Brain Death: a fiction that has outlived its usefuleness

It may come as a surprise to some readers that I regard ‘Brain Death’ as a fiction. But brain death was invented by a US president’s commission as a way of deciding that patients were dead when they manifestly were not dead. That is they still had a heart beat. The sole reason for creating this new category of death was to provide an avenue for organ donation. If the patients were defined as being dead then we could apply the ‘dead donor rule’. The idea being that we cannot take organs from someone who is still alive, that would cause their death, and to cause the death of one person to save the life of another was not ethically acceptable.

So we are now in the situation where, as one example, a baby who is profoundly asphyxiated, who has no chance for recovery, and for whom intensive care will be discontinued and they will be allowed to die; if such a baby, on brain death testing, takes a few gasps when the CO2 hits 70, we are not allowed to use their organs, even when the parents want us to, and even when all the cortex of the baby, everything that makes us human, is irrevocably destroyed. Instead we have to shut off the ventilator, let the baby die, and then burn the organs that could have saved another baby’s life.

Is that, overall, a better outcome for humanity than using their organs to save the life of another infant? Is it a better outcome for that individual baby, or their family?

How was the concept of brain death developed? Human beings who have extremely severe brain injury may die without ever having regained consciousness. So the presidential commission decided that they were, therefore already dead. Such a decision is a 20th, 21st century consideration; before intensive care, such individuals would be truly dead already, that is their hearts would have stopped. But simply by breathing for them, we can keep alive those would previously have been dead, and create a new category of patients with profound, unrecoverable, brain injuries who continue to have cardiac activity. Tests were invented to show that the brain stem was not working, and, without a brain stem that works, consciousness does not return and the patient will soon die.

In the newborn, the brain stem is particularly resistant, so despite devastating lethal brain injury, many infants will continue to breathe a little, even when all other function has gone.

The ‘dead donor rule’ has become a mantra of organ donation. Even when we stretch the rule to breaking point.

A recent couple of articles in the PNEJM argue the issues. In one the author promotes keeping the DDR, but at the same time speaks positively about a new innovation, that, because taking out both kidneys does not immediately cause death, that could be done in patients who are not ‘Brain Dead’. But taking out the heart would not be acceptable, because that would destroy patients trust in doctors.

On the other side of the argument are those who consider ‘brain death’ to be a convenient fiction, and promote the idea that once (and only once) we have decided to stop ongoing intensive care, that consideration of organ donation could then follow without these restraints. This might sound like a sort of utilitarism, making use of patients and their organs in the most convenient way possible, but honestly I can’t see it. I can’t see any doctor deciding to interrupt intensive care for a patient just in order to take out their viable bits to give to someone else… that happens in movies, but in real life, not so much. Would such a change really affect the public’s trust in intensive care doctors? I am not so sure.

The somewhat less controversial new approach of stopping intensive care in the operating room for a potential donor who is ‘not quite Brain Dead’ and then waiting for their heart to stop with scalpels at the ready, and quickly whipping out their organs before their organs deteriorate is, to me, just as problematic. It is also less efficient, and also without a crystal clear definition of how long you have to wait after the last slow heart beat has passed to be sure there will not be another one; or even whether you should wait until after mechanical activity of the heart has stopped, or must you wait until all electrical activity has stopped.

I hope these articles in the PNEJM are the start of a new debate, that can start where the realities of intensive care have now brought us, where lethal brain injuries do not cause instant death, nor necessarily lead to ‘Brain Death’, but frequently lead to interruption of intensive care and the death of the patient, whose family occasionally might be given the option of helping another person with the organs which still function.

About keithbarrington

I am a neonatologist and clinical researcher at Sainte Justine University Health Center in Montréal
This entry was posted in Neonatal Research and tagged , . Bookmark the permalink.

2 Responses to Brain Death: a fiction that has outlived its usefuleness

  1. John Lantos says:

    Your history is a little inaccurate. Brain death was first proposed by an ad hoc committee at Harvard before there were any Presidential Bioethics commissions or, for that matter, any bioethics centers. That committee, chaired by Henry Beecher, did not actually call it brain death. They used the term irreversible coma, but used it to define a situation in which it would be permissible to a) withdraw life support (this was a decade before Quinlan) and b) harvest organs. They published this in JAMA ( Some state legislatures took it up and passed a series of laws using the criteria that Beecher and the “ad hoc committee” set out. (

    The first Presidential Bioethics Commission didn’t weigh in until over a decade later. (

    That history doesn’t change the philosophic problems highlighted by the recent articles. But the debates that took place four decades ago covered many of the same issues and so are worth reading. The key question: at what point do we cross some line in our utilitarianism and risk killing patients who might have survived in order to benefit others.

    The Bush/Kass Presidential Bioethics Council revisited the issue and wrote a very thoughtful review of all the issues that is available free on-line –


    • Thanks for the clarifications John, I wrote the post using my memory without checking the history, always a dangerous thing to do. That said, the idea of irreversible coma is to me not the same as defining death by a series of clinical tests in someone whose heart is still beating. I think the concept (or fiction) of brain death arose from the idea that if you are comatose and there is no chance of regaining consciousness before your heart stops, then that is, in some ways, equivalent to already being dead.
      The next step was to say that yes, the patient really is already dead.
      That was the step that I thought was taken by the 1981 president’s commission, but I am not a specialist ethicist, I am happy to be corrected.

      As Robert Truog noted in an email to me about the post, this is also an issue of ‘rights’ that is, if we have decided that intensive care will be discontinued and we want families to have the right to decide the trajectory of death over the next several hours, we deny them some options as he put it (I am sure he won’t mind me quoting this), ‘being allowed to donate organs as a part of the dying process can be seen as human right that should be respected and honored’.

      I think if we go back to ‘irreversible coma’ as the criterion, (and there may be others) then a baby whose brain stem tests are almost all negative and whose cortex is liquefying, if they gasp occasionally during an apnea test, and thus are not ‘Brain Dead’, could still be a donor candidate once the decision has been made to discontinue therapy.

      I do think we need to advance carefully, I do not think the first priority should be to provide more donor organs, the first priority should be to protect our critically ill individual patients, part of that protection however, should be to protect their wishes and the wishes of their families if they are dying.

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