Deregulation in the death business

Dick Teresi Author, The Undead
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The following is an excerpt from “The Undead: How Medicine is Blurring the Line Between Life and Death” (Pantheon Books).

For nearly 5,000 years, declaring a person dead when he is still alive has been considered a serious gaffe if not a crime. Ancient Egyptians who made such errors were often stoned. Through the centuries and across cultures, safeguards have been instituted to avoid mistaken death and premature burial. The pope, for instance, has a special cardinal, the camerlengo, whose authority supersedes that of the pontiff’s doctors. The camerlengo calls out the pope’s baptismal name three times and taps him on the forehead with a silver hammer to ascertain that he is indeed dead and the doctors are correct.

Today, in the United States, there are no longer any such regulations or customs. Since 1981, when the Uniform Determination of Death Act (UDDA) was passed, “You’re dead when the doctor says you’re dead,” as one lawyer put it. There is no appeal. The UDDA makes it clear that doctors cannot be prosecuted for blowing the call, no matter how egregious the error. Certainly they can’t be stoned to death.

The law stems back to 1968, when an ad hoc committee of 13 men commissioned by the Harvard Medical School added a new type of death, brain death, to the standard heart-lung form of death. Organ transplantation was the newest new thing of that era. The technology was improving by the day but there was a problem: not enough organs. Let me rephrase that: not enough viable organs. When a person dies (a normal death), the heart stops and blood no longer nourishes the organs. They spoil. But what if you could declare a person dead before his heart stopped? That’s what the Harvard ad hoc committee did. If the brain was dead, the person was dead, the committee said. It was more than a happy coincidence that these “dead” patients could then be put back on their ventilators and have their organs excised even while their hearts continued beating. The committee had gerrymandered the border between life and death, pushing more people into the dead zone. Its article, published in the Journal of the American Medical Association, was hardly scientific. The committee examined zero patients. It cited zero scientific papers. The members were clearly winging it.

The Harvard test for brain death was simple, quicker than a standard eye exam. All you needed was a flashlight, a cotton swab, some ice water and other rudimentary tools. When these clinical tests were completed, the patient’s respirator was disconnected to see if he could breathe on his own. If he didn’t, he was brain dead. (In some states some or all of the above tests must be repeated hours later.) The Harvard committee recommended a confirmatory EEG to check for brainwaves.

The Harvard criteria, as they are called, ran into immediate trouble. A follow-up study of 25 patients found that some brain-dead people were broadcasting brainwaves. Not a good sign. A few were sexually aroused when stroked. (What inspired the researchers to stroke them is an unanswered question.) The medical establishment came up with an immediate solution to these setbacks. Stop doing EEGs, and you won’t find brainwaves. Presumably they also stopped trying to sexually arouse the “dead” patients. Still, treating these patients as dead was counterintuitive to many. The brain-dead are pink, warm and breathing. “I like my dead people gray, cold and not breathing,” said one doctor.

The Harvard criteria were clearly nuts, but many physicians loved them because they opened the floodgates for organs, transplantation today being a $20 billion per year industry. The downside was being arrested for murder when sending what was previously considered to be a living person to a five- to seven-hour organ harvest sans anesthetic. Hence, the UDDA was needed. It codified brain death in all fifty states but listed no real standards for its declaration: “This act is silent on acceptable diagnostic tests. … The medical profession remains free to formulate acceptable medical practices.” Doctors cannot be prosecuted criminally or be held “liable for damages in any civil action” as long as he acts in “good faith.” Certainly it seems in good faith to carve a liver out of an obscure donor and ship it off to Mickey Mantle, Larry Hagman, a Kuwaiti oil sheik or someone else with the ability to pay $300,000 to $1.2 million per organ.

Other problems have emerged to puncture the argument that brain-dead patients are merely hours or days away from standard cardiopulmonary death. Unlike most dead people, beating heart cadavers (BHCs), as they’re called, can get bedsores, infections, fevers and have heart attacks (and be resuscitated). They urinate. As of this writing 22 brain-dead mothers have given birth to live babies, one woman gestating her baby for 107 days after being declared brain dead.

As for the disturbing harvest process itself, when the organs of BHCs are being extracted, they display the same reactions that living surgery patients display when not given enough anesthetic. They can recoil at the scalpel’s incision; their heart rate and blood pressure can skyrocket. Organ donors are not usually given anesthetic in the U.S. because it can damage organs, but mostly because it would be an admission that these people are … well … still people.

What legal rights do you as an organ donor have in this country after being declared dead? Basically, none. George Annas, a lawyer specializing in health law, says, “It’s in or out. If you’re alive you’re a person; you’re protected by the Constitution. If you’re dead, our only obligation is to bury you. So it’s very, very critical that we know who’s in and who’s out.” The problem is you’re dead when the doctor says you’re dead, and there is no camerlengo to save you. What if you should start breathing spontaneously in the middle of an organ harvest, positive proof that you are alive? We don’t have to speculate. It has already happened. Anesthesiology, the journal of the American Society of Anesthesiologists, cites the case of a 30-year-old BHC who began breathing spontaneously as he was being prepped for harvesting. The transplant team needed his liver, and they proceeded with the harvest over the objections of the anesthesiologist, who saw the donor move and react to the scalpel.

The UDDA is the ultimate deregulation, loosening standards for declaring death, and not holding doctors responsible for mistakes. In its defense, it has been good for business. As mentioned, the transplant industry pulls in $20 billion per year. But why not create a fair playing field for the donors, and deregulate them as well? At present, there is no informed consent for donors, telling what the operation (harvesting organs) is like, and the consequences. Why shouldn’t you be informed before you sign away your organs? Why has the right of informed consent been taken away? In a business that rakes in $20 billion, why is there a law forbidding donors and their families from profiting from organs? Yes, paying for organs could create all sorts of abuses. As a freelance writer, I am not equipped to figure out how to avoid these problems. But abuses are already in place, those of a $20 billion industry preying on defenseless, unrepresented, un-championed donors. Shouldn’t someone represent the donors, not necessarily to broker cash out of the industry, but to protect donor rights before death takes those rights away? Federal law also mandates that hospitals make the families available to the organ procurement organizations (OPOs, a.k.a. organ banks) so that they may talk them out of their son, daughter, wife, husband or other relative’s body. Imagine your daughter dying in the ICU. You’re beset with grief when organ wranglers descend upon you, asking for your not-yet-dead daughter’s body. At more than $700,000 per organ, with an average yield of 3.3 organs per body, your daughter will generate more than $2 million for the industry. Should the federal government be helping the sales force of a business?

Dick Teresi is the author of “The Undead: Organ Harvesting, the Ice-Water Test, Beating-Heart Cadavers — How Medicine Is Blurring the Line Between Life and Death.”