Originally posted by lauseyOf course they have much more information to base their decision on. But working in the field has made me quite disenchanted when it comes to the knowledge and ability to make the right decisions of medical professionals. With the little knowledge I have about this specific case, it seems that they have a lot of valid arguments, so their decision may very well be right. But I don't buy into the argument "I am sure the medical professionals / the parents know best".
You are right that we can never be 100% sure what decision is correct. Also in hindsight a lot of bad decisions have been made (which, in turn, improves our knowledge for future decisions). We all still have to make decisions based on our current knowledge though, otherwise we wouldn't progress.
Medical professionals and parents that know about this case i ...[text shortened]... is best in their hands about what decision to make.
* Us discussing it here in this thread.
Originally posted by XanthosNZShe'll be deprived of the opportunity to grow up physically, and possibly as a consequence of that also the opportunity to grow up mentally to the same degree she would be able to if she'd grow up physically. I also don't know how much is known about possible risks and adverse effects of the treatment - I doubt there's sufficient research, as it's not something done routinely. But I may be wrong about that.
So what exactly is Ashley being deprived of by this operation?
Originally posted by NordlysIt's called 'static encephalopathy' for a reason: is doesn't change. People afflicted with this
She'll be deprived of the opportunity to grow up physically, and possibly as a consequence of that also the opportunity to grow up mentally to the same degree she would be able to if she'd grow up physically. I also don't know how much is known about possible risks and adverse effects of the treatment - I doubt there's sufficient research, as it's not something done routinely. But I may be wrong about that.
condition do not improve as a consequence of 'growing up physically' nor is there any reason
to believe that their condition will worsen if they are prevented from doing so. There is nothing
that can be done to improve her current mental state. That she will be deprived of the opportunity
to grow up physically is contingent on her being rewarded by that opportunity. It's like in 'The Gods
Must Be Crazy:' it's meaningless to hand money to an aborigine with no contact with Western
culture; the gesture only has meaning within the recipient's capacity to understand it. Ashley will
never, under any circumstances, derive any benefit from 'growing up' because she lacks and will
always lack the capacity to appreciate it.
The risks of hysterectomies and mastectomies are well established. We know what they are with
great precision.
So, once again, we are faced with: What harm is being caused? None. What benefits are being
provided? Some. Are her interests being respected? Absolutely.
To say 'There might be something that we cannot predict that might happen in some way maybe,'
isn't an argument, because there are things that do happen that we can predict that can
be prevented by these surgeries. Yes, it is medicine's best guess, but it is not a blind guess, but an
educated one with calculated risks and rewards. That the latter outweigh former is what mitigates for
performing this operation.
Nemesio
Originally posted by NemesioGo back to my post about "mental age". We know very little about her mental state or her potential of mental growth. Generally, we still know very little about how the brain works, despite all the progress that has been made (ask any neurologist). The reports of people who have learned to communicate about the time when they couldn't are usually widely different from and often completely contradictory to what medical professionals believe. So what you present as a fact - that she won't develop mentally in any way - is just an assumption, and I don't think it's likely, even if we know with some certainty that there are a lot of things she'll never be able to do.
It's called 'static encephalopathy' for a reason: is doesn't change. People afflicted with this
condition do not improve as a consequence of 'growing up physically' nor is there any reason
to believe that their condition will worsen if they are prevented from doing so. There is nothing
that can be done to improve her current mental state.
As I have said before, from the information I have it still sounds like the decision may be the best possible guess. I just don't share your certainty or your apparent belief in the expertise of all medical professionals.
Originally posted by NordlysMakes sense to me. 🙂
Of course they have much more information to base their decision on. But working in the field has made me quite disenchanted when it comes to the knowledge and ability to make the right decisions of medical professionals. With the little knowledge I have about this specific case, it seems that they have a lot of valid arguments, so their decision may very we ...[text shortened]... I don't buy into the argument "I am sure the medical professionals / the parents know best".
Originally posted by Nordlys
Go back to my post about "mental age". We know very little about her mental state or her potential of mental growth. Generally, we still know very little about how the brain works, despite all the progress that has been made (ask any neurologist).
This same argument could be made for dozens of fields within
medicine: cancer, hormones, blood studies...you name it. That we
know relatively little about the brain doesn't mean that we know
very little. We have indeed come a long way and even a 5%
understanding of the brain is a rather a lot of absolute knowledge.
So what you present as a fact - that she won't develop mentally in any way - is just an assumption,
I am presenting an informed assumption based on the best possible
or reasonably fathomable knowledge available to us. In cancer
treatments, it's possible that some of the chemo we are using
actually results in resistant cancer, but we're pretty sure that's not the
case.
It's always a risk to utilize medicine. We simply have to use the
medicine as responsibly and sensibly as we can.
Your objections to these surgeries rely upon the possibility that
something we don't know yet might surface. Since there are an
infinitude of possibilites, and even a handful of distant probabilities,
but a given number of reasonable certainties, I think the best choice
is to stick with that which we do know: the reasonable certainties.
and I don't think it's likely, even if we know with some certainty that there are a lot of things she'll never be able to do.
What is the basis for thinking that it is likely that her mental state
will improve at all, given that what we know about static encephalopathy
suggests that her state will not change? Even granted that her condition
might change, what is there to suggest that it would change to the degree
that would make having a uterus and breasts a meaningful thing rather
than a significant discomfort?
As I have said before, from the information I have it still sounds like the decision may be the best possible guess. I just don't share your certainty or your apparent belief in the expertise of all medical professionals.
I do not have absolute certainty about it. I, like the medical community,
simply have access to the best possible data (within the confines of
what can be reported in the news, of course). There would be no
meaning in having 'believe in the expertise of all medical professionals'
because two medical professionals can have well-justified anti-thetical
views on a topic we know too little about to make a clear judgment.
I have weighed the information that we have been provided as best as
I can. I am opened to the possibility that I have weighed it improperly
or that I have failed to take into account some data. As I have said
a few times now, a reasonable argument against such a procedure
must focus on the quality of life of Ashley (to the degree that we can
guess). As far as I can tell, this argument must 1) demonstrate that
Ashley will not benefit from such procedures; or 2) that she will be
harmed more than the benefit.
If one's claim is that we shouldn't do these procedures because maybe
at some point in the indeterminate future we might know more about
the condition that would call into question the degree to which it is
static (and there is no reason to believe this), then all controversial
procedures on all obscure illnesses wouldn't take place.
Sometimes in medicine, you have to make calculated rolls of the dice,
and sometimes they turn out to be bad rolls. There is no way to know
this in advance and, simply because there is a remote possibility that
this might be a bad roll doesn't mean we shouldn't roll it, because there
is a good possibility that it is a good roll.
Nemesio
Originally posted by NemesioI was not outraged with the parents decision my post was more in response to other posts. Yes, i used the word assault because it is appropriate terminology in a medico-legal context until such time consent makes it a legal act. but this was more a general reference to arguments that because somebody is not aware of what is going on or they are not going to be using certain organs then it is ok to take this type of action. I thought the better assertion would have been to stick to the medical benefits, which has been stated in some posts, such as a history of breast cancer. Not having a medical background i don't know that the other benefits are justified.
Originally posted by chrissyb
[b]I agree. Just because somebody is mentally unaware of their body or surroundings it does not justify an assault to the body. However, i recognise that they claim to have researched this thoroughly i only wonder whether there was an independant advocate who acted absolutely, in the interests of Ashley.
Nothing ...[text shortened]... to make more informed decisions
regarding their own situation.
Nemesio[/b]
The sexual assault - side issue or not, it is too weak an argument and i wouldn't put it up as one, and it had been. this happens anywhere and everywhere. if anything, i would think sexual assault against children with disabilities is more likely to happen on a lesser scale because there are harsher penalties for this conduct (if i recall this was the case in the Northern Territory). i would assume this is because it reflects moral outrage in society to take advantage of the more vulnerable. (this is in no way meant to lessen the importance or outrage of sexual assault of children in general).
Re Ashely treatment setting a precedent - i meant disabilities in general. I have nothing against medical advancements and who wouldn't welcome it. My concern was that the Ashley treatment may be seen as a solution to a bigger problem (govt. funding) and parents opt to stunt their child's growth so that caring is made easier. Some people are for that, so be it, i was merely registering my concern.
Yes, there may be benefits to Ashley, certainly the breast part because of possible cancer. But re-reading the article it looks like there are also just as much benefits to the carers and medical profession (recognition - an old treatment but supposedly more appropriate for people with disabilities), everyone is a winner. like i said previously i just hope there was an independant advocate concerned only with her absolute interest at hand. There are numerous types of equipment and a number of services whose role it is to ensure these needs are met. Costs? In most cases that can be overcome with a co-ordinated effort between families, services and charitable organisations.
There are plenty of parents who find it difficult to accept their child's disability. There are also parents who put their child's interest at risk and opting out of surgery for fear of a fatal result. In the same token, there are also those parents who will cope the best they can and only seek medical intervention/surgery if their child's life depended on it.
that's my 2c worth.
Originally posted by chrissybWhile I certainly wouldn't advocate a treatment that harms the patient so that the caretakers would
Yes, there may be benefits to Ashley, certainly the breast part because of possible cancer. But re-reading the article it looks like there are also just as much benefits to the carers and medical profession (recognition - an old treatment but supposedly more appropriate for people with disabilities), everyone is a winner.
benefit, there is nothing wrong with everybody's benefiting. That doctors benefit seems the least
significant factor, but that the parents would benefit is to Ashley's benefit as well. An action
that doesn't harm Ashley and helps her parents makes it such that Ashley gets better care.
That's not to say that convenience should be a first-order consideration. It shouldn't. However,
once it is determined that there is no reasonable chance of harm to Ashley (risks of surgery or
that she will have a diminished quality of life), the caretakers do deserve consideration. Anything
that allows them to provide better care means that Ashley's quality of life will be improved.
That everyone is a winner simply doesn't bother me. If someone wants to demonstrate how
Ashley loses from these surgeries, I'm all ears.
Nemesio
It looks like some of the more salient points have finally surfaced. This is a touchy subject that can cause emotions and tempers to run high.
I have 5 children, all basically healthy, active people. The youngest is 17, the oldest 29.
In looking into this case when it first surfaced, I was initially against the procedure because it seemed to be mostly for the convenience of the parents. As I have looked deeper into the issues, I'm not so sure anymore.
Because Ashley is roughly the intelligence of a 3 month old human, she has virtually no concept of anything. How much is a 3 month old human capable of without assistance?? She certainly has no concept of life and death. It is highly unlikely that she has more than a warped concept of pain and pleasure. It is likely that if the concept is more complex that hunger, she is incapable of understanding it.
As for the "treatment" being performed, she will never understand either way of life, which implies that it is NOT in her best interest since she has no interest.
However, since we have decided that we are able to judge her quality of life, then if the "treatment" makes if easier for the parents to continue providing the primary care, then it must be in her best interest to have people that love her able to provide for her.
These two points make up the bulk of the rational debate.
There is a third perspective. What if Ashley was a dog, or a gazelle?? What if, as an animal, she would only develop the survival skills of a 3 month old in her respective species?? What would the correct response be then??
In nature, the "baby" would almost certainly be killed. Either by other predators, or by the parents themselves, or by an accident. In birds, we see the parent push a weak baby from the nest to allow a stronger baby a better chance at survival. It is commonly called "survival of the fittest". The continual weeding out of the weakest makes the whole species stronger by reinforcing the genes that allowed a particular creature to survive.
Are Ashley's parents able to have more children??
Why do they wish to spend their entire lives tending to the cares of a human that can not add to the strength of the species??
Why don't they allow this child to perish and attempt to have a more normal child??
These emotional issues must be taken into consideration in moral and ethical discussions. They can not be dismissed just because they are emotional. Would I wish one of my children a life like Ashley's?? Of course not. Is there a chance that Ashley is unable to think rationally in terms of human, but that she is a highly intelligent thinker in some other unknown plane of awareness?? Unlikely.
In my feeble opinion, if the parents have determined that they will provide the primary care for Ashley, and Ashley is basically unaware of the medical actions to be performed, then she comes out ahead if her care is easier on the caregivers.
My main objection is the cost of her "treatment". Who pays for it?? An insurance company?? If so, then we all pay for the care of a human that will never provide anything but moral satisfaction, and the thickening of doctors and lawyers wallets. If the parents were made to pay the costs of her care and "treatment", I wonder how long she would survive. I wonder how long till the parents would be released from the burden of care so they could attempt again at propogation of the species.
I don't know who should "play God" and decide which of us is worthy of living. But, either way, those that survive and procreate have a chance of strengthening our long term survival odds.
Putz
Here is an extract from Ashley's parents' blog (http://ashleytreatment.spaces.live.com/blog/) which quotes an email from some people with experience of people who live with the same conditions as Ashley:
Dear Ashley's Mom and Dad,
Ashley is a beautiful young girl and lucky that God blessed her with the 2 of you for her parents. I am a special education teacher and I work with severely disabled students; many of whom are like Ashley. My students are now between the ages of 18 and 20 years old and I see the pain the females go through every month when they have their menstrual cycle and how difficult it can be for all of them to find comfort in their wheelchairs. I also hear (and see for myself) how difficult it is for the parents to care for them given their size and weight. Transferring takes a minimum of 2 adults in the classroom, even with special lifts. I honestly don't know how parents do it on their own and I admire their courage and strength. I am sure you have already heard your fill of negativity about the procedures Ashley has gone through and I am also sure that the majority of those do not have a severely disabled child or have an inkling of what these special angels go through on a daily basis. I commend you on your decision to do what is in your power to help your daughter and to have taken the time to describe the details on your web site. You have saved her unnecessary pain and stress and improved the quality of her life as well as your family's. Ashley will be in my thoughts and prayers. God bless all of you.