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12:04 am
Mon June 24, 2013

Proposed Changes In Organ Donation Stir Debate

Originally published on Mon June 24, 2013 8:55 am

The nation's organ transplant network will consider a controversial proposal Monday to overhaul the guidelines for an increasingly common form of organ donation.

The board of directors of the United Network for Organ Sharing will open a two-day meeting at the organization's headquarters in Richmond, Va., to consider new guidelines for donation after cardiac death.

Donation after cardiac death involves removing organs minutes after life-support has been stopped for patients who still have at least some brain activity.

The approach has long been controversial for a variety of reasons, including whether doctors wait long enough after life-support is stopped to know for sure whether all brain activity has ceased. Most organ donors now are brain dead.

The new guidelines would change the official name of donation after cardiac death to "donation after circulatory death."

They're generating debate over when the possibility of organ donation should be raised with patients or their families. The guidelines say local hospitals and organ procurement organizations should decide individually how to handle that question.

"I'm worried about it," says Dr. Stuart Youngner, a bioethicist at Case Western Reserve University, noting that there's long been a clear line between the decision to discontinue care and to donate organs.

"From the beginning the organ transplantation establishment has recognized that you must keep them separate," Youngner says. "You must keep the people who are taking care of and making decisions about the potential donor separate from those who are trying to get an organ to put it into the recipient."

But the UNOS committee proposing the new guidelines says exactly how to handle that process is best decided on a case-by-case basis because local values vary, as do the circumstances of individual cases.

"The best way we felt to handle the very delicate decisions about approaching families was to have the hospital and the organ procurement organization work together to decide in individual circumstances how best to approach a family," says the University of Pittsburgh's Christopher Hughes, a transplant surgeon and a committee member.

In addition, when it comes to donations after cardiac death, decisions have to be made quickly. "The organs have a very short time period — measured in minutes — after the pronouncement of death for those organs to be removed to where they can still be transplanted," Hughes says.

The proposal is raising concerns among advocates for the disabled. "Pressure could be brought to bear on people to give up on saving their lives and give away their organs," says Diane Coleman of the group Not Dead Yet, which seeks to protect rights of the disabled.

And Stephen Mikochik, of Temple University's law school, worries about certain situations, such as when parents rush to the hospital and discover a child has suffered severe brain injuries in a car accident.

"You're going to be extremely upset. And if a physician comes in and says, 'Look, the prognosis doesn't look very good.' And then a procurement officer comes in and says, 'Well, look, let's make something meaningful out of this.' You might decide right then to agree to take the person off life-support so some of the organs can be harvested," says Mikochik, who works with the National Catholic Partnership on Disability.

"The problem is that it could well be that your child will, you know, regain some consciousness," he says. "There's just no telling at that point."

For his part, Hughes says the proposal includes other changes aimed at protecting potential donors. Organ bank workers, for example, would be prohibited from getting directly involved in giving patients drugs to preserve their organs.

"The idea of the potential for exploitation of a possible donor — we don't want that to even be a perception that that is the case," Hughes says.

As if all that's not controversial enough, the board is also considering a proposal to revamp the rules for allocating kidneys. For more about that read this previous post.

Copyright 2013 NPR. To see more, visit http://www.npr.org/.

Transcript

RENEE MONTAGNE, HOST:

This is MORNING EDITION FROM NPR News. I'm Renee Montagne.

DAVID GREENE, HOST:

And I'm David Greene. Good morning.

We are looking this morning at a sensitive debate about organ donation. In Richmond, Virginia today, the nation's organ transplant network begins considering some new policies: they're focusing on how to allocate kidneys and other organs fairly, and also how to increase donation overall.

NPR's Rob Stein tells us more about one proposal that is sparking an unusually intense debate.

ROB STEIN, BYLINE: Since doctors started taking organs out of one person to transplant them into another, there's always been one big fear about organ donation.

Stuart Youngner is a bioethicist at Case Western Reserve University.

DR. STUART YOUNGNER: You know, I'm very sick. They could save me but they're not going to so they can get my organs. I mean, in its rawest form, that's the fear.

STEIN: So there's always been one clear rule: No one should even raise the possibility of a patient becoming an organ donor until either they're clearly dead or there's no hope and either the patient or their family has decided to discontinue care.

YOUNGNER: From the beginning the organ transplantation establishment has recognized that you must keep them separate. You must keep the people who are taking care of and making decisions about the potential donor separate from those who are trying to get an organ to put it into the recipient.

STEIN: But that might be about to change. The United Network for Organ Sharing, which runs the transplant system, is considering new guidelines. Guidelines that would say: Individual hospitals and their local organ banks can decide for themselves what to do.

Christopher Hughes of the University of Pittsburgh is on the committee making the proposal.

DR. CHRISTOPHER HUGHES: The best way we felt to handle the very delicate decisions about approaching families was to have the hospital and the organ procurement organization work together to decide in individual circumstances how best to approach a family.

STEIN: The guidelines deal with a specific type of organ donation that's becoming increasingly popular. It involves people who are not yet brain dead. But they can become donors after being taken off a ventilator to let them die. In that scenario, a lot of decisions have to made very quickly.

HUGHES: The organs have a very short time period - measured in minutes - after the pronouncement of death for those organs to be removed to where they can still be transplanted.

STEIN: But the proposal is setting off alarm bells. Some bioethicists and advocates for the disabled worry patients or their families may get feel pressured to make decisions too quickly.

Stephen Mikochik works with the National Catholic Partnership on Disability.

STEPHEN MIKOCHIK: Just think about coming into an ICU and seeing your child as a result of an automobile accident on life support. You're going to be extremely upset. And if a physician comes in and says, look, the prognosis doesn't look very good. And then a procurement officer comes in and says, well, look, let's make something meaningful out of this. You might decide right then to agree to take the person off life support so some of the organs can be harvested. The problem is that it could well be that your child will, you know, regain some consciousness. There's just telling at that point.

STEIN: Bioethicist Stuart Youngner says the proposal marks the latest example of organ banks becoming increasingly aggressive.

YOUNGNER: In one of the hospitals that I'm affiliated with, they tried to be introduced to families early not as organ procurement organizations but as end-of-life-care specialists.

Another bioethicist - Boston University's Michael Grodin - says such tactics could end up undermining the whole organ donation system.

DR. MICHAEL GRODIN: Patients in general might develop a lack of trust in the system and actually it may backfire and have people be less likely to donate because of concern about people coming in and wanting their organs.

STEIN: For his part, Hughes says the proposal includes lots of other changes aimed at protecting potential donors. Organ bank workers, for example, would be prohibited from getting directly involved in giving patients drugs to preserve their organs.

HUGHES: The idea of the potential for exploitation of a possible donor, we don't want that to even be a perception that that is the case.

STEIN: The organ network's board of directors is meeting for two days beginning today. To try to decide where to draw that fine line - between honoring donors' wishes and saving lives, and protecting seriously ill patients.

Rob Stein, NPR News. Transcript provided by NPR, Copyright NPR.