenir une question urgente pour les praticiens de maternité, les hôpitaux et les décideurs, ainsi que pour les patientes du service de maternité. Cette étude qualitative cherchait à explorer les expériences des femmes quant au processus décisionnel menant à un accouchement opératoire de convenance sans indication médicale. Méthodes : Nous avons mené 17 entrevues en profondeur qualitatives exploratoires auprès de femmes primipares ayant subi une césarienne de convenance demandée par la patiente en l’absence de quelque indication médicale que ce soit. L’étude s’est déroulée dans cinq hôpitaux (trois urbains, deux semi-ruraux) en Colombie-Britannique. Résultats : Les résultats ont révélé trois thèmes au sein du processus menant les femmes à décider de subir une césarienne : les raisons motivant leur décision, les qualités du processus décisionnel et le contexte social dans le cadre duquel la décision a été prise. Les facteurs qui ont mené à la demande d’une césarienne par les participantes de cette étude étaient divers, liés à la culture et reflétaient différents degrés d’influences affectives et factuelles. Conclusion : La CCDP est un phénomène rare, mais significatif sur le plan social. La prise de décision a priori de certaines femmes choisissant la CCDP ne respecte pas la trajectoire diagnostic-intervention habituelle; ainsi, il est possible que le fournisseur de soins ait à travailler à rebours pour s’assurer que la patiente comprend bien les risques et les avantages de sa décision après le fait, tout en assurant le maintien de l’autonomie de la patiente. Les résultats de cette étude offrent un contexte pour ce qui est de la demande d’une césarienne de convenance sans indication médicale de la part d’une patiente, ce qui pourrait contribuer à la mise en œuvre d’un processus plus efficace d’obtention du consentement éclairé. J Obstet Gynaecol Can 2010;32(10):962–969

Influences on Decision Making Among Primiparous Women Choosing Elective Caesarean Section

INTRODUCTION

e are currently witnessing changes in our cultural and practical understanding of childbirth, resulting in higher rates of intervention and lower rates of vaginal deliveries.1,2 These changes are believed to have been precipitated by many sociocultural and biomedical factors, including the supervaluation of technology and the diminishing encouragement of self-efficacy offered to women in birth.3–9 The phenomenon of patient-initiated elective Caesarean section (PIECS) is a touchstone for these trends. Investigators in the United States report that 2.6 to 18% of all Caesarean sections result from patient-initiated requests that are not medically indicated.10 A population-based study of Caesarean section trends in the United States found that the incidence of Caesarean section with no medical indication almost doubled from 3.7% in 1996 to 6.9% in 2003.11 In 2006/2007 the Public Health Agency of Canada conducted a telephone survey of over 6000 randomly selected new mothers to learn more about their maternity care experiences and found that 8.1% of women had requested a Caesarean section without medical indications.12 In a Swedish retrospective cohort study, investigators reviewed obstetrical records from 1992 and 2005 to determine whether indications for elective Caesarean section had changed. The primary reasons for an elective Caesarean section in 1992 were breech presentation, abnormal fetal position, and uterine factors, whereas in 2005, the primary reason was fear of childbirth in the absence of medical indications.13

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These findings create some urgency around the issue for individual practitioners, hospitals, and policy makers, as well as for maternity patients. Supporters of PIECS argue that the method of delivery is an issue of patients’ rights, and that hospitals should support a woman’s right to choose her mode of delivery.14,15 However, while respecting patient autonomy means that the physician cannot impose treatments, it does not mean that the physician must provide treatment on demand, particularly if the physician considers such treatment to be inappropriate or harmful.16–18 The decision-making process leading to a patient-initiated elective Caesarean section is a complex one in which notions of patient autonomy intersect with biomedical considerations of risk associated with the procedure. The factors that influence a patient-initiated request for Caesarean section are diverse, culturally dependent, and reflective of varying degrees of emotional and evidence-based influences; women often acquire information through the media, from peers, and from popular childbirth guides, in addition to (or to the exclusion of) evidence-based material.19–21 Although middleclass women often have cultural, material, and educational resources that enable them to understand clinical risks and

benefits expressed in biomedical language, women without these advantages may have difficulty making well-informed decisions about their maternity care and childbirth.22 Physicians’ attitudes and practice styles can also influence Caesarean section rates.23–26 A study exploring obstetricians’ willingness to perform non-medically indicated Caesarean sections in eight western European countries found that a woman’s history of Caesarean section, having experienced intrapartum fetal death, having had a traumatic delivery, or having a disabled child were seen as salient reasons for performing PIECS.27 The PIECS phenomenon precipitates the need to consider ethical implications and the role of informed consent for an elective procedure. Supporters of PIECS argue that choosing to undergo an operative delivery is no different from seeking cosmetic surgery.8 Detractors argue that with the lack of evidence available, women do not have enough information to make fully informed, autonomous decisions about Caesarean section.26,28,29 Previous research examining elective Caesarean section has explored the role of patient choice within the context of indications for the procedure. Marx et al.30 reported findings from a survey of obstetricians to determine indications for elective Caesarean section noted in patient charts, and found that only five of the 75 procedures (7%) were patient-initiated without medical risk factors, while a more substantial 50 of the 75 procedures (66%) were due to a combination of obstetrical indication and patient choice. This emphasizes the maternal influence on decision making in medically ambiguous situations,30 findings supported by other research.31,32 Others have shown low rates of PIECS in the absence of a medical indication5,14 and high levels of involvement and satisfaction in the decision-making process leading to an elective Caesarean section or PIECS.32–35 Likewise, socio-cultural influences on the decision-making process have been documented.9,36–38 There is increasing documentation of patients’ roles and degrees of involvement in the decision-making process regarding mode of delivery in the absence of medical indication, but there has been a lack of qualitative findings on primiparous women’s motivations for choosing PIECS. The current study was designed to help bridge this gap, and focuses on the participants’ decision-making process, followed by an analysis of the narratives within the context of informed consent. METHODS

Using grounded theory techniques,39 we conducted in-depth, open-ended interviews to determine the attitudes and decision-making processes of 17 primiparous women who underwent elective Caesarean section in the absence of medical indications. OCTOBER JOGC OCTOBRE 2010 l

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The study population consisted of 17 women who gave birth by PIECS at one of seven study sites between 2003 and 2005 (the 24 months prior to the onset of the study). Participants were primiparous at the time of their delivery, were at ³ 37 weeks’ gestation at delivery, and did not have any of the following medical indications: as transverse lie, placenta previa, placental abruption, severe preeclampsia and eclampsia, hypertension, placental insufficiency, maternal genital herpes, previous vaginal repair, and congenital uterine abnormality. Multiparous women were excluded from the study to eliminate the influence of previous stressful, traumatic, or unsatisfactory birth experiences. Additionally, women reporting a history of sexual abuse, mental illness, or other socially complex circumstances were excluded due to potentially confounding issues that may arise for them during labour and delivery. All participants were recruited from urban or suburban settings. Sample size was determined by the standard grounded-theory protocol of interviewing participants until data saturation was reached (no new concepts were reported by participants).39 Study sites included five urban maternity hospitals (with 650 to 3600 births per year over a three year average) and two semi-rural hospitals (with 1100 to 1400 births per year over a three year average) in four regional health authorities. Initial third-party recruitment of participants was conducted by hospital antepartum and labour ward nurses who approached potential participants (identified by chart notation) when they entered the ward. Labour nurses were involved to ensure that any potential participants who were missed by the antepartum nurses were appropriately approached prior to the onset of the procedure. A contact was identified at each hospital and information sessions were held to introduce the study, review the recruitment protocol with ward nurses, and provide written materials. The protocol involved identifying potential participants in the antepartum period who met the study criteria and who agreed to be contacted about the study (as opposed to agreeing to participate). The research team then contacted potential participants to obtain consent to participate in the study and to arrange a time for an interview. Full consent, including consent for audio recording, was obtained at the start of the interview. The second phase of our recruitment strategy involved third-party recruitment through community-based public health nurses who conduct postpartum visits in hospital catchment areas. The same introductory session was offered to these nurses. Recruitment was also undertaken through poster advertisement in 25 obstetrician-gynaecologists’ offices attached to six of the seven study sites and a paid four-month advertisement in a popular local free monthly parenting magazine with a circulation of 40 000 available 964


through medical clinics, hospitals, doctors’ offices, community centres, libraries, and certain retailers. To ensure that women were not inadvertently introduced to the possibility of an elective Caesarean section, the posters and advertisements were targeted at anyone who had undergone an elective Caesarean section for their first delivery with further screening done on initial contact. All women who met the study criteria at all stages of recruitment were invited to participate. A total of 17 interview participants were recruited: 12 through third-party recruitment in antenatal hospital wards, four through the magazine advertisement, and one through a public health nurse. Recruitment was stopped when data saturation was reached. Data collection took place in the participants’ homes or at a location convenient to them (two at work, the remainder at home), with two members of the research team present, one responsible for conducting the interview and one responsible for note-taking. All interviews lasted from 30 to 90 minutes, with an average duration of 60 minutes. The interviews took place at least six weeks postpartum to allow participants to recover from the procedure; the decision to avoid interviews of prospective elective Caesarean section patients was made to ensure that the interview process did not lead to increased interest in the procedure in women who had not clearly decided on their mode of delivery. The lead question for the interview was “Tell us about your decision to have a Caesarean section.” Subsequent probes, where necessary, included, “When did you make your decision?” “What sources of information informed your decision?” “Who had input into your decision-making process?” and “Did you experience resistance to your decision?” Tapes were transcribed and then analyzed in four stages, theoretically guided by the constant comparison method: 1. immersion in the transcripts (reading and re-reading); 2. the development of themes and codes; 3. coding the transcripts; and 4. re-integrating the codes into an explanatory narrative.39 The principal investigator and a research team member independently read the transcripts and developed code books (a list of derived themes and codes). The two code books were compared for congruency before the transcripts were coded. The researchers achieved almost perfect conceptual congruency regarding emerging themes and codes, and some modifications were made to increase semantic congruency. The principal investigator coded all of the transcripts and, to compare consistency in the application of the concepts, a research team member also coded six transcripts. There was a high level of consistency between the two researchers at this level as well. Coded


transcripts were placed into the NVivo data management program (QSR International Inc., Cambridge MA) and each theme was written into narrative form. Ethics approval for the study was sought and obtained through the appropriate university Behavioural Research Ethics Board at the University of British Columbia and individually through each study hospital. RESULTS

Participants’ narratives revealed three themes: 1. participants’ decision-making process, 2. attributes and experiences of elective Caesarean sections, and 3. the influence of birth stories on attitudes towards mode of delivery.38 Participants described three realms within their decision making: the reasons for their decision, the qualities of the decision-making process, and the social context in which the decision was made, each of which will be described below. Reasons for Choosing an Elective Caesarean Section Although participants offered an array of reasons for their decision to have an elective Caesarean section, most expressed resoluteness about their decision, many noting they had always known that is how they would give birth. Within this context, factors contributing to their decision precluded an informed consent process and were seen as confirmatory as opposed to contributory. They included reasons of physiology (family history of difficult labours/Caesarean section, the presence of an underlying medical condition, and age), social influences (primarily family and friends), and fear (of pain or bad outcome associated with a vaginal delivery). Physiological influences focused primarily on physical attributes and family obstetric and health history. The influence of how the pregnant woman herself was born was thematic to many responses, with many participants noting that they were born by Caesarean section and some noting that if this had not been the case they might not have opted for an operative delivery. The other significant physiological influence in the decisionmaking process was advancing maternal age as both a correlate to the perception that a Caesarean section would be needed and as a factor in increasing feelings of fragility and vulnerability. Likewise, the influence of the experiences of other older mothers played into respondents’ decision making. In some instances this sense of biological destiny converged with other precipitating—also age-related— factors to influence the choice in mode of delivery. Many

women revealed the challenges they had in conceiving their children and how this sense of precariousness and vulnerability led to the desire to ensure what they felt would be the best possible outcome and to reduce risks for the baby, even at the mother’s expense. Many participants perceived that the risks to their baby of a vaginal birth were greater than those attributed to Caesarean section. Closely related, although not identical, to physiological influences in the decision-making process was the existence of underlying medical conditions. Although these conditions may have warranted an operative delivery in some instances, for participants in this study they were less of a motivating influence and more of a strategic tool used in the informed consent process to guarantee access to the procedure where limited access was perceived. Several conditions that were frequently noted in this context included uterine fibroids, a history of genital herpes, hemorrhoids, and back pain. Physician support for Caesarean section on the basis of an underlying medical condition was inconsistent. Although some participants received support from their care providers in these instances, others noted that their physicians were reluctant to support a Caesarean section on the basis of non-indicated physiological conditions. Social reasons implicated in the decision-making process centred on the influence of family and friends, usually through birth stories, with negative vaginal birth stories figuring prominently.38 For most of the participants, negative birth stories accentuated existing fears of childbirth. Although vague expressions of fear of childbirth were common to most participants, many focused very specifically around fear of pain. The synonymy between natural birth and pain was clear in participants’ descriptions. For others, fear of vaginal birth resulted in other even stronger reactions of horror and revulsion. The Process of Decision Making For most of the participants the process of decision making was marked by informed consent discussions with their care provider(s), understanding the evidence through research, and support from their physicians. For all participants in this study the informed consent process was confirmatory in their decision-making process, as opposed to challenging. Many talked of the clarity with which their obstetricians explained the risks and benefits and their willingness to answer questions in a straightforward and supportive way. Ultimately, what was most important to the participants was the sense of support they felt for their decision to have a Caesarean section. Many spoke positively of their care providers’ support for the decision, which was described in terms of reassurance and cooperation. Some women noted OCTOBER JOGC OCTOBRE 2010 l

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that care providers’ positive descriptions of the surgery reinforced their decision to give birth by PIECS. For some respondents the informed consent process was less rigorous then they anticipated. One compared it to the more stringent process of consenting to an amniocentesis and noted her surprise over the lack of comparable decision points. The perceived lack of rigour in the informed consent process may have been due in part to the high level of awareness that all participants had regarding Caesarean section. Detailed knowledge of the range of potential risks and prevalence of morbidities was expressed by participants in this study alongside interpretations of knowledge of risks of vaginal delivery (focusing on risks to the pelvic floor, sexual function, and incontinence). This information often came from non-medical sources, including the Internet, popular books on childbirth, and television programs like A Baby Story. 38 Among these, popular books and magazine articles were highlighted as most influential within the decisionmaking process by most of the participants. Often women brought this information to their care providers to confirm its validity. In such instances, the informed consent process worked in reverse and was a matter of discussing the risks and benefits of different modes of delivery after the woman’s choice for PIECS had been made. Although all participants felt well-supported by their obstetricians, several noted the lack of support within the decision-making process they felt from their family physicians about their desire to give birth by Caesarean section. Others noted their physician’s reluctance to condone the procedure in the absence of reasons for it, causing conflict in the informed consent process. As family physicians were the first point of contact in pregnancy for all the participants in this study, their reluctance to condone an elective Caesarean section without a medical indication was perceived as obstructive and led to participants invoking strategies (like the use of existing medical conditions) and, ultimately, adopting a sense of determination. Many noted a willingness to pay for the procedure, despite the lack of a mechanism to allow for this. Several others expressed a willingness to leave the country to secure access to the procedure had that been necessary. The Decision-making Context Participants in this study clearly described the social context within which their decisions were made. It included recognition of the prevalence of Caesarean section as a mode of delivery, a general openness to the elective procedure based on individual rights, and a growing consumer-model approach to health care. More negatively, they also described an awareness of being judged as part of the social context of their decision making. 966


Participants reflected on others’ experiences of having a Caesarean section despite the women’s best intentions of delivering vaginally. The perceived ubiquity of emergency Caesarean sections influenced some participants’ decision for PIECS. Likewise, when others who desired a vaginal birth ended up having an emergency Caesarean section, participants in this study took note. For many of the participants in this study, the fact that it was even possible to request a Caesarean section without a medical indication represented forward progress in women’s reproductive rights. As this consumer right had become the baseline expectation for participants, some were critical of hospitals that had chosen not to allow the procedure. Most participants expressed the belief in an inviolable “right” to determine their mode of delivery as part of their agency in birth. Others linked this right more directly to the concomitant responsibility that follows from it. For some respondents, challenges to their perceived right to decide on their mode of birth was linked to gender issues, and for many it was linked to a sense of being judged. DISCUSSION

Research indicates that while many factors are complicit, the decision to have a patient-initiated elective Caesarean section with no absolute indicators is most often a combination of patient preference and obstetric reasons that alone would not necessarily indicate the need for a Caesarean section.30 Findings from qualitative interviews with the 17 primiparous women in this study indicate that complex social, physiological, and cultural factors had an impact on the decision to undergo an elective Caesarean section in the absence of medical indication. Women in this study expressed resoluteness about their decision to give birth by PIECS. Factors influencing their decision included physiology (family history of challenging deliveries and Caesarean section, underlying medical conditions, and advanced maternal age), the childbirth experiences of peers, and fears of vaginal delivery or harm to their baby. For all participants, the consent process itself functioned as a way to confirm their decision and gain buy-in from their care provider, which was required to secure a referral to the obstetrical care required for the procedure. Many felt, however, that their informed consent discussions lacked rigour, while some cited popular books and magazines as highly influential sources in their decision-making process. Participants felt that physicians who declined to support delivery by PIECS were obstructive and unsupportive. These physicians challenged what participants perceived to be their inviolable reproductive and consumer rights to choose the mode of delivery. Additionally, many women noted that they experienced a lack of support for PIECS


within social settings and felt judged for their decision not to experience an unmedicated or vaginal delivery. The informed consent process that leads to PIECS is uniquely characterized by the a priori nature of decision making by the patient. Ideally, informed consent is based on evidence and the judicious conveyance of knowledge,40 and it should involve clear disclosure of relevant information in a way that is free of manipulation or coercion,41,42 is understood by the patient and care provider,17 includes alternative interventions and adverse consequences, and results in procuring agreement or consensus on a course of care.43–48 A care provider must legally and ethically convey the relevant information through an appropriate informed consent process whether or not the patient requests the information.18,49 Many have suggested that an effective informed consent process requires a dialogic model of information exchanges involving three distinct stages (even though in reality they may occur together or in an iterative process). These stages include (1) information exchange, (2) deliberation about treatment options, and (3) deciding on the treatment to implement.50,51 Once this process has occurred, decisions about care can be made. With PIECS, challenges to informed consent in general include patients’ a priori decisions on their course of care, based on an array of information sources that may or may not reflect current evidence. Further challenges include conflicting perspectives on appropriate care between patient and care provider50,51 and the lack of time available to care providers for a dialogic process due to clinical demands and the skills necessary to engage in iterative conversations with patients.29 Further challenges to the informed consent process include cultural influences and the significant amount of information acquired through the media, peers, and popular childbirth literature,21,38,52 which suggests that cultural and socioeconomic values play a significant part in women’s decisions to give birth by PIECS.36,53 Within the context of international calls for a reduction in Caesarean section rates,54 our study attempted to uncover women’s decision-making processes and calls for the adoption of a more judicious, structured informed consent process in cases of patient requests for Caesarean section, a process outlined by others.55,56 These discussions should consider all facets of women’s decision making, including the various social, physiological, and psychological reasons for women’s requests. Limitations to this study include the limited geographic scope of the research and the exclusion of non-Englishspeaking participants, some cohorts of whom have a stronger predisposition to PIECS.57,58 Further, we did not interview women who intended to undergo an elective Caesarean

section but were unable to do so. As with all qualitative research, self-selection of participants must be recognized as a limitation. CONCLUSION

Decisions about and consent for the mode of delivery differ from those in most other medical situations as pregnancy is clearly time-limited with physiologically predictable outcomes and an end date. It is imperative that the unique situation of PIECS and our growing understanding of the socio-cultural influences faced by some women inform strategies to ensure an efficacious informed consent process within the context of the individual. This includes the need for care providers to recognize and to explore the roots of fear of childbirth occurring within the context of family history and exacerbated by the lack of meaningful sources of information about the risks of all modes of delivery. “Willingness to pay” for the procedure, as indicated by some of the participants in this study, is perhaps less of a realistic challenge within our current health care system and more of an indication of the importance of access to the procedure that some women feel. This study provides the tentative first steps towards understanding primiparous women’s decision-making process regarding PIECS, which may guide the development of a protocol for a well-defined informed consent process for care providers and patients choosing Caesarean section without medical indication. ACKNOWLEDGMENTS

The authors gratefully acknowledge the open participation of the women we interviewed and the help of the nurses involved in recruitment. This research was supported through a Canadian Institutes of Health Research Pilot Projects grant and a Social Sciences and Humanities Research Council of Canada’s Standard Research Grant. Appreciation is also extended to project team members: Lana Sullivan, Thea Mitchison, Erin Price, Nicole Fairbrother, Jenessa Balmer-Labreque, Marijke De Zwager, Shelagh Levangie, and Kathrin Stoll. REFERENCES 1. Notzon FC, Placek PJ, Taffel SM. Comparisons of national caesarean section rates. N Engl J Med 1987;316:386–9. 2. van Roosmalen J, van der Does CD. Caesarean birth rates worldwide. A search for determinants. Trop Geogr Med 1995;45:19–22. 3. Béhague DP, Victora CG, Barros FC. Consumer demand for caesarean sections in Brazil: informed decision making, patient choice, or social inequality? A population based birth cohort study linking ethnographic and epidemiological methods. BMJ 2002;324:942–25.

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