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Diane Reeves, honorary clinical senior lecturer Dept of General Practice, University of Birmingham, B17 0SN, UK
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This paper highlights the fact that information provision is only one of the necessary conditions, and not a sufficient condition, for informed choice to be realised in the context of healthcare. Competence (of patients to understand choices) voluntariness (freedom from constraints and coercion)and decisionmaking (making an actual choice) are also necessary. Most antenatal patients are obviously competent, but in the context of pregnancy care in the UK it is doubtful whether any decision is voluntary given the attitudes and behaviour of some staff described in this study. In addition, patients are often not expected to make any decisions, but as highlighted in this paper, are simply expected to comply with the policy of the obstetric unit whatever that might be. It is not suprising therefore that Stapleton et al found their leaflet made little difference to the percentages of women reporting they made informed choices. |
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Anna E Livingstone, general practitioner The Limehouse Practice Gill Street Health Centre E14 8HQ, -
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Dear Editor I welcome the papers on evidence based leaflets in maternity care (1,2), really because of the way raise issues of pregnant women’s involvement in obstetric decision making which affects their outcome, and their origin primarily from midwifery departments. A great deal of antenatal care in most areas takes place in the community, and it is there that close links between the women, their midwives and their longer term health care professionals general practitioners (GPs) and often health visitors are made. Midwives and general practitioners vary in their interpretation of evidence about intervention in health care, but both through their clinical role in the community are more likely to interpret them with an emphasis on the normal than the specialist obstetrician. Unfortunately the articles did not discuss the roles or perceptions of GPs and might reinforce prejudices among other health professionals through generically labelling obstetricians as doctors, rather than informing how we primary care doctors can develop our role in the primary care team involving midwives to be less directive and effectively support choice and safe non interventionist obstetrics where appropriate. It is clear leaflets alone don’t do the work. Yours sincerely, Anna Eleri Livingstone
1. Stapleton H Kirkham M Thomas G Qualitative study of evidence based leaflets in maternity care BMJ 2002 324 639-43 2. O’cathain A Walters SJ Nicholl JP Thomas KJ kirkham M Use of evidnce based leaflets to promote informed schoice in maternity care:randomised controlled trial in every day practice BMJ 2002 324 643-6 |
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Helen M Stapleton, research midwife University of Sheffield S3 7ND, Mavis Kirkham & Gwenan Thomas
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Dr Livingstone has raised a number of interesting points in response to our paper.1 Pressures of space meant that we were unable to describe differences in clinical practice between professional groups. We disagree with her assertion, however, that midwives and GPs are more likely than obstetricians to apply a ‘normalist’ interpretation to interventions in maternity care. Data from our research suggested that participants from all groups of health professionals (Midwives, GPs, Ultrasonographers, Anesthetists and Obstetricians) did not hold a unified undertanding of the word ‘normal’. 2 Furthermore, during interviews participants offered varied, and often conflicting, meanings for other terms which are widely used in contemporary maternity care including risk, informed choice and evidence-based care. With regard to GP participants in the study, the small number who were directly involved in delivering antenatal care appeared no more likely than other health professionals to offer women evidenced-based information nor to assist them in making informed choices. Sadly we collected data from a number of women who, despite a safe outcome, had been removed from their GP patient list on account of having persisted in their desire to give birth in their own homes. Finally, we did not intend to convey the impression that our research findings support the concept of ‘obstetric’ decision-making, or indeed privilege ‘non- interventionist obstetrics’ over other models of care. Our aim is to encourage health professionals involved in providing maternity care to engage in a model of decision-making which reflects all the available evidence and which respects the specific and individualized needs of childbearing women, their families and loved ones. 1 Stapleton H, Kikham M & Thomas G Qualitative study of evidence based leaflets in maternity care BMJ 2002 324 639- 2 Kirkham M and Stapleton H (eds) Informed choice in maternity care: an evaluation of evidence based leaflets. 2001 University of York: NHS Centre for Reviews and Dissemination |
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James B. Robins, Consultant Obstetrician & Gynaecologist Inverclyde Royal Hospital, Greenock, PA16 0XN
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Editor, Re: Compliant behaviour in the antenatal setting - Voluntariness and prenatal screening. In April 2001 the Public Health Minister, Yvette Cooper, announced that from 2004 every pregnant woman in the country would be offered serum screening for Down syndrome. Prenatal screening for Down syndrome has largely developed as a consequence of advances in technology and the presumption that the NHS would provide it as a health related service. Whether or not the NHS should fund the mandatory offering of a test, (or combination of tests), for this condition is questionable but not the main issue here. What is perhaps more worrying is a second presumption - the presumption of acceptance - an expectation of compliant behaviour. Prenatal screening for Down syndrome is unusual as a medical service in that’s its value does not lie in managing or curing illness but instead in simply producing information that generates difficult choices for the patient. The information required to make these decisions is complex and technical, contrasting relative risks and involving terms and ideas which are not part of the everyday experience of the woman. Despite an intended neutrality the very act of offering Down syndrome screening, (be it serum screening, nuchal translucency measurement or both), intrinsically puts forth the assertion that possession of this knowledge will be beneficial and empowering (1). In other words the potential damage of mandatory offering is that the process of making the offer of a test can appear to the mother to be compulsion. Women come to perceive screening for Down syndrome as an integral part of antenatal care and feel a responsibility to have it. It was therefore with some interest but little surprise that I read the related papers regarding informed choice in the maternity setting (2,3), in the BMJ this week. I would agree with the assertions made by the authors that in antenatal care we unintentionally promote ‘informed compliance’. It may be that a fully informed choice is not possible in the antenatal setting. An offer that is made under conditions that take advantage of a woman’s vulnerabilities, when she is hoping for good care and attention and does not want to be seen to disappoint her obstetrician, midwife or general practitioner, does not respect her voluntariness. The woman may fear covertly expressed suggestions of rejection by the professional staff when she wants to be seen to be doing the best for her baby. Her resistance is weakened by her desire for the complete antenatal care package, (which is after all almost entirely organized around the provision of prenatal screening tests – in itself a presumption of acceptance). Skrabanek(4), has suggested that screening can only be achieved through coercion and deception and that it is invariably an infringement of the patient’s personal liberty. Certainly in the antenatal setting issues of voluntariness and informational manipulation are raised. The decision as to whether or not to be screened should rest on knowledge of potential benefits but remain free from social pressures and coercions. The woman’s participation in the decision-making process and ultimate decision regarding the administration of a screening test must be voluntary yet how many simply acquiesce to meet the terms of the service provided? The comments of Lord Justice Scott in Bowater v Rowley Regis Corpn.(5) are relevant; “a (wo)man cannot be said to be truly ”willing” unless (s)he is in a position to choose freely, and freedom of choice predicates, not only full knowledge of the circumstances on which the exercise of choice is conditional, so that (s)he may be able to choose widely, but the absence of any feeling of constraint so that nothing shall interfere with the freedom of (her) will” When considering issues of consent for prenatal screening most concern themselves with adequacy of disclosure, the oft-(mis)quoted concept of ‘informed consent’. It is, however, increasingly clear that the real issue in this situation is whether or not the ‘informed’ choice is freely made. References 1. Hunt L. Routine Prenatal genetic screening in a Public Clinic: Informed choice or moral imperative? Medical Humanities Report 22(2) Fall 2000. www.bioethics.msu.edu/mhr/01w/prenatalscreening.htm 2. Stapleton H, Kirkham M & Thomas G. Qualitative study of evidence based leaflets in maternity care. BMJ 2002; 324:639-43. (16 March 2002) 3. O’Cathain A, Walters SJ, Nicholl JP, & Kirkham M. Use of evidence based leaflets to promote informed choice in maternity care: randomised controlled trial in everyday practice. BMJ 2002; 324:643-6. (16 March 2002) 4. Skrabanek P. Preventive Medicine & Morality. Lancet 1986; Jan 18: 143. 5. Bowater v Rowley Regis Corpn. [1944] KB 476 at 479 |
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Dr Barbara Vernon, President Maternity Coalition, Australia, Tracy Reibel, Sally Katherine Tracy
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Congratulations to the midwives from Sheffield (1,2) for demonstrating the excellent insight a qualitative study can provide when coupled with a more controlled empirical investigation. Both the studies and this weeks editorial (3), suggest that inequalities in power and status in the maternity services have a greater influence on what happens to women giving birth, than either their hopes and dreams, or the choices they may feel informed to make. These studies are a powerful reminder that the physiological birth process, without some degree of technological interference and tampering, is becoming a rare event, in danger of possibly becoming extinct. Midwives are also portrayed in this hierarchical system as having little effect on the outcome of care. The authors suggest that where women are able to form a trusting relationship with a midwife they get to know, they are more likely to ask questions, and feel they can make choices about their care, rather than simply being 'compliant'. As members of a national consumer movement in Australia, we feel it is a violation of human rights for women to continue to be subjected to routine hospital maternity care that is demonstrably not backed by research evidence on what is best for the majority of mothers and babies. Far from being an illness, childbirth is a healthy, normal and important event in women's lives. Women deserve to receive the model of care backed by research evidence - one on one care from a known competent midwife throughout pregnancy, birth and postnatally, with obstetric backup for the minority (10-15%) of women who may need it. And yet, for most of us now the opportunity to access this model of care is unavailable. We believe this madness must stop, and implore all women to seriously take heed of the options available to them and join with other women to call for reforms to the maternity services in their countries until all women have the choice of being cared for by their own midwife.In Australia we have proposed a National Maternity Action Plan www.communitymidwifery.iinet.net.au/nmap to inform governments and policy makers of the need for change. 1. O'Cathain, A, Walters, S J, Nicholl, J P, Thomas, K J, Kirkham, M (2002). Use of evidence based leaflets to promote informed choice in maternity care: randomised controlled trial in everyday practice. BMJ 324: 643-643 2. Stapleton, H., Kirkham, M., Thomas, G. (2002). Qualitative study of evidence based leaflets in maternity care. BMJ 324: 639-639 3. EDITOR'S CHOICE Informed compliance. BMJ 2002 324: 0. |
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George M. Morley, MB ChB FACOG, Retired obstetrician PO Box 181, Northport, MI 49670 USA, None
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Erasmus Darwin died 200 years ago this month; this is a quotation from his publication, Zoonomia: "Another thing very injurious to the child, is the tying and cutting of the navel string too soon which should always be left not only until the child has repeatedly breathed, but till all pulsations in the cord cease. As otherwise the child is much weaker than it ought to be, a portion of the blood being left in the placenta, which ought to have been in the child." Two hundred years later, NICU's are filled with anemic newborns, many of whom require blood transfusion to keep them alive. Nearly every preemie has its cord clamped immediately. The most common cause of neonatal morbidity is respiratory distress syndrome, known under the name of "shock lung" at any other age. A fuller account of the injuries alluded to by Erasmus is available at: www.cordclamping.com Erasmus Darwin's comment should be on every maternity informed consent form, and every midwife and obstetrician should know it by heart. G. M. Morley, M.B., Ch. B. |
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Andrew Herxheimer, Emeritus fellow, UK Cochrane Centre 9 Park Crescent, London N3 2NL
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The disappointing results in this qualitative study and the randomised trial should not be attributed only to the setting in which the leaflets were presented to the women and to the suboptimal opportunities they had to discuss the contents with professionals. It seems very likely that the design of the leaflets played a major part. To learn from the results of these important studies it is necessary to consider what they were like and the process by which they were designed and pilot-tested. The design process embraces not only writing the text, but also the physical presentation - including typography, layout, colour and illustration if any. May I therefore ask the Sheffield authors to give us these details,and tell us where the actual leaflets can be found? Information design is a professional skill that most health professionals don't yet recognise or understand. We must learn to use information designers. |
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Victoria A Carne, Head of Midwifery MIDIRS (Midwives Information & Resource Service, 9 Elmdale Road, Clifton, Bristol. BS8 1SL
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Dear Editor Within the context of information giving, the MIDIRS Informed Choice Initiative is widely recognised as innovative and groundbreaking. The initiative aims to assist women to exercise informed choice by producing summaries of the best available scientific evidence relating to discrete areas of clinical practice in both pregnancy and childbirth.The leaflets were designed by a graphic designer, were extensively piloted, were awarded a Crystal Mark for plain English and are widely used throughout healthcare Trusts in England. (The studies reported were carried out in Wales). The concept of informed choice although far from simple, is based on some fundamental values: a) Women have the right to information about their care and need to be involved in decisions about their own bodies b) Women are primary decision makers about what happens to them during pregnancy and birth Problems occur when there is a dearth of evidence on which to base choices, or when, as is arguably more commonplace, evidence does not match local policies or practice. Obstetricians continue to define the norms of clinical practice, in essence paying lip service to the concept of informed choice and limiting the choices available to women. This position if further strengthened by women's inherent trust in health professionals, which ensures conformity with professionally defined choices. The studies showed that staff sometimes expressed antipathy for an option covered by the leaflets to the extent that on some sites, women were denied access to particular titles.Indeed, out of the thousands of women involved in the study who could have received the ten leaflets, only 70% of women reported receiving one of them.It was similarly noted that midwives rarely discussed the contents of the leaflets or differentiated them from other pregnancy-related information. This further masked the true potential of Informed Choice leaflets in supporting informed decision-making. The progression and ethos of maternity services and the litigious nature of society has witnessed a divergence from acquiring client consent to a more complex notion of informed choice (1). Within this culture, the Informed Choice leaflets are unique because they are genuinely research based and do not present the opinion of an individual or unit policy.The leaflets do not seek to provide 'the answer' but they do present the facts about what we do and don't know. They empower consumers by providing women with high quality, succinct information with which to make informed choices and they support practitioners in maintaining their knowledge of the latest evidence base, thereby ensuring best practice. However, whilst the Informed Choice Initiative provides a portal to the evidence base, it should in no way detract from the onus placed on health professionals to open up discussion, guide, and offer non-directive support to women in making their own informed choices. These studies highlight the cultural context for the provision of this information and until this is challenged, the profession will continue to pay lip service to 'informed choice' whilst sustaining a culture of 'informed compliance'. Refs: 1. Kirkham M, Stapleton H eds. Informed choice in maternity care: an evaluation of evidence based leaflets. York: NHS Centre for Reviews and Dissemination, University of York, 2001. |
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Victoria A Carne, Head of Midwifery MIDIRS (Midwives Information & Resource Service) 9 Elmdale Road, Clifton, Bristol. BS8 1SL
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Dear Editor I would like to rectify a factual inaccuracy within MIDIRS' response ' Informed Choice or Informed Compliance?' Contrary to the inference made within the text, the entire study was not undertaken in Wales. Indeed, a significant part of this study was carried out in England. Sincere apologies for this inaccuracy and for any confusion incurred. |
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Helen Stapleton, research midwife Universty of Sheffield
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We are in complete agreement with the points raised by Andrew Herxheimer (1) regarding R&D processes involved in producing information leaflets for use by NHS service users and providers. I am confident, however that the leaflets we evaluated exceed both requirements and expectations over a range of quality assurance and design indicators. Sadly, as our research findings demonstrate, (2) despite using high quality information and employing information technologists and graphic designers in the production of these leaflets, they proved insufficient to challenge the organizational barriers and cultural inertia in the maternity services. The ten pairs of MIDIRS Informed Choice leaflets met the following R&D criteria: · The 10 leaflets, covering discrete topics on which childbearing women would be expected to make decisions(3), were produced in pairs. One leaflet was designed for use by childbearing women and the other for use by the health professional providing maternity care. The women’s version presents information in a clear and easy-to-read style whilst the health professional’s version contains more detailed information and is fully referenced. It was intended that the latter version would be made available to women who wanted more detailed information. · The leaflets were not intended solely for client use but also to bring health professionals up to date with the best scientific evidence. · The leaflets were not intended simply to be used as an authoritative source of information; they were also intended to empower childbearing women to challenge health professionals who were not offering evidence based care · The leaflets were awarded the Crystal kitemark award for English · The leaflets received approval from the Royal Society for the Blind for layout and design · Consumer groups and other relevant organizations were involved in all aspects of the R&D process · The R&D process was a multi-professional enterprise and sought contributions from health professionals likely to be most involved in decision-making in relation to specific leaflet topics. They included midwives, obstetricians, obstetric anesthetists and ultrasonographers. · The leaflets underwent extensive piloting · The leaflets were peer reviewed by a panel of international experts · The evidence base of the leaflets was updated in 1999 More information about the Informed Choice leaflets, including plans to expand the range of topics, is available on the MIDIRS website: www.midirs.org 1.Evidence based leaflets in maternity care: their design matters Andrew Herxheimer BMJ e-correspndence: 3 April 2002 2. Stapleton H, Kirkham M & Thomas G Qualitative Study of evidence based leaflets in Maternity care BMJ 2002;324;639- 3. The Informed Choice leaflet topics: Support in Labour, Fetal heart rate monitoring in labour, Ultrasound screening in the first half of pregnancy, Alcohol and pregnancy, Positions in labour and delivery, Epidurals for pain relief in labour, Breastfeeding or bottle feeding - helping women to choose, Antenatal screening for congenital abnormalities, Breech presentation, Place of Birth. |
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