Birthing outside the system: trauma and autonomy in maternity care Martine Helene Hollander Birthing outside the system: trauma and autonomy in maternity care Proefschrift ter verkrijging van de graad van doctor aan de Radboud Universiteit Nijmegen op gezag van de rector magnificus prof. dr. J.H.J.M. van Krieken, volgens besluit van het college van decanen in het openbaar te verdedigen op dinsdag 19 maart 2019 om 14.30 uur precies door ISBN 978-94-028-1373-9 Design/lay-out Martine Helene Hollander Promotie In Zicht, Arnhem geboren op 11 januari 1975 te Leiderdorp Print Ipskamp Printing, Enschede © M.H. Hollander, 2019 All rights are reserved. No part of this book may be reproduced, distributed, stored in a retrieval system, or transmitted in any form or by any means, without prior written permission of the author. Promotoren Contents Prof. dr. F.P.H.A. Vandenbussche Prof. dr. J.A.M. van der Post (Amsterdam UMC) Chapter 1 General introduction 7 Copromotoren Chapter 2 Women refusing standard obstetric care: maternal-fetal conflict 19 Dr. J. van Dillen or doctor-patient conflict? Legal and ethical considerations Dr. E. de Miranda (Amsterdam UMC) Chapter 3 Women’s motivations for choosing a high risk birth setting 31 Manuscriptcommissie against medical advice in the Netherlands: a qualitative analysis Prof. dr. A.E.M. Speckens Chapter 4 Fulfilling a need. Holistic midwifery in the Netherlands: 59 Prof. dr. S.A. Scherjon (Universitair Medisch Centrum Groningen) a qualitative analysis Dr. A. de Jonge (Amsterdam UMC) Chapter 5 ‘She convinced me’- Partner involvement in choosing a high 91 risk birth setting against medical advice in the Netherlands: a qualitative analysis. Chapter 6 Less or more? Maternal requests that go against medical advice. 121 Chapter 7 When the hospital is no longer an option: A multiple case 143 study of defining moments for women choosing home birth in high-risk pregnancies in the Netherlands. Chapter 8 Preventing traumatic childbirth experiences: 2192 women’s 177 perceptions and views Chapter 9 Psychosocial predictors of postpartum posttraumatic stress 197 disorder in women with a traumatic childbirth experience. Chapter 10 Women who desire less care than recommended during 221 childbirth: results of three years dedicated clinic. Chapter 11 General discussion and conclusions 237 Chapter 12 Developments since the start of this project 255 Chapter 13 Summary | Samenvatting 261 Chapter 14 List of abbreviations and terminology 277 List of publications 279 List of co-authors 283 PhD portfolio 285 Dankwoord 291 Curriculum vitae 295 1 General introduction 8 | Chapter 1 General introduction | 9 General introduction Jeske is expecting her first child. She has had a difficult childhood, and not many friends 1 or family. The pregnancy is complicated by severe pelvic pain and she has difficulty walking. Around the due date, labor starts suddenly and one contraction quickly follows another. She calls her midwifery practice, and a locum midwife, whom she has never seen before, comes to her house. After several hours and only two centimeters of dilation, she asks her midwife for pain relief and she is transported to the hospital for an epidural. Jeske feels that the anesthetist is in a hurry. “I was forced to sit cross-legged and couldn’t move. Meanwhile it was one contraction after another.” Pain relief is suboptimal, and Jeske is surrounded by unknown people. She remembers being told to lay on her back without much explanation, and an electrode is placed on the baby’s head. When she reaches complete dilation, she is told to start pushing, even though she feels no urge. She is left pushing with a nurse for 45 minutes, after which an obstetrician enters. All she remembers of this is him saying: ‘I am here to help you.’ The next things she remembers is that he “pushes the ventouse in”, without much in the way of explanation. She has no idea what to do, but tries to push. It is in vain. She is taken to the operating room for an emergency cesarean section. At the follow-up appointment six weeks later, Jeske has recovered well physically, but nobody asks her how she feels about the birth. She has recurring nightmares, and has been experiencing vaginism ever since, which was never an issue for her before. (‘Jeske’, which is not her actual name, has read her story as presented here and has given permission for it to be used.) Jeske’s story is an example of how maternity care, conducted according to guidelines and protocols and carried out by maternity care providers with the very best intentions, can result in trauma for the women involved. This trauma may cause some women to decide to avoid future medical care, or decline certain parts of recommended care for their next pregnancy and birth. These phenomena gained national attention in the Netherlands in 2013, when three community midwives were tried by the medical disciplinary committee for delivering assistance during home births in high risk pregnancies1. Home births in high risk pregnancies were not unheard of in the Netherlands, even prior to this court case. Also in 2013, the Amsterdam UMC, AMC had started a designated clinic for women who planned to go against medical advice in their choices surrounding birth, including those planning a home birth in a high risk 1 https://zoek.officielebekendmakingen.nl/stcrt-2014-18656.html 10 | Chapter 1 General introduction | 11 pregnancy2,3,4,5. However, the court case referenced here was the first time Magnitude of the problem: what is known? midwives were prosecuted for attending home births in high risk pregnancies, since this was considered an undesirable development by both the Health Care It is currently unknown exactly how many women choose to have an unassisted 1 Inspection, who initiated the court case, and many maternity care providers in childbirth in the Netherlands each year, although this number has been the country. All three midwives were reprimanded, and one was struck off, estimated to be around 2006, which makes up approximately 0.12% of all births. although the latter verdict was overturned on appeal and converted to a There are no data at all on the number of Dutch women choosing home birth in one-year’s license suspension. The reasoning by the court of appeals in this case a high risk pregnancy. Why women would make these choices has also never was that second best care, for instance a midwife attending a high risk home before been investigated in the Netherlands. However, several studies from birth, was preferable to no care at all, providing the woman in question had other countries have been published on the motivations of women to choose been adequately counseled. The reprimands and suspension were, among other high risk birth options, which are summarized in a recent scoping review of 15 reasons, due to the fact that insufficient case notes were made by the midwives studies by Holten and De Miranda.7 The themes found in this review were: to prove that they had recommended hospital care and that the women in this resisting the biomedical model of birth by trusting intuition, challenging the case had been adequately counseled about the risks they were taking. The ruling dominant discourse on risk by considering the hospital as a dangerous place, of the court of appeals was cause for concern for many community midwives in feeling that true autonomous choice is only possible at home, perceiving birth as the Netherlands, because it was made clear that conflicting interests could occur an intimate or religious experience, and taking responsibility as a reflection of in situations where women ‘demand’ care outside protocols and midwives don’t true control over decision-making. The studies used for this review all originated feel comfortable providing such ‘second best care’, for which they may feel in countries where home birth is not institutionalized: Finland, Sweden, the unequipped, unqualified and which can make them feel emotionally vulnerable. United States, Australia, or is a marginal phenomenon: Canada. Unfortunately, This ruling stressed the urgency of further research into the phenomenon of no studies had yet been done in countries with an integrated home birth system, women disregarding medical advice and giving birth at home in a high risk such as New Zealand, the United Kingdom, or the Netherlands, with its pregnancy, or choosing unassisted childbirth (UC), and led to the inception of maternity care system known for a physiological approach to childbirth and the this thesis. general acceptance among both public and professionals of home birth as a regular option for healthy women with a low risk pregnancy. Because of this physiological approach, it may seem all the more surprising that the phenomenon of ‘birthing outside the system’ also occurs in the Netherlands. However, the apparent increase in women who choose to go against medical advice in their birth choices could be seen in the context of other developments of the last decade. In 2008, the Netherlands saw the publication of the first PERISTAT (Perinatal Statistics) report, in which perinatal health indicators of 29 European countries were compared8. The perinatal mortality rates of the Netherlands were relatively high in comparison to other high income countries. This prompted the Ministry of Health to appoint a Steering Group Pregnancy and Childbirth (Stuurgroep Zwangerschap en Geboorte), which produced a report making suggestions for increasing safety around pregnancy and 2 https://www.amc.nl/web/ik-heb-een-afspraak-1/mijn-afspraak-in-het-amc/poli-ondersteuning- maatwerk-zwangerschap-geboorte-pom-polikliniek.htm 3 https://www.trouw.nl/home/goed-gesprek-helpt-bij-weigermoeder-die-per-se-thuis-wil-bevallen~ ab1f0831/ 4 http://www.maia-verloskundigen.nl/geldersevallei/_sitefiles/file/De%20Graaf%202014%20 6 Verbeek A.