Organ donation in Illinois gets a little help from friends

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by Dianna Douglas

Forty years ago, discussing your plans to donate your organs if you were to become brain dead was considered extremely poor taste.  “People didn’t talk about death and demise in polite company,” said Allen Anderson, MD, associate professor of medicine. He’s director of the advanced heart failure program at the University of Chicago Medicine, and has seen public attitudes about organ donation gradually shift away from macabre fascination and horror in the 1970s, when the concept of brain death was still evolving. “Even after organ donation became more viable, people had a hard time talking about this,” he said.

Not anymore. As of yesterday, Facebook has added an “organ donation” status update page to every account in the U.S. and U.K. These organ donation conversations are public like never before.

Families were once likely to object to someone offering herself up as a donor. Many people feared that the hospital staff wouldn’t do enough to save a dying patient if they already had plans to harvest her organs, or that the surgery to remove the organs would inflict more pain on the patient. For a long time, becoming an organ donor upon death remained a private wish.

“Medicine has progressed and we’ve come to understand brain death. Now, organ donation is not so charged,” Anderson said. In fact, 90% of the public supports organ donation in theory. But when pressed, somewhere between 30-40% of people refuse to turn over the organs of a loved one.

“We always suggest that organ donors discuss their decision with family and loved ones,” said Michael Millis, MD, professor of surgery and section chief for transplant. These conversations serve two purposes: the family knows their wishes, and there is a domino effect when people see others doing something that they once found creepy, or something that they had never considered.

“Organ donation saves lives and eases the suffering of thousands of families,” Millis said.  “Anything that increases awareness of organ donation is helpful.”

Currently, 57% of the people in northern Illinois and northwest Indiana are registered as an organ donor. “We have a good system for getting people to register,” said David Bosch, Gift of Hope communications director. “But we need 90% registered.”

Gift of Hope arranges organ allocation in northern Illinois and northwest Indiana. Bosch still combats persistent myths about organ donation, mostly through educational events in which organ donors and organ recipients share their experiences with the community.

“We’ve had positive media stories, and will sometimes see spikes in visits to our website and donor registrations,” Bosch said. He’s hoping that the Facebook bump will be more permanent. “Most of our outreach is asking each donor to tell two friends, and asking them to tell two more friends. The Facebook attention is powerful because the audience is a billion people.”

There are currently 790 patients on the waitlist for an organ transplant at the University of Chicago Medicine. Many will get organs this year, some will get better without a transplant, and a few of them will die waiting.

The organ shortage is so severe, Anderson says, that even if every person in the country who became brain dead in a hospital gave up their organs, it wouldn’t be enough. “If you commanded every suitable donor to be utilized for donation, we would still have a shortage,” Anderson said. For example, there have only been 1,100 donors in the United States this year. But 73,000 active candidates are waiting. An average of 18 of them die every day.

screen-shot-2012-05-01-at-11502-pm1“There has been a leveling off of cadaveric donors,” Millis said. It’s a result of many factors, including improvements in medical treatments of stroke and brain injury, and the growing use of seatbelts and motorcycle helmets. Millis said that advances in transplant medicine have countered this decrease. “We have been able to expand the criteria of organs that we can accept for transplantation,” Millis said. Millis has found novel ways to transplant the liver of an older child into an infant, for example.

As more people live longer with organ transplants, they become walking advertisements for donation. “When people know someone who gets an organ, it changes the way they look at the process of organ transplant,” Anderson said. His patients, deathly ill when they went through transplant surgery, sometimes live for decades after receiving an organ. “Family members especially become tremendous advocates of becoming organ donors, because they see the benefit.”

Anderson said that almost everyone who encounters a recipient of organ transplant is changed by it. “People sign up when they know someone whose life was saved.”

If the conversation about future organ donation does indeed move to Facebook, it could change the conversation that happens at the bedside of someone who has become brain dead.

“When someone dies, their body belongs to their next of kin. No one can just take your organs,” Anderson said. “All sorts of factors go into whether a family is willing to provide consent in that moment,” Anderson said. Whether a person expressed their wish to donate can influence a family.

To stop families from overruling a dead person’s wishes, Illinois now has a “first-person consent” registry for organ donation. It was established in January 2006 to allow people to make binding decisions about organ donation upon their death. “You don’t need any other consent to donate if you’re registered with the state,” Millis said. While posting an “organ donor” status update on Facebook is not binding with the state, a link sends people over to the Illinois registry if they click the status update on Facebook. “That has to stay in place for the Facebook initiative to make a lasting impact on donation,” Millis said.

The Facebook plan could make the approach easier when the time comes to talk about organ donation in a hospital. “Even a person who didn’t register with the state or put it on their driver’s license can sign up on Facebook,” said Ozzie Rivero, a manager of organ procurement for the University of Chicago Medicine. “It’s not legally binding, but it might help the family come to a decision.”

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