When doctors determine that a child is dying, what authority do parents have to determine the next course of action? The Baby Theresa and Jahi McMath cases are two complex bioethical cases that raise questions about how much authority parents have over their children’s lives. The Baby Theresa case involved an anencephalic infant whose parents pushed for a sooner death determination to donate her organs, and the Jahi McMath case involved a 13-year-old brain-dead child whose parents sought to prolong life support after receiving a death certificate. Although doctors in both the Baby Theresa and Jahi McMath cases viewed death as imminent, the parents responded differently to their children’s medical diagnoses, reflecting differing views of death. 

In the Baby Theresa and Jahi McMath case, doctors viewed death as certain for both patients. However, although the doctors viewed death as imminent, Baby Theresa’s parents believed that there was no difference in keeping her alive for longer, and Jahi McMath’s parents wanted to keep her on artificial respiration and nutrition. There is a tension between hastening death vs. prolonging death, and Baby Theresa’s parents sought to hasten her death so that her organs could be donated. As James Rachels, an American philosopher and medical ethicist, put it: “being alive is a benefit only if it enables you to carry on activities and have thoughts, feelings, and relations with other people.” As Rachels’ criteria for life suggests, Baby Theresa’s parents understood that there was little point in keeping her alive because, as an infant with anencephaly, she could not experience life in the way Rachels described. So, the best course of action was to declare her dead based on two factors: the commonly undisputed prognosis for anencephalics and the potential to do good by donating her organs early. 

Meanwhile, Jahi McMath’s parents did not agree with the diagnosis, although doctors declared her dead according to California’s Uniform Death Determination Act. They believed she was alive and physically stable. Why did they not agree with the definition of living and death even though the doctors did?  By Rachels strict interpretation of death criteria, stating that “when the brain ceases to function there is no longer any hope for conscious life,” it would be reasonable to take Jahi McMath off life support. However, a plausible reason for the difference in willingness to let go of their child was that at the time of the ethical dilemma, Baby Theresa was an infant and Jahi McMath was older. Additionally, Jahi McMath’s family was known for being religious, so their faith, combined with their memories with her, could have caused them to fight for life support. Interestingly, McMath’s family’s perceptions of what constitutes being alive is quite nuanced, stating on social media, “If you really think about it, Jahi is capable of giving life, how can the dead give life?” Another factor that could have influenced McMath’s family’s decision to not agree with the brain death definition was race. For example, Jahi’s mother believed that if Jahi had been a little white girl, she would have gotten more attention after surgery, and her condition could have been prevented. If the doctors did not treat her right the first time, there is reason to believe that they may get it wrong the second time. This is just one distinction that could have affected Jahi’s family’s decision not to accept the diagnosis of death, and a factor that distinguishes her case from the simplicity of Baby Theresa’s. 

Although Baby Theresa’s parents and doctors agreed on the medical diagnosis, whereas Jahi’s parents did not, both cases ultimately involved a dispute over the legal definition of death. While Baby Theresa’s case involved a dispute with Florida’s law regarding organ donation, Jahi McMath’s parents believed that California’s law regarding the brain death definition infringed on their religious beliefs, causing them to seek treatment in a different state where their beliefs would be accommodated by the law. The law, intended to be just and protect individuals, in both cases prohibited the authority of the parents to do what they saw as the best option. Why did the state laws prohibit the parents from doing what they wanted? It appears that Florida’s law valued setting up the precedent of letting nature take its course by requiring organ donation to occur only after death. This eliminates the risk of abusing the law and killing people just to harvest organs. California’s law, supporting the brain death definition, reveals how it fails to account for nuanced situations like in the case of Jahi McMath, as her parents believed as long as her heart was beating, she was living. Even though Baby Theresa’s organs were not able to be donated, laws are generally meant to standardize medical situations and prevent ethical slippery slopes.

The Jahi McMath and Baby Theresa cases both raise difficult questions about the extent of parental authority. Although the outcomes were ultimately the same for both children, competing stakeholder values made the cases more nuanced. These cases demonstrate how moral judgements are not uniform. Hospitals, ethicists, and the law must take into account factors like the wishes of the family, law, beneficence, and the nature of suffering. The cases of Jahi McMath and Baby Theresa show us that there are limits to parental autonomy, but in some situations parents may find alternative ways to achieve their desired outcome.