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, close to half of participants declined care at some point during pregnancy, birth, or the postpartum period (46%), 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%) (15). 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 (16). 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. (17)The authors of the Cochrane review acknowledge the challenges of communicating evidence about EFM to pregnant people, so they can make an informed decision ‘without compromising the normality of labour’. 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. (18)
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 recommendation, so that people have time to understand different procedures, and an opportunity to consider their options. This is especially important for childbearing people who might not know their birth provider, or if they have a known provider with whom they have not developed a positive and trusting care alliance.
In the current study, feeling pressure from maternity care providers led to feeling vulnerable and invisible and resulted in loss of autonomy. Pregnancy, childbirth, and the postpartum period are a critical emotional and transitional period in a person’s life. Evidence confirms that a lack of involvement in decision-making about care results in negative patient experiences (19, 20). 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 (21). In an analysis of the full Changing Childbirth in BC dataset with 2051 childbearing people from British Columbia Vedam et al. (22) 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 (15).
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 (23). In another study with 2192 women from the Netherlands who described their birth as traumatic, loss of control and fear for the baby’s life were the two most commonly reported reasons that 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 (24). 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.
Our findings also echo results from other studies about care provider behaviours and interactions. Reed et al. surveyed 748 women in Australia who described a traumatic birth experience (25). 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 (26) and are linked to decisions to avoid contact with the healthcare system in future pregnancies (27).
Care providers are also affected. Midwives and physicians who witnessed abusive care felt moral distress and were at increased risk for post-traumatic stress symptoms. (28, 29) These negative experiences in turn contribute to burnout, which is linked to attrition of care providers and provision of lower quality care (30). These studies highlight the negative impact of witnessing disrespect and abuse among care providers and the indirect impact on patients, making a strong case for the need to eradicate disrespectful and abusive care provider behaviours through education, professional codes of conducts, hospital policies, collection of accountability metrics, remediation and sanctions. Framing disrespect and abuse in childbirth as human rights violations and gender-based violence (31) raises awareness about the severity of these issues and the importance of zero tolerance when it comes to mistreatment of childbearing people.
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 (20). 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 in some (emergency) situations (32). The higher risk of mistreatment during emergency situation 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. (33).
In our 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 (34). 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” (35). 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 (6).
One of the main findings from our analysis was the importance of being informed about test and procedures and feeling supported by care providers when making decisions. 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 known that knowledge is power and that there are inherent power imbalances in the provider-patient relationship. (36) 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 was 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. (36)
Implications for practice and health professional education
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 (37). Michelle DeBaets notes that the use of birth plans are encountered with hostility by some care providers who regard them as “uninformed and unrealistic” (37). Childbearing people make written birth plans to ensure their wishes and preferences are respected, but as confirmed by our data, this is often not the case. This appears contradictory as health systems often require written consents for procedures from the patient. As an alternative to birth plans, the author 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. During early prenatal appointments, care providers are encouraged to share their own birth philosophies and practices with clients, while developing an understanding of the preferences and expectations of clients (37). An extended prenatal visit is then recommended between 34–36 weeks to discuss the client’s values, preferences, and expectations for the birth. This enables the provider to understand what matters most to the childbearing person, find out what their fears and expectations are, and discuss options in the context of the client’s medical history. This is most valuable if the prenatal care provider will also be the provider attending the birth. A central feature of the birth partnership is mutual education about choices and the “values that inform those choices” (37). 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, steering people towards high-quality evidence and away from lower quality sources of information, as well as discussing options ahead of time The author also offers important guidance for obstetric teams, especially for teams with differences in birth philosophy and practices, so that they can provide consistent and respectful care to clients (37).
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 (2). 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. (25) 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 (31) when clients make choices outside of standard care. Efforts to identify and reach consensus about quality criteria and professional competencies for applying person-centered decision-making in maternity care have been published (38). Several training programs in shared decision-making and person-centered decision-making for healthcare providers exist. Effective person-centered care requires developing partnerships with patients, and skillful communication among healthcare providers of all disciplines. For example, Dialogue and Decisions (39) is an online interprofessional course explores the value and complexity of human interactions around healthcare decisions curricula 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-centred care and improve interprofessional team functioning in the workplace. Trainees become familiar with the roles and scopes of practice of various types of health providers, as well as the skills, equipment, and personnel needed to care for childbearing families across homes, rural health centres, and hospitals. They learn best practices and evidence-based strategies to promote communication, teamwork, conflict resolution, and collaborative leadership across settings and across disciplines. Legare et al. identified 54 similar programs, including case-based discussion, small group educational sessions, roleplay, printed educational material, and audit and feedback (40). The authors conclude that there is a need to determine which programs are most effective.
Additionally, Jenkinson et al. propose a comprehensive, woman-centered, systems-level framework for documentation and communication with the goal of supporting people, clinicians, and health services in situations of maternal refusal (41). Such frameworks centre the promotion of respectful maternity care, as described by Downe et al. (42). While proactive strategies as described by DeBaets are best (37), 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 (42).
Limitations
The findings of this study are based on a convenience sample of childbearing people who declined maternity care recommendations in British Columbia, Canada. While the sample was geographically and socio-economically diverse, it included few people of colour and a higher proportion of midwifery clients than would be found in the population of childbearing people in BC. In addition, the experiences of pregnant people may be different in other provinces or countries where maternity care systems and care options are different.
Future research on this topic ought to include a more diverse sample of childbearing people and add questions about what tests and procedures people wanted to decline rather than did decline. Some people might not have felt comfortable declining care, especially during labour and birth. Research with more than 2000 women with a traumatic childbirth experience shows that 16.5% reported that the birth trauma might have been prevented if they had refused an intervention (24).