Accompanying the Terminally Ill Infant: A Scripture-Based Art of Dying for Perinatal Hospice
Mariele Courtois, Ph.D. student in Moral Theology, Catholic University of America
Continual improvements in prenatal testing and genetic screening detect many life-limiting conditions that still have no treatment or cure. Where is meaning in the death of a life who barely began? This is the unique struggle and source of suffering for a family who is told that their baby will live a short life. One of the ways that bioethicists – especially Christian bioethicists – attempt to resolve questions of how to approach death is by recovering the ars moriendi tradition and reinvigorating it for modern concerns. The ars moriendi developed in the late medieval period. According to this art, dying poorly entails a lack of perseverance to remain in God’s grace until one’s soul leaves one’s body. Dying well entails activity ordered to God’s will, contemplation devoted to the love of God, and a spiritual purity in which one would remain reliant on and trusting of God even through the end of life. Modeling Christ as an exemplar for how to die well can be an important way for Christians to find meaning in death.
Another response to problems regarding the preparation for death and the process of dying is the hospice movement, which was started by Cicely Saunders in the 1950s. Perinatal hospice translates hospice and palliative care for neonatology. These programs are a novel way that hospitals attempt to improve care for the smallest of dying patients and to help parents confront the death of their new child. Though perinatal hospice presents advantages for the family who decides to continue a pregnancy despite poor prognosis for the child, it can encounter difficulties from the perspective of the ars moriendi.
To improve the experience of perinatal hospice, families can benefit from an ars moriendi suited to their context. The fact that an infant cannot intentionally prepare for death presents a difference between her or his experience of death and that depicted by the traditional ars moriendi. Yet, there are still resources from the ars moriendi to benefit both the child and the family. This is because there are two sides to the agony of the passion: that of Christ and that of His followers who walked with Him. To begin to provide a family-based ars moriendi for the dying infant, I propose clinical recommendations – based on stories from the Gospels – that facilitate the opportunity to celebrate the child’s birthday, to contemplate death, to understand the role of accompaniment, and to preserve memories. The ars moriendi can assist in developing an art of perinatal hospice done well.
Another response to problems regarding the preparation for death and the process of dying is the hospice movement, which was started by Cicely Saunders in the 1950s. Perinatal hospice translates hospice and palliative care for neonatology. These programs are a novel way that hospitals attempt to improve care for the smallest of dying patients and to help parents confront the death of their new child. Though perinatal hospice presents advantages for the family who decides to continue a pregnancy despite poor prognosis for the child, it can encounter difficulties from the perspective of the ars moriendi.
To improve the experience of perinatal hospice, families can benefit from an ars moriendi suited to their context. The fact that an infant cannot intentionally prepare for death presents a difference between her or his experience of death and that depicted by the traditional ars moriendi. Yet, there are still resources from the ars moriendi to benefit both the child and the family. This is because there are two sides to the agony of the passion: that of Christ and that of His followers who walked with Him. To begin to provide a family-based ars moriendi for the dying infant, I propose clinical recommendations – based on stories from the Gospels – that facilitate the opportunity to celebrate the child’s birthday, to contemplate death, to understand the role of accompaniment, and to preserve memories. The ars moriendi can assist in developing an art of perinatal hospice done well.