State of the science on perinatal palliative care

To report the state of the science since 1995 on the concept of palliative care for parents who opt to continue a pregnancy after receiving a life-limiting fetal diagnosis.

PubMed, Ovid, PsycInfo, CINAHL, and Medline were searched from 1995 to July 2012 using the terms perinatal palliative care and perinatal hospice.

Inclusion criteria included empirical studies written in English that focused on experiences of parents who opted to continue a pregnancy in which the fetus had a life-limiting condition or on perinatal palliative care. Twenty studies met inclusion criteria.

Results from empirical studies contributing to the knowledge base of perinatal palliative care are presented.

Women are confronted with powerful emotions, challenging decisions, and considerable uncertainty following the news of a life-limiting fetal anomaly. Women choose to continue their pregnancies for a variety of reasons and when doing so embark on a search for meaning. The science suggests that perinatal palliative care is welcomed by parents and is a medically safe and viable option. Women voiced positive feedback about their decisions to continue their pregnancies, and parents cited personal growth in the aftermath. Perinatal palliative care programs provide services that incorporate early and integrative care beginning in the antenatal period. A multidisciplinary coordinated approach provides parents with comprehensive, holistic support.

More research is needed to elucidate the factors that will benefit parents who continue their pregnancies. Investigating the needs and perceptions of clinicians and their willingness to participate in this new model of care is necessary as is examining barriers that may undermine care. Nurses can lead research on these topics and implement evidence-based practice grounded on study findings.