Presumed consent: A matter of life and death

Illustration by Forest Byrd

Writing about people, particularly in difficult situations, often teaches us new things. A number of years ago, we wrote about a little girl who suddenly fell ill and needed an organ transplant to survive.

We were so moved by her story, we signed our driver’s license to be sure, when we died, others could use our organs. We figure our body parts are of no use to us after we die. And, since then, we’ve felt a bit of comfort knowing our demise will serve some purpose.

This week, we wrote an obituary for a man we never knew, but wish we had. Terence McCarthy died in his Feura Bush home on Aug. 4. An only child whose parents had died before him, he had no immediate family. His cousin sent us six-and-a-half succinct lines of carefully chosen words about his life.

“Terry is a 10-year lung transplant recipient and was a strong advocate for The Presumed Consent Foundation,” she wrote.

We looked up the foundation online and made a call to Texas, where it is based. We spoke with David Courtney, the foundation’s vice president, who told us about his friend, Terry McCarthy, and about his mission.

“Terry was affected with a genetic disorder, Alpha-1 Antitrypsin Deficiency, that caused him to have a lung disease that required a transplant,” said Courtney, who suffers from the same genetic deficiency himself.

“Terry was in really, really bad shape while waiting for a donor,” said Courtney. “A doctor in Buffalo, where he had the transplant, told him, if the United States used a presumed consent system, he wouldn’t be in such a situation. Terry decided, should he survive, he had to do something about it.”

He started The Presumed Consent Foundation and served as its president. The foundation’s mission is to push for legislation that would require Americans to opt out of donating their organs after death, rather than the current policy where they opt in.

“Terry was a very passionate and caring man in the work he did,” said his friend. “The Presumed Consent Foundation will go on with Terry’s legacy.”

Courtney, who is 51, spent 21 years in the military. He was diagnosed with Chronic Obstruction Pulmonary Disease when he was 40.

“I’m not able to breathe because of this affliction,” he said. “I’ve been on oxygen for 10 years.”

That didn’t stop him from crisscrossing the country with McCarthy to speak to state legislators and Capitol Hill Congressmen about the need to change the organ procurement system in the United States.

“It’s not a sit-in-your recliner, and twiddle-your-thumbs, and wait-for-a transplant approach,” he said. Courtney now has just 15-percent lung capacity and finds it difficult to move. So he uses the telephone and computer to lobby.

The foundation, he said, has made progress. “When this first started, most people asked, ‘What’s presumed consent?’ “Now we have over 7,000 members and we’ve addressed this issue at many levels.”

Courtney said that four states — Texas, California, Oregon, and New York — have legislation ready to file.

Twenty-two countries, said Courtney, have presumed consent policies. According to the North American Transplant Coordinators Association, this includes 21 European countries and Singapore.

In our country, the waiting list for organ transplant is close to 100,000, according to the United Network for Organ Sharing, which maintains the country’s transplant candidate list. UNOS reports that today, right now, 99,206 Americans need organs. They need kidneys and pancreases, livers and intestines, hearts and lungs.

We have the medical technology to save lives  — each day 77 people, on average, receive an organ transplant, according to the United States Department of Health and Human Services — but another 19 on the waiting list die because the organ they need is not available.

A presumed consent system would take education and oversight but the effort would be worth it because it would save lives — 19 every day.

We have the means to make a difference. Right now, each one of us can decide if we want to donate our organs and sign up to do so. But we can go further and push for a policy of presumed consent. This would still allow for choice. But, if it works as it does in Europe, where only 2 percent opt out, it means many more organs would be available.

Terence McCarthy followed through with his conviction to the end. At McCarthy’s request, Courtney said, all of his usable organs and tissue were donated through the New York Center for Donation and Transplant.

For some people, like Courtney, such generosity is a matter of life and death.

“I’m waiting still...for new lungs,” he said.

— Melissa Hale-Spencer