Archives For Informed consent

Dead Enough? Organ Donation

Please don’t think I have forgotten about the horror of harvesting organs.

I came across this article and post from The Fifth Estate filmed about Canada but it is EXACTLY the same in the United States. In fact the United States was/is the leader and sets the standard for all other countries. In fact is was at Cleveland Clinic that first started using the Donation After Cardiac Death or DCD. 

Across the country, physicians involved in organ donation must adhere to what’s known as the ‘dead donor rule’. It seems simple – organs cannot be procured until after the donor has died.

EPISODE SYNOPSIS : It’s a question you might think medical science would have answered long ago – when are you dead? But in “Dead Enough” the fifth estate explores how the standards for when and how people are declared dead can vary from province to province and even from hospital to hospital. Host Bob McKeown looks at how, in the rush to meet the need for life-saving organ transplants, some doctors are worried that we may be pushing the ethical boundaries.

In the documentary Dead Enough, The Fifth Estate shares the stories of two families who both faced difficult decisions about organ donation, because their loved ones were not expected to survive severe brain injuries.

Sharon Thompson Daughter

When her daughter was critically injured and paralyzed in a car crash, for example, Sharon Thompson was at her bedside in a Calgary hospital around the clock.

Thompson says she was approached to consent to organ donation, and asked to consider taking her daughter off life support.

“When people are in an emotional state, I don’t think that’s the time to be asking those questions. Because the emotional roller-coaster we were on for, I would say, at least three of those six weeks … that’s not a great time to be having to make that decision too, because you’re not thinking,” she told McKeown.

Thompson chose not to take her daughter off life support, and Brandice Thompson made a remarkable recovery.

Shane Becker

Shane Becker, in Vancouver, BC.

His family was planning to donate his organs after the 25-year-old college student suffered a fall that severely injured his brain.

When his mother arrived at the Vancouver General Hospital, she said she was told that her son’s brain would soon stop functioning, and he would not recover.

As she was struggling with the news, she was approached by a hospital social worker. Donna Becker said she was asked to sign the organ donation certificate.

“I just made a decision to do so knowing Shane would’ve wanted me to,” she told McKeown.

But the decision to take Becker off life support had to be postponed. The family wanted to WAIT for his father, who had to drive from the BC interior to say his final goodbye.

While they were WAITING, Becker’s mother, a nurse, noticed a tiny change in her son.

“When we were all holding his hand, he did, there was definitely some change in his grasp. It became a little stronger, especially when we spoke to him,” she told McKeown. Because they were waiting Shane Becker is now 32, married and a father.

The debate over defining death has mostly been conducted in the medical community, out of public view. It is time to make the debate public. Excuse my sarcasm but good luck with that. Organ donation is a multi billion dollar industry.


Please take a few minutes and watch this video produced by CBC/Radio-Canada. Listen to both sides of the debate. You may have to decide for one of your loved ones. Informed consent is critical to making the best decision for your loved one.

Informed consent is given when the consented has an adequate understanding of the relevant facts, and voluntarily, without coercion, consents to some procedure.


“The motives are good, the means that are questionable or morally objectionable,” according to Mary Ellen Waithe, professor at Cleveland State University featured in the video at the 20 min mark. I beg you to watch at least 10 minutes of this to see what she discovered. Scary stuff, which will now cause me once again to dig out Jamie’s medical records and see if he was given Heparin. (encourages the brain bleed) Listen to the transcript that she discovered between transplant surgeons at Cleveland Clinic. Crazy…

I completely lost it when I listened to Shane’s own words, saying he was floating above his bed, saw his family weeping and crying and saying, “guy’s I’m here, I’m trying, I’m fighting, I just can’t communicate with you.”He stated he was there cognitively, I was frustrated I couldn’t communicate with them. ”

Jamie in the hospital

Shane, young, smart, strong athletic prime candidate for organ donation. Fighting to communicate with his family. Can you imagine what would have happened IF his dad had not been out-of-town and was traveling to get there to say his good-byes?

  Oh God, my son Jamie let us know is so many ways he was fighting. 

And this is why I write and share because I don’t want anyone to not understand about brain death.

Jamie Caulk 

Brain Death is not biological death

1) the lack of all brain functions does not correlate to the cessation of the functioning of the organism (us) as a whole.

2)  An organism with a complete lack of brain function, if maintained on a ventilator, can nonetheless maintain certain homeostasis-maintaining biological functions, and so remain biologically alive.

3) Biological death is the event that separates the living (or dying) process from the process of increasing entropy. Entropy is deterioration, degeneration, crumbling, decline, degradation, decomposition, breaking down, collapse; disorder, chaos.

4) Early on in the brain death literature it was discovered that individuals can meet the diagnostic requirements for brain death in terms of apnea, unresponsiveness, and lack of cranial nerve reflexes, yet maintain certain neurological functions. This was further proved in a study by Dr. Alan Shewmon.

Informed Consent

chairs at secretary of stateInformed consent is given when the consented has an adequate understanding of the relevant facts, and voluntarily, without coercion, consents to some procedure.

If the person is not conscious then informed consent can be given by the decision-maker. (Be careful who you choose)

There are two ways to give informed consent to remove organs for those declared “brain-dead”.

1) Once you have been pronounced “brain dead” the physician, can ask your family members and or friends.

2) When you sign up to be an organ donor at the DMV, or Secretary of State.

Unfortunately, each hospital has their own processes or protocols for determining a call of brain death. Think of your own area’s hospitals. As an example in Michigan, we have several hospitals that are Trauma 1 hospitals.

You could be pronounced brain death at U of M. by a nurse who can call it. But at St. Joes you may have to have two tests, 24 hours apart, at Beaumont you may need two physicians and a required EEG, at Detroit Receiving Hospital they may require a nuclear scan.  ( I have no idea expect for U of M just using this an example of how hospital have their own protocols.

The difference is practicality you can be pronounced dead in one hospital and not dead in another depending on their protocols.

Mike Nair-Collins, Ph.D. at The Bioethics Program at Mount Sinai School of Medicine in NYC, who is the inspiration for this post said, “consciousness, does not determine death”.

Informed consent is achieved through a conversation between patient or surrogate decision-maker and physician, where the physician explains the relevant facts to the decision-maker.

Words Matter

For the conversation to result in the successful communication of information, both the physician (the speaker) and the decision-maker (the hearer) must play their respective communicative roles appropriately. For the physician, that means that they must understand her own subject matter before they can communicate that to the hearer.

Unfortunately, many physicians do not understand the conceptual difficulties, inadequacies, and fallacious reasoning surrounding the brain death doctrine. I make this claim on the following four grounds. First, the literature upon which the brain death doctrine is based is riddled with non-sequiturs.

Discussions of critical vs. non-critical functions are irrelevant, consciousness is a red herring, as the difference between life and death is not the presence or absence of consciousness, there is confusion between diagnosis and prognosis, the creation of various homonyms distorts the issue and obscures the underlying value judgments, and there is confusion between the normative questions about organ donation with the factual questions about biological life and death.

We can hardly expect that great clarity will arise from such a confused primary literature, and it is no surprise to find a lack of  understanding about death, brain death, and the relations between them.

As a result of our acceptance of the dead donor rule, and as a result of the legal definition of ‘death’ in terms of brain death, the physician, as Miller and Truog note, must insist that brain death equals death. Thus, the physician must inform the family member that her loved one “is dead”.

But what does that mean, since there are at least six different homonyms, all of which are spelled, and sound like, ‘dead’?

In linguistics, a homonym is a word that has different meanings. In the strict sense, one of a group of words that share the same spelling and pronunciation but have different meanings. Thus homonyms are simultaneously homographs (words that share the same spelling, regardless of their pronunciation) and homophones (words that share the same pronunciation, regardless of their spelling)

New Guidelines for pronouncing death after cardiac deathI have written recently on the study of physicians who pronounce brain death.

Presumably the family member will interpret ‘dead’ in the common sense use of the word. Whatever other connotations might be involved in the word ‘dead’, some version of the biological concept, of cessation of functioning, clearly lies at the core of the common-sense concept.

On the biological concept, and hence on at least part of the commonsense concept, the brain dead patient is still biologically alive.

Therefore, the decision-maker does not have adequate understanding of the relevant facts; namely, the decision-maker is misinformed about whether the brain dead patient is biologically alive or not.

1) Physicians try to explain something that isn’t true.

2) The family member tries to understand a concept called brain death, but they may be thinking of the homonym word death and not understand that their loved one is STILL biologically alive.

3) When a doctor tells you your loved one is dead, you are NOT thinking of a legal, clinical determination but dead in the common sense, or the historical sense of the word dead.

4) This is one reason Organ Procurement agents are used the majority time because they learn scripts and dialogs and are rewarded when they meet their quotas.

Is Informed Consent Really Informed?

From a study done by Woien, S., M.Y. Rady, J.L. Verheijde, and J. McGregor, “Organ procurement organizations internet enrollment for organ donation: Abandoning informed consent,” BMC Medical Ethics 7 (2006): 14, they determined that out of the 60 OPO websites they looked at that there was NO reliable information on the organ donation process.

Our findings showed that the disclosure on OPO Web sites and in online consent forms lacked pertinent information required for informed enrollment for deceased organ donation … The Web sites predominantly provide positive reinforcement and promotional information rather than the transparent disclosure of the organ donation process.

Print this card and carry it with youPeople need to be able to make informed consent BEFORE signing to be an organ donor. They need to be able to understand that brain death is NOT the biological death of the person.

Organ harvesting from the brain dead donor kills the donor.

  • That is the fact, and if people are informed and still want to donate that is their choice…as long as they understand that brain death is not biological death.
  • Killing an individual to get their organs without informed consent is a moral violation both to the donor and their families who have to make that decision.
  • The public has been lied to, not informed and intentionally deceived by the medical community.
  • Biological science is what it is, whether we like it or not.

My friend Dr. Paul Byrne and W.F Weaver in their study “Brain death in not death said,

“Brain death” was not propagated via a medical scientific method. A committee of  experts was convened to deal with issues that could affect disposition and/or utilization of these patients. The first words of the “Report of the Ad Hoc Committee of the Harvard Medical School to Examine the Definition of Brain Death” … are as follows: “Our primary purpose is to define irreversible coma as a new criterion for death.”…

The primary purpose of the Committee was not to determine IF irreversible coma was an appropriate criterion for death but to see to it  that IT WAS established as a “new criterion for death.”

With an agenda like that at the outset, the data could be made to fit the already arrived at conclusion. It seems that there was a serious lack of scientific method in this process.

Byrne, P.A., and W.F. Weaver, “’Brain death’ is not death,” in C. Machado and D.A. Shewmon, eds., Brain death and disorders of consciousness (Springer, 2004), at 43

The entire paper by Michael Collins can be read:  Death, brain death, and the limits of science | Mike Nair-Collins –

Justina Pelletier

JJustina Pelletier plan from BCHI wrote yesterday about Justina Pelletier who has been held at Boston’s Children Hospital since Feb 13,2013 against her families will.

Since I was alerted to this story I have been following it very carefully and doing a lot of research on my own.

Justina is considered a ward of the state.

A ward means any child who has been adjudged dependent by a court and who is under the care or custody of a public official or agency, including foster children, or any child under the control of DSS in the state of Massachusetts. This also applies to children in penal custody or otherwise detained within the criminal justice system.
When Justina’s family did not agree with the plan of BCH to treat their daughter for mitochondria disorder and diagnosed her with “somatoform pain disorder,” (a psychiatric condition when a person experiences physical pain for which no known medical explanation can be found) they wanted her returned to Tufts Hospital.
Because Justina is now a ward of the state of Mass they can now treat her or withhold treatment anyway they want to.
Pay attention to the words on the treatment plan:
  • Strict limitations on medical discussions with the family
  • No discussions of medical test results
  • No second opinions
  • Eliminate discussion outside “our” hospital

Informed Consent

Informed consent is widely regarded as a cornerstone of ethical research. Because children (except for adolescents under certain conditions) do not have the legal capacity to provide informed consent, the concepts of parental permission and child assent have been developed as standards for ethical research involving children.

Parents have a most intimate and profound duty and desire to protect and promote their child’s safety and well-being in research, as in all realms of life. By improving the initial and continuing process for securing parental agreement to a child’s participation in research, investigators, IRBs, research institutions, and others can support parents in fulfilling their responsibilities and, thereby, help them feel that they have done the right thing for their child, whatever their decisions about research participation.

Those last two statements are taken from the National Research Council. The Ethical Conduct of Clinical Research Involving Children . Washington, DC: The National Academies Press, 2004

So in the case of Justina Pelletier, her family refused, the hospital got its way by making her a ward of the state so they could treat her anyway.

Please read Boston Children’s protocol on doing RESEARCH experiments on children who become wards of the state, it is only 2 pages.

Elizabeth Wray

This is not the first time making a child a ward of the state has occurred at BCH.  Elizabeth Wray arrived at Boston Children’s Hospital in Sept 2012, Wray said doctors at Children’s told the family that Elizabeth’s conditions were psychiatric in nature and not medical and suggested placing her in a psychiatric ward.

The same thing happened to her family that is occurring  to Justina Pelletier’s family they too were placed under a gag order. WTH?

After 10 months Elizabeth Wray was released from the hospital and sent home.

Justina has been in captivity for over a year.

I am a mother of five children, one in heaven. I speak to my children every day. I can NOT imagine what this little girl is feeling, isolated and alone. This in and of itself is a tragedy and my heart breaks for Justina. We know physically she is deteriorating, she has gone from ice skating until she got the flu to now in a wheel chair.

It is obvious that children’s hospital has been doing research on children (they refer to them subjects) for many years. I am quite sure they are not the only hospital participating on trials both medically and psychology on children.

They should follow the guidelines noted above in the National Research Council. The Ethical Conduct of Clinical Research Involving Children and get parents permission

STOP making children wards of the state to get your research!!

  • If Boston Children’s Hospital thinks Justina Pelletier was misdiagnosed and removed her from her parents, what about her sister Jessica who also has been diagnosed with the same disorder?
  • Why are people with Chronic Lyme disease not covered by their insurance companies?
  • Why is the American Psychological Foundation made up of a few people able to come up with new diagnosis all the time like grief? Yes grief after two weeks is now a psychological condition. Give me a break!
  • Why are not diseases with physical conditions like PANDA’S (Pediatric Autoimmune Neuro-Psychiatric Disorder Associated with Streptococcus),mitochondria disorder, lyme disease not getting the attention they deserve.

Please sign the petition to investigate the civil rights violation of Justina Pelletier.

Donate to Free Justina via PayPal.

I’ll end with a nice video made my Jennifer Leigh for the family.

Parents have no say if the child signs the organ donor card.

I tried to tell you in a post written a few months ago that if your child or loved one is critically injured you have no say in refusing to have their organs harvested. A case in Columbus, Ohio reveals a recent example of this.

A 21-year-old Columbus man who had been declared legally dead but was on artificial life support had his organs harvested under court order yesterday over his family’s objections. You can read the story here on the Columbus Dispatch.

Uniform Anatomical Gift Act

The Uniform Anatomical Gift Act (UAGA) clearly states that

  1. Minors if eligible under the law are embowered to be a donor. If the minor donor dies under the age of 18, it “seems appropriate that the minor’s parents should be able to revoke the gift.” However, the minor’s parents cannot revoke the anatomical gift if the minor donor later dies over the age of 18. In a state that provides that a license issued to a minor is good for five years and the minor applies for the license at age 17, the minor can make an anatomical gift on the driver’s license at age 17 and need not reaffirm the gift for another five years. Furthermore, once the minor reaches age 18, the minor’s parents cannot revoke the gift.
  2. Under Section 8 of the 2006 UAGA, which strengthens the language regarding the finality of a donor’s anatomical gift, it clearly states that “there is no reason to seek consent from the donor’s family because the family has no legal right to revoke the gift.”
  3. The UAGA exhorted the Organ Procurement agents to stop the practice the practice of seeking affirmation (ex. from parents, added by me) when the donor who has clearly made a gift.This results in unnecessary delays in procuring organs and the occasional reversal of the donor’s wishes.

Informed Consent

Secretary Of State office in Ann Arbor MichiganHow many teenagers understand that you are not really dead, when your organs are harvested? There are no brochures at the Secretary of State’s or Department of Motor Vehicles when you sign up to be an organ donor. It sounds altruistic, a good thing…but you are not informed that organs can not be taken from truly dead people, you are only given the diagnosis of “brain death” and no hope of recovery.

We see from the recent story that hit all major news outlets this past week that a woman opened her eyes while laying on the table just as her organs were about to be harvested, that hospitals and doctors do make mistakes.

What if that was your child?

What if you wanted to overturn the fact that your child’s organs not be taken because they were not informed?

After officials at Grant Medical Center notified Lifeline of Ohio of Smith’s wishes, Pamela and Rodney Smith said they didn’t want their son’s organs harvested. On Sunday, Pamela Smith, of the East Side, wrote to Grant and to Lifeline to say that the family did not consent to harvesting his organs because Elijah did not fully understand the choice he had made.

“We do not want our son to die like this,” she wrote. “We do not want our son to be an organ donor.”

But, they lost.

Their precious child was cut open and died on the operating table as you are very much alive when your organs are taken, the heart being the last organ to be taken.

How to Get Off the Organ Registry

Talk to your family members about what really happens in Organ Harvesting?

Download the card to protect and preserve your life, written by Dr. Paul Byrne of the Life Guardian Foundation.

Carry it at all times

Send a letter of refusal to the Organ Registry in your state and any state you may have signed up in.

***The photo is one I took in Ann Arbor at the Secretary of State office on Thursday, the girls behind the counter were all wearing badges encouraging people to sign up***  (no informed consent) 

Informed Decision

It is important to make An Informed Decision before being an organ donor.

In this question and answer format (link above) Dr. Paul Byrne answers the questions that everyone needs to be aware of before signing the organ donor card.

What does it mean to make an informed decision before you become an organ donor?

Does a teenager between the ages of 16-18 understand what it means when they sign the donor card?

I submit to you the answer is no.

Teenagers are thrilled to be getting their driver’s license and when they approach the clerk she simply asks them, “Do you want to donate your organs after you die?  If they say yes they are added to the Organ Registry.

Sign a contract with the organ donation card What do they know about being an organ donor ?

  • Are they giving informed consent to be cut open while their heart is still beating?
  • Do they know they will be given anesthetics to keep them from jerking, moving and squirming on the operating table?
  • Do they know that if they are truly dead their organs will be no good?
  • Do they know they are not dead in the sense they “think” it means…”when you die?”

The concept death by neurological criteria is being challenged more and more by neurologists. Although many of them still agree with organ donation they want to drop the hoax that you are really dead. They want to make it acceptable to publicly and openly say, we take your organs when you are “almost dying”.

Why, because they know it is the truth.

Do your children know it is the truth?

Pulling out hair at this article Disabled As Good As Dead

There is a shocking article published in the Journal of Medical Ethics by two Bioethicists, Walter Sinnott-Armstrong from Duke University and Franklin Miller from the National Institutes of Health’s Department. The authors have gone so far as to write an opinion paper this past January in which they  rationalize that death and total disability are morally indistinguishable.

In the paper they argue that harvesting organs from living disabled patients is not morally wrong.

In this rambling paper with total illogical reasoning they suggest, “there would be no incoherence in permitting vital organ donation from still living patients who are totally disabled.”  (Go ahead read it or skim it you’ll get the point soon enough.)


In the aforementioned paper they opine that their critics might object to abandoning the “dead donor rule” and that by doing so would take us down the slippery slope to procuring vital organs from the mentally retarded or other groups of vulnerable individuals with disabilities.

Absolutely not, they write. “We can hold the line for vital organ donation by continuing to restrict it to those in a state of total (universal and irreversible) disability. It is only these donors who would not be harmed or wronged by vital organ donation, since all other donors have abilities to lose.”

Yea right….

FYI, the “dead-donor rule” refers to two accepted ‘ethical norms’ that governs the practice of organ harvesting before transplantation:

1) vital organs should be taken only from dead patients,

2) living patients should not be killed for or by organ procurement.

I would love to hear your thoughts in the comments. (Click the comment chain above.)