The Waiting Game: Nurses strive to educate families about new organ allocation policies

The waiting game
Nurses strive to educate families about new organ allocation policies

By Cathryn Domrose
July 3, 2000

About 70,000 people are awaiting organ transplants in the United States – about half need kidneys; another 15,500 need livers.

Illustration: Artville


	You've read the article. Now tell us what you think. Related sites United Network for Organ Sharing US Department of Health and Human Services American Association of Critical-Care Nurses New regulations for liver patients The United Network for Organ Sharing announced a new policy to give preference to liver patients younger than 18 over adult patients with similar medical need when a donated liver came from a patient who also was younger than 18. The new policy was adopted by the UNOS board of directors June 15-16 in Richmond, Va. It should reduce waiting and increase survival among pediatric liver patients without "substantially affecting the mortality or waiting time" of adults who need a liver transplant, according to a statement issued by UNOS. ~Cathryn Domrose

When Paulita Narag, RN, a critical care registered nurse, is trying to save an organ for transplant, she doesn’t think about where the organ is going or who is overseeing the distribution of organs in the country. She just wants someone who needs it to have it.

"I’m working very hard to recover the organ; I’ve worked very hard to talk to the family and if it’s not going to be used, I’d be very, very upset," said Narag, the organ and tissue liaison coordinator at Hendrick Health System in Abilene, Texas.

A continuing debate between the federal Department of Health and Human Services and the United Network for Organ Sharing (UNOS) over who should control the distribution of organs has little direct effect on critical care nurses who work with organ donor patients and their families, said Barbara Gill, MN, RN, a clinical nurse specialist in Abilene. But if potential donors and families are confused about the way organs are allocated or perceive unfairness in the system, they may be more reluctant to donate, she said.

Most critical care nurses support organ donation and transplantation, said Gill, who served on an Institute of Medicine committee to study the issue. "They don’t care where the organs go," she said. "They just want to assure that the transplant process goes as smoothly as possible."

About 70,000 people are awaiting organ transplants, according to UNOS. More than half are waiting for kidneys. Another 15,500 are waiting for livers.

Since the mid-1980s, organ procurement and distribution in the United States has been overseen by UNOS, a private nonprofit organization that contracts with HHS. To decide which patients receive organs, UNOS established a complex formula based on how sick patients were and how close they lived to the area where the donated organ was available.

In 1998, the federal government decided organs were not being distributed equally, especially across state lines, and ordered that organs be given to the sickest patients, regardless of where they lived. The government also wanted a broader role for the HHS and its secretary to ensure that organs were allocated fairly. Congress suspended the order, called the Final Rule, after states complained. After much debate and study, an amended version of the Final Rule took effect in March.

"The HHS does not seek to interfere in the practice of medicine, but rather to assume proper responsibility for ensuring that the transplantation system as a whole operates in the public interest," HHS Secretary Donna Shalala said in a press statement in October.

UNOS wants to give less critical patients a chance to receive an organ transplant before they become so ill that their chance of survival decreases, agency spokesman Bob Spieldenner said. Using a geographic system was one way to do that, he said.

"The problem is there are not enough organs to go around," Spieldenner said. "No matter how we change our policies, patients are still going to die and [the organ distribution] is going to help one group of patients and hurt another group of patients."

UNOS is re-examining its policies on how it determines what makes a patient medically urgent, Spieldenner said. The agency recently submitted a new policy on liver allocations to the HHS, which states that a liver will go first to a patient in a regional area who is sickest and most likely to survive – someone with mushroom poisoning, for instance – rather than to someone whose condition has deteriorated from a chronic liver illness, Spieldenner said. If no critical patients are available in the regional area, the liver will go to the sickest person on the list in a local area, he said.

The greatest effect new policies will have on critical care nurses will probably be the need for training to familiarize them with new regulations and reporting procedures, said Janice Weber, MSN, RN, public policy specialist for the American Association of Critical-Care Nurses in Aliso Viejo.

She pointed to a study that showed an informed, involved staff seemed to significantly increase levels of organ donation.

Sometimes organ procurement teams and critical care nurses face families who don’t understand the process or believe it is unfair. Narag said one family she was working with was ready to donate until another family member intervened, saying, "I don’t agree with organ donation because it’s just going to go to rich people."

No matter how regulations are written or who has control over the process, organ procurement organizations, critical care nurses and others who work with donor patients and their families must make sure people understand the process is fair to all, Gill said.

"People are making a very meaningful gift," she said. "They want to make sure their gift is going to make an appropriate difference for someone whose life is at risk."