Community-Based Perinatal Palliative Care

Abstract

If community-based pediatric palliative care is in its infancy, then community-based perinatal palliative care is still in the womb. Over the past 10–15 years, there has been an explosion of home-based pediatric palliative care programs, some as an adjunct to hospital-based programs, some as a component of larger adult hospice and palliative care programs, and some as free-standing pediatric programs. Similarly, perinatal palliative care (PPC) has more recently experienced rapid growth (as this book attests to), and hospital-based programs in perinatal palliative care have now become an integral part of many pediatric palliative care programs. Although community-based perinatal programs exist, little is written on “who” they are and what exactly they do. In this chapter, we will define just what community-based PPC is, how it is distinct from hospital-based PPC, and what it can bring to families with fetuses in peril. We will illustrate this highlighting data and real-life stories based on our own experience through CompassionNet, an Upstate New York community-based PPC program.