Providing Palliative Care to Neonates With Anencephaly in the Home Setting

Abstract

Parents who choose to carry a pregnancy complicated by a life-limiting congenital anomaly such as anencephaly may give birth to a live neonate and be discharged home. Very little guidance is available to health care professionals providing palliative care in the home setting to this population. This article is a secondary analysis that discusses the concerns and complications that parents experienced after bringing home a neonate with anencephaly. Each parental experience is a qualitative descriptive summary extracted from a larger study on the impact of anencephaly on parents. Parents reported feeling alone in their grief and struggled with their partners’ differing style of grief. Parents’ primary concerns after hospital discharge included transporting their neonate home, feeding their neonate, changing cranial defect dressings, managing pain and seizures, addressing uncertainty, and facilitating a good death. All parents received hospice services from health care professionals without perinatal bereavement training or experience. Only 1 woman received follow-up care after the death of her son. Preparing and educating health care professionals providing hospice and palliative services with perinatal bereavement training may be beneficial. Identifying and allocating local and online perinatal bereavement resources may provide parents with the tools and support necessary to facilitate healing after perinatal loss.