Guest Blogger: Allison M. Whelan*
So much of the political and legal debate about reproductive choice centers on abortion. In doing so, these debates obscure so many other reproductive choices women must make. And the choices are not easy—and the stakes are even greater in an era where any prenatal missteps might lead to aggressive state action, including criminal sanctions. There are thorny situations that confront medicine and ethics. For example, how should we think about families that choose to carry terminal fetuses to delivery only for the fetus to expire shortly after birth? Should such pregnancies be terminated early given that doctors and even the intended parents know the fetus will not survive? Where does the law stand on such issues? What is morally permissible?
Thousands of women and families face lethal prenatal diagnoses and perinatal loss every year. In 2006, there were 25,972 reported fetal deaths at twenty weeks or later. An additional 19,041 live-born infants died at less than twenty-eight days. Birth defects such as congenital malformations and chromosomal abnormalities are the leading cause of fetal-infant deaths. Lethal anomalies (i.e., Trisomy 13; anencephaly; hypoplastic left heart syndrome) are a subset of birth defects characterized by a radically shortened lifespan. In 2005, there were 6,925 fetal and infant deaths attributable to lethal anomalies in the U.S.
Advancements in prenatal diagnosis coinciding with improved access to legal abortions create medical options for patients, but also spur challenging ethical questions. For example, therapeutic abortions have become the “management of choice” for many women whose fetuses experience a “lethal condition”. However, termination may not be the preferred choice for all women and families. The concept of perinatal hospice fills this void and offers women valid options after a terminal fetal diagnosis. Although the concept is still relatively novel and unknown in much of the health profession and lay population, the development of perinatal hospice programs is growing.
Perinatal hospice is worth taking seriously. For example, perinatal hospice programs are multidisciplinary and their services begin at the time of diagnosis (rather than death), in recognition of “anticipatory grief,” a term describing the grieving process that begins prior to death when a death is probable or imminent. Those who have used these services say that perinatal hospice provides a supportive environment for parents to grieve and appreciate any time they have with their infant. Further, they say It affirms their role as parents and acknowledges that their loss is “as real” as the loss of any other loved one. Maybe perinatal hospice is a safe place where parents can “be parents.” It’s worth thinking about.
*Allison Whelan is a graduate student, University of Minnesota School of Law and Center for Bioethics