This is the first study in Canada to explore the experiences of childbearing people declining care offered or recommended by midwives, physicians or nurses. In our sample, more than half of participants declined care at some point during pregnancy, birth, or the postpartum period (53.5%), making this a common phenomenon. The most commonly declined test or procedure was prenatal testing, such as genetic or gestational diabetes testing, and newborn treatments (eye ointment for the newborn, vitamin K). Declining tests or procedures during labour or birth was less common. Participants described many reasons for declining care, but the most commonly cited were beliefs that the test, procedure or medication was unnecessary or did not align with their values.
A study with maternity care providers in the Netherlands, about maternal requests that go against medical advice, revealed that women most frequently declined gestational diabetes screening (66.3%), hospital birth (65.3%), and fetal monitoring (both continuous and intermittent) during labour (39.6%) [22]. These results align with the findings of the current study and warrant further exploration of how care providers can best communicate the rationale for these tests and procedures to clients and remain respectful when clients decline care.
Our finding that childbearing people most often decline care during pregnancy is supported by research with more than 2000 pregnant and postpartum people in the United Kingdom, who were surveyed about their ability to exercise informed consent. Perceptions of informed choice were very different for tests/procedures in the prenatal period compared to birth. For instance, 73% reported making an informed choice about genetic screening during pregnancy, but only 31% felt they made an informed choice about electronic fetal monitoring (EFM) during labour [23]. The best available evidence shows that continuous EFM versus intermittent monitoring is associated with an increase in Cesarean sections and instrumental vaginal deliveries but no decrease in neonatal mortality [24]. Hersh et al. have published a case report that describes how care providers can support decision-making around intermittent auscultation by using a woman-centered decision- making pathway for fetal monitoring [25].
These results, together with findings from the current study, emphasize the need for care providers to begin discussions during pregnancy about the pros and cons of common labour and birth interventions and procedures, including the evidence basis for recommendations, so that people have time to understand different procedures, and an opportunity to consider their options.
When participants recounted care provider reactions to their decision to decline care the majority said that their decision was accepted or supported; however, a sizable number also described care providers who were disrespectful or pressured them to accept care they did not want. At times, participants questioned if they were doing the right thing leading to perceptions of conflict rather than joy as described in the title of this paper.
In the current study, feeling pressure from maternity care providers led to feeling vulnerable and invisible and resulted in loss of autonomy. These findings suggest that both what is offered and the way it is being communicated are equally valuable to childbearing people. Being pressured into complying with unwanted care can have long-lasting psychological consequences and can lead to termination of care, as our results indicate. In one study with more than 1500 people in the United States (US) who recently gave birth at a hospital, predictors of birth-related post-traumatic stress disorder (PTSD) were assessed. Pressure from care providers to have an induction or cesarean section was one of the factors significantly linked to PTSD symptoms [26]. In an analysis of the full Changing Childbirth in BC dataset Vedam et al. [27] identified that pressure to have an induction or cesarean section, along with perceived differences in opinion between childbearing people and their providers (about care options), were significantly linked to loss of autonomy among childbearing people. These findings, together with results from the current analysis, establish a firm connection between pressure and coercion from care providers, loss of autonomy, and post-traumatic stress [22].
Our findings show that failure to gain clear, unambiguous consent for procedures or treatments contributes to mistrust of care providers among people who decline care. Feeling betrayed and powerless and losing trust in care providers were also themes that emerged in the stories of 40 women who described their births as traumatic [28]. In another study with 2192 women from the Netherlands, loss of control and fear for the baby’s life were the two most commonly reported reasons why people felt traumatized. When asked what care providers could have done to prevent the traumatic experience, the most common answers were: 1) communicating more and explaining things better, 2) listening more, and 3) providing emotional support [29]. Our findings support the results from the Netherlands, as many participants noted that care providers did not listen and/or did not take the time to explain if and why a test or procedure was necessary.
Reed et al. surveyed 748 women in Australia who described a traumatic birth experience [30]. Common themes included “prioritising the care provider’s agenda”, “disregarding embodied knowledge”, “lies and threats”, and “violation”. These themes resonate through our data as well, with many accounts of care providers ignoring people’s knowledge of their own bodies and/or rigidly promoting care plans that people did not agree with.
Negative birth experiences and birth trauma impact the transition to parenthood negatively [31] and are linked to decisions to avoid contact with the healthcare system in future pregnancies [32].
Midwives, family physicians, obstetricians, and nurses can provide respectful maternity care by ensuring client autonomy is supported through engaging in a person-centered decision-making process [33]. However, research with maternity care providers shows that they support people’s right to make decisions about their own care “within reason” and that the wishes of pregnant people can be overridden during emergencies [34]. The higher risk of mistreatment during emergency situations has been demonstrated from the perspectives of childbearing people. In the Giving Voice to Mothers study, 2700 childbearing people were surveyed about pregnancy experiences in the US between 2010 and 2016. People with emergency cesarean sections reported higher rates of mistreatment by care providers, including pressure to accept treatment they did not want, compared to those with a vaginal birth or planned cesarean Sect. [35].
In the current study, participants described such interactions as “abuses of power” and were distressed by these care provider behaviours. Morton et al. surveyed close to 300 maternity care providers in the US and Canada and found that they often witnessed verbal abuse, specifically threats to the baby’s health and well-being if the pregnant person did not comply with recommendation [36]. Our results support Morton’s findings, as several participants described being told that their newborn was in danger, with the implication that they were unfit mothers for not complying with recommendations. Bioethicist Raymond de Vries describes this phenomenon as the invisible mother, because “concerns and needs of women in labour fade in the face of hospital policies and the perceived needs of their soon-to-be-born babies” [37]. Other authors have grounded their analyses of situations where childbearing people decline care in critical feminist theory and highlighted how risk discourse and the dominance of medical knowledge are used to restrict or remove women’s bodily autonomy and right for self-determination [9].
The data also suggests that childbearing people in our sample declined tests or procedures because they found them to be unnecessary, preferred an alternative or had access to information that did not support use of the test, medication, or intervention. In some situations where people declined tests or procedures, care providers presented information with the sole purpose of gaining compliance, rather than discussing options. It is well accepted that knowledge is power and that there are inherent power imbalances in the provider-patient relationship [38]. In one study with 22 self-identified women of colour who were interviewed about their pregnancy and birth experiences, themes of power and control emerged. Specifically, respondents felt that care providers were controlling the information that women received, and how information was provided affected the level of autonomy and self-determination of childbearing women. Information provided by healthcare providers that was perceived as truthful, comprehensive and unbiased supported autonomous decision-making whereas information that was withheld, misleading, or biased reduced autonomy. Participants also noted that the way care providers communicated information depended on women’s ethnicity, educational level, insurance status and other factors and that a trusting relationship with care providers enhanced women’s experiences with care [38].
Alignment of findings with meta-synthesis of SDM and informed choice
We consider our results in the context of themes and interlinking actions discovered during the meta-synthesis by Yuill et al. [3]. In the meta-synthesis childbearing women wanted to protect their bodily autonomy and integrity through making decisions about their care. When care providers denied this bodily autonomy childbearing people experienced loss of control. Our findings strongly resonate with this theme as many participants described the act of declining care as a way to control and protect their care experiences and their babies. Descriptions of denial of autonomy by care providers highlight the consequences of this denial, including loss of trust, and emotional reactions ranging from being disappointed to devastated and traumatized. Several participants recounted how previous negative or traumatic experiences during pregnancy and/or birth strengthened their resolve to reclaim control and autonomy by declining care they did not want in subsequent pregnancies, even planning to give birth unassisted. The third theme ‘Performing good motherhood’ is also evident in our analysis because care providers at times tried to gain compliance by telling women that they were putting their babies at risk. The current analysis expands on the description of this theme by showing what happens when women are coerced to comply with care recommendations. For example, the midwifery client with breastfeeding challenges who repeatedly declined formula but gave in eventually because of exhaustion felt like a failure for not being able to breastfeed. In this situation, the woman’s internal perception of being a good mother was disturbed by giving formula to her baby. In other words, coercing women into accepting care or interventions they do not want can impact women’s internal perceptions of self-efficacy and motherhood.
The current analysis also shows strong support for the interlinking actions of information gathering, balancing choice and birth philosophy. Analysis of comments about why people declined tests or procedures clearly indicated that this decision was based on information gathering and/or birth philosophy. For example, 600 comments referred to people declining care because they thought the test or procedure was unnecessary. This strongly implies they either had gathered information that supported that decision and/or were committed to a low-intervention approach to labour and birth. Many others declined care because they preferred an alternative or had information that was contrary to care provider recommendations, enabling them to feel confident in the decision to decline care. Comments indicated that the balancing of risks and benefits and the managing of uncertainty were things that women mostly accomplished prior to declining care.
Implications for practice
Informed choice
Childbearing people who trust their care providers are more likely to accept tests and procedures and feel more comfortable discussing reasons why they prefer to decline care [39]. Michelle DeBaets recommends ongoing discussions before and during birth, to establish a birth partnership that is focused on trust, two-way communication, mutual education, and person-centred decision-making. Care providers are encouraged to share their own birth philosophies and practices with clients, and extending the length of prenatal visits to allow them to develop an understanding of the preferences and expectations of clients [39]. A central feature of the birth partnership is mutual education about choices and the “values that inform those choices” [39]. The author provides a helpful set of questions that can guide these discussions (e.g. What are the person's core values and goals of birth? What are their fears? Are there specific forms of treatment that the person does or does not want? Why? If labour does not go as expected, how will the person address their options for interventions?) Childbearing people retain the right to refuse care recommendations and care providers can avoid conflict by building trust through respectful interactions, providing high-quality evidence and discussing options ahead of time. The author also offers important guidance for teams with differences in birth philosophy and practices, so that they can provide consistent and respectful care to clients [39].
Childbearing people from minority communities often experience systemic racism and/or discrimination when accessing health care, and as a result might be hesitant to trust providers. [17, 38]. Racial congruence between pregnant people and providers creates a shared understanding that helps to build trust. [38].
Health professional education
Efforts to identify and reach consensus about quality criteria and professional competencies for applying person-centered decision-making in maternity care have been published [40]. Several training programs in shared decision-making and person-centered decision-making for healthcare providers exist. For example, Dialogue and Decisions [41] is an online interprofessional course that explores the value and complexity of human interactions around healthcare decisions and teaches health professional learners a systematic approach to person-centred care (see Fig. 2). Case-based activities, exploring patient preferences and controversies around birth care, develop professional skills that enhance patient experiences of care. Participants learn best practices and evidence-based strategies to promote respectful communication, tranform conflict, and collaborate to provide person-centred care. Legare et al. identified 54 similar programs, including case-based discussion, small group educational sessions, roleplay, printed educational material, and audit and feedback [42].
Health human rights
Findings from the current study also highlight the need for clear guidelines for providers around situations where pregnant people decline care. Some clinicians recommend having a second healthcare provider counsel the client, and documenting the informed refusal, while reassuring the client that they will continue to receive courteous, professional care regardless of their choice [4]. While these recommendations provide a good framework, it should be noted that our data suggest that involving a second care provider can be perceived by childbearing people as being “ganged up on” or being pressured to comply with recommendations, which might disrupt the care alliance between the childbearing person and their primary care provider. More importantly, Reed et al. note that women who felt bullied and coerced by care providers are more likely to report birth trauma. [30] These risks should be taken into consideration when care providers decide to involve other health professionals or family members in situations where care is declined.
Our findings confirm that clinicians need further training in supporting informed choice, and greater knowledge about health human rights [43] when clients make choices outside of standard care. Framing disrespect and abuse in response to people declining recommendations as human rights violations and gender-based violence [43] can raise awareness about the severity of these issues.
Finally, Jenkinson et al. propose a comprehensive, systems-level framework for documentation and communication with the goal of supporting people, clinicians, and health services in situations of maternal refusal [44]. Such frameworks centre the promotion of respectful maternity care, as described by Downe et al. [45]. While proactive strategies as described by DeBaets are best [39], opportunities for self-reflection and debriefing after negative encounters are important. This may provide an opportunity for people to process their labour and birth experiences, as well as for care providers to understand how disrespectful care affects childbearing people and families. Integrating respectful maternity care policies and practices into hospital settings takes time, and long-term success depends on both frequent engagement with key stakeholders and systems- and structural-level investments [45].
Limitations
The findings of this study are based on a convenience sample of childbearing people who declined maternity care recommendations in British Columbia, Canada. The sample included few people of colour and a higher proportion of midwifery clients than utilization of care by childbearing people in BC. In a study with US women, equal proportions of people of colour versus white people declined care during pregnancy or birth but white people were more likely to report that their decision was respected. [46] A sample with a higher proportion of people of colour would likely show higher rates of disrespect from care providers in response to declining care recommendations. Our study also shows that midwifery clients are more likely to decline care and a sample with a higher proportion of people under the care of physicians would likely show lower rates of declining care.
In addition, the experiences of pregnant people may be different in other provinces or countries where maternity care systems and care options are different. Another limitation of this study is that we had a single coder for the qualitative content analysis of the 1540 responses. To mitigate bias, three team assessed coder reliability for the first 200 responses to seek consensus in data categories, the final coding was guided by an experienced qualitative researcher, and final coding and the results of the analysis were reviewed and confirmed by team members with lived experience of declining care recommendations.
Future research on this topic ought to include a more ethnically diverse sample of childbearing people and add questions about what tests and procedures people wanted to decline rather than did decline.
