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Virtual Talmud

Rabbi Stern raises an interesting point in distinguishing between making a general rule and judging each case on its own particular merits. The problem with a complicated situation like the one Rabbi Grossman writes about–a 9-year-old girl named Ashley with a rare and severe brain disease, whose parents gave her massive doses of estrogen, as well as a preventive hysterectomy and other procedures designed to stunt her growth and prevent the onset of puberty–is that there are different stories that can be told, leading to very different understandings of just what the case is, let alone what its merits are.

I do not doubt that this young girl’s parents are loving and devoted, and that the suffering they have watched her experience, and experience themselves, is heart wrenching. So one story that can certainly be told is that of loving parents who want to care for their daughter as best they can under extremely difficult circumstances and who believe that these extreme measures will give her a better quality of life and an increased ability for them to care for her. But another story can also be told–a story in which this girl is robbed of the dignity of developing into an adult and for whom medical interventions will be dictated by what is most convenient for others.
Depending on which story resonates for you, you’ll probably come up with different positions on whether the therapy was justified in this case.

And that’s why, despite Rabbi Stern’s desire to privilege the particular, Judaism does come up with rules and guidelines to use in medical decision making. The most important of these is whether the procedure under consideration is for the good of the patient–not for what we think the patient might want, not for what we ourselves would want if we were in the same position as the patient, but what is letovato–in the best interest of the patient himself or herself.

Rabbi David Teutsch, incoming president of the Academic Coalition for Jewish Bioethics, points out that the effects of a therapy such as this–especially as applied in such an extreme and outlying case as static encephalopathy–are unknown, and we can’t say what unintended consequences it may bring. Undertaking dramatic medical interventions when human life isn’t at stake, when the consequences of the intervention are unknown, and the patient is unable to give his or her own informed consent is ethically dubious at best, and we should approach them with the extreme caution and humility that the situation–and our humanity–demands.

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