Like any person, pregnant women have the legal right to make autonomous decisions about their healthcare (Kruske, Young, Jenkinson & Catchlove, 2013). But when a woman’s decision increases the risk of harm to her baby, maternity providers may feel confused and the right to decline may become contentious (Kruske et al., 2013; Jenkinson, Kruske & Kildea, 2018). For example, surveyed Australian obstetricians and midwives mistakenly believe that the needs of the woman can be overridden if their is concern for the fetus – and that doctors have legal responsibility for birth outcomes (Kruske et al., 2013). Indeed, health provider support for maternal autonomy may be bounded by “the clinician’s line in the sand” (Jenkinson, Kruske & Kildea, 2017). That means, if a woman’s refusal of care crosses the line, providers may use a range of escalating strategies to convince women to accept recommended care (Jenkinson et al., 2017).
Survey of ‘patient-provider’ experiences
A recent Canadian study has focussed on the topic of declining recommended maternity care (Stoll et al., 2021). This study used relevant data from a larger survey about user experiences of ‘patient-provider’ interaction in maternity care. Of the 2100 survey respondents, just over half indicated they had declined an element of maternity care. Respondents who had declined care were prompted to provide free text comments to describe their experience in detail. The researchers then used a form of content analysis to transform the responses from words into numbers. However, at times, participant quotes were used to illustrate and validate the results. The results present what they declined, why they declined, and how their healthcare provider responded to their decision to decline recommended care.
Most declined elements of care
The most declined elements in pregnancy were genetic testing, ultrasound and gestational diabetes testing (Stoll et al. 2021). For labour and birth, the most declined components were induction of labour, epidural, fetal or maternity monitoring, and antibiotics (Stoll et al., 2021). During the postpartum, the most declined procedures were application of antibiotic eye ointment and Vitamin K for the newborn baby (Stoll et al., 2021).
Reasons for declining elements of care
Participants’ reasons for declining an intervention were put into categories:
- preference for an alternative
- considered bad for baby
- information / research did not support the intervention
- health reasons
- healthcare providers rude or incompetent
- inconvenient (Stoll et al., 2021).
Provider responses to declining care
Most comments indicated the decisions to decline care was accepted and supported by the healthcare provider: “The doctor presented the pros and cons and left the decision up to us” (Stoll et al., 2021, p.7). However, a significant number of comments described a reaction that was disrespectful or tried to convince them to accept the intervention: “I felt very pressured” (Stoll et al., 2021, p.7). In some instances, the provider ignored the decision and proceeded without consent: “I screamed for her to stop and she just kept going” (Stoll et al., 2021, p.7).
What does this mean for maternity care?
When women’s decisions about their maternity care are not supported by their care provider, it undermines their autonomy and exemplifies disrespectful treatment (Niles et al., 2021). Disrespect and abuse in maternity care is not due to a few bad apples – “it runs wide and deep within the maternity services of many countries” (Freedman, 2014, p.42). If the decision to decline care results in stigma and discrimination, failure to meet professional standards, or poor rapport between women and providers; then it constitutes mistreatment (Bohren et al., 2015). Disrespect and abuse in maternity care has been normalised and accepted, and therefore may not be recognised by either women or providers (Freedman, 2014).
Earlier this year, Transforming Maternity Care Collaborative facilitated key stakeholder workshops to co-design a Normal Birth Strategy for an Australian state health department. A key principle that underpinned the Strategy was this – we centre women’s informed decision-making, access, and control. Many maternity care providers have not received training in shared decision-making, or the high-level communication skills that underpin it (Coates & Clerke, 2020). Therefore, mandatory education about how to discuss the risks, benefits and alternatives to intervention, would be useful.
Perhaps more crucial, however, is that providers understand women’s legal right to make autonomous decisions about their healthcare. That means when a woman declines a test or treatment, providers must be able to give respectful care that meets professional standards for communication and behaviour. To assist with this, Jenkinson et al. (2018) recommend the use of a Personalised Alternative Care and Treatment framework to document information exchanged between provider and woman, to enable communication between clinicians, and act as a living plan that respects the woman’s decision to decline recommended maternity care.
Highlighted article with free full-text access
Stoll, K., Wang, J. J., Niles, P., Wells, L., & Vedam, S. (2021). I felt so much conflict instead of joy: an analysis of open-ended comments from people in British Columbia who declined care recommendations during pregnancy and childbirth. Reproductive Health, 18(1). https://doi.org/10.1186/s12978-021-01134-7
Bohren, M.A., Vogel, J. P., Hunter, E.C., Lutsiv, O. et al. (2015). The mistreatment of women during childbirth in health facilities globally: A mixed-methods systematic review. PLoS Medicine, 12(6), e1001847. https://doi.org/10.1371/journal.pmed.1001847
Coates D., & Clerke T. (2020). Training interventions to equip healthcare professionals with shared decision-making skills: a systematic scoping review. Journal of Continuing Education for Health Professionals, 40, 100-119.
Freedman, L. P. (2014). Disrespect and abuse of women in childbirth: challenging the global quality and accountability agendas. The Lancet, 384, e42–3. https://doi.org/10.1016/S0140-6736(14)60859-X
Jenkinson, B., Kruske, S., & Kildea, S. (2018). Refusal of recommended maternity care: Time to make a pact with women? Women and Birth, 31(6), 433-441. https://doi.org/10.1016/j.wombi.2018.03.006
Jenkinson, B., Kruske, S., & Kildea S. (2017). The experiences of women, midwives and obstetricians when women decline recommended maternity care: a feminist thematic analysis. Midwifery. https://doi.org/10.1016/j. midw.2017.05.006. 10.
Kruske, S., Young, K., Jenkinson, B., & Catchlove, A. (2013). Maternity care providers’ perceptions of women’s autonomy and the law. BMC Pregnancy and Childbirth. https://doi.org/10.1186/1471-2393-13-84.
Niles, P. M., Stoll, K., Wang, J. J., Black, S., & Vedam, S. (2021). “I fought my entire way”: Experiences of declining maternity care services in British Columbia. PloS One, 16(6), e0252645. https://doi.org/10.1371/journal.pone.0252645