The goal of this study is to better understand the current components of perinatal palliative care, and whether this model might be useful to families opting to terminate pregnancies affected by lethal/severely morbid fetal anomalies. We hypothesize that perinatal palliative care services are heterogenous, depending on their location (state) and association (affiliation with an academic center or free standing). We seek to identify perceived best practices in perinatal palliative care.
This study involves three inter-related parts. In Part 1, we will conduct structured interviews of the site managers or directors of perinatal palliative care centers to understand the services they offer, the number of individuals they serve, and their involvement in caring for families that terminate a pregnancy with a lethal/ severely morbid fetal anomaly. Part 2 is a descriptive retrospective analysis evaluating the number of individuals diagnosed with a lethal/severely morbid fetal anomaly at UC Davis Medical Center. As a tertiary referral center with all major services for women with anomalous pregnancies (high-risk obstetrics/genetics, fetal surgery, and family planning), these numbers will provide an understanding of the proportion of women who continue or terminate their pregnancies with these diagnoses, and it will give context for the applicability of our findings. In part 3, we will conduct semi-structured interviews with individuals diagnosed with a lethal/ severely morbid fetal anomaly to understand their experiences and desires for support to understand what services that might be offered through a perinatal palliative care or hospice group are priorities for families.