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

BySusan Donaldson James
February 06, 2009, 8:35 PM

March 21, 2007 — -- In June 1995, Sue McVey Dillon got the phone call every mother dreads: Her 14-year-old son Michael was being rushed into surgery for brain trauma after he plunged to the ground when a makeshift rope swing snapped.

The Chester County, Pa., boy who loved rock climbing, girls, track and fishing was "one of those kids who went to bed at night recharging for next day," Dillon said. "He was into everything."

With a body temperature of 108 and little brain activity, Michael was put on ice -- and life support. "As a mother, you panic," she said. "I knew it wasn't good at all."

Learning the brain damage was irreversible, the family spent an agonizing weekend asking "a million questions" and consulting a trusted family doctor. Ultimately, the family decided to withdraw Michael from life support and asked about organ donation.

Michael was the first patient in Philadelphia's Gift of Life program to donate an organ after cardiac death -- even though he was not yet brain dead. The ventilator was pulled, his heart stopped, and several minutes after death, Michael's liver, two kidneys and two corneas were removed to help five people.

Organ donation by cardiac death -- known as DCD -- is not new, but it is gaining momentum nationwide at a time when a record number of adults and children are waiting for kidney and liver transplants.

DCD procedures have grown to 605 in 2006, up from 268 in 2003, according to the United Network for Organ Sharing (UNOS), which oversees organ procurement through 58 regional centers.

For the last 30 years, brain death has been used to determine when a life ends and organ donation could begin. But today, hospitals are using cardiac death as a marker so they can meet a growing demand for organs.

The National Academy of Sciences' Institute of Medicine has ruled DCD is ethical as long as donor care and transplantation are separate and surgeons wait at least five minutes after the heart stops. Now UNOS and federal health officials are recommending that all hospitals decide whether to allow DCD.

This shift in protocol could be a boon to the 95,000 people waiting for transplants, but it has alarmed medical ethicists who say a hospital's first priority should be end-of-life care and not organ retrieval.

"There are split loyalties, and we want to make sure that the donor's interest is put front and center," said Joan McGregor, director of the bioethics program at Arizona State University. "Doctors caring for dying patients shouldn't push the clock."

With only 13,000 brain deaths a year for medical conditions like gunshot wounds, aneurysms and cardiac arrests, the new DCD protocol could increase the annual number of potential donors by 15,000 to 20,000, said UNOS spokesman Joel Newman.

The need for organs -- particularly kidneys and pancreases -- has been accelerated by an epidemic in liver cancer related to HIV and Hepatitis C and to diabetes and hypertension, according to Douglas Hanto, a transplant surgeon at Beth Israel Deaconess Medical Center in Boston.

In 1996, about 18,000 patients were added to transplant wait lists. Just last year, about 30,000 were added, Hanto said.

With the rising demand, extra donors from DCD protocols would be a great help to patients who need organs. Although 85 percent of all Americans support organ donation, there were only about 8,000 who donated organs after death last year, Newman said.

"Organ donation is an issue of public trust," Newman said. "When life begins and when life ends are vital questions. But there is another element -- this is a procedure that yields benefit to someone else."

In DCD situations, the approach usually involves patients like Michael, who have suffered irreversible brain damage from an accident or a stroke. After family members have made the difficult decision to discontinue a ventilator or other life-sustaining treatment, organ-bank representatives talk to them about donation.

The patient is allowed to die naturally. With the consent of family members, anti-blood-clotting drugs are administered to prevent organ demise, and pain medication is never withheld, doctors say.

The amount of time doctors wait to begin retrieving organs is critical because the viability of the organs depends largely on the length of time it takes a patient to die. After 30 minutes a liver is unusable; a kidney can survive only an hour.

Even though the number of DCD cases is small, an ethical debate centers on the wait time after a donor's heart has stopped beating and on the quality of care the patient is given on his or her deathbed.

There is even some disagreement on when doctors can conclusively determine when a patient is dead.

The heart can auto-resuscitate after withdrawal from life support, and some doctors have reported a so-called "Lazarus Syndrome" in which the heart can restart after stopping for as long as 10 minutes, according to medical ethicist McGregor.

Although these patients ultimately die, critics wonder whether the patients, who still have some brain activity, can still feel pain.

McGregor said that hospitals needed to properly inform families of these procedures and that all emphasis should be on "palliative care" for the donor to avoid any unnecessary pain and trauma.

Sue McVey Dillon said the organ donation team and Michael's doctors had guided her and her family compassionately "every step of the way."

After Michael's death, Dillon was introduced to the recipient of his liver: 39-year-old Santos Felix, who had been ravaged by years of Hepatitis C acquired from childhood tattoos.

"The relationship was healing for our family," said Dillon, who became friends with Felix, watching his volleyball games and even traveling to Puerto Rico to meet his family.

"This has really helped families who have lost a loved one," said Howard Nathan, president of Philadelphia's Gift of Life program, which organized Michael's transplant.

"It gives families an option when all else is lost," he said. "All of these organs would have been buried if we had not incorporated DCD into the end-of-life care for families. And that would have been a real tragedy."

But not all donations have storybook endings. In a starkly different case in San Luis Obispo, Calif., a transplant surgeon may be criminally charged with giving excessive doses of pain medication to hasten the death of 26-year-old donor Ruben Navarro.

Navarro's organs could never be transplanted because he did not die until several hours after being removed from life support. The coroner ruled that he died of natural causes, but ethicists question why the surgeon was involved in the patient's end-of-life care -- a practice banned in hospitals.

"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."

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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