Yesterday a federal judge ordered the Department of Health and Human Services to suspend a Bush-era rule and place a 10-year-old girl on the adult lung transplant list. Or as conservatives headlined it: Court Orders Sebelius to Suspend Death Panel. (More)
“For the first time in months: hope”
The case involves Sarah Murnaghan, a 10-year-old girl with cystic fibrosis:
Sarah has cystic fibrosis and only weeks to live, according to her parents. She has been on the waiting list for children’s lungs for 18 months and in Children’s Hospital of Philadelphia since February.
The order does not mean that Sarah will be next in line for adult lungs; rather, she will be offered lungs before wait-listed adults whose need is less dire.
“For us, this means that for the next 10 days, Sarah’s placement in the queue for adult lungs will be based on the severity of her illness, and she will not be penalized for her age,” her parents said in a statement. “We are experiencing many emotions: relief, happiness, gratitude and, for the first time in months: hope.”
A Bush-era rule
Although conservatives have tried to tie this case to Obamacare, the rule barring children under 12 from being placed on the adult transplant list was passed in 2005 under the Bush administration:
In May 2005, the lung allocation system changed in the United States. Previously, lung organs were allocated based primarily on the length of time waiting for a transplant. Under this first come first served algorithm, all potential candidates had the same urgency status on the waiting list and there was no mechanism to account for an individual candidate’s clinical deterioration.
The new rule required the Organ Procurement and Transplantation Network and United Network for Organ Sharing to prioritize transplant patients based on “the highest medical urgency while maximizing utility by avoiding futile transplantation,” and the rule has worked very well:
Since it was implemented, the new lung allocation system has had a significant impact on lung transplantation. First, waiting time has decreased substantially. The median waiting time for patients listed in 2000 was over 1500 days, but this was 130 days for those listed in 2006. It should be noted however that the median waiting time consistently decreased between 2000 and 2004 before the new allocation system was implemented; indeed, the median waiting time in 2004 was approximately 800 days. Nevertheless, there was a considerable decrease in waiting time between 2004 and 2006. In addition, deaths on the waiting list decreased further from approximately 130 deaths per 1000 patient-years in 2004 to 97 deaths per 1000 patient-years in 2006. Furthermore, the annual number of transplants in 2006 was at record of 1401. While the Organ Donation Breakthrough Collaborative contributed to this, it is likely that the greater efficiency of the new allocation system also played an important role.
“Not just the instinct to save a child”
The under-12 exclusion from the adult list lay in the best medical estimates of doctors a decade ago:
The policy that the Murnaghan and their advocates are questioning is one that puts children under 12 at the bottom of the waiting list for lungs from adult donors. Young children would be first in line for lungs donated by kids their age. But far fewer of those are available.
In recent years, younger kids have been given greater priority for kidney and liver transplants, [NYU bioethicist Art] Caplan said, and that is in-keeping with the desire of donors that their organs provide as much life as they can. A transplant into an older patient might not provide the same number of “life years,” he said, an important consideration. But whether that’s in order for lungs as well depends on the actual science of transplanting adult lungs into children, not just the instinct to save a child.
While children can receive adult lungs, doctors normally transplant only a portion of the lung and, historically, that created additional risks. Similar risks were deemed minimal for kidney and liver transplants, and rule changes allowed children onto the adult waiting lists for those organs. Whether such risks are minimal for lung transplants is a matter of medical science, not political convenience.
“Suspend her death panel”
A federal judge ordered HHS Director Kathleen Sebelius to suspend her death panel and place 10 year-old Sarah Murnaghan on the lung donor list.
Hoft doesn’t mention the inconvenient fact that this is a decade-old rule passed by the Bush administration, and makes no attempt to deal with the medical science. Instead he hangs his case on an out-of-context quote from Secretary Sebelius: “Some people will live. Some people will die.”
Secretary Sebelius was stating that unavoidably harsh fact of transplant lists as the reason she should not intervene and make personal choices. And she was correct, as even the National Review’s Yuval Levin admits:
In fact, the logic of this situation works roughly the other way. The members pressing this case are asking a politically appointed official to take directly upon herself the role of making life-or-death decisions in individual cases. In an unavoidably zero-sum system like organ transplantation – where one person’s receiving an organ means another does not – there is basically no avoiding some utilitarian calculus, and such a calculus would best be based on an assessment of need together with an assessment of the likelihood of a successful transplantation with beneficial effects.
Instead this decision creates a different metric: whether a sick child’s family can afford a lawyer, or can drum up the political support to sway a government official. That will, as Levin writes, favor wealthy and well-connected families over others with equally- or more-needy children.
Sarah Murnaghan’s case is tragic, and I hope doctors find a donor and her surgery is successful. But her receiving those lungs would mean that some adult – who might have had a better probability of success with a complete lung transplant – will have died.
That is the harsh reality of organ transplants and we need to discuss it openly and rationally … rather than using a desperately ill 10-year-old child as a prop in a political campaign to smear Obamacare.