Religion and Moral Meaning in Bioethics

Few experiences in life seem more pointless, more suggestive that our lives are subject to powers that are arbitrary, abusive, and destructive, than the suffering and death of children. What possible account could be given to explain, let alone give meaning to such an event? Several years ago, I developed a friendship with a young couple who were anxiously awaiting the birth of their first child. What transpired, quite unexpectedly, was every prospective parent's nightmare: their child was born with serious congenital abnormalities, evidenced visibly by facial disfigurement and substantial respiratory difficulties. Following a short stay in an NICU, the neonatologists indicated that though they could not be sure when death would occur, they were certain that the child's prognosis was terminal, and asked the parents for their preferences regarding continuing or stopping treatment. How might we think about such a problem in contemporary bioethics? We might invoke a benefits versus burdens calculation or a best interests standard, or take procedural recourse to an ethics committee, perhaps recommending withdrawal of life support. Or, we might consider the cogency of arguments supporting active killing as a compassionate act to spare the child what would inevitably be a painful life, whatever its duration. But the parents did not ask those kinds of questions; they instead brought to that very difficult situation an understanding that our lives are subject to ultimate powers which are creative, nurturing, and redeeming, and a way of construing the world shaped decisively by a set of religious convictions about the purpose of life, the meaning of death, and ultimate human destiny. Within that moral vision, Angela was not seen by her parents as a tragedy to be prevented (by prenatal diagnosis and abortion) or an unwanted burden whose life could easily be shortened, but instead as a gift in need of care. With minimal medical support, my friends took Angela home to begin their family life bound together, and over the next few months gave devoted and unceasing care until she died. I do not relate this story to say the parents' choice to care for their daughter at home rather than let her die in the hospital was ethically right or justifiable. I am still unsure about that choice, even though the subsequent care Angela received was to me an exemplary witness of how we should collectively treat the vulnerable and voiceless in our midst. Rather, my point is that a world view provided meaning in a situation that seemed pervaded by arbitrariness and cruelty, a meaning that could not be supplied or sustained by our conventional bioethics maxims about "best interests" or "substituted judgment." The tragedy seen by others, including myself, was transformed into a gift. "Suffer the little children ... for of such is the kingdom of God." Religion offers an interpretation or revelation of reality that responds to what Max Weber referred to as the "metaphysical needs of the human mind" to seek order, coherence, and meaning in our lives, to understand ultimate questions about our nature, purpose, and destiny. Yet, in our common endeavor to do bioethics within the limits of reason alone, the discourse necessary to sustain the traditions of moral insight and meaning embedded in the practices and values of religious communities may be characterized as "private" and so considered largely irrelevant to the overriding objectives of bioethics. Indeed, prominent scholars have given serious consideration to whether traditions of theological ethics may constructively contribute to bioethics and to the practices of health care, and the conclusion on several accounts may often be that such a moral resource is dispensable: "Bioethics, where it succeeds, shows where it does not need theology."[1] The tensions between religious discourse and bioethics pose dual challenges of accessibility and meaning. Insofar as the incorporation of moral claims from a specific religious tradition or community is deemed to undermine the possibilities for a generally accessible bioethics discourse, the significance of religious perspectives may be very limited. …