“It is much more important to know what sort of a patient has a disease than what sort of a disease a patient has.” - Sir William Osler






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My Answer To the Unasked Question

...that question being, what do you think?

Maybe you have not heard about the intense bioethical debate surrounding "the Ashley case"; I had not until today. Briefly, Ashley is a nine-year-old girl who is severely developmentally disabled (and by "severely," I mean "has the mental capacity of a three-month-old"). No one is questioning the severity or the permanence of her problems. Her parents have committed to taking care of her at home, which includes lifting her, changing her position frequently, bathing her, etc. and have little assistance in doing so. They elected to give Ashley high-dose estrogen to shorten her height so that they could continue to take care of her; this will put her into early puberty and close the epiphyses of her bones. To combat the side effects of the estrogen, she was also given a prophylactic bilateral mastectomy and hysterectomy.

The parents chose to post about their decision on their blog, and as you may imagine were hit with a storm of criticism. Much of it accused them of perpetrating "child abuse." Other accusations, such as those I'm going to quote here, were directed at the physicians who advised them on their decision as well as at the American health care system: It is the elements of our culture that create an atmosphere where surgery is a solution for care giving. Care giving is traditionally women's work, and therefore it is fraught with social expectations and little appreciation. The care that women provide for their families is unpaid labor, which makes it of no value in a patriarchal, capitalistic system.

Thanks to Ilyka's blog, I got to hear and read about all this and I posted my answer below.

Genni, speaking as an MD I recognize your points but I don't think you address some of the issues Ashley's parents are dealing with. For instance, most insurance plans (and Medicaid) simply will not pay for the kind of in-home care this disabled girl would need for the rest of her life were this surgery not to take place. They. Will. Not. Pay. Tube feeding, yes; 24-hour care or home health aides, no. The parents would have to cough up the cash for the kind of care she will need for the rest of her life, and believe me that's a LOT of cash. Or they'd have to scramble continually for grants and city- or county-supported programs, and that's like relying on quicksand. The program that helps you today can (and probably will) be gone tomorrow.

Is the approach taken by the MD's in her case an extreme measure? Absolutely, and I really have never heard of such a method being tried before. (I should note here that I'm not a pediatrician or an endocrinologist.) I appreciate the chance to read what you've written, because I am not sure I would have heard about this case other than through Ilyka's site. (Work avalanche, I haven't paid much attention to the news recently, I'm afraid.)

While I said above that I'm not a pediatrician, I am an internist and I do a lot of rounding on geriatric patients in nursing homes, so I have a fair idea of the kind of life Ashley would be condemned to if her parents weren't taking care of her. Personally, I'd pick the surgery if it meant my parents could take care of me at home... but again, that's just me. I'm pretty sure this is the only way Ashley's parents can afford to handle her care themselves. The ugly truth is, most insurance plans would gladly pay for the surgery and estrogen (which is cheap) rather than the cost of in-home care for the next twenty or thirty years.

I don't see this as a feminist issue. Speaking as an MD, a uterus is just another organ. You can live without it. That doesn't mean you should just whip it out at the first sign of a problem, either; for some women, removal of the uterus can seriously interfere with their ability to have an orgasm, for one thing. But some women really and truly have a better quality of life after hysterectomy.

Labels: Medicine

posted by Dr. Alice at #