Presumed Consent in theory and practice

That leaves us with the question of what a strong presumed-consent law would accomplish in the United States. If such a law really, truly removed the next-of-kin from the process, it is not unreasonable to think that you’d get a very strong backlash against donation.

It seems that you can bolster this argument by pointing to historical evidence in, e.g., Brazil. From the linked post at Marginal Revolution:

“Brazil, for example, switched to presumed consent and then switched back to opt-in when people became fearful and outraged and donation rates fell. It’s not hard to imagine similar blowback in the United States.”

You probably mean “sacred kind of gift”.

If such a law really, truly removed the next-of-kin from the process, it is not unreasonable to think that you’d get a very strong backlash against donation.

Two more reasons to add to your list:

1. Similar backlash issues already occur with living wills and advance directives for health care. My layperson’s experience with them is that regardless of state law, hospitals and doctors defer heavily to next-of-kin. There is an immense social expectation that this will happen, and even in states where the law technically says that your living will is the final say, there are regular anecdotal reports (and maybe research, I don’t know) that say that if the family disagrees with the living will, the incapacitated person’s wishes are often overridden. (E.g., keeping someone alive longer than they actually legally stated they wished to be kept alive.)

2. Racial dynamics undergird so much of American culture that they are impossible to escape in this context. It’s not just about sending a message that the doctors are going to take your organs, it’s about feeding the perception that white medical personnel are going to assert control over non-white people’s bodies without their consent. There is such a long and poisonous history in this country that even potentially legitimate activities such as DNA research often kick off explosive controversies — as just happened with the Indian tribe in Arizona (?) that recently made the news.

I personally know a family where a doctor doing a routine cesarean just decided of his own accord to go ahead and do a tubal ligation. The patient had previously stated that she wanted to have that procedure done, but also stated that she expected it would be a separate surgery at a future date. The doctor ignored her wishes, failed to even consult her husband (who he knew to be available in the waiting room) and simply asserted his judgment over hers when she was unconscious. This could be a generic story of a surgeon’s ego getting the best of him, but in this situation I knew enough details to feel confident that the (white) doctor would not have done this to a white patient, whereas he felt comfortable doing it to a black professional woman whose highly educated, native-English-speaking husband was nearby and available for consultation.

Great write-up. I think this illustrates how even when the sociological and anthropological angles to public policy situations get dismissed, they often end up driving the policy outcomes.

“if the family disagrees with the living will, the incapacitated person’s wishes are often overridden. ”
A dead person can’t sue. A family member can. As long as the patient has insurance, the hospital has no incentive to honor the living will if the family disagrees.

Nos. 8 and 9 stole my comments, before I could even articulate them!

I practice in the organ transplant world as a pediatric intensive care specialist. I take care of both children who become donors and children who receive their organs. I share your practical concerns over what fear and confusion presumed consent could cause, although as I understand things it wouldn’t apply to children. Trust is the fundamental requirement, and I think pediatric donation patterns illustrate that. Families of children who die have a quite high rate of organ donation, and for each of those donations we need to get consent. My own opinion is that the reason the donation rate for children is high is related to structure, to how pediatric critical care is organized. Physicians in PICUs tend to get closer individual relationships with families than often happens in adult ICUs because PICUs are set up to make that happen. So when the time comes to ask for a donation, physicians have a great deal personal credibility with families because they know each other. And that trust the key to getting families to say yes. If we cause doubt in the public’s mind about our intentions, donations could well go down, not up.

Since “opt-out” would require active participation it’s also likely that many would out of simple procrastination or effort avoidance, put off the act, even if they intended otherwise. Also, how would such “opt-out”s be executed? If it’s in front of someone who you assume will think badly of you if you “opt-out”, there’s a certain coercion, even if unintended.

And what about children/minors? Theoretically speaking these are some of probably the highest desired and most contentious donors. Even for the best cause, I’m not sure if my son died I could let him go so easily. I’m pretty sure I know what I’d do, however I’d still desperately want it to be my choice.

I’m assuming they are smart enough to make clauses about children, but if not it certainly would be a concern.

Finally, if the vast majority of people become likely donors, given so many doctors with so many different personalities, one does have to wonder if with some doctors in some edge cases the inclination will be to withdraw where the need is known, even if in other conditions they would not be so inclined. Maybe that’s not true, or so small as to be insignificant, but you can bet as you imply that this will be a patient/family concern (founded or otherwise).

Ultimately I’m not sure I’m against “implied consent”, however I agree with you, choosing to move forward with it is not a “no brainer”.

I have also had some experience of trying to make ethical decisions in regard to organ transplantation. The comment in 12 reflects the viewpoint of a concerned physician and is more widespread than the comments such as 13 suggest.
There is also a trend to forming a committee of individuals, not all of whom are physicians especially those who are involved in organ transplantation, who will oversee the decisions around the pronouncement of death and organ transplantation.
You perhaps may refer to these committees as Death Squads but I would suggest that the involvement of members of the public in these committees would make the need for presumed consent irrelevent. Such engagement might also provide some real insight into both how decisions are made around organ transplantation and the problems that may arise in coming to these decisions.

There is one aspect of transplant donation practice that has concerned me from time to time. It’s standard procedure for ICUs to notify the organ procurement people when a patient appears to be on the way to brain death. Not dead — but probably on the way. You then see these folks looking through the patient’s chart and gathering information. I can understand their motives: the organ procurement process is complicated and time-consuming, and they want to be ready to step in if asked to do so. But I’ve wondered on occasion what family members would think if they knew what the person in the corner shuffling through their child’s chart was doing. I should state emphatically that all the procurement people I’ve dealt with during three decades of doing what I do have been professional and appropriate. But the potential always exists for some who are not.

Aidan’s post above is a good one. But you have to be pragmatic – in the peculiar conditons of the US presumed consent laws would probably not work.

But what I think is good policy and what I think about a relative who presumed to override a person’s own wishes on what to do with their body are two different things. Apart from anything else, won’t these people be haunted by the thought of the stranger their interference may have killed?

Kieran: “As best we can tell they are the result of more investment and better training within the procurement system.” Hear, hear. Chris Johnson’s post in 13 (invaluable because informed by first-hand experience) points to an additional factor: the structure of the transplant service. In Spain, a country with very high donation rates exactly fitting Kieran’s observation that presumed consent is not enforced, the transplantation coordinator in every hospital is a specially trained doctor in the ICU: not a nurse or administrator, however well-qualified, working from an office at one remove from the bedside of the dying prospective donor. Handbook in Spanish here. Spanish transplant coordinators can therefore see that the question is always put; and put by someone the relatives can see has been actively doing their best to keep the deceased alive. You could argue that the Spanish scheme thins the barrier between the doctors certifying death and those carrying out the transplant, but it works without a backlash in a still pretty conservative society on this sort of thing.

Kieran seems to have won over these commenters, and my gut sense is that he’s right, though I wouldn’t presume to pronounce it. I have nothing to say to the argument as such, because organ donation isn’t anything I know about.

This little debate is interesting on a different level. It’s recognizable, even to one who knows nothing about the subject matter. Its logical and rhetorical patterns are the same as those of any number of left-right debates. And Kieran finds himself arguing the conservative side, with an argument that is conservative in spirit. Indeed, his argument could be mistaken for actual sympathy with actual conservatives, which almost certainly is why Nurse and Lawyer piled on in the first place.

Suppose you have or desire a Social Good, called Y. Could be anything, but it’s got to be something that pretty much everyone agrees is a Good. Child literacy, public sanitation, stuff like that. Y is good. Only a bad person would be against Y. In this case, Y is supply of organs for transplant.

Progressives want Y very much, because they’re so nice. And they always have policy ideas, which we’ll call X, for getting more Y. Do X to get Y, they say. Of course, in this case X is presumed consent.

Conservatives stereotypically stand for the status quo, and this argument gets started when the conservative voices his various objections to X. X will cost too much, is a pretty standard line (conservatives may be good people and still value something other than Y). Another common objection to progressive schemes, and the one Kieran raises here, is that X will not, in fact, get more Y.

Nurse and Lawyer come back with “maybe he’s against organ donation”. Of course, if you’re against Y, you must be a bad person. This particular socialist debate tactic is so old that Bastiat complained about it back when Bastiat was alive. “You don’t want it done my way, therefore you don’t want it done. You bastard.”

What earns Kieran the “ridiculous”, however, is something else. It is what he calls the social facts as they stand. This puts Kieran in the unenviable position of having to advocate respect for some people’s conservative sensibilities. Ideally, he would like presumed consent, but the situation is not ideal. There are some who react badly to “presumed consent”. Kieran’s sympathy for these people is cold, highly qualified, and deniable, but in the end he says that conservatives’ feelings, rational or not, ought to be taken into account simply because they will affect the real outcome.

Progressives don’t usually say that. Coming from a progressive, it’s actually rather noble.