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April 27, 2005

More than you ever wanted to know...

Topics: Medical Issues

The circumstances surrounding Teron Francis have prompted much discussion on the diagnosis of brain death and organ donation. In the interest of encouraging factual research and formation of opinions based on documented investigation rather than propaganda, I want to refer all interested readers to this publically available electronic book titled The Nasty Side of Organ Transplanting.

The author is clearly against organ donation. I have managed to corroborate a few of the facts and arguments he presents elsewhere. I learned some very interesing information from this book that at the very least has caused me to question the assumption I've held until now (though with reservations) that organ donation is basically a noble and good thing.

Here are a few of the things I learned:

The very first heart transplant took place in 1967. It was after this transplant that Harvard University set up an ad hoc committee to examine the condition of brain death.

This committee of thirteen neurologists, neurosurgeons, lawyers, philosophers and an anaesthetist decided in August 1968 that death could be proclaimed if a patient failed to respond to a series of reflex tests. They called it the Harvard Criteria of Brain Death Test. This allowed a patient with a healthy, beating heart and fully operating renal and endocrine system to be defined as dead, just like a cold corpse.
This is significant to me because I had previously believed that the determination of "brain death" had become necessary with the invention of ventilators, heart/lung machines and other such equipment.

While some organs, such as kidneys and eyes, may be obtained from a donor who is dead as in no breathing, no heart beat, there are organs, such as heart and lungs, that can only be obtained while the donor remains on life support with the heart beating throughout the harvesting operation. This is something even the promoters of organ donation will admit, though they do not exactly advertise it.

The standards for determining brain death vary widely depending on the location and policies of the hospital, and the diagnostic methods all have issues ranging from inaccuracy to possibly even aggravating brain damage.

Due to the high demand for donor organs and other body parts, there is considerable motivation to accelerate a diagnosis of brain death in an organ donor patient compared to a non organ donor. Physicians attending the brain-injured have reported receiving pressure from the organ transplant teams to declare a patient brain dead.

There have been reported instances of organ donors exhibiting physical fear reactions (increased pulse rate, flailing of limbs) to the organ harvesting process. It has also been recommended that donors be given pain medication during the harvesting.

Medications given to preserve a patient's organs can be harmful to the brain, and efforts to save the brain from further damage can compromise the viability of the organs from a transplanting perspective.

There are numerous issues on the receiving end of an organ transplant. Many recipients do not even survive the surgery. Those who do need to be on immune suppressant drugs to prevent rejection; those drugs make them vulnerable to many other diseases. Receiving an organ transplant has been described as trading one medical condition for another. Often, the survival rate of organ recipients is not better than for those with the same condition that did not receive a transplant.

There is much, much more. I would say that anyone who is considering either donating or receiving an organ should read this and make sure the issues raised are addressed to your satisfaction. I would also encourage more independent verification of the material because if even half of what is written is true, the implications are chilling.

Cross-posted on Powers That Blog.

Posted by powersthatblog at April 27, 2005 1:45 AM


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A doctor has told me this as well: The organ donation organizations employ their own representatives to pressure the relatives to donate organs. These are not employees of the hospital nor, necessarily, medical personnel at all. But they have permission from the hospital to come up to people in waiting rooms and the like and try to convince them to donate their loved ones' organs. This fact disturbed the doctor, as getting the organs is these people's entire concern. They have no other knowledge of the patient or relationship to the family or the patient.

Also, there has now been one actual prosecution in Colorado of doctors for having killed someone by taking vital organs. The prosecutor said he believed they acted in good faith but did not carry out the tests for brain death correctly. A rather odd way of looking at it. AFAIK, this is the only actual prosecution of this sort, but it is worth knowing that even a prosecutor has been convinced in one case.

Posted by: Lydia at April 27, 2005 8:44 AM

Lydia,
Do you have a link or any further information on the story about the prosecution in Colorado you mention? If so, could you please post it here? Thanks.

Posted by: powersthatblog at April 27, 2005 9:27 AM

Here's the link to the article by Wesley J. Smith. This is the article I was thinking of:

http://www.nationalreview.com/smithw/smith200410200849.asp

Posted by: Lydia at April 27, 2005 1:46 PM

This is all really scary stuff!! I have a personal story from my own family. My father was on dialysis for many months, while waiting on the transplant list, and eventually a donor kidney came up. He was adamant he wanted a cadaver kidney, and not one from a living recipient in the family. God now I'll have to worry if the donor was really dead. We were told he was a brain dead motorcycle accident victim from one state over. If these zealous organ harvesters even asked people on recipient lists, I'm sure almost all would say not to kill people over it!!

====

On another point --- while receiving a transplant could be considered trading one medical condition for another, taking some daily pills for immune surpression is a VAST quality of life improvement over many hours in either hemodialysis or CAPD (home pericardital dialysis). So I wouldn't necessarily agree that trading one medical condition for another is just an equal trade.

On the other hand, after a couple of years of this vast improvement, my father's immune supressant drugs caused a big nasty deadly lymphoma to grow on his leg. The doctors removed him from the immune supressants, and his own immune system was able to re-start and kick the lymphoma completely. This was back in the 90's, so he's now a long term cancer survivor. His doctor wrote a paper about his case. However, at the time, my father did lose the kidney, and he is no longer a candidate for transplant because he is no longer a candidate for immune supressants. Yes, he's been on dialysis ever since.

====

My point is, we absolutely don't want people hurried into death just to get their organs. But we can't easily blow off organ donation as NOT saving lives. My father lives now by dialysis, and there are artificial hearts in development. But there is no dialysis for liver failure.

=====

So now, we face issues about cloning for organs... human ears grown on mouse backs, etc...

Posted by: Suzanne. at April 27, 2005 2:19 PM

I re-read the Smith article and must make a correction: The county coroner and the attorney general declared the death a "homicide," for the reason I gave, but the article doesn't actually say that they decided to go ahead and prosecute the doctors at the hospital where the organs were procured. Maybe this was because they felt sorry for them--good-intentioned folks that they were. I'm not really being totally sarcastic here, just saying that this is, if nothing else, a case of gross negligence. But I did need to correct my statement that they went ahead and prosecuted. The article doesn't actually say that.

Posted by: Lydia at April 27, 2005 2:25 PM

I have more information concerning the organ donation case in Colorado that has been mentioned on this thread. It turns out the DA reviewed the case and the report was amended to say the man died of a self-inflicted gunshot wound to the head. I have posted about it and included links to some news coverage here:
http://powersthatblog.blogspot.com/2005/04/update-on-colorado-organ-donation-case.html

Posted by: powersthatblog at April 28, 2005 9:02 AM

Thanks, Powers. I've read the report about how there supposedly were tests on this guy in Colorado, how the coroner was reprimanded, and so forth.

I'd like to hear what the coroner says in his own defense. E.g. What were his reasons for the conclusion of homicide? Was it really just a mistake based on not reading enough of the medical records, or was there something more to it?

Obviously, if this is either a) a mere mistake or b) just a "protest" against organ donation or the concept of brain death or something like that by the coroner (so that he would have done this no matter what tests they had done), then it does not provide _additional_ evidence that organ donation is dangerous. That is, it can be discounted as extra confirmation and we will be left with the problems you have already mentioned--variable criteria for brain death, possible problems with the very physical possibility of brain death, evidence of pain and reaction during organ donation surgery, evidence that families and doctors are rushed and pressured, evidence that organ donors receive different care from non-donors, and so forth. These are all still major problems, even assuming vital organ donation to be legitimate intrinsically. But the independent relevance of the Colorado case is now called into some question.

Posted by: Lydia at April 28, 2005 2:08 PM

Wow. This....

"There have been reported instances of organ donors exhibiting physical fear reactions (increased pulse rate, flailing of limbs) to the organ harvesting process."

...is already the more than I ever wanted to know, but everything that I should need to know...

And this....

"It has also been recommended that donors be given pain medication during the harvesting."


These are not just indications.
This is real fear. Real pain.

I don't want to hear them discussing my dissection right before they do it...and then feel that knife start the dissection while they believe me to be blissful......

Posted by: juleni at April 28, 2005 4:42 PM

I agree that the article has some inaccuracies, especially about kidney transplants. Since kidneys are one of the organs that can be used for some time after death, I hate to see kidney transplants badmouthed. There's a hereditary condition in my family where, with no other symptoms, a person's kidneys simply stop working around the age of 30-50. Not polycistic kidney disease, either--the doctors don't know what it is. But my mother's grandmother, father and all his siblings died of it, and so far a little over half the people in her generation have it. My mother has it and was on dialysis for several years before receiving a kidney transplant. That transplant has given her a new life.

One thing a lot of people don't know about dialysis is that not only is it time-consuming to the point where you don't have much of a life outside of dialysis, it does carry a lot of health risks and hemodialysis is quite painful. Also, especially if the person is young when their kidneys failed, kidney dialysis doesn't remain effective forever. It doesn't clean all the toxins out of the blood and it becomes less and less effective after a while. The life expectancy on dialysis is shorter than with a transplant if the person is a good candidate for transplantation and a good match is found.

My mother was getting to the point where kidney dialysis was getting less effective and she was steadily declining, and she was actually starting to think about just stopping dialysis and dying when a kidney became available for her. It was such a perfect match that she's had no problems with rejection and the kidney started functioning before she even got off the operating table.

Yes, the anti-rejection drugs do suppress the immune system and cause some side effects, but my mother is so much happier and healthier than she was before the transplant, and I have no doubt that without it there's a very good chance she wouldn't be alive today. Her general health, energy levels, etc. are ten times better than they were on dialysis and we all believe that kidney transplant gave her back her life.

Posted by: purple_kangaroo_Angela at April 28, 2005 11:11 PM

Angela,
Thanks for your input. I don't have the links right at my fingertips to back this up, but in my reading I have learned that kidneys are indeed one of the organs that can be taken from someone who is dead in the traditional sense (not on any sort of machines, no breathing or heartbeat). My understanding is some people do quite well with a kidney transplant and others don't take to it as well. I'm glad it has worked out well for your mother.

I can't speak for everyone, but I think a lot of us here are OK with organ donation in principle, provided there is no doubt that the donor is dead when the organs are taken. What makes us uncomfortable is the harvesting of some organs that can only take place when the donor is still breathing and the heart is still beating.

Posted by: powersthatblog at April 29, 2005 12:09 AM

I believe you're right, thepowersthatblog, and that kidneys are one of the organs with the longest "shelf life"--that can be used for quite some time after a person has been dead. So they really can be used from a true cadaver.

I am listed as an organ donor myself, but I certainly don't want to have organs taken before I'm really dead. Once I'm dead they can feel free to use whatever will be helpful; it's not like it will matter to me at that point what's done with my corpse. I would be very happy, though, if after my heart has stopped beating and there's no more function, my kidneys and other organs could give life, sight or health to someone again.

What I was objecting to in the article "The Nasty Side of Organ Transplantation" is that it made it sound like many transplants (and it repeatedly singled out kidney transplants in particular) were only for convenience sake or to make money for doctors. It repeatedly said it was exchanging one disease for another and made it sound like life with a transplanted organ was probably worse than life would have been without the transplant. I wanted to clarify that kidney transplants in particular are not the way they are portrayed in that article.

It made it sound like dialysis was just as good or better of an option and said several times that kidney transplants are only for convenience sake and don't actually save lives. But the truth is that dialysis doesn't do a completely adequate job and just makes the process of dying from kidney disease much slower--dialysis cannot fully replace kidney function. It is very, very hard on your body, as well as uncomfortable and time-consuming, and really only slows the disease process. People still die of kidney disease on dialysis . . . dialysis does keep them alive longer but still leaves them sick to varying (and increasing) degrees. Most people on dialysis are still quite sick from the kidney disease itself, as well as frequently having complications and pain from the dialysis process.

So it's not just exchanging one disease for another that is equal or worse the way that article described it, and it's not an unecessary procedure done for the sake of the time it saves in not having to have dialysis or the money it saves insurance companies--it is a significant improvement in health, life expectancy and quality of life, and it does in fact save lives and often allows people to live years longer (and those years much healthier) than they would have lived on dialysis when a kidney transplant is successful.

Another thing that may be missed in a lot of the studies and info. is that the success of the transplant is largely dependent on the recipient themselves--how well they follow instructions and take care of their new organ. A big part of the reason my mother's transplant has been so successful is that she is so conscientious about taking her medicine, avoiding the things she's not supposed to eat, not taking medications that are hard on the kidneys, etc.--often when an organ fails it's because of "user error" and people not taking care of their organs, although of course there are sometimes unavoidable problems as with anything else.

I can't speak for the other types of transplants, but I know that kidney transplants are not done unless it is likely that the person's quality of life and life expectancy will be significantly increased. You have to have a certain level of kidney failure and have to show that the transplant would be a significant improvement over your current state of health before you get on the list at all, and people who are at a point where the dialysis is no longer effective for them will get priority I'm sure.

People on dialysis will most likely eventually die of kidney disease after years of being very sick from it, so being able to have 5 or 15 really good years of having health and energy again after feeling rotten and being really ill for so many years is nothing short of a miracle. So taking the chance of then perhaps dying of some other illness due to the lowered immune system is worth the risk for many recipients (and, despite the way that article made it sound, the doctors explain the risks and possible complications very thoroughly before a person makes that decision). Even if the recipient dies from cancer or pneumonia a few years down the road, it's that many more years of much better health and possibly several more years of life itself than they would have had otherwise.

Posted by: purple_kangaroo_Angela at April 29, 2005 3:07 AM

Angela,
Thank you so much for sharing your story and for so articulately pointing out what may be a weakness in this article--un unfair criticism of kidney transplants. This is the sort of reasoned discussion I'm really interested in. I republished your thoughts in my blog here: http://powersthatblog.blogspot.com/2005/04/kidney-transplants.html because I believe they add a lot to the discussion of the ethics of organ transplants.

I believe there is some good information in "The Nasty Side of Organ Transplanting," which is why I posted it here, but like most pieces, it doesn't necessarily tell the entire story.

Thanks again for sharing.

Posted by: powersthatblog at April 29, 2005 9:36 AM

Hey, Powers--

I feel like I'm going senile. Wasn't it on B. f. T. that I saw the lengthy quotation from (or a link to) the whole story about the British doctor that wants anesthesia for organ transplant?

I have quotes from this whole thing in my head but can't find the link on here. The guy (British doctor) said that he would carry an organ donor card if they used anesthetic. He talked about how it "upsets the nurses" when the patient flails around when they go to take the organs, when the heartbeat soars. I'm _sure_ it was a link on either a main post or a thread on here. Then elsewhere in the article another doctor said he doesn't know what the guy is talking about, has never seen this happen. Does this ring a bell? Can you re-post the link if so? Thanks.

Posted by: Lydia at April 29, 2005 7:52 PM

Okay, I think I found the link myself, although I still can't figure out where I saw it first. _The Nasty Side_ talks about this guy (Philip Keep), but they don't have all the quotes I've seen. Here's the BBC piece that I think I originally read on pain/anesthesia:

http://news.bbc.co.uk/1/hi/health/886947.stm

And here's another one that quotes from the same editorial in _Anesthesia_ journal and mentions rising blood pressure and heart rate:

http://www.medicalpost.com/mpcontent/article.jsp?content=/content/EXTRACT/RAWART/3630/70B.html

The whole editorial doesn't appear to be available on line, only other articles that quote it, but it's good to have these links as they are not to what could be called "biased" sources.

Posted by: Lydia at April 29, 2005 9:53 PM

Thanks, powersthatblog . . . I appreciate your being willing to tell both sides of the story. I expect some of the point I made apply to other types of transplants besides kidney transplants, and that the claims in the e-book about the minimal success and relative worthlessness of transplants in general are exaggerated. For instance, it spent quite a bit of time talking about statistics regarding various types of transplants and ended up coming to the conclusion that there's not nearly as much benefit to people who are not critically ill and desperately needing the transplant anyway.

That seemed like kind of a "duh" thing to me--with the way transplants are limited and the strict rules for getting on a transplant list in the first place and then for prioritizing who gets one first, I think a lot of the scenarios described in the e-book (like people getting heart transplants when they're not actually likely to die without one) probably happen rarely if ever.

Posted by: purple_kangaroo at April 30, 2005 1:56 PM

Cornea transplants are also done on a cadaver. This I know firsthand.

Have to say I am a bit more nervous about having "organ donor" on my driver's license now. Can I add a * after it with a postcript, ** only in the event of actual, natural, brain death** ? Man, what a scary world we live in.

Posted by: I hope at May 2, 2005 11:51 AM