Archives For organ donation

Doctors who want to change the conversation about brain death.

Dr. Robert Truog, Harvard Medical School and Boston Children’s Hospital  and Dr. Frank Miller, National Institute of Health

We seek to change the conversation about brain death by highlighting the distinction between brain death as a biological concept versus brain death as a legal status. The fact that brain death does not cohere with any biologically plausible definition of death has been known for decades. Nevertheless, this fact has not threatened the acceptance of brain death as a legal status that permits individuals to be treated as if they are dead. The similarities between “legally dead” and “legally blind” demonstrate how we may legitimately choose bright-line legal definitions that do not cohere with biological reality. Not only does this distinction bring conceptual coherence to the conversation about brain death, but it has practical implications as well. Once brain death is recognized as a social construction not grounded in biological reality, we create the possibility of changing the social construction in ways that may better serve both organ donors and recipients alike.

American Journal of Bioethics, 14(8):9-14,2014

Both doctors have written extensively about brain death and ethics in organ donation. I have quoted them many times here as they became famous for their term brain death as a legal fiction and brain death is as good as dead. 

“Although it is clear that brain death is not the same as death, moreover, brain death does correspond to the loss of an ability to interact with others and the world in meaningful ways. With consent for withdrawing therapy and a separate consent for organ donation, it is reasonable for brain-dead patients to serve as organ donors, and it may even serve to leave behind a valuable legacy of having saved the lives of others.

It makes sense ethically to employ a status legal fiction to ensure that brain-dead donors can be treated as dead for the purposes of vital organ donation and withdrawal of therapy.”I radically disagree with them on their theory of being able to withdraw life support to donate organs.”

Although they have argued for exposing this legal fiction they have also said brain death and true death should be treated the same for harvesting organs.

Human BrainI applaud them in understanding that brain death is NOT true death and wanting to expose the legal, medical fiction of brain death. 

Dr.Alan Shewmon, UCLA, and former advocate for brain death who has changed his mind, compiled 150 documented cases of brain-dead patients whose hearts continued to beat, and whose bodies did not disintegrate, past one week’s time.

In one remarkable case, the patient survived 20 years after brain death before succumbing to cardiac arrest. Dr. Shewmon has successfully documented and published on somatic integration of the human body and all its functions. 

LIFE processes after pronouncing brain death

  • Cellular wastes continue to be eliminated, detoxified, and recycled.
  • Body temperature is maintained, though at a lower than normal temperature and with the help of blankets.
  • Wounds heal.
  • Infections are fought by the body.
  • Infections produce fever.
  • Organs and tissues continue to function.
  • Brain-dead pregnant women can deliver a baby.
  • Brain-dead children mature sexually and grow proportionately.

Full text of Truog and Miller recent paper

Flickr photo credit

This Happens Everyday When People Sign The Organ Donor Card

Robert Strain This is the story of Barbara Radcliffe from Vermont, who recently lost her son, Robert Strain. He most recently was employed as an instructor with the McKinney High School Color Guard as a choreographer. Barbara posted her story on a Facebook group I belong to called Organ Donation Exposed.  

I have only corrected a few misspelled words.

 
“My son moved to McKinney Texas for a job teaching color guard at the high school there. He was 35 years old. He left Vermont at the end of May 2013 and drove to Texas with his new girlfriend of three months, they never lived together before they went to Texas.He was in Texas eight days when an ambulance was called to his residence and he was transported of the medical center of McKinney. His girlfriend told the EMS that it was an asthma attack.

I am not sure if his heart stopped in the ambulance or the E.R. from lack of oxygen but I was told they took forty minutes to resuscitate him.

As i write this I begin to feel my heart race, my throat close, my hands shake. It is so hard to explain what happened yet i live it everyday.

I will begin with some facts. My son was transported to the hospital on a Wednesday.I was not notified until Friday night around 6 p.m. I flew to Texas as soon as i could on Saturday.

When I arrived at the hospital I was met at the elevator by a chaplain who’s first words to me were my son’s girlfriend (now being called his fiancée) did everything she could by calling the ambulance… O.K. I want to see my son. I knew nothing of his status.

Then I walked to his room following the Chaplain, my son’s girlfriend, and the girlfriends brother.The four of us enter my son’s hospital room in ICU. As I see my son for the first time hooked up to machines the chaplain again tells me what a good job Marisa (the girlfriend) did by calling 911.

She says nothing. nothing at all.

Then I begin to ask a lot of questions and it dawns on me that they have already decided to take my son off life support. The brother whom I have never met before and did not know my son says “He will always be with us”.

I am in total shock.

I tell them no this will not happen and the Chaplain tells me i might not have a choice. I beg to speak to a doctor or a nurse and I ask the chaplain to leave.

I sit and hold my son’s hand.

I do not get to speak to a doctor until Monday.The prognosis is brain death.

I also speak to the hospital administrator who almost immediately starts asking me to take my son off life support. It seems i have ruined all their plans. the hospital administrator is worried about the bill and she mentions it frequently. And she wants me to give a exact time and day to remove my son from life support and asap.

I have to fight to declare myself my sons directive….As his live in girlfriend of eight days has assumed that role including giving her income to make my son not eligible for Texas Medicaid . The hospital does not even have my sons ss number. I inform them my son has Vermont Medicaid and they tell me no they do not accept that…and my son is considered indigent.

So before I arrived at the hospital the girlfriend and the hospital administrator have decided to end my son’s life. Because they decided he had no usable insurance. This in two days time. And she is already planning to leave Texas with my sons belongings. When I mention this to the hospital administrator she is surprised and tells me now she considers them “broke up”.

Now I know this story is getting a little long and I am trying to make it as comprehensible as possible but it is so crazy and the horror keeps growing. (even now) I am very confused and I reach out to the Brain Injury Association of America to try to educate myself on brain injury procedures, and my sons rights.

Every few hours the hospital administrator is asking me to set a time and date to remove the ventilator. This is torture. This is excruciating to keep asking me for a time a day to remove my son from life support.

To me my son is showing signs of life; he is reacting to pain. He has a gag reflexes. He is over breathing the ventilator. His heart goes faster when I speak. I am told the hearing is the last to go. And I wonder if he has heard everyone. Is he in pain? I want to bring him home to Vermont.

I am told this is not even a remote possibility

I ask for more tests. I need more information. they say they will do a blood flow test and a apnea test.

I ask the hospital administrator to walk me through the steps to take my son off life support while i am waiting for the blood flow test to come back. She does. We do this several times.

Now the blood flow test comes back and they tell me my son is brain dead. Devastation beyond what I ever thought possible.

I am in a daze when I mention to someone my son wanted to be an organ donor. Or did someone ask me? I’m not sure. but next thing that happens is I am told to wait for the Southwest Transplant Alliance to show up.

Stupid me.

I thought what was going to happen is what I was told over and over… about the hospital administrator saying over and over about the ventilator being removed and she said my son would take guppy breaths and then pass on. This did not happen.

Now i am informed by Southwest Transplant Alliance that it takes 20 to 30 hours of testing for matches and when they were done that’s when my son’s life would end. WOW. I do not want this for my son but I am trying to honor his wishes and I am promised that Southwest Transplant Alliance would get me all my son medical records.

So after all the painful hours of being forced to decide the time and day of death ..they never mentioned procedures for organ donors …..it’s not even my choice to decide. After all the tormented hours of being forced to decide valuable time taken from me and my son for NOTHING.

I would like to sue the hospital administrator for not really knowing what she was talking about and forcing me to make a decision that is ultimately out of my control for not going through all the procedures when I asked over and over again.

So now here I am watching my poor son being worked on…not to help him but to harvest his organs. Hours go by each minute HELL.

I wonder if he feels pain. They say no but who knows really????

I am asked to leave the room a few times and i cringe at the thought of what invasive thing are they doing to him.

I feel so bad for my son he is like a rag doll at their disposal. It’s not dignified at all. I want them to stop. I leave the hospital throwing up.

I am giving updates by phone. I am told they have a heart recipient.

I can’t do this. but I feel it’s too late to stop… like a run-way train.

The next call I get I expect to be told what was going happen, I expected them to say “we are on our way to the operating room and I expected to get to see my son and tell him how proud I am of him and how brave he is.

Oh my god I never learn. This is not what happens.

I am whisked into a room with three Southwest Transplant Alliance workers (I notice there not smiling as much as before)and a doctor from the hospital and a nurse from the hospital. I am horrified .

This is the 11th day.

The doctor starts by telling me my sons prognosis has not changed he is almost defensive.

What is it?

“We have to tell you that we did the apnea test and your son breathed on his own for some time and we had to put the ventilator back in and we need you to sign another paper as there will be no heart transplant just his liver and kidneys.”

Oh Jeez please what is going on?

Don’t get me wrong I did not want any of this. NONE OF IT so what I am thinking is that my son was not brain dead not dead when they were testing him for organ donation.

Someone please give him pain medicine please stop touching him. The complete horror I feel makes me sick even today what did we put him through????? He did not deserve this he is a good person a giving, loving person and I failed him.

I sign the papers just to let my son have peace and now I will always have second thought on all my decisions.

I would like to sue Southwest Transplant Alliance and medical center of McKinney Tx for not following procedure by not doing a apnea test before declaration of brain death ……also Southwest Transplant Alliance lied to me ………they never produced the medical records they promised or any paper work at all including the paperwork I signed.

I never received copies even though I have requested them over and over I just get the form letters they send everyone with wishes of peace.”

This is what happens when your child signs the organ donor card.

According to Chief of Trauma at Temple University Hospital and Residency Director of that schools General Surgery Dr. Amy Goldberg, “Families are never sorry that they donated. They are at times sorry they missed that opportunity.”

I don’t think so, ask Bernice about Brandon or Carolyn about her daughter Melissa.

I am so sorry for your loss Barbara. Thank you for allowing me to print your story.

Presumed Consent

Organ donor keeperPresumed Consent is when the State “presumes you WANT to be an Organ Donor.”

Instead of a person walking into a Secretary of State’s office’s and signing a donor card to donate their organs, a person must sign an OPT-OUT form.

Pennsylvania, State Senator Don White, believes human organ donation and transplantation is an issue that deserves more attention.

In light of this he has introduced Senate Bill 1305 and Senate Bill 1306

Senate Bill 1305 would redesign driver’s license and identification card applications to include the question “Do you wish to have organ donor designation printed on your driver’s license?”

“This question, although it is required to be asked, is not printed on all driver’s license/identification forms,” White said. “My bill would also require a phrase to be added to all forms stating that Pennsylvania strongly supports organ and tissue donation because of its life-saving and life-enhancing opportunities.”

Senate Bill 1306 would create a “presumed consent” or “opt-out” system which is in contrast to Pennsylvania’s current “opt-in” process.

Under the legislative change, all applications for a driver’s license or identification card would state: “You are automatically deemed to have consented to being an organ and tissue donor. If you do not want to be considered an organ and tissue donor, you must elect to not be included on the organ donor registry by inserting your initials on the line below.”

Applicants will still have a choice in the matter, White said. But when faced with the question, when required to take a proactive step not to participate, he believes more people will choose to help others by becoming an organ donor.

Informed Consent

People need to be informed on what happens to them when they sign the donor card.

I believe more people would OPT-OUT and never sign an organ donor card, if they were told the truth. If the United States mandated informed consent then you would know what truly happens to you during the harvesting. Brain death is the cutting open of a seriously injured but a live person. They are not given anesthesia so they FEEL the pain. If people understood that if you were truly dead, and laying on the side of the road, their organ’s would NOT be available to transplant. Organ’s need to be vital to be transplanted into a recipient.

 

 chairs at secretary of state Quite frankly I already HATE to go in the Secretary of State in Michigan, the clerks all wear badges,”Would you like to be an organ donor”? And there is a sticker on every chair.

Success Stories

I hope stories like this one about Jimi Fritze, who heard everything the doctors were saying when they wanted to take his organs and he was in a coma.

I am reading a book now by Kate Adamson, Paralyzed but not Powerless.

Kate, at a young age of 38 had a stroke like my son Jamie. Her husband an attorney would not agree to pulling the plug and she recovered. Kate is now an international speaker. Like Kate and Jim many people will WAKE up if given time.

I’m not gonna lie, this story and book were really hard for me to read as I thought about Jamie and what he was hearing when the organ requester at Vanderbilt was at the foot of his bed talking about how many organ’s they could get.

At least I ran the lady in blue out…more on that in my soon to be released book.

Call your Senators and tell them to NOT support these two bills, Senate Bills 1305 and 1306.  If it passes in Pennsylvania, every other state will follow suite.   STOP the legal killing.

More success stories on people waking up from brain death declarations.

Tell me in your comments, if you think Presumed Consent or Informed Consent is the way to go.

Dr.Richard Nilges

In May of 2013 I was researching Dr.Richard Nilges. I had just read a  book called Beyond Brain Death, the case against brain based criteria for human death. Twelve authors contributed to this book published in P & M Philosophy and Medicine. I came across his son’s blog and an article he had written on the recent passing of his father. I contacted him and told him I had just finished reading his dad’s multi-author book and how much I appreciated his authenticity of his chapter. I asked if I could have permission to print it in it’s entirety and he said, “as his son, I say yes.”

I have highlighted and changed some of the formatting for easy of reading and to highlight in my opinion things he said that are too good to miss.

 

The Death of the Brain (page 38)

Richard G. Nilges, M.D.; copyright 1990

“Evil committed for a good purpose remains evil.”
“Even when it succeeds?”
“Above all when it succeeds.”

Victor Hugo, History of a Crime (1877)

What is the brain? A structure, yet it is far more than a structure. It is incredibly complex; its functions could be multiplied toward infinity, perhaps beyond. It is an inward mirror of the real self, or the real self mirrored in the mirror; it is a jelly of thought- capturing webs in the cranial crucible. Who can describe the eloquent complexities of our brains, those universes within our heads?

Yet what is the brain compared to its epiphany, the mind. And the mind? The shimmer of whispering moonlight on darkly rippling water, a single cloud on the horizon of a summer day, autumn’s demented wind loosening the last of the bronzed leaves, all these are the mind. Without the mind, would they be there? As spectral emanations of the laws of motion and physics, of color, perhaps they would; perhaps not.I now approach the unapproachable. I have already gone too far in speaking even of the mind, according to current reductionistic philosophy. But I would go beyond to the soul, that epiphany of epiphanies. In thirty-three years of practice both as doctor and neurosurgeon, I have treated brains, minds…and souls. But a most reductionistic of materialistic philosophies destroys my trinity by declaring minds and souls null and void, reducing everything we used to call human to the laws of neurophysiology in neuronal nets. With this, the pale hand of death has entered our thinking and our society. And the crassly utilitarian concept of brain death becomes the microcosm of the death of the mind and soul of our society.

For a society should be judged by how it treats its most helpless members. And who are more helpless than the so-called brain dead? Why do I say so-called?

Does not the death of the brain mean the death of the person? I doubt this.

I think the idea of brain death is a manifestation of the simple-minded pragmatism of our society, lost in a philosophy outmoded even a century ago. What is real, what is right, is what works; success justifies pragmatic metaphysics and ethics. We forget basic human rights, we forget ideal essences beyond appearances, we forget souls and lose our own when we simplistically and pragmatically declare people non-persons and brain dead so that their hearts, livers and kidneys can be transplanted into others.

Is the soul, the transcendent ego, or the personality really within the brain? The soul could be the form of the body, as Aristotle claimed and medieval Catholicism confirmed. I fear that somehow we are violating souls yet escaping from the tendrils of their bodies when we practice “organ retrieval” (to use a euphemism of the transplanters) on people who are alive in the sense that their hearts are still beating.

Richard Strauss, on his deathbed, awoke from his penultimate coma and declared that he had just heard the final notes from his Death and Transfiguration: “Dying is just as I composed it in Tod and Verklarung.” Christian mystics have described a “fine point of the soul” while in states of prayerful suspended animation. How many trumpet calls to eternity, how many prayers and even mystical visions have we doctors blunderingly interrupted while “harvesting” (another transplant euphemism) living organs?

I have seen many “brain dead.” They do not look dead. It is true their respirations are passive, the machines breathe for them; but their hearts beat, their blood circulates, they are rosy and warm. The young men are handsome, the young women beautiful, even in their brain deaths. Such a person can be declared legally dead, and as a “prime donor candidate” the vital organs can be transplanted.

The public must understand–and this point is too often glossed over the transplanters and their apologists–that brain death is not about turning off the ventilator; it is about continuing the ventilator to take organs.

The doctor writes on the chart that, according to accepted medical criteria for brain death, this person is dead. The body (or is it still the person?) is then carted to surgery with the ventilator going, the heart beating, the skin warm and pink. The natural circulation of the precious vital organs must be preserved till the last possible minute. In surgery a paralyzing agent without anesthesia is administered, then the vital organs are removed while the heart still beats–till it is removed. Then there is no doubt that the person is dead; the soul has fled.

I have tried to ease my conscience by using the strictest possible criteria for brain death: at least forty-eight hours of repeated observations that there are no functions of the brain, no signal, even a faint reflex, that this brain is trying to make to me, and two “flat” electroencephalograms (EEGs) separated by twenty-four hours and both showing “electrocortical silence.”

Yet there are “accepted medical criteria” for brain death requiring no EEG and less than six hours observation. The “accepted criteria” evaluate only brain stem reflexes and the absence of breathing. This should be frightening to all of us. Mistakes might be made with such short periods of observation; barbiturate intoxication can simulate brain death and could be missed. Possibly even more important, this desire to assert oneself, to play God and decide who shall die and decisively pronounce death in a hurry brutalizes my profession. Where is pity, where is love, where is even the basic doctor-patient commitment in those “doctors” who act as though they have pumps for hearts and ice water for blood?

At considerable expense our society allows convicted murderers years for appeals from death sentences. We often do not give our innocent brain dead even forty-eight hours to make as sure as humanly possible that there is no chance, even a one-in-ten-million chance, the last infinitesimal chance there may be some flicker of nerve cell activity in the depths of their brains, a spark of life somewhere in the labyrinths of their minds.

The push is for the pragmatically useful, the rapid estimation of brain death. The fresher the organ, the less the time since the brain injury or stroke, the greater the chance for a successful transplant. And the rights of the individual donor be damned! Only a faceless “society” and the well-funded recipient patient, who needs the organ for further “useful” existence, are important. Furthermore, the callous comment has been made by younger members of my profession that “dead people are less trouble.” It is far more difficult for the medical and nursing staff too maintain a brain dead or potentially brain dead patient in the intensive care unit unit for forty-eight hours than to declare death in less than six hours, while the patient is still in the emergency room.

“Death is the great economy in health care,” reducing the problem to the bottom line of money saved, when the going rate for intensive care is over one thousand dollars a day.

But this is what I mean by the brutalization of medicine, the loss of the soul of what should be a most noble profession of healers, not killers, the final solution by the reduction of everything to the bottom line of effort, time and money saved.

Thank you, Edward for allowing me to publish this chapter. In a few days I am going to excerpt some of his thoughts in the chapter he wrote on Beyond Brain Death, including why he left medicine earlier than he planned.

Michigan fansToday is the third annual Be a Hero Blood and Organ Donation drive at the Big House.

The Be a Hero at the Big House event is sponsored by Wolverines for Life, a collaboration between the U-M Health System, Michigan Athletics and other University of Michigan groups, schools and departments, along with the American Red Cross, Be the Match/National Marrow Donor Program, Gift of Life Michigan and the Michigan Eye-Bank.

Last year, the donor drive drew more than 800 people who donated 230 pints of blood. The event resulted in 110 people joining the organ donor registry and 96 being screened as potential donors.

This is the beginning of the fall challenge between the Ohio State Buckeye’s and the Michigan Wolverines. Last year Michigan won in the organ donation sign ups and the Buckeyes’ won in the blood donation.

Can I say, this is one challenge I hope Michigan loses ?

  • Will the students and community be given any information on what the definition of death is? Definition of death 
  • Will they be informed that if they are dead in the sense we all think of it…true death…their organs can not be harvested? The organs must be vital or alive to be transplanted.
  • Will they be told that death must be pronounced before they take their organs according to the dead donor rule?
  • Will they be told that brain death is a legal medical fiction devised to get more organs from severely injured patients and not dead ones?
  • Will they be told that if they are considered brain dead that they will be cut open down the middle of their bodies without any anesthesia?

NO

They will be told that they are giving the gift of life, they will be told that by donating “after” they die they will help another person live?

Dr. Robert Truog, associate professor of anesthesia at Harvard Medical School, published in the Hastings Center Report of January-February 1997  “Is It Time to Abandon brain death?”

“there is evidence that many individuals who fulfill all of the tests for brain death do not have the ‘permanent cessation of functioning of the entire brain.”‘ The concept of brain death is “incoherent in theory and confused in practice,” Truog continues, and so he recommends a return to the traditional definition of death, based on cessation of respiration and circulation rather than neurological criteria.

Brain death is a legal fiction created to support the need for more organs. Legal in that it is the law,fiction in that it is not true.

Regardless of the UDDA which defined death in the United States Dr. Alan D Shewmon has compiled a list of life processes that brain-dead patients continues to exhibit: 

  • Cellular wastes continue to be eliminated, detoxified, and recycled.
  • Body temperature is maintained, though at a lower than normal temperature and with the help of blankets.
  • Wounds heal.
  • Infections are fought by the body.
  • Infections produce fever.
  • Organs and tissues continue to function.
  • Brain-dead pregnant women can deliver a baby.
  • Brain-dead children mature sexually and grow proportionately.

Richard Pietroski, CEO of Gift of Life Michigan and Chair of the UNOS Organ Procurement Organization Committee said 86% of all deceased organ donations last year in the United States came from brain dead patients. The remaining 14% were donors after cardiac death (DCD). CNN Quote

Nope, I won’t be at the Big House today signing up to donate my organs, but hundreds probably will and never know the truth of what they give up when they sign the donor card. 

 

GO BLUE!  (Except in this case)