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Was a patient declared brain dead ten years ago while breathing independently?

In the most recent Human Life Review a piece is reprinted from the HLR blog called "Coming to Peace with Brain Death." The title notwithstanding, the post actually indicates that the author, journalist Nona Aguilar, is far from being at peace with brain death.

She tells the story of her friend Richard, for whom she had medical power of attorney. Aguilar says that ten years ago her friend had a stroke. She was then strongly pressured by the hospital to agree to having his heart taken for transplant. The hospital told her that he was brain dead.

We find a crucial detail in Aguilar's account, which I emphasize below:

When I ran through the hospital’s swinging doors, signed health care proxy in hand, I learned that Richard was completely non-responsive. Further tests the following day indicated his condition remained unchanged.

In other words, he was brain dead.

A young nurse from the hospital’s organ transplant team came into Richard’s room to talk to me. Richard’s close friend Barbara was also there, so the nurse spoke to both of us. The question: Would I authorize an organ donation? Specifically: Would I authorize removal and donation of Richard’s heart?

For a heart transplant to be successful, the donor heart must be alive, throbbing and beating at the time of removal. The problem: The medical people considered Richard to be dead. I didn’t.

Despite the nurse’s wonderful, calm manner, I became stressed, upset. Could I think about it? Of course, but an answer as soon as possible was important.

I launched a frantic effort to learn about “brain death.” Richard’s medical reports, which were explained to me in excruciating detail, belied what I saw: a man who appeared to be peacefully asleep, breathing on his own.

First of all, it is simply untrue that "completely non-responsive" without likelihood of becoming responsive is "in other words...brain dead." That is not what "brain dead" allegedly means in the medico-legal literature. It allegedly means that the physical brain, including the brain stem, has completely ceased to function. I have raised questions as to whether there is such a condition, without concomittent cardiac arrest, that is reliably diagnosable, but let's keep it clear: Being unresponsive or being in a so-called "persistent vegetative state" or anything of that kind, whatever the prognosis, isn't even what brain death is alleged to be.

The most striking point here is this: No one is ever supposed to be diagnosed as brain dead while breathing on his own. Ever, ever, ever. Independent breathing indicates brain stem function. See here, for example.

What Aguilar reports should be a bombshell. Any hospital that made a diagnosis of brain death and tried to take organs from a person who was breathing independently was attempting to commit murder by every possible criterion. Even if one believes firmly that there is such a thing as total brain death, that it can be reliably diagnosed, and that a person diagnosed as brain dead is biologically dead, this one shouldn't even have been close. It should have been a cut and dried case: This patient is unambiguously, undeniably biologically alive.

So striking was this portion of Aguilar's report that I thought of trying to get her contact information and writing to her to ask her to confirm that her friend Richard was not on a ventilator. But I see that a commentator in the comments thread, John Janaro, has done that already. (For some reason I cannot seem to link individual comments. His comment was posted in the thread under the entry at 3:47 p.m. on July 14.)

Aguilar immediately responds and is adamant: Richard was definitely breathing on his own without a ventilator.

Understandably enough (I imagine any lawyer would advise this), she does not name the hospital. But this should be a scandal for that hospital. No hospital should ever under any circumstances say that a patient is brain dead and wheel him to an operating room to take his heart out if he is breathing on his own.

Not to keep you on tenterhooks, I will tell the end of the story: Richard went into cardiac arrest as he was being wheeled away to have his heart removed in the operating room. So he died of natural causes before they could kill him.

I am not claiming that this sort of thing happens often. At this point, I simply don't know. My own research on this indicates that most of the time hospitals at least try to cross the pons asinorum of diagnosing brain death: Is the patient breathing independently? In fact, I have never before heard of a case of this kind.

The most grisly cases I know of involve a) patients connected to ventilators who manifest physiological pain responses while undergoing organ harvesting or b) patients who are diagnosed as dead by the Pittsburgh Protocol, also known, misleadingly, as non-heart-beating donation, rather than by brain death criteria. In the case of NHBD there is genuine reason to fear that the patient could actually revive during harvesting, because the patient's heart has stopped only for a very short time before circulation is restarted. (See the second part of the post here.)

But a hospital that diagnoses a patient with both a beating heart and independent breathing as brain dead and wheels him toward the operating room to take out said beating heart--that's a new one on me.

So I have to recalibrate. How often is this happening? Was this an aberration for that hospital? Has that hospital gone on doing it? Do other hospitals do it? Why didn't the other people whom Aguilar desperately consulted tell her that something was seriously wrong with the hospital's diagnosis?

The story Aguilar tells should be more widely known, especially by people considering agreeing to vital organ donation for themselves or for loved ones.

Comments (5)

Lydia, the articles you've written on this subject are fascinating. Can you explain your own opinion on why hospitals (in a "wonderful, calm manner") are pushing this?

If you read articles promoting organ donation you will find statements like, "X many usable organs are buried every year." What that means is, "X many usable organs were buried, because Y many people died, and their bodies were buried by their relatives without having their organs donated."

What has happened is that human bodies have come to be thought of as a resource. That is a natural and almost inevitable concomittant of organ donation. It's hard to see how it could fail to happen once we think, "So-and-so is dying. Maybe we can use his organs."

I realize that most people regard organ donation as not inherently bad, but when one thinks about it, there is something vulture-like about it in the very nature of the case. The living human being is thought of as a _source_ who might be able to be used once he is dead.

Add to that the fact that organ donation has come to have an almost religious significance in our culture. It is considered magnanimous, selfless, even a form of on-going life. I have read many articles in which it is stated that the family felt like their loved one was "living on" because his heart was transplanted to someone else. Anyone who does not agree to donate organs is regarded as selfish and miserly, a veritable dog in the manger who wants to keep others from using his body after it is no longer useful to himself.

Now, in order to make all of this work, we _must_ maintain that belief that the person is really dead--in other words, that his body really is of no use to himself anymore. Otherwise we have a genuine conflict of interest between the patient donor and the potential organ recipient, and we are actually asking the person to give his life for someone else. That might still be pushed as a heroic and selfless act, but right now that isn't the claim. Right now the argument is, "After you are dead anyway, what possible objection could you have to other people's having your organs? You won't be needing them anymore."

There is a stark scientific problem with this argument, however, at least when it comes to vital organs: It is literally impossible to transplant a usable heart, lung, or (I believe) liver from a cold corpse. These organs must be receiving circulation and oxygen right up until the time that they are taken. At the *most*, the Pittsburgh Protocol allows five minutes of cessation of circulation, but that is not usually used, because the fear is that the organ will become unusable. With the Pittsburgh Protocol the most they usually use now is a 2-minute rule. Then circulation is started back up.

What does this mean? This means that, contrary to popular perceptions, you aren't taking that donor heart from an unambiguously dead patient. You can't be, or it wouldn't be usable. Circulation must be taking place. Aguilar emphasizes this in her own piece, and on that point she is right.

So now we have a problem, right? You have to take the donor heart out from a patient where circulation is taking place. How do you know he's dead, then? And from there we are off to the races with various dubious definitions such as brain death or "your heart stopped beating for two minutes and we are going to make darned good and sure you don't wake up now," aka the Pittsburgh Protocol. (Arguably, when done right, brain death diagnosis is more rigorous.) As I have mentioned in other articles, sometimes anesthesia is given so the people assisting in the removal aren't freaked out when the "corpse" starts showing physiological signs that would usually be taken to indicate pain. This all arises in the nature of the case from the need to have these organs oxygenated and not approaching room temperature.

Kidneys are a little more "durable." Sometimes they will take them from a patient who has been dead longer, but they prefer not to. The standard protocol is to fire back up the machines after only a tiny break, or just to keep the machines going, and take the vital organs from a "corpse" with circulation going on to make sure the organs are fresh and usable. Interestingly, this is considered a matter of medical ethics for the sake of the potential recipient--so he doesn't get damaged organs.

As far as I know, corneas and skin can be taken from true cadavers.

So, for the vital organs, there has to be a push of some kind. Otherwise they would never get usable organs.

Some people believe that there is such a thing as true, whole brain death--cessation of all functions of all parts of the brain, including the brain stem--and that this can be reliably diagnosed. In that case, they are comfortable with taking organs when that diagnosis has been rigorously performed, even though the patient is still breathing with the assistance of a ventilator and still has a heartbeat.

In the case in the main post, as you see, they appear to have pushed it a step further to a patient who was breathing on his own.

Thank you, Lydia. Do you think, then, that the push is from good intentions, to help those patients in dire need of vital organs? I'm just trying to understand the mindset of the doctor slicing into a living body, seeing the common pain signals you've described above and in your previous articles. Does he, or the surgical nurses assisting, just put that out of his mind, content in the knowledge that this person is "dead enough" and those waiting for organs will soon be given a second life? I guess you've described it well enough above, that organ donation has taken on a religious nature, as sacrifices often do.

I think it likely that transplant doctors do believe that the patient is dead. They have been told over and over, and will tell others over and over, the analogy to the chicken running around without a head. They've said it so often that they believe it, evidence to the contrary notwithstanding: That this is just spinal reflex, etc. If the patient actually sat up and started talking, then they'd be freaked out. Short of that, I think they have brainwashed themselves.

It's important to remember too that medicine is one of those hardening disciplines. Even performing heart surgery intended to help the patient takes nerves of steel. Doctors are taught to toughen their nerves and put up with things that other people would be mentally incapacitated by. In a sense that is necessary to their profession. But it also means that when they get their ethical ideas messed up and believe that something is justified that is really wrong, they are in a unique position to be morally tone-deaf. I think this is such an instance.

That is why I believe that in the end the dead-donor rule--even _trying_ to conclude that the donor is dead--will be eliminated, and the transplant profession will accept it. There are ethicists who are already openly pushing for this. For what it's worth, my college-age daughter has told me that several of her secular college classmates in an ethics class were _fully_ on-board with killing "useless" people for organs, without any hint of a dead donor rule. They weren't medical students (that I know of), but it shows where the culture is going.

My own concerns that current donors are not dead can, in a sense, backfire. Society can bite the bullet. This is already happening. There are ethicists who are arguing that current donors are often not dead and that *therefore* we should throw the dead-donor rule out the window altogether.

Rather that than abandon organ donation, to them. It is too important in our society.

When that happens, or if it has already happened in the minds of some transplant technicians (contra my first paragraph), then I think they will just devalue the patient and harden their hearts for what they perceive as the "greater good."

My perception is that doctors and nurses are rarely mavericks. If the profession in their country accepts something, medical students of all kinds are trained from the beginning of their pre-med or pre-nursing college education to accept that prevailing standard, whatever it is. In fact, they are taught to make _that_ a matter of conscience. This is good if the prevailing standard is good and bad if it is bad. Thus, those who can move what is considered acceptable in their country's medical profession in their own preferred direction will exercise enormous control over the practicing medical people, who will, in a sense, "outsource" their consciences to the "standard of care."

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