a bioethical question

Philosophy Forums Society, Government, and Economics
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Here’s a New York Times article that raises and proposes answers to a difficult real-life bioethical dilemma. I thought people here might find it interesting and have other opinions.

January 26, 2007
Op-Ed Contributor
A Convenient Truth
By PETER SINGER
Melbourne, Australia

CAN it be ethical for a young girl to be treated with hormones so she will remain below normal height and weight, to have her uterus removed and to have surgery on her breasts so they will not develop? Such treatment, applied to a profoundly intellectually disabled girl known only as Ashley, has led to criticism of Ashley’s parents, of the doctors who carried out the treatment, and of the ethics committee at Seattle Children’s Hospital, which approved it.

Ashley is 9, but her mental age has never progressed beyond that of a 3-month-old. She cannot walk, talk, hold a toy or change her position in bed. Her parents are not sure she recognizes them. She is expected to have a normal lifespan, but her mental condition will never improve.

In a blog, Ashley’s parents explain that her treatment is not for their convenience but to improve her quality of life. If she remains small and light, they will be able to continue to move her around frequently and take her along when they go out with their other two children. The hysterectomy will spare her the discomfort of menstrual cramps, and the surgery to prevent the development of breasts, which tend to be large in her family, will make her more comfortable whether lying down or strapped across the chest in her wheelchair.

All this is plausible, even if it is also true that the line between improving Ashley’s life and making it easier for her parents to handle her scarcely exists, because anything that makes it possible for Ashley’s parents to involve her in family life is in her interest.

The objections to Ashley’s treatment take three forms familiar to anyone working in bioethics. First, some say Ashley’s treatment is “unnatural” — a complaint that usually means little more than “Yuck!” One could equally well object that all medical treatment is unnatural, for it enables us to live longer, and in better health, than we naturally would. During most of human existence, children like Ashley were abandoned to become prey to wolves and jackals. Abandonment may be a “natural” fate for a severely disabled baby, but it is no better for that reason.

Second, some see acceptance of Ashley’s treatment as the first step down a slippery slope leading to widespread medical modification of children for the convenience of their parents. But the ethics committee that approved Ashley’s treatment was convinced that the procedures were in her best interest. Those of us who have not heard the evidence presented to the committee are in a weak position to contest its judgment.

In any case, the “best interest” principle is the right test to use, and there is no reason that other parents of children with intellectual disabilities as profound as Ashley’s should not have access to similar treatments, if they will also be in the interest of their children. If there is a slippery slope here, the much more widespread use of drugs in “problem” children who are diagnosed as having attention deficit hyperactivity disorder poses a far greater risk than attenuating growth in a small number of profoundly disabled children.

Finally, there is the issue of treating Ashley with dignity. A Los Angeles Times report on Ashley’s treatment began: “This is about Ashley’s dignity. Everybody examining her case seems to agree at least about that.” Her parents write in their blog that Ashley will have more dignity in a body that is healthier and more suited to her state of development, while their critics see her treatment as a violation of her dignity.

But we should reject the premise of this debate. As a parent and grandparent, I find 3-month-old babies adorable, but not dignified. Nor do I believe that getting bigger and older, while remaining at the same mental level, would do anything to change that.

Here’s where things get philosophically interesting. We are always ready to find dignity in human beings, including those whose mental age will never exceed that of an infant, but we don’t attribute dignity to dogs or cats, though they clearly operate at a more advanced mental level than human infants. Just making that comparison provokes outrage in some quarters. But why should dignity always go together with species membership, no matter what the characteristics of the individual may be?

What matters in Ashley’s life is that she should not suffer, and that she should be able to enjoy whatever she is capable of enjoying. Beyond that, she is precious not so much for what she is, but because her parents and siblings love her and care about her. Lofty talk about human dignity should not stand in the way of children like her getting the treatment that is best both for them and their families.

Peter Singer, a professor of bioethics at Princeton University, is the author of “Writings on an Ethical Life.”

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Personally I find it admirable that the parents would go to the time and expense to take such steps to see that their disabled child is comfortable. However there is a serious ethical question here, and one not easily dismissed and it is an argument that in some arenas can not be won. These changes were done TO Ashley, not at her will but that of her parents, and certain people will not let us forget that. Nevermind that it was the best of intentions.

So what are the alternatives? Doing nothing, and allowing Ashley to develop naturally would result in the problems mentioned in the article. If you have a person who cannot even change their position while laying in bed, menstruation is definitely going to be an issue. I know that if it were me, and I couldn’t move, I’d much rather have a surgical procedure so that I wouldn’t have to lay there uncomfortably while someone else has to tend to my feminine needs. Having been in that situation previously during my 2 years of confinement to a wheelchair, I can honestly say that it is something I never wish to repeat experience. However, I am able to make that conscious choice and I think that choice is the key issue here.

I think the key problem here is that Ashley has no way to communicate her wishes, and as parents of a disabled child I am confident that they want only the best for their daughter. Being the parent of a special needs child is a monumental task, one often not understood by people who haven’t experienced it. I am daily impressed by the strength of these parents - my best friend has an autistic son so I’ve got a relatively high amount of exposure to that sort of situation. It is a life of hard decision after hard decision.

…

Reading this story about Ashley couldn’t help but make me remember another girl named Bobbie. Bobbie was severely disabled mentally. She could walk around, she liked to eat sweet things, but she had absolutely no conversational ability, couldn’t form words only low growls/moaning sounds. She would often wander around the neighborhood, her arms in strange twisted position. I always found it very sad. Her family - very poor and also very apathetic to her - could not give her any sort of special support or schooling. They pretty much just let her run around. A lot of the times if I was over at their house they would always yell at her to stop this or don’t do that but it was pretty clear she didn’t understand. She was 10 years old with the mental development of a 1 year old.

Flash forward. Years later I was talking to one of Bobbie’s older sisters who I kept scant contact with. She told me that somehow - no one knew how, and Bobbie couldn’t tell them - Bobbie had gotten pregnant. Now, I don’t know the particulars of the legal situation in the state of Louisiana where this happened, but the parents wanted to have an abortion done - for Bobbie’s health and also because someone had clearly taken advantage of her. However, at the time they were told that Bobbie could not have an abortion because her parents wanted her to, that she had to want it herself. So we run into the same sort of problem, where ‘choice’ is needed but the subject is incapable of making the choice themselves. It was a very heartbreaking situation, because now you have a disabled person like this, who still cannot speak or meaningfully communicate, enduring childbirth and what kind of future will that child have? I’m not talking about the mother being ‘slow’ , I’m talking complete mental deficiency to the point where she cannot be communicated with. Her family still had to put a bib on her and feed her meals to her or she would not eat. What kind of mother is she going to be, truly, when she doesn’t even know to feed herself much less a child? What kind of life is that child going to have? What kind of burden on the family? I wont discuss the issue of whether or not they ‘deserved’ this for letting Bobbie run amok around the town, as its immaterial and unimportant. The same moral issues crop up, here.

Anyway, the article reminded me of this because it was very different - you have parents taking steps to insure their child’s comfort and in addition this prevents anything like the above happening. I think that the good outweighs the bad in this case, and while yes the changes are ‘unnatural’ - one could make the same argument for giving a child eyeglasses when God or Biology wanted them to see the world as a blur. I think we’ve moved into a new era as humans where gene therapy and the like are going to become more and more commonplace. I think we have to ask ourselves “Does this act relieve suffering?” and if the answer is yes, then we need to curb our objections and consider the alternatives.

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I believe that the parents are disgusting and this futile attempt to prolong the life that was meant to be selected by nature to die is unforgivable.

What’s so bad about dieing, we will all die someday, nothing is more natural.

The doctors and parents should be prosecuted for such cruelty, an animal would be treated with more respect and put down or allowed to die, why not a human? What quality of life can a person have who will never reach the age of awareness, what purpose could she have other then the ugly selfish desires of the parents who are only thinking of themselves?

4

I’m with you in sentiment, Kingdaddy.

However from what the article says, the child is ‘expected to have a normal lifespan’ and the surgical changes the parents are imposing are not those to ‘keep her alive’ but rather to ‘make her more comfortable’. If the little girl had undergone these extensive surgical treatments because her body was unable to keep itself alive without having done so, then I agree its the kind of situation where she should be allowed to die. I understand its a very fine line, and my response to this is based on the assumption that “letting the child die is not an option : now, do we let her have the surgery or don’t we?”

I agree with the sentiment of natural selection, believe me I do. But we have to assume that since the child is now age 9 that the parents have no intention of ‘killing’ the child at this point, so moving forward, whats worse?

5

We are so judgmental aren’t we? I thank God that I am not in the shoes of those parents. Euthanasia may never have been a legal option for them. I am repulsed by their choice, but persuaded by Singer that it is the best one now. Why? Because it is the one most likely to reduce suffering.