'Dead Donor Rule' Still Lives in New Organ Transplant Policies

"Causing death to maximize organ donation is violating all ethical standards governing organ procurement," said Arthur Caplan, the chair of medical ethics at the University of Pennsylvania. "Fear of this may cause people to revoke or not provide consent, and that jeopardizes thousands of lives."

The overarching "dead donor rule" is still sacrosanct, according to David Steinberg of Lahey Clinic Medical Center, who is chairman of the ethics committee at Medical Center in Burlington, Mass.

"It is still taboo to take an organ from someone who isn't already dead, but the longer you wait after death, the less viable the organs are," he said. "The question is: When is the earliest moment that you can call them dead?"

"Cardiac death determination is not scandalous," he said, "but there are philosophical problems and some social values to consider. A person is dying, and as soon as they are declared dead, they are rushed into the operating room. … It's hard for families to grieve."

Doctors Don't 'Pull the Plug'

Organ donation policies are designed to honor the wishes of patients, provide comfort and dignity to the donor, and offer families time to say goodbye to a loved one, according to Beth Israel's Hanto. Death care and transplantation procedures are always separate, he said.

Brain death donation, which is highly controlled, is still the preferred method for lung and heart transplants.

But cardiac death donation was a new option for families like the Dillons, who knew their son would become brain dead over time and didn't want to prolong the inevitable.

"Policies need to be enforced with how and where we do them," Hanto said. "The families are onboard with this. None of us would pull the plug out from under their nose."

Such was the case with Sue McVey Dillon, who now serves on the faculty of a federal organ donor collaborative and urges other families to choose DCD.

"People always assume that once a patient dies, they can say they want to donate, but, in fact, that is too late," she said. "Donation after cardiac death cannot happen until the family asks for it. I cannot imagine that there are hospitals that do not present this as an option. Put the shoe on the other foot if your child needed a transplant. There's nothing you wouldn't do for them."

Sometimes Dillon said she saw her son in Felix, who had an "ornery" personality and made her laugh. Sadly, Felix died just last year -- nearly 11 years after Michael's death.

"I miss Santos horribly," said Dillon, who has no regrets about donating her son's liver.

"Michael was going to die, and we had already drawn the line when we decided to remove him from life support," Dillon said. "It made the decision easy for us, because he could go on and help someone else."

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