Although I thought about making a post about the refusal of the corrupt earmark system to just die already, I think something more in my scope of interest is the current ethics debate regarding a severely mentally handicapped child. Specifically, her parents have opted to surgically stunt their child's physical development to prevent puberty (hormones, menstruation, growth, etc) and to keep her weight at a level that they can manage. She is currently 9 years old, and has the mental capacity of a 3 month baby--she can only lie on her back and kick her legs/arms around. She relies on her parents and grandparents for every aspect of her care, from feeding and bathing, to even removing an itchy piece of lint from her eye. There is no prognosis for ever improving (she has static encephalopathy), however her lifespan will be that of anyone else, meaning that someone must care for her every need for the rest of her life.
The surgery entailed a hysterectomy and breast bud removal, as well as estrogen supplements to arrest growth and development. She was in the hospital just 4 days, and was completely healed within the span of a few weeks. Her parents say that this surgery will ultimately drastically improve their daughter's quality of life, who they can now care for until the end of her (or their) days and will spare her the turmoil and pain of going through menstrual cramps and hormone fluctuations which she would not be able to comprehend. So, she will be forever the size of a 9-year-old, about 4'9 and 65 pounds. Critics are decrying the surgery, saying that her parents have essentially denied her the right to grow up and become an adult, and that the surgery will cause unnecessary pain to the girl just to suit the parents' convenience. Who's right on this issue?
(More below the fold.....)
First, a bit about the girl's disease, as many of the detractors are from the "well, what if she gets better?" or "what if medicine advances to cure her?" camps. Static encephalopathy represents a fundamental problem with how a child's brain developed in the womb, in that it has formed abnormally and therefore is not capable of "working" like a normal brain. This abnormal development means that the child is born with a permanently mal-formed brain. This is an condition that medical therapy as we know it now will never be able to correct in any of our lifetimes. The reason for this is that diseases can be corrected, as long as some semblance of the normal structure remains intact. For this little girl, her brain structures either aren't there or are so abnormal as to be non-functional, which is a situation that even the most optimistic of stem cell biologists could never hope to correct.
Reading the new stories about the family's predicament, it is obvious that her parents love her very much and are dedicated to making what life she is capable of experiencing the best that they can manage. It is admirable that they have taken this point of view, and to me it seems that the therapy (while causing the short-term discomfort of surgery) will help provide her a lifetime of continued high-quality care. I believe that they are doing what they can to include her in their lives and keep her happy, without impacting her life in a seriously negative way. Will a child in a permanent vegetative state miss the breasts she never knew existed or the children she wouldn't be able to care for?
The decision was also approved by the hospital's ethics committee, which included doctors as well as lay people, before the surgery could go forward.
"In reality, Ashley being smaller means that she will be moved more, that she will be held more, that she will be bathed more. All of these things are inherently good for Ashley herself," Dr. Daniel Gunther, the pediatric endocrinologist who oversaw her treatment, said in an interview. The hospital's ethics committee approved the treatment.
"I understand how people have an initial visceral reaction to this that is negative," Dr. Gunther conceded. "But if people step back and really start thinking about what is best for this child and what is in her best interests, I think many people will come to the conclusion that this is a relatively low-risk procedure with a great deal of benefit for the child."
To me it seems less about what is happening to this little girl, and more about the largely grey area of what a nearly brain-dead person's rights are. What happens when the onus to care for such a person, which will be draining in every imaginable way from financial to emotional to physical, falls upon family members? Hopefully they will love and care for the person as best they can, but shouldn't the caretaker's needs have some consideration as long as it does not negatively impact the brain-dead patient? A lot is being required of them, perhaps they should not be dismissed offhandedly.
The girl's doctor quoted Issac Asimov, "Never let your sense of morals get in the way of doing what's right." This is a tricky issue, but in this case I believe the parents did the right thing. However, I would not agree that such a procedure be done on a person who had full mental faculties (unless they consented), because in that case the deprivation of an adulthood would impact them negatively. It is difficult to say when such a cut-off might occur (as in, what really qualifies as "brain-dead"?). But I suppose that it is best left up to the parents, doctors, and ethics committees to decide, as it stands.
What do you think?
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In my opinion, the limitation of the right of parents to make decisions on behalf of their children in most cases is predicated on the child one day becoming a full moral agent. In such cases, the parents can act on reasonable presumptions about what that full moral agent would've chosen retroactively for him or herself. This can apply to rather profound surgical interventions, such as the surgical assignment of babies of ambiguous sex to one or the other sex or the separation of conjoined twins (both of which are procedures, it seems to me, are as broad and deep in their effects on the eventual adult[s] as anything that has been done to Ashley).
In this case, though, there is no expectation of Ashley ever becoming anything like a moral agent in her own right, and so I think that there should be considerably fewer limitations on what might be a reasonable choice of medical interventions made by her parents on her behalf. And I think the treatments chosen are clearly in the interests both of Ashley herself and her parents.
(Most of the objections, in my opinion, stem from a dualistic belief that somewhere in there is the "real" Ashley, a full person in every moral sense despite the current and future state of her brain.)
IMO, there is NO right or wrong here.
It is unquestionably a difficult decision, and in my mind analgous to the Terry Schiavo situation, and unfortunately Ashley will never grow out of her condition either. As I understand this, the surgery makes it easier - by degrees - because this will never be easy - to take care of Ashley. The poor parents - and Ashley - are only left with decisions about what is possible and what is not.
If I weren't an atheist, I would be one pissed off M_F at god though...
Excellent post Shelley. I agree with you.
Now for the really tough question that everyone wants to avoid. What if the parents wanted to terminate her life?
I'm going to refrain from pointing out other possible modifications (short of Larry's scenario) and focus on what Rich suggested, about how "Most of the objections, in my opinion, stem from a dualistic belief that somewhere in there is the "real" Ashley . . ." This may be, but I think another reason (of many) is the very specific nature of what they decided to do. From an outside perspective, and without similar experiences, what jumps out maybe aren't the stated intended outcomes (will allow for better care) but simply the results - keeping her small and preadolescent. Generally this would be a big warning sign, and I think this reaction is being carried over into a situation where it may not be appropriate - without necessarily getting all dualistic, without necessarily explicitly or implicitly thinking about a "real" :( Ashley?
Now, what about a somewhat similar -hypothetical- situation involving a boy being neutered?
The operation is really none of our business. Arguing the morality of the personal decisions of complete strangers after the fact doesn't serve much purpose.
One could argue that it's important to think about this kind of thing in order to tune your moral compass for when you're faced with difficult decisions. But the media knows that controversy lies under the sheets on the bed of morality, and its controversy they're selling. Supply and demand thrown in reverse therefore dictates that it's not the morality that gets people interested.
The parents are the ones taking care of her, and unless I'm willing to take over for them i'm not going to start disparaging their decisions. Their Blog. It just seems like a bunch of sensationalism to me, better to work on a problem you can fix.
And even more hypothetically: what if it were possible to engineer embryos so they would develop so far and no further? I don't think that would be acceptable, but I'm not entirely sure why not. (Also, I'm not sure who'd actually want a perpetual toddler...)
I have a mentally handicapped child (30 YO now) who is functionally about a 2 - 3 YO level. Her case is far different than Ashley's but its bad enough.
The people who criticize this never have to think about carrying a full grown Ashley in their arms everywhere- the toilet, the bath tub, the kitchen table, the doctor...
I think they did the right thing for her.
I hope this does start a serious debate about caring for profoundly handicapped people. As our ability to keep people like Ashley, my daughters and others alive the funding and the programs to help them and their parents/caregivers seem to get cut every year. What do people suppose her parents are going to do.
Richard
From her photo posted on the internet, I don't think she's totally brain-dead and there's some way to know, make a movie of her events in life and project them on a TV or something while she's undergoing a PET scan or an fMRI.
The problem is that we need a way to quantify the brain activity and correlate it to some useful though in order to really know her life potential; after all, Eric Kandel was able to inject some behavioral intelligence in aplysia and countless many researchers are working with mouses so I fail to see why a brain at least (physically) 10 times as big can be diagnosed as having less potential than a mouse brain (for her handicap, i'd look at the CNS to see how it's behaving).
I must say that I'm biased but that's because I have often been at the receiving end of schools, medical and ministerial (is that a word?) policies and I've paid more than my fair share to be at university today. Does that mean I shouldn't be able to go in university (and in fact, upon knowledge of my dx, a professor did ask me what I was doing in an university...)
In the case of Ashley, perhaps she would have wished to have these surgery but given that we don't know, i'd suggest leaving the can of worm closed until we've exhausted all the way we can thing off to devise informed consent or else, in my opinion, major clusterf*ck happen too often otherwise.
Alain
I think the parents have every right to agree to this surgery. It will greatly improve the child's quality of life and will prolong her life. The more mobile she is, the reduced risk of bedsores, pulmonary emboli, pneumonia etc. I don't know why there is such controversy over what is essentially a life-saving course of action. We don't seem to have these dilemmas over administering chemotherapy to a newborn with leukemia, despite the risks and suffering associated with it. What is the difference in this case?
If the kid has the same disease or symptoms, I cant see why anyone would object. In both cases, it looks like the poor fellows are not even as smart as a buffalo or cat--both animals can care for themselves, and move of their own free will. If I am correct on the idea that a cat could be argued to be smarter than him, and you have no problems with neutering a cat, how could you object to doing the same to the boy? The cat would probably be much more distressed by being neutered than the boy ever could.
In response to Alain: thank you for posting, but I must say that its immensely irresponsible to say that, despite what her diagnosing neurologists have said, *from her picture* she doesn't look brain damaged. There is no debate on this issue, even from detractors. She is permanently brain damaged, and has already been run through every test possible (as any concerned parent would). Someone else has linked their blog, read it yourself. I understand wishful thinking, I'm sure her parents understand all too well, however there somes a time when only reality can help an injured child and that is the mature course of action.
I don't know the full details but I think the parents are also worried about some dirtbag raping their daughter. I assume she would be able to get pregnant.
If the potential burden to the family is being considered, it could have been the wrong decision if the hysterectomy surgery permits Ashley to live a longer lifespan.
From your description of her condition it seems that if by some series of astounding events we acquired medical technology within her lifetime able to 'heal her brain' then 'repairing the surgical damage' would be a comparatively trivial accomplishment.
Hi Shelley, you can call me irresponsible for failing to provide the evidence behind my reasoning and I did look at Ashley's blog yesterday, here's some quotes from it:
Over the years, neurologists, geneticists, and other specialists conducted every known traditional and experimental test, but still could not determine a diagnosis or a cause
I can accept that they don't know what she has.
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).
Can we call that brain-dead ?
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.
or this ?
I don't deny the brain damage but she's aware of her surrounding, whether this is consciousness remain to define and that's where the problem lie.
now regarding the wishful thinking, Dr. Laurent Mottron from Montreal university presented a poster at IMFAR about autistic intelligence from which i'll quote:
R.G. an autistic male (15yrs) with very sparse speech (i.e. considered "non-verbal") has performance near floor (0.1%ile) in Wechsler FSIQ, combined with performance near ceiling (95%ile) in RPM (Raven's progressive Matrix).
It has been argued that verbal ability are essential for success in all but the simplest RPM items (Lohman 2005). Yet R.G., labelled "non-verbal" performed near ceilling in RPM. The same kind of discrepancies are likely to exist throughout the autistic population.
The poster is here: http://www.sentex.net/~nexus23/imfar.pdf
the page leading to the poster as well as more information (including all the quotations) is here: http://www.sentex.net/~nexus23/naa_imfar.html
The last time i heard about Dr. Mottron, he was setting up a double-blind study with controls, verbal autistics, non-verbals and i think asperger too but it hasn't been published yet.
now i know i shouldn't extrapolate such finding with Ashley's situation and I do wish that she end up in the best situation possible but I still have concern about the ability to create a precedent out of the case.
Alain
Dr. Mottron's webpage (there's a good number of his publications listed): http://www.psychia.umontreal.ca/recherche/chercheur/mottron.htm
Lohman, D.F. (2005). The role of non-verbal ability tests in identifying academically gifted students: An aptitude perspective. Gifted Child Quarterly, 49, 111-138.
This is a tough one, and it hits close to home. My 4-year old son also has a severe brain malformation (porencephaly), and has the mental and physical capacities of a 1-year old (give or take). I'm very, very worried about his future, and what it will hold. We will have to take care of him for the rest of his life, and we're already running into some problems. I can most certainly relate to the parent's dillemma. I'n not there yet, but maybe in a few years, I will be seriously considering such a reaction. He is already getting a bit heavy for me to bathe, give diaper changes, put to bed, etc. I suppose, overall I would support their decision, and I can imagine it cannot have been an easy one to make. It's very hard to admit that your child will not improve, even though you may know it in your heart. Sometimes even simple things turn difficult. For example, I had the hardest time filling out a form to apply for a handicapped parking permit. Yes, I know my child is permanently disabled, but actually putting it in writing, and placing my signature underneath it, was very hard. Putting your signature to give consent for a surgery like this must be pure torture. But ultimately, maximizing the quality of the child's life is the most important factor, however drastic the measures may seem to the general public.
What I find interesting thing about the debate (in the traditional media and on the net) is that there's an acknowledgment of an ethical dilemma, but there doesn't seem to be any consensus on where that dilemma is located, what is at focus, or at stake.
To be frank, my initial (gut) reaction (and apparently that of others) involved that word 'eugenics'; which is surprising (and not very helpful) since I cannot, rationally, and in retrospect, see how this issue could be made to fit that particular model. And if I interrogate that reaction, I think a small part of the problem has to do with the unfamiliar, 'ickiness' of the issue, and a large part to do with our collective guilt for not building support structures for carers, for our societal complicity in making 'disability' invisible, and fear that, if we were in the same situations as the carers, we would be wishing for the much, much worse....
Alain's comment was a little too "Frist-like" for me. Just looking at someone tells you almost nothing about what's going on inside his/her head. That being said, my intial reaction to this story was negative, not knowing the full extent of her condition. Having read the post and some of the comments here, I think I agree with the parents decision, although the idea still creeps me out (to put it bluntly). It sounds like her parents did their homework and really thought this out. I was afraid there was some woo-woo/religious nuttery factor going on here, but I'm glad I'm wrong. I wish them all the best.
I think you hit the nail on the head, tig- the reason that there's any question about the ethics of this situation is precisely because of how unusual it is, and because it definitely brings to mind eugenics. I think this is a case of culture lag in action. We've gotten to the point where we can do things like this, now, but it's come up so few times that there doesn't seem to be agreement on how far we're willing to go, or how far it's okay to go. I'd bet that most people, after thinking about it for a little while, will agree that this case is probably for the best. It improves her quality of life while also making it substantially easier for her parents to care for her. That's a win-win.
I think that Rich hits on another point that might bother some people: what if it were possible to engineer embryos so they would develop so far and no further? I don't think that would be acceptable, but I'm not entirely sure why not. (Also, I'm not sure who'd actually want a perpetual toddler...)
It's not a perpetual toddler that I bet most people would think of, though. What if you could (and I recognize the sci-fi ridiculousness of this) halt development at, say, the level of an 18 year-old? A 23 year-old?
What an interesting (and unfortunately, sad) case. My heart goes out to that family. I can only imagine what a difficult choice that must have been.
I have commented on Scienceblogs just once before, but Alain's first comment freaked me out so bad that I had to jump in. Specifically this part:
"The problem is that we need a way to quantify the brain activity and correlate it to some useful though in order to really know her life potential; after all, Eric Kandel was able to inject some behavioral intelligence in aplysia and countless many researchers are working with mouses so I fail to see why a brain at least (physically) 10 times as big can be diagnosed as having less potential than a mouse brain (for her handicap, i'd look at the CNS to see how it's behaving)."
I am interpreting your statement as saying that because the limited nervous system of a sea slug can produce a behavior, and that of a mouse can produce behaviors, then Ashley with her far larger human brain certainly must be capable of far more complex behaviors regardless of her handicap.
Sadly, this is highly unlikely to be the case. Think of it this way: if my lungs were scarred and riddled with cancer, would you argue that they still function at a higher level than those of a mouse because they are much larger? Hopefully not.
Simply put, massive developmental lesions and functional deficits such as those experienced by Ashley cannot be made up for by activity elsewhere, not even in the large, complex human brain.
You know, a thought occured to me during the Terri Schiavo situation. Even if there was some way to rebuild a human brain from cloned neurons or whatnot, you'd still have essentially a blanker-than-blank slate, like a computer with no BIOS and an empty hard drive, and you'd certainly never recover the original person. So not only is there no hope for the severely brain-damaged now, there likely never will be.
That's pretty much the context here. Ashley is a functioning person, but only just -- pretty much as low on the scale of consciousness as it's possible to be and still have anything resembling a human mind. She would never be able to understand developmental changes in a body she can barely manipulate to begin with.
"I suppose that it is best left up to the parents, doctors, and ethics committees to decide, as it stands."
I agree about the parents and doctors, but I have real questions about the ethics committee.
Just look at the "ethics" committee that Bush assembled for his stem cell decision and ask yourself whether you would want that group deciding your fate.
Several of them seemed to be far more concerned about making sure that their own religious and moral code was carried out than they were about possible benefits of stem cell research.
The ethics committees I believe Shelley refers to are those within hospitals. They are chiefly composed of physicians, in addition to lay people, the odd lawyer and perhaps a dedicated medical ethicist. I think these sorts of groups do a good job, all things considered.
Just because Bush calls his appointees an 'ethics committee' doesn't make it so.
Yes, as David mentioned I was referring to the intra-hospital ethics committees that had oversight over Ashley's case and others. They are usually a pretty diverse bunch, as mentioned. I wouldn't trust a Bush-appointed ethics committee with the fate of my bird, let alone my child!
Even if there was some way to rebuild a human brain from cloned neurons or whatnot, you'd still have essentially a blanker-than-blank slate, like a computer with no BIOS and an empty hard drive, and you'd certainly never recover the original person. So not only is there no hope for the severely brain-damaged now, there likely never will be.
This is a good point that I've been loathe to bring up as it seems to give these poor parents no cause for hope (not that there is much, but how else do you keep going on day after day?). I think you are most likely right--even if some therapy existed that regenerated the missing parts of Ashley's brain, you'd be left with a person that would be most decidedly un-Ashley. As to her current state being termed a functional person, I'd have to disagree. Yes, her heart beats and she breathes without assistance, she kicks and flails, but thats it. Is that functional?
Shelley said:
I know the detailed mechanisms are very different, but it's true for all of us that when we grow up we're most decidedly not who we were when we had the mental capacity of a baby of a few months. I think it would be better for Ashley to be (mentally, not morally or legally!) fully (rather than marginally) somebody, regardless of whether the fully functioning person she ended up was fairly or very unlike who she would've been without the static encephalopathy.
(Is it English or just me that's not so good at expressing these kind of subjunctive thoughts?)
my cats respond to stimuli. one of them even watches tv on occasion. they recognize our faces/voices. they hide when strangers come over. they are more mobile than i am (i can't jump up to the bathroom countertop nearly as easily as they can). they even have a limited ability to communicate (they come and annoy us when they are hungry, jump on our laps when they want to be petted, etc.). and yet no one questions my ability to decide what is best for my cats, including forced sterilization before puberty and limiting their size (okay, feeding low calorie cat food to the fat ones).
no, ashley is not a cat and should not be considered a cat. however, she is someone who will be in the care of someone else for the rest of her life. those who are entrusted with her care are responsible for weighing all options and deciding what is best. while we can't be in her parents' heads, we have to trust that that is exactly what they did. while it may be a useful exercise to discuss the case and extrapolate, we need to remember that it's not our job to make decisions for ashley. her parents have already done their job.
The role of an ethics committee should never be to decide the fate of a child, but instead to explain the situation and options to the parent so that they might decide what is best for their child.
Ethicists are not gods and should never act like them.
I can't judge this particular case as of course I've only the most limited of information. But in general, where the major aim of an interventionist medical procedure is for the benefit of a patient who cannot, has not in the past, and will not in the forseeable future be able to make a rational decision for themselves, then taking that procedure is "a good thing". This therefore differs from scenario from Rich's theoretical modified embryo, in which the benefit cannot be shown to be clearly in the embryo's favour.
If that procedure is to maintain a smaller size for a permanently and heavily handicapped patient - the fact that a fully handicapped adult is harder to care for than a fully handicapped child is clearly a problem for the handicapped individual as much as it is for the carers.
Absence of action can be as harmful, or more harmful, than action. Where someone is clearly unable of making a rational decision on their own part, and will continue to do so, someone else is forced to make it. Doing nothing and blaming the consequences on some non-proven mythological figure seems to me rather a moral cop-out. In cases where the carers and doctors all agree on the best course, then I don't see it to be much of anyone else's business to interfere.
If some enormous leap forward occurs in neuroscience and despite everything the doctors know today it turns out that it is indeed possible to somehow restart the development of the brain and improve the patients mental faculties (say, to the point of a three year old rather than three months old), then I would hope a decision was made in the best interests of the child. If a medical miracle is developed and it is possible to reform the brain enough to allow her to develop to an adult - well, the chances of us developing the ability to do that without being able to reverse the surgery seem vanishingly small to me.