By Rick Weiss
When a gas pipe exploded at an Arlington construction site on Nov. 4, Juan Mancia took the brunt of the blast. The 20-year-old's heart stopped while he was being helicoptered to Washington Hospital Center, where he was declared dead upon arrival at 11:36 that morning.
At that moment, Mancia crossed the line from patient to potential organ donor. And at that moment, because of an unusual and controversial District law, surgeons converged on Mancia a man who had never consented to organ donation and started to prepare his kidneys for transplantation.
Mancia had never signed an organ donor card, and his family is opposed to donation. "God sent him with everything," his wife said a few days after his death, "and he should return with everything."
But Mancia's wife was not at the hospital to say so when he died. So as expressly allowed by the 1996 District law the only such law in use in the nation doctors made two deep cuts in Mancia's abdomen and a larger cut in his groin. Then they spent more than an hour conducting surgery on the man's body and flushing ice-cold preservatives through his kidneys, in the hope that family permission would eventually be forthcoming to transplant those organs to someone else.
Preemptive and invasive organ preservation without family consent is just one of several increasingly aggressive organ procurement strategies coming into use in this country as recipient waiting lists grow to record lengths.
It is part of a trend that some experts say is edging beyond the bounds of morally appropriate medicine and is one of many bioethical dilemmas emerging today as technology in this case, the ability to retrieve and transplant organs advances faster than society's comfort with the science.
Supporters of the Washington law note that it may take hours to contact relatives for permission to retrieve organs, and if doctors don't intervene quickly to preserve those organs they may lose the precious opportunity to do so. The preemptive surgery gives family members extra time to learn of the death, cope with their loss and still opt for donation.
"It lets us put the decision about donation in the hands of the family," said Bill Ritchie, head of decedent services at Washington Hospital Center. "Some families are going to say no, but a lot say yes and consequently we've enhanced the lives of a lot of people."
Critics, however, call it mutilation of the dead without family consent. And they say similarly disturbing strategies are emerging at other locations.
For example, at least 19 of the nation's 64 organ procurement organizations now have protocols for obtaining organs from donors who do not meet the criteria for "brain death." The new policies allow doctors to take organs from people who have been declared dead not by virtue of their brain having stopped functioning but because their heart has stopped beating for as little as two minutes an interval so short that some wonder whether these donors may still have some mental activity or even the potential to spontaneously revive.
In another effort to increase donation rates, at least one major medical center now infuses potential donors with a cocktail of organ-preserving drugs even before these patients die drugs that some experts claim have at least a small chance of hastening the donors' death.
Ethicists first started questioning such procedures about five years ago, when the University of Pittsburgh began retrieving organs from patients who had not been declared brain dead. Concern has increased lately as additional centers have followed that lead, and as some states have begun considering legislation like Washington's that would legalize invasive organ preservation without family consent.
"This field has reached a stage in which the ardor about the goodness of organ transplantation and the zeal in pursuing that goal is causing some very disturbing things to happen," said Reneģe C. Fox, a medical sociologist at the University of Pennsylvania who has written extensively about transplantation. Organ donation is a "magnificent" gesture, Fox said. "But you can have this creeping trend toward taking care of the organs instead of the person."
The Institute of Medicine (IOM), the health policy arm of the National Academy of Sciences, is scheduled next week to release a report defining minimum scientific and ethical standards for these newly emerging methods of organ procurement. As part of that mission, the report also will address a lingering uncertainty that surrounds the definition of death itself an uncertainty that has resulted in a surprising lack of agreement among organ procurement groups as to how quickly they may act to remove a person's organs.
Experts hope that the influential IOM's pronouncements will help rein in centers whose practices are pushing against the bounds of acceptability, and assure overly conservative transplant centers that they can be more aggressive without crossing key legal or ethical lines.
"The dominant issue here is we have a desperate problem of an organ shortage and we have patients that are dead by anyone's criteria whose organs can be useful," said Lawrence Hunsicker, director of transplantation at the University of Iowa College of Medicine and president of the United Network for Organ Sharing, which holds the federal contract for coordinating organ transplants in this country. "The IOM study allows the issue to be raised in a deliberative, cool way."
A Growing Demand
The obvious solution is to increase donation rates, but that has proven difficult. Donation in this country requires prior consent of the deceased or a family member, and many people harbor a reluctance to make that decision.
Donation is also hampered by a bioethical conundrum: It must occur very soon after the donor stops breathing to ensure that the organs are still vital. But moving too quickly risks awakening people's archetypal fears of having their organs snatched while they are still alive. Those fears have deep historical and psychological roots and constantly threaten the "gift-giving" system of donation in this country, which relies on people's trust that their generosity will not be taken advantage of.
"If the issues are not handled well, then it will be a disaster," said John Robertson, a professor of law and bioethics at the University of Texas School of Law in Austin and a member of the IOM panel. An overly zealous retrieval effort might even result in fewer donations overall, he said, if it prompts a backlash of mistrust.
Until recently, doctors took a very conservative approach to donation, relying almost exclusively on people who had been declared dead on neurological grounds in lay parlance, "brain dead." These people have suffered an irreversible loss of brain function, but their organs can be maintained for long periods with the use of a respirator. Under standard transplantation procedures today, organs are removed from these dead donors while they are still on the respirator and their hearts are still beating, ensuring that the organs remain healthy until the moment of removal.
But there is another potentially large population of donors: those who have been declared dead not because their brains have stopped working but because their hearts have stopped. That was the primary definition of death before 1968, when doctors in this country created the "brain death" alternative. It remains a legal definition of death today, but until recently was of little use in the transplant community.
That's because most cases of death by heart failure involve an accident victim whose heart has stopped in an emergency situation, when transplant surgeons cannot respond in time to recover vital organs. Other cases involve hospital patients whose brains are still functioning but who are so critically ill they have opted (or their families have opted) to have life support removed, which usually leads to cardiac arrest within minutes. In that case, transplant surgeons can stand by and retrieve organs immediately after the heart stops. But until recently it was considered unseemly to have surgeons hovering about, waiting for the last heartbeat as family members stand at the bedside saying farewell.
In the last few years, however, transplant doctors have transcended such logistical complications and qualms, and have begun to see these "non-heartbeating donors" as a possible solution to the organ shortage. Fledgling programs specializing in these methods now provide about 4 percent of all organ donations most of them kidneys, which are relatively tolerant of the brief lack of oxygen that occurs with these donations.
Some experts estimate that total donations could increase by 20 percent to 50 percent or more by tapping such patients. In one recent study, researchers calculated that if organs were harvested efficiently from this new pool of patients then donations could match demand by the year 2007.
Inspired by such numbers, Washington Hospital Center in 1994 created a Rapid Organ Recovery program in which surgeons were on standby to retrieve organs from emergency patients whose hearts stopped beating. They quickly ran into a problem, though: In most instances, even though the doctors were ready, family members could not be found in time to give consent.
So in 1995, the hospital helped organize a series of public meetings aimed at persuading the city council to amend the District law governing organ donation. The change would allow surgeons to conduct organ-preserving surgery on the deceased without family consent.
A few people, including the District's chief medical examiner, opposed the plan, saying it would, in effect, legalize desecration of the dead. But many others told the council they favored the change. The amendment passed and went into effect 18 months ago.
The goal was to keep the organs in suspended animation in the hope that a family member would arrive and give consent to have them removed. If consent were denied, doctors would remove the tubes and sew up the surgical wounds, which is ultimately what happened in Mancia's case.
Jimmy Light, director of transplantation services at Washington Hospital Center, believes such procedures are justifiable. Indeed, he said, it is unethical not to preserve organs when possible, given the emotional benefits that survivors can derive from donation.
"We felt that every family in this kind of crisis should have this option available to them," Light said. "If it's not offered, it's equivalent to denying them appropriate care in the sense of bereavement counseling."
Terry Heinz is one of many who share that sentiment. In August 1996, the Wisconsin woman's 17-year-old son, Josh, became an organ donor after his heart stopped from an apparent heart attack. In a moving, open letter she composed earlier this year, Heinz wrote of the comfort she has gained knowing that Josh's organs are helping others.
"The families who have received Josh's organs are doing great," she wrote, saying that she is in touch with them. "If you have never been there," she continued, addressing critics of organ retrieval programs, "do not open your mouth until you know the facts."
Recipients also offer emotional proof of the benefits of donation. District resident Johnnie Cross, 58, a retired Pentagon employee, was slowly succumbing to kidney failure when a nurse called in October 1994 to say a kidney had been obtained through the Washington Hospital Center's new rapid organ recovery program.
The match was good, the nurse said. Did he want it?
"I said, 'Yeah, sure I wanted it,'" Cross recalled last week. The father of two took a cab to the hospital, where surgeons were rescuing the kidney from a young accident victim. That day his life changed forever.
"Oh man, you just don't know what a difference it makes," Cross said. "If you'd seen me back then . . . you'd see the difference. I look younger, I feel younger, and I act younger."
Ritchie, the hospital's chief of decedent affairs, said Cross was lucky; in those days, family members often refused to donate. But since District doctors won the right to preserve organs from accident victims before the family arrived, almost every relative has agreed to donate once they learned that the surgery had already been done.
That's evidence of the program's success, Ritchie said, but others see a problem with those results.
"You have a procedure that most people would refuse, but then, if you do the procedure, most people accept it and decide to donate," said Michael A. DeVita, director of the University of Pittsburgh Medical Center's surgical intensive care unit. "To us that raises a very difficult ethical question," namely whether the organ-preserving surgery may be unduly influencing the decision to donate, which would break a cardinal rule of voluntary donation.
Some also take issue with transplant advocates' claim that organ preservation protects people's "right" to donate, as though that right were in the Constitution. Can mandatory donation be far behind? critics ask.
"When people refuse to donate, depriving individuals of organs that could save their lives, maybe we should consider that a homicidal act," quipped Roger W. Evans, head of the section of health services evaluation at the Mayo Clinic in Rochester, Minn.
Many say they are shocked that Washington allows organ-preserving surgery without consent, especially because so many patients affected by the law had no say in the decision. Mancia, for example, was a resident of Virginia.
"I am absolutely amazed that this law passed," said Robertson, the Texas ethicist. He said physicians in Florida the only other jurisdiction to pass a law like the District's have never preserved organs without consent even though they legally can, because of fears that it would offend public sensibilities. A similar law in Virginia, passed with a different intent but that some believe might allow organ preservation without consent, also has never been invoked.
Improving the Odds
But unlike anywhere else in the country, the Wisconsin doctors inject two drugs into the still living donor heparin and regitine, which increase blood flow to the organs about to be donated and improve the odds of a successful transplant. Other programs use heparin but not regitine, because regitine can cause a drop in blood pressure that some experts suspect may hasten a donor's death.
"Regitine reliably drops blood pressure," said Pittsburgh's DeVita. "We believe it does hasten death and we didn't want to even appear to be hastening death with the goal of procuring organs."
Anthony D'Allesandro, chief of transplantation at Wisconsin, said studies at his hospital have shown that regitine causes at most a modest, temporary and harmless drop in blood pressure.
"It clearly does not benefit the donor, but our belief is that it doesn't harm the donor either," D'Allesandro said. "And it improves the ability to transplant organs, which is what they wanted." He said the hospital's use of non-heartbeating donors has boosted the number of donations by almost 10 percent.
Even without the use of regitine or preservatives like those used in Washington, organ donation from non-heartbeating donors raises an extremely difficult and ethically vexing question: Once life support is removed and the heart finally stops, how long must one wait before the patient can be declared dead, so surgeons can start their rapid organ recovery?
It turns out that, unlike the definition of brain death, there are no strict criteria for this definition of death. A declaration of death by heart failure simply demands that the heart be "irreversibly" stopped. But no one knows how long a heart must be still before it is certain that it will not spontaneously restart.
Based on a few old studies suggesting that hearts never restart on their own after two minutes, officials at the University of Pittsburgh have decided they will wait two minutes before starting organ removal. But that struck several IOM panelists as too close for comfort when they discussed it at a meeting in July. Even if the heart is dead, they wondered aloud, might some brain activity still be going on? Pittsburgh officials replied that at least they have a written policy. Other institutions leave it up to the attending doctor.
New technology has made the definition of death more difficult than ever, said Robert M. Arnold of the University of Pittsburgh's center for medical ethics. Doctors used to put a mirror up to the nose or mouth to see evidence of the breath, Arnold said. Later they learned how to listen to the heart, measure blood pressure, and conduct sensitive tests for brain activity to detect the most subtle signs of life.
"How much is enough?" he asked. And is there anything wrong with going back to an earlier definition of death if it helps provide more organs?
"There is a longstanding cultural discomfort that makes it very important to be really sure that these people are dead," Arnold said. "It would be best in my view to have a national consensus on this, so there are not ongoing sputtering ethical fires that have the effect of decreasing public trust."
© Copyright 1997 The Washington Post Company