Action to Transform Health Care Around Pregnancy Loss

In Canada, nearly a quarter of all pregnancies end in miscarriage, which is a staggering ratio considering the lack of concern and attention miscarriages garner in health care (Tuyl, 2024). Despite such a high occurrence, there are insufficient resources available for women who experience miscarriages, and a general lack of scientific inquiry into the reason for their occurrence (Tuyl, 2024). These conditions are echoed around the world, with studies and reviews published in international journals about the high prevalence of pregnancy loss worldwide, as well as the associated psychological issues following pregnancy loss that are misunderstood and undertreated globally (Romney et al., 2021). For such a frequently occurring condition with significant psychological, social, and physical impacts on the patient to be so systematically ignored in health care, exploration of the issue and action is warranted to improve healthcare delivery for women, and their partners, experiencing miscarriage. The purpose of this paper is to understand how the dominant paradigm of silencing around pregnancy loss is affecting healthcare delivery for those experiencing it and propose action that can be taken to reshape the discourse and promote equity in care delivery for those individuals. This paper is written from a critical theory perspective which questions existing systems and discourses that marginalize and silence individuals; instead, offering insights toward reframing how society views pregnancy loss and promoting equity-driven initiatives for change.

Silencing Discourse

The predominant discourse on pregnancy loss is one of silencing, which influences the social and systemic decision making around healthcare delivery for those experiencing pregnancy loss. Discourse influences the way individuals engage with each other and the beliefs they carry. These are driven by the language used to discuss topics, and it inherently limits individuals’ actions and access to resources in the system (van Dijk, 1993). Since discourse shapes perception, beliefs and behaviors, in the context of pregnancy loss, the silencing discourse has led to the alienation of those experiencing pregnancy loss and minimization of their feelings (Romney et al., 2021). The form of grief that is experienced after pregnancy loss is termed “disenfranchised grief”, meaning that it is not a socially acceptable type of grief; it is unacknowledged, misunderstood, and there is no guidance for how to socially address this type of grief (Romney et al., 2021). For the non-pregnant partner, grief after pregnancy loss is even more minimized and unexpected, as the dominant discourse shapes them into the protective or supportive role, not giving any consideration to the fact that they may be so emotionally impacted by the experience that they could need support themselves (Romney et al., 2021; Gershfeld-Litvin, Ressler & Yossef, 2023).

The traditional stages of grief are complicated in pregnancy loss because of the associated discourse on unborn fetuses shaped by policy and legislature as a power structure that shapes the societal discourse (van Dijk, 1993). For example, in the United Kingdom, legally, a fetus is not considered a person, since personhood hinges on the actual birth, which would not be experienced in the case of pregnancy loss (Middlemiss, 2021). The social conceptualization of grief is in response to death of a living person, which renders grief void and misunderstood in the case of pregnancy loss where the lost subject was not socially considered alive in the first place. Discourse around pregnancy loss is therefore established by a variety of power structures and embedded within the various systems of our society. While the silencing discourse establishes social beliefs that individuals experiencing pregnancy loss should not mourn openly and are not experiencing profound psychological stress, research consistently shows the contrary to be true of the lived experiences of these individuals. Couples experiencing pregnancy loss are experiencing grief and mourning, but they struggle to find the resources to cope with their grief, are unsupported by their social networks who do not know how to engage in a different discourse (Romney et al., 2021).  These societally upheld beliefs about pregnancy loss permeate into various institutions of society, including healthcare, where the silencing discourse sustains the lack of healthcare resources and ineffective healthcare delivery for these patients.

Effects on the Healthcare System

The discourse of silencing and disenfranchised grief of those experiencing pregnancy loss has impacted healthcare delivery by shaping the medical inquiry into pregnancy loss, the available resources for patients, and the attitudes and behaviors of healthcare providers. Pregnancy loss in healthcare is understood from a strictly biomedical perspective, with terminology like reproductive loss and fetal demise commonly used (Andipatin, Naidoo & Roomaney, 2019). Most of the time, pregnancy loss is considered to have no knowable cause; it is considered a rather normal occurrence that sometimes does happen. While there are a multitude of known factors that can increase the chance of it occurring, there is a lack of inquiry into why it happens for any given individual (Tuyl, 2024). In some countries including Canada, from a medical standpoint pregnancy loss before 20 weeks gestation does not warrant investigation unless it happens to a person three times in a row (Tuyl, 2024). This is concerning considering both the psychological toll incurred by multiple pregnancy losses in a row as well as the impact on psychological recovery of not knowing why it happened (Tuyl, 2024). It appears, then, that the general sentiment of medical inquiry is to ignore the problem of pregnancy loss until it is so recurrent for a patient that it must then be investigated, which is a sentiment sustained by the silencing discourse. The lack of understanding why patients experience pregnancy loss is also layered with a lack of resources to treat, address, or support recovery from that experience. The silencing discourse, then, does not impact only the patients whose experiences are minimized; it impacts the perspective by which medical inquiry is undertaken, the structures put in place by healthcare providers to address the issue, and the way in which providers interact and communicate with these patients.

Emergency departments are one of the clinical areas that frequently see patients experiencing pregnancy loss, particularly in the early stages of pregnancy (Dainty et al., 2021). As a nurse in the emergency department, I have become increasingly aware of the influence of the dominant discourse on pregnancy loss on my practice, and that of other healthcare providers. The sentiments described in literature accurately reflect the reality of working in healthcare; pregnancy loss is normalized and routine occurrence. Patients often present with typical symptoms of vaginal bleeding and suprapubic or lower abdominal cramping, for which we complete blood work to assess the hemoglobin level and pregnancy hormone level, and the patient undergoes an ultrasound to visualize the fetus and locate a fetal heartbeat. Following an ultrasound that reports fetal demise or no fetal activity detected, the doctor relays the news to the patient, the nurses offer the patient a booklet on pregnancy loss, and the patient is discharged if they are otherwise stable and there are no further complications.

In complicated cases, they receive a referral to a gynecologist for further treatment of their physical complications. However, there is almost no attention to the patient’s mental wellbeing aside from a standardized small booklet explaining pregnancy loss and general tips for managing emotions, which the patient is often too distraught to read at the time anyway. The process is severely lacking in empathy, and the silencing discourse is pervasive even among healthcare providers like nurses, who are trained in therapeutic communication and compassionate holistic care delivery (Dainty et al., 2021; Lepinski, 2022). Somehow, that training in therapeutic intervention is not applied toward managing a patient experiencing pregnancy loss and there is a cultural understanding that we do not engage with these patients in the way we would engage with someone who lost a loved one. Instead, we are ethically at odds with the mandates of our profession as nurses, as we meet these patients with invalidating silence about their experience, and we do not know how to bridge the taboo gap (Palmer & Murphy-Oikonen, 2019).

The flow of emergency departments in Canada, as well as the chronic staffing challenges and surplus of patients that make rooms a valuable commodity, are contributing to the issue as well (Palmer & Murphy-Oikonen, 2019). To properly address the psychological complications associated with pregnancy loss, allowing patients time to grieve and express themselves, and offering counseling, is essential; however, the rapid flow and urgency of emergency departments does not prioritize these efforts enough to offer sufficient space for them. Nurses, consequently, are task-driven, leading to unintentionally uncompassionate and unempathetic behaviors (Dainty et al., 2021; Palmer & Murphy-Oikonen, 2019). The process of flowing patients experiencing pregnancy loss through the emergency department is so systematic and biomedical that there is minimal, if any, therapeutic relationship building between the patient and the provider. Consequently, the patient experience is to feel invalidated, minimized, and sometimes even feeling like a burden or inconvenience to the healthcare providers who perceive the patient’s pregnancy loss as normal rather than psychologically traumatic as the patient experiences it (Lepinski, 2022). This is the experience of the pregnant patient, but for their non-pregnant partner, the issue is even further exacerbated by the fact that they are essentially ignored throughout the entire process. Often, this non-pregnant partner is the father, but even in non-heteronormative partnerships, the experience for the non-pregnant partner is even more inequitable, as not only is their potential grief ignored, but they are expected to take a supporting role to manage the pregnant partner’s potential grief (Gershfeld-Litvin, Ressler & Yossef, 2023). While on the surface the issue of silencing around pregnancy loss may appear to be a women’s issue, as the biological child bearer, its impacts are actually extensive: sustaining practices of ineffective healthcare delivery, stifling therapeutic communication between patients and providers, and psychological impacts for the non-pregnant and pregnant partner alike.

Taking Action Toward Equity

            Many hospitals around Canada have recognized the need for more equitable care delivery for patients experiencing pregnancy loss: care that goes beyond the medicalization of the experience, and that instead offers a sensitive, compassionate approach (Palmer & Murphy-Oikonen, 2019). However, the implementation of discipline-specific initiatives remains a challenge, especially as emergency department staff also frequently report that they are dissatisfied with the subpar care their pregnancy loss patients are receiving, but that they are unable to overcome the barrier of the existing discourse (Palmer & Murphy-Oikonen, 2019). In order to achieve more equitable care for patients experiencing pregnancy loss, emergency departments should implement the following two changes to their flow for these patients: consultation of social work from triage, and provision of a private room to grieve.

            Evidence shows that when women experiencing pregnancy loss receive combined treatment to both psychologically manage their grief experience as well as treat their physiological medical event, they report significantly better outcomes in recovery after the event (Palmer & Murphy-Oikonen, 2019). The key issues women experiencing pregnancy loss report as patients in the emergency department is the long wait to get an ultrasound to confirm their loss, the lack of knowledge of pregnancy loss without anyone to explain it to them in detail, and the lack of compassionate interactions during the entire process (Palmer & Murphy-Oikonen, 2019). Most hospitals in Canada have designated social workers for their emergency departments, particularly those in urban regions; social workers would be a beneficial discipline to leverage in improving access to care and knowledge for patients experiencing pregnancy loss. In fact, some researchers suggest that social work is actually the best suited discipline to provide this kind of support to these patients (Palmer & Murphy-Oikonen, 2019). Instead of funneling pregnancy loss patients through the emergency department alongside a myriad of other patients, a social worker should be consulted for these patients directly at triage. The social worker could then accompany the patient to the next waiting zone and explain to them what they can expect during their hospital visit, and begin the process of setting up follow up support for when the patient is discharged from the hospital. In this way, the patient would have access to knowledge and information, as well as care from an individual specialized in prioritizing psychosocial well-being and trauma-informed care (Palmer & Murphy-Oikonen, 2019).

While implementation of this social work consult appears simple, there are actually a multitude of factors to be considered and stakeholders that would need to be involved, including financial resources to fund 24-hour social workers, existing caseload burden of the social worker, and the need for interprofessional collaboration to ensure social workers are actively consulted (Palmer & Murphy-Oikonen, 2019). Unit managers and professional practice leaders would be key stakeholders to involve, in order to ensure that triage nurses are covered by policy to place social work consults and trained appropriately to ensure they can screen for the need for a social worker. As a triage nurse, I view this initiative to be feasible, realistic, and sensible during the hours which social workers are available, but it would require data-based advocacy for extending funding for social work to 24-hour coverage. The implementation of this initiative, though, if proven effective during the existing social work hours, could make a strong case for increasing their coverage to ensure that patients receive equitable care: the resources they need based on their individual circumstances and able to remove barriers in the delivery of compassionate care.

            Another key initiative emergency departments can implement to improve equity of care delivery for patients experiencing miscarriage is to provide private rooms for these patients to receive the news of miscarriage and to grieve their loss. Not unlike the previous initiative, this also seems like a simple fix on the surface; however, on numerous occasions, patients experiencing pregnancy loss receive the diagnosis of miscarriage by a physician in an open space with several other staff and patients milling about. On numerous other occasions, nurses are pressured to flow patients out of rooms for the next patient to be seen, including patients actively grieving after receiving news of a miscarriage. The initiative of ensuring patients experiencing pregnancy loss are in a private room to receive the news, and able to remain in the room to allow them time to grieve would be coupled with the social work consultation mentioned, to provide the psychosocial support and resources they may need in that moment (Palmer & Murphy-Oikonen, 2019; Dainty et al., 2021). The time slot could be predetermined, such as a maximum of 45 minutes to ensure that the flow of the entire zone is not drastically impeded and other patients are not being delayed critical care; however, it would be valuable as a means of demonstrating compassion. This initiative would also require stakeholder involvement of unit managers to approve the flow, physicians to ensure private diagnosis communication, and nurses to facilitate the flow. This initiative will be a step toward emergency departments reframing the way pregnancy loss is perceived and understood. However, subsequent to its implementation, emergency departments will need to build capacity among staff through improved education on the impact of holistic care delivery for these patients to ensure that there is staff buy-in into the new flow and prioritization of the psychosocial component of care for pregnancy loss (Palmer & Murphy-Oikonen, 2019; Dainty et al., 2021).

          Conclusion

            Pregnancy loss is a significantly more frequently occurring issue than most people are aware of, especially in North America; yet, it is poorly understood within the field of medicine and socially dismissed as a taboo topic of discussion (Dainty et al., 2021). Society has built a discourse of pregnancy loss that is silencing those experiencing it, and it is a pervasive perception of pregnancy loss even within health care. Patients experiencing pregnancy loss in emergency departments report their needs are not being addressed and a sense that their event of pregnancy loss is not viewed as significant. For the patient, however, pregnancy loss is a complex psychological and physical process that requires psychosocial support, which is severely lacking from health care providers. In order to change this narrative of pregnancy loss and take action to improve equitable access to health care for these patients, two initiatives have been proposed for emergency departments to implement. Firstly, emergency departments should consult a social worker directly from triage to facilitate access of patients experiencing pregnancy loss through the healthcare system. Secondly, emergency departments should modify their flow of patients to ensure that patients experiencing pregnancy loss receive their diagnosis in a private room and are able to remain in that room, with social work support, to grieve. Evidence shows that a combination of psychosocial and physical treatment results in the best outcomes for patients experiencing pregnancy loss, in order to empower and enable them to mourn their loss and receive the appropriate support to move forward. The healthcare system, however, needs to catch up with this evidence, and these initiatives could be the first steps toward an equitable future for these patients.

References

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Romney, J., Fife, S. T., Sanders, D., & Beh, S. (2021). Treatment of couples experiencing pregnancy loss: Reauthoring loss from a narrative perspective. International Journal of Systemic Therapy 32(2): 134-152. DOI: 10.1080/2692398X.2020.1855621

Tuyl, R. V. (2024). Improving access, understanding, and dignity during miscarriage recovery in British Columbia, Canada: A patient-oriented research study. Women’s Health 20: 1-12. DOI: 10.1177/17455057231224180