Liver transplant recipients want more power to choose their organs

Last Updated: 2014-07-23

By Rob Goodier

NEW YORK (Reuters Health) - Most recipients of donor livers want to know if the organ may carry higher than normal risks and many want a say in whether they will go through with such a transplant, a new survey of Dutch patients has found.

"At the time of organ offer for transplantation, donor-related risks such as disease transmission and graft failure are weighed against the patient's risk of remaining on the waiting list," Dr. Robert Porte from University Medical Center Groningen in the Netherlands and colleagues write in their report, online May 24 in Liver Transplantation.

The researchers surveyed 179 liver transplant recipients and 40 transplant candidates. They found that nearly 75% would like to be informed if there are elevated risks of infectious disease or malignant tumors, and nearly 60% wound want to know if there is an increased risk of bile duct strictures.

More than 53% of the patients said they would like to be informed of the risks when the organ is offered. Of those, nearly all of them wound want to be involved in the decision to accept the organ, or to make the decision entirely on their own.

The degree of information and choice that transplant candidates have varies among European countries and the US, the researchers write.

In the US, patients sign consent forms at different stages during the process, but the law does not require medical centers to obtain patients' consent for extended-criteria donors whose organs might carry higher risks.

Medical centers do give potential recipients information about higher-risk donors, however, and they inform the patients throughout the process, Dr. Patricia Sheiner, director of the liver transplantation program at Hartford Hospital in Connecticut, who was not involved in the survey, told Reuters Health by email.

"My experience is that only a few turn down the organ and the sicker they are and the more faith they have in their transplant team, the more likely they are to accept an organ," Dr. Sheiner said.

Even with risk information, many patients still defer the decision to the transplant team, said Dr. David Foley, a liver transplantation surgeon and associate professor of surgery at the University of Wisconsin-Madison.

But maybe that can change.

"I believe that surgeons and centers would be in favor of having patients play a more active role. Surgeons do not want to transplant an organ to a patient who does not want to receive that specific organ. If they did have a more active role, then it is possible that more organs would be turned down and the center would have to identify another recipient. This would not be a significant problem for the center or the organ procurement organization," Dr. Foley said.

Whatever the final decisions on information and consent, medical centers should standardize their operations across the board so that patients get equal treatment wherever they go, Dr. Porte and his team write.

Dr. Porte could not be reached for comment.

SOURCE: http://bit.ly/UohiId

Liver Transpl 2014.