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Presumptuous Consent

Many more sick people need kidneys, hearts, and livers than there are kidneys, hearts, and livers to go around. This shortage is the result of both decreased supply and increased demand. For example, public safety laws requiring that motorists wear seat belts and motorcyclists helmets have reduced the kind of catastrophic head injuries that often lead to organ donation. At the same time, the capacities of transplant medicine have advanced exponentially, allowing more people to benefit from a transplant than ever before. The toll taken by the resulting shortage is measured in the number of patients who die while waiting in line for an organ to become available.

The transplant community is pushing to increase the number of people signing donor cards. But the acute organ shortage has also tempted some to seek a weakening of the strict ethical rules that have for decades successfully maintained the public’s broad—if shallow—trust in organ transplant medicine.

Broadly stated, these rules prevent patients—no matter how sick or catastrophically disabled—from ever being treated as a mere organ system rather than an equal member of the moral community. This is accomplished through adherence to two legally enforceable principles:



  • Donors of vital organs must be clinically dead before procurement, a requirement known as the “dead donor rule;” and

  • Organs will be taken only if consent is freely given—either by the patient via signed organ donor cards or by family members. Indeed, informed and freely given consent is currently recognized as being so symbiotically bound with the public’s trust in the transplant system that organs are almost never procured without obtaining explicit familial consent even when a donor card is on file.


  • Many current proposals to alleviate the organ shortage would devastate the viability of both protections. For example, papers published in some of the most world’s most notable medical and bioethics journals—the New England Journal of Medicine, Lancet, Critical Care Medicine, among others—have urged eliminating the dead donor rule. One often advocated approach is to “redefine death” to include the diagnosis of persistent vegetative state, based on the noxious notion that a patient who has irreversibly lost conscious awareness ceases to be a “person.” Hence, even though such people are obviously alive, advocates argue that their loss of perceivable awareness make life and death in these cases a distinction without a meaningful difference.

    Still, despite the growing advocacy for eliminating the dead donor rule, ethicists understand that killing clearly living patients for their organs would decimate public trust in transplant medicine. Thus, while these proposals must be resisted vigorously every time they are made, it is unlikely that any will be adopted.

    Alas, the same can’t be said for the continued vitality of the second principle. Indeed, legislation (A-9865) just introduced by New York Assemblyman Richard Brodsky would turn the current approach for obtaining consent inside-out. Brodksy’s bill would require every applicant for a New York driver’s license to expressly opt out as an organ donor, rather than, as is currently the case, expressly opt in. The proposal states: “If the applicant does not decline to be registered in the New York State Organ and Tissue Donor Registry they will be automatically enrolled.” In other words, unless you explicitly refuse to be a potential donor—you are one.

    “Presumed consent,” as this approach is known, is already the law in several countries, and studies are mixed as to whether they meaningfully increase the organ supply. But even if such laws have added to the number of transplantable organs in countries like Spain and France, as seems to be the case, we are not (yet) Europe. We value individualism over collectivism, autonomous decision making over the imposed “greater good.” Indeed, presumed consent laws could unleash a boomerang effect: Many would resent the new approach as government coercion over one of the most intimate decisions anyone can make and protest by taking the opt out option.

    The current societal context must also be considered. The Obamacare debate, with its specter of “death panel” rationing boards and waiting lines, significantly undermined the people’s faith in our medical system. Now, factor in presumed consent to the popular fears that expensively ill and injured patients will soon be discarded as so much medical waste. Finally, mix in already existing medical futility policies—such as in Texas—which permit hospital ethics committees meeting behind closed doors to refuse wanted life-sustaining treatment based “quality of life” or the cost of their care—and you have a perfect prescription for distrust in all things medical. In such a milieu, the temptation to believe that your catastrophically head-injured son could have been saved, but died because his organs were deemed more valuable than his life, would be, for some, hard to resist.

    Finally, there is the issue of integrity. We have become a public policy promise breaking nation. Think of the many times solemn assurances have been given that reasonable restrictions will be maintained in order to gain popular acceptance of controversial policies—and how casually they were cast aside once the deal was sealed. Remember when IVF was going to be limited to infertile married couples? Now “Octomom”—a fertile, single woman—has fourteen children conceived by IVF and has become a cover model for celebrity magazines.

    We can’t permit a similar pattern to swamp the ethics of organ transplant medicine. A bad idea—even when envisioned for altruistic reasons—is still a bad idea. Presumed consent has no place in American medicine or public health policy.

    Award winning author Wesley J. Smith is a Senior Fellow in Human Rights and Bioethics for the Discovery Institute and author most recently of A Rat is a Pig is a Dog is a Boy. He is also a special consultant to the Center for Bioethics in the Culture. His Secondhand Smoke is one of the First Things blogs.



    Resources

    Linda Wright, “Is presumed consent the answer to organ shortages?

    Wesley Smith, “‘The Scientists’ Want To Loosen Definition of “Brain Death

    The editors of Nature, “Delimiting Death

    Wesley Smith, “Death by Committee


     



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    Comments:

    5.18.2010 | 8:24am
    Southernman says:
    Maybe the answer is in research to eliminate the causes of organ failure. Harvesting living humans for their organs is morally unacceptable. The same objections holds for producing fetuses for stem cell research. If we abandon morality for the sake of science we are on the same road that Nazis have already traveled. While the benefits may be great the will come at the expense of our humanity.
    5.18.2010 | 12:11pm
    Wesley,

    Do you likewise characterize the Revised Uniform Anatomical Gift Act which has now been adopted in more than 30 states as a "presumed consent" law? The law suggests several methods to make an anatomical gift but actually requires an affirmative written refusal in order to (a) limit the authority of relatives to give proxy consent or (b) prevent the unauthorized harvesting of organs by medical personnel. If the donor fails to make an effective refusal, doesn't the law presume that either the donor has consented or has given his proxy to relatives? See e.g., http://www.lrc.ky.gov/record/10RS/SB4/bill.doc
    5.18.2010 | 5:32pm
    Bret Lythgoe says:
    Thanks, Wesley Smith, for your tireless efforts in this area. Clearly, the notion of "presumed consent, will, de facto mean no consent, in that most people will simply be too niave to think they can say no. Some might say that this is a small price to pay, for the probable increase in organ donations, and the resultant saving of more lives, but this presupposes the validity of utilitarianism, and that individual liberties takes a back seat.

    As for "redefining'' death to include the so-called persistent vegetative state, this presupposes that we possess more knowledge of the brain, and how it produces conciousness, than we really do. The truth is, we're almost completely in the dark regarding how billions of neurons, sending "electrical messages'' to each other results in consciousness. It's a profound mystery. So, it's feasible, that those diagnosed with persistent vegetative state, really have something else (as some doctors asserted in Terri Shavio's case. They plausibly claimed that she may have been suffering from a "minimal consciousm=ness state, rather than persistant vegetative state). Also, it's possible that, considering our profound ignorance of how the brain produces human attributes, the "persistent vegetative state, may not be so persistent after all. That is, maybe, with vigorous rehabilitation, it could be cured.
    5.19.2010 | 5:03am
    Dave Undis says:
    If we're going to presume people are organ donors unless they opt out, there needs to be a reward for not opting out. Donated organs should be allocated first to those who haven't opted out. People who opt out of organ donation should go to the back of the transplant waiting list. The United Network for Organ Sharing, which manages the national organ allocation system, has the power to make this simple policy change. No legislative action is required.

    Americans who want to donate their organs to other registered organ donors don't have to wait for UNOS to act. They can join LifeSharers, a non-profit network of organ donors who agree to offer their organs first to other organ donors when they die. Membership is free at www.lifesharers.org or by calling 1-888-ORGAN88. There is no age limit, parents can enroll their minor children, and no one is excluded due to any pre-existing medical condition.

    According to a new survey by Donate Life America 43 percent of people are undecided, reluctant or do not wish to have their organs and tissue donated after their deaths. Is this because Americans don't know there is an organ shortage? No. The survey also reports that 78 percent realize there are more people who need organ transplants in the U.S. than the number of donated organs available.

    Just about every single one of the 43% of Americans who aren't willing to register as organ donors would accept an organ transplant if they needed one to live. As long as we let non-donors jump to the front of the waiting list when they need transplants we'll always have an organ shortage.


    David J. Undis
    Executive Director
    LifeSharers
    5.19.2010 | 10:34am
    Some may view this as a philosophical issue, but I fear that it would shortly become a mere economic issue. If doctors are allowed to take healthy organs as inventory for their transplant practices at little or no cost and without the express consent of the "donor" (i.e., the new corpse), they will recognize the organs as their rightful "supply" take it by hook or by crook, and thus be able to bill their standard fee to the lucky recipient whenever there is adequate demand. The difficulty with that is that, if the presumed donor has not taken affirmative steps to protect his/her life from plundering, the doctor will have a strong economic incentive to grab for the organs long before the "donor" is dead. Not to put too crass a pov on this, but you can almost hear the doctors saying:"Get them while they're hot." This is the reality of the marketplace.
    6.1.2010 | 3:48am
    Jesurgislac says:
    I agree that use of the organs of a living donor, against the donor's will - indeed, unless the donor has herself given active and willing consent to that use - is profoundly immoral.

    That is, of course, why I am and always will be pro-choice. It is as wrong to force the use of the uterus as it is to force the use of any other organ of the body. Indeed, pregnancy is the means of making a fertilised egg into a baby that makes use of all the bodily resources, not only the uterus: to argue that women can be used for this purpose without their consent, to remove the right to elective abortions, is as immoral as any other attempt to use organs from a living donor without consent.
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