To Save or Let Die: Tragedy and Parental Decision making for Critically Ill Neonates
Ryan Antiel, M.D., MA, Post-doctoral Fellow in Advanced Biomedical Ethics, The University of Pennsylvania Perelman School of Medicine
Technologies that overcome life-threatening congenital anomalies have raised new moral and legal questions regarding appropriate treatment for seriously ill newborns. In the 1980s, standard treatment was withheld from more than half of infants born with myelomeningocele (spina bifida). This decision fell within the parent’s prerogative. Today though, a mother of an infant born with spina bifida is no longer offered non-treatment as an option. On the other extreme, most agree that aggressively treating a newborn with anencephaly is inappropriate.
While the law has lead to consensus in cases such as non-treatment for spina bifida, Bowen vs. American Hospital Association set precedence for government non-interference regarding treatment decisions for severely disabled newborns. Within this grey zone, there continues to be disagreement about the uses and limits of technology. For example, should treatment be offered for a neonate who has poor prospects of survival and will likely endure long-term functional impairment if they do survive? Some use medicine to preserve ‘bare life’ at any cost. Others focus on quality of life, arguing that aggressive treatment just leads to more pain and suffering.
In this paper, I will examine the role that religion plays for parents and physicians alike as they attempt to navigate these dilemmas. If we wish to have a more substantive public discourse about the limits of medicine, individual moral communities and religious traditions will need to better understand and articulate their own identities. Empirical studies demonstrate that religious parents are in fact more likely to request aggressive care. Likewise, religious surgeons are less likely to acquiesce in parent’s decisions to forgo surgical intervention for congenital anomalies. Jeffrey Bishop correctly reminds us that this “life-at-all-costs” mentality is not intrinsic to religious faith but rather is politicized as leverage against issues such as abortion and euthanasia. Alternatively, a traditional theological anthropology understands technical intervention to be obligatory only when it serves one’s spiritual end.
Finally, following Alasdair MacIntyre, I will conclude that understanding medicine as a tragic profession may help us to better accept the limits of the art. The tragic error is to believe that medicine can ultimately cure us. While “life-at-all-costs” minimizes any sense of tragedy, a strictly consequentialist approach to ethics fails truthfully to acknowledge the unresolvable uncertainty of our predictions about quality of life or long-term survival. For tragedy can be misconstrued as simply a justification for discarding defective newborns. In contrast, recovering the tragic requires moral communities to articulate our commitment to care for our ill children while also recognizing the limits to that care.
Technologies that overcome life-threatening congenital anomalies have raised new moral and legal questions regarding appropriate treatment for seriously ill newborns. In the 1980s, standard treatment was withheld from more than half of infants born with myelomeningocele (spina bifida). This decision fell within the parent’s prerogative. Today though, a mother of an infant born with spina bifida is no longer offered non-treatment as an option. On the other extreme, most agree that aggressively treating a newborn with anencephaly is inappropriate.
While the law has lead to consensus in cases such as non-treatment for spina bifida, Bowen vs. American Hospital Association set precedence for government non-interference regarding treatment decisions for severely disabled newborns. Within this grey zone, there continues to be disagreement about the uses and limits of technology. For example, should treatment be offered for a neonate who has poor prospects of survival and will likely endure long-term functional impairment if they do survive? Some use medicine to preserve ‘bare life’ at any cost. Others focus on quality of life, arguing that aggressive treatment just leads to more pain and suffering.
In this paper, I will examine the role that religion plays for parents and physicians alike as they attempt to navigate these dilemmas. If we wish to have a more substantive public discourse about the limits of medicine, individual moral communities and religious traditions will need to better understand and articulate their own identities. Empirical studies demonstrate that religious parents are in fact more likely to request aggressive care. Likewise, religious surgeons are less likely to acquiesce in parent’s decisions to forgo surgical intervention for congenital anomalies. Jeffrey Bishop correctly reminds us that this “life-at-all-costs” mentality is not intrinsic to religious faith but rather is politicized as leverage against issues such as abortion and euthanasia. Alternatively, a traditional theological anthropology understands technical intervention to be obligatory only when it serves one’s spiritual end.
Finally, following Alasdair MacIntyre, I will conclude that understanding medicine as a tragic profession may help us to better accept the limits of the art. The tragic error is to believe that medicine can ultimately cure us. While “life-at-all-costs” minimizes any sense of tragedy, a strictly consequentialist approach to ethics fails truthfully to acknowledge the unresolvable uncertainty of our predictions about quality of life or long-term survival. For tragedy can be misconstrued as simply a justification for discarding defective newborns. In contrast, recovering the tragic requires moral communities to articulate our commitment to care for our ill children while also recognizing the limits to that care.