Transplant Surgeons Don't Always Tell Patients About Organ Quality

June 16, 2010— -- A U.K. family is outraged after learning that their now-deceased-daughter received a double lung transplant from a long-time smoker. But it's a situation that occurs all over the world, and fairly often, according to transplant surgeons.

In today's scarce organ market, a smoker's lungs are not off limits, transplant surgeons say. In many cases, the donations have been shown to be lifesavers.

A sufferer of cystic fibrosis, Lyndsey Scott, 28, was on the waiting list for a double lung transplant for 20 months before she got the long-awaited call promising new lungs, but neither she nor her family were warned that the donor had been a smoker for 30 years, according to reports in the U.K. press.

There were complications following the surgery, but Scott pulled through, only to die from pneumonia in July of 2009 -- months after the procedure.

Shocked that they weren't told about the donor's smoking habit, Scott's family is now calling for better doctor-patient communication during the transplant procedure, a request that not all transplant surgeons agree with.

"In general there's been a transition in medicine to give patients more autonomy in decision making," says Dr. Michael Volk, an expert in patient-physician communication regarding transplant issues at the University of Michigan. But, he added, transplant doctors are "still relatively paternalistic."

"We really don't tell patients that much about organ quality, partially because it's difficult for them to gauge risk," Volk says.

"Patients are aghast that we would give them anything but the best, but they don't understand what to us as transplant physicians seems obvious: if you offer patients only the best quality of organ, than you wouldn't transplant many organs, and more people would die on the waiting list."

Given the complex factors going into the risk assessment of a donor organ, "patients have no choice but to trust that the team that is transplanting them is selecting organs for them that are felt [to] have a reasonable chance of a good outcome," says Dr. Jeffrey Punch, chief of the division of transplantation at the University of Michigan.

Don't Ask, Don't Tell for Transplant Patients

It may seem surprising that a transplant surgeon wouldn't disclose the risks of a potential donor organ with the patient, but surgeons have their reasons, transplant experts say.

Given the growing size of the organ waiting list and the grossly insufficient supply of donor organs, "we are pushing the boundaries with marginal donors," says Dr. David Cronin, associate professor of surgery at the Medical College of Wisconsin.

"We use these organs with the expectation that they will work," he says, noting that when patients are offered the organs, the doctor has already weighed the risks and deemed the organ worthy.

"You can't expect transplants to be risk- and death-free," Cronin says, "but the consequence of not enough organs is certain death."

So why not share all the risk information with patients at the time of their decision to undergo surgery?

"Physicians are afraid that [sharing certain information] will scare patients away -- and that's a real concern," says Volk. "Even if the risk of getting HIV from a liver is very, very small, patients will turn down an organ [that] we believe their survival depends upon. Physicians have to make that call."

Scott's case is an example of this type of risk assessment. Though using a smoker's lungs "sounds outrageous to the lay public," says Cronin, research shows that in certain cases, a smoker's lung is suitable, especially considering that 20 to 30 percent of lung transplant patients will die waiting for a lung to become available.

"Smoking alone is not considered a reason to reject the lungs for donation," agrees Dr. Andrew Chang, surgical director of University of Michigan's Lung Transplant Program. "Data suggest[s] that history of smoking alone does not lead to worse outcomes."

And Scott's pneumonia isn't necessarily related to the fact that her donor was a smoker:

Patients with cystic fibrosis who undergo lung transplants "have a very high rate of pneumonia after transplant, that's the primary cause of death after transplant because these patients have many infections before the transplant," says Cronin.

It's a matter of balancing risk and benefit, says Chang. "It probably would be considered equally tragic had the patient died of her cystic fibrosis because of a lack of available donor lungs."

What's more, "many…patients [and their] families will not be able to make an informed decision if they are informed in the early morning hours that a lung is available, but the donor has history of A, B, or C," he says.

This is not to say that Scott and her family shouldn't have been informed of her donor's smoking habits, Chang said, only that it might have been difficult for them to know how to assess the information in the heat of the moment.

Waitlist Education for Patients?

Though patients and their families may not be naturally equipped to gauge how risky is too risky with less-than-ideal donor organs, that doesn't mean that they have to be kept in the dark, says Volk.

It's not that patients can't be informed, he says, it's that they need to be informed early in the process, when they first go on the waiting list, and they need to be informed in a way that they can understand.

Chang agrees: "[It] is of the utmost importance that patients" realize the risks at the beginning of the process, when they have time to digest the information."

While surgeons have to inform patients if there is an above-average risk of disease transmission with an organ, there is currently no standard of care to inform patients about other risks the organ might have, such as whether the donor was a smoker, Volk says.

"I think it is incumbent upon us as physicians to communicate these issues," Volk says, conceding that doctor-patient communication is notoriously problematic.

Research has shown that telling patients about their condition verbally does not work, he says, and that patients don't generally grasp numbers and percentages when being told about their risks.

"In general, doctors do not do a good job of translating medicalese into terms that [patients] can understand," Volk said. "That's why we need education tools to help doctors to better communicate."

Through his research, Volk hopes to figure out how these tools might help doctors and transplant patients alike.

To learn more about how to become an organ donor, visit the U.S. government's official donation website.