A scary plan to revise the definition of death

Death can't be denied but it can be edited.

In 1981, the Uniform Law Commission proposed a model law for the determination of death. It says that individuals have died when they have experienced an irreversible end to either their respiratory and circulatory functions or their brain functions. Most states have adopted this definition, and the rest adopted it in substance if not precise wording.

The commission is now considering whether the definition should be revised. One proposal has been gaining influence but has dangers that ought to keep it from prevailing.

That proposal has three crucial elements. It would specify that current medical guidelines should be followed in diagnosing brain death, whereas current law is silent on that point. It would list criteria for brain death that would allow it to be declared even when patients show some function in the hypothalamus, a structure deep in the brain. And it would allow doctors to dispense with getting a proxy's consent before conducting an apnea test, that is, checking whether the patient can breathe spontaneously as an indication of whether brain death has occurred.

The revisions offer several potential advantages. They would bring the law into better alignment with medical practice: The law specifies that "all functions of the entire brain" have to have irreversibly stopped, while the medical guidelines for declaring death do not require checking hypothalamic function.

Why not align the two the other way, by having the guidelines follow the current law? Rigorously following it, as one author of the proposal has explained, would probably lead to fewer organs being available for transplantation, since doctors would not be allowed to remove organs from patients with that function. Hence the preference for changing the law.

The revisions would also advance the law's core purpose of uniformity. The current law's silence about how brain death is diagnosed means that someone could be found legally dead in Nevada even if ruled alive in Kansas.

Despite all the arguments in favour of the revisions, more than 100 experts in medicine, law, philosophy and bioethics have signed a statement of opposition organized by D. Alan Shewmon, an emeritus professor of pediatric neurology at UCLA. The signatories come from around the world — the statement notes that developments in US law can have global "ripple effects" — and have widely varying views about how death should be determined and about related issues.

John Finnis, an emeritus professor of philosophy at Oxford University and a law professor at Notre Dame who is well-known for his belief in the sanctity of all human life, signed. So did Peter Singer, a professor of bioethics at Princeton University who expressly rejects the sanctity of life principle and is known for his utilitarian arguments for the moral permissibility of abortion, infanticide and euthanasia.

The Shewmon statement raises a serious objection to each part of the revision. It contends that the current guidelines pose an unacceptably high risk of classifying people as dead when they aren't. They could have this effect, for example, in certain cases in which blood flow has drops to a level that prevents brain function but might be brought back to a higher level. Patients could also be categorized as dead, according to the statement, if they are judged comatose because they are unresponsive even though they are possibly conscious.

It notes multiple examples of patients surviving even after meeting the guidelines' criteria for death and points out that there would likely be more if meeting those criteria did not so often lead to the withdrawal of medical support or the removal of organs.

The objecting experts insist that informed consent is necessary for an apnea test, "given that many procedures that are much more beneficial and much less risky require" it. If a patient is in sufficient peril, the test can cause the brain death it is attempting to diagnose.

They even suggest, although they do not explicitly say, that the test is simply unethical. ("It is doubtful that any proxy, after being truly informed about the procedure, would ever consent to it.")

Singer's distinctive perspective is worth considering. He has no objection in principle to taking the organs of living human beings and thereby causing their deaths; he has written that it would sometimes be the right thing to do. He does not, however, favour changing our standards for what constitutes death to obscure what we would be doing. He wants us to do it with a clear understanding.

Those of us who disagree with him on the ethical question should agree all the more with him on the definitional one. There is even a utilitarian argument to be deployed here: People may be less willing to designate themselves as potential organ donors if they believe the quest for usable organs is changing the way patients are treated.

"You start blurring those lines and the worry on the part of the family members starts to be, 'You're just encouraging me to take him off the vent so you can get his organs,'" says Aaron Kheriaty, director of medical ethics at UCI Health.

But even that weighty consideration is ultimately secondary. We should strenuously resist a system of classifying who is alive that is underinclusive — something that is, after all, literally the stuff of nightmares.

Disclaimer: This article first appeared on Bloomberg, and is published by special syndication arrangement