Was it ethical for 10-year-old Sarah Murnaghan to receive a lung transplant?
Arthur L. Caplan, director of NYU’s Division of Medical Ethics at Langone Medical Center, spoke about the ethical dilemmas surrounding Sarah Murnaghan’s lung transplants during a lecture presented at the University of Illinois College of Medicine. In June 2013, 10-year-old Sarah was dying from cystic fibrosis when her parents, Janet and Fran Murnaghan, launched a controversial campaign challenging the “under 12” rule for organ transplants. They asserted their daughter was a victim of age discrimination, because priority is given to adolescents 12 and older.
On June 5, Judge Michael Baylson directed Secretary of Health and Human Services Kathleen Sebelius to temporarily suspend the rule following an emergency hearing. According to Baylson, the rule “discriminates against children and serves no purpose, is arbitrary, capricious and an abuse of discretion.” Sarah was added to the adult transplant list.
However, Sarah’s first transplant failed within hours of completion, partly because the new lungs were infected with pneumonia. Three days later, Sarah underwent a second transplant and received another set of lungs.
According to The Associated Press: “Her mother said after Sarah’s second lung transplant that those lungs were infected with pneumonia but doctors had removed the infected portion before the transplant and the girl’s condition was too dire to wait for another set of lungs to become available. That transplant did prove more successful, and Sarah was able to take a few breaths on her own after doctors removed her breathing tube.”
In order to breathe, Sarah now requires a ventilator via tracheostomy.
Can Any System Of Rationing Withstand The Plea Of A 10-Year-Old Girl?
Caplan began his lecture by explaining the intricacies of the Organ Procurement and Transplantation Network (UNOS). “It is a system that has functioned well, doing something that a lot of people think can’t be done in the United States– rationing,” he said. “In the field of transplantation, there aren’t enough organs to go around, you all know there are many, many people who die without getting one.”
Patients seeking organs must first be admitted to a transplant center and deemed suitable for a transplant. Each center has its own method of evaluating potential candidates.
“When UNOS is looking down the list, they have different criteria for determining who is going to get an organ off the list,” Caplan explained. UNOS examines a variety of factors before deciding who receives an organ. Those factors include tissue and blood type, organ size, sickness and geography. “This system has been successful in rationing organs for almost 30 years, and people have accepted this system,” Caplan said.
Sarah was born with an aggressive form of cystic fibrosis. “She was really sick by the age of seven or eight, she was dying. She had many of the symptoms you would expect to see in a very much older patient,” Caplan explained. Sarah lived in the affluent Newtown Square, PA, and she received much of her early care at Children’s Hospital of Philadelphia (CHOP).
But Sarah also suffered from pulmonary hypertension, diabetes, osteoporosis and severe hearing loss. In May, after discussion with the CHOP transplant team, her parents decided to continue to pursue lung transplant as an option. “Some parents, given this profile, would not list their child for a lung transplant, they would have said, ‘she’s gonna die,'” Caplan said. “When you get a lung transplant, you are on a life of immunosupression, you are accelerating your cancer risk, you’re accelerating your risk of kidney failure. But, if this starts at 40, and you make it to 55, okay,” Caplan offered. A 10-year-old beginning such a regimen would likely experience similar problems by age 25.
In no year between 1990 to 2012 have more than 75 lungs been transplanted to children and adolescents (those 12-19), partly because lung size is a factor in matching donors to recipients. Sarah received a lobe of lung transplant, a rare and risky procedure, because she needed a smaller set of lungs.
Caplan also criticized the news media. “Don’t just get charmed by the PR firm and the people who have the resources to draw them in. There are other people who can’t or won’t. They need a hearing, too,” Caplan said. “Remember in the system, when you are rationing, you always need to ask who doesn’t get this when somebody does.”
Caplan took particular issue with headlines framing the conversation as “Big Government vs. Sarah,” “Sarah vs. a curable disease, or “‘Sarah has been left to die.”
Caplan said, “It’s the dying girl who is at the center- it’s not the system, not who else is waiting. It’s the family trying to fight. The media campaign worked.”
See also: How You Can Help Sarah And Others Like Her by expert Eric Price.