By Amy Oh, Nicole Pong, and Caroline Wilkinson
This article was written in collaboration with Oriuntur Omnes: Nicole and Caroline founded "Oriuntur Omnes" to raise awareness about legal issues through a termly newsletter and educational Instagram posts.
The Baby Doe Amendment is an amendment to the Child Abuse Law passed in 1984. This amendment represents the US government’s first attempt to directly intervene in treatment options for neonates born with severe congenital defects. The Baby Doe Rules mandate that hospitals and physicians must provide maximal care to any impaired infant unless select exceptions are met. If treatment is withheld when the exceptions are not met, physicians or parents responsible are liable for medical neglect, demonstrating how laws have since affected parents’ decisions for their children, as well as how laws can affect treatment options in the US.
Baby Doe was born in 1982 with Down syndrome and tracheoesophageal fistula - an abnormal connection of the trachea and oesophagus. Instead of getting surgery, the parents decided to, along with the physician's advice, withhold surgery and medical care because the child would be cognitively impaired anyway. The court also ruled in favour of the parents and upheld their right to an informed medical decision. Baby Doe died at 6 days of age due to dehydration and pneumonia. Response to the Baby Doe case was vocal from pro-life and disability rights groups, which decried the death as infanticide. US surgeon general Everett Coop was outraged, claiming that the family decided to forego life-saving surgery only because of discrimination against the Down Syndrome diagnosis. President Raegan’s personal concern over Baby Doe’s plight reflected the following regulation put in place. As stated above, if the physician or parent choose to withhold treatment and criteria for ‘exception’ are not met, they are liable for medical neglect, under the extended section 504 of the Rehabilitation Act of 1973. Furthermore, they had to provide a 24-hour telephone hotline for people to anonymously report discrimination.
Currently, if parents or physicians choose to withhold treatment, review boards are obligated to report the case as medical neglect. The rules allowing the withholding of treatment are as such:
1. The infant is chronically and irreversibly comatose.
2. Such treatment would merely prolong dying, not be effective in ameliorating or correcting all the life-threatening conditions or be futile in terms of survival.
3. The treatment would be so futile that it would be inhumane.
The HHS rule was an unprecedented intrusion into the traditional physician’s domain. As part of the Health and Human Services’ (HHS) arguments for the enforcement of the Amendment in this case, it claimed that section 504 was based on the Civil Rights Act of 1964, therefore suggesting that the decision not to treat an infant because of a handicap would be just as immoral as a decision not to treat an infant because of the child’s race. Therefore, HHS and handicapped rights organisations argued that federal involvement is necessary to prevent discrimination against the handicapped. Critically speaking, however, when dissecting this argument the phrasing of ‘discrimination’ should arguably be questioned, as there is certainly a distinction between discrimination in static programs, such as transportation or education, and the fluid context of medical treatment, which was surely less ‘black and white’ than the former.
There is a vast pool of opinions around this discussion, but one aspect that repeatedly seems overlooked is the consideration of the parents. Arguably, a flaw in the Reagan administration’s initiative is that there is no support, whether this be financial or otherwise, provided to the parents who must care for the handicapped child. Furthermore, parents’ decision to withhold treatment does not mean they have neglected their child, or, in the case of Baby Jane Doe, are child abusive. Perhaps the parents don’t want to see their child go through what could be worse pain than their disability. So, this pushes forward the argument that parents should be allowed to decide what is best for their children, meaning that the Baby Doe Laws would be unnecessary.
Moreover, Loretta Kopelman, a professor of Medical humanities, strongly argues that uniform guidelines are incompatible with medical treatment, where grey areas often exist. She believes that the Best Interests Standard (used for adults who are no longer competent decision-makers) should be used to decide for infants, where family members seek the best care for that incapacitated adult which often advocates comfort care and pain management. For example, it is completely acceptable for a surrogate decision-maker to refuse dialysis for a woman in the middle stages of Alzheimer’s Disease on the grounds that it will cause pain and decrease the quality of life. So why should an infant’s pain or suffering be considered valid only when the treatment is futile in terms of survival? Best Interests Standard at least meeting the minimum threshold of acceptable care, hence eliminating possibilities of child abuse or neglect.
However, there is a contrasting view that life support for new-borns is considered to be more “optional” than those for older children, due to the perception of “Saving vs. Creating.” For example, a parent is asked whether they wish to initiate life support for a premature baby born at 24- weeks, where the survival rate is 50- 70% and 15-25% risk of major disability such as cerebral palsy, cognitive impairment or blindness. However, a previously healthy 2-month old baby with bacterial meningitis who had continuous respiratory pauses and seizures was put on life support without the option of withholding care despite the worse prognosis. The reason why it is more “socially accepted” for life support to be more “optional” for new-borns, may be because parents have had no previous interactions with a new-born. Therefore, the infant’s “personhood” is thought to be less than that of an older child, which is not ethically just. Moreover, the perception of “Saving vs. Creating" means that there is an idea of “creating” a disabled baby, whereas treating a previously healthy older child is “saving” it. A neonatologist may not wish to initiate treatment on infants due to the potential guilt of “creating” a disabled child. Therefore, the Baby Doe laws will ensure that there is less differential treatment for infants and that they have a right to life that is not just “optional”.
The Baby Doe amendments to the Child Abuse Act were established with good intentions, to protect voiceless disabled infants from discrimination. However, this law is not accepted by many physicians, due to its “black and white”, pedantic nature which does not consider factors such as the cost of care, the infant's quality of life, and the pain of the treatment. There are opinions that this should be replaced with the “Best Interest standard” used for adults and older children, as infants should be treated the same way as them.