Seeking the Gift of Life Comes Up Against Social Taboos
One person can donate a legacy that saves many people in need
It’s an implanted fact: According to the American Transplant Foundation, 20 patients in the United States die every day due to lack of available organs for transplant. Up to eight lives can be saved by a single deceased donor.
This is not just an American phenomenon.
“In the Philippines, the organ shortage is probably much more pronounced,” said Dr. Narciso Tapia. A medical educator, he teaches at the Department of Microbiology and Parasitology of the Cebu Institute of Medicine.
“Many with end-stage renal disease, for example, need a kidney transplant for continued survival,” he said. “But the number of living and deceased kidney donors is very low.”
As Tapia explained, various countries may employ two strategies to obtain consent from would-be organ donors: Opt-in or opt-out.
“Opt-in means only those who have given explicit consent are donors,” he said.
“Opt-out, on the other hand, means anyone who has not refused consent to donate is a donor,” Tapia said. “In opt-out, it is assumed that individuals intend to donate their organs to medical use once they die.”
Another issue with donations is the selling of organs.
“Even in Facebook, selling of organs has been reported in several instances in various countries like in the United Kingdom and Indonesia, to mention a few,” Tapia said. “Local anecdotal reports of persons trying to sell organs by penetrating Facebook groups of patients is also a concern.”
This led Tapia and others to consider strategies to promote organ donation.
Healthcare promotions start with education, which helps tamp down emotion and politics. If religious issues are a concern, clergy need to be informed about the issue so they can explain to their congregations.
Sandra Woods, a specialist in bioethics, healthcare, pain, patients’ rights, privacy and veterans’ health, has a special perspective.
“There’s often resistance to the idea of not ‘letting nature take its course,’” she said. “Family members feel they’re ‘pulling the plug’ or ending life ‘early.’ Public education should focus on the concept of brain death and what’s culturally appropriate.
“I work with a group that encourages people to talk about their end-of-life wishes, while still healthy,” Woods said. “We need to break taboo so loved ones will know what they would want at the end. Always talk about organ donation.”
In this way, possible donations are part of the process, not the objective.
“Discussing end-of-life wishes gives people a way to tell family if they’d want a do-not-resuscitate or no-code order,” Woods said. “We need to be able to donate organs in best possible condition and not hasten death. It’s easier to talk about that way, with the goal of organ donation in mind.”
Dr. Chuck Webster, host of #HealthSystemsChat on Twitter and a social media ambassador, looked at improving the size and efficiency of organ-matching “markets.”
“For example, the 2012 Nobel Prize for Economics went to an engineer trained in operations research,” he said. “This was for improving and applying algorithms matching available organs to compatible patients.
“That’s interesting and ironic because markets are usually driven by price, but it’s against law to sell organs,” Webster said. “We need to focus on reducing financial disincentives: cost of finding a match, cost of transportation and lodging, and opportunity costs such as time off from work to convalesce.”
Opt-out potentially broadens the organ donation pool. Education again comes into play. People need to know everyone has a right to opt out, whether it be stated on a driver’s license or otherwise, that will be known in the rush of an emergency.
“Opt-out consent is theoretically a good idea, but the concept assumes that the entire population is already well-informed about what organ donation is, and what it means at end of life,” Woods said. “I don’t think most countries are there yet. That also doesn’t account for family wishes.
“Opt-in and opt-out are different types of approaches to consent,” she said. “It’s important to focus on how to get to ‘informed consent.’”
Others must understand
Opt-out makes the act of donation more “mainstream” because donation is the default option.
“Exactly,” Woods said. “That helps reduce taboo in talking about end of life. The only way to ‘go’ the way you’d prefer is if others know and understand your own priorities.
“This includes organ donation,” she said. “It’s the chance to save another life at the end of yours.”
As with many controversial issues, words matter.
“The perceived poor reception for donating is because of the term ‘mandatory’ and the lack of information regarding opt-out,” Tapia said. “Some people thought everyone is forced, and there is no other option.
“That is why it is difficult to find true altruistic living donors,” he said.
That leads to the problem of selling of organs, especially through social media.
Organ selling stems from desperation amid shortages. Education about the benefits of donation could expand the supply of potential donors while shutting down the black market.
“It’s as difficult to address — educate against — and stop the sale of organs on the black market as it is to try to stop slavery, human trafficking, and child pornography,” Woods said. “But we have to try.
“To fight the sale of organs on the black market, maybe we should talk about risks for the organ purchaser,” she said. “This includes the risks of incorrect handling of a ‘bought’ organ. There also are the risks of being caught. The concept of fairness probably isn’t an important factor for someone considering buying an organ.”
A related transaction is selling blood, which took Woods aback.
“In Canada, it’s largely viewed as unethical to pay for giving blood,” she said. “There is a bioethics concern about distributive justice.
“That more people living in poverty would give blood — and society would come to see this as an accepted ‘role’ of less fortunate people — raises great risks,” Woods said.
Tapia reiterated the disquieting prospect of social media’s role in illicit transplants.
“Selling organs appears to be increasingly done through Facebook,” he said. “Some are trying to penetrate patient support groups.”
About The Author
Jim Katzaman is a manager at Largo Financial Services and worked in public affairs for the Air Force and federal government. You can connect with him on Twitter, Facebook and LinkedIn.
Originally published at www.datadriveninvestor.com on February 9, 2019.
