Hi. I am Art Caplan at the Division of Medical Ethics at the New York University (NYU) School of Medicine in New York City. Recently, an article in the New England Journal of Medicine[1] said that we ought to rethink how we deal with transplants in children who have disabilities. Often, kids with disabilities, like Down syndrome, have organs that are malformed and may need something like a heart transplant. Other kids just get the usual array of diseases that cause organ failure; they too may need a transplant. If we look at who gets transplants, we would see that people with disabilities, both kids and adults, are underrepresented. We know the incidence that should predict a demand for transplants in kids and adults with disabilities. We also know that they are often not selected to get a transplant. This leads to an interesting moral argument. If we have things like the Americans With Disabilities Act and other laws that prohibit discrimination, then should we not be transplanting everybody no matter what their intellectual capabilities or physical disabilities? Do they not all deserve the same chance at an organ? Some transplant clinicians will make a quality-of-life judgment and say, "I do pediatric heart transplants, and because there are so few, I am not going to give a heart to a child who is institutionalized and has basically no ability to enjoy life rather than a child with a malformed heart who is otherwise perfectly functional." Basically, they are saying, "I have a scarce resource, and I am going to try to maximize the way in which it is used to benefit not just length of life, but quality of life." It may not be consistent with the law. The editorial in NEJM said that these are hard cases and that we ought to consider making up a national committee to decide them. I think that is wrong. We ought to bite the bullet and draw the line and say that if you have disabilities that impair you so that you cannot have any quality of life, such as being in a permanent vegetative state, we are not going to proceed with transplant. It is just below a threshold where it does not make any sense to give somebody an organ who has no possibility to enjoy it or benefit from it. I know that there are those who would say, "Still, life is valuable." I am not disagreeing with that, but I think [advocating for] other candidates who in a sense can make more use of that organ is the way to go. Others will ask, "Should we then transplant kids with Down syndrome?" I would say: yes. They enjoy life. They contribute to their families, and their families enjoy having them. This is a situation where discrimination does not make a lot of sense. We are not going to solve the issue of disability and access to transplants with one more committee. To me, that is just punting the issue. What we need is a public and transparent discussion among the transplant community, patient advocacy groups, and disability groups and say, "Here is where the line is. Below that line, there is too much dysfunction. There is not enough ability to benefit from the transplant." It is too complicated to even try with some types of disabilities because the surgery can become difficult, or the compliance afterwards can be too much. If they are not in that category, then everyone else stands as an equal. Talking Points: Should We Refuse Transplants for People With Disabilities? Issues to consider: There are currently 119,000 men, women, and children on the national transplant waiting list.[2] In 2016, 33,500 transplants were performed. On average, two people die each day waiting for a transplant. Before the 1990s, mental retardation (MR) was regarded as a contraindication for solid organ transplant operation. The main worry was that people with MR lacked the cognitive skills to comply with complex posttransplant antirejection medication regimens. Today, according to the Scientific Registry of Transplant Recipients, many children with intellectual disabilities are on the United Network for Organ Sharing (UNOS) waiting list and are receiving transplants, and the survival rates are comparable to those in the general population. The Americans with Disabilities Act prohibits discrimination against people with disabilities and directs medical professionals to provide the same access to organ transplants. Some healthcare professionals contend that cognitive function should not be a basis for allocating organs because it allows healthcare providers to decide that some lives are more valuable than others. Cognitive impairment is one of several legitimate criteria on which allocation decisions may be based, according to some healthcare professionals. Some healthcare professionals object to transplants for patients with cognitive impairments, saying that because organs are scarce, a decision to transplant one into a patient with cognitive impairment will often mean that another patient with no (or milder) impairment will die for lack of a transplant. Difficulties in following postoperative recovery programs and adhering to immunosuppressive regimens are factors that could limit the benefits of transplantation for cognitively impaired patients, say some healthcare professionals. Source
