CLEVELAND -- While surveys indicate that the majority of Americans believe organ donation is good, when confronted with the decision, less than half of families asked will not donate a loved one's organs for transplantation.
A new study from Case Western Reserve University's School of Medicine, published in the July 4 issue of the Journal of the American Medical Association, finds that prior knowledge of the donation process, how a family is asked, and demographics play important roles in the decision to donate.
Laura Siminoff, a CWRU professor of medicine, and colleagues studied the factors associated with families' willingness to donate relatives' organs. They analyzed data of 11,000 patient records from 1994-99 at nine trauma hospitals in Northeast Ohio and Southwest Pennsylvania. Of 420 donor-eligible cases, 238 led to organ donation and 182 did not.
From interviews with the families involved with these case, the researchers found prior knowledge of their relatives' wishes was highly influential. "People who had some sort of discussion with their family members ahead of time were much more likely to donate," says Siminoff. "It may have been a large discussion, such as 'I checked my license and I want to be a donor,' or it could have been something more casual in which somebody said, 'Listen to this news report about somebody who needs an organ. If I were ever in a situation where I could donate, I'd like to do it.' We found that having those discussions is very, very important," Siminoff says.
The researchers also found that physicians and nurses were often incorrect about assessing families' wishes, and that involving a representative from an organ procurement organization early in the process was highly effective in the donation process.
"We were surprised at how poorly health care providers did in realizing what families wanted to do," Siminoff says. "When they thought the families didn't want to donate, but the families really did, the health care providers didn't call in the organ procurement organizations. When that happens, people are less likely to donate. The organ procurement people were more effective in asking for organs."
The study also found families were concerned about whether there was a cost involved with organ donation (there is not), whether they could still have an open casket funeral ( they could, since no disfigurement is involved with organ donation), and whether they could tailor the donations (they can designate which organs to take). "People feel really strongly about the heart," says Siminoff. "Many said, 'I can donate kidneys, I can donate the liver, but I just can't bring myself to donate the heart.' People can choose which organs to give."
Families of white, younger, and male patients were more willing to donate, and consent was higher when the patient's death was trauma related. Siminoff says that organ transplantation is one of the modern medicine's success stories, going from once being experimental to now being the treatment of choice for organ failure.
That success has greatly lengthened waiting lists for organs. About 70,000 Americans are on the waiting list, and the number rises annually. Unfortunately, the number of organ donors is about 6,000, out of a potential pool of 12,000 to 15,000 organ donors.
While less than 50 percent of eligible families donate now, and while 20 percent of families will never donate for a variety of reasons, Siminoff believes the number of families who would donate can increase dramatically if improvements were made in the public's education of the donation process and the method in which requests are made.
"We found that people don't know much about the process of donating organs, so they have many questions about what it means if they donate a loved one's organs. It is really important that someone who is an expert at making these requests comes in at an early period and starts to build rapport with the family and slowly starts talking to the family about the option of donation and about what it entails."
"People should know that their families will be the ones who will have the last word on donations, so it's very important to talk to family members about it," says Siminoff.
Other authors on the study are Nahida Gordon and Joan Hewlett of CWRU and Robert Arnold of the University of Pittsburgh. This project was funded by a grant from the Agency for Healthcare Research and Quality.