A post-mortem population survey on foetal-infantile end-of-life decisions: a research protocol

Abstract

BackgroundThe death of a child before or shortly after birth is frequently preceded by an end-of-life decision (ELD). Population-based studies of incidence and characteristics of ELDs in neonates and infants are rare, and those in the foetal-infantile period (> 22 weeks of gestation – 1 year) including both neonates and stillborns, are non-existent. However, important information is missed when decisions made before birth are overlooked. Our study protocol addresses this knowledge gap.MethodsFirst, a new and encompassing framework was constructed to conceptualise ELDs in the foetal-infantile period. Next, a population mortality follow-back survey in Flanders (Belgium) was set up with physicians who certified all death certificates of stillbirths from 22 weeks of gestation onwards, and infants under the age of a year. Two largely similar questionnaires (stillbirths and neonates) were developed, pilot tested and validated, both including questions on ELDs and their preceding decision-making processes. Each death requires a postal questionnaire to be sent to the certifying physician. Anonymity of the child, parents and physician is ensured by a rigorous mailing procedure involving a lawyer as intermediary between death certificate authorities, physicians and researchers. Approval by medical societies, ethics and privacy commissions has been obtained.DiscussionThis research protocol is the first to study ELDs over the entire foetal-infantile period on a population level. Based on representative samples of deaths and stillbirths and applying a trustworthy anonymity procedure, the research protocol can be used in other countries, irrespective of legal frameworks around perinatal end-of-life decision-making.

Barriers to and Facilitators of End-of-Life Decision Making by Neonatologists and Neonatal Nurses in Neonates: A Qualitative Study

“…This is because actively ending the life of a neonate is illegal within the Belgian legislation which therefore limits the possible options in such cases. Furthermore, previous studies indicate the occurrence of these active ELDs in Flanders (27) and the positive attitude of a high number of neonatal healthcare practitioners towards these types of ELDs (9). Our results can be the basis for an ethical and legal discussion about initiating legislation similar to that in the Netherlands where actively ending the life of a neonate is currently legislatively tolerated (28).…”

Components of perinatal palliative care: a systematic review protocol

“…Additionally, existing reviews on the subject of palliative care in the perinatal period often solely focus on the relatively small group of families who receive a life-limiting fetal diagnosis before birth and decide to continue the pregnancy 28,35 , hereby excluding families receiving a life-limiting diagnosis either at birth or in the neonatal period. In the majority of cases, these fetuses and neonates where a life-limiting disorder is diagnosed are in essence the same patients with similar disorders or congenital anomalies, the only difference being the occurrence of birth 5 . Additionally, the impact on parents and involved caregivers is very similar.…”

“…This is comparable with death rates reported, for instance, in the United States 4 . A life-limiting diagnosis can be made either before the child is born or after birth 5 , and is associated with a high need for comfort care in fetuses or infants 6 , emotional distress and need for support in parents 7 , and a need for guidance of healthcare providers 8 in this stressful time. In these instances, perinatal palliative care can be provided as a multidisciplinary care approach for an infant who is diagnosed with a life-limiting disease or a complex medical disease with uncertain prognosis 9 , since palliative care aims to improve the quality of life of patients and their families facing such challenges through prevention and relief of symptoms (WHO de nition 10 ).…”

Continuous Deep Sedation until Death in Neonates and Infants in Flanders: A Post-Mortem Survey

“…We included only deaths of Flemish residents to provide prevalence rates in a set population within 1 semi-autonomous region. The study design, mailing, and anonymity procedure are described elsewhere [16]; an abbreviated overview can be found in the online suppl. material (for all online suppl.…”