It's really not that surprising a thing to hear from at least some doctors. At any given time, there's always a segment of the medical population who believes in practices like these and their numbers fluctuate within the profession over time. This is a period in which they are gaining in both influence and numbers, I think.
posted
The precedent shouldn't, I think, enter into any consideration of whether to condemn the parents or not. Ashley's parents are not responsible for any precedent that might get set; this is their kid and they're trying to do the best they can for her, and they are not responsible for any crazy people that might use them as a way to justify the crazy and wicked things they might do in the future with their disabled children.
My family has an Ashley (my aunt Claire), who is about the same size as Ashley is now, and we could not care for her at home if she were bigger. The fact that she remained small and did not hit puberty is the reason my grandparents have continued to be able to care for her in the home from her birth to her present age (mid-forties). In cases like these, the family's convenience IS the child's best interest. When my grandparents die Claire will come to my parents, and they are going to have to put her in a home because they cannot care for her as she deserves to be cared for (my grandparents can't either at this point but won't admit it). If there was a surgery that would make the difference between putting her in a facility and keeping her at home, we'd do it in a heartbeat. Her parents want to care for her themselves; they don't want to entrust her to a facility or to an assistant (who, and I'm sorry to make this generalization but it's true, tend to be underpaid and not particularly devoted or reliable).
And I must be misunderstanding arguments about violating her autonomy. What is meant by autonomy here?
Posts: 910 | Registered: May 2000
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quote:I might - might - be able to be persuaded that the wrongs caused by not stunting growth and removing body parts make the wrongs caused by doing so the morally better choice.
I stand by this assessment, and make no judgment with respect to whether these parents were motivated absolutely and 100% by their concern for their daughter.
However, I have solidified my original impression that such procedures should be prohibited absent either 1) informed consent of the patient (not possible here nor likely in any situation involving a minor, but included for completeness) or 2) a condition that would make this a reasonable course of treatment that a fully competent person might consent to.*
Even if there are situations where this treatment would be ethically/morally correct without patient consent, I flat out don't trust the legal and medical decision-making processes - indeed, any human process - to distinguish well enough between moral situations and immoral situations.
There are too many possible bad motives here. If the parents' claims about the ease of care are true, then it creates a profit motive for someone to push such surgery (read the Post series on group homes in DC if you doubt there are people who would do so). Well-intentioned caregivers still have too much personal interest at stake.
It's not a slippery slope argument for me so much as a type I/type II error argument. Assume that there are moral and immoral applications of such therapy. Further assume that a decision-making result that denies permission to a moral application is a type I error, and a decision-making result that grants permission to an immoral application is a type II error. The harm inherent in one type II error is of such magnitude that type I errors cannot outweigh it.
*2 is ill-defined as of yet. My main inclination is that the medical decision should be the same one made as if the person weren't disabled, but of course that's not a usable criteria here since aspects of the disability might be what is being treated (not in this case, of course). So I'm going to choose the lawyer-word reasonable for now with the intent that it be interpreted as close to the aspirational test mentioned above as possible.
Posts: 26071 | Registered: Oct 2003
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quote:Originally posted by romanylass: There's just no way my mind can accept the idea that killing the sickest infants is ethical.
Mine, either. I understand that in some cases, the parents will have to make the very difficult decision to either refuse treatment for a child who WILL NOT live more than a few years on life support, not more than a few days without it, or to try life support but eventually take the baby off, but that is not the same thing as a) the doctors making the decision alone or b) killing the baby outright.
I was shocked when I learned that "refusing treatment" meant they wouldn't even suction out the baby's lungs, though. I don't know that I could, as a parent, watch a baby, even one whom I knew had no chance to live, suffocate slowly from stuff in his lungs. Isn't there a middle ground?
(I say that as mother of a child who required aggressive suctioning and oxygen when she was born before she was able to breathe normally. They were working hard to stop my hemmorhaging, but I remember being more concerned by the gunk in the baby's lungs and the neonatologist working over her increasingly frantically, even when they brought the crash cart in "just in case" because my bp was dropping so fast.)
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sndrake's bugbear, the "bioethics establishment," would seem to agree with him about this case. At least, so says the director of Penn's Center for Bioethics (also editor of the field's pre-eminent journal).
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Please notice that Caplan's comments are so close to those of disability rights advocates they border on plagiarism, since he presents them as his own ideas (instead of saying that disability advocates have been fighting for a long time for better community services). This isn't ignorance on Caplan's part. It's just his way of jockeying for power in this case - successfully, except for Time Magazine.
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posted
That's a pretty inclusive definition of plagiarism. Must one always cite everyone one agrees with?
Maybe he just doesn't want to associate his opinion with groups he doesn't usually agree with, and probably considers to be on the fringe.
quote:Destineer, part of the "bioethics establishment" approved these treatments.
Yeah, and part of the establishment you're part of has done some pretty unprincipled stuff in the past. Fortunately, most lawyers aren't like that. Likewise, most bioethicists probably wouldn't advocate such a radical course of treatment.
I'm tired of seeing bioethicists-as-a-whole trashed on this board on the basis of a few (or even several dozen) outlying cases. Most bioethicists are thoughtful, humane, well-informed people who are wrestling with issues far more nuanced than most people are willing to acknowledge.
And they're positively saintly compared with the nearest alternative -- the sort of blatantly ideological, scientifically uninformed politicking that goes on in the "President's Council for Bioethics."
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quote: I'm tired of seeing bioethicists-as-a-whole trashed on this board on the basis of a few (or even several dozen) outlying cases. Most bioethicists are thoughtful, humane, well-informed people who are wrestling with issues far more nuanced than most people are willing to acknowledge.
And they're positively saintly compared with the nearest alternative -- the sort of blatantly ideological, scientifically uninformed politicking that goes on in the "President's Council for Bioethics."
Des, as far as I know I'm the main perpetrator of bioethics bashing and please don't get to outraged on their behalf - they've done plenty of bashing back.
Mostly, though, they seek to keep bioethics a domain in which public policy is hammered out by an elite group of professionals. It's a value shared by both Peter Singer and GW's Council members.
It's kind of like Urban Planners trying to claim that they should be the only ones having a voice in policy.
I don't play favorites in bioethics - I think as a field they work against the public having a voice, including my part of the public.
quote:Yeah, and part of the establishment you're part of has done some pretty unprincipled stuff in the past. Fortunately, most lawyers aren't like that.
Yeah, which means if someone said "the legal profession is against the misalignment of incentives involved in class actions and derivative suits" I'd correct you by saying "part of the legal profession profits greatly from that misalignment."
You were the one that made the sweeping statement, not me.
quote: Likewise, most bioethicists probably wouldn't advocate such a radical course of treatment.
I'd love to see some proof of this.
Posts: 26071 | Registered: Oct 2003
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posted
FWIW, there was a call out today to email and/or fax a number of parties associated with the "Ashley Treatment" - the doctors will be obvious as recipients, but the two others include their public relations person and Melinda Gates, who is in charge of fundraising for the hospital.
Anyway, here's the letter I faxed and emailed to all parties:
quote: January 9, 2007
To: Dr. Douglas Diekema
CC : Dr. Daniel F. Gunther Melinda Gates Susan Macek
From: Stephen Drake Research Analyst
I am writing to you wearing several hats.
My first hat is as a person with a disability related to injuries received at
birth. The doctor who inflicted those injuries told my parents I probably wouldn’t live very long and that it would be better for all concerned if I died. Obviously, my parents didn’t take the road being offered and I’m here 51 years later.
My second hat is that of a person who spent over ten years working in schools, group homes and day treatment centers supporting people with just about every conceivable combination of physical and cognitive disabilities you could imagine. Some of them had lousy lives and some had very good ones. The quality of their lives was unrelated to the severity of their disabilities. It always came down to the level of support, love and acceptance they experienced from those around them.
My third hat is as a disability activist who has been dealing with the increasingly hostile policies emerging in medicine and bioethics over the past decade. Mostly I deal with issues such as infanticide, euthanasia and assisted suicide.
But your actions and the sanctions given by your so-called ethics committee represent one of the most openly egregious attacks on the bodily rights of people with disabilities I have seen in my work as an activist. Where were your social workers? Are there no families with severely disabled adults finding the support they need? Did you bother to find out?
Rather, I suspect this was an all-too-appealing chance to do a “cutting-edge” procedure involving “cutting up” a little girl. It brings us back to the times of the infamous Willowbrook Institution, where children were injected with hepatitis in the efforts to develop a vaccine, with the coerced consent of parents.
As an activist, advocate and person with a disability, I promise to do all in my power to have your assaults on disabled children halted and to call for investigations into what passes for “ethics” in your ethics committees.
Very Sincerely,
Stephen Drake Research Analyst Not Dead Yet 7521 Madison St. Forest Park, IL 60130 708-209-1500 http://www.notdeadyet.org
posted
sndrake, I'm cautious about asking this, but it's something I really do need to know:
What level of involvement are you comfortable with me (a physician and someone academically trained in bioethics -- of note, though, often in general and vocal disagreement with many highly-publicized bioethics commentaries) taking in these threads? I'm honestly not asking from a position of defensiveness or frustration, just really wanting the information that only you can give me about this.
I find these matters to be important and worth discussing, but I'm never quite sure if my input is ... helpful? egregious? irrelevant? relevant but somewhat insulting? I can work with any of these, by the way, but I'm feeling kind of adrift at figuring out what sort of involvement is and is not appropriate for me in this area at this site.
(Given that I'm batting about 150 lately on the Courteousness scale, it seemed better to ask outright. But my apologies in advance if this is too delicate a topic to ask about so baldly, or if I should have asked in a separate thread, or perhaps in private email. This just seemed a good place to do it clearly.)
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posted
I'd guess this is a no brainer, but I'm curious:
People supportive of this surgery, are you in favor of doing an amniosintesis to check the baby's karyotype for abnormalities such as Down's Syndrome, and possibly terminating the pregnancy of a disabled child?
Same question to people against the surgery, are you against such practices?
I know talking about abortion in general is a much more inflammatory subject, but I'm wondering if anyone supports one but not the other.
My view on the ethics of the situation is as such: Not doing the surgery almost certainly means putting the kid in a home or secondary care serivce of some sort. Would the quality of life of the child be increased or decreased by being put there? If the answer is decrease, then clearly it's for the good of the child to stay at home. Do the benefits of staying at home outweigh the negatives of the surgery?
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quote:People supportive of this surgery, are you in favor of doing an amniosintesis to check the baby's karyotype for abnormalities such as Down's Syndrome, and possibly terminating the pregnancy of a disabled child?
Same question to people against the surgery, are you against such practices?
I'm not against the testing per se, but I am against the termination of the pregnancy.
Posts: 26071 | Registered: Oct 2003
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quote:People supportive of this surgery, are you in favor of doing an amniosintesis to check the baby's karyotype for abnormalities such as Down's Syndrome, and possibly terminating the pregnancy of a disabled child?
Same question to people against the surgery, are you against such practices?
I'm pretty much against this, mainly because of the unproven surgeries that were done and her inability to consent.
So that's where I stand on this; on to amnio and abortion.
I'm in favor of amniocentesis when indicated (although 4-D ultrasound now provides a viable and non-invasive "first step" evaluation for mothers with an abnormal AFP screen, and I think it should be offered first in that situation whenever possible.) I think in all cases it is best for parents to be as knowledgeable as possible about what is going on with their baby. I personally would not make the choice to abort a baby with an abnormal genotype or abnormal development in utero. In general, I am against abortion. However, I also would not take that choice away from other parents, even though it is not a choice I would make, because their beliefs about what is right and what they can handle in their own lives may be different from mine, and I think it would cause more pain and damage to disallow them abortions than to continue to allow that to be the parents' choice.
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quote:Not doing the surgery almost certainly means putting the kid in a home or secondary care serivce of some sort. Would the quality of life of the child be increased or decreased by being put there? If the answer is decrease, then clearly it's for the good of the child to stay at home. Do the benefits of staying at home outweigh the negatives of the surgery?
Hit reply too soon. I don't thing the first sentence is correct. Even if it is correct based on the parents' available resources, it's not correct based on an achievable plan for providing adequate care to those with such disabilities.
The idea that a surgery such as this can become ethical simply because we fail to provide adequate care strikes me as very wrong.
And this is without investigating whether the parents really could care for her if she were to continue growing. I'm not going to delve into it deeply, because I tend to think they have good motives in general, but if they could continue to provide care for her by making particular sacrifices, we'd have to weigh the harm of those sacrifices against the harm of the surgeries. To perform this calculation fully would require in-depth analysis of each family's financial status in deciding whether this treatment is ethical. And I'm quite frankly not willing to allow financial status to enter into the equation of whether this girl can ethically have pieces of her cut out without her consent.
Imagine a situation where the ethic board decides that the family can afford to care for the adult-sized patient unless the parents have one more child. I think it's an untenable paradigm.
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quote:I'm not against the testing per se, but I am against the termination of the pregnancy.
That's my feeling as well. In all my pregnancies, I refused amniocentesis (not that it was ever indicated, but my doctor asked me up front if I would be interested in having it done) The reason I refused is because there was a slight risk of miscarriage from the procedure itself, and since there was no possibility of me terminating the pregnancy anyway, I saw no reason to take the risk.
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quote: I'd guess this is a no brainer, but I'm curious:
People supportive of this surgery, are you in favor of doing an amniosintesis to check the baby's karyotype for abnormalities such as Down's Syndrome, and possibly terminating the pregnancy of a disabled child?
Same question to people against the surgery, are you against such practices?
I know talking about abortion in general is a much more inflammatory subject, but I'm wondering if anyone supports one but not the other.
I've been watching blogs and news accounts and I don't see any real trend here. Art Caplan, who has been mentioned on this thread, has no problem with prenatal screening (with the possible exception of the looming possibility of an autism prescreening test), but is against what happened here.
The Christian Medical Dental Association, a group of pro-life doctors, had a spokesperson come out and state their approval of this.
Then you've got folks like James Hughes, who has a passion for transhumanism (anyone watching him on Paula Zahn or another show might have thought he had some expertise or interest in disabilities). I know from postings of his on an email list he really would be just as approving of the family killing Ashley as having her subjected to this regime of surgery.
So while I'm not sure what you're looking for, I sure don't see anything.
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I don't think I've expressed discomfort about your participating in any threads related to NDY stuff, bioethics, etc.
I know discussions are hard, because you come at it from a completely different perspective than I do. I see the field as increasing politicized and one that seeks to dominate policy. It's not that I think all ethics committees are doing horrible things, but there are few meaningful checks on them and no recourse for those who have been railroaded by them.
I can't write too much more. I've already broken one of my main rules about writing about work stuff at night and risking insomnia. I won't be real conversant until at least Friday - there'll be more stuff happening that is going to keep my very busy for at least the next two days.
FWIW, by feelings about medicine, bioethics, ethics committees, etc. arent all that unusual among disability advocates. My happy role in the mult-pronged advocacy approach is to be the one who uses the strongest language and takes some risks that larger organizations find more difficult.
Now... It's Tuesday and that means a certain show has started up again.
Time to go watch my favorite manipulative, drug-abusing sociopath. Posts: 4344 | Registered: Mar 2003
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posted
I'd just like to step up once again and say that not all care homes and communities are bad. Some are wonderful, kind, caring places where the community members are given chances to grow into adults in their own right, not simply as their parents' children.
There are some not-so-great places, I know first hand. The place I'm at now faces a constant struggle against burocracy which affects the residents. Some days I get depressed there, until I remember that every single resident has long surpassed their life expectancy because they get the care and medical attention they need.
Things aren't perfect. But they're a darn sight better than they used to be, and they're getting better. So can we please stop talking about "putting people in homes" as if it's tantamount to a life sentence complete with torture?
Posts: 2849 | Registered: Feb 2002
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quote:Not doing the surgery almost certainly means putting the kid in a home or secondary care serivce of some sort. Would the quality of life of the child be increased or decreased by being put there? If the answer is decrease, then clearly it's for the good of the child to stay at home. Do the benefits of staying at home outweigh the negatives of the surgery?
Hit reply too soon. I don't thing the first sentence is correct. Even if it is correct based on the parents' available resources, it's not correct based on an achievable plan for providing adequate care to those with such disabilities.
The idea that a surgery such as this can become ethical simply because we fail to provide adequate care strikes me as very wrong.
And this is without investigating whether the parents really could care for her if she were to continue growing. I'm not going to delve into it deeply, because I tend to think they have good motives in general, but if they could continue to provide care for her by making particular sacrifices, we'd have to weigh the harm of those sacrifices against the harm of the surgeries. To perform this calculation fully would require in-depth analysis of each family's financial status in deciding whether this treatment is ethical. And I'm quite frankly not willing to allow financial status to enter into the equation of whether this girl can ethically have pieces of her cut out without her consent.
Imagine a situation where the ethic board decides that the family can afford to care for the adult-sized patient unless the parents have one more child. I think it's an untenable paradigm.
I guess I misunderstood the original article then, but didn't the parents cite inability to care for the child in the future as one of their main reasons for the surgery? I was under the impression the reason they were doing this was a combination of making the child more comfortable, and making it easier to care for her so they wouldn't have to send her to a home.
I also thought it was more or less established that she has limited brain function and consent wasn't just impossible to obtain, but she wouldn't even know how to give consent, or what it would entail. How is it any different a family member making medical decisions on behalf of someone else in certain situations?
Correct me if I have any of the facts wrong up there. I'm going by memory.
Posts: 21898 | Registered: Nov 2004
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quote:I guess I misunderstood the original article then, but didn't the parents cite inability to care for the child in the future as one of their main reasons for the surgery? I was under the impression the reason they were doing this was a combination of making the child more comfortable, and making it easier to care for her so they wouldn't have to send her to a home.
The parents cited this inability. It doesn't mean that inability actually existed. And any inability that did exist was due to inadequate support from society at large.
quote:I also thought it was more or less established that she has limited brain function and consent wasn't just impossible to obtain, but she wouldn't even know how to give consent, or what it would entail. How is it any different a family member making medical decisions on behalf of someone else in certain situations?
Because there are some types of "treatment" that no one should be able to consent to for another. I number removing organs* and artificially stunting growth to be among those types of treatments.
posted
What do you think society at large owes them?
What constitutes "removing organs" with respect to decisions a family member can make? Are you talking about family members allowing doctors to harvest the organs of comatose patients?
Posts: 21898 | Registered: Nov 2004
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quote:What do you think society at large owes them?
Society owes support to those who cannot support themselves. We provide that support in a variety of ways: by requiring parents to care for their children, by helping children without parents find parents, by providing care directly, by making it easier or more appealing for people to donate time or money, by removing barriers to good care. In the case of children who require extraordinary care, I believe society cannot demand that the parents shoulder the entire burden.
Sadly, we do this badly or not at all in many cases.
quote:What constitutes "removing organs" with respect to decisions a family member can make?
Appendicitis leads to an organ removal decision the proper person can make on behalf of a mentally incompetent person.
quote:Are you talking about family members allowing doctors to harvest the organs of comatose patients?
Organ donation (legally) happens from brain-dead (total cessation of brain function, including the brain stem - not a Terri Schiavo situation) or cardiac-dead patients (when brain death cannot be determined - total cessation of breathing and heartbeat when life support withdrawn), not merely comatose. I have no problem with a proper designee approving organ donation in such circumstances.
Organ donation from a living donor is one of the situations I would limit to personal consent only, not designated consent.
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quote:Originally posted by sndrake: I don't think I've expressed discomfort about your participating in any threads related to NDY stuff, bioethics, etc.
*nods
You haven't said anything about this. I do have my own level of discomfort, and I'm not sure how best to manage it. I think it would help if we can talk about this specifically later when you have the time -- I'd really appreciate it.
Hope you're enjoying the homely sociopath. *grin
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posted
BTW, I left out a phrase in a sentence above. I'll correct here:
quote:there are some types of "treatment" that no one should be able to consent to for another. I number removing organs [in situations where the organ removal would not be a treatment recommended for a non-disabled person] and artificially stunting growth to be among those types of treatments.
posted
sndrake, when you are back online and discussing this stuff again here, it would be great if you could be specific for me about what level of involvement you are comfortable with me taking in these threads. You haven't expressed discomfort, but I can't tell if it's there (unexpressed), and knowing for sure is important to me.
Thanks in advance. It'll wait until you have time and inclination. Posts: 14017 | Registered: May 2000
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quote:People supportive of this surgery, are you in favor of doing an amniosintesis to check the baby's karyotype for abnormalities such as Down's Syndrome, and possibly terminating the pregnancy of a disabled child?
Same question to people against the surgery, are you against such practices?
I'm not against the testing per se, but I am against the termination of the pregnancy.
Been abstaining from this thread due to ambivalence. I am reminded of a good post, in an exchange between, well Dag and Irami, and would like to clarify one issue.
I am morally for amniosintesis . I am morally ambivalent about terminating the prgnancy, but leaning against. I am morally ambivalent about the surgery, but leaning towards.
However, I do not believe that my morals should translate into laws, which is what seems to be required to stop these parents, which seem to have a well laid out and well intentioned plan...even if you disagree with their actual decisions. They seem to be pretty sure about this decision.
In the end, I believe that in an ideal world, many of the posters here are correct. She should grow up free of surgery, be well cared of by her parents, and be well supported by professionals.
However, the reality is that the medical system is not ideal. We can stand here and armchair quarterback, but those parents (and that child) will have to deal with the consequences. We can say that help will show up, but will not bear the consequences if it does not.
In fact, while I support the cause (getting more support for the disabled at home) I also recognise that it is highly improbable to succeed. Along the same lines, I support Kyoto but recognise that for the moment it is more financially prudent to buy a normal car (and assume that the government will not significantly raise taxes to reduce consumption) than a hybrid and hope that it will pay off in the future.
Along the same lines, I would hope that the parents would be given support if they did not make this decision but think that realistically they would not be given enough. Under these circumstances, I cannot jump to attacking them or supporting them, but cannot agree with anyone stridently attacking them.
I myself find it hard to decide what I would do, even as the child. Given a situation where I could not read, play music, be social, where much of the joy in life would be spending my time with my parents, I would find the choice between an institution and the care of my parents to be hard to make. Even if the institution was the best, in the end the workers there are motivated out of altruism and a paycheque, my parents would be motivated for me, specifically. I do not think that the choice is clear.
For the group that sndrake represents, (which I assume are disabled people and possibly their caregivers) I cannot help but think that they are too emotionally tied to the situation. They are sure that with their level of disability, they fear the loss that they would experience if they had that surgery. I would note that if any of them were truly in that girl's position, they would not be able to make a protest in that manner ... in a funny way, they have fallen into a trap that many doctors have to avoid, being too sympathetic with the patient.
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quote:However, I do not believe that my morals should translate into laws, which is what seems to be required to stop these parents, which seem to have a well laid out and well intentioned plan...even if you disagree with their actual decisions. They seem to be pretty sure about this decision.
The area where one human being is doing something to another without that person's consent is precisely the area where morality has the strongest claim to be translated into law. In my mind, this is especially true when the actor seems pretty sure about the decision.
I'm not saying every moral tenet involving actions toward another should be translated to law. Far from it. But organ removal? Deliberate stunting of growth? They are comfortably on the side of the line that should be regulated by law.
That doesn't necessarily mean that this procedure should be banned (I think it does, for additional reasons I've discussed in fair detail). But I think most people would agree there's some limit that should be imposed by law. Some examples:
1) Castrating pre-teen severely mentally disabled children. Reduces strength and potential damage such a person could cause and allows easier control, which can reduce risk of injury to the child. 2) Amputation of legs after paralysis for mentally disabled patients. After all, the legs are now useless and only add unnecessary weight.
I think it's pretty clear that we all would impose some limits on medical/surgical alterations of mentally disabled individuals, even if we believe the parents to be well-intentioned.
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posted
Dag: Sorry, I should have specifically noted, my morals *in this case.*
Obviously some laws have to be based on morals, with the obvious example being murder, another good example where an actor is (sometimes) sure about the decision.
I just do not think that my morals are clear enough in this case, and I would hate the legislate them (in the form of a ban) on someone else. More importantly, I do not believe anyone would have the moral authority to tell me what to do in a similar case.
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quote:The area where one human being is doing something to another without that person's consent is precisely the area where morality has the strongest claim to be translated into law.
But another issue arises in cases like this one. Is a creature that's permanently incapable of consenting to anything (not just incapable of communicating consent, but incapable of willing or making decisions) properly called a human being? Is such a creature a person?
One of the weighty issues which arise in bioethics, and which disability activists often (in my experience from reading their literature) refuse to recognize, is that the line between a person and a non-person animal can be blurry in some cases.
Claims like "Ashley is mentally 3 months old" seem a bit distorted to me. One of the features of a normal 3-month-old mind is that it is growing, developing into something more sophisticated and aware. It sounds as if Ashley's mind is not like this at all.
Is she as mentally sophisticated as a cat? I would bet money that her mind is not as sophisticated as a gorilla's. These things are difficult to test, which means Stephen and his colleagues have a good point when they urge us to be cautious. And yet, these comparisons raise quesions. If Ashley is less like you or me, mentally, than a gorilla is, why does her consent matter morally when we usually assume that a gorilla's consent doesn't matter?
I'm not advocating that we follow this train of thought all the way, or even as far as I've taken it here, in decisions about medical ethics. I just want people to understand that there are significant, ill-understood questions about what makes a person. My problem is with people who pretend such questions are easy or obvious.
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posted
Well, she started pre-pubescence at 6 1/2. That would justify to me the hysterectomy and breast-bud removal, since there was adequate reason to suspect her hormones were abnormal. And at that point, the growth attenuation seemed like a reasonable standard for her care, and I think that is where the communication breakdown is taking place. They do not see themselves as making therapy decision, but as continuing a therapy course.
I happen to think they are misguided because as they age, even her current size will not allow the level of care they are talking about. 75 lbs is quite a bit. And in the end, I think it comes down to their convenience and their ability to feel independent from in-home care, so on the whole I'd give further grown attenuation a thumbs-down.
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posted
I think her current size will allow for the level of care they are talking about for a good long while. My aunt Claire is about that weight, and my grandparents have been caring for her for 45 years at home. (The system's breaking down now, but that's because they're getting old and frail and refuse to allow their other children to help them.)
Posts: 910 | Registered: May 2000
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quote:But another issue arises in cases like this one. Is a creature that's permanently incapable of consenting to anything (not just incapable of communicating consent, but incapable of willing or making decisions) properly called a human being? Is such a creature a person?
Yes. Absolutely.
quote:One of the weighty issues which arise in bioethics, and which disability activists often (in my experience from reading their literature) refuse to recognize, is that the line between a person and a non-person animal can be blurry in some cases.
Only if one thinks it is proper to rate the "worthiness" of a particular homo sapiens to be called a person. It is precisely this activity which I find to be morally repugnant.
quote:If Ashley is less like you or me, mentally, than a gorilla is, why does her consent matter morally when we usually assume that a gorilla's consent doesn't matter?
Because a human being is different than an animal.
quote:I just want people to understand that there are significant, ill-understood questions about what makes a person. My problem is with people who pretend such questions are easy or obvious.
There might be ill-understood questions about what makes a person - see tetratomas for one difficult question.
There is not an ill-understood question about what makes Ashley a person, though. My problem is with people who try to decide what about a person makes that person worthy of moral treatment.
(And this is not to say that every person who favors this surgery thinks that Ashley is not worthy of moral treatment. I understand that some people think that the surgery is a moral way to treat a person. This post - except for this parenthetical - is not directed at such people.)
Posts: 26071 | Registered: Oct 2003
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quote:One of the weighty issues which arise in bioethics, and which disability activists often (in my experience from reading their literature) refuse to recognize, is that the line between a person and a non-person animal can be blurry in some cases.
I don't think they "refuse to recognize" it. They disagree with it. Strongly. In fact, that would be the point of much of said activism.
Posts: 9866 | Registered: Apr 2002
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quote:Only if one thinks it is proper to rate the "worthiness" of a particular homo sapiens to be called a person. It is precisely this activity which I find to be morally repugnant.
Even if that Homo sapiens has no higher brain activity? A brain-dead individual is still a live, respirating animal of genus Homo, species sapiens.
One must draw the line somewhere. Do you draw it when the heart stops beating, and only then?
And on your view, could a non-Homo sapiens (eg, a sentient alien) ever be a person? How could we tell, if there are no mental criteria for being a person?
quote:There is not an ill-understood question about what makes Ashley a person, though.
I say there is. There must be some mental criteria for being a person, or else brain-dead humans would still be people. The question then arises, does Ashley meet these criteria? And that is a tough question because, as I've pointed out, by at least some measures Ashley mentally resembles a lower animal more than she does an archetypal human.
quote:I don't think they "refuse to recognize" it. They disagree with it. Strongly.
But I haven't seen a convincing, non-fallacious argument for their view (in particular, they seem to often commit the slippery-slope fallacy).
Posts: 4600 | Registered: Mar 2000
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quote:Even if that Homo sapiens has no higher brain activity? A brain-dead individual is still a live, respirating animal of genus Homo, species sapiens.
A brain-dead person has no brain activity, not just no higher brain activity.
quote:And on your view, could a non-Homo sapiens (eg, a sentient alien) ever be a person? How could we tell, if there are no mental criteria for being a person?
Assuming you mean a sapient alien, then one would look to the species. Is the species sapient as a whole? If so, then non-sapient members of that species are persons.
quote:I say there is. There must be some mental criteria for being a person, or else brain-dead humans would still be people.
Brain dead people are dead people. You either mean something other than brain dead or are simply mistaken in your assertion.
quote:The question then arises, does Ashley meet these criteria? And that is a tough question because, as I've pointed out, by at least some measures Ashley mentally resembles a lower animal more than she does an archetypal human.
And I say your standards are wrong, arising most likely from your error concerning brain death. Personhood is not tied to mental status.
Posts: 26071 | Registered: Oct 2003
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quote:A brain-dead individual is still a live, respirating animal of genus Homo, species sapiens.
A completely brain-dead individual would not be respirating. Not without mechanical assistance, anyway. That's a frequently used pro-euthanasia misstatement, to call someone in a coma "brain-dead" when they are not.
And brain-dead humans are still people. But they're dead people.
Posts: 9866 | Registered: Apr 2002
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quote:My problem is with people who try to decide what about a person makes that person worthy of moral treatment.
Why do you have a problem with such people? There must be some reason why people are worthy of moral treatment, since they are worthy of it. Every fact has some explanation. Why shouldn't we try to figure out the reason?
You don't want to know what makes people worthy of moral treatment? I sure do!
Posts: 4600 | Registered: Mar 2000
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posted
People are worthy of moral treatment not because of an attribute they possess but because of what they are: people.
Posts: 26071 | Registered: Oct 2003
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quote:A completely brain-dead individual would not be respirating. Not without mechanical assistance, anyway. That's a frequently used pro-euthanasia misstatement, to call someone in a coma "brain-dead" when they are not.
What a lot of people on both sides don't realize is that whether you need life-support or not is beside the point. Disconnecting a living person from life support is wrong. Disconnecting something that's not a living person is OK.
quote:And brain-dead humans are still people. But they're dead people.
You can use the words that way, if you like. Since dead people don't deserve the same moral consideration as living people, you're not really disagreeing with me here.
Posts: 4600 | Registered: Mar 2000
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posted
And Ashley's not dead, so I'm not agreeing with you. Ashley has brain activity. A brain dead body does not. Besides, you've yet to correct or clarify your usage of brain dead.
The word is right there - dead.
Posts: 26071 | Registered: Oct 2003
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quote:Brain dead people are dead people. You either mean something other than brain dead or are simply mistaken in your assertion.
Dag, dkw, substitute "living person" for every time I use the word "person" in this thread and let's get on with the non-pointless-semantics part of the debate.
quote:People are worthy of moral treatment not because of an attribute they possess but because of what they are: people.
And there's now way to define what it is to be a LIVING person, in terms of a thing's attributes? Something with all the same attributes as a rock could be a person?
quote:Assuming you mean a sapient alien, then one would look to the species. Is the species sapient as a whole? If so, then non-sapient members of that species are persons.
How many members of a species have to be sapient in order for the species to be sapient? Most of them? Only one?
If I took Ashley out of our world, and put her in a world where all human beings were like her mentally, would she still be a person? Seems like your view would say no, she wouldn't.
What if I took her out of our world, and put her in a world where there were no other humans? Seems like your view would again say that this other-worldly Ashley, who is the exact same creature except that she's not surrounded by a bunch of other sapient humans, was not a person.
That's pretty strange. Seems like whether a thing is a person should have everything to do with that thing itself, and nothing to do with whatever other things happen to exist around it.
Posts: 4600 | Registered: Mar 2000
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posted
Re Singer: Insofar as I've read Singer's work, ie only one of his many books, I don't agree with it. It's impossible to agree with Singer unless one is an act-utilitarian, which I most certainly am not.
Posts: 4600 | Registered: Mar 2000
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