Detoxifying death in the neonate: In search of meaningfulness at the end of life

Abstract

At the end of life, when curative measures have failed to conquer the terminal nature of a disease, it is imperative to introduce healing measures that deal with the human suffering associated with illness. When dealing with critically ill neonates with lethal conditions, it may be necessary to institute healing measures at the beginning of life. In such cases, healing measures must incorporate customary palliative measures but should not be limited to them. The purpose of this paper is to describe two families' approaches to palliation at the end of life in their newborn infants with Trisomy 18, a genetic abnormality usually associated with a markedly decreased life expectancy. We shall consider the concepts of interference versus intervention as we examine subtle medical differences between the two cases. We will address medical, legal, and ethical issues in each case, but special attention will be given to the provision of compassionate care. People face physical, mental, emotional, and spiritual challenges as they go through life. The families' approaches with their infants at the end of their lives may support the premise that the latter two challenges, emotional and spiritual, confront us the most at the end. Encouraging families to engage with their dying infants helps detoxify the experience and make it more meaningful.