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Organ Transplant Discrimination Against People With Disabilities

A 25 year old man named Paul Corby who has never smoked, drank, and is otherwise healthy except for a congenital heart defect that his father died from at age 27. The only way he will survive is by getting a heart transplant. However, Paul has been denied the transplant due to the fact that he has autism. The doctors who denied him are using flimsy excuses to justify their behavior.

His doctors said he “can’t even list all his medications” from memory, as if that’s a good enough reason to suggest someone doesn’t deserve life-saving medical treatment. For what it’s worth, I take about 14 medications, and as an allistic (non-autistic) person, I often struggle with recalling every single one when I go to the doctor. Does this mean my doctors shouldn’t give me medical treatment?

What the doctors are getting at by saying Paul can’t list all of his medications is that Paul may not follow after care instructions if he gets a transplant. This excuse is also flimsy, as about 50% of people in the general population do not take their medications as prescribed. If you want to focus only on people with heart conditions following medicine regimens, “Within 2 years of initiating therapy, only half of patients hospitalized for acute myocardial infarction [heart attack] were still taking their prescribed statins, beta-blockers, angiotensin-converting enzyme (ACE) inhibitors, or angiotensin receptor blockers (ARBs).” Obviously, drug non-compliance is a huge issue (it’s a factor or cause in over 125,000 deaths in the US every year), but why single out autistic people when this is a problem that the entire population faces?

When I had a bowel resection in 2012, I ended up getting an infection at the surgery site that needed to be cleaned out three times a day for several weeks. I wasn’t able to do it myself, so my partner had to do it for me once I left the hospital. Should I not be a candidate for further surgeries because I needed help from someone else after surgery? If you’ve never had surgery, you may not know everyone needs help after an operation (usually, a lot of it). That’s why we have hospital, nurses, and caretakers. My insurance company would have covered having a nurse come by my house daily or weekly to make sure I was following my post-surgery instructions, but my partner was able to handle it on his own, so we didn’t need one. However, if I had needed one, that wouldn’t have made me a “bad” patient or someone who is unworthy of life-saving medical procedures. Obviously Paul’s mother is active in his life, so she could help him post-transplant, or they could hire an at-home nurse. Neither of those things are unusual. So again, why single Paul out?

Unfortunately, Paul isn’t really being singled out. Discriminating against people with intellectual or developmental disabilities with regards to organ transplant is a national trend. According to the Autistic Self Advocacy Network,

A 1992 survey of 411 transplant centers by Levenson and Olbrisch found that individuals with IQs between 50 and 70 would be considered absolutely contraindicated from receiving a heart transplant in 25% of transplant centers, with 59% stating a relative contraindication. When the same question was asked for patients with IQs under 50, almost 3 in every 4 transplant centers indicated an absolute contraindication. (Source)

Since most of the information regarding this situation is delivered by Paul’s mom, she could leaving out important info. Perhaps Paul has some rare blood type and doctors think it is unlikely that they will get a heart from that blood type. Maybe Paul has some compounding condition that makes it probably that his body would reject a transplant. We don’t know for sure, but I’m willing to take Paul and his mother’s word on this, given that there is significant evidence of this happening to other people with mental disabilities. Fortunately, a Pennsylvania state legislator believes them as well, and introduced a bill called “Paul’s Law” that would end discrimination against people with disabilities who need a transplant. This follows bills that have been passed in New Jersey and California for the same issue.

While legislation like this is a great step, I think we need to do two other things. We need to recognize & stop the discrimination against people with intellectual and developmental disabilities, and we need to make organ donation opt-out instead of opt-in. According to the NY Times, “In Germany, which uses an opt-in system, only 12 percent give their consent; in Austria, which uses opt-out, nearly everyone (99 percent) does.” I believe (and I assume most readers of this site also believe) that once you die, that’s it. You’re gone. You have no more need of any of your organs, because you’re dead. So why wouldn’t you give up your organs once you’re dead? Now that I’ve convinced you, if you aren’t already signed up to be an organ donor, you should sign up now.

If you’d like to show support for Paul, his mother created a petition on Change.org, and the lawmaker who is sponsoring the Paul’s Law has a petition on his website as well. And again, please register to be an organ donor.

 

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Sarah

Sarah

Sarah is a feminist, atheist vegan with Crohn’s Disease, and she won’t shut up about any of those things. You really need to follow her on Twitter (and probably Google+, just to be safe).

9 Comments

  1. June 26, 2014 at 11:01 am —

    It may be that organ transplantation is an area where typical standards of morality need to be reconsidered. The job that the board faces is pretty intense. There are many people who need organs, but not enough organs to save the life of everyone who needs one. Any decision you make will result in life for one person and death for another. How do you decide who gets to live?

    If they give this person an organ, they are effectively sentencing someone else to death. The reason they look at (in their opinion) a person’s likelyhood to be able to follow a regime of medicine is that not that if someone fails to take thief medication and reject the organ, they have wasted a resource that could have saved another life.

    They aren’t badguys , they’re just trying to make the best decision they can about a limited life saving resource. Is it fair? No, it would only be fair if organs were plentiful. Is it moral? I can’t say.
    Liver transplants look at things like history of alcohol abuse even in recovered alcoholics. Its not a moral judgement of autism, or alcoholism, its a playing of the odds.

  2. June 26, 2014 at 12:40 pm —

    I go back and forth on this issue, because organ transplants in the US are, as you point out, on an opt-in basis. So there is this perpetual and extreme shortage of organs, and each transplant choice saves a life while possibly ending another (or several others). In this case, it sounds like he has some major language deficits. I googled his ‘self-published novel aimed at preteens,’ and I can tell you, this alone would make me extremely concerned that this person would not be capable of reporting symptoms of rejection or medication side-effects, assuming they were capable of even internally recognizing them. Perhaps his caregivers would notice, but perhaps they would attribute it to Paul’s mood disorder, his other medications/side effects, or his autism, and not recognize it as rejection until it was too late. And if that would mean the heart would be more likely to go to waste if transplanted into Paul Corby than another hypothetical patient without those deficits, it’s hard for me to say we should effectively waste the heart in order to not discriminate.

    I can’t agree with the blanket idea that we should never discriminate against a person for having a mental disability, because that term is so broad. Let me give you two examples. You said he never drinks or smokes, which seems to imply that it is ok to discriminate against people who drink or smoke. But substance use disorders are considered mental disabilities, and are protected so long as the person is not currently using illegal drugs. So wouldn’t it be irrelevant what their past use had been?

    The second example is of someone in a persistent vegetative state. Should they get organ transplants if necessary? Should someone mentally equivalent to Terri Schiavo have been put on the transplant list if she had needed a donor heart, knowing everything we know now about Schiavo’s neural degeneration? If not, then there must be a line somewhere. If so, I disagree with that. I think we have a moral imperative to give an organ to a person who won’t let it go to waste (whether intentionally or due to mental disability). And I say that knowing that I have a cognitive disability that could easily be used as a basis for denying me a place on the transplant list.

    The other thing to consider is heart transplant surgeries are incredibly dangerous and could kill Paul. Paul Corby’s father died at 27, but no one knows for sure whether Paul will as well. But let’s say he’s only got 1, maybe 2 years left without a transplant. We give him a heart transplant. He can’t follow discharge instructions, because of his mental disabilities, and for many, many potential reasons, he ends up passing away in septic shock six months following the surgery.

    We in effect, robbed him of at least 6 months of his life, and inflicted a lot of suffering on him in his last six months of life, because we didn’t respect the fact that he’s very intellectually disabled. (His mother sounds like she’s very much in denial about her son, with the way she talks about how writing his ‘novels’ is the only thing that takes his mind of his mortality.). But maybe he’d live to be 30, or 35, or even 40 before dying of this heart defect. Now our choice to give him a heart transplant he couldn’t maintain seems more unethical, doesn’t it?

    That said, I think you also hit on a possible solution to this problem, mandatory organ donation. However, just knowing what the supply of hearts is doesn’t tell you much about whether there will be enough of the right hearts at the right time for to go around for all the patients who need them, all the time. So I suspect that even in the best of circumstances, we will still need to have these conversations until we can make artificial organs that don’t have any biological or circumstantial constraints on their supply.

    • June 26, 2014 at 4:34 pm —

      Heart transplant surgeries could kill anyone who has them. They’re done because they need to be. He’s on the list for a reason. I don’t really get why that is relevant here.

      I googled him and his book too. I don’t see anything that suggests he’s all that incapable of reliably taking daily medication. See how much that is a matter of opinion when you have never met a person (like his doctors dismissed him before speaking to him, too)?. His books get quite high reviews on Amazon too, I don’t know what’s wrong with them? Especially don’t get comparing intellectually disabled people to people in vegetative states.
      Even if he was incapable of keeping up the medication on his own: people looking out for him might, as you say, be able to remind him. He might or might not take the medication, we really don’t know either way, so he shouldn’t even get a chance? Then that would go for quite a lot of people. You seem to be making the argument that we need to draw a line somewhere, but you don’t really address stuff like this.

      As we see above, most people don’t take their meds. If we have an obligation to only transplant to people who will definitely take their meds, maybe we should just stop transplanting for anyone (that would clear the waiting list right up too). Because you really can’t reliably tell in advance who will or will not take care of their meds properly. Or perhaps by going to waste, you don’t just mean people who could lose the organ by not taking meds, but the organ simply being in someone you don’t deem to have enough worth. That’s a dangerous thing to do: it’s so subjective. I wouldn’t consider the world a worse place if an organ went to someone like Paul and the next Einstein might die because of it (there’s really no way to tell anyway).

      Plenty of people who do take their meds, still lose the organ anyway, too. There’s just too many uncertainties here to deny people based on diagnoses like this. And you speak of the hypothetical situation of him losing the organ and dying as if it’s already happened. I’m also not sure why you want to turn it around so that giving him the transplant is the unethical thing to do, instead of the other way around.

      Another way to help this in addition to making donations opt-out, is to have better check ups on people who take meds like this: in countries where people’s doctors keep a closer eye on how they’re doing with their meds (also just for antibiotics and such), you get a lot less misuse of meds and also, for example, less development of resistant bacteria or viruses.

      • June 26, 2014 at 4:36 pm —

        Also by ‘ stuff like this’ I mean: no one talked to Paul and they haven’t done an actual evaluation of his condition before they deny his transplant.

        • June 26, 2014 at 9:10 pm —

          I suspect they did a medical evaluation of Paul when they put him under conservatorship. Now, I don’t know for sure that he’s conserved, but that’s my guess, which would explain why his mother is the one talking to doctors on his behalf even though he’s 25.

          Also, you said: ” And you speak of the hypothetical situation of him losing the organ and dying as if it’s already happened.”

          It HAS. Not yet, to Paul, but it’s happened. But take a second and pretend that that’s how it went down. In retrospect, was that the ethical thing to do? That’s the point. It’s a predictable consequence of a major medical intervention, and from the doctors’ perspective, not intervening is more ethical sometimes than intervening and doing more harm than good.

          “I’m also not sure why you want to turn it around so that giving him the transplant is the unethical thing to do, instead of the other way around.”

          Because sometimes giving someone a medical intervention is the unethical thing to do, rather than the other way around.

          • June 28, 2014 at 10:21 pm

            Where did you read that Paul is under conservatorship? His mother is the one talking to the media, yes, but that’s very different than being the one talking to the doctor (talking to doctors doesn’t require the same level of public speaking abilities that talking to the media does). Also, there’s a huge difference between bringing a family member with you to major doctor appointments & having a family member talk to doctors for you while you aren’t present. I’m 25 & my partner comes with me to major doctor appointments, partially because I sometimes get flustered/nervous talking to doctors, and also because I think my doctors take my pain more seriously if someone else (especially A Man; thanks sexism in healthcare!) verifies that I’m telling the truth. I think you’re unfairly assuming things that we don’t know for sure.

          • June 30, 2014 at 12:31 pm

            You’re right, I don’t know for sure. It’s just my suspicion given my (granted, limited) experience with several adult clients who have ASD and are conserved.
            His mother stated he “spends his days playing video games and writing the sequel to his pre-teen, self-published novel.”

            His reasoning seems very delayed, e.g., ”

            “At first he was OK with it because he thought, ‘At least I don’t have to go through that surgery,’” his mother said, “and then he thought, ‘Why not? Why don’t they like me?’

            http://www.disabilityscoop.com/2012/08/14/claim-heart-transplant-autism/16251/

            According to that article, this same transplant team has done a heart transplant on at least one other patient with ASD.

            But it’s not that important a point, since I’m definitely not saying anyone conserved should be ineligible for a heart.

            The big issue for me, is still whether this is actually a good idea for Paul, given his mental disability. Yes, he could die from left ventricular noncompaction (which probably involved some physical exam as well that were probably submitted to the organ transplant board to document his condition and need for a transplant) – possibly suddenly and without warning. If he dies the same age as his father, he’ll have 1.5-2 more years.

            If he does nothing, he might live several more decades as, at least in this particular study, average age at diagnosis of this condition was 42 Source: http://content.onlinejacc.org/article.aspx?articleid=1126608. If he’s not in active heart failure right now (which I haven’t read anything saying he was, and they’ve been trying to get on the list for 2+ years now), I don’t know how anyone can say for sure he will get more years/higher quality of life from a heart transplant at all, much less asap.

            Heart transplants carry with them a very high risk of morbidity and mortality. In fact, if you get a heart transplant, it’s literally a coin flip whether you’ll be alive in 10 years. (http://integrisok.com/nazih-zuhdi-transplant-institute-oklahoma-city-ok/heart-transplant/heart-transplant-life-expectancy-statistics). So again, if he could conceivably have lived to be even 42 without diagnosis, but will only live to be 35 with the transplant, is giving him the transplant really the ethical thing to do? What about giving him the transplant instead of giving it to someone who was definitely going to die in a few months, but will also live only 10 years with a new heart?

            It’s interesting to me that so much of the media attention I’ve seen given to this case focuses on the fact that the doctors denied him in part, due to his autism, rather than focus on another part, the unpredictable effect of the steroids he’d need to take on his behavior, given his mood disorder. I’m guessing it has a lot to do with the fact that ‘autism’ as a diagnosis doesn’t really tell you much about their functional abilities, which makes for better linkbait, whereas an unspecified “mood disorder” may imply a tendency to self-injure (or may just be that mood disorders are still more stigmatized than autism, which is heavily associated with cute kids and supergenius TV characters). He’s also obese, which adds another level of risk both to the surgery itself and to his recovery, and increases the likelihood that he will damage the heart with lifestyle habits (whether he smokes is another red herring I see these articles using – the fact is, obesity is poised to overtake smoking as the biggest cause of heart disease. http://www.cbc.ca/news/health/obesity-to-overtake-smoking-as-worst-heart-disease-risk-factor-1.2648847).

      • June 26, 2014 at 9:05 pm —

        Yes, heart transplant surgeries could kill anyone who has them. The relevance was stated pretty explicitly in the following sentences. Yes, he’s *trying* to get on the list for a reason, but the point here was that if the surgery kills him in 6 months, but he would have survived 2 years without it, the surgery was not the ethical thing to do. Do you disagree that it is better that he live 2 years than 6 months?

        ” I don’t see anything that suggests he’s all that incapable of reliably taking daily medication.”

        I don’t think I said otherwise. What I did say was: “[I would be concerned that] this person would not be capable of reporting symptoms of rejection or medication side-effects, assuming they were capable of even internally recognizing them. Perhaps his caregivers would notice, but perhaps they would attribute it to Paul’s mood disorder, his other medications/side effects, or his autism, and not recognize it as rejection until it was too late.”

        ” Especially don’t get comparing intellectually disabled people to people in vegetative states.”

        Really? Are people in vegetative states not intellectually disabled? Are they not people deserving of the same rights and access to medical care as anyone else (assuming they do not have advanced directives to the contrary)?

        “Then that would go for quite a lot of people. ”

        Yes, and it does, every single day, because we don’t have enough organs to go around.

        “Or perhaps by going to waste, you don’t just mean people who could lose the organ by not taking meds, but the organ simply being in someone you don’t deem to have enough worth. ”

        I pretty clearly meant “someone who is now a corpse.” I don’t want donor organs to end up in corpses.

        And if you want to talk worth? Let’s talk worth. Let’s say you know in advance that person A and person B both need a new heart. Person A is 34, has a wife, a dog, three kids and works at an animal shelter. You know that Person A will get 5 years of life before needing a new donor heart or passing away.

        Person B is a 56 year old, rude, misanthropic hermit who has alienated anyone who ever showed him a little kindness. He still lives off his trust fund and mistreats his only pet, a fish. Person B will get 11 more years of life from the heart transplant.

        Who is most “worthy” of the heart transplant? You only have one heart. They’ll both die this afternoon if you don’t transplant it into one of them, and the donor heart is starting to die with every moment.

  3. […] Organ Transplant Discrimination Against People With Disabilities. [TW: Ableism] See, because people with disabilities don’t really deserve to live, so they don’t get organs. […]

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