‘I Just Want to be me’

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Dr Jacqueline Nicholls, UCL.

It is axiomatic that I should be able to choose what is done to my body. Nowhere is this more widely voiced than maternity care. A wealth of policy and common law requires that autonomous choice-making be supported. Intrinsic to lawful consent is a proper recognition of those personal dimensions – values, preferences, circumstances – that influence an individual’s choice-making. So far so good. Yet such recognition is a notion easily voiced but challenging in practice. ‘I’ and ‘my’ seem to be difficult for individuals and systems to hear despite a sense of control and choice being recognised as key to many people’s birth experience. Indeed, as all the chapters in this volume show, genuine supported consent and choice-making is too often the exception not the rule. This is reflected in people’s lived experiences be they clinicians or birthing people.

My chapter in this volume considers both perspectives. Drawing on a range of my own and others research studies I argue that the laudable rhetoric surrounding lawful consent is seldom realised in practice. There is a degree of vagueness concerning what  lawful consent looks like. What does it mean for a clinician to ‘enable’ another person to make a decision that is authentic to their personal values? This is a big ask. I argue that uncertainty surrounding what constitutes Montgomery-compliant practice means that it is often interpreted primarily as an edict requiring the factual disclosure of risk, rather than as the foundation for personalised dialogue. I suggest that underpinning this is a somewhat notional view of autonomy, one grounded in information disclosure focussed on isolated decisions, rather than one rooted in seeking to appreciate the complex nuances of individual lives.

Furthermore, there is an odd disconnect between clinicians’ stated commitment to shared decision-making and holistic care, and individuals’ lived experiences of the process of consent. It is as though consent is separate from an individual’s right to autonomous involvement in their care, rather than intrinsic to that care. The chapter considers the disconnect in the consent encounter between a clinician seeking, ‘to do no harm’ and avoid both litigation and peer censure and an individual who wants to feel personally known and heard. I argue that too often the mantle of expertise is presumed by a clinician at the expense of recognising that a birthing person is the expert in her own life in all its richness, including, but not limited to her values, feelings, and preferences. Consent as a partnership of experts requires a commitment to enabling birthing people to collaborate as authentic partners in their care and so I argue that explicit recognition of a birthing person as a credible knower is required.

The chapter further describes how the recognition of birthing people as credible knowers and equal partners in their care is undermined by consultations which frame them as clinical risk containers as though that is the sum of their identity. Inevitably this leads to sidelining of the broader factors which affect a person’s decision-making, and which may bear little relation to clinical risk. I argue that it is a potent way of rendering a birthing person  invisible and, furthermore, no birthing person is exempt. Time-critical care can, of course, be a key consideration in maternity care but I suggest that often the guise of time-criticalness provides an easy excuse to neglect the challenge to frame consent decisions in ways which recognise the subtleties of individual autonomy, and which actively explore women’s values, priorities and preferences.

Finally, this chapter highlights the need to recognise consent as an ongoing process which runs throughout a pregnancy. Consent is not merely a binary event. Too often even if a clinician offers an individualised approach in a particular consultation(s), that same approach may not be replicated as a woman progresses through the organisation. Overall, I suggest that this begs the question of how big a shift there has genuinely been in the way consent decisions are effected in the antenatal and intrapartum contexts.

Women want to be heard and seen as individuals. Clinicians want to put their patients first; most want to treat them as individuals. Yet, the lived experiences of both groups do not reflect these aspirations. This chapter concludes by suggesting we are at a fork in the road: either we choose to evolve ways in which the law more effectively serves women’s voices in practice, or we risk being defeatist and recognise the challenge as a wicked problem and at least stop allowing it to hide behind empty rhetoric.

Reflecting on this rather dispiriting  conclusion it is tempting to wonder whether we should be asking a more fundamental question, one which challenges consent and choice as first cousins. The underlying assumption of consent as a legal device to enact autonomy supporting practice is questionable at any time. It is especially so in the extremis of circumstance such as labour or, equally, the extremis of being a woman who, for whatever reason, is rendered invisible. It is, as one colleague said to me, ‘too easy for a consent form to be wafted in front of a woman.’  I wonder if we should  disaggregate consent from notions of choice-making and seek to emphasise and even formally regulate discussions of choices and what matters to women as a first stage in evolving a genuinely effective consent process. This is a big ask but as this chapter shows there is a big problem to be rectified.

To celebrate publication of the edited collection we are delighted to share this 20% discount code (25AFLY3), click here to use it!