Originally published on MercatorNet on May 28, 2021 by Nancy Valko

I have been writing for many years about the implications of brain death, the lesser known “donation after cardiac/circulatory death”, diagnosed brain death cases like the supposedly “impossible” prolonged survival and maturation of Jahi McMath, and unexpected recoveries like Zack Dunlap’s. Some mothers declared “brain dead” were able to gestate their babies for weeks or months to a successful delivery before their ventilators were removed.

Last August, I wrote about the World Brain Death Project and the effort to establish a worldwide consensus on brain death criteria and testing to develop the “minimum clinical standards for determination of brain death” (emphasis added).

I also wrote about the current effort “to revise the (US) Uniform Determination of Death Act (UDDA) to assure a consistent nationwide approach to consent for brain death testing” that could otherwise lead to a situation where “a patient might be legally dead in Nevada, New York, or Virginia (where consent is not required). But that same patient might not be legally dead in California, Kansas, or Montana (where consent is required and might be refused)” (emphasis added).

The Uniform Declaration of Death Act (UDDA) was drafted in 1981 by a President’s Commission study to brain death and approved by both the American Medical Association (AMA) and the American Bar Association (ABA). It was intended to provide a model for states to emulate.

It offered two definitions of when a person could be declared legally dead to align the legal definition of death with the criteria largely accepted by the medical community:

“Irreversible cessation of circulatory and respiratory functions (the traditional definition of death); or   

Irreversible cessation of all functions of the entire brain, including the brain stem (brain death)” (emphasis added)

The UDDA in some form has since been adopted by all US states and the District of Columbia.

Pushback against revision

But now, 107 experts in medicine, bioethics, philosophy, and law, are challenging the proposed revisions to the UDDA. They include renowned ethicists like Robert P. George, John Finnis, and Franklin G. Miller. While they admit that they “do not necessarily agree with each other on all aspects of the brain-death debate or on fundamental ethical principles”, they do object to three aspects of the revision to:

“(1) specify the Guidelines (the adult and pediatric diagnostic guidelines) as the legally recognized “medical standard,” (2) to exclude hypothalamic function from the category of “brain function,” and (3) to authorize physicians to conduct an apnea test without consent and even over a proxy’s objection.” (emphasis added) 

These experts’ objections to those proposed revisions are that:

“(1) the Guidelines have a non-negligible risk of false-positive error, (2) hypothalamic function [a small but essential part of the brain which helps control the pituitary gland and regulates many body functions] is more relevant to the organism as a whole than any brainstem reflex, and (3) the apnea test carries a risk of precipitating BD (brain death) in a non-BD patient … provides no benefit to the patient, does not reliably accomplish its intended purpose” … and “should at the very least require informed consent, as do many procedures that are much more beneficial and less risky.” (emphasis added)

And these experts further state that:

People have a right to not have a concept of death that experts vigorously debate imposed upon them against their judgment and conscience; any revision of the UDDA should therefore contain an opt-out clause for those who accept only a circulatory-respiratory criterion.

My own experience

Many years ago, I served on a hospital ethics committee when a doctor complained that he could not arrange an organ transplantation from an elderly woman in a coma caused by a stroke because she “failed” one of the hospital’s mandated tests for brain death. He said he felt like he was “burying two good kidneys”.

Although I already knew that the medical criteria used to determine brain death vary — often widely — from one hospital to another, one young doctor checked our area hospitals and came back elated after he found a hospital that did not include the test the elderly woman had “failed”. He suggested that our hospital adopt the other hospital’s criteria to allow more organ donations.

When I pointed out that the public could lose trust in the ethics of organ donations if they knew we would change our rules just to get more organ transplants, I was told that I was being hard-hearted to people who desperately needed such organs.

Unfortunately, now some countries’ healthcare ethics have degenerated to the point where euthanasia by organ donation is legally allowed.

Personally, I am all for the ethical donation of organs and tissues. Years ago, I volunteered to donate a kidney to a friend and one of our grandsons was saved in 2013 by an adult stem cell transplant.

But I do not have an organ donor card nor encourage others to sign one because I believe that standard organ donor cards give too little information for truly informed consent. Instead, my family knows that I am willing to donate tissues like corneas, skin and bones that can be ethically donated after natural death and will only agree to that donation.

The bottom line is that what we don’t know — or what we are allowed to know — can indeed hurt us, especially when it comes to organ donation. We need to demand transparency and accurate information because good medical ethics are the foundation of a trustworthy healthcare system.