The ethics of perinatal care, and the experiences of families who receive such care, remains a nascent area of inquiry. It can be hard to see how existing "good death" constructs apply to the experiences of fetal patients and their families. In this paper, we explore two themes raised by a case at our fetal health center: anticipation and accompaniment. In this case, a mother presented to our fetal health center; her unborn son, our fetal patient, was diagnosed with life-threatening hypoplastic left heart syndrome and endocardial fibroelastosis. The parents were told that their son's life expectancy, upon birth, was short. For us, this case raised important questions around what sorts of things we might, together with the family, anticipate with respect to their son's birth and death, and what it meant to really accompany this family on their journey. Alongside conventional lessons in the philosophical literature and palliative care practice, the process of anticipating together and of mutual accompaniment helped us to guide this family to what they ultimately determined to be a good death for their son.
The Yale journal of biology and medicine
Anticipation, Psychological; Female; Humans; Infant, Newborn; Palliative Care; Perinatal Care; Pregnancy
end-of-life; good death; grief; neonatal death; palliative care; perinatal ethics
Moore, B. S., Carter, B. S., Beaven, B., House, K., House, J. Anticipation, Accompaniment, and a Good Death in Perinatal Care. The Yale journal of biology and medicine 92, 741-745 (2019).