Parental decision-making following a prenatal diagnosis that is lethal, life-limiting, or has long term implications for the future child and family: a meta-synthesis of qualitative literature

Abstract

Background Information on the factors influencing parents’ decision-making process following a lethal, life-limiting or severely debilitating prenatal diagnosis remains deficient. A comprehensive systematic review and meta-synthesis was conducted to explore the influencing factors for parents considering termination or continuation of pregnancy following identification of lethal, life-limiting or severely debilitating fetal abnormalities. Methods Electronic searches of 13 databases were conducted. These searches were supplemented by hand-searching Google Scholar and bibliographies and citation tracing. Thomas and Harden’s (2008) thematic synthesis method was used to synthesise data from identified studies. Results Twenty-four papers were identified and reviewed, but two papers were removed following quality assessment. Three main themes were identified through systematic synthesis. Theme 1, entitled ‘all life is precious’, described parents’ perception of the importance of the fetus’ life, a fatalistic view of their situation alongside moral implications as well as the implications decisions would have on their own life, in consideration of previous life experiences. Theme 2 (‘hope for a positive outcome’) contained two sub-themes which considered the parent’s own imagined future and the influence of other people’s experiences. Finally, Theme 3 (‘a life worth living’) presented three sub-themes which may influence their parental decision-making: These described parental consideration of the quality of life for their unborn child, the possibility of waiting to try for another pregnancy, and their own responsibilities and commitments. Conclusion The first review to fully explore parental decision-making process following lethal, life-limiting, or severely debilitating prenatal diagnosis provided novel findings and insight into which factors influenced parents’ decision-making process. This comprehensive and systematic review provides greater understanding of the factors influential on decision-making, such as hope, morality and potential implications on their own and other’s quality of life, will enable professionals to facilitate supported decision-making, including greater knowledge of the variables likely to influence parental choices.

Fostering Vicarious Resilience for Perinatal Palliative Care Professionals

“…When interviewed about the barriers and challenges to keeping a cohesive and effective palliative care team together, the medical director of the Perinatal/Pediatric Hospice Program at The Elizabeth Hospice and a family practice in San Diego, Dr. George Delgado, said the “challenges include emotional stress, compassion fatigue, ethical dilemmas, and cost-cutting across healthcare.” From his experience most of the conflicts are ethical, extending from contrasting societal philosophical axioms influencing healthcare, which can leave professionals in an ideological betwixt and between in the delivery of care. Ethical dilemmas not only surround the termination of a live fetus but also accompany the initiation and continuation of life-sustaining treatments that can be perceived as a prolongation of suffering and an exercise in futility for an infant bound to die ( 24 , 26 , 27 ). Both options are indicated as palliative options on the spectrum of services for those diagnosed with life-limiting fetal malformations by the American College of Obstetrics and Gynecology ( 14 ).…”

Perinatal Palliative Care Birth Planning as Advance Care Planning

“…These factors include maternal age and medical history, religious beliefs, cultural values, severity of anomalies, expected prognosis, gestation at diagnosis, and socioeconomic status (25)(26)(27)(28). Additionally, many families consider the worth of their baby, potential quality of life, and personal ethics in the context of the known information (29)(30)(31). Several studies have shown the impact of religion on decisions for pregnancy continuation and decisions regarding care after delivery (32,33).…”

Decisions Parents Make When Faced With Potentially Life-Limiting Fetal Diagnoses and the Importance of Perinatal Palliative Care

“…For example, some families will want specific spiritual care or ceremonies after birth to honor their faith. But there are also some universal themes (22). Janvier et al found that among families with children who lived with Trisomy 13 or 18, there were "common hopes to bring their child home, give their child a good life, and be together/a family" (23).…”