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Thursday, January 10, 2008
Death or Damnation: An Adolescent's Treatment Refusal
Last November, Washington State Superior Court Judge John Meyer accepted the decision of 14-year-old Dennis Lindberg to refuse a life-saving blood transfusion during treatment for leukemia, even though his parents and the state wanted the transfusion to be forced upon him. The boy died shortly thereafter.
For the previous four years the boy had lived with his aunt, who is a Jehovah’s Witness, and his refusal of the blood transfusion was based on his and his aunt’s religious convictions. Judge Meyer agreed that with the transfusion the boy had a 70 percent chance of surviving at least the next five years, the time period typically used to assess the success of a therapy. Nevertheless, Judge Meyer explained, “[Dennis Lindberg] is mature and understands the consequences of his decision..., and he believes with the transfusion he would be unclean and unworthy.”
Recently, some pediatricians and like-minded bioethicists have also held that adolescents and children should be allowed to make their own choices, particularly with regard to participation in research and refusal of treatment. They base their stand on “the rule of sevens,” an ancient concept now supported by empirical research which showed that children over the age of 14 were just as good as adults in thinking their way through problems designed to test reasoning skill and that some children between eight and fourteen had similar mental ability. Based on this finding, they concluded that the choices of all children over 14 with normal mental development should be accorded respect, and that the same consideration should also be extended to mature minors who are over seven.
Although the reasoning ability of adolescents may be comparable to adults, their judgment in real situations seems to be remarkably different. According to the research of developmental neuro-biologists and psychologists, the human brain takes about 30 years to become fully developed, and they have identified significant spurts in brain development that occur after puberty. Also, according to some studies, adolescents actually interpret social cues very differently from adults. These findings are compatible with the reports of adolescent medicine specialists who remark on how different adolescent thinking is from adult thinking: adolescents tend to be more concrete, they tend to behave as if they are immune to harms (like superheros), they tend to see situations in black and white whereas adults see shades of gray, they tend to have more intense emotional reactions, they tend to be more impulsive, they tend to focus more on immediate gratification than distant consequences, they tend to be more influenced by the opinions of others, and they are more inclined to ignore the conclusions of their own reasoning.
Seeing the thinking of children and adolescents as radically different from adults’ also conforms with legal systems around the world that typically do not hold children and adolescents fully responsible for their actions and do not punish them as adults. The need to note the difference is also reflected in the bioethics literature on decisional capacity, which distinguishes the ability to “understand” from the ability to “appreciate” the relevant facts. Clearly, these factors were not given much weight by Judge Meyer in the Lindberg case.
It is neither pleasant nor easy to force treatment upon someone who wants to refuse it. Yet sometimes, that is what must be done. When there is a high likelihood of a serious bad outcome without treatment and a high likelihood of a significant benefit with treatment, it is unreasonable to refuse. Because the refusal is unreasonable and because a child should not be presumed to have decisional capacity, children should not be allowed to refuse medical treatment that is very likely to confer significant benefit.
Imagine another case. Darlene is a 14-year-old girl who wants to refuse an appendectomy for a ruptured appendix because her sincere commitment to Greek ideals of the body has made her foreswear any form of mutilation. Darlene will not accept even the smallest laparoscopic scars, even though she understands that the consequence of refusing surgery is very likely to be death. She gives testimony of her sincere and abiding four-year commitment to this principle by explaining that she has similarly refused the body piercing and tattoos that her friends have urged upon her.
Because her refusal is unreasonable and because a child should not be presumed to have decisional capacity, she should not be allowed to refuse the appendectomy. Furthermore, it is easy to imagine that a few years from now, Darlene, if she survives, may be sporting tattoos and multiple ear studs and thinking her previous commitment to Greek ideals was ridiculous. Passionate commitments of adolescents are notorious for having a short shelf -life. If we could ask the Darlene of tomorrow about whether a life preserving, minimally scarring procedure should have been imposed upon her, it is easy to imagine that she would be glad that it was. Many philosophers take this test of future-oriented consent to be the mark that a previous choice should not be counted as autonomous.
My guess is that it would have been easier for Judge Meyer and the bioethicists who weighed in supporting Dennis Lindberg’s blood transfusion refusal to reach the correct conclusion in the case of Darlene’s appendectomy refusal because she does not invoke religion as her justification. In this country, religious reasons have recently been given privileged standing.
Yet the difference between religious and aesthetic reasons is not at issue here. The crux of the matter is whether the choices of nonadults should be accorded the respect that we give to adult decisions. An adult’s decision based on religious or aesthetic reasons should be respected even when death may result precisely because adults can take responsibility for their own actions. Because nonadults cannot be held responsible for what they do, they should be paternalistically protected from significant harms.
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Readers Respond to "Death or Damnation: An Adolescent's Treatment Refusal"
I did not say anything to imply that Judge Meyer relied upon the rule of sevens. In fact, I was not sufficiently informed about the details of the case to make any specific comments about it.
Instead, using the case as a jumping off point, I spoke to the general issue of when it is reasonable to reject an adolescent’s refusal of treatment. My argument was against the presumption that understanding alone is a sufficient mark for being ascribed the ability to take responsibility for one’s actions. To me and many others who write on decisional capacity, the ability to appreciate relevant facts is very different from the ability to understand them. At the very least, appreciation involves ascribing appropriate weight to the various factors and judgment in considering them together to reach a conclusion.
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The judge’s decision upholding 14-year-old Dennis Lindberg’s refusal of blood transfusions had more support than simple-minded reliance on “the rule of sevens.” This misnamed “rule” is unhelpful and certainly an insufficient ground for a decision in any specific case, which should be based on the relevant facts, including the mental state and capacity of the particular individual involved, rather than any bioethical nostrum.
As reported in the local press, however, the court found that Lindberg “is mature and understands the consequences of his decision” on the basis of testimony from Dennis’s parents and guardian, social workers, and his physician. Although the court made no finding about Lindberg’s ability to “appreciate” the relevant facts, this seems a distinction without a difference. Lindberg was undoubtedly influenced by his custodial guardian, who is a Jehovah’s Witness, but who of us is not influenced for better or worse (from a rational perspective) by the views of others? Ultimately, the question is not about the wisdom of our choice, but whether it is truly ours. Courts are accustomed to deciding whether influence is undue.
Complicating the Lindberg case is the fact that it did not involve a one-time post-trauma or post-surgical transfusion, which might have been accomplished with physical restraint of the unwilling patient. Rather, the case involved a proposed three-year course of many transfusions following chemotherapy for leukemia. Understandably, the court – as well as Lindberg’s physicians – viewed with alarm the prospect of repeated restraint of an individual in his mid-teens.
- Michael Yesley