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Whose Best Interest?

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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Marian Neudel

posted January 19, 2007 at 9:01 pm

I can understand why Ashley’s parents made the decision they did, despite its drasticness. No one has the right to judge them who is not willing to fill their shoes for the next thirty years. The only part of it that I am not quite comfortable with, and that none of the “experts” seem to have addressed, is the long-range effect of the large doses of estrogen. I understand how that can stunt growth, which is the desired effect here. But could it also cause cancer or some other serious illness? I know that, for instance, it is possible to get what would otherwise be ovarian cancer even if one no longer has ovaries (it’s called “primary peritoneal cancer” but it’s the same disease.)

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posted January 21, 2007 at 2:24 am

Unfortunatly this is not a case of right or wrong. The first comenter is correct. You must be in the shoes of the who need to deal with this. Just remember not only they and the child are involved forever. Someday the parrents will be too old to care for the grown person she may become. Or they will die. In any case the government will be called in to care for her if she can not care for herself if there is nobody else. The better the child can be the less the adult may need to be taken care of at best. At least the grown person will understand what the parrents were trying to do if capeable of understanding. If not, then whoever needs to deal with the grown person could try to make it known. One can but do ones best at the time. It really is not for us to say.

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posted January 22, 2007 at 5:34 pm

when iindividuals can have an informed voice in the management of their care or treatment it is always best. after all, whose life is more profoundly impacted by the treatment and results than the patient her/himself. Even young children can focus on the “cost benefit analysis” when it is their very life that is at stake. Children are surprisingly insightful and closer to nature/god/creato than we adults percieve. Trust the child to really hear what is being said and then allow the child to make those life altering consequences while consulting with caring experts and caregivers. eh? love should be in the best interest of the reciever if it is truly unconditional love.

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Chana Silverman

posted January 22, 2007 at 6:37 pm

I relate to this case because I have a develpementally disabled daughter. She is 34 years old and profoundly Autistic. She does not speak, but has developed her own way of communicating with her eyes, head nods and pointing. My daugher has a delighful personality. She is very loving and trusting and really enjoys life. even with a low threshhold for stress. My daugther stared her periods when she was 11 years old. She has always had a heavy monthly flow, but in the past 2 years her flow has become really excessive. Her teachers have been very concerned with how many times they need to change her in one day. To keep all the bases covered so to speak, she wears diapers plus pads during her menus. An Ultra Sound did not reveal anything abnormal. Birth Control pills have been tired with out much of a change except now she flows inbetween her periods. (A side affect of the pills). At her last blood test she came up anemic – soooo her uterus is going to go! All concerned with my daugher believe this is the best thing for her. She has a really good Doc so I am at peace with it. They will leave her ovaries so she will not need to take Estrogen. Her surgery will happen in Feb. If you read this you might remember to Daven for her – Dafna bat Chana. Thanks and Shalom all, Chana

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