“I just think it’s inhumane to not feed my child, to not refer to her by her name, and stop us in our tracks.”

Chilling. It’s happening again. As it has many times over since Terri Schiavo was starved and dehydrated to death on court order in March 2005 and plunged the issues of biomedical ethics, healthcare for the cognitively impaired, ‘living wills’ and advance directives and euthanasia straight into the headlines and center of many family conversations.

This time it’s teenager Jahi McMath, whose family is battling to save her “from doctor-ordered starvation after a routine tonsillectomy left her brain-damaged and unable to breathe on her own.”

Since then, the hospital has been fighting to remove the eighth-grader from all life support, even going so far as to persuade a judge to declare her “legally dead” in the eyes of the state of California, where the law defines death as an absence of brain activity.

That’s the crux of the problem and issue at stake in this case which stands to carry a lot of weight in healthcare decisions for impaired individuals. There are two definitions of death involved, ‘brain death’ and ‘non-heart beating death’, and most people don’t know that or how much depends on which definition is used. Like organ harvesting.

…since the early 1990s, a little-known but disturbing revolution has been occurring in organ donation. A new procedure now called “donation after cardiac death” (DCD) has been quietly added to brain death organ donation in more and more hospitals in the United States and in other countries. It was made possible by linking the so-called right to die with organ donation…

In 1993, a whole issue of the Kennedy Institute of Ethics Journal2 was devoted to discussing a new pool of organ donors — patients who are not brain dead but who are on ventilators and considered hopeless in terms of survival or predicted “quality of life”. In these patients, the patient or family agreed to the withdrawal of life support and to a “do not resuscitate” order. The patient was then taken to an operating room where the ventilator was withdrawn. When (or if, see below) the breathing and heartbeat stopped within about one hour, doctors waited for usually two minutes before then pronouncing cardiac death rather than brain death. The patient’s organs were then harvested for transplant. At that time, this was called non-heart-beating organ donation (NHBD) but since then, some insisted that the term was confusing and the name morphed to donation after cardiac death (DCD). However, since hearts have now been transplanted and thus are obviously not dead, there is a current proposal3 to change the name to donation after circulatory death and keep the acronym DCD.

NHBD/DCD was unknown to the American public until 1997 when many viewers were shocked by a report on the influential US television show 60 Minutes that revealed little-known policies called NHBD at some hospitals that would allow taking organs for transplant from persons who could be, in narrator Mike Wallace’s words, “not quite dead”.

The 60 Minutes story explored the possibility that these NHBD policies were allowing doctors to discontinue life support, administer possibly harmful medications to some potentially salvageable patients, and harvest these patients’ organs for transplants using cardiac rather than brain death criteria.

This CNN article on Jahi McMath highlights the controversies. They are growing more urgent, for the cause of human dignity and the fundamental human rights of the most vulnerable.

And they’re still in flux, and still breaking news. Read and listen carefully to terminology.

Sheila Liaugminas

Sheila Liaugminas is an Emmy award-winning Chicago-based journalist in print and broadcast media. Her writing and broadcasting covers matters of faith, culture, politics and the media....