Frozen in Time - The Ashley Case

[PonderBee]

I am sometimes given to being overly practical when weighing the balance of morality of one issue or another. While I do place a very high value on human rights I know that I sometimes err on the side of cold steely rational thinking w/out, perhaps, enough thought factoring towards human compassion. I've posted links below to the case of a 9 yr old severely brain damaged girl who, thru her parents direction, has been medically altered to forever remain the size she is now and never complete puberty. Her parents have an embarrassing moniker for her and are probably a bit too generous in sharing this experience with the public. That aside, I do agree with the intervention and do not find it offensive.

What do you think?

http://ashleytreatment.spaces.live.com/

http://www.guardian.co.uk/usa/story/0,,1982370,00.html

EDIT to add: I feel conflicted - as if I really should be disturbed and have disturbed myself by my lack of being disturbed :huh:

[563 740]

I find I have to agree with the parent's quote in the BBC news story:

"The oestrogen treatment is not what is grotesque here. Rather, it is the prospect of having a full-grown and fertile woman endowed with the mind of a baby."

[Jennywocky]

Uggh. What a dreadful decision to have to make.

Intellectually, yes, it makes sense and probably in the long run is for the best.

But it still feels like a violation. I do not envy their situation.

[Gelroos]

It is a dreadful decision to be made, but remember, without any of this attention, she would be dead...

The parents are making a decision to try to keep her alive as long as possible, without complicating that life (however stunted it may be) beyond the girl's expected mental capacity. Whether you agree or disagree, whenever you try to "swim against the flow" with nature, it is bound to be problematic.

[SurfaceTension]

I would want the best for my offspring, not for them to be vegtables and live thier entire life with the mind of a child in the body of an adult. It seems in nature this kind of abnormality would have taken care of itself. Even as parents you have to let go. I only think of what is going on inside her mind. I would consider it a prison, never maturing, stuck in that cell until death.

[euterpenc]

Why bother keeping her alive? The only reason seems to be that people don't want to responsible for her death, or are emotionally attached. I want my children to leave a positive impact on the world. Someone in the above condition perhaps might serve this purpose, but only in so far as she may humble people whose lives don't suck so much.

[Ivy]

*sigh*

[FranG]

I agree with the last 2 posts.It's tough but I don't believe in advanced medicine. Unfortunately I would have to decide for my child since she couldn't do it herself. But I wouldn't do the treatment. I would try extra harder to make sure my child has the highest quality life possible and hope that's enough.

edit// The 2 posts before Ivy; she snuck in their lol. Myreaction wouldn't be to sigh :D

[Ivy]

The two posts before yours didn't exactly say "make sure my child has the highest quality life possible," though. They said "why even bother keeping her alive?"

[formerly known as]

Why bother keeping her alive?

Because humans don't have an objective standard for life?

[cafe]

I think they made the best choice they could under the circumstances. And I don't think you can miss that she *is* having a positive impact on the people who love her.

They say she is like a three month old, and three month olds are delightful. That's the age when you can see them beginning to interact with their physical and social environment. They can laugh and smile, they can show empathy. She is brain-damaged, not brain-dead.

[SurfaceTension]

I think humans have altered the standard for life. Before advancments in medical technology in the modern age this issue would have no existed. The being cannot fend for itself, let alone feed, dress, or shit.

[PonderBee]

This child, her predicament and the medical interventions (being) performed on her behalf have been sneaking up and tapping me on the shoulder since I first read about it and I've been turning it all over in my head. I found myself disturbed that I was so quick to agree with the cut and dry clinical decisions. They made sense to me I thought - but what was nagging at me? Afterall, the parents will be better able to more consistently protect and care for her and all the while not have to deal with as many medical issues & medical institutions as much, not have to deal with adult sized medical equipment in the home, not have to worry about caretakers who are sexual predators or unwanted pregnancy, plus she'd be so much more "portable" and they can take her places she might not otherwise be able to go to. What is life though? How can you define what life ought to be for anyone? Should individuals be rearranged to better fit into the lives of others, to exist in a more convenient and comforting manner for their families? When someone has a high spinal cord injury and becomes quadriplegic - should we similarly adjust their bodies in order to prevent bed sores and make them more portable for mom and dad? I liken this case to selective breeding for size or pruning a maple tree into a bonsai. This is a case of a human being. Her life is already dramatically limited by her brain disease/injury - why further limit it by denying her growing naturally into womanhood? Yes the extra weight can be burdensome, the periods are messy, the breasts might become problematic. That's all part of normal everyday life - you deal with it and if you can't hopefully someone will give enough of a damn about you to see that it is done for you. Certainly we're creative enough to think of ways to better protect and support severely disabled people without having to customize their bodies and short circuit their biology in order to make it more convenient and palatable for families and professionals. It smacks of A Brave New World utopianism. I can easily think of all sorts of ways to rearrange, prune and harvest all sorts of less than perfect humans (and domestic animals) for the comfort, care, convenience, efficiency and entertainment of the masses and disguise it as "medical treatment". When I really look at it I see that it was a sick an selfish decision.

[Creamzsoda]

You know in all honesty if it were me in the parents position I'd probably shoot her up full of morphine and let her go. Better for her, better for me.

Also, if I were/become a quadraplegic, I'd try to convince someone to off me in a heartbeat :ph34r:

Perhaps I have no feelings... oh well.

[Jezebel]

. . . Her life is already dramatically limited by her brain disease/injury - why further limit it by denying her growing naturally into womanhood? Yes the extra weight can be burdensome, the periods are messy, the breasts might become problematic. That's all part of normal everyday life - you deal with it and if you can't hopefully someone will give enough of a damn about you to see that it is done for you. . .

I'm curious why this disturbs you so much. What would have been the benefits to Ashley of reaching sexual maturity? Breasts and a uterus are for reproducing. They also come with a price. Even in a healthy adult, they have negative consequences (periods, breast tenderness, and being common areas for disease to develop). It's a worthwhile tradeoff because in return we can bear children and attract sexual partners. That tradeoff does not apply to Ashley. She would have all the discomfort (and much moreso than what we experience due to lack of mobility and not understanding why it is happening) without any of the benefits.

[PonderBee]

I'm curious why this disturbs you so much. What would have been the benefits to Ashley of reaching sexual maturity? Breasts and a uterus are for reproducing. They also come with a price. Even in a healthy adult, they have negative consequences (periods, breast tenderness, and being common areas for disease to develop). It's a worthwhile tradeoff because in return we can bear children and attract sexual partners. That tradeoff does not apply to Ashley. She would have all the discomfort (and much moreso than what we experience due to lack of mobility and not understanding why it is happening) without any of the benefits.

What is the benefit of allowing any single life to progress according to the natural plan? Life sucks and then you die right? Why bother at all? Why should you have been allowed to mature - is your life experience more qualified than any other to have been allowed to proceed into adulthood? The girl's ability to mature into adulthood is not a disease process and should not have been "nipped in the bud". This person's ability to experience life was severely limited by disease - why limit it further by cutting her off from a natural progression into whatever form of adulthood that her life experience would deliver unto her? Can you honestly say that periods and breast tenderness are so unbearable that the severely disabled should be protected from them? Many/most females report that they are thrilled by the metamorphosis into womanhood. I did not become a woman for the sole purpose of attracting sex partners and breeding offspring. The girl is not brain dead - she has cognitive function. She may appear outwardly as a "3 month old" but her experience may well reach far beyond that. Can you possibly find a way to quantify and define that the life experience for such a disabled person? She is more than a head on a stick. Why not line up all persons that do not measure up to a "our" minimal standard for normalcy and adjust their bodies similarly? It would be so much more efficient, pleasant and tidy, right? Why they might actually offer significant contributions via medical studies and such. The Nazi's had treatments for those that did not measure up to a certain standard - it appears to me that a lesson has been forgotten here.
Who should be given a gold star and be allowed to proceed without interruption and who should be poked and prodded? How do quantify a life worth living to its fullest potential?

[PonderBee]

Also, if I were/become a quadraplegic, I'd try to convince someone to off me in a heartbeat :ph34r:

In my view - that's your right, as it is your life to steer in whatever direction you wish. Could you really end the life of another though, at any given moment, knowing that they have cognitive function?

[Jezebel]

Her natural state would be to be dead right now. She is being tube fed because she can't even eat on her own. The only way to keep her alive is through artificial means. So unless you think she shouldn't be kept alive (this is a whole other issue I'm not getting into), her life cannot follow its natural course. The question is how much to intervene. Should it only be bare minimum to keep her alive, or should considerations be taken to also increase her comfort?

I think you're overestimating her cognitive function and I think this is the main point we disagree on. The reason she is being likened to having the mind of a baby is not because of her physical condition. Her brain reached a point that it stopped developing. This is not just based on observation of her physically. Brain development can be measured. We may not be able to tell exactly what she is thinking and feeling but it reasons that if a part of her brain didn't develop, then she isn't able to use that part of her brain. The parts of her brain that would allow her to have the cognitive function beyond that of a 3 month old baby did not develop.

There are in fact others with similarly severe phsyical disabilities who have higher levels of cognitive function. Those situations would have to be looked at differently than this one. Nor am I debating about disabled people in general.

With that in mind, I don't think she is lying in bed philosophizing on the meaning of life or what it means to be a woman, because babies are not able to do that. I think her brain is in a much more primitive state that reacts more on comfort vs discomfort than reason and thought. In this situation, I do think that maximizing comfort by minimizing physical processes that she won't need or understand anyway will increase her quality of life.

[PonderBee]

Her natural state would be to be dead right now. She is being tube fed because she can't even eat on her own. The only way to keep her alive is through artificial means. So unless you think she shouldn't be kept alive (this is a whole other issue I'm not getting into), her life cannot follow its natural course.
I never said that a person who requires medical intervention should be left to suffer/die by refusing artificial/supplemental medical support. Yes it is a whole other issue that you have introduced here.


I think you're overestimating her cognitive function and I think this is the main point we disagree on. The reason she is being likened to having the mind of a baby is not because of her physical condition. Her brain reached a point that it stopped developing. This is not just based on observation of her physically. Brain development can be measured. We may not be able to tell exactly what she is thinking and feeling but it reasons that if a part of her brain didn't develop, then she isn't able to use that part of her brain.

I disagree with the statement that I am overestimating her level of brain function. I don't think that there is an accurate method of testing this girl's level of cognitive function as she is unable to adequately respond to any tester's questions or prompts. Cognitive function is tested by observing reactions and reviwing answers to questions and prompts. I agree with you that we can not tell exactly what she is thinking and feeling.


The parts of her brain that would allow her to have the cognitive function beyond that of a 3 month old baby did not develop.



Can you truly know that in this case with a measure of certainty?

[OliverH]

I disagree with the statement that I am overestimating her level of brain function. I don't think that there is an accurate method of testing this girl's level of cognitive function as she is unable to adequately respond to any tester's questions or prompts. Cognitive function is tested by observing reactions and reviwing answers to questions and prompts. I agree with you that we can not tell exactly what she is thinking and feeling.



Can you truly know that in this case with a measure of certainty?

The parts for word concepts, for example, are very well known. You can study the activity of brain areas by observing metabolic activity. But in her case, the issue goes even further: She even has very limited motoric control, meaning that even those parts that steer those bodily functions don't work properly.

[Jezebel]

I disagree with the statement that I am overestimating her level of brain function. I don't think that there is an accurate method of testing this girl's level of cognitive function as she is unable to adequately respond to any tester's questions or prompts. Cognitive function is tested by observing reactions and reviwing answers to questions and prompts. I agree with you that we can not tell exactly what she is thinking and feeling..

Neuroscience is more advanced than that. I was thinking more along the lines of using magnetic resonance imaging and similar technology to study her brain development. The doctors don't even have to see her. They can tell which areas of her brain are active and what is dormant. By this they can measure how developed her memory, language skills, motor skills, etc really are.


Can you truly know that in this case with a measure of certainty?

Don't take my word for it, there are plenty of studies out there on how brain development is studied and it's actually rather interesting. I can accept it.

[PonderBee]

The parts for word concepts, for example, are very well known. You can study the activity of brain areas by observing metabolic activity. But in her case, the issue goes even further: She even has very limited motoric control, meaning that even those parts that steer those bodily functions don't work properly.


Neuroscience is more advanced than that. I was thinking more along the lines of using magnetic resonance imaging and similar technology to study her brain development. The doctors don't even have to see her. They can tell which areas of her brain are active and what is dormant. By this they can measure how developed her memory, language skills, motor skills, etc really are.

Don't take my word for it, there are plenty of studies out there on how brain development is studied and it's actually rather interesting. I can accept it.

Yes, there have been wondrous technological advances that allow us to measure levels of activity within the human brain. However, research has only recently begun to examine the cognitive development of children who sustain congenital or acquired brain injuries. The depth and breadth of the capacity and functioning of the human mind are largely unknown. The ability of a child to recover or to gain, by degrees, a measurable cognitive ability in these cases is largely unknown. There are equipment/tests that offer pictures of, electrical activity within, and chemical compositions w/in the human brain - but that does not tell what this girl's experience within her mind/spirit is anymore than a weather forecaster can tell you what is going on in your own home.

[rainfall]

I think we all should thank god for gift of life.

[OliverH]

There are equipment/tests that offer pictures of, electrical activity within, and chemical compositions w/in the human brain - but that does not tell what this girl's experience within her mind/spirit is anymore than a weather forecaster can tell you what is going on in your own home.

Sorry, but this to me seems more like pseudoscientific preaching, and not an assessment of the situation at hand.

A weather forecaster cannot tell you what is going on in your own home because A)he doesn't give a f*** about it, and B)doesn't look at it. Neither is the case with neurologists.

Like it or not, that electrical activity and chemical composition IS our thinking and IS our feeling -as evidenced by the fact that changes in it change the way we feel. Look at the effect of selective serotonin or dopamin reuptake inhibitors and other psychotherapeutic drugs. We CAN blunt emotions, so we can also see when emotions are underdeveloped.

Do we know everything there is to know about thinking, feeling and learning? No. But do you need to know every bit of detail of how a car works to determine something is broken, or is it enough to turn the wheel and see that nothing happens, to turn the ignitions and see that nothing happens, or switch on the headlights without any light coming out of them?

We have plenty of data, alas, from people who suffered brain damage in an accident. We have, alas, also the data from those people who were lobotomized. We know what the results are if specific parts of the brain are gone. So if those areas have never developped with this girl, we have a pretty good idea what the results will be.

Which is not to say that a specific conduct is indicated, just that we aren't half as clueless about her capabilities as you suggest.

[Jezebel]

Yes, there have been wondrous technological advances that allow us to measure levels of activity within the human brain. However, research has only recently begun to examine the cognitive development of children who sustain congenital or acquired brain injuries. The depth and breadth of the capacity and functioning of the human mind are largely unknown. The ability of a child to recover or to gain, by degrees, a measurable cognitive ability in these cases is largely unknown. There are equipment/tests that offer pictures of, electrical activity within, and chemical compositions w/in the human brain - but that does not tell what this girl's experience within her mind/spirit is anymore than a weather forecaster can tell you what is going on in your own home.

You don't know that she will be conscious of and enjoy the experience of womanhood any more than I know that she will only suffer from it. I simply believe the evidence we do have is pointing toward the latter. I do agree that we still have a lot to learn about brain function. However, I don't think we are so clueless that we can't tell when a brain is impaired this severly. Just because there is a possibility of something more that we can't see does not make it default to the right answer either.

I don't think there's much point in arguing about it though. I'm fine with your opinion but I don't think there is an absolute right or wrong answer in matters like this.

[JAVO]

I disagree with the statement that I am overestimating her level of brain function. I don't think that there is an accurate method of testing this girl's level of cognitive function as she is unable to adequately respond to any tester's questions or prompts. Cognitive function is tested by observing reactions and reviwing answers to questions and prompts. I agree with you that we can not tell exactly what she is thinking and feeling.

Can you truly know that in this case with a measure of certainty?

I once worked with neurologists, neurosurgeons, and neuropsychologists as an EEG tech in a large academic hospital. I agree that cognitive function tests are very limited in what they reveal.

See my recent post: http://forums.intpcentral.com/showthread.php?t=17843

[PonderBee]

Sorry, but this to me seems more like pseudoscientific preaching, and not an assessment of the situation at hand.

A weather forecaster cannot tell you what is going on in your own home because A)he doesn't give a f*** about it, and B)doesn't look at it. Neither is the case with neurologists.

Like it or not, that electrical activity and chemical composition IS our thinking and IS our feeling -as evidenced by the fact that changes in it change the way we feel. Look at the effect of selective serotonin or dopamin reuptake inhibitors and other psychotherapeutic drugs. We CAN blunt emotions, so we can also see when emotions are underdeveloped.

Do we know everything there is to know about thinking, feeling and learning? No. But do you need to know every bit of detail of how a car works to determine something is broken, or is it enough to turn the wheel and see that nothing happens, to turn the ignitions and see that nothing happens, or switch on the headlights without any light coming out of them?

We have plenty of data, alas, from people who suffered brain damage in an accident. We have, alas, also the data from those people who were lobotomized. We know what the results are if specific parts of the brain are gone. So if those areas have never developped with this girl, we have a pretty good idea what the results will be.

Which is not to say that a specific conduct is indicated, just that we aren't half as clueless about her capabilities as you suggest.


I have not been preaching. I simply stated an opinion with which you vehemently disagree. You state a point and I a counterpoint - am I not allowed an opinion or the opportunity to voice it? I state my opinion and am therefore guilty of pseudoscientific preaching?! Not only do you come off as a narrow minded elitist snob - but simply rude.

Your opinion and Jezebel's are rooted in an operational definition of conciousness and you've each stated your opinions and disfavor with my opinion based on the fact that raw data that can be gathered via empirical testing of brain function. Yes, you are correct. I've acknowledged in several posts on this thread that many aspects of brain function are measurable thru various scans and exams.

However, my view is founded in a philosophical definition of conciousness. In my view there is no clear definition of consciousness and no empirical tests exist to measure it as it can not be isolated and quantified.


Should individuals be rearranged to better fit into the lives of others, to exist in a more convenient and comforting manner for their families? When someone has a high spinal cord injury and becomes quadriplegic - should we similarly adjust their bodies in order to prevent bed sores and make them more portable for mom and dad? I liken this case to selective breeding for size or pruning a maple tree into a bonsai. This is a case of a human being. Her life is already dramatically limited by her brain disease/injury - why further limit it by denying her growing naturally into womanhood? Yes the extra weight can be burdensome, the periods are messy, the breasts might become problematic. That's all part of normal everyday life - you deal with it and if you can't hopefully someone will give enough of a damn about you to see that it is done for you. Certainly we're creative enough to think of ways to better protect and support severely disabled people without having to customize their bodies and short circuit their biology in order to make it more convenient and palatable for families and professionals. It smacks of A Brave New World utopianism. I can easily think of all sorts of ways to rearrange, prune and harvest all sorts of less than perfect humans (and domestic animals) for the comfort, care, convenience, efficiency and entertainment of the masses and disguise it as "medical treatment". When I really look at it I see that it was a sick an selfish decision.

[rainfall]

If rainfall tried his outmost to be serious on this matter, he'd say that it would be better to either kill her completely or to give her best care possible. Getting cut up and modified into a freak does not qualify for best care in rainfalls opinion. Either croak the poor thing or don't fuck with it anymore. Why turn a mindless fruit in a political discussion?

[airjaw]

Surprised no one posted this yet. For what its worth, I'm entirely against stunting her growth. I just don't think you mess with things like that, not someone else's life. But its a very complex and complicated issue. What do you guys think?

Activists Protest Girl's Stunting
Thursday, January 11, 2007 7:08:33 PM
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CHICAGO(AP)


Activists are demanding an investigation into treatment performed on a severely brain-damaged girl whose growth was deliberately stunted to make it easier for her parents to care for her at home.

Critics want an official condemnation from the American Medical Association, which owns a medical journal that first published the Washington state case. They also want state and federal officials to investigate whether doctors violated the girl's rights.

"It is unethical and unacceptable to perform intrusive and invasive medical procedures on a person or child with a disability simply to make the person easier to care for," said Steven Taylor, director of Syracuse University's Center on Human Policy.

Taylor said that the treatment was essentially a medical experiment and that a hospital institutional review board should have been consulted beforehand.

Complaints have been filed with the federal Office for Human Research Protections. But Kristina Borror, a director at the office, said Thursday her agency does not believe it was a research case and thus has no authority to investigate.

The case has prompted an outcry nationwide and abroad since the bedridden girl's parents disclosed details of the treatment on a blog last week.

The girl, identified only as Ashley, had surgery in 2004 to remove her uterus and breast tissue at a Seattle hospital and received growth-stunting hormones. She is now 4 feet 5, about a foot shorter than the adult height she probably would have reached, her parents say.

Ashley suffered brain damage from an undetermined cause that was diagnosed shortly after birth, leaving her in an infantile state. She cannot sit up, walk or speak. Her parents say keeping their little "pillow angel" small will allow them to continue caring for her at home even when she is an adult.

Her treatment also will allow her to avoid menstruation and related discomfort, as well as breast cancer, which runs in the family, her parents say.

The girl's doctors at Children's Hospital and Regional Medical Center in Seattle described the case in October's Archives of Pediatrics & Adolescent Medicine.

Dr. Richard Molteni, the hospital's medical director, said there was no need to consult an institutional review board because Ashley's case was not an experiment. He said the hospital firmly believes it acted in her best interest.

The decision to proceed was "thoroughly reviewed by a wide range of medical and surgical specialists, including neurologists, development specialists and ethicists," Molteni said.

The Washington state attorney general's office said it is evaluating a complaint from a New Jersey disabled-rights activist. The state has no laws prohibiting forced sterilization.

Feminist and disabled-rights groups are also demanding an AMA ethics committee look into the case.

"This is an issue of basically subjecting a child to drastic physical alterations to fit the convenience of her caregivers," said Stephen Drake of the suburban Chicago-based disabled rights group Not Dead Yet.

Amber Smock of Feminist Response in Disability Activism said the AMA sanctioned Ashley's treatment by allowing the report to be published. The journal is owned by AMA but has an independent editorial board.

The AMA issued a statement saying it "does not have policy pertaining to the medical treatment referred to as the 'Ashley treatment.'" It also said that under the AMA's ethics code, medical decisions about incapacitated patients should be based "on the best interest principle."

About 25 protesters, some in wheelchairs, demonstrated outside the AMA's Chicago headquarters Thursday, chanting, "Accommodations, not operations."

"As far as I'm concerned, it was mutilation," said Donna Harnett, 42, who brought her brain-damaged 10-year-old son, Martin, to the protest.

Dr. Frederick Rivara, the journal's editor, said he published the case not out of support or opposition, but to bring it to doctors' attention "and to have exactly this kind of discussion in the scientific community about is this the right thing to do or not."

Ashley's parents have not been identified and have declined media requests for interviews.

[mancroft]

I think it's a good idea because it will make it a lot easier to look after her when she gets older.

[Aganoth]

What is the benefit of allowing any single life to progress according to the natural plan? Life sucks and then you die right? Why bother at all? Why should you have been allowed to mature - is your life experience more qualified than any other to have been allowed to proceed into adulthood? The girl's ability to mature into adulthood is not a disease process and should not have been "nipped in the bud".

Who says? Consider this: With our new and advanced society, we have killed natural selection (Its a theory, I know). Instead of the defective models dying off, we have found new ways to keep them alive and thriving.

So is her 'condition' a disease of sorts? It sounds heartless to say, 'She's junk, throw her out,' and mean a living being, however, the world is nature is heartless. The question is: Would you like to be her daughter? 50 generations down the line, do you want Ashley's genes? Maybe you can't catch balls or can't write well. Maybe her line is normal except for a higher chance of mutation?

And you have to admit, Natural Selection would have thrown her out. Throw her in a field of steaks and water bottles, she'd still die.

[JAVO]

There's a thread on this over at the Science and Health forum.

[Jennywocky]

There's a thread on this over at the Science and Health forum.

Yeah, it was posted right before I saw the story break in national news (ABCNews, etc.)

Not sure how I feel. There are lots of good reasons to do it; but it still feels like a violation.

[Rajah]

Surprised no one posted this yet.


Me too.


Oh wait, someone did.


Merged.

[INThoughtPolice]

whenever you try to "swim against the flow" with nature, it is bound to be problematic.

As humans are part of nature, the thoughts or actions of human beings may never be "against the flow" of nature. This is why I support development and use of medical advancements.