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What you lose when you sign that organ donor card

Eighteen months ago, there was an article in the Wall Street Journal, titled What You Lose When You Sign That Donor Card. it was written by Dick Teresi. Since the article was posted, Dick has published a book called The Undead…how medicine is blurring the lines between life and death.

The Undead by Dick Teresi I had read his book about a month before the WSJ came out and loved his writing style, sense of humor and his ability to take medical concepts that I was just starting to understand and turn them into an easy to understand book on the transplant industry.

To say a firestorm exploded would be putting it mildly. My grief therapist even called me to tell me she read the article in the Sunday paper,”Gosh now I understand what you have been saying.” I told her I had read it on Saturday in the online edition and even commented. That comment is now buried in the 572 comments.

Today, my son sent me the article and I decided to read it again and the 572 comments. It was almost comical what started out with reasonable comments and then they slowly turned after an All Points Bulletin was sent out, and all the transplants surgeons, critical care nurses and those who have received organ’s chimed in.

The one thing I kept reading over and over again was, “I hope if you ever need an organ, or you’re loved one does, you don’t get it.” Now that is a wise comeback to make someone feel guilty or fearful for opposing organ donation.

Most of the commenters missed the point completely that you are not dead when they harvest your organs in the sense most people think of death. And that if you are not dead, you feel pain.

Brain death is a legal, medical term that was coined after an Ad Hoc Committee at Harvard determined a new definition of death.

“An individual who has sustained either (1) irreversible cessation of circulatory and respiratory functions, or (2) irreversible cessation of all functions of the entire brain, including the brain stem, is dead. A determination of death must be made in accordance with accepted medical standards.”

The definition was formalized by the Uniform Definition of Death Act and is now the standard used in every hospital. In order to harvest the organ’s from a severely injured person that person must be pronounced dead.

 The “Dead Donor Rule”

The “dead-donor rule” refers to two accepted ‘ethical norms’ that govern 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.

There is a movement now by several well-known transplant surgeons to get rid of the “dead donor rule,” and call it what it is a legal fiction. Tell people the truth on what is happening…that you are not dead…yes, critically injured…and get consent to harvest your organs knowing you are not dead.

They believe that with such consent, there is no harm or wrong done in retrieving vital organs before death, provided that anesthesia is administered. But, many doctor’s and OPO’s (Organ Procurement Organizations) are not so sure and are fearful that more people will NOT consent if the truth is exposed. The Gift of Life is so benevolent sounding. (((sarcasm)))

Characterizing the ethical requirements of organ donation in terms of valid informed consent under the limited conditions of devastating neurologic injury is ethically sound, optimally respects the desires of those who wish to donate organs, and has the potential to maximize the number and quality of organs available to those in need. Dr. Robert Truog and Dr. Franklin Miller in the New England Journal of Medicine.

Notice the comment is devastation neurologic injury, not brain death.

Buy Dick Teresi’s book, read it yourself, understand it. Whether you are on board for organ donation or against it be informed. I had to sign more forms when I got my daughters ear’s pierced at the mall and was handed a pamphlet to read than you handed when you are 16 years old at the DMV, or Secretary of State.

Don’t be intimidated to stand up for life…from conception to true death.

Success Stories of those who have awakened before organs were taken. Regardless of what the doctors will tell you people have survived.

Non-Heart Beating Donors

I have written quite extensively on organ donation. Since this blog is a prelude to the book coming out in October I want to write about non heart beating donors. (NHBD)

In April of 1997, Mike Wallace of 60 Minutes did a piece on “Are surgeons taking organs from patients who are not quite dead?” At the end of his piece, Mike Wallace predicted that taking organs from the “not quite dead” or non heart beating donors would go away.

He was wrong.

It has not gone away.

Jamie Caulk in hospitalWhen we were at Vanderbilt, Mike and I were in with Jamie praying over him. I felt someone in the room and opened my eyes and looked at the foot of bed. There she was…an Organ Requester.

What are you doing in here, I asked.

“Well I heard you wanted to donate your son’s organs by having his heart stop beating first.”

No, you heard wrong, I said. I don’t appreciate appreciate you coming in my son’s room and discussing this in front of him, didn’t you see we were praying?” “Now please leave you are not getting one organ from my son.”

Current regulations require hospitals across the United States to notify the Organ Procurement Agencies when a patient is in a coma. If it is a federally funded hospital they can lose their funding if they do not notify them.

The Uniform Anatomical Gift Act (UAGA) assigns explicit priority to the donor’s expressed intent so that consent for organ donation becomes irrevocable and does not require the consent or agreement of any person after the donor’s death.

The donor’s authorization to donate, recorded on an organ donor card, the individual’s driver’s license, or a donor registry, becomes a legally binding advance directive. The UAGA amendment enables OPOs to procure organs without family consent and in certain instances after family refusal to donate.

Organ Procurement Organizations

The OPO at Vanderbilt asked us if they could go ahead and start running tests on Jamie to see if he was suitable for donation.

Andrew-David Caulk My son, Andrew spoke up before any of us could, “No, you are not doing that, you are only hastening my brother’s death, we want him to wake up, you are NOT doing any tests.”

Organ Procurement Organizations have set goals to get your organs, with an average of 75% being the norm.

The Revised UAGA changes the default “non-donation” with “intent to donate” by presuming that a person automatically wants to donate. In the current default option “intent to donate” everything is done medically to ensure the stability of the patient until the OPO’s can determine the medical suitability of the person as a perspective donor.

However, under mandated consent the OPO’s would not have to even ask or request permission because the removal of organs would be compulsory.

Mandatory consent overrides the health care directive that many wise people have written for their end of life care.

One of the critical issue’s with the non heart beating donor is by waiting 2-5 minutes (depending on which hospital you are in and what their protocol is) overrides the “dead donor rule”. I have posted here that by pronouncing death it rules out that the harvesting of the organs causes the death of the person.

NHBD is a donor whose death is defined by “irreversible cessation of circulatory and respiratory functions” as opposed to “irreversible cessation of all functions of the entire brain, including the brainstem” (Uniform Determination of Death Act, 12 Uniform Laws Annotated 320.

If you believe as I and many other’s do that a brain dead person, is not truly dead, you will still be approached to consider your loved one being a non-heart beating donor.

What to do when you are approached about donation by cardiac death

Prior to donation, the patient will be given heparin and phentolamine (Regitine), they are taken off life support, the heart will stop for 2-5 minutes, or they will check your pulse for just a very few seconds and pronounce you dead.  You will be resuscitated, put back on life support and the harvesting will begin.

My recommendation is:

1) Do not allow heparin or phentolamine drugs. Heparin and phentolamine would NOT be drugs given to a patient care unless they were considering organ donation. In certain patients under certain circumstances, these drugs may actively hasten death. They are only used to enhance organ quality.

2) Understand that non-beating heart donation is a way to increase organ donation’s.  By removing you from life support before you have died  and for some reason can not be called brain dead.

3) Do not let them start to take blood and tissue samples.

4) Do not let them cannulate. This is a when they insert a tube into the artery in the femoral artery and femoral vein prior to withdrawal of life support. Cannulation is done so that organs can cooled and preserved to improve transplant outcomes.

5) Non-heart beating donation is a fall back to get organs when they can’t proclaim brain death.

Journal of Hospital Medicine written by Mohamed Y. Rady, MD, PhD, and Joseph L Verheijde, PhD, MBA and Joan McGregor, PhD. 2007; 2(5):324-334. 

Read more at Non-Heart-Beating Organ Transplantation: Medical and Ethical Issues in Procurement

The Dead Donor Rule Declare Death before Organ Harvesting

Before an organ can be harvest the patient must be declared dead.

The “dead-donor rule” refers to two accepted ‘ethical norms’ that govern 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.

Prior to the publishing of the paper,”A Definition of Irreversible of Coma” from the Ad Hoc Committee at Harvard University in 1968  a person was truly dead “only” when their heart stopped beating and they stopped breathing.

After the publishing of the Harvard paper (which is the most cited paper on Brain Death), surgeons had an open door to transplant vital organs. However, the medical community had a legal and ethical dilemma: vital organs must be taken from a living body, but removing vital organs will cause death in the patient. 

Hummmm what to do, what to do?

What are vital organs?

You must remember that for the majority of your organs to be transplanted they must be vital. The word vital comes from Middle English, from Old French, from Latin vītālis (“of life, life-giving”), from vīta (“life”), from vīvō (“live”).

Vital means alive, dead organs can not be transplanted.

The vital organs are heart, liver, pancreas, lungs, and kidneys. Patients must be declared brain dead before the removal of any of these vital organs.

 The “dead donor rule” was enacted because it was believed (rightly so) that people would never morally accept a persons organs being harvested if a person was “almost dead.”

The dead-donor rule was instituted and accepted so that death could be pronounced  and the organs harvested. 

The “brain death theory” is essential to current practice of organ retrieval because it legitimizes organ removal from bodies that continue to have circulation and respiration, thereby avoiding ischemic injury to the organs. Ischemic injury occurs when the blood supply to an organ is either partially or totally cut off.

If you injured in an accident and die before you can be resuscitated then your organs CAN NOT be transplanted. They are dead, useless. However, if you are declared “brain dead”, and are in the hospital and on a ventilator you are not truly dead, and your organs can be harvested.

The Controversy

In a shocking statement, Dr. Neil Lazar, Director of the Medical-Surgical Intensive Care unit at Toronto General Hospital, says the focus should be on the well-being of donors rather than whether they are legally dead. That could mean giving anesthetics during organ harvesting.

He and his co-authors, Dr. Maxwell J. Smith of the University of Toronto, and David Rodriguez-Arias of Universidad del Pais Vasco in Spain, advocate replacing the current “dead-donor rule” with a policy that educates the public about the true nature of patients used in transplants, obtain informed consent from everyone — and ensure the donor does not suffer during the organ harvesting. The study was published in the American Journal of Bioethics.

The authors state frankly that under current practices donors may be technically still alive when organs are harvested – a necessary condition to produce healthy, living organs. Because of this, they say that protocol requiring a donor’s death is “dangerously misleading,” and could overlook the well-being of the donor who may still be able to suffer during the harvesting procedure.

 “Because there is a general assumption that dead individuals cannot be harmed, veneration of the dead-donor rule is dangerously misleading,” they write. “Ultimately, what is important for the protection and respect of potential donors is not to have a death certificate signed, but rather to be certain they are beyond suffering and to guarantee that their autonomy is respected.”

 

The transplant community was NOT in favor of removing “the dead-donor rule” believing it would decrease organ transplants, upset families and stress health care workers.

Ya think?

How would you feel if the truth were told?

Doctors: “We are ready to take your loved one down now and harvest their organs.”

Family Member Crying: “So they really are dead?”

Doctor: “No, not really, but… we’ll give them anesthesia so they won’t feel a thing?”

At least Lazar, Smith and Rodriguez-Arias are telling the truth that you are not dead like most people have been deceived into believing.  

The transplant agencies want to keep the “dead donor rule” standard,the lie alive, and continue to allow you to believe you are dead to harvest your organs. 

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.)

Critics

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.)