Getting the ‘Comfortable’ to listen: a mixed methods study of refusal of recommended maternity care

Abstract

Background: The right to refuse medical treatment, held by all competent adults and unaltered by pregnancy status, is a central tenet of respectful maternity care. This right is well established in case law, midwifery and obstetric ethical guidance and health policy. However, when pregnant women decline recommended care, concerns about maternal and fetal safety can lead to conflict. Clinicians may feel their own autonomy is challenged and also grapple with ethical and medico-legal concerns. Processes to guide clinicians when women decline recommended care are rare and unstudied. Aim: This thesis set out to support women’s rights in maternity care by investigating the research question: Could a documentation and communication process support pregnant women’s rights to decline recommended maternity care? Methods: A sequential, explanatory mixed-methods study was undertaken in a Brisbane (Australia) tertiary maternity hospital where a structured process, the Maternity Care Plan (MCP), had been established to guide communication and documentation when women declined recommended care. The first stage of the study was quantitative and mapped the scope and use of the MCP process via a retrospective cohort study of women with MCPs. Results of the quantitative stage then informed selection of participants for the qualitative phase of the study which involved thematic analysis of in-depth semi-structured interviews with women, midwives, and obstetricians. Within the qualitative phase, two layers of thematic analysis were undertaken. The first layer of thematic analysis was descriptive, and focused on participant’s experiences of the MCP process, while the second layer applied a more critical and feminist lens, foregrounding the underlying values and attitudes that drove care when pregnant women declined to follow professional advice. Findings: The retrospective cohort study included 52 women with MCPs and concluded that the MCP process enabled clinicians to provide care outside of hospital policies but was used rarely, for a narrow range of situations and with significant variation in its application. These results were then followed up in interviews with nine women, twelve midwives, and nine obstetricians. The descriptive thematic analysis of interviews found that obstetricians felt protected and reassured by the structured documentation and communication, while other clinicians felt reassured by the perception of obstetric authorisation. This, in turn, protected women’s access to maternity care. However, inconsistencies in the implementation of the MCP process, and fragmented care, diminished both the utility of the process and women’s access to it. While the MCP process provided a symbol of respect for maternal autonomy, the larger forces of patriarchy and medical hegemony remained largely unchallenged. The feminist thematic analysis then identified both supportive and punitive interactions between women and clinicians, depending on whether the woman’s birth intentions were perceived by individual clinicians to transgress norms of patienthood and motherhood. Key conclusions and implications: Although the MCP process was only partially and indirectly successful in supporting women’s right to refuse recommended care, a refined process has the potential to be woman-centred and effective. A new process, termed the ‘Personalised Alternative Care and Treatment’ (PACT) planning process, could provide a systems-level response to situations where women decline recommended care. The policy, practice, education and research measures that would underpin the PACT planning process are described, including the incorporation of the woman’s own account into documentation, establishing flexible pathways to initiate the PACT process and adding the failsafe of a Respectful Maternity Care Advocate. Additional research is now needed to assess the acceptability and utility of the PACT process.