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FEATURES

Rest in Pieces

A Monologue: How to Lose Your Body Parts Before You’re Definitely Dead

by Les Sillars

Listen, everything will be OK. You’re in the ambulance now. You’re pretty banged up (that’s one nasty head injury) but you’re nearly stabilized, and we’re heading to the hospital. Hang in there. I doubt you can hear me—let’s see, weak pulse, unconscious, pupils unresponsive—no, probably not. I’ll keep talking anyway. I’m a medical technician.

Let’s see your driver’s license . . . you’re an eligible organ donor. Good for you! Tens of thousands of people’s lives are extended every year because of organ donation, but over 6,000 still die waiting for one. They say organ donation is the gift of life.

I know, some people get a little queasy about imagining their corneas in somebody else’s head, or having their chests cut and spread open and a surgeon slicing out their heart or pancreas. Just the thought is pretty creepy.

But don’t worry. When we take your organs—er, I mean if—there’s an excellent chance you’ll be dead. Well, quite probably. It depends. This is not China in 2008, you know, where transplant teams were ready and waiting at the executions of political prisoners. This is the United States of America, in the year 2029, and we’ve got ethics. Darn good ones.

Still, maybe I should explain, even if you are unconscious. We’ve got a bit of a ride to the hospital. I’ll start at the beginning.

On the Road

The first successful human corneal transplant was in 1905. The first successful transplant from a living donor, a kidney, wasn’t until 1954, and the first from a deceased donor, again a kidney, not until 1962. The first successful heart transplant was in 1967. The major medical problem then, and still is, that the recipient’s body often rejects the new organ.

The development of anti-rejection drugs and other medical techniques in the 1960s and 1970s led to rising success rates and slowly increasing demand. But there was a problem: Where would the additional organs come from? Most organs deteriorate quickly, sometimes in just minutes, after the flow of blood and oxygen ceases. In most accidental deaths, few organs are usable by the time transplant surgeons can get to the body. But ventilators, which were developed around the same time as transplant technology, can keep the hearts and lungs of patients with severe brain damage pumping and breathing until the organs can be “harvested”— I mean, “retrieved.”

The obvious question, of course, was, How do you know when the patient on the ventilator is dead so you can take his organs? It used to be fairly easy to diagnose death: the person was unconscious, had no pulse or breath, and soon became cold and stiff. But patients on ventilators can stay warm and breathing for weeks, months, or even years. They digest food and produce waste.

So in 1968 an ad hoc committee at Harvard Medical School published a new set of standards for determining death—i.e., “brain death,” the irreversible loss of all brain function—that would allow doctors to remove vital organs without violating the self-explanatory “dead donor rule.” The legal and medical communities gradually accepted brain death over the next two decades to go along with the traditional “cardiac death,” or irreversible heart stoppage, as grounds for determining death. Both brain and cardiac death have been incorporated in various federal and state laws since the 1980s.

You with me so far? Hang in there. We’ve a little ways to go.

Minor Detours

There have always been critics of the idea of brain death, and not just because brain-dead people don’t always look dead. Although physicians insist that the methods for diagnosing brain death are very reliable, on rare occasions patients actually “come back to life,” and that makes people a little nervous.

In March of 2008, 21-year-old factory worker Zach Dunlap of Frederick, Oklahoma, was declared dead after horrific head injuries following an ATV accident. Doctors had confirmed there was no blood flow to his brain, but just before they disconnected the life-support to begin the retrieval process, his cousin, a nurse, got a reflex response when he scraped a knife across Zach’s foot. Dunlap later told the Toronto Star that he heard the doctors declare him dead! It was obviously a simple misdiagnosis—but how often does that happen? Of course, if the patient has vital organs cut out of him first, who would know?

Usable organs were still in short supply in the 1990s, when the medical community embraced what is known as “donation after cardiac death.” Basically, when the prognosis is poor enough, the patient’s family and doctors agree to shut off life-support, even if the patient is not quite brain dead. Doctors then wait two to five minutes for his heart to stop beating, plus a few minutes more to make sure, and then they operate.

Critics back then pointed out that defibrillators have revived many people whose hearts have stopped for longer than two or even five minutes. Were those people “dead” too? And what about the definition of cardiac death as “irreversible” stoppage of the heart? If you’re calling a patient dead because his heart stops after he goes off the ventilator, and then you take out that same heart and put it into somebody else and it works, was it really “irreversibly” stopped? Anyway, that’s what some argued.

But let’s be real. It’s pretty unlikely that your doctor will misdiagnose you as dead. And I wouldn’t count on spontaneously reviving after coming off life-support. No, it’s 2029, and we’ve moved beyond that.

You see, the debate over death and its application to organ donation simmered in the background of American society, in the academic journals and the occasional news story, through the 1990s and 2000s. The transplant community believed there was consensus on death, and many, frankly, worried that a lot of discussion would spook the public and make the donor shortage even worse. Doctors thought the whole issue was nonsense; as one told me around 2008, somewhat curtly when I asked, “There is no ambiguity about the definition of death.” So it just never got much public attention.

Course Correction

A few more minutes and we’ll be there. Let me tell you quickly what happened after that.

A handful of medical ethicists and academics criticizing brain death and donation after cardiac death just never gave up. They weren’t saying that because there might be a lack of clarity about the moment and nature of death, we should stop those practices. Well, a few were, but nobody took those people seriously. It would have drastically reduced the number of available organs.

No, instead, most critics were arguing that we needed to ditch the dead donor rule. In the August 2008, issue of the New England Journal of Medicine, Robert Truog, a Harvard medical ethicist, and Franklin Miller from the National Institutes of Health argued that doctors had been “gerrymandering” the definition of death so they could convince the public that they were following the dead donor rule. Better, suggested Truog and Miller, to admit that the patient might be in some sense alive when the organs come out; but contend that consent from the patient or surrogates made the practice ethical.

In retrospect, that was a key event in the development of transplantation practice—when doctors began to debate publicly whether they should remove vital organs from live patients. Once the idea was on the table, in the 2010s a few doctors began admitting, yes, we do that. And then more started admitting it, and soon, basically over the last two decades, the ethics of transplantation were reversed.

It is now unethical to take organs from anyone who is not at least a little bit alive (via life support, of course)—look at the risk to the recipient if you do otherwise! The organs might deteriorate in the interval between certain death and the operation. As Truog predicted, the big thing is consent. Mostly dead, plus consent, and you’re good to go.

Doctors, remember, don’t decide what’s ethical and then do it; rather, if enough of them start doing it, eventually they decide it’s ethical. As Truog said in a panel discussion connected to his commentary (talking about a transplant team that had waited 75 seconds after heart stoppage before taking the heart of an infant), “We know that if they said, ‘We’re not going to do this until there’s a national panel and we get approval,’ that it’s never going to happen. And the way change happens in medicine is somebody goes out and does it.”

That’s just how life is. Abortion and then physician-assisted suicide went through the same process—from unthinkable to unimpeachable—in about the same amount of time. Likewise, donation after cardiac death was somewhat controversial in the early 1990s because it was pretty close to that dead/not dead line. There were only a few dozen cases per year, but by 2009 there were hundreds of cases a year and transplant doctors regarded it as beyond question.

Green Light

So, as I was saying, consent is the critical issue now. Most Western countries passed a law in the 2000s or 2010s stipulating “presumed consent”—the idea that people are presumed to want to donate their organs unless they opt-out while still alive and conscious. Spain, Austria, Belgium, and some others had it by 2008, Britain adopted it in 2010 after a lengthy but subdued discussion, and the United States followed in 2015.

I’ve checked your driver’s license, and you haven’t opted out. Doctors will do their best for you, I’m sure, but you may end up on life support. The physician who treats you, and who will advise your family on whether and when to pull the plug, has nothing to do with organ donation; there’s no conflict of interest. It’s the only ethical way to handle it. Yes, any M.D. knows that organ donations extend tens of thousands of lives annually, and that thousands more people die waiting for one. But that knowledge will, theoretically, have no impact whatsoever on him.

Of course, your name and status, blood type, and so on, are sent to the regional Organ Procurement Organization (OPO) as soon as you get into the system, whether you’re dead or not. These private, nonprofit, government-authorized entities use nurses and social workers to find potential donors, obtain consent from families, and work with doctors and nurses to recover as many organs as possible.

In the old days, OPO representatives weren’t supposed to contact the patient or his family until he was declared dead. But, as the Washington Post suggested in a 2008 article, some OPO workers were already getting a bit more aggressive even then. They started hanging around hospitals looking for potential donors, for example, and asking doctors to administer drugs to thin blood or expand blood vessels—things that help keep organs viable—without family consent.

We’ve moved beyond that, as I say. My title with your regional OPO is Estimator. You’re reasonably young, in good health apart from your injury, and have no external indicators of any major health problems. I’d say you’re worth at least $15 million. To your family, I mean, of course. How, after all, could anyone put a price on the chance to save someone’s life?

Not Dead on Arrival

Now it’s true that in 1984 Congress passed the National Organ Transplant Act. It outlawed the buying and selling of human organs or body parts for transplantation, but permitted dead donors’ families to receive some compensation for burial costs. And we respect that prohibition. We buy no body parts.

But you know how it is. Some folks began arguing that live organ donors deserved a little something for their trouble (take a look at Sally Satel’s 2009 classic, When Altruism Isn’t Enough—The Case for Compensating Kidney Donors), and from there it was a pretty small step to saying that the families of dead donors deserved some appreciation, too. In 2016 a federal court agreed with an Ohio woman that there is no significant ethical difference between covering burial costs and compensating a family for emotional distress from imagining their loved one all sliced up on the operating table.

So that’s what I mean when I say you’ll “almost certainly” be dead when—there I go again, I mean if we take your organs. You may not be technically brain dead if they shut off your life support, but you wouldn’t have any sort of quality of life, anyway. You’ll definitely be mostly dead. And all that money on the table, so to speak, will have absolutely no impact on the decision regarding life support—trust me.

The odd thing is, it might not have been this way. If the public had complained loudly enough when all these things started, the ethics of transplantation wouldn’t have gotten to where they are right now.

Well, here we are at the hospital. Shall we go in? Are you with us?


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