Posted on 01/03/2007 1:14:08 PM PST by Lorianne
SEATTLE — This is about Ashley's dignity. Everybody examining her case seems to agree at least about that.
Ashley is a 9-year-old girl who has static encephalopathy, a severe brain impairment. She cannot walk or talk. She cannot keep her head up, roll over or sit up by herself. She is fed with a tube. Her parents call her "Pillow Angel" because she stays right where they place her, usually on a pillow.
Her parents say they feared that their angel would become too big one day — too big to lift, too big to move, too big to take along on a family outing.
And so they decided to keep her small.
In a highly unusual case that is stirring ethical debate in the medical community and elsewhere, doctors at Seattle Children's Hospital and the parents involved are describing how Ashley has received treatment over the last few years designed to stunt her growth.
The treatment, known as "growth attenuation," is expected to keep Ashley's height at about 4 feet 5 and her weight at about 75 pounds for the rest of her life. Doctors expect her to have a normal lifespan. Had she not been given the treatment, doctors estimate, she would have grown into a woman of average height and weight — about 5 feet 6 and 125 pounds.
The parents' decision has drawn criticism and even outrage from some doctors and caregivers, who say such treatment is a violation of a person's dignity. Some say it's also a violation of the medical oath: First do no harm.
(Excerpt) Read more at latimes.com ...
I disagree, actually. It is certainly for us to judge, because there are "Mengele" approaches that are clearly unacceptable.
It's long been agreed in an overarching sense that there is nothing unethical about medical approaches to treat disabilities, but at the same time it's generally agreed that some specific treatments might be unethical.
For example, I vaguely recall a case in the past few years where some moonbat deaf woman wanted to ensure that she had a deaf baby. That's obviously wayyy over the line, and we're morally bound to condemn it.
So what about this one? Does it cross the line? This case isn't ethically challenging at all. To begin with, Ashley will never change to become a normal human being ... sad, but true.
That being the case, the question boils down to the choice of medical approaches to keep her relatively healthy and happy.
If one looks at it objectively, the debate seems to boil down to a rather insipid one about whether Ashley has the inviolate right to become sexually mature, or whether her parents have the right to decide it's best for her to prevent same.
Will Ashley's quality of life suffer as a result? The objective answer here seems clearly to be "no." She will never marry, and never have kids -- she has no use for sexual maturity. On the other hand, the parents' rationale for keeping her small provides reasonable grounds to conclude that her quality of life will be at least maintained, whereas it would most likely diminish were she to grow to "full size."
There's no ethical challenge here.
You just proved the point, didn't you?
I agree with you. This is a very rare and very difficult case. The parents and experts seem to think this will enhance, not diminish her life.
For all interested, in case this hasn't been posted before on this thread, here is the link to the family's blog:
http://ashleytreatment.spaces.live.com/blog/
excerpt from above link:
Ashley is a beautiful girl whose body is developing normally with no external deformities; see photos. She is expected to live a full life and was expected to attain a normal adult height and weight. Ashley being in a stable condition is a blessing because many kids with similarly severe disabilities tend to deteriorate and not survive beyond five years of age.
Ashley is alert and aware of her environment; she startles easily. She constantly moves her arms and kicks her legs. Sometimes she seems to be watching TV intently. She loves music and often gets in celebration mode of vocalizing, kicking, and choreographing/conducting with her hands when she really likes a song (Andrea Boccelli is her favorite – we call him her boyfriend). She rarely makes eye-contact even when it is clear that she is aware of a person’s presence next to her. Ashley goes to school in a classroom for special needs children, which provides her with daily bus trips, activities customized for her, and a high level of attention by her teachers and therapists.
Ashley brings a lot of love to our family and is a bonding factor in our relationship; we can’t imagine life without her. She has a sweet demeanor and often smiles and expresses delight when we visit with her, we think she recognizes us but can’t be sure. She has a younger healthy sister and brother. We constantly feel the desire to visit her room (her favorite place with special lights and colorful displays) or have her with us wanting to be in her aura of positive energy. We’re often huddled around her holding her hand, thus sensing a powerful connection with her pure, innocent and angelic spirit. As often as we can we give her position changes and back rubs, sweet talk her, move her to social and engaging places, and manage her entertainment setting (music or TV). In return she inspires abundant love in our hearts, so effortlessly; she is such a blessing in our life!
To express how intensely we feel about providing Ashley with the best care possible, we would like to quote from a private email that we received from a loving mother with her own 6 year old “Pillow Angel”: “In my mind, I have to be immortal because I have to always be here on Earth to take care of my precious child. Taking care of him is difficult, but it is never a burden. I am [his] eyes, ears and voice. He is my best friend, and I have dedicated my life to providing joy and comfort to him. To my last breath, everything I will ever do will be for him or because of him. I cannot adequately put into words the amount of love and devotion I have for my child. I am sure that you feel the same way about Ashley.”
The chance of Ashley having significant improvement, such as being able to change her position in bed, let alone walk, is non-existent. She has been at the same level of cognitive and mental developmental ability since about three months of age.
Faced with Ashley’s medical reality, as her deeply loving parents, we worked with her doctors to do all we could to provide Ashley with the best possible quality of life. The result is the “Ashley Treatment.”
I disagree, actually. It is certainly for us to judge, because there are "Mengele" approaches that are clearly unacceptable.
R9, your statement surprises me a little based on some of your earlier posts. I don't know enough about the specifics of this case to have any idea what I would do in the situation these parents face, but found some of the details of the treatment disturbing -- especially given the "slippery slope" that we have been on ever since the likes of Peter Singer were given the slightest bit of credence by academia and society at large. The statement to which you responded - which not only brought in the "it is not for any of us to judge" line but also broad-brush characterized one side of the ethical argument as "comparing the parents to megele, et al," - is a perfect illustration of the kind of "Thou Shalt Not Judge" argument that xs ojected to on this thread. And your response that "It is certainly for us to judge, because there are 'Mengele' approaches that are clearly unacceptable" is consistent with what xs has repeatedly said on this thread. (To some extent, it also illustrates Ann Coulter's argument in Godless about liberals' penchant for trotting out "untouchable" proxies like the Jersey Girls to make their arguments because when you suggest they are wrong about something you are a mean-spirited nazi.)
In this case, in which you may be MUCH more informed than I, you have stated that you see no ethical challenge at all. Based on what little I know about the case from reading the article posted, I think some aspects of the treatment are disturbing and might pose serious ethical challenges. To express that concern is not to call the parents nazis or compare them to mengele (although similar exressions on this thread have been characterized as such).
The post to which I am responding was a well articulated and reasoned post, and one that allows for an interesting and civil discourse between people who may or may not disagree on the matter. Sadly, some of your earlier posts - particularly to someone who was saying essentially the same thing you said in your first paragraph here - stifled, rather than stimulated, further discussion.
FRegards.
Ah, but the difference between me and that other poster, is that I actually attempted to add something substantive to the discussion, rather than a rather limp and repetitive plea for "debate" in which she stoutly refused to take part.
And it is precisely that difference which informs my complete lack of patience with her posts.
Sigh.
As an American, and as a tax payer, of course you and every other citizen have an interest in the War on Terror.
The medical decisions that these parents make for their daughter, along with advice from their doctor, are none of your business. It is not a public matter.
Of course you have a right to your opinion. But when it comes to the private medical decisions of others, it means nothing.
One other thing, that is really neither here nor there; it always makes me giggle when a lawyer uses the word "logic". Oh, the irony. I suppose you are a malpractice attorney, hmm?
They are my business and are a public matter when the parents are performing serious elective surgery on their child for reasons of convenience only. This should be tantamount to a crime. I guess you are a member of abortion-on-demand crowd too, eh? Who gives a damn about who may suffer so long as it doesn't affect your overall convenience. Makes perfect sense.
And as for your little shot at attorneys, if you hold us all in such disdain, I suggest that when you are in need of legal counsel in the future that you represent yourself instead of consulting with an experienced attorney. See how that goes for you.
I have access to an honest, ethical, intelligent attorney, one of the last of his kind.
I take it from your lack of response that you are indeed an ambulance chaser, which is also indicated by the fact that you are so interested in sticking your nose into other people's business.
Frivolous litigation, class action lawsuits, and lawyers who will do anything for a buck are a big source of our current problems. So, thanks for doing your part.
Nope. Wrong again.
Wow. You just don't shut up. Don't you have some disabled person to starve or something?
And there we get to the root of your argument. All things Terri, 24/7, right?
Have a lovely evening, Mr. Edwards.
You just made her case, numbnuts.
If you think so, please don't ever sit on a jury, you d' bag.
That is always the response of people who have no valid argument. The libs use it all the time.
Nobody should be permitted to elect major surgery for their child for the sake of the parents' convenience only. I am not talking about where the surgery is medically necessary or would otherwise aid in the overall well-being of the child, for that is indeed a different story.
Parents making medical decisions for their child? Sure. Feel free. I'm all for it. Just don't make medical decisions which may negatively impact their child in the future for the sole sake of the parents' convenience.
Now, I'm off this thread. God knows I've got better things to do.
Thank you. We are strengthened by all the prayers and support we receive on a daily basis. He's a great boy. We continue to hope we'll have progress.
I too am shocked, at the news media’s obsession with invading peoples private lives, and casting a spot light on their most undignified difficulties.
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