Remember the long fight over whether Sarah Murnaghan, the little 10-year-old girl from suburban Philadelphia who was dying from cystic fibrosis, should have a shot at getting a transplant from lungs taken from an adult? The fight hinged in part on whether there was sufficient evidence to show that adult lungs would work as well in Sarah, who is still struggling to recover from two lung transplants, as they would in another adult where they would fit better. Some, including me, argued that the best way to allocate scarce lungs for Sarah or anyone else is to determine who is most likely to live if they get them.
That may seem a sensible ethical policy to use when there are not enough organs for all. But there is a new study out that calls into question the merits of an efficacy-only rationing policy.
There is a group of kidney transplant recipients out there that gets a lot of organs despite very high failure rates. This group is “the highest risk of any age group [for] graft loss … starting at one year after transplant, and amplifying [getting worse] at three, five and 10 years after transplant” a new University of Florida study shows. And these lousy outcomes are in part due to the failure of this group to take their medication, follow medical instructions, and simply do what their doctors know has the best chance of making their transplants work. Who are these people whom we continue to give kidneys to, knowing that they don’t take care of them properly and thus waste a very precious resource? Teenagers.
Teenagers who are 14-16 years old -- and especially poor, black teenagers -- do much worse post-kidney transplant then any other age group. Dr. Kenneth A. Andreoni of the University of Florida, Gainesville, and his colleagues clearly saw how poorly teenagers do when they analyzed the outcomes of 168,809 first kidney-only transplants performed from October 1987 through October 2010.
“The realization that this age group is at an increased risk of graft loss as they are becoming young adults should prompt providers to give specialized care and attention to these adolescents in the transition from pediatric to adult-focused care. Implementing a structured health care transition preparation program from pediatric to adult-centered care in transplant centers may improve outcomes,” Andreoni and his colleagues conclude in their analysis.
That conclusion is ethically fascinating because it is so generous to a group with undeniable bad outcomes linked to bad behavior. But there is another conclusion possible from this data: Put teenagers at the bottom of the waiting list for kidneys. They do much worse then those younger and older, so put them last.
So should we shove teenagers off the lifeboat first? (And parents of teenagers may not answer this question.) No. Another factor must be taken into account in rationing kidneys or for that matter any scarce medical resource. Teenagers, just because they are teenagers, need to be cut some slack. We want them to get a chance to live a full life even if they don’t want to do what adults are telling them to do to make that happen, be it with a kidney, a car, drugs, sex and many other things. Rationing cannot just be about who has the best chance to live. It also has to take into account the moral claim that younger people—be they teenagers with kidney failure or Sarah Murnaghan with lung failure—have to reach adulthood. Efficacy does and should count in rationing health care. But it isn’t, and should not, be the only value that guides decisions about life and death.
Arthur Caplan, Ph.D., is the head of the Division of Medical Ethics at NYU Langone Medical Center.
First published July 29 2013, 2:54 PM