Time to change Canada’s stillbirth definition and regulatory framework

Key points

• The current definition of fetal death and stillbirth in Canada substantially inflates Canadian stillbirth rates compared with those of other countries.

• Outdated regulatory processes associated with stillbirth registration compromise patient care and burden health care systems in Canada.

• Spontaneous fetal deaths at 20 weeks’ gestation or later should require registration as vital events, and fetal deaths resulting from iatrogenic pregnancy termination should be treated as medically notifiable events.

• All legal and regulatory processes required of patients who experience a pregnancy loss, pregnancy termination, fetal death, or stillbirth should be tailored to ensure that individual patient well-being is optimized.

The definition and criteria used for reporting stillbirths in Canada are idiosyncratic and dated, and directly responsible for the country’s artificially high and rising stillbirth rate (when compared with rates in other high-income nations). More importantly, bureaucratic processes associated with stillbirth add substantially to the grief experienced by people who have suffered such a pregnancy loss. We highlight the problems associated with Canada’s current definition and reporting criteria for stillbirth, discuss how these affect patients and health care workers, and suggest potential solutions.

In 1950, the World Health Organization (WHO) first defined fetal death as “death prior to the complete expulsion or extraction from its mother of a product of conception, irrespective of the duration of pregnancy; the death is indicated by the fact that after such separation the fetus does not breathe or show any other evidence of life … .”¹ This definition, with stillbirth providing evidence of (intrauterine) fetal death, has been rendered obsolete in recent decades by advances in technology. Fetal death is now routinely and definitively diagnosed by demonstrating the absence of cardiac activity through radiologic imaging of the fetal heart. Additionally, widespread uptake of prenatal diagnosis and pregnancy termination for serious congenital anomalies, and selective reduction to improve prognosis in multi-fetal pregnancy has resulted in higher rates of iatrogenic fetal death.

Canada’s stillbirth rate is more than double that of comparable high-income countries and rising, in part because of stringent stillbirth registration criteria. Although the rationale for determining stillbirth reporting criteria is based on the concept of fetal viability, no international standard exists. Whereas the WHO recommends reporting of fetal deaths with a birth weight of 500 g or greater or a gestational age at birth of 22 weeks or greater,¹ Canada requires the registration of all fetal deaths with a birth weight of 500 g or greater or a gestational age of 20 weeks or greater,² and the Netherlands and the United Kingdom report only stillbirths with a gestational age of 24 weeks or greater.^3–5

However, a key contributor to Canada’s international outlier status is the inclusion in stillbirth counts of fetal deaths that follow late termination of pregnancy (at 20 to 24 weeks’ gestation).^3–5 Widespread uptake of prenatal diagnosis and, consequently, in terminations of pregnancy for serious congenital anomalies has meant that late fetal deaths (at ≥ 28 weeks’ gestation) and infant deaths have substantially reduced in recent decades.⁶ Yet these terminations undertaken at 20 to 24 weeks’ gestation are included in Canada’s stillbirth counts.^3–5 Current WHO recommendations advocate for the exclusion of terminations of pregnancy from stillbirth counts.⁷ Countries such as Denmark, Finland, Italy, Norway, Sweden, and the United States simply exclude all such cases from their counts, and the use of a 24 weeks’ gestation registration threshold similarly results in the exclusion of virtually all such terminations in the statistics of countries such as the Netherlands and United Kingdom.^3–5

Under Canada’s antiquated stillbirth definition, fetal deaths from selective reduction of 1 or more fetuses in multi-fetal pregnancies are also — and egregiously — included in stillbirth counts. Selective fetal reduction is designed to improve prognosis in high-risk, higher-order multi-fetal pregnancies by converting them to lower-risk twin or singleton pregnancies.⁸ Although the procedure is carried out at 10 weeks’ gestation, the reduced fetus requires registration as a stillbirth in Canada if the pregnancy ends at 20 weeks’ gestation or later, distorting Canada’s stillbirth rates. Moreover, the requirement mars the parental joy associated with successful live birth(s) following selective reduction owing to requirements for parental involvement in stillbirth processes for the fetus terminated months previously.

Beyond distorted statistics, outdated processes associated with the registration of stillbirth in Canada may be traumatizing, culturally insensitive, or, at the very least, unkind. The contemporary laws and regulations of several provinces and territories require parents to complete a stillbirth registration form soon after stillbirth, modelling the process for registering livebirths. Unlike death registration, which is deemed a physician responsibility, the requirement for parents to register stillbirth reflects a bygone era when the impact of pregnancy loss was typically minimized. Traumatized patients may leave hospital without completing registration and other procedures that would amplify their emotional and psychological distress. Patients seeking abortion due to personal, social, or traumatic circumstances — for example, pregnancies resulting from sexual assault — experience added distress when required to comply with stillbirth registration and funeral home mandates. Furthermore, the current processes perpetuate systemic cultural insensitivity by dismissing the deeply personal and diverse ways individuals and communities process grief. Current legislation also conflicts with the constitutionally protected rights of Indigenous Peoples, particularly in relation to ceremonial practices and culturally specific burial traditions.⁹

Stillbirth-associated processes mandated by law can be emotionally burdensome even to care providers. Prescribed protocols require hospital staff to make repeated attempts to contact patients who have left hospital without completing stillbirth-related requirements and, if unsuccessful, prepare formal reports detailing the events. Provinces and territories also mandate various legal and regulatory procedures for dealing with the “abandoned remains,” including arrangements with the funeral home for internment or cremation and the late filing of a stillbirth registration with the Vital Statistics Registrar.

Hospitals often develop mitigation strategies to address the conflict between patient needs and legislated requirements. The most effective workarounds typically involve prioritizing patient care and disregarding procedures and policies, which highlights the disconnect between policy mandates and practical realities. The required stillbirth-associated processes and workarounds also have financial and other resource implications for hospitals that arise from the additional services required of social workers, nursing staff, and the hospital’s pathology department and morgue.

National criteria for registration and reporting of spontaneous fetal death should be updated to reflect modern medical realities, and to optimize preventable fetal death surveillance. Iatrogenic pregnancy termination should be treated as a medically notifiable event (requiring reporting by physicians, as for notifiable diseases), especially as such cases are increasingly critical for congenital anomaly surveillance. All processes associated with loss or termination of pregnancy, fetal death, and stillbirth should be carefully scrutinized by partners within the perinatal care community and modified to ensure that individual patient well-being is optimized. ^10,11 Unfortunately, these longstanding concerns have remained unaddressed by the federal agencies expected to provide leadership (e.g., the Public Health Agency of Canada and Statistics Canada). Ministries of health and reproductive and perinatal care programs in the provinces and territories must advocate for a standardized national framework and policies that will address this vital aspect of women’s health care in Canada, in order to restore Canada’s international reputation in the perinatal health realm.