By Peter Laird, MD
A friend recently sent me an article from the Wall Street Journal about organ donation and allegedly losing autonomous rights by signing an organ donor card. Initially, my first impression fell in line with the majority of comments to this article that this could damage the fragile organ donation system we have in America. However, using this commentary as a basis for further investigation, there is much in the commentary that should become part of the organ donor discussion of today:
Becoming an organ donor seems like a win-win situation. Some 3.3 people on the transplant waiting list will have their lives extended by your gift (3.3 is the average yield of solid organs per donor). You're a hero, and at no real cost, apparently.
But what are you giving up when you check the donor box on your license? Your organs, of course—but much more. You're also giving up your right to informed consent. Doctors don't have to tell you or your relatives what they will do to your body during an organ harvest operation because you'll be dead, with no legal rights.
The most interesting and controversial evidence noted in this commentary is a reference to a medical report from 1999 by an anesthesiologist that records three instances of failure of the brain death criteria including one "donor" who had his organs harvested even though he had spontaneous respirations and movement at the time of organ removal contrary to accepted brain death criteria. (here) Even more troublesome are the collections of patients who have been declared brain dead by accepted criteria to subsequently survive and in some cases recover completely. (here)
Some four hours after doctors declared Zack dead, a nurse began to remove tubes from Dunlap. His cousins, Dan and Christy Coffin, both of whom are nurses, were also in the room. Something about Zack’s appearance made them think that he wasn’t as dead as the doctors said. On a hunch, Dan pulled out his bone-handled pocket knife and ran the blade up the sole of one of Zack’s feet.
‘Our son is still alive!’
The foot yanked away, but the other nurse said it was a reflex action. So Dan Coffin then dug a fingernail under one of Zack’s nails. Zack yanked his arm away and across his body, and that, the other nurse agreed, wasn’t a reflex action. It was a sign of life.
“We went from the lowest possible moment to, ‘Oh, my gosh, our son is still alive!’ ” said his mother. “That was the most miraculous feeling. We had gone from the lowest possible emotion that a parent could feel to the top of the mountains again. We were still very guarded, because we weren’t sure what his prognosis would be, but just to hear the words that he was back with us is something we’ll remember forever.”
Doctors warned the family that Zack could have profound brain damage that would prevent his leading anything resembling an active life. But within five days he opened his eyes, and 48 days after the accident, he walked out of a rehab center and returned home, where the entire town gave him a hero’s welcome.
He’s working to regain his memories and to control his emotions, and he’d like to go back to his job as a warehouse worker. He also wants to get his driver’s license back.
“I’ve been wanting to drive [from] about the day I was back from rehab,” he said.
At Morales’ request, Zack reached in the pocket of his jeans and pulled out the pocket knife his cousin had used to prove he was still alive. Dan Coffin had given it to him as a gift and a memento.
“It makes me thankful that they didn’t give up,” Zack said, turning the knife over in his hand. “Don’t let the good die young.”
Shortly thereafter, he showed signs of breathing and brain activity. A few months later, this young man sat in my office with his father as they related the story. The strangest aspect of the entire story was his statement that he had his death certificate at home with him. He made a full and total recovery with no deficits whatsoever and returned to military duty as a computer specialist.
A second case I was involved with as a resident in training for my internal medicine career was that of a young woman who had an anoxic event (lack of oxygen) of unknown duration. I remember becoming involved with the case as a team of doctors tried to persuade the family that she was brain dead and to withdraw care. They refused and continued a vigil of prayer and support continuously. A couple of days later, the nurses began to tell us that the patient was moving spontaneously yet none of the physicians ever observed that in our brief visits. Things changed when the patient woke up and began breathing spontaneously without the ventilator.
One of the most poignant encounters I have ever had with a patient occurred about six months later when this same young woman walked back into the intensive care unit to thank all of us involved in her care. She did have a permanent brain injury resulting in complete blindness, but before me was the most grateful patient I have perhaps ever encountered in my entire medical career with expressed joy for her second lease on life even with the blindness. I am not sure how much her family related to her on the urgent meetings to withdraw care by the same team of doctors she was now thanking. It is a moment I shall never forget considering how close she had been to death by organ donation.
The demand for well preserved and intact organs for those also in desperate need is well documented with available organs only a fraction of those on the waiting list. Nevertheless, as great as the benefits of cadaveric donation, over forty years after the Harvard criteria for brain death came into existence, protocols vary from hospital to hospital and state to state. In the last decade, to accommodate this growing demand for organs, standards have been loosened to increase available donors with extended donor criteria and those patients with cardiac deaths instead of brain death. Just one case of mistaken brain death diagnosis should give us all pause to consider not only our own loved ones in need of a new kidney, heart, lung or liver, but to hold fast that we would never see even one case of death by organ donation.
In the zeal to secure higher quantities of viable organs, we must first remember the dictum to do no harm. Fortunately, the cases of incorrect diagnosis of brain death are quite rare, but at the risk of making any error, the certainty of brain death must be considered an area where caution is in order. Anyone that listens to Zach's testimony of remembering being declared brain dead I am sure will consider that the Wall Street Journal commentary is an important dialogue to continue despite the fact it will most certainly be an unpopular and controversial endeavor in the renal community. The integrity of the organ procural system must be maintained at the highest levels of ethical donation, otherwise we risk losing the support of the community, further increasing the waiting times for transplant and the inevitable death toll that will likewise follow.