About a week ago, I was contacted privately about a situation that has since hit cyberspace very hard. A developmentally disabled girl, I was told, was being denied an organ transplant solely because of her disability. I made some private suggestions about what the parents might want to do to obtain help, but decided not to write about it until and unless the situation became public. It now has, and so I will opine. From the AP story:
Chrissy Rivera posted a blog entry last week that described an encounter she claimed happened at The Children’s Hospital. She and her husband were there to discuss treatment for her daughter, Amelia, who was born with Wolf-Hirschhorn syndrome, a rare genetic defect that can cause physical and mental disabilities. Amelia will need a transplant in six months to a year. Chrissy Rivera, 36, wrote that a doctor, whom she did not name, told her and her husband that Amelia wouldn’t be eligible for a transplant because of her quality of life and her mental condition. ”I put my hand up. `Stop talking for a minute. Did you just say that Amelia shouldn’t have the transplant done because she is mentally retarded. I am confused. Did you really just say that?’” she wrote. “I begin to shake. My whole body trembles and he begins to tell me how she will never be able to get on the waiting list because she is mentally retarded.”
We still don’t know that is what happened, or that the supposed decision to deny the transplant was based on quality of life.
But I think this does open the issue for discussion. Here’s how I see it:
Should a developmentally disabled person receive an organ transplant? All things being equal, yes. Under the same triage terms as all other patients. No preference given, but also no “quality of life” invidious denials.
Should disability ever be a cause for denial? Yes, but not based on supposed poor quality of life! Not based on a supposed reduced moral worth! Not based on a relative lack of societal utility!
Rather, if the disability is such that it triggers the usual disqualifying medical criteria that would also apply to an able bodied patient, it would be ethical to not provide the transplant even if it is the disability that creates the medical disqualification. For example, Mickey Mantle should not have received a liver transplant because he had metastatic liver cancer and would soon die anyway. If a developmentally disabled person’s disability created the same short life prognosis, it could be a legitimate ground for denial–if short life expectency would also disqualify an able bodied person.
In other words, a developmentally disabled person should be treated just like everyone else.
As to the case at hand, I don’t think we yet have enough information to make an informed judgment about what is going on. However, it could be a very important case. I will keep my eye on it and bring it up again if facts warrant.
January 19th, 2012 | 1:00 pm
The facts seem pretty clear to me; I buy the parent’s story. Anyone who is interested can also go to Change.org to sign a petition in support of the transplant. Just knowing about this stuff makes me sick.
January 19th, 2012 | 1:06 pm
I also think that a “short life expectancy” can be twisted to mean something it isn’t meant to. For instance, people with Down Syndrome have an average life expectancy of about 60 yrs, which is lower then the average life expectancy of 80 yrs, so, many people use that to deny them transplants based on the “short life expectancy” rule. I think you might want to make that statement a little clearer.
Wesley J. Smith Reply:
January 19th, 2012 at 1:11 pm
Well, that is clearly not what I meant, since I discussed that in the context of a Mickey Mantle situation. Short life prognosis based on specific medical critera, not life expectancy based on averages.
January 19th, 2012 | 1:07 pm
[...] Yes to Organ Transplants for Developmentally DisabledFirst Things (blog)A developmentally disabled girl, I was told, was being denied an organ transplant solely because of her disability. I made some private suggestions about what the parents might want to do to obtain help, but decided not to write about it until and …Mom claims in viral blog that disabled child denied transplantCNNDenying an organ to a 'mentally retarded' childWashington Post (blog)Hospital Denies Organ Transplantation to Three-Year-Old GirlFrench TribuneThe Takeaway -BioEdgeall 505 news articles » [...]
January 19th, 2012 | 3:49 pm
Just horrible that this is even a thing.
January 19th, 2012 | 4:41 pm
I know you didn’t mean expectancy based on averages, Wesley…just the whole thing, the fact that the situation even occurred-infuriates me.
Big Don Reply:
January 19th, 2012 at 9:01 pm
@Safepres, It’s not like this is a new problem. When the artificial kidney was invented in Seattle circa 1960, there was only one clinic for treatment with capacity of a few dozen patients. There was an anonymous committee that decided who was “worthy” for acceptance into the program…
pentamom Reply:
January 23rd, 2012 at 9:03 am
@Big Don, Yes, when you have a ridiculously scarce resource, then you have to limit it somehow. It’s a good thing this situation isn’t remotely like that.
This is a completely different situation, where the kidney may be out there and available specifically to this child, there are those who want to say it shouldn’t be given and received.
January 19th, 2012 | 4:50 pm
I’m going to be working on a post on this. I see no reason to question the parents’ testimony as to what was said, and what was said (according to them) was pretty explicit.
Moreover, it adds credibility to their story that this has been for many decades a known reason for denying transplant. In fact, there are papers on the web discussing the history of this very issue and the improvement that _may_ have come about from the 1990′s onward in access to organ transplant for the medically disabled.
The avowed reason *in the history of organ transplant*, independent of this particular case, is exactly the same reason that the parents testify that the doctor and social worker gave to them–namely, the claim that the mentally disabled patient would stop taking anti-rejection medications. This confirms that the people at the hospital said exactly what the parents recount. This is a long-standing issue in organ transplant.
Lydia Reply:
January 19th, 2012 at 6:01 pm
@Lydia, Sorry, that’s “mentally disabled,” not “medically disabled.”
January 19th, 2012 | 8:49 pm
Either lives have relative value, or they don’t. Are you going to give organs to murderers on death row?
Since there are nowhere near sufficient available organs for those in need, I’d give higher priority to, for example, nuclear family breadwinners with minor children…and put felons and geriatrics at the bottom of the list.
January 19th, 2012 | 10:00 pm
Big Don is right: “Either lives have relative value or they don’t.”
They don’t.
January 19th, 2012 | 10:38 pm
Big Don-please go make someone else throw up. You are a bigoted, cruel individual whose perspective, while technically welcome on a blog that honors the free exchange of ideas, has no moral credibility.
Big Don Reply:
January 20th, 2012 at 5:22 am
@Safepres, Not so fast there. When someone dies without having lived a full life, there is a lot of grief and anguish. Especially when it’s a child.
Now, the moral imperative might be to implement policies that minimize the total amount of such suffering. Medical science is now able to save numerous genetic defectives to live and breed more of their less-robust selves. So that generations down the road instead have having X amount of grief and suffering with Mother Nature calling the shots, you will ultimately have a fragile society with 10X or 100X of such suffering. I would question the “moral credibility” of that…
It might make more sense to just outlaw organ transplantation altogether. A single case produces huge costs for surgeries, and a lifetime of anti-rejection drugs, costs which are rarely borne by the recipients. This tends to raise insurance costs to where many folks are priced out of the market or otherwise limited for their *routine* medical care, with a corresponding increase in the suffering of those affected in that fashion – a net increase in total suffering for humanity. Where’s the morality in that…??
January 20th, 2012 | 8:22 am
Since there are nowhere near sufficient available organs for those in need, I’d give higher priority to, for example, nuclear family breadwinners with minor children…and put felons and geriatrics at the bottom of the list.
Your wish list isn’t an option.
If we are going to pick and choose who gets medical care and who doesn’t, then people with connections will decide who gets medical care and they will not decide based on ethical criteria. They will decide based on their own feelings and desires.
It might be that people split over whether to withhold medical treatment from “less valuable” people. Some of us will say, no, equality before the law is the founding principle upon which America was created, and a strength not a weakness. Others – like you – will say, go ahead, ration.
And you who ration will all agree that the disabled girl is not “valuable”. But once you’ve opened that door, you’re going to be shocked to find that your “valuable” people are not valuable. Do you really think the people with power and connections value “breadwinners”, according to your schmaltzy formula for how your own little pseudo-just world would divvy up scarce resources?
Surprise! You’re not valuable, either!
January 20th, 2012 | 11:50 am
BigDon-you have no sense of morality. You’ve called people with mental disabilities “gorks” and said that we should be aborted. So, don’t expect your infantile musings on morality to be afforded any credibility.
January 20th, 2012 | 12:13 pm
I don’t generally hype my own blog posts here, but this one seems quite relevant.
http://www.whatswrongwiththeworld.net/2012/01/the_blocking_of_the_mentally_d.html
I argue that the parents’ account is credible, based on other information about the denial of organ transplant to the mentally disabled.
As far as I can tell, I’m in total agreement with Wesley about the wider implications and concerns about rationing based on quality of life and mental disability.
January 20th, 2012 | 7:08 pm
[...] daughter has Down syndrome. …Mom claims in viral blog that disabled child denied transplantCNNYes to Organ Transplants for Developmentally DisabledFirst Things (blog)Bill would ban bias in transplantsCherry Hill Courier [...]
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