Narratives of consent and invisible women: Part 2
Chaired by Rebecca BrionneZoom
Consent is the golden principle that determines the legality of most medical treatment. However, whilst choice is the much-vaunted central tenet of maternity care, its importance emphasised in policy documents, the lived experience is often rather different, particularly in the case of women constructed as ‘other’. This class of invisible women includes women with a serious mental illness, women with a learning difficulty, women of colour, women who do not want to be mothers… In each case their ‘choice’, their ‘consent’ is devalued, afforded less significance by societal structures, healthcare professionals and indeed the law.
This panel brings together a range of researchers and practitioners from multiple disciplines to address the issue of choice in the context of reproduction, focussing upon narratives of consent as they pertain to women who all too often are rendered invisible by the law, by the healthcare professionals treating them, or by society. It is led by Dr Samantha Halliday (Durham CELLS), Rebecca Brionne (Birthrights) and Dr Jacqueline Nicholls (UCL).
1. Livia Martucci: The central role of women and families when planning care in the perinatal period
2. Samantha Halliday: Risky women, risky decisions – birth planning in the context of serious mental illness
3. Louise Nunn: Supporting women in navigating complex choices through birth planning
4. Claire Murray: Abortion and reproductive choice: supporting decision-making in pregnancy
5. Anne Lanceley: BRCA 1 and 2 Previvors: Experiences of reproductive decisions
The central role of women and families when planning care in the perinatal period. Dr Livia Martucci, Consultant Perinatal Psychiatrist, Clinical Lead for Community Perinatal Psychiatric Services in SLaM.
Each pregnancy and early postnatal period are a unique time in a family’s life. Pregnancy is also a time when most health risk factors manifest themselves and can have an impact on women’s health. This includes mental disorders, and the perinatal period is characterised by having a window of predictably increased risk of illness or relapse. This knowledge offers the rare opportunity to work towards prevention of a relapse, or early detection and treatment. When untreated, maternal mental illness has a significant impact on women, their children, partners and families. Knowing in advance that there is a higher risk of illness allows us to help women and families plan their care in a thoughtful and comprehensive fashion when they are well. However, we also need a framework for ensuring appropriate care when women are ill and lose their capacity to make decisions about their obstetric or psychiatric care. This can be a complex process that can often bring together families, health care professionals and law experts to ensure that medical, ethical and legal issues are considered whilst incorporating women’s and families’ wishes.
Conceiving Better Birth Plans: Mental Illness, Pregnancy and Court Authorised Obstetric Intervention. Dr Samantha Halliday, Associate Professor in Biolaw, Durham University.
Choice is a central tenet of maternity care, its importance is emphasized in policy documents; however, the lived experience is often rather different. In the twenty-first century, birth is framed as a medical procedure, rather than a natural process. The medical discourse is powerful and has successfully constructed pregnancy and birth as risky, as a procedure to be managed by experts using technology to ensure that nothing goes wrong. In the case of a woman with a serious mental illness (SMI) both she and her pregnancy are regarded as risky. Whilst policy documents speak of patient choice, not all childbirth options are available to all women, nor will all options be considered valid, or even responsible options. This is particularly the case when a woman has an SMI. Her choices are easily dismissed, attributed to her SMI, or a more general lack of insight, extending beyond her SMI into her pregnant state.
This paper will interrogate the use of an advance decision to plan for labour and the later stages of pregnancy in cases of serious mental illness where it is likely that the woman will lose capacity during the pregnancy. An advance decision can be a useful instrument, bridging the occurrence of incapacity by providing a clear statement of how the individual wants to be treated, or more usually what treatment she does not want to be afforded. Although there is a wealth of literature concerning advance decision-making at the end of life, significantly less attention has been paid to the use of precedent autonomy in the psychiatric context. The use of advance decisions in the obstetric (and psychiatric) context is primarily addressed within the more aspirational birth plans’ literature. Typically, in cases where a pregnant woman lacks capacity to make her own decisions, her best interests are construed in terms of ensuring the safe delivery of the child and upon a hypothesis of what the woman would have wanted, had she been well enough to decide for herself. The women are represented only by the Official Solicitor (representing her best interests, rather than her wishes) and her refusal of consent to obstetric intervention is easily dismissed. This paper will review recent case law from the Court of Protection, arguing that advance decisions could place women at the centre of these decisions, ensuring that their wishes, rather than their best interests, determine the way in which delivery proceeds and shifting away from the framing of women with SMI as objects, as recipients of care; as risks to be managed.
Supporting women in navigating complex choices through birth planning Louise Nunn, Consultant midwife.
This session will explore how ‘choice’ is framed in clinical practice:
• Recognising the unconscious bias and power exchange between health professional and patient to create meaningful dialogue
• What does choice, control and safety mean to women?
• The importance of a trauma-informed approach to understand choices
• Do women make ‘unwise decisions’?
• Navigating complex plans in practice – challenges in the absence of evidence with examples
Abortion and reproductive choice: supporting decision-making in pregnancy Dr Claire Murray, lecturer in law, University College Cork
This paper will begin by highlighting the range of barriers to accessing termination of pregnancy services where capacity is an issue, with a particular focus on other people as a barrier to accessing services. It will then move on to consider the role of support in overcoming these barriers, the importance of independent advocacy, but also the limitations of these supports. Finally, the paper will interrogate the extent to which will and preferences are being engaged with in the context of access to abortion services.
BRCA 1 and 2 Previvors: Experiences of reproductive decisions Dr Anne Lanceley, Associate Professor in Women’s Cancer, UCL EGA Institute for Women’s Health.
Mutations of BRCA1 and BRCA2 genes are associated with an increased risk of breast and ovarian cancer. Female carriers of the mutation have a 65-80% lifetime risk of breast cancer and a 20-45% risk of ovarian cancer. Risk reducing salpingo-oophorectomy has been associated with a significant reduction in breast and ovarian cancer and is recommended to BRCA carriers by the age of 40 or after completion of childbearing. Recent literature suggests that that BRCA mutations are associated with a decreased ovarian reserve and earlier menopause.
Expanded genetic testing of BRCA mutations has led to identification of more previvors – women of reproductive age who test positive for the mutation, have a limited reproductive window and face potential risks to their fertility which might impact attitudes and decisions about relationships, parenthood and the use of preimplantation genetic diagnosis (PGD) and prenatal diagnosis (PND).
Using two patient cases this talk spotlights the potential complex reproductive options and decision-making for this group of previvors. The sensitive nature of these topics indicates a need for more counselling regarding reproductive choices alongside cancer risk focused guidance.