The right to decline all or some elements of recommended or routine care, interventions or processes in any healthcare setting sits within the context of the universal right to protection of the security of the person (United Nations, 1948) and respect for a private family life, as well as residing within a framework for respectful and dignified maternity care (Human Rights Act, 1988; Council of Europe, 1990) and is legally protected within the UK.
Anyone accessing healthcare, including competent pregnant women, have the unalienable right to make decisions about their care, including declining such, even if that decision might lead to the death of her or the fetus, or if the decision appears to onlookers to be unwise or without reason (St George's Health Care NHS Trust v SR v Collins and others ex parte S, 1997). Guidance supports an automatic presumption of capacity to make decisions (General Medical Council, 2020) without any assumption being made that age, medical condition (including mental ill health) (High Court of Justice, Family Division, 1994), beliefs or a decision being made that clinicians might consider unwise or morally challenging, none of which would automatically imply lack of capacity (Birthrights, 2017; General Medical Council, 2020). Therefore, the right to decline is intrinsically linked to informed consent and autonomy. For consent to be considered informed and valid, it must be voluntary, freely given and, importantly, is not a static and once only event; it can be withdrawn at any time. Therefore, declining recommended or routine care is synonymous with withholding or refusing consent.
Previously, discussions have explored acknowledgment of and support for maternal autonomy in decision making and the rise of freebirth (Davison, 2021a; 2021b), which highlight difficulties that arise when informed choices are made that might challenge a clinician's moral and ethical viewpoints. Kotaska (2017) suggests this can create an ‘ethical tension’ between clinicians and those making choices. This can potentially affect professional relationships and communication, occasionally manifesting in attempts to coerce into acceptance, restricting the type and extent of information required to make an informed decision and defensive practice. This can include threatened or actual legal or social services referral, despite professional guidance suggesting otherwise (Care Quality Commission, 2019; Royal College of Midwives, 2021). Professional codes of conduct make explicit the requirement for respectful support where someone exercises rights to decline care (Nursing and Midwifery Council, 2018).
The individual context in which any decision is made is influenced by personal and familial experience, societal and cultural beliefs and understandings, as well as individual needs, wants, preferences and values. This is an important consideration both in relation to effective personalised discussion of risks and benefits of recommended care and reasonable alternatives to gain informed consent (Montgomery v Lanarkshire Health Board, 2015) as well as the requirements for enabling choice and personalisation of care planning (NHS, 2019; 2021; NHS England, 2021).
In recent years, focus has been drawn to how clinicians support women who choose to birth outside of guidelines, which includes declining elements of care. Historically, published literature on the support and management of ‘refusal’ of elements of care tended to focus on obstetric ethical dilemmas and clinical management associated with subjects, such as declining caesarean section (Ribak et al, 2011), blood products (Van Wolfswinkel et al, 2009) and uptake of congenital defect screening (van den Berg et al, 2005), with a focus on the likelihood of perinatal and maternal mortality and morbidity. Emerging evidence is beginning to inform approaches to woman-centred care planning in the presence of ‘out of guideline’ choices, including freebirthing, choosing a place of birth that falls outside of medical or obstetric recommendation or in the presence of obstetrically/medically defined risk factors (Feeley et al, 2019; 2020; 2021; Madeley et al, 2019; Westbury and Enion, 2021).
Understanding motivations, influences and reasons for elements of care in maternity is necessary, as such decisions are hugely individual and complex. By understanding the processes behind such decisions, we may build an evidence base upon which to establish respectful and dignified care pathways. Research within a UK context has begun to explore this, mostly related to a specific focus on discrete phenomena including freebirth (Feeley and Thomson, 2016a, b; Plested and Kirkham, 2016; McKenzie et al, 2020; Greenfield et al, 2021), water birth after caesarean (McKenna and Symon, 2014), declining induction (Roberts and Walsh, 2019) and high-risk homebirth (Lee et al, 2016a, b; Price, 2020). To date, the experiences of women making atypical choices in the UK, including those declining discrete elements of routinely offered or recommended care across the maternity care continuum (with some notable exceptions as previously discussed), remain largely unexplored. Globally however, research has attempted to address these understandings.
A study undertaken in Australia (Jenkinson et al, 2016) used a descriptive thematic analysis of women, midwives and obstetricians, to explore the experiences of refusal of recommended care in Australia, as part of a larger critical feminist exploration of whether a structured process for documenting such decisions would support the rights of women to decline care. Interviews were conducted with nine women (as well as 12 midwives and nine obstetricians) who had declined elements of care, including for example, caesarean section, continuous cardiotocograph monitoring and induction of labour. Three themes were identified: ‘valuing the woman's journey’, ‘the clinicians' line in the sand’ and ‘escalating intrusion’.
Valuing the woman's journey encompassed how by declining elements of care, women were able to assert an ability to attempt a preferred birth choice and by doing so, be heard, taking into consideration the context in which decisions were made. This context may have included how the woman viewed birth (as a rite of passage), or be influenced by social factors such as recovery time, other children and bonding, as well as avoiding previous experiences. Importantly, women identified that their declination was not a fixed choice, rather that it existed amid balancing risk and remaining flexible to alternatives. This was also noted to be influenced by a trusted woman–caregiver relationship.
The clinician's line in the sand described how clinicians spoke of respect for women's autonomy in decision making and yet had clearly defined perimeters within which they are constrained in their professional practice and how reasonable they considered women's choices or intention to be. Interestingly, this was found to vary on a clinician to clinician basis, and be dependent on the profession in question, including evidence of the ethical tension, as previously discussed (Kotaska, 2017), often in relation to maternal and fetal risk.
Escalating intrusion spoke of the resultant actions of clinician responses once their choices had been deemed to have crossed the ‘line in the sand’. This existed on a continuum of behaviours from manipulation, bargaining and misrepresentation of information designed to influence changes in decisions. Concerningly, women reported feeling judged, being condemned, abandoned, badgered and in one account, described an assault. Clinicians described other colleagues labelling women as, among other things, ‘aggressive’, ‘manipulative’, ’stupid’ or judging their ability to mother.
More recently, in British Columbia, Canada, a study conducted content analysis of qualitative data arising from a larger dataset of open ended responses from an online cross sectional survey, Changing Childbirth in British Columbia (Birth Place Lab, 2019). The study comprised 1123 accounts from women who were asked to describe experiences of declining or ‘refusing’ any element of their care, if they indicated they had done so (Niles et al, 2021). Four themes were identified: ‘contentious interactions: I fought my entire way’, ‘knowledge as control, knowledge as power’, ‘morbid threats: do you want your baby to die?’ and ‘compliance as valued: to be a good client’.
Contentious interactions demonstrated how, when declining elements of care, relationships with and between women and caregivers can become tense, with behaviours exhibited such as being pressured to comply with recommendations and interventions, feelings of abandonment and having to fight for their choices and ultimately their autonomy. Information being withheld featured within this theme, but also within the second, ‘knowledge as control, knowledge as power’. This theme demonstrated how those who hold the knowledge hold the power, with women describing how caregivers framed risk inappropriately, using knowledge to manipulate, ignoring and judging informed questioning. Holding knowledge conversely worked to empower women, particularly in the presence of discussions that were ‘robust’ and valued.
‘Morbid threats – Do you want your baby to die?’ demonstrated how in the presence of declining an intervention, ‘aggressively coercive’ language was used to manipulate compliance to be a ‘good client’, which as the final theme demonstrates, was highly valued.
A further analysis explored why women decline routinely offered or recommended care, as well as demonstrating the breadth of declined interventions within the context of Changing Childbirth in British Columbia, how care providers reacted and how those declining felt about the reaction (Stoll et al, 2021).
These studies highlight the importance of understanding the experiences of declining care (or any atypical choices), including barriers to respectful and dignified care in this regard. Declining routine or recommended care and interventions along the childbirth continuum is not an uncommon phenomenon, particularly where these relate to discrete elements such as vaginal examinations, abdominal palpation or screening. However, it is largely hidden, as data are rarely collected to illustrate the extent to which this occurs as well as how women experience or feel about asserting such choices. This is significant, since without such understanding it is impossible to develop a holistic approach to personalised care planning. Ssupporting women who make such choices involves acknowledging that safe care extends beyond the physical to encompass emotional and psychological safety and wellbeing. These are inextricably linked to the ability to assert bodily autonomy and retention of control and informed choice (Cook and Loomis, 2012; Yuill et al, 2020). As Niles et al (2021) suggests, ‘examining experiences of declining recommended perinatal care can serve as a proxy to understand how autonomy is exercised’. UK-based research in this regard is ongoing and continues to be an emerging field of enquiry, with a view to improving all outcomes for women who say no as a complete sentence.