A good nursing history photo gallery

MGH Nursing History - Introduction from Massachusetts General Hospital

It's not out, but

here is the cover art and information for the book to which I contributed a chapter, at the Libraries Unlimited website. We're still waiting for the proofs, and it should be published before ALA's conference this summer. Whee!

I'm not really in a position to judge, but

I will. This seems more than a little extreme:

Frozen in time, the girl who can never grow up

Treatment keeps girl child-sized

Parents defend decision to keep disabled girl small

Attenuating Growth in Children With Profound Developmental Disability: A New Approach to an Old Dilemma

Parents of a child in a vegetative state have had her have a hysterectomy, breast surgery to inhibit breast growth, and large doses of oestrogen to ensure she doesn't grow beyond her present 9-year-old stature. They say they did this to make it easier to lift her and maintain a good quality of life.

That exposes her to surgical risks and who knows what the risk to those doses of hormones are, all for the convenience of the family. I'm really surprised they got doctors to do it; certainly it should have gone through an ethics review (that's not covered in the news, so it may have for all I know). Still, since the child is not able to let her wishes be known (and they're not even sure how much she is conscious of--only that she responds to music and seems aware of her surroundings--the parents do legally have a right to make medical decisions for their child.

On the other hand, it is wrong to sterilise a child simply because she is disabled. That's something they did decades ago; it was wrong then, it is wrong now. Tinkering with her growth to relieve a burden is wrong, too. The child remains anonymous, identified by the name Ashley (the parents refer to this course as 'the Ashley treatment' on a website defending their decision). I know the parents have gone out of their way to explain that they do not consider her a burden and that this is not why they did this to Ashley--they have several rationalisations for each step--but doctors and others are concerned about how this could set a precedent that would impinge upon the inherent dignity of the disabled, not to mention violate the primary tenet of 'first, do no harm'.

I can't say I support the decision. It seems wrong to me. I'm not in a position to change that decision, though, and in this case, the damage, if any, has been done. But I hope other parents don't go down this road. I don't know what I would do if I were faced with a similar situation, but I do know I wouldn't subject my child to these 'treatments' just so I could turn her in her bed easier, or not have to deal with a pregnancy should she ever be molested, as they gave as one of their reasons. One of my co-workers, when I mentioned this story, said, 'gee, if they feel that way, why don't they let her die and be done with it?' In other words, at the heart of it, this decision was selfish and not in the best interest of the child. What I think it really comes down to it is that the parents cannot accept that their child will grow into an adult without the ability to function as one, and that they can continue to care for a cute little girl, their 'Pillow Angel' as they call her, since they put her on a pillow and she'll stay there. There's some strange psychology in this situation, that's for sure, and I think the doctors involved should really be taken to task for going along with the parents' wishes in this case.

PS [01/05/07] In order to be fair, and because I am, after all, a medical librarian, I obtained the actual article reporting this case. (Gunther DF, Diekema DS. Attenuating growth in children with profound developmental disability. Archives of Pediatrics and Adolescent Medicine. 2006 Oct; 160(10):1013-17.) Some things I gleaned:

• An ethics review was made
• The main adverse effect of oestrogen therapy in such doses is thrombosis
• The authors make compelling arguments for this 'therapy' as a means of keeping more children in care at home rather than institutionalised
• They have a large section of the article regarding ethics of sterilisation and the history of the practice and the debate over it
• They attempt to answer the 'do no harm' objection

Still, their arguments, like that of the parents', seem to stretch a bit to fit what they want to be the case. No one knows what real effects this will have on this girl. Oddly enough, she is characterised with having minimal consciousness, yet the other concern as a problem for her other than her physical comfort (which the short stature and lack of breasts and menstruation is supposed to allow) is boredom. It seems to me that boredom does imply consciousness. I suppose you could characterise a lack of response due to lack of stimulation as boredom, but I'm not sure it truly applies. How do you judge responsiveness and interest in a child with minimal brain function?

I've read accounts from other parents who care for disabled children (on both sides of the debate). I recognise that 1) it is an extremely difficult job to care for such children, with little rewards and 2) our society is not supportive of home care and caregivers in general. I'm not saying that all that can be done to make the job of caregivers easier should not be done. I'm just afraid that this crosses an ethical line, blurring the details. What I'd really be interested in is how those dealing with disabilities would feel about this case.

I sought the closest thing to an ethics expert I could find and asked about this case. I was told that there was no reason the parents shouldn't seek this to make things easier in an already difficult situation. After all, they didn't expose her at birth. They are caring for her. From an Aristotelian point of view, as well, she does not truly meet the criteria for a person.

But this is a human being we're talking about, a person with a soul. She may not be able to truly live a rich life, but she does have a certain inherent worth and dignity. (Yes, that's the Unitarian in me). I just don't think carving and shaping a person to meet another's ideal of their physicality is right. I know I'm arguing from an emotional standpoint, and that invalidates an argument, but I still believe that this was wrong.

How eerie it will be for her siblings to grow up and go on with lives and she will remain a child, at least in appearance. I wish Ashley could go on to lead a normal life, but that isn't to be. It does seem she is genuinely surrounded by those her love her. I just can't agree with the way they show that love.

But again, it's not my call. It is definitely something that should be debated in an effort to solidify those blurred lines and make sure that medical practice is ethical and for the greater good.

PPS [01/07/07] I can't seem to just let this go. I keep coming back to it. Now that the doctors who performed this procedure are getting more requests for the 'Ashley treatment', I'm struck by everyone referring to other cases where children might be 'frozen' in development. But is it children, or is it girls? Not to play the feminist card per se, but how do you do this to a boy? Would you remove his testicles or give him some sort of hormone injection? Would anyone feel any differently if that kind of radical surgery was done on young boys? I think so. But how different is surgical castration different from a hysterectomy? And if it can be achieved chemically, isn't that a lifetime sort of thing, rather than the relatively short course of treatment in Ashley's case? Just wondering.

Wow

Man Saves Teen Who Fell on Subway Track

Some people say New Yorkers are self-absorbed and not inclined to help anyone out. This shows a different face, as a man risked his own life by rescuing a teen by getting him into the trough under the oncoming train and avoiding the electrified areas. Two trains went over them, with about 2 inches to spare. It was a very close thing. Wow, is all I can say, and kudos to a very good deed.

Death for a flawed piece of legislation

TeacherSource learning.now . DOPA Dies on the Vine PBS

Oh, yes, been there, done that

Dysfunctional family

Taking a moment from lunch to say

Yay! I'm getting a raise. Not just the one in March that everyone gets, but a market raise of about $1 an hour, starting January 1st, but appearing on this week's paycheque. Yay!

Maybe that will offset a little bit of the increase in my medical flexible spending account withdrawls.

Hope the new year brings you good news, too.

Sometimes I get really annoyed

when I put a lot of effort into a post and then it doesn't go through and I lose all the links and either have to start over or just leave it. Tonight's was on Saddam Hussein. I don't feel like going through the whole thing again. Suffice to say I don't think the planet is lessened one iota by his absence. I went into some of the history of Iraq, my feelings about the war, the genocide against the Kurds, etc.

Oh, well. Maybe I'll try again later.

Hope you're having a happy new year so far. I'm going to go release my frustration with Mah-Jongg.

Ah, the power of hormones

The Truth Behind Women's Brains

Happy New Year!

I'm home alone this New Year's (except for Cerys, of course, who's curled up on the bed looking quite sweet). Fireworks are going off outside. I didn't get a chance to see the ball drop in New York City on TV thisyear, so it's a good marker of the passing of one year to the next.

They say whatever you're doing at the changing of the year you'll do throughout the year. I was on the computer searching online. Go figure. In a little while, once things die down in terms of partying, I'll take an offering of wine out to Hekate, who guards liminal points, of which the changing of the year is one. In the meantime I'm drinking some sparkling grape juice (which is actually rather nasty--I should have gone with the apple cider) and having my own private celebration. I would have liked to have spent New Year's with others, but of my friends only one is unattached, and really couples should spend New Year's together, and no one needs a third wheel. And I'm generally not the type to seek out the company of strangers (except that one inexplicable New Year's where I allowed a couple of neighbours to kidnap me downtown for the celebrations. I don't know if I was blogging then; it was a little different).

I'm not making New Year's resolutions this year. I'm tired of manic lists that show all my goals that I'll never reach. I'm just going to try to do the things I know I should do better this year.

Well, wherever you are, have a very Happy New Year. Let's hope 2007 is a little more peaceful than 2006.