Archives For UAGA

Annals of Medicine: As Good as Dead : The New Yorker

This is a rather long article in the New Yorker but well worth the read. Written by Gary Greenberg who follows the story of a 14 year old boy and ends up at the Third International symposium on Coma and Death. He exposes it very well.


Virtually every expert I spoke with about brain death was tripped up by its semantic trickiness. “Even I get this wrong,” said one physician and bioethicist who has written extensively on the subject, after making a similar slip. Stuart Youngner, the director of the Center for Biomedical Ethics at Case Western Reserve University, thinks that the need for linguistic vigilance indicates a problem with the concept itself. “The organ-procurement people and transplant activists say you’ve got to stop saying things like that because that promulgates the idea that the patients are not really dead. The language is a symptom not of stupidity but of how people experience these ‘dead’ people—as not exactly dead.”

Robert Truog, a professor of medical ethics and anesthesiology at Harvard Medical School, is even more critical of the protocol. “Non-heart-beating protocols are a dance we do so that people can comply with the dead-donor rule,” he told me. “It seems silly that we hang on to this façade. It’s a bizarre way of practice, to be unwilling to say what you are doing”—that is, identifying a person as an organ donor when he is still alive and then declaring him dead by a process tailored to keep up appearances and which, in the bargain, might not best meet the requirements of transplant. In Truog’s view, a better approach would be to remove these patients’ organs while they are still on life support, as is done with brain-dead donors. “If they have detectable brain activity, then they should be given anesthetic,” he said, but there is no reason to continue to conceal what is happening by waiting for their hearts to stop beating.

Perhaps the medical profession should embrace the obvious: to be an organ donor is to choose a particular way to finish our dying, at the hands of a surgeon, after some uncertain border has been crossed—a line that will change with time and circumstance, and one that science will never be able to draw with precision. 

A lot has changed since this article was written. It is now required by Federal law that anyone in a coma, and a potential donor must be notified to the Organ Procurement agency.

The Revised Uniform Anatomical Gift Act of 2006

  • UAGA (2006) reaffirms that if a donor has a document of gift, there is no reason to seek consent from the donor’s family as they have no right to give it legally.
  • If an individual has not made a document of gift during life, the Revised UAGA (2006) presumes the intent to donate organs and, therefore, has expanded the list of persons (in section 9a) who can consent to organ donation on behalf of that individual.
  • The Revised UAGA (2006) considers that every individual has the right to donate his (her) organs at or near death.
  • Finally, if an individual prefers not to donate, this must be documented in a signed, explicit refusal.
  • In effect, a patient on life support systems at the end-of-life (and without signed refusal) is defaulted to the presumption of intent to donate organs, and therefore life support systems cannot be withdrawn until the OPO’s evaluation for organ donation is complete.
  • The Organ Procurement Organization can then determine that the patient is a prospective donor. How’s that sit with you?
  • Patients with documents of gift are considered donors irrespective of advance health care directives and they are required to comply with organ procurement protocols.
  • In the default pathway, (i.e. the absence of refusal and contrary intent declaration) life support systems are required, irrespective of advance health care directives, UNTIL the evaluation of medical suitability of organs for transplantation has been completed. Regardless of whether it is morally right to construe refusal of life support in an advance directive as not applicable for organ donation, the final authority of the OPO to determine donor’s medical suitability raises additional normative ethical issues.

The Law

This is the law, a federal law, read it, understand it and let me know what you think. Very few people think about these laws until they are faced with a loved one in a coma or severely injured in an accident.

Read it because it effects you even if you have end of life directives.

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) 

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

Is it cruel to question organ donation?

Steve Salerno wrote a piece for Playboy Magazine called, “The Heart Stopping Truth about Organ Donation”, in October 2002. No, I don’t read Playboy I’ve just read the article online.  I’m glad there was an article in Playboy, because wherever the TRUTH can be exposed about the lie of brain death being true death the better.

Mr. Salerno states that,  “According to the Centers for Disease Control, the mortality rate due to injury among men 18 to 35 years old is about twice that of the national average.” In other words, organ-procurement organizations (OPOs) are “waiting for you to do something stupid. In fact, they’re counting on it.”

The stats are on their side.

PlayboyIf you fall within that age range, you’re about four times more likely to meet a sudden end than your wife or girlfriend of an equivalent age is. Bottom line: If you’re the typical reader of Playboy magazine, you’re a prize candidate for organ donation. (Yes, glad Steve Salerno said it)

One popular belief peddled by the transplantation community is that brain death is as much a bedrock medical concept as conventional cardiac death. By those terms, a brain-dead patient is dead. Period.

In fact, brain death is an expedient “medical fiction,” to use Stuart Youngner’s phrase, invented to enable physicians to declare patients dead in a timely fashion and in a controlled environment.

“Anesthesiologist Philip Keep told the BBC that ‘nurses get really upset. You stick the knife in [into a patient whose organs are being removed], and the pulse and blood pressure shoot up.’ In an effort to squelch such disturbing manifestations, many British hospitals administer anesthesia prior to harvest. As Dr. Keep noted (without apparent irony), ‘If you don’t give anything at all, the patient will start moving and wriggling around and it’s impossible to do the operation.”

The Rules Have Been Written

The Dead Donor Rule

The Uniform Definition of Death Act

The Uniform Anatomical Gift Act

All of these laws are written to harvest your organs when you are pronounced brain dead. Though it’s not the kind of thing the medical establishment is eager to publicize, there has long been an arbitrariness to policies governing clinical determinations of death. “

Years ago one hospital, The Cleveland Clinic, wanted to implement a new standard that would declare a person dead with a five or seven-minute absence of a pulse,” says Carmen Marino, a former prosecutor for Ohio’s Cuyahoga County and one of a number of law-enforcement officials who have challenged the medical community’s willingness to alter current definitions of death.

“The organs that are most susceptible to blood deprivation after death are the heart and the liver. The liver transplant doctors said, “That’s too long. If we wait five or seven minutes, we’re not going to have a useful organ anymore. Let’s make it two minutes. And that was that.”

As a result, concludes Marino, “You go without a pulse for two minutes in some hospitals, you’re dead. They take your organs. In other places, at two minutes, they’re still trying to revive you.”

The reason for hushing up such facts is simple, says Stuart Youngner, director of the Center for Biomedical Ethics at Case Western Reserve University. “The OPOs are afraid that if we have these discussions publicly, it will slow down donations dramatically.”

Cynics look back on the Harvard milestone as a case in which a far-reaching medical judgment was made largely, if not purely, for non medical reasons.

Stuart Youngner is blunt: “The thrust of the Harvard decision was, ‘Let’s call them dead so we can’t be accused of killing them when we take their organs.”

New Guidelines for pronouncing death after cardiac death Well regardless of Marino’s ability to stop the Cleveland temporarily eventually every hospital adopted a 2 minute rule, and now there are even shorter guidelines.

During transfer the patient is supported on a ventilator, the ventilator is turned off, the patients heart stops, death is pronounced, then the heart is  started again, then your organs are harvested.

The heart is the last to go and at that point you are dead like most people think of death.

The legitimacy of “brain death,” “cardiac death,” and even “circulatory death” – which can be declared only 75 seconds after circulatory arrest – as actual death has been an ongoing debate in public commentary on organ donation.

Many experts assert that doctors familiar with organ donation are aware that the terms, intended to delineate a threshold of probable death, is different from actual bodily death, rendering highly uncertain the moral status of organ donation.

Is it cruel to question organ donation?