In the U.S., becoming an organ donor is as much about happenstance is it is about choice. A person can decide opt in to their state’s organ-donation registry, but they can’t choose how they die—and that part matters just as much as, if not more than, whatever wishes they expressed while alive.
The exact requirements vary from state to state, but in general, discounting the living donors who give their kidneys and partial livers, organs can be obtained from people in one of two circumstances: Either they’ve been declared brain-dead at the hospital, or they’ve died from heart failure at the hospital. Most deaths, though, take place outside the hospital—in 2012, the national average of hospital deaths across all 50 states was just over 20 percent. Meanwhile, the U.S. faces an organ-donation shortage; around 21 people die each day waiting for an organ transplant, according to the national Organ Procurement and Transplant Network.
The Institute of Medicine has estimated that permitting organ donation for that other 80 percent would increase the number of eligible donors by around 22,000 each year. But in a paper published in the Journal of the American Medical Association earlier this week, researchers from New York University proposed a more nuanced idea. Expanding the pool of potential donors is one thing, they argued, but turning potential donors into actual donors is another challenge altogether—one that hinges on family consent.
The authors’ solution: a gentler ask, one that gives the family time to process an unexpected death before turning to the logistics of it. Instead of bringing up donation on the spot, they wrote, emergency responders could request permission only to preserve the body, giving families time to process the death: “With the actual decision to authorize donation made hours thereafter, the pool of potential donors could be greatly expanded while respecting autonomy, choice, and vulnerability.”
I talked to Arthur Caplan, a bioethicist at the New York University School of Medicine and one of the paper’s co-authors, about how this change might make a difference in the country’s organ-shortage problem. Below is a lightly edited and condensed transcript of our conversation.
Cari Romm: In the paper, you talk about “controlled donation,” which is the norm in the U.S., versus “uncontrolled donation.” What’s the difference?
Arthur Caplan: Controlled is when death happens in the hospital—you’ve tried to resuscitate the person and you’re monitoring what’s going on in a hospital setting when a person has cardiac failure. Uncontrolled just means [the death is] taking place out in the street or in a non-hospital setting, where the EMT is trying to figure out, are you dead? So it’s a technical term that people use within the transplant field to say, “We know that these organs are pretty good because we know exactly what happened, it was in the hospital, we know that they got these drugs, and these efforts were made,” versus, “We’re not quite sure what happened. How long was the person down before they were found? A minute, two minutes? We don’t know.”
Romm: So right now, if you have an uncontrolled death, you would be ineligible to donate your organs?
Caplan: Correct. … [If] you signed a donor card and went into the registry—probably between 30 and 60 percent of Americans sign up, depending on the state—you probably figure, “Well, I have a pretty good chance of being an organ donor when I die, because I signed up.” But you don’t. The current pool of donors can only come from people who die of brain death, on life support, in a hospital, and they don’t have any other conditions like cancer that exclude them … or having your heart attack inside the hospital. That’s rare. So the number of people who die that way is actually tiny.
Romm: What’s the rationale for those restrictions?
Caplan: For one thing, we didn’t really have the preservation techniques to try outside the hospital for a long time. It wasn’t possible. For another, I think people felt the organs might get damaged too quickly and weren’t any good. Now we’re starting to understand we’ve got a half hour to an hour, depending on the organ, to preserve it. That wasn’t well understood for a long time.
And then there’s custom. Tradition just has it that your organ donor pool comes out of people who are in the hospital. That’s where the organ-procurement people go and make requests. You have time in the hospital to go through considerations of organ donation with somebody who’s brain-dead but still on life support.
But if you start thinking about the intermediate option of preservation, then you don’t have to be in that setting. So by putting this paper out, we’re saying that it’s perfectly fine with us if you want to try and ask for organ preservation in order to think about organ donation later. That would be okay. … People keep asking, what are we going to do about transplants? Well, this is the option that would get you into a much bigger set of potential people.
Romm: So how would your proposal work?
Caplan: So let’s say an average person, a 49-year-old man, is just sitting at home and he has a massive stroke or a massive heart attack. And his relatives call the EMTs and they get there within 10 minutes, if we’re lucky. And they try to resuscitate this person and they look at all his vitals. They pronounce him, and they say, “We’re so sorry, he’s died from a heart attack right here. But we want to ask you something, and we know it’s tough, but it will create some options for you: Would you consider allowing us to try and preserve his organs so that you can consider organ donation later? We have some equipment that would maybe allow us to preserve his organs until we get him back to the hospital, and when there, you could talk about organ donation with us when you’ve had a chance to accept this terrible thing that’s happened.” So they’re saying, “We know you’re vulnerable, we know this is probably the worst moment of your life, we don’t want to get into organ donation but we want to save that as an option here.” And the people in the house could say, “No way, forget it,” or they could say, “Okay, we’ll come to the hospital a little later and talk to you about this, but right now we’re just going to cry.”
Romm: What would be the process of preserving the organs?
Caplan: Basically you have to make sure the organs don’t get oxygen-deprived. What you’re trying to do is use artificial technology—the whole trick is circulating blood through the organs. It depends where you are and what kind of preservation intervention you can do. Sometimes you can just put somebody on a drug that will keep the organs okay for another hour, or sometimes you can put them on a mini heart pump. Some places have that in a special ambulance to take them back. It all depends on where they’re going and what’s around. If you’re in rural Oklahoma, you might not get much—it could be a three-hour drive to a community hospital and they’re not really set up to manage it.
Romm: At what point would the second step kick in?
Caplan: That’s when the organ-procurement people would come in. The family would come in, and they’d talk to them and say, “We want to talk to you about organ donation. Did this person have an organ-donor card? Do you know if they wanted to do this? Is there any reason you have to think that they don’t want to do this?” It would be the usual discussion that takes place now when somebody’s brain-dead.
Romm: How soon after death would that conversation take place?
Caplan: It would be up to the family to say, “We’re coming in two hours, or three hours, or six hours.” They’re probably not going to hold [the body] there for two weeks. The family is going to be told, “We’re talking them to County General, you come in when you’re ready and we’ll have the discussion about what you’d like to do.”
Romm: If someone was registered as an organ donor but died outside the hospital, would you still have to go through this process?
Caplan: Yes. They’d still go through it. The law says in some states, if you signed up, you’re good to go, you don’t need anyone else’s permission. The reality is, the doctors and nurses are almost always talking to the family. They know they’re bereaved. You’re dead, and they’re trying not to do anything that the family doesn’t want, even if you said you want to do it. That’s normally where the organ-procurement person comes in and says, “Look, he really wanted to do this. He signed his card. I know you really have reservations, but shouldn’t we do what he wanted?” So that’s how that goes. Families de facto get the right to veto, but there’s nothing new about our proposal that changes any of that. That’s just the backdrop of organ donation requests. Families hold a veto even though, legally, they probably don’t have the authority.
Romm: You and your colleagues wrote that when a death is unexpected, it can affect a family’s capacity to make decisions about organ donation.
Caplan: When you have a death in the home, we were saying it may be even more difficult and emotional [than in a hospital]. It could be an unexpected death, it could be a gunshot, it could be some accident. So we’re trying to say, “Let’s not ask them for organ donation right on the spot. Let’s just ask for preservation. Let’s be respectful.” These people are traumatized, the family members. And they’re not thinking, “Does Joe have an organ donor card?” They’re thinking, “What the hell happened to Joe?” We think, ethically, they’re more vulnerable outside the hospital with these unexpected deaths, where all of a sudden your friend or your family member’s died. So we didn’t want to push the organ donation in that setting. It just seems too hard for people to do it. Preservation is still tough, but at least it says, “You’ll figure out after a couple hours, did he want to be an organ donor?” It goes a little more gently.
Romm: In the paper, you talk about “decoupling” the death pronouncement from the conversation about donation. Why is that important?
Caplan: A lot of studies show that if you don’t leave time between saying, “Your loved one died,” and, “Can I have his organs,” people tend to say no. They want to adjust to the fact that death has come. They need time to accept it. We’re trying to make it not as intrusive.
The permission or authorization to preserve is trying to say, “We know you’re in shock, we know you’re emotionally upset, so we’re asking you to just authorize us—not the full consent, but to authorize us—for preservation. We’re not going to harm the body, nothing’s going to happen, it just gives you a choice later, if you can cope with even that level of an inquiry.”
We’re not unaware of the fact that we’re going to be asking people for something when a loved one has just died. … It’s still a hard thing to even ask about, but it gives people in the long run more choice and more opportunity to get some redemption out of a death. Which is the good part of being a donor. You feel like, well, something good happens.