By Peter Laird, MD
The dead donor rule serves organ donors protecting those that can no longer speak for themselves. Tragic cases of death by organ donation are not talked about especially in the renal community yet they are documented and continue to occur in large part due to the lack of uniform brain death criteria throughout the US. Though fortunately rare in occurrence, anyone that has seen the NBC news report on the Zack Dunlap case should seek legislation assuring that no one would ever die as a result of death by organ donation. (here)
Unfortunately, coupled with paradoxical outrage at a Wall Street Journal article documenting the rare cases of death by organ donation, medical ethicists recently turned the discussion to procuring organs prior to the death of the donor. Although there were some ethicists who spoke against this newly proposed donation policy, many supported this new medical ethics paradigm.
The Case for Kidney Donation Before End-of-Life Care
Donation after cardiac death (DCD) is associated with many problems, including ischemic injury, high rates of delayed allograft function, and frequent organ discard. Furthermore, many potential DCD donors fail to progress to asystole in a manner that would enable safe organ transplantation and no organs are recovered. DCD protocols are based upon the principle that the donor must be declared dead prior to organ recovery. A new protocol is proposed whereby after a donor family agrees to withdrawal of life-sustaining treatments, premortem nephrectomy is performed in advance of end-of-life management. Since nephrectomy should not cause the donor's death, this approach satisfies the dead donor rule. The donor family's wishes are best met by organ donation, successful outcomes for the recipients, and a dignified death for the deceased. This proposal improves the likelihood of achieving these objectives.
As a renal disease sufferer, I initially considered pre-emptive renal transplant with donation from my wife. However, after considering both my prior history of cancer and risk of cancer recurrence after renal transplant and the risks entailed for my wife, I declined to pursue that option and then focused on optimal dialysis considerations. After all, renal disease is my disease and my responsibility. I do regret the loss of the kidneys that God granted to me, but I do not believe I have any right to another persons kidney whether dead or alive. It is a gift, it is not a right of any person with renal disease.
It appears to me that in many ways, the renal community has transformed renal donation into a right over the last two decades. Presumed consent at its heart gives ownership of vital organs by the state for all those that don't opt out of this system utilized in Spain and other nations. While I value the gift of organ donation, I still cherish my civil liberties and I would hope that the demand for renal donation would never preclude our right to liberty and self determination. Once again, it is my disease, not someone else who is a complete stranger to me who has their own right to life, liberty and the pursuit of happiness. In many ways, I personally would much rather die from my renal disease than see my renal disease used as a means of of encroaching another man's civil liberties.
I fear that I am in the minority opinion among my friends and colleagues in the renal community. It appears that just about any means of increasing renal donation no matter what the ethical implications of those policies and procedures is gladly welcomed by the renal community at large. Presumed consent, abandonment of the dead donor rule, donation by cardiac death and now kidney donation before end of life care infringe civil liberties for society in general and push the organ procurement ethical framework over the slippery slope endangering individual societal rights.
While I am sure that I will likely be in the minority opinion on this issue among the renal community, I must still question whether there are limits we should not cross in providing all available ethical renal donations? Changing the definition of what is ethical is a dangerous slippery slope that poses risks to society at large. Should we not who are most at risk in this society from our own renal disease support the protection of others who can no longer speak for themselves in their own tragic circumstances and forgo our greed for their organs by ever changing medical ethics?
American society decades ago saw the dangers of euthanizing anencephalic children and harvesting their organs recognizing the sanctity of person-hood in these children doomed to a sure death shortly after birth. I suspect our current modern society will re-evaluate that decision as well one day. I don't see these changes in our medical ethics as a positive change in any manner. I believe it shows a callous disregard of our human condition and respect and dignity for the individual and life in general.
We in the renal community must consider that same callous disregard for individual lives could in the end be the same sort of justification given to terminate treatment of those with renal disease as well. We are on the high price, low benefit scale according to many medical ethicists with some questioning how we perform dialysis in America. (here) The renal community needs to be very careful what we ask for as there are always consequences of seemingly small decisions.
Donation prior to death should never be the standard for organ procurement. I would hope that the renal community would understand this better than the general population since it was the respect for individual life that spurred the 1973 ESRD program funding in the first place. Losing this fundamental ethical paradigm could have untoward outcomes on continued ESRD funding in the future. The demand for kidneys today should not subvert the ethical foundations that secure our future especially in a time of limited resources.
I personally call upon the renal community to stand up and firmly disengage from the pursuit of renal donors at any cost through alteration of long held ethical paradigms. I would hope that the renal community will instead reaffirm the dead donor rule and set limits on the ethics of organ procurement. Respect for all life begins by recognizing the importance of the individual no matter what circumstances they encounter. Is that not the story of the ESRD program in 1973? If we won't stand up for those at risk of death from trauma and other illnesses, who will stand up for us in our time of need that the future shall surely bring.
I think we have to see the world as it is; we should not ignore uncomfortable truths.
If people are recovering from supposed brain death, then that should have been enough to trigger a careful evaluation of the previous standards. Yet now we have a loosening of criteria without evidence that cases like the Dunlap's were taken into consideration at all.
I understand the desire to increase the supply of kidneys but it can not be at all costs. I agree that there does seem to be a belief among too many in the transplant community that those who need an organ should be privileged over everyone else.
Posted by: Bill Peckham | Friday, June 08, 2012 at 06:28 PM
There is a lot of research on brain death criteria and a recent study showed strict criteria can essentially eliminate any aspects of false diagnosis. I will try to find the reference but they added several different criteria and had no false declarations of brain death in a large series.
Instead of complaining about the general public questioning brain death criteria, I believe that the renal community should embrace stricter criteria to protect the public's perception of organ donation. Just my opinion which appears to be a minority opinion in the renal community.
Posted by: Peter Laird, MD | Friday, June 08, 2012 at 09:28 PM
I have to wonder just how prevalent this "harvest organs at all costs" mindset really is. I am listed at two tx centers in two different states, and at no time has anyone expressed ANY deviation from current ethical guidelines. As a matter of fact, I got a call for a possible DCD kidney from a 12 month old infant, and it was thoroughly explained to me that no one had any idea how long it would take for the child's heart to stop beating after being removed from life support and that if it took too long, all organs would be rendered unuseable. It was a horribly sad conversation, but far from what this supposed bioethicist is proposing, my personal experience makes me believe that this guy's reasoning is just not going to stand up to any ethics test, and quite right, too.
One transplant nephrologist told me quite candidly that in her medical opinion, DCD kidneys should be avoided, and I intend to take her advice.
Posted by: MooseMom | Sunday, June 17, 2012 at 08:33 PM