Volume 170 Issue 12

Research Women's role and satisfaction in the decision to have a caesarean section Deborah A Turnbull, Chris Wilkinson, Anisa Yaser, Vanessa Carty, John M Svigos and Jeffrey S Robinson MJA 1999; 170: 580-583 For editorial comment, see "de Costa" Rapid reader response (with authors' reply) added 28/6/99: see Chung Abstract - Introduction - Methods - Results - Discussion - Acknowledgements - References - Authors' details - - More articles on Obstetrics & gynaecology and women's health Abstract Objective: To examine women's role in the decision to perform caesarean section (CS). Design: Cross-sectional survey. Written questionnaires were completed seven weeks after giving birth by CS. Setting: An obstetric tertiary referral hospital (Women's and Children's Hospital, Adelaide, South Australia), July to December 1996. Participants: A consecutive sample of women who underwent CS over a six-month period. To be eligible, women had to be at least 18 years old, able to complete a questionnaire in English and well enough to consent to study participation. Main outcome measures: Women's involvement in decision making, stated preference for CS, and satisfaction with obstetric care. Results: 278 women (76.4%) returned questionnaires: 171 women (61.5%; 95% confidence interval [CI], 55.8%-67.2%) reported being involved in the decision to have a CS. Factors influencing their decision were physical duress and partner's reaction during labour (emergency CS), considerations about recovery, planning for the event and pain (elective CS), and information from the doctor (both groups). Half the women "strongly agreed" that they were satisfied with the decision to have a CS, but 40.9% only "agreed" and 4.7% were "not sure". About 20% reported they needed more information on other options, and only 28.8% "strongly agreed" that they had been given good information to prepare for the possibility of CS. 27.9% of women (95% CI, 22.5%-33.2%) "agreed" or "strongly agreed" that they had "insisted on a CS" and 21.3% (95% CI, 16.4%-26.2%) that they had told the staff they were "keen to have a CS". Given the option of a vaginal delivery, 37.8% of women (95% CI, 22.5%-55.2%) with a breech presentation, and 34% of women (95% CI, 21.2%-48.8%) who had had a previous CS, chose a CS. Conclusions: It is of concern that over a third of women felt they had not been involved in the decision to have a CS; others were very positive about CS, but an appreciable proportion may not have received sufficient information. A broad-based strategy of providing more information to women and their partners could be one way of ensuring appropriate CS rates and should be tested in a randomised controlled trial. Introduction Despite national policy documents calling for a reduction in medical interventions in birth,1 Australia now has one of the highest caesarean section (CS) rates among First World countries.2 At the same time, it is recognised that the "ideal" or "correct" rate is difficult to derive,3 given the varying risk profiles of women attending different institutions. A range of strategies aimed at obstetricians4,5 have had limited success in reducing CS rates. The assumption is often made that the decision to perform a CS is made on clinical grounds only.6 The role of maternal request in decision-making has been raised,7 but so far studies from the woman's perspective have tended to use small samples with unique characteristics.8,9Our study examines the role of women in the decision to have a CS in an effort to identify an alternative approach to lowering the rates. Methods Setting The study was conducted at the Women's and Children's Hospital in Adelaide, South Australia. In 1996, this State had the highest CS rate of any State in Australia (23.1% v. national average of 19.5%).10 The Women's and Children's Hospital is a major obstetric tertiary referral centre for South Australia and much of the Northern Territory. In 1996, 23% (811/3536) of the women giving birth at the hospital were considered to have very high risk pregnancies and the CS rate for high risk pregnancies at the Women's and Children's Hospital was 43.9% (356/811).11 During that year, the overall CS rate was 25.4% (898/3536). Sample Over a six-month period (July to December 1996) questionnaires were sent to consecutive women who underwent CS. To be eligible for our study, the women had to be at least 18 years old, able to complete a questionnaire in English, and well enough to give consent to participate in the study (as decided by the senior midwife on the postnatal ward). We aimed to receive responses from about 288 women having a CS. This would provide a true population proportion of 60% (to within 5%) of women stating they had a say in the decision. To obtain this sample, we allowed for a non-eligibility, non-response rate of about 25% and thus sampled from a consecutive population of 375 women. Questionnaire The questionnaire was developed on the basis of a review of published reports, a review of existing questionnaires, and interviews with women, obstetricians, midwives and perinatal epidemiologists. It consisted of a combination of questions with forced-choice responses (mainly presented as a complete statement with a five-point response scale ranging from "strongly agree" to "strongly disagree"), open-ended questions and questions on demographic characteristics. (The questionnaire is available from the authors.) Procedure Ethical approval was obtained from the Hospital Ethics Committee, and, with the Committee's permission, a member of the research team (A Y), not involved in providing care, approached women on the postnatal ward between the second and fourth day and sought written consent for participation in the study. Questionnaires were sent to the participating women's homes seven weeks after the birth, to give women time to recover and to minimise biases such as the "halo" effect and social desirability (ie, the effect on respondents of the intensity of labour; and their tendency soon after the event to be uncritical of healthcare providers, particularly if they think their comments can be attributed to them).12 Follow-up of non-respondents included the mailing of a second questionnaire and a telephone call. A summary of the results was sent to participating women at the conclusion of the study. Data analysis The data were analysed using SPSS for Windows13 and Epi Info 6.14 We assessed whether variables such as age, language spoken at home, age left school, type of care, and type of CS distinguished between those who reported involvement in the decision and those who reported no involvement. Categorical data were analysed by χ2 tests. Point estimates and odds ratios are presented with 95% confidence intervals (CI). Results Sample Our sample consisted of 375 women having a CS over a six-month period. Of these, 11 (2.9%) women were not eligible, and 16 (4.3%) were "missed" by the researcher (mainly because they were discharged before contact). Thus, there was a defined sample of 364 women (taking the conservative view that all of the 16 missed women were in fact eligible and thus could be included in the sample). Completed questionnaires were obtained from 278 women (76.4% of our defined sample). The sample included women from a range of sociodemographic backgrounds receiving a diversity of care, including private obstetric care, hospital clinic care and different models of publicly funded midwifery care. About a third of the sample had an elective CS. Women's involvement in decision to have a caesarean section 171 women (61.5% of the study group; 95% CI, 55.8%-67.2%) reported that they were involved in the decision to have a CS. 81.4% (70/86) of those having an elective CS reported involvement in the decision, compared with 53.2% (100/188) of those having an emergency CS (odds ratio [OR] = 3.85; 95% CI, 2.01-7.47). Women cared for by a private obstetrician were less likely to report involvement in the decision (51.9%; 40/77) compared with women receiving other models of care (67.0%; 120/179) (OR, 0.53; 95% CI, 0.30-0.95). Reasons for the decision to have a caesarean section The 171 women who reported involvement in the decision were asked an open-ended question: "What led you to make the decision to have a CS?". A content analysis of the 164 responses to this question indicated that women framed their responses in terms of medical risks and benefits and not in terms of non-clinical personal issues. The questions with forced-choice responses gave women the opportunity to reveal that other factors were also important (Table 1). All women were very likely to have been influenced in their decision by information from their doctor. Women who had an elective CS were influenced by factors such as their recovery and the ability to plan. In contrast, women who had an emergency CS were influenced by the physical stress of labour ("I just couldn't go on any longer"), as well their partner's reaction in the labour ward. Other issues which distinguished the two groups were considerations about pain and previous negative experiences of childbirth: and in each of these about twice as many women with an elective CS agreed or strongly agreed that these issues had influenced their decision. In addition, about four times as many women with an elective CS reported that they had been influenced by family and friends during their pregnancy. Rejecting alternative options to caesarean section We examined women's responses to: Vaginal delivery after previous CS (women who had had one previous CS) Fifty of 209 women (23.9%) for whom these data were available reported one previous CS; 17 of these women (34.0%; 95% CI, 21.2%-48.8%) reported that their doctor talked to them about the possibility of having a vaginal delivery, but they did not subsequently try to have the baby vaginally. Vaginal breech delivery Of the total sample, 62 women (22.3%) reported that they had a breech presentation, and were asked "Did the doctor suggest that it would be possible to have the baby vaginally even though it was positioned bottom first?". In 14 of 37 women (37.8%; 95% CI, 22.5%-55.2%) with whom the doctor had discussed this option, the women reported "I decided against it". External cephalic version The women with a breech presentation were also asked "Did the doctor talk to you about the possibility of turning your baby while it was still in the womb?". In 12 of 39 women (30.8%; 95% CI, 17.0%-47.6%) with whom the doctor had discussed this option, the woman reported "I decided against it". Reporting preference for caesarean section "I insisted on a CS" Women having an emergency CS were less likely to agree with this statement. Demographic factors did not affect the response. Agreement: 27.9% of 269 women (95% CI, 22.5%-33.2%) (including 13.8% who strongly agreed); 18.8% of 181 women having emergency CS v. 46.4% of 84 women having elective CS (OR, 0.27; 95% CI, 0.15-0.49). "I told the staff at the very start that I was keen to have a CS" Women having an emergency CS were less likely to agree with this statement, and the only demographic factor affecting the response was educational level, with women in an intermediate category for education being more likely to agree. Agreement: 21.3% of 268 women (95% CI, 16.4%-26.2%) (including 11.6% who strongly agreed); 13.3% of 181 women having an emergency CS v. 38.5% of 83 women having an elective CS (OR, 0.24; 95% CI, 0.13-0.47), and 29.2% of 106 women in an intermediate education category v. 16% of 159 women in lower and higher education categories (χ2 = 6.31, df = 2, P = 0.04). "At the beginning of my pregnancy, I really wanted to have this baby vaginally" Agreement was not affected by demographic factors, but fewer women attending a private obstetrician agreed (non-significant difference), and fewer women having an elective CS agreed. Agreement: 64.6% of 274 women (95% CI, 58.9%-70.3%) (agreed or strongly agreed); 57.3% of 75 women in private obstetric care v. 68.0% of 178 women in other care (OR, 0.63; 95% CI, 0.35-1.15), and 52.4% of 84 women having elective CS v. 71.0% of 186 women having emergency CS (OR, 0.45; 95% CI, 0.26-0.79). Satisfaction Interpretation of the results for satisfaction is based on the assumption that women who answered anything other than "strongly agree" to positively worded items were not entirely satisfied or may have experienced problems with their care. This approach has been recommended in previous research15 and has been applied to other Australian studies examining satisfaction in childbirth.16 An appreciable number of women were only able to "agree" to such items or were "not sure" about their care (Table 2). For example, while half the women were satisfied with the decision to have a CS (as judged by indicating "strongly agree"), a further 40.9% only "agreed" and 4.7% were "not sure". Similarly, about a third and a half of women, respectively, were unable to "strongly agree" that they were "confident in the final decision" and "believe that caesarean section was the only alternative". More than two-thirds of women were unable to "strongly agree" that they had been "given good information to prepare for the possibility of a CS". Using the related assumption that we should pay attention to any level of affirmative responses (ie, "strongly agree", "agree", or "not sure") to negatively worded items, it can be seen that about 20% of women reported that they "needed more information on other options". Similarly, between about one in 10 and one in four women expressed some degree of dissatisfaction with the decision-making process. Discussion Over a third of the women in our study felt that they were not involved in the decision to have a CS, and an appreciable proportion expressed some degree of dissatisfaction with the decision, or may not have been given sufficient information. The strengths of our study include the good response rate and the fact that we used a hospital-based sample of women, including those with private health insurance. This is an important consideration given that about one-third of childbearing women are privately insured.10 The study also avoided some of the pitfalls of recently published research which relied on women giving feedback to the clinicians involved in their care.17 A shortcoming of our study was that it was conducted in only one hospital and may not be representative of women attending other Australian centres. For example, the average age of women in our study was 30 years, compared with a mean age for childbearing women in Australia of 28.6 years.10 The broader implications of the findings need to be considered, and should be the subject of further research. Clearly, there would be public health benefits in increasing the proportion of women who feel that they have been involved in the decision to have a CS, to avoid the possibility of psychological sequelae.18 While this may not be possible for the 50% of women who felt uninvolved in the decision to have an emergency CS, there may be scope for addressing the one in five women who felt uninvolved in the decision to have an elective CS. There are, of course, some absolute indications for CS (eg, major placenta praevia, massive placental abruption where the baby is still alive, transverse lie with shoulder presentation, and cord prolapse before full dilatation), and alternatives in these instances would not be discussed. These defined reasons may comprise up to 5%-8% of all births,19 and may account for a proportion of those who felt uninvolved in the decision-making process. Our study findings suggest that an informational package would be worth testing in a randomised controlled trial. This package should be broad based, rather than targeted to specific sociodemographic groups. In addition, it should be aimed not only at women, but also their partners, and families and friends. The package, which would include videos, posters and pamphlets, should address issues such as recovery after a CS and the risks and benefits of alternatives to CS. Evaluation of outcomes could be stratified for type of CS (elective or emergency), as it is possible that education would have a more substantial impact on elective CS rates, which appear to be influenced by non-clinical issues outside the labour ward experience. Any such intervention should aim to provide women with balanced information for making a truly informed choice. It is imperative that health messages are not framed in a way that makes women feel inadequate, or that they have failed in some aspect of their pregnancy. To this end, any evaluation of interventions should include outcome data examining not only intervention rates and associated morbidity, but also looking at psychosocial outcomes, such as maternal well-being and satisfaction. The need for information is well recognised in countries such as Britain, where there has been a major drive to develop evidence-based information pamphlets for pregnant women on issues such as ultrasound scans.20 This is not to suggest that information alone will address the high rates of CS,21 which relate to a multiplicity of factors. However, this strategy may help to create a different clinical climate and would at least partially meet the needs of the almost one in five women who agreed that they needed (or were unsure whether they needed) more information on other options. Acknowledgements We wish to thank the women who participated in the study. We would also like to thank the obstetricians and the postnatal ward midwives of the Women's and Children's Hospital for their support. This study was funded by a grant from the Women's and Children's Hospital Foundation and was supported by the Department of Public Health, University of Adelaide. Dr Yaser's position was funded by the Commonwealth Government Jobskills Participation Scheme. References Commonwealth Department of Health, Housing and Community Services. Goals and targets for Australia's health in the year 2000 and beyond. Canberra: AGPS, 1993. National Health and Medical Research Council. Options for effective care in childbirth. Canberra: AGPS, 1996. What is the right number of caesarean sections [editorial]? Lancet 1997; 349: 815. Wilkinson C, McIlwaine G, Boulton-Jones C, Cole S. Is a rising caesarean section rate inevitable? Br J Obstet Gynaecol 1998; 105: 45-52. Molloy D, Richardson P. Caesarean section -- public versus private. Why the differential? A reply to "Obstetric intervention and the economic imperative". Br J Obstet Gynaecol 1993; 101: 88-90. Spurrett B, Cook CM. Why we choose caesarean section: a prospective study. Aust N Z J Obstet Gynaecol 1997; 37: 297-300. Controversies in management. Should doctors perform an elective caesarean on request? BMJ 1998; 317: 462-465. Shepherd McCC. Patent decision making: the case of delivery method after a previous caesarean section. Culture Med Soc 1987; 11: 495-508. Ryding EL. Investigation of 33 women who demand a caesarean section for personal reasons. Acta Obstet Gynaecol Scand 1993; 72: 280-285. Day P, Sullivan EA, Lancaster P. Australia's mothers and babies 1996. Sydney: Australian Institute of Health and Welfare National Perinatal Statistics Unit, 1999. (Perinatal Statistics Series No. 7.) Computerised Maternity Database. Adelaide: Women's and Children's Hospital, Clinical Information Services Database, 1998. Lumley J. Assessing satisfaction with childbirth. Birth 1985; 12 (3): 141-145. SPSS (Statistical package for the social sciences) [computer program], standard version. Chicago, Ill: SPSS Inc, 1997. Epi Info (Word processing, database and statistical program for public health) [computer program], version 6.03. Atlanta, Ga: Centers for Disease Control and Prevention, 1996. Carey RG, Posavac EJ. Using patient information to identify areas for service improvement. Health Care Manage Rev 1982; 7(2): 43-48. Brown S, Lumley J. Satisfaction with care in labour and birth. A survey of 790 Australian women. Birth 1994; 21(1): 4-13. Mould TA, Chong S, Spencer JAD, Gallivan S. Women's involvement with the decision preceding their caesarean section and their degree of satisfaction. Br J Obstet Gynaecol 1996; 103: 1074-1077. Astbury J, Brown S, Lumley J, Small R. Birth events, birth experiences and social differences in postnatal depression. Aust J Public Health 1994; 18: 176-184. Francome C, Savage W. Caesarean section in Britain and the United States -- 12% or 24%: is either the right rate? Soc Sci Med 1993; 37: 1199-218. Oliver S, Rajan L, Turner H, et al. Informed choice for users of health services: views of ultrasonography leaflets on women in early pregnancy, midwives, and ultrasonographers. BMJ 1996; 313: 1251-1253. Fraser W, Maunsell E, Hodnett E, Moutquin J. Randomised controlled trial of a prenatal vaginal birth after cesarean education and support programme. Am J Obstet Gynecol 1997; 176: 419-425. (Received 21 Sep 1998, accepted 30 Apr 1999) Authors' details University of Adelaide, Adelaide, SA. Deborah A Turnbull, MPsych(Clin), PhD, Senior Lecturer in Public Health (Epidemiology), Department of General Practice; Anisa Yaser, MB BS, Research Officer, Department of Public Health; Vanessa Carty, MPsych, Research Student, Department of Public Health; Jeffrey S Robinson, FRCOG, FRACOG, Professor, and Head, Department of Obstetrics and Gynaecology. Department of Perinatal Medicine, Women's and Children's Hospital, Adelaide, SA. Chris Wilkinson, MPH, FRACOG, Staff Specialist Obstetrician Gynaecologist. John M Svigos, FRCOG, FRACOG, Senior Visiting Medical Officer. Reprints will not be available from the authors. Correspondence: Dr D A Turnbull, Department of General Practice, University of Adelaide, SA 5005. Email: dturnbull@medicine.adelaide.edu.au 1: Reasons women give for deciding to have a caesarean section (CS)* Elective Emergency†OR (95% CI)Information from doctor 75.7% (53/70)77.4% (79/102)0.91 (0.42-1.98)Considerations about recovery60.0% (42/70)36.3% (37/102)2.64 (1.35-5.18)Partner's attitude in general44.3% (31/70)35.3% (36/102)1.46 (0.75-2.85)Couldn't go on any longer21.2% (14/66)44.5% (45/101)0.34 (0.15-0.72)Could plan what was going to happen38.6% (27/70)16.0% (16/100)3.30 (1.52-7.22)Considerations about pain30.4% (21/69)15.7% (16/102)2.35 (1.06-5.26)Previous pregnancy/labour awful26.5% (18/68) 12.0% (12/100)2.64 (1.10-6.41)Partner's reaction in the labour room8.8% (6/68)23.8% (24/101)0.31 (0.10-0.85)Influence of family/friends during pregnancy15.7% (11/70)3.9% (4/102)4.57 (1.27-20.39)Felt too old4.5% (3/67)2.0% (2/102)2.34 (0.26-28.63)Previous infertility4.3% (3/69)2.0% (2/101) 2.25 (0.25-27.48)Medical risks/benefits not that important21.4% (15/70)27.0% (27/100) 0.74 (0.34-1.61)*Missing data are excluded. †Some totals exceed 100 (= number of women with emergency CS who indicated that they were involved in the decision-making process), because two additional women answered some of these questions, but denied involvement in the decision. Back to text 2: Women's satisfaction with decision to have a caesarean section (CS)*StronglyNotStronglyItemagreeAgreesureDisagreedisagreeSatisfaction with the decision itselfSatisfied with the decision (n = 274)50.4%40.9%4.7%2.9%1.1%Confident in the final decision (n = 276)62.3%31.2%2.9%2.9%0.7%Believe that a CS was the only alternative (n = 276)53.3%26.8%12.3%5.4%2.2%Now feel a bit cheated (n = 274)5.1%10.9%9.1%28.5%46.4%Believe that CS may not have been necessary (n = 275)2.2%2.5%14.2%31.3%49.8%Satisfaction with information provisionGiven good information about why CS was necessary (n = 275)58.2%33.1%4.7%3.3%0.7%Needed more information on otheroptions (n = 272)2.9%4.4%11.8%48.5%32.4%Given good information to prepare for possibility of CS (n = 274)28.8%40.1%10.2%12.8%8.0%Satisfaction with decision-making processFelt pressured to try to have the baby vaginally (n = 272)4.0%7.4%5.1%34.9%48.5%Unhappy about the amount of say in the decision (n = 275)5.5%6.5%5.8%45.1%37.1%Took too long to make decision (n = 274)7.7%9.9%8.4%38.7%35.4%Felt pressured by staff to have a CS (n = 272)1.8%3.3%3.3%36.8%54.8%* Missing data are excluded. Back to text Reader response to: Women's role and satisfaction in the decision to have a caesarean section I commend the authors for this paper. However I wonder if the contention that unless the respondents "strongly agree" or "strongly disagree", the response is mixed is debatable. Patient satisfaction is multidimensional and to focus on patient's response to assess whether for example the information given has been adequate may be unnecessarily harsh on the care givers. Almost all major decisions are accompanied by a degree of regret and doubt by a proportion of people. To infer, unless the patient is entirely satisfied with something, that the care given was somehow less than satisfactory is to demand too much of a complex human relationship, that of a technically dependent patient and a care giver. I note that only 61.5% felt that they were involved in the decision to have a caesarean section, and only 81.4% in the elective cases where presumably there was ample time to ask for further information. I presume that they had in fact legally consented to the decision. What would have been interesting is a personality study on all the respondents. It may be that information are not the issue but the inherent psychological characteristics of the study subjects. Information packs may be useful but the decision to consent to a caesarean section rests with the woman alone. Packs aimed at her partner, family and friends may do more harm than good where there are conflicting opinions. One only has to look at the diverse response in this study itself to confidently predict that there will be such conflict amongst any group and an already potentially emotional decision may be further complicated. Tony Chung Associate Professor Department of Obstetrics & Gynaecology The Prince of Wales Hospital Shatin, NT Hong Kong SAR, China Submitted by email 24/6/99, posted online with author response 28/6/99. Reply by the authors We would like to thank Dr Chung for his thoughtful reply to our paper. The use of 'strongly agree' and 'strongly disagree' as markers of satisfaction has a precedence in the literature on satisfaction with hospital care.1 Importantly, it has been used in relation to maternity service provision.2 Although this approach may seem unnecessarily critical, it avoids over-simplistic interpretations, as demonstrated in a British report into this issue which concluded (after using disputed methodology) that attempts to reduce caeasrean section rates may be futile, because of women's preferences.3-5 Dr Chung's second point relates to the issue of legal consent. In contrast, our paper examines participation in decision making, for which the signing of informed consent is only one part of a broader process. The paper does not intend to infer that the requirements for informed consent for a procedure have been neglected. The point about measuring women's personalities is an interesting one. There is research which finds increased psychological morbidity in women demanding caesarean section in the absolute absence of clinical indications.6 In contrast to this somewhat rare individual,6 our study examines a cross-section representing about one quarter of the women at the study hospital. Dr Chung's point implies that the problem rests with these women. This seems an unreasonable assumption to make of such a large proportion of childbearing women. It is imperative that we avoid 'blaming' the women. Finally Dr Chung is concerned that the provision of information to the broader community may lead to conflict. Our research suggests that there is already an involvement of family and friends in the decision making process. It is for this very reason that we hypothesize that providing evidenced based information may lead to a more beneficial outcome. To this end any randomized controlled trial evaluating such a strategy should include not only clinical outcomes but also psychosocial variables such as anxiety, feelings of failure and reassurance. Deborah Turnbull Chris Wilkinson Submitted by email 28/6/99, posted online 28/6/99. 1. Carey RG, Posavac EJ. Using patient information to identify areas for service improvement. Health Care Manage Rev 1982; 7(2): 43-48. 2. Brown S, Lumley J. Satisfaction with care in labour and birth. A survey of 790 Australian women. Birth 1994; 21(1): 4-13. 3. Mould TA, Chong S, Spencer JAD, Gallivan S. Women's involvement with the decision preceding their caesarean section and their degree of involvement. Br J Obstet Gynaecol 1996; 103: 1074-1077. 4. Grant JM, Women are satisfied with caesarean section [editorial; comment]. Br J Obstet Gynaecol 1996; 103 (11): 7-8. 5. Hemminki E. Cesarean Sections: Women's choice at giving birth? Birth 1997; 24: 124-125. 6. Ryding EL. Investigation of 33 women who demanded a cesarean section for personal reasons. Acta Obstet Gynecol Scand 1993; 72: 280-285. Back to top of article Back to reader response

Deborah A Turnbull · Chris Wilkinson · Anisa Yaser · Vanessa Carty · John M Svigos · Jeffrey S Robinson

Medicine and the Community Patients' complaints about medical practice Ann E Daniel, Raymond J Burn and Stefan Horarik MJA 1999; 170: 598-602 For editorial comment, see "Nisselle" Abstract - Introduction - Methods - Discussion - Acknowledgements - References - Authors' details - - More articles on Law Abstract Objectives: To survey complainants' experience and the outcome of lodging a complaint about medical treatment. Design and setting: Random sample survey. A 32-item questionnaire was sent to 500 complainants by the New South Wales Health Care Complaints Commission (HCCC), and responses were returned reply-paid to the university. Participants: 290 people with complaints finalised by the HCCC between February 1996 and August 1997. Outcome measures: Profile of complainants and doctor involved; type and place of incident; complainants' emotions at the time of the incident and at the conclusion of the complaints process; outcome of complaint, and satisfaction with outcome and intention to take further action. Results: After excluding non-medical complaints, 290 of 314 questionnaires returned were analysed, giving a response rate of 63% (314/500): 64% of complaints were about clinical care, and the remainder related to rudeness or poor communication (22%), and unethical or improper behaviour (14%); 70% of complainants were women, and 44% of complaints were on behalf of another person; Complainants had a high socioeconomic status, and 60% were currently in paid employment; More than half the incidents occurred in doctors' consulting rooms; 87% of the doctors involved were men, and over half were general practitioners. 37% of complaints were dismissed; 21% of complainants did not know the outcome of their complaint, and 40% believed that the doctor had been disciplined. Most complainants were dissatisfied with the outcome; a quarter stated that they would sue, but 70% would do nothing further. All but two complainants would never consult the doctor involved again. Conclusions: Most of the respondents were not satisfied with either the process or the outcome. Typically they wanted stronger measures taken. Only a few wanted compensation; more wanted acknowledgement of harm done; and most wanted the doctor punished. Introduction Patients may make a formal complaint if they believe that good medical practice has failed them. The implications of these complaints for the medical profession in the United Kingdom, the United States and Australia have been assessed recently.1-5Although the medical profession has been assiduous in self-regulation, governments in many countries have responded to well publicised concerns about the efficacy of professional self-regulation by establishing complaints handling bodies. For example, in New South Wales, the highly public failure of the healthcare system exposed by the Royal Commission into deaths and injuries as a result of psychiatric treatment at the Chelmsford Private Psychiatric Hospital6 prompted the NSW Government to establish a Health Care Complaints Commission (see Box 1). In Australia, these units have been developed under the auspices of State health departments, and in some States have been accorded statutory independence. The impact of complaints on doctors has been studied;9,10 less researched are patients' perspectives. One study of litigants11 explored the views of patients suing in 227 medical negligence cases. Focusing on standards of care, the authors argued against proposals for no-fault compensation and concluded that, while litigation may provide compensation and possibly some explanation, it does not address litigants' concerns about standards of care and accountability.11 Our study takes up such concerns about care, competence and responsibility as voiced by patients who bring a formal complaint, but usually do not become litigants -- a somewhat different population, but one which is likewise disgruntled and distressed about a medical incident. We examined the experience of healthcare complainants, and their satisfaction (or otherwise) with the process and outcome of bringing a formal complaint. Methods We surveyed people whose complaints were finalised by the NSW Health Care Complaints Commission (HCCC) during the 18 months February 1996 to August 1997. The HCCC agreed to address our survey package to complainants at the time of closing each file. This ensured that complainants' privacy was maintained, and that respondents answered questions about a process, often lengthy, which had just concluded. Questionnaire The 32-item questionnaire asked for a description of the incident leading to the complaint; where the incident occurred; the specialty, sex and approximate age of the practitioner; demographic details of the complainant (who was not necessarily the patient); feelings of the complainant at the time of the incident, at the time of making the complaint and subsequently; their expectations of the outcome; and whether they intended to take the matter further. The survey instrument was piloted and revised. The survey packages, 500 in total, were mailed intermittently from the HCCC office, a procedure which gave us only remote control over the distribution. Statistical analysis SPSS software was used for the analysis.12 The results are given as the percentage of respondents answering particular questions, and Pearson's χ2 tests of independence were used to determine the significance of the association among reported (dis)satisfaction, nature of the incident, demographic characteristics of complainants and practitioners, respondents' expectations and the outcome of the complaints. Ethical approval The Ethics Committee of the Health Care Complaints Commission requested some minor changes to the questionnaire and then approved the study in July 1995. At that time, there was no requirement for ethical approval for such surveys by the University of New South Wales. The Results of the analysis of the survey are shown in Box 2. Discussion Patients who make formal complaint continue to view very seriously the incident which prompted the complaint. They recall vividly their negative emotions about the incident, although at the time most were glad of the opportunity and satisfied with the procedures for lodging a complaint. Their dissatisfaction mounts, as finalisation of complaints typically takes many months, even years, and by the time of our survey, when the file was closed, most were dissatisfied with the process and the outcome of making a complaint. Almost a third of the respondents declared that they would take the matter further: 26% intended to sue, and 4% would inform police, and appeal to the Minister for Health. Despite the common view that most people who file a complaint simply want an apology or acknowledgement of harm,15 such a response would have satisfied only 16% of complainants. Complainants' expectations seem to be at odds with the role of the HCCC and cannot be met by its statutory functions. Its role is protection of the public, not punishment or restitution. That only five respondents' complaints (1.7%) had been successfully conciliated is surprising given the Commission's vigorous commitment to this course of action. The 1996-97 HCCC report records successful conciliation in 50 of the 82 complaints in which this was attempted, and, in 1997-98, 74 complaints were resolved through conciliation and a further 278 by "direct resolution". These latter had been judged as important but to "not warrant investigation or conciliation".16 The complaints of our five respondents which had been settled by conciliation involved poor communication on part of a specialist (3 cases) and refusal to attend by general practitioner (2 cases). Two were satisfied, and three were dissatisfied, with the process. The numbers were too small for further analysis. Our respondents were better educated and of a higher occupational status than is typical of the population as a whole, perhaps because people of higher occupational status are more likely to respond to surveys. However, we found no significant association between employment status, sex, age or occupation of respondents and their report of dissatisfaction/satisfaction, expectations of the outcome, and intention to pursue the matter in the courts. The one pointer to intention to sue was the nature of the event. Complaints about clinical incidents are not more likely than those involving communication or personal ethics to bring disciplinary action, but they are significantly more likely to lead to litigation. The health consumer's disappointment, anger or outrage over inadequacy, incompetence or failed ethics on the part of health practitioners can find voice through the powers of complaints units such as the NSW HCCC. Its powers of investigation, referral, prosecution, conciliation, and accountability to Parliament protect the public and monitor health service standards. Perhaps the increase in complaints about health services signals a rising consumerism and disenchantment with professions generally. Robert Hughes' diagnosis of "a culture of complaint" that engulfs daily life is widely accepted.17 The known availability of effective complaints mechanisms certainly gives legitimate outlet for discontentment. Our survey indicates that people are aware of their rights as consumers and are glad to have ready access to avenues of complaint. They felt that initiating the complaint was the right thing to do, but they were often disappointed with the outcome, because their expectations were at variance with what does, or indeed can, ensue. Knowing more about what people see as a breakdown in one or other of the many facets of good medical practice, and understanding what they expect, as well as what they can feasibly and legitimately expect by way of resolution, may obviate some of the difficulties and disappointments revealed by our survey. Acknowledgements Our thanks to our UNSW colleague, Ms Frances Lovejoy, who advised on statistical analysis. The authors are grateful to the NSW Health Care Complaints Commission for facilitating the survey. This study is part of a larger project on the regulation of professions funded by a grant from the Australian Research Council. References Rosenthal M. The incompetent doctor: behind closed doors. Buckingham, Philadelphia: Open University Press, 1995. Vincent CA, Ennis J, Audley RJ, editors. Medical accidents. Oxford: Oxford University Press, 1993. Ingram K, Roy L. Complaints against psychiatrists: a five year study. Psychiatric Bull 1995; 19: 620-622. Nettleon S, Harding G. Protesting patients: a study of complaints submitted to a family health service authority. Sociol Health Illness 1995; 16 (1) 38-61. The Tito Report. Review of professional indemnity arrangements for health care professionals. Compensation and professional indemnity in health care. Final Report. Canberra: AGPS, 1995. New South Wales. Report of the Royal Commission into Deep Sleep Therapy. The Honourable Acting Justice J P Slattery. Sydney: The Commission, 17 December 1990. Workforce Planning Unit, NSW Health Department. Medical Labour Force Annual Survey New South Wales, 1997. Health Care Complaints Commission. Annual Report 1996/97: 39, 44, 44-45, 11. Marjoribanks T, Delrecchio, Good MJ, et al. Physicians' discourses on malpractice and meaning of medical malpractice. J Health Social Behav 1996; 37: 163-178. Mulcahy L. From fear to fraternity: doctors' construction of accounts of complaints. J Social Welfare Fam Law 1996; 18 (4): 397-412. Vincent C, Young M, Phillips A. Why do people sue doctors? A study of patients and relatives taking legal action. Lancet 1994; 343: 1609-1613. SPSS (Statistical Package for the Social Sciences) [computer program], version 4. Chicago, Ill: SPSS Inc, 1990. Australian Bureau of Statistics. Educational attainment in 1997. Canberra: ABS, 1998. (Catalogue No. 4224.0.) Daniel A. Power, privilege and prestige: occupations in Australia. Melbourne: Longman Cheshire, 1983. Simanowitz A. Standards, attitudes and accountability in the medical profession. Lancet 1985; 2: 546. Health Care Complaints Commission: 1997-98. Annual Report. Sydney: HCCC, 1998: 42-43. Hughes R. Culture of complaint: the fraying of America. New York: Oxford University Press, 1993. (Received 24 Sep 1998, accepted 14 Apr,1999) Authors' details School of Sociology, University of New South Wales, Sydney, NSW. Ann E Daniel, PhD, BA, Professor of Sociology. Raymond J Burn, BE, MB BS, LLB, General Practitioner. Stefan Horarik, BE, MEngSc, BA, Research Assistant. Reprints will not be available from the authors. Correspondence: Professor A Daniel, School of Sociology, University of New South Wales, NSW 2052. Email: a.daniel@unsw.edu.au 1: The New South Wales Health Care Complaints Commission The NSW Health Care Complaints Commission (HCCC) was established in 1994. Its role is to protect the public against incompetent or irresponsible health practitioners, and its work involves monitoring professional standards, advising and conciliating, or invoking sanctions when standards are flouted. The Commission was established and its powers defined by the Health Care Complaints Act 1993 (NSW). It is required to inform the Medical Board of complaints and of how it intends to proceed. Complaints may be prosecuted before the Medical Tribunal or the Professional Standards Committee, two statutory authorities established under the Medical Practice Act 1992 (NSW). That Act defined the powers of the Medical Board and the two separately constituted disciplinary bodies. The HCCC determines how complaints are to be handled. Complaints may be brought before the statutory Medical Tribunal and Professional Standards Board, but it is not legislatively authorised to be punitive or restitutive of damages. Complainants seeking damages or punishment must approach the Courts. The Annual Report of the HCCC details the frequencies of each complaint category and of each category of health professional involved. In the past five years complaints about doctors have remained fairly static -- from 971 in 1992-93 to 803 in 1996-97 and 984 in 1997-98. In that period 23 023 medical practitioners7 were registered in New South Wales and the number practising is estimated to be 18 200 (79% of all registrants), suggesting that one doctor in 20 may be the subject of complaint in any one year. Thus, very few services prompt a formal complaint. Nonetheless, although most are dismissed, patients' complaints trigger a disturbing and disruptive experience for the practitioner and diminish the profession's reputation. The HCCC Report for 1996-97 describes the outcome of all complaints. Some breakdown of completed investigations involving doctors is possible:8 52% of complaints were about doctors; 14% involved other health practitioners; 34% hospitals and other health facilities. The Report does not provide comparable data for the 712 complaints finalised, but it might be assumed that these proportions apply to cases completed in 1996-97. On this basis, 370 investigations specific to doctors were completed in 1996-97.8 Of these the HCCC referred 74 (20% of all medical complaints concluded) to the Medical Board requiring that the practitioner be counselled; it brought 41 (11%) medical matters to the Medical Professional Standards Committee for hearing; and it prosecuted six complaints (< 2%) before the Medical Tribunal. The remaining 249 (67%) medical practice investigations were dismissed, conciliated, or terminated.8 Back to text2: ResultsCharacteristics of complainants Of the 500 questionnaires, 66 were returned unopened (address not known), leaving 434; responses were received from 314 complainants, giving a response rate of 63% (314/500). Twenty-four forms describing complaints about non-medical health practitioners were discarded, leaving 290 questionnaires for the analysis. The complainants ranged in age from early 20s to over 70 years; the median category was the 30-39 year olds; 153 respondents (54%) were in their 30s or 40s. 70% of complainants were women. The respondents were well educated: 85% had completed high school, 26% had a university degree and 34% held an occupational certificate or diploma. This profile is significantly different from that for all Australians of workforce age in 1997 (58% had completed high school; 14% had a university degree; and 26% held an occupational certificate or diploma13) (P < 0.001, df = 2) Sixty per cent were in paid employment. Their higher than average socioeconomic status is reflected in their occupational distribution (according to the Daniel Scale of Occupational Prestige).14 Very few respondents identified as Aboriginal (5; 1.7%) and only 13 (4.5%) reported speaking a language other than English at home. Almost half of all complaints (128; 44%) were brought on behalf of someone else. Of these, 42 concerned the complainant's child or ward; 31 complaints were on behalf of a spouse or partner; 43 for a parent or other relative; and in 12 cases a complaint was brought by another practitioner. In the remaining 162 cases (56%) patients complained on their own behalf. Very few respondents (10; 3.4%) had ever complained formally about a medical practitioner before this occasion. Incidents prompting a complaint Respondents described the treatment or behaviour which led to a formal complaint. The incident was classified under one or, if necessary, two categories (eg, complainants might say the doctor failed to diagnosis their illness and was also rude to them.) Most complaints (64%) were about clinical care, with incompetence/ negligence being the most frequent. This agrees with HCCC statistics for 1996-97, with clinical care complaints making up 61% of the total.11The next most frequent complaints involved failure of communication and lack of courtesy. The comparative HCCC figure is 13%. More than half the incidents occurred in doctors' consulting rooms, more than half the doctors involved were general practitioners, and 87% were men. Emotions triggered by the incident of complaintRespondents wrote passionately of their emotional responses to the incident. The questionnaire listed 12 possible emotional responses, with the opportunity to add to the list. The percentage of all respondents recalling each emotion is shown in the Box. In recalling the incident complainants described a mean of 4.1 emotional responses each. The most frequent were anger, shock, and a sense of betrayal. At the beginning of the complaints process two-thirds (63%) of the 290 respondents had felt satisfied that they had done the right thing; some recalled being worried (19%), confused (10%), or cynical and angry (8%) about the process itself. By the time the complaint file was closed (the median time to finalise a complaint was 18 months, range one month to 6 years), initial satisfaction had faded, and the majority (61%) were dissatisfied; 23% remained satisfied and 16% were unsure about their feelings. Outcome of complaintsOver a third of complaints were dismissed; in 40% the doctor had been disciplined, and the result was not known in 21%. After excluding complaints with outcome unknown, there was no significant association between category of complaint as described by respondents and the outcome; nor was there any significant association between demographic characteristics of respondents and outcome or respondents' intentions to take further action. Heightened levels of dissatisfaction at the conclusion of the process were significantly associated with the outcome (P = 0.001; χ2 = 70.02, df = 8). Satisfaction was much more likely if strong action had been taken against the doctor. With disciplinary measures or counselling of the doctor, 42% of complainants were satisfied, 43% dissatisfied and 15% undecided. With complaint dismissal, 6% were satisfied, 90% dissatisfied and 4% undecided. Further action and outcomes complainants wantedAsked whether they were contemplating further action, 70% said no; 26.2% declared they would sue in the civil courts; and 4% would inform police, appeal to the Minister of Health or publicise their complaint. The intention to take the matter further was not related to respondents' sex, age, education or occupation. Respondents were much more likely to take further action (usually litigation) when the complaint involved clinical issues. Complaints about practitioners' rude or inadequate communication or personal ethics were significantly less likely to lead to intention to sue (P < 0.001; χ2 = 10.03, df = 2). At closure of their complaint file, many respondents remained angry and most wanted stern measures taken. All but two people would never consult the doctor involved again. Back to text

Ann E Daniel · Raymond J Burn · Stefan Horarik