“We cannot solve our problems with the same thinking we used when we created them.” ~Albert Einstein
Get ready to hate Single Dad.
The last post was about something in the news, something that we only know one side and second hand, but this is what I think we all heard … Some family has a disabled child who for whatever reason needs a kidney. A big city, top notch hospital doctor recently told the family something to the tune of:
We will not give your daughter a kidney because she is mentally retarded.
That is the gist that we are hearing, it may or may not be true, and that is not the discussion here. No matter what, there are nuances and things we don’t know.
But here is what I have been wrestling with the last few days …
You are in charge. You have one kidney and two patients who are a medical match for the kidney and both need it to survive. Neither can wait. Various scenarios, who gets the kidney? …
- Two young teenagers, a boy and a girl. Normal, adjusted, healthy but for the need of a kidney.
- An MBA candidate from Columbia University and a homeless 45 year-old man.
- Your husband and a recently released multiple sex offender.
- Your 19 year-old otherwise normal daughter and Pearlsky, a severely disabled 19 year-old with completely unknown future medical path.
There is a reason that Mike Dukakis got roasted for the answer below. How do you make a major decision when it involves a loved one, or someone similar to your loved one? How do we – the community of which this blog belongs – how do we relate to what we think happened at that hospital?
I don’t know. It haunts me. But screw you, Pearlsky gets the kidney.
I don’t know if you meant to highlight a different kind of scenario, but what you offered us here is not the situation I understood from the post you linked to. From that scenario, I gathered the parents were not asking for their daughter to be put on the transplant list, they were asking for the doctors to test family members for potential matches. In other words, the kidney would not have gone to someone else, it would have gone to their daughter, or no one else. But the hospital still refused to test the family members, because they decided the daughter didn’t “deserve” a transplant at all.
Doctors have to make tough choices. I think we all get that. This shouldn’t have been one of them.
I know this isn’t really your point, it’s just a jumping off place for a bigger issue! But it’s worth pointing out that in the story you’re talking about, the family was going to donate a kidney to the child. They weren’t asking to place her on the donor list, so there would never have been a situation where someone had to choose between recipients. They were told that they would not be allowed to donate a kidney to their own child.
When I saw your tease-line, I was preparing to hate you because I thought you were going to agree with the asshole doctor who said the little girl didn’t deserve a transplant. Saying that you would choose your own child over another person doesn’t make you hateable – it just makes you a parent.
I think the scenarios you gave are all points for debate in ethics in medicine. That is exactly why a scoring system was devised to rate individuals waiting for organs to be transplanted so that such decisions are made as free from bias as possible. The qualification and points worksheet obviously needs some updating from the Dark Ages. Except when it is your child and then screw it all, they get the (insert necessary item here), because that is what love is all about.
Having dealt with CHOP for some life threatening pediatric issues, I can say that not once did I even sense the message the doctor in this situation was giving Amelia’s parents. It was wrong for the doctor, if he did indeed say what has been reported, and does not mesh with how I saw that hospital operated.
I do not know what rules the transplant committees use to decide who gets what place in the organ line. Forms of triaging are in use. I hope that IQ is not one of them. It should not be. My friend’s daughter was on the heart transplant list for a long time, and the factors that she told me were in play the most were how urgently the transplant was needed and the chances for of surviving the transplant and living (no period specified) afterwards. They seem to me, to be difficult factors to juggle since one affects the other negatively in terms of moving up the list.
Realistically, I don’t believe the “line” is fair, any more than it is for other things in life. I do not believe it was a coincidence or providence that someone who was a perfect match happened to come into the former governor of PA’s hospital when said governor needed a transplant and should have been far lower on the list than he was in getting the organs needed when he did. I also do not believe Steve Jobs was waiting in line with everyone else.
In the cases you have given, SD, the decision as to who should get the kidney in each situation should be determined by who best fits the medical profile outlined in the transplant priority rules. Those rules do not have any judgment as to who is a better person to get the organ, other than taking certain listed factors such as other disease, medical conditions and life style choices that decrease the chances of surviving the transplant such as smokers in a lung transplant situation, alcoholics in a liver transplant situation. Mental ability should not come into play at all. Whether they do, in these committees, is a whole other issue, though I have known kids with other challenges “make” the transplant list.
If I could design a system that selects the priorities, The decision would be made with certain medical aspects getting points without committee members knowing who has those conditions. The points would then be added up and the list thus made. Any ties in point numbers would be decided randomly by computer draw.
In such a situation, those who are disabled would be at a disadvantage. Anyone with a host of medical problem, already on medications, would have a reduced chance of success in a transplant situation. So would those have a disease that adds to complications. That is the reality. However, there should be no judgment in terms of who is more entitled than another based on judgment on who is more useful to humanity, who is more “important”, who is terrible person.
In the case of this young girl, Amelia, the issue of getting spot on the organ list was moot since the family had a live donor for her new kidney. THey just needed a doctor and hospital to do the transplant. From what I read, the doctor who spoke to the parents denied the procedure itself. Not knowing enough about the condition that Amelia has (outside of needing a kidney transplant), it is possible that the risks and likelihood of success in improving her life were such that she did not meet the criteria for such a procedure. But the story specifically states that the doctor singled out Amelia’s mental deficits as the reason for the denial, not that her medical situation was so unstable that he did not want to risk the transplants or that the transplant could cause more trouble than solving the problem.
I have not read CHOP’s stance on this. For transplants, from what I know, it is not a single doctor’s decision. It goes to committee. It could be that this doctor refused to even take it there.
I, unfortunately, believe that factors that should not come into play, do in medical treatment. It is something that we need to watch for ourselves and for our lovedones. IF the story did occur as reported, shame on that doctor, and I am so sorry that the family had to suffer his bigotry. I do think, given the publicity that this case has gotten, Amelia will get her transplant unless there is a good medical reason not to do it.
I read this story last week and felt saddened and angry by it – today I read more information which also linked me to a petition of which I signed.
No child (or adult) should be denied an organ transplant due to their mental capabilities!
As a mother of an organ donor I can say with 110% confidence that my boy would not of wanted any kind of discrimination when his organs were donated and I know I wouldn’t either!
What happens if someone is given a transplant and a month later they have an accident and are left severely disabled, do people then go, “oh bugger, they just had a transplant, if we’d known this was going to happen we would of given that heart to someone else!”
Amelia is just as important and beautiful as any child in any family in any place over the world and her parents should not have to be going through this BS at all!
Much love to this little girl and her family.
The old Sophie’s choice (and I’m not talking about my Sophie. I’m talking about William Styron’s Sophie or Meryl Streep’s Sophie). Or should I call it Single Dad’s choice?
It sort of reminds me of a tortured argument my sister and I used to have that went like this: “Ok. You HAVE to kill mommy or daddy. Who would you kill?” “NO! I wouldn’t choose either one!” “You HAVE to choose. Who would you choose?” “NO! I can’t choose!”
This game was very titillating — like the frisson of the horror movie.
In all seriousness, though — the whole nature of those kinds of choices generally makes me just shut down and retreat into the land of the absurd. I have no idea what I’d do and hope to never be tried. If I were I would TOTALLY flip a coin.
If I were a doctor, or if it were my organ being donated after my death, then in all four cases, whoever would die first without the kidney, because maybe another kidney would come around for the other person given more time. If it was my kidney that I’m donating for the express case of someone I care about, then the person I care about.
Me, too! I’d pick my kid. I would also fight with every ounce of strength against anyone who attempted to use the professorial ethics of a Mary Anne Warren or Pete Singer and considered my son a marginal social commodity in a decision making process.
Well I know what I’d say for option 2…I’m kidding. My lefty side is hard to ignore.
The experts in charge of the donor organ registry have a hell of a job, creating the criteria for recipient’s fitness for an organ. I don’t see why “mental retardation” would be a category in line with diseases that directly affect the body’s ability to accept the organ. If that’s the true reason, it’s not right.
Although I was a kid, I remember Dukakis’s answer, and my dad explaining to me why it was the right one. It was a stupid question, and Dukakis would have been roasted either way. We don’t get to decide law based upon just upon anecdotal, personal feelings. That’s why we have a society, and don’t just live in “nature,” to hearken back to Aquinas, Locke, Moses, and our Talmud.
I just can’t wait until medical science gets to a place where this becomes a moot issue. Technology is blooming; where are the bionic kidneys?
I think questions like that are supposed to be haunting, there is no other way. And there is no correct or ethical answer, can’t be. No one has the right to decide who lives or dies, period. Not me, not the doctors, not Peter Singer. We are not meant/built to.
I think questions like that are supposed to be haunting, there is no other way. And there is no correct or ethical answer, can’t be. I believe that no one has the right to decide who lives or dies, period. Not me, not the doctors, not Peter Singer. We are not meant/built to.
The video at the end of this post seems to add to this discussion:
http://www.theredneckmommy.com/2012/01/06/whacky-tobacky/
The truth of the matter is that most everyone would fight tooth and nail for self and loved ones. That is why some sort of standard has to be imposed on scarce resources with uninvolved parties allocating them. In reality, it doesn’t work that way, but we try to make it that way. I don;t think Steve Jobs or Former governor Whatshisname were waiting in much of line for their organs.
Up-thread, someone mentions, “In the case of this young girl, Amelia, the issue of getting spot on the organ list was moot since the family had a live donor for her new kidney. THey just needed a doctor and hospital to do the transplant.”
A transplant isn’t “just” an organ–doctors spending time on a case takes time away from other cases (just the operation alone can last hours); hospitals have facilities with limited numbers of ORs and beds; drugs are not in short supply but nursing staff to administer them frequently is. You’re asking them to commit a lot of resources to operate on a child who is already immuno-compromised (the mother mentions this elsewhere on that site), with a very poor prognosis even if she survives the operation. I’m not saying what CHOP did was right or wrong, but it’s not like saying “Oh, we don’t need to get on the donor list” erases any of the other problems associated with the transplant.
Anonny-Nonny: That is kind of bullshit. This isn’t some kind of charity. They are PAYING for those nurses, that medication and the cost of the procedure. In the same vein, if a mentally challenged person goes to eat at a restaurant, should they turn them away? They have only so much food, tables and waiters/waitresses… They have every right to be served. They are paying for the freaking privilege. I never get worked up, but that pissed me off almost as much as the original story.
I’d like to give you the benefit of the doubt and assume that you are playing devils advocate, but you know what happens when you assume.
Anonny-Nonny: That is kind of bullshit. This isn’t some kind of charity. They are PAYING for those nurses, that medication and the cost of the procedure. In the same vein, if a mentally challenged person goes to eat at a restaurant, should they turn them away? They have only so much food, tables and waiters/waitresses… They have every right to be served. They are paying for the freaking privilege. I never get worked up, but that pissed me off almost as much as the original story.
I’d like to give you the benefit of the doubt and assume that you are playing devils advocate, but you know what happens when you assume.
Whether or not that will keep Amelia alive long term should not factor in. The family is looking to give her a gift. No one should have the right to tell them no.
ACK. Sorry about the double post.
I love the Einstein quote you chose. My son just wrote a research paper about him.
It’s very quiet out there. Is everything OK?
Yes, JWG, I was wondering the same…I hope all is well in Single Dad land.