In 1982, "Baby Jane Doe" was born with Down's syndrome and an intestinal blockage. Routine surgery to clear the blockage could have saved the baby's life. But the mother's ob/gyn told her parents that they could refuse surgery. Jane's parents decided she--and they--were better off if she died. They refused to consent to surgery and ordered the doctors withhold food and fluids for their child dooming the baby to death by dehydration.
When the news broke that Baby Jane was being neglected to death because she was disabled, several couples came forward asking, nay, begging, for the opportunity to adopt her. But Jane's parents wanted their baby dead, not adopted. They refused to allow others to intervene. The matter was brought to court where a judge sided with Jane's parents and against her equal moral status as a human being. She died six days after her birth. If a "normal" child were neglected to death in this way, the parents and doctors would be brought to the docket for child abuse. But because Jane was disabled, she was made to die and no legal sanctions were applied against either parents or participating doctors. This despite that on her way to death, according to Dr. C Everett Koop, she became parched, dried out, and spit blood.
In response, the federal government passed the "Baby Doe" regulations intended to prevent such medical discrimination from being inflicted upon disabled infants in the United States. The law permits the withholding of treatment for babies in irreversible comas, if treatment would only prolong dying, if it would be virtually futile, and if it would be inhumane.
These regs are now under attack
. An article published in the journal Pediatrics
concludes, "The Baby Doe rules are only consistent with the best-interests standard if it is assumed, as it was by [President Ronald] Reagan and [Surgeon General C. Everett] Koop, that maximally supporting infants with any degree of conscious life who are not dying is always in their best interest." And so the agenda comes into focus.
A medical system that accepted the intrinsic equal worth of all human beings might not need the Baby Doe regulations. But as explicit and implicit utilitarian thinking increasingly casts a shadow over mainstream bioethics, such rules become literal lifesavers. Permitting decisions for infants based on discriminatory "quality of life" judgments would lead us right back to the mindset that permitted the atrocity that befell Baby Jane Doe.