Ethics at the Edges of Life
There is a case in Philadelphia in which a child with disabilities is being denied a kidney transplant. Her parents claim that it is because she is mentally handicapped. It’s hard to know exactly what is going on here, because of the stringent laws protecting patient privacy. We don’t know, for example, whether the child also has associated physical disabilities that make it less likely for the kidney transplant to be successful. We don’t know how well she would respond to the treatment.
But the issue is in fact an issue that has been discussed before, in ways that those engaged in the current discussion might find profitable to consider. The issue first came up in the 1960s with the “Seattle God Committee,” in which a committee decided who would have access to kidney dialysis. The committee considered not only issues pertaining to medical success but also social worth. Whose life would be most worth saving? The lives that the (mostly middle class) committee thought saving were, not surprisingly, most like their own. The committee came under heavy criticism, from both the public and members of the nascent field of medical ethics.
Treatment of the seriously mentally handicapped has also been discussed a great deal, in the seventies too. One of the most famous cases was that of Joseph Saikewicz, a profoundly mentally handicapped man in his 60s who got cancer. He was unable to make decisions for himself. His guardian did not want to give him chemotherapy, although it would be a course of treatment that most non-handicapped people his age would undergo. In a controversial decision, the court decided that it was not in his best interest to receive the treatment-in part because of the way he would experience its discomfort and trauma.
The Roman Catholic tradition does not teach that life has to be prolonged at all costs — we are not a vitalist tradition. The old-school manualists would say, for example, if the only way to save your life is to get exotic treatment far from home for a prolonged period, you don’t necessarily have to do it — especially if you’re a homebody. It is an “extraordinary” means — at least for you, and you don’t need to take it.
Things are more complicated however, when we’re dealing with adult incompetent patients and with children — because neither group can make decisions for themselves. It’s especially complicated when we get to children with disabilities: how do we sort out legitimate medical concerns versus illegitimate devaluing of “less than perfect life”? If for example, the syndrome from which this girl suffers significantly reduces the chance that the kidney transplant will be successful, does that matter? If her life expectancy is much shorter than another child’s (whether or not she is mentally disabled) does that matter?
There are a number of good resources on this topic, for those who are interested.
On the general issue of ordinary and extraordinary means and incompetent patients, see the debate between Kevin Wildes and Gilbert Meilaender in Theological Studies. (Google their names at this website).
For one of the best efforts to grapple with treatment for children with disabilities, see Paul Ramsey’s Ethics at the Edges of Life — which attempts to work out a “medical indications” policy that avoids what he believes to be nefarious quality-of-life judgments.
Finally, of course, we have a different type of “conscience” problem. A transplant requires the cooperation of an entire medical team. It appears that the doctors believe, in conscience, it is morally wrong to do this procedure. Are we going to make them do it?
Thank you. I can’t access this this article typing in their names. Is there another author or title I could use?
I got to them…bad spelling!
Thanks for the reference.
I have an interesting book by one of the young moral theologians, called “Too Expensive to Treat, Finitude, Tragedy, and the Neonatal ICU,” which touches some of those principles.
Something that happened to me a long time ago made me rethink “extraordinary means.” An old man had a stroke and they put him on oxygen. He survived and went home where his wife took care of him. For twenty out of the twenty-four hours of each day, he howled, long wailing bellows–of pain? — Anger that he was still alive? I don’t know. I used to bring the wife Communion. She had some space-age medical equipment, including a derrick she would use to lift him out of bed so she could change the perpetually sodden sheets.
After almost a year and a half, he finally died. His wife, under all that stress, had lost all the skin off both hands.
So…was even oxygen too much, creating something that was a horror? As I fill out my own living will, I think of that man. If I get my stroke, should I tell them to hold the oxygen?
If the goal of this life is to prepare ourselves for the next life, why this almost morbid attachment to the present life no matter how difficult it is for us or those who are tasked with taking care of us? Did the man in Fr. Taylor’s example above somehow gain anything by existing (I wouldn’t use the word “live”) in the condition as described? Did he gain anything for his loving, long-suffering wife? Was this really what God desires of and for us? Really?
If you are 80+ . YES
If you are 70+ , maybe
I m a happy 87 but I don’t want to consume resources that could more properly be spent on the needy.
moraltheology.com is a wonderful resource for this kind of question. Here we meet many of the young moral theologians who are the future. This very issue is being discussed there now by Jana Bennet. David Cloutier also gives a nod to the thread of another discussion.
I believe the family will be supplying the kidney in this case, so you are not necessarily dealing with an issue of allocation of finite resources or in her taking a scarce organ that should have gone to someone “more deserving” since it is unlikely the relative would otherwise have donated. As for the “conscience” question, did the doctor really state that it was morally wrong to do this surgery with the available kidney provide by the family? I did not see that in any of the coverage. I believe there was some issue with the doctor not being a native english speaker causing some of the difficulties in how the reason for the denial was communicated, but I didn’t see where he said he was morally opposed to doing the surgery. I’m sure that they will be able to find a willing surgeon now that their case has gotten such a high profile in the news.
It just so happens that I recently discussed the possibility of a kidney transplant for me sometime in the future. I said that I thought it wouldn’t be fair, given the younger people who need them (unless there were one going begging). The doctor agreed (and anyway I”m too old).
Medical ethics needs to give more attention to the possible-life-span factor in these cases.
As to the woman with the unfortunate husband, it seems to me that if there had been more women in moral theology all along some of the Church teachings wouldn’t have been so long in coming. Historically women have known more about health, health care and what is “extraordinary” health care than moral theologians.
I’m sure that they will be able to find a willing surgeon now that their case has gotten such a high profile in the news.
MikeD,
There is an issue that is not getting discussed, and that is who the donor will be. It sounds like the family assumes they can come up with a suitable donor from within their family, but I do not think that is necessarily a correct assumption. From what I have read, and adult donor may not be appropriate, because an adult kidney may be too large. And there are very serious issues involving “volunteering” a minor child as an organ donor. I don’t know whether it is a standard approach, but I did read one paper saying that if a child is going to be considered as a donor, it must be a first-degree relative of the person needing the organ, and the person needing the organ must be in immanent danger of death.
Robert George over on Mirror of Justice called attention to an article titled Serious issues in disabled girl transplant case. The article concludes:
It seems possible to me that the family may not be able to come up with a donor, and that even if they do, the child may not be a good candidate for a transplant. It is going to be rather difficult for medical authorities to make an objective judgment now that there has been all this publicity.
Ramsey argued that it was a violation of a parental duty to one child to take an organ from him or her for another child. It is a hard deontological position, but it is not without backing. I could see a doctor not wanting to do a transplant from a minor child- David’s right.
I’m 71. I’m convinced that people over the age of (X – I suggest 70, but am willing to negotiate) should not have any excessive (to be defined by ??) medical services that will take critical funding away from healthcare for younger people. No transplants, life support systems, etc. Nada. I was given a pacemaker at 70. Most likely that shouldn’t happen going forward if the cutoff age prohibited it.
At my age and older, most of us are no longer contributersbut users. We need to preserve scarce healthcare and other social support funding for the young people who will be contributers to the ongoing health and success of the overall society.
I’ll stop short of prescribing a quick shot of hemlock for those over X, but would not totally rule out the idea, depending on their level of health and suffering that cannot and should not be alleviated.
Mary, Ann, Jimmy… my mother also vigorously said that she did not want expensive care when she was 80 and struck with leukemia, because, as she said, resources would be better spent on young patients. How many older people feel that way, I wonder? Is it a mark of selflessness, or of indifference to the world and to life, or of compassion for children or youth who are sick? Is it a common perspective, normal behavior for social beings?
But the idea of rationing expensive treatments for old people, not because they’re less likely to recover but just because they’re old, feels wrong to me. You might agree to volunteer to go for cheaper, less efficient care, but surely you would not want to “be volunteered” by others, would you?
” but surely you would not want to “be volunteered” by others, would you?’ Claire is right on that but..
At nearing 80, my living will says palliative care and no procedures that are not done in the third world.. think Bangladesh…..this kind of stance could be promulgated in parishes and we got the right demographic in the pews… ..?
Sorry, I gave the wrong address for the excellent site by young Catholic moral theologians whose thoughts are worth considering because they are the future. Many of them are lay people, and many are women. The clerical domination of this discipline has disappeared. Anyway, thought people like Jana Bennett and David Cloutier. Cloutier gives one of the threads in Commonweal high marks. The proper address: Catholicmoraltheology.com
I think any committee who dare to make such judgements are to be pitied. It is, indeed, playing God. They have blood on their hands no matter what they decide. The work has to be done, I suppose, but it might just as well be done by tossing dice. No life has a greater value than any other.
I don’t think there was enough information to do more than raise the ethical issues involved, certainly not enough to resolve them.
1. How could the family obtain a suitable donor from their social network for a small child? From another one of their own children or one donated by a cousin? Would that ever really be ethical, whether the recipient is mentally challenged or not? (This is different from a bone marrow donor, because marrow regenerates.)
2. No medical issues are definitively settled — the extent to which existing physical issues make the transplant especially dangerous, or unlikely to succeed.
3. Given the risks and the level of understanding the child is capable of, is it really fair to subject her to the pain and risk (which is going to include reduced social contact to avoid the possibility of infection) of transplant surgery? If the surgery were highly likely to be successful, you would argue that it is — but what if those risks are much higher than average and her life likely to be shortened in any event?
4. Families in this situation are under enormous emotional stress, and there is a possibility that they believe it is important for them to prove that they love their disabled daughter equally, and so, may have misunderstood what they were told, or perhaps, are in denial about some of these issues. I say this because everyone who commented including from CHOP itself agree that “mental disability” on its own is an insufficient basis to deny a transplant. So what exactly is happening here?
If I were a surgeon, I would not extract a kidney from a living child donor, certainly not one under the age of 12. I would refuse on the basis of the conflict of interest among all known adults and the inability to get truly informed consent from the child.
The work has to be done, I suppose, but it might just as well be done by tossing dice. No life has a greater value than any other.
Accepting the principle that all human lives are of equal moral worth does not mean practical decisions cannot be made about such things as who is the best candidate for an organ transplant. A medical team does not make such decisions based on moral worth. Also, taking the old example of the fire in the fertility clinic, the canister of frozen embryos, and the nurse crying out to be saved from the flames, I don’t think anyone would seriously say that since the canister contains multiple lives, the firefighters should rescue it and let the nurse die.
Adult kidneys can be transplanted into children, so the implications that the parents are going to coerce another child to volunteer the kidney may not be applicable. Here is on program that has had success in the adult to child procedures and there are many others like it: http://www.lpch.org/clinicalSpecialtiesServices/COE/Transplant/KidneyTransplant/adultKidneys.html
In fact, Children’s Hospital in Boston has “successfully transplanted an adult kidney into a one-year-old baby weighing about 14 pounds.” http://www.childrenshospital.org/az/Site1209/mainpageS1209P0.html
Barbara, don’t we ask parents to consent on behalf of their children for far more dangerous procedures? Do you object to that as well? You might say that all those cases are about the child herself. Leaving aside the very individualistic understanding of ‘best interests’ that implies, what about enrolling children (with terminal diseases) in experimental clinical trials in an attempt to help future generations with the disease? Is that out too?
All those are interesting and difficult questions, but not really central to the controversy of this case. What we have here, at least if the mother’s story is accurate, is an actual medical form with a box to check for ‘mental retardation.’ That box was checked in Amelia’s case, and that (at least in part) is why she was deemed to be something other than a suitable candidate for this transplant.
Perhaps there were other factors involved, you’re right, we just don’t know. However, according to the story of the mother, the fact that the box for ‘metal retardation’ was checked was what played the major role in the decision.
MikeD,
Sticking just with this case, we do not know if the family really has a donor, and if so, whether the donor is an adult or a child. From the information we have, they are assuming, because they have a large family, that somewhere in that family is a suitable donor. I think Barbara is exactly correct when she says, “I don’t think there was enough information to do more than raise the ethical issues involved, certainly not enough to resolve them.”
Surely no ethics board would permit the removal of a healthy organ from a healthy child to transplant into another child, regardless of the intended recipient’s I.Q.
Barbara, don’t we ask parents to consent on behalf of their children for far more dangerous procedures? Do you object to that as well?
Charles,
I presume you know that this is not a concern Barbara invented. Here are the ethical criteria for children serving as organ donors from the American Academy of Pediatrics:
Children may serve as solid-organ donors if:
• Donor and recipient are both highly likely to benefit;
• Surgical risk for the donor is extremely low;
• All other deceased and living donor options have been exhausted;
• The minor freely assents to donate without coercion (established by an independent advocacy team); and
• Emotional and psychological risks to the donor are minimized
From another source I read, an organ donation from a child is considered ethical only if the child donor is a first-degree relative of the intended recipient. I think this is very much in line with the first bulleted point above. For an adult “volunteering” the kidney of the child, there must be some real benefit to the child, such as saving a brother or sister.
Charles, I can see that where a child is donating an organ to a sibling one might argue the donation is in their best interest, but this is a highly fraught determination. For one thing, in the case of kidneys, one would have to consider whether the donor is also at risk for the health related conditions that give rise to the need for the transplant. I do not think that the parents should be the last word.
I have real reservations about all living donations, just because I think that medical doctors (and especially transplant surgeons) tend to underrate the possibility and consequences of surgical complications. In addition, the potential for coercion of family members and friends is substantial. In many transplant programs, the first question a prospective donor is asked is whether they really want to donate or feel that they are under an obligation to offer assistance. Because if it is the latter, the doctors will invent a reason for why they are unsuitable to donate so that they do not have to suffer resulting stigma of refusing to donate. A child can’t really be provided with this extra level of protection, making them especially vulnerable.
P.S. I guess I missed the notion that the family “assumed” that someone in their large extended family would be a suitable donor. How would you feel if you were asked to have yourself and your children tested to be a potential kidney donor for a cousin? I don’t think mental disability of the recipient is the biggest issue here, or, at least, it wouldn’t be for me. I think that’s a lot to ask and I am pretty sure I would be among those telling the doctors to tell the parents that I am unsuitable, and certainly, that my children are. Organ transplants are lifesaving and wonderful, but creating a sense of obligation to donate is horrid.
Mike has shown that we don’t need a child’s kidney to make it work, and mother has said that the family has donors. The questions about consent and availability are interesting (especially when children are involved), but, again, that is not what is generating the controversy in this case.
What is controversial is the fact that the transplant team checked a box for ‘mental retardation’ on Amelia’s application, and that (again, according to the mother), this is the stated reason why the application was rejected.
The article linked in the first line of the opening post is interesting.
Charles, we are not all required to frame the issue in accordance with your perspective. I honestly wonder what is going on since the institution agreed that mental status by itself would not be grounds not to put the child on a recipient list, regardless whether individual transplant surgeons might personally resist that step. I would also add that until the child is on the transplant list, it’s impossible to know whether there would be a match — first, “suitability” covers a lot of issues, not just biological matching criteria, and, second, it’s actually pretty common for people who are asked to donate to say yes in the abstract and then back out when the prospect becomes real. So I would bet that transplant surgeons would always assume that a recipient could end up getting a cadaveric donation. I don’t think they could ever leave someone off that list on the grounds that they might be getting a live donor — particularly if there is a possibility that the live donor is under 18. This is a sad situation all the way around and I hope they can work something out.
This case might not involve genetics, but it seems to me that if the sick child’s health problem is a genetic one, then the child’s relative who gives it a kidney might share the same genetic defect, and the genetically similar relative would then be at greater risk from having given away a kidney. What would happen should the relative become ill with kidney disease, especially if there were no other matching donors when the second transplant was needed?
What is controversial is the fact that the transplant team checked a box for ‘mental retardation’ on Amelia’s application, and that (again, according to the mother), this is the stated reason why the application was rejected.
Charles,
If you read the mother’s account, at one point the doctor says the medications the girl will have to take after a transplant may cause brain damage. The mother asks if other children who have transplants would have to take the same medicine. The doctor says yes, but it is different for their daughter, because she already has brain damage. The doctor and the social worker also discuss the issue of who will take care of the child, especially if something happens to the parents. Later the mother says:
Even by the mother’s own account, the doctor gave reasons other than mental retardation for not proceeding with a kidney transplant—the child is already brain damaged, and she would have to take medication that might do additional brain damage. Also, various experts in news articles have suggested dialysis as an alternative to a transplant.
As you yourself are cautious to note, we are getting a very one-sided account. But even from that one-sided account, it does not appear that the doctor said there is no other medical reason for not doing a kidney transplant other than that the child is mentally retarded.
With all this publicity and advocacy, the question in my mind is whether, if there are quite good medical reasons why the child should not have a kidney transplant, will this hospital stand its ground and be accused of bias against the mentally retarded, or will they cave (or some other hospital volunteer) and do a transplant that would otherwise have not been done.
The question of the degree of the child’s disability and her prognosis do affect one of the traditional RC criteria distinguishing “ordinary” from “extraordinary,” (or proportionate from disproprtionate burden, or whatever language one would like to use.) These judgments are traditionally not about procedures, but about the effect on the patient considered holistically–body, mind and spirit. The question of the child’s suffering from this procedure in light of her perceived benefit (likelihood for healthy/healthier life afterward,) is shifted by her inability to comprehend the reason for her pain. In pediatrics generally, children are submitted to painful procedures on grounds that the patient’s hoped-for healthy (or healthier) life down the road will compensate. This is less obvious with severe disability and poor prognosis, if indeed that’s the situation here. How much pain would we put a child through in face of her inability to understand why it’s being done, if there’s little hope of long-term benefit? And this leaves out the relevant (but not determinative) suffering of family and medical staff along with the child.
Steady now: I am NOT saying that this child should not receive a transplant on grounds of her mental disability. However, I am saying that her suffering matters, and her inability to understand why she’s put through a procedure affects her suffering, as does her prognosis, at least in traditional RC medical ethics.
To belabor a point:
Some 2006 (albeit most likely quite dated by now) stats on the cost of healthcare in the last 6 months of living (dying?) in the US. Note the interactive map that shows costs by state vs. the national average.
http://www.usatoday.com/money/industries/health/2006-10-18-end-of-life-costs_x.htm
But then there is this article: “The Economics of Dying. Myth: Most medical care dollars are spent in the last six months of life.” Arthur Garson Jr. and Carolyn L. Engelhard, March 31, 2009
http://www.governing.com/topics/health-human-services/The-Economics-of-Dying.html
Lisa, I think that’s entirely right. Extraordinary or ordinary means are tied to the particular person’s suffering o of those means.
David Nickol 01/19/2012 – 10:33 am :
The decision determines who lives and who dies. That can’t be objective.
I suppose doctors make life-and-death decisions frequently, but, hopefully, not in cold blood.