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Transplant community outraged over inuendo-laden article in WSJ questioning brain death protcols.

"The last time I renewed my driver's license, the clerk at the DMV asked if she should check me off as an organ donor. I said no. She looked at me and asked again. I said, "No. Just check the box that says, 'I am a heartless, selfish bastard."

Those 49 carefully chosen words written by author Dick Teresi in an article published in the March 13 Wall Street Journal entitled What You Lose When You Sign That Donor Card touched off a firestorm of criticism from organizations and professionals in the transplant community including the editor of Transplant News (See letter-to-the editor from Transplant News on page 3). A colleague of mine who is also in the transplant field who brought my attention to the article said to me: "This guy just killed some people."

The article was published to coincide and promote the publication of Teresi's latest book The Undead: Organ Harvesting, the Ice-Water Test, Beating Heart Cadavers--How Medicine is Blurring the Line Between Life and Death.

Teresi's choice of words, examples and innuendo are clearly meant to strike fear in the heart of the reader by suggesting there is something very, very wrong about the nation's organ and tissue donation programs and that the system for declaring brain death is seriously flawed and not to be trusted.

Consider the following examples and his choice of words:

* "The exam for brain death is simple. A doctor splashes ice water in your ears (to look for shivering in the eyes), pokes your eyes with a cotton swab and checks for any gag reflex, among other rudimentary tests. It takes less time than a standard eye exam. Finally, in what's called the apnea test, the ventilator is disconnected to see if you can breathe unassisted. If not, you are brain dead. (Some or all of the above tests are repeated hours later for confirmation.)"

* "I like my dead people cold, stiff, gray and not breathing," says "Dr. Michael A. DeVita of the University of Pittsburgh Medical Center. "The brain dead are warm, pink and breathing."

* "It is possible that not being a donor on your license can give you more bargaining power. If you leave instructions with your next of kin, they can perhaps negotiate a better deal. Instead of the usual ice water-in-the-ears, why not ask for a blood-flow study to make sure your cortex is truly out of commission?"

Finally, Teresi never once uses the word "recovery" when referring to the actual donation process in the hospital preferring instead to use the word "harvest" or "harvesting" five times.

The response to Teresi's book has been muted for the most part. Many transplant surgeons I spoke with felt they might make things worse by mounting a vociferous campaign and the major transplant organizations appear to be taking the same approach. However, there were exceptions.

Perhaps the best example of a measured and very informative response was provided by National Public Radio (NPR)'s March 19th Fresh Air program hosted by Terry Gross. Her guests were the aforementioned Dick Teresi, and Richard Freeman, MD, chair of the Department of Surgery at Dartmouth Medical School, a board member of the Organ Procurement and Transplantation Network (OPTN) and a member of the board of trustees at the New England Organ Bank.

Here are a couple of excerpts from the hour long program. A link to the entire interview can be found at the end of this article.

Here is one exchange between Gross and Teresi:

Gross: "If a person is declared brain dead, what are the legalities of either taking them off or leaving them on life support and who determines that? Is it the doctor or the family or the papers that the person has left behind sharing their wishes?"

Teresi: "At this point, as George Annis, a lawyer who has studied this, says, 'you're in or you're out. You're either alive or you're dead. And if you're proclaimed brain dead, then you have lost all your constitutional rights, and they can turn the ventilator off forever, or they can keep it going, and there's no time limit. There's this problem (which) is that you're dead. You're legally dead. It doesn't matter that you're still breathing with a ventilator, that you're still getting bedsores, that you get diabetes. All these things happen to you after you've been declared brain dead."

Gross: "Your writing and speaking about this is making a lot of people really angry because organ donation is very important, and some people are afraid that what you're saying will discourage people from signing up for organ donation. I think that's a legitimate concern, that what you're saying might scare people."

Teresi: Well, it's a topic that I got into not knowing what I was going to find. I went off to write a book about death per se. What is it from a scientific point of view? I started with a very basic question: How do we tell when a person's dead? That ended up being the entire book because I thought it was a very simple question, and it turns out not be a simple question at all. And my role is that of a journalist, and you don't change the facts to assuage people's feelings."

Gross: then introduced Dr. Freeman: Welcome to Fresh Air. I don't usually talk about myself on the show but I want to start by saying I've always checked the organ donor box on my driver's license and I intend to keep doing that. But in interviewing Dick Teresi, I started thinking about what I don't know about what it means to be an organ donor. That's why we wanted so much to hear from you. What I found most surprising in talking to Dick Teresi was that if you've been declared brain-dead, after you've been taken off the ventilator, you're put back on it so that your body can continue to support the organs you wanted to donate. It seems at that point you're neither fully dead nor fully alive. What state do you call that?"

Dr. Freeman: Well, you're absolutely dead. The removal from the ventilator for the temporary period of time that he describes doesn't have anything to do with it. It's a test that we use to confirm brain death.

Gross: Describe the test.

Dr. Freeman: It's called an apnea test, and essentially, for a short period of time the potential donor is removed from the mechanical ventilation to see if they breathe. And if they don't breathe, they're brain-dead. Their heart may still be beating, (and) is still beating in that they don't breathe, they're brain dead.

Gross: And you can determine that because it's not the brain, it's a certain part o f the brain that controls the respiratory system, and you're not breathing, it means that part of the brain isn't functioning?"

Freeman: It's one of the most primitive parts of the brain, so if that most primitive part of the brain is not functioning, the brain, or any other higher function of the brain, is also not functioning. And that is, you know, the sine qua non for determining brain death."

Later in the interview this exchange took place.

Gross: One of Dick Teresi's points in his book about the blurring between life and death is that a lot of people who give their consent to be organ donors, giving informed consent, because they don't really understand what the process is going to be. They don't understand that they may be declared brain dead and then maintained on a ventilator until their organs are ready to be removed and transplanted. Do you think that should be a game changer for anybody?

Dr. Freeman: No. And I think that should be the reverse. I think if people understand how compassionate and how thoughtful and how caring the organ donation process is, and how it is an essential part of the end-of-life decision-making that needs to on for anybody who is in the situation, actually, I think more people would donate.

Gross: You know, Teresi's attitude is the organ donation people are intentionally keeping this information away from us because they're concerned that if we knew all this we would want to be organ donors.

Dr. Freeman: I'll say he's flat wrong! One, the organ donation community is not intentionally keeping anything from anyone. We want everybody to be as informed as possible about the process and how it happens. And when it does happen, the families who were there, if you're brain dead, you can't feel it. You can't hear it. You can't see it. There's nothing you can do. The process is completely explained repeatedly, and their personnel spent hours with these families going over what the process is going to it's going to play out, what the sequence that we just discussed is going to be, and precisely get them to understand that. And, if the family doesn't wish to proceed, they don't."

In concluding his interview with Gross, Dr. Freeman sums up what it means to be a transplant surgeon, and what people signing an organ donor card are committing to when they sign a donor card or join a donor registry.

Gross: Once a person is declared brain dead and is legally dead, who has the legal rights in that situation in determining what should happen after the death or are you assuming everybody already knows and the decision's been made and that it's all done?

Dr. Freeman: I'm not a lawyer so I don't want to go too far here, but it is their right to declare they want to be an organ donor or not. If they do declare, then the organ procurement organization's role is to assure those wishes are carried out.

Gross: This idea of being on 'life support' even after they've been declared brain dead does seem to blur the line between what we mean when we say life and death and goes to the heart of a very essential--what is the difference between the body and the animating spirit, the body and the soul or the body and personhood, whatever words you choose. And it also raises the question: Does the body want to be at rest after the animating force, or whatever you want to call it, has departed? Is it an affront to the body to be kept in that kind of limbo state? I wonder if you ever ask yourself this kind of question?

Dr. Freeman: The answer is 'all the time,' and not just in terms of organ donation. That's one of the things I find so fascinating and intriguing and wonderful about transplantation. I'm a surgeon so I do the technical things about it. But this really is the heart of the matter--do you believe in life after death? Transplantation is life after death if you think about it. The basis of almost every religion is do unto others as you have done to you. When people agree to be organ donors, it is one of the most life-sustaining, wonderful things people can do."

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By Jim Warren

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Author:Warren, Jim
Publication:Transplant News
Date:Mar 1, 2012
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