Nix on Presumed Consent

First Things asked me to opine on the recently introduced New York legislation (A-9865) to enact a presumed consent law for organ donation.  Glad to oblige.  I open by identifying the problem.  From  “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.

People are wary of transplant medicine.  In order to gain trust, the transplant medical sector made two solemn promises to society:

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.

Both are now in danger of being broken.  I warn against the many proposals to eliminate the dead donor rule, oft discussed here at SHS.  I then pivot to presumed consent.  I describe the legislation and explain that while it seems to have increased the organ supply in Spain and France, it has had mixed results elsewhere.  Besides, the USA is not 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.

And then there is the current troubling medical context in which presumed consent would be implemented:

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.

Last but not least, there is the issue of public policy integrity, a commodity I worry is in increasingly short supply in our world driven by emotional narratives:

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.

Good motives do not necessarily make good policy—in fact, as with presumed consent, too often, just the opposite.