Understanding the Organ Transplant Process

MS. DIANE REHM

11:06:53
Thanks for joining us. I'm Diane Rehm. Doctors insist Vice President Mr. Dick Cheney did not get special consideration for his heart transplant. The 71-year-old former vice president had been on the waiting list for 20 months before a suitable heart became available, but his age has raised controversy over how organs are allocated.

MS. DIANE REHM

11:07:21
Here in the studio with me to talk about the procedures and ethics surrounding transplants, president and CEO of the United Network for Organ Sharing Foundation Mr. Walter Graham and Robert Veatch, he's professor of medical ethics and a heart surgeon at Georgetown University. We do welcome your thoughts, your comments. Join us on 800-433-8850. Send us your email to drshow@wamu.org Join us on Facebook or Twitter. Good morning gentlemen.

MR. WALTER GRAHAM

11:08:04
Good morning.

DR. ROBERT VEATCH

11:08:04
Good morning.

REHM

11:08:04
Good to have you here. And joining us by phone from Amherst, Mass. is science journalist Mr. Dick Teresi. His new book raises questions about the business of organ donation. The title is "The Undead: Organ Harvesting, the Ice-Water Test, Beating Heart Cadavers – How Medicine is Blurring the Line Between Life and Death." And I do look forward to hearing your questions and comments. Mr. Walter Graham, how unusual is it for a person of Mr. Dick Cheney's age to receive a heart transplant?

GRAHAM

11:09:01
Well, for heart transplants, over the last several years, there have been a growing number of patients over the age of 70. I think in the last couple of years, it's been around 300 or so who have had transplants over the age of 70, some over the age of 80. And so as the population ages, patients who are older and older are qualifying to become organ transplant recipients.

REHM

11:09:27
What happens then to those who are in younger groups who are in need of heart transplants?

GRAHAM

11:09:35
The organ allocation system that UNOS operates under contract with the U.S. Department of Health and Human Services focuses on the medical urgency of the patient.

REHM

11:09:51
I see.

GRAHAM

11:09:51
So once a doctor decides a patient needs a heart transplant, they're placed on the national waiting list and then medical factors are considered so that those who are most in need at the local level nearest where the heart donor is are prioritized to receive transplants. So it's a matter of medical need and that's based on what's in the law. The National Organ Transplant Act requires that organ allocation be done on the basis of medical criteria.

REHM

11:10:21
So what are the other factors that go into whether an individual receives a heart transplant?

GRAHAM

11:10:28
Well, it's pretty much driven by the urgency factors as I mentioned. There are a lot of different considerations for that that are all based on physiological needs of the patient. Essentially, it's broken into three status codes. The most urgent status is for patients generally who are hospitalized because they are so sick they have to be on say continuous ventilation or some sort of continual monitoring device or device assistance.

GRAHAM

11:10:57
And so those patients are probably nearer death than the other patients. That is why they're prioritized. Then, of course, there has to be consideration of the size of the heart as well as the blood type. Now, if there are two patients who are equally situated in all of those considerations, then waiting time will come in as a tie-breaker.

REHM

11:11:19
And tell me, I gather that the vice president, the former vice president had waited some 21 months. Is that an unusual amount of time or is it sort of normal?

GRAHAM

11:11:37
Well, I'll answer the question by saying it's longer than the average however...

REHM

11:11:41
Longer?

GRAHAM

11:11:41
...right, however I want to emphasize that because the allocation system is based on urgency that that's really not a very relevant statistic. What's relevant is how long a person waits in a particular status. As far as gauging whether or not the system is fair, if someone were to come into the system and be placed on the waiting list in a very urgent status, they would receive consideration before others who might have been waiting longer in a lower status. And so that's why average waiting time really doesn't fairly gage how the system is operating.

REHM

11:12:10
And how does your organization actually get involved?

GRAHAM

11:12:16
Well, UNOS is a not-for-profit corporation that includes as members all of the hospitals that do transplants in the country. There are 58 organ procurement organizations whose territory is assigned by the federal government. Those OPOs actually recover the organs and the transplant centers transplant. Well, UNOS is sort of in the middle, if you will, and so we maintain the national waiting list.

GRAHAM

11:12:42
Everybody in the country who is waiting for an organ is on our list and then this is through the organ procurement and transplantation network that's established by law. Then when a donor is available, that information is entered into the computer system by the organ procurement organization, matched with the patients who are on the waiting list and then the organs are allocated by a priority list. And then the organs, the hearts in this case, are offered to the various transplant centers.

GRAHAM

11:13:11
Now, the doctors at each center have the opportunity and really the responsibility to decide whether a particular heart from a particular donor suits their patient and so they may or may not accept that offer but that's a medical decision. We prioritize it based on the policy considerations that I mentioned.

REHM

11:13:29
And turning to you now, Dr. Robert Veatch, talk about the role the physician plays and the criteria you have for determining brain death.

VEATCH

11:13:45
Well, I've worked on brain death for 40 years, it's important. Just so we're clear, I'm not a physician, I'm a medical ethicist addressing questions of when a society should treat someone as dead. For the last 40-some years since 1968, we've had clear criteria of when someone should be called dead by brain criteria, when there are no reflexes, no breathing and this is sometimes, but not always, confirmed with an electroencephalogram.

REHM

11:14:34
And turning to you, Dr. Samer Najjar, I know that you are director of the heart failure and transplant program at MedStar Washington Hospital. Tell me how you make those decisions.

DR. SAMER NAJJAR

11:14:53
Well the big decision, first of all, when a patient is referred is whether or not this is somebody who is going to need a heart transplantation. So we review their cardiac condition to see how bad the heart is. Usually, heart transplantation is done on somebody whose heart has sustained enough injury that it is very weak and not able to pump blood to the rest of the body.

DR. SAMER NAJJAR

11:15:14
If we determine that the person's heart is weak enough that it needs transplantation, then we launch into a very detailed evaluation that has two major components. The first component is that we look at every other organ body in the system because we need to be able to understand how those organs are functioning because after the transplantation the transplantation itself and the medications are going to influence these organs and the function of these organs is going to influence the outcome of the person.

DR. SAMER NAJJAR

11:15:48
So we do a very detailed medical examination, but in addition, another very important part of the evaluation is we do a very detailed psycho-social assessment. We need to understand everything we can about not just the patient in his or her environment, but also about the family and support that they have because these are going to be critical elements for the long-term survival and for doing well after a heart transplantation.

DR. SAMER NAJJAR

11:16:19
So this evaluation involves numerous people, it's not just one or two people and there's a multi-disciplinary team of people that are going to come together at the end, review all that information and decide whether we think this person is going to benefit from heart transplantation and if so, are they going to be eligible for it.

REHM

11:16:34
Now, are you also working with the medical ethics team at the same time you're making those decisions?

NAJJAR

11:16:47
There are ethical issues that arise on patients, not all of them. When there are ethical issues that arise, then we do involve a bio-medical ethicist.

REHM

11:16:56
Give me an example.

NAJJAR

11:16:57
So for example, the issues come up usually in the early stages of the evaluation. Somebody who has very bad heart failure, but there are questions as to whether that person is going to benefit from transplantation and perhaps more importantly there may be differences between what the patient and the family wants and what the team is recommending.

NAJJAR

11:17:17
So if the team, for example, thinks they're going to recommend that yes or no this person would benefit from a transplantation, but the patient and/or family have disagreement with that, then it's very important to involve a bio-medical ethicist to try and tease out what are the issues and be able to come to a resolution.

REHM

11:17:34
And as you're trying to tease out those issues how might they come up Dr. Veatch and how do you tease them out?

VEATCH

11:17:46
Well, if the patient or the family member representing the patient decides against a transplant, normally that would be decisive. Patients have the right in this country to refuse any medical procedure and surely for a procedure that uses a scarce organ, we're going to respect the patient who says no. It's a little more complicated in certain cases where the patient wants the transplant, but the transplant team doesn't approve. Normally, we would respect the transplant team's decision not to proceed.

REHM

11:18:27
All right. I want to get back to those issues after a short break. Robert Veatch is professor of medical ethics at Georgetown University. We'll take a short break and be right back.

REHM

11:20:04
And as we talk about heart transplants, organ transplants generally speaking we do invite your calls, 800-433-8850. Joining us by phone from Florida is Dr. Samer Najjar. He's director of the heart failure and transplant program at MedStar. Here in the studio, Mr. Walter Graham. He's president and CEO of UNOS Foundation, which I gather coordinates many transplants that take place around the country, listing donors as well as those in need of transplants. Also Dr. Robert Veatch. He's professor of medical ethics at Georgetown University.

REHM

11:21:01
Robert Veatch, you want to talk further about the age question. How do you see that issue of older versus younger? Obviously, there are never two identical situations, but is this question of age worthy of discussion where the vice-president is concerned?

VEATCH

11:21:30
As of now, for most adult organ transplants, age is not specifically taken into account. There are proposals that we ought to consider age for kidneys and also for hearts. The law requires that we consider both efficiency and equity. The amount of good we can do and the older a person is when they get an organ as a general rule, the fewer years the transplant will survive. But we also have to consider equity or what philosophers would call justice or fairness.

VEATCH

11:22:12
Most people, when they first think about the problem, assume fairness means everybody gets an equal shot at an organ regardless of your age. Some of us have been developing what sometimes is called a fair innings argument, which is that the younger you are when you need a transplant, really the worst off you are in life. You'd much rather need your transplant at 70 than at 20.

REHM

11:22:40
Right.

VEATCH

11:22:41
So some of us are arguing that fairness really requires some kind of priority for younger people. Now the problem is, working out exactly how we would begin to take age into account without having it totally dominate an allocation of formula.

REHM

11:23:00
How do you feel about that, Dr. Najjar?

NAJJAR

11:23:05
I don't disagree with that, but I think there is an important consideration to take when we're thinking about heart transplantation. If we go back in time, initially when we started giving heart transplantation, we sort of had a lower age than what we have now. And so in the past, you know, some centers would say we would not transplant somebody over the age of 60 or somebody over the age of 65. And we have been progressively liberalizing that age cutoff.

NAJJAR

11:23:30
The reason for that, what's driving this is really outcomes. In other words, the reason in the past we said, well, we're going to use a relative age cutoff of X had to do with we thought, well, older people are not going to do as well with heart transplantation. And the reason, overtime we've seen that we're giving older and older people heart transplant is because in the appropriately selected patients what we're learning is they can do as well as other people. And that's why we're seeing this liberalization of the age so that nowadays age is a relative (word?) indication.

NAJJAR

11:24:03
So we look at age, but we don't only focus on age. We also want to see what is the physiologic as opposed to just the chronologic age of the person in determining whether or not that we think they're going to do well with heart transplantation.

REHM

11:24:15
At the same time one would also, I would think, take into account the person's prior history. Vice president had had five situations with his heart, Dr. Veatch. And does that make him a better or a worse candidate for a heart transplant?

VEATCH

11:24:43
Well, both the fact that we're getting better outcomes with older people and the specific history of a patient, history of heart attacks for example, are relevant to determining how efficient the transplant will be, how much good we'll get out of it. The ethical issue that I think is being neglected is what is required by the standard of fairness or equity. So we don't want to just base our decision on how good the outcome will be. We want to treat everybody in a public system like a transplant system fairly.

VEATCH

11:25:24
And it's very hard to figure out exactly what counts as fairness when we're focusing on age. I'm arguing it's not just everybody gets an equal shot, but we ought to consider that people who are sick at a very young age have a unique kind of claim to being worse off, and therefore deserve some priority.

REHM

11:25:50
And what about cost? How much does a heart transplant cost, Dr. Najjar?

NAJJAR

11:25:59
The heart transplantation hospitalization costs probably about 200 to $300,000. That is the initial hospitalization. But then after the heart transplantation, the patients have to be on immunosuppressive medications for the rest of their life. And it's the cost of these medications that are very important in the long term. In addition, when a patient has a heart transplantation, what happens is there's a foreign object that's placed in their body. And that's why we need to suppress the immune system.

NAJJAR

11:26:32
But the only way to find out if there's a rejection, if the body is rejecting the heart is we have to do biopsies, we have to do frequent sonograms. So there are medical procedures over the long term that should be factored into the cost, in addition to just the baseline cost of the initial hospitalization and initial surgery.

REHM

11:26:50
Mr. Walter Graham, are people who are uninsured on the list for transplantation or are they simply left off?

GRAHAM

11:27:06
Well, let me answer that with a little bit of a longwinded answer describing how the system actually operates.

REHM

11:27:11
Sure.

GRAHAM

11:27:12
So UNOS is operating the order procurement and transplantation network established by law. The way that system operates is that as the law and the regulations say as soon as the hospital determines that a patient is a candidate for a transplant they're placed on the list. UNOS gets involved after they're placed on the list. And so the determination as to whether or not a patient will be accepted by the hospital as a patient or in need of a transplant, those things are decided at the local hospital.

GRAHAM

11:27:42
Now I know that there have been many situations where hospitals have taken patients who did not have insurance and they have provided care for them without that insurance coverage, but that's not something that the network gets involved in. We take patients after they've been placed on the list.

REHM

11:27:59
Dr. Najjar...

NAJJAR

11:28:00
I can comment on that.

NAJJAR

11:28:01
...what if a patient were on that list, a heart became available but the patient has no insurance. How does your hospital deal with that?

NAJJAR

11:28:17
Well, as I mentioned, you know, we do a very comprehensive evaluation and that takes a while. That's not one or two days. That's weeks and sometimes months.

REHM

11:28:23
So how would be having -- sure.

NAJJAR

11:28:24
During that time – yep, during that time, one of the other issues we look at is the issue of insurance. And for us, it's not just a yes or no answer, do they have insurance or do they not have insurance. If they have insurance, that's fine. If they don't have insurance, then we have a financial counselor whose full time job is to actually review the patient's history and see what they may be eligible for. 'Cause oftentimes, in fact the majority of the patients that we get who do not have insurance, they don't have insurance because they've neglected it or they were not aware of it or were not counseled about it.

NAJJAR

11:28:58
Yet when we work with them, we are able to actually get them some sorts of benefits. That's for the people who don't have insurance. I would also like to add that even for those who have insurance it's also not a yes or no answer 'cause you may have insurance that will cover your hospitalization but you may not have the appropriate coverage for medications, prescriptions, et cetera, which over the long term are equally important. And so our team will work with the patients upfront to try and resolve these issues.

NAJJAR

11:29:24
And it it's important that by the time they get on the list that we have some determination as to how we're going to be able to support the patient be it they have their own insurance or what the hospital's going to contribute. If we have questions, if we're not fully convinced that the patient is going to be able to have financial support to go through the process and do well long term then we have questions about the long term outcome of this person. And we should really be questioning whether we should list them.

NAJJAR

11:29:56
I have to say that people are actually quite proactive, some people are very creative, some people do fundraisers and they're able to come up with the funds that are needed for the procedure and for the long term maintenance.

REHM

11:30:10
This may be a hard question, Dr. Najjar, but it is kind of a bottom line question. What percentage of those in need of a heart transplant, and I'm talking about any kind of a transplant really, are turned away because of lack of funds?

NAJJAR

11:30:39
I think that the majority of people who end up being turned away end up being turned away for either psychosocial or medical issues. I think those who are turned away for strictly financial issues are actually a minority of those who are turned away. But it is true that there are some people who at the end of the day when nothing can be secured they are not eligible for transplantation for (unintelligible) so that does happen.

REHM

11:31:00
Dr. Veatch, do you want to comment?

VEATCH

11:31:02
Well, what has been described is accurate. For kidneys, for example, people are almost certainly going to qualify for Medicare. So some insurance is available. That's not necessarily true for other organs. I think it's a disgrace that we have an insurance system in this country that doesn't automatically cover everybody.

REHM

11:31:28
So you would like to see anyone who needs a transplant receive one and be covered by insurance.

VEATCH

11:31:40
The far more fundamental issue is everybody ought to have basic health insurance in this country. And that basic health insurance should normally cover the standard therapeutic transplants. Not experimental things necessarily, but standard transplants.

REHM

11:31:55
So you're talking about liver, you're talking about kidney, you're talking about lung. And, as Dr. Najjar points out, I mean, we're talking hundreds of thousands of dollars in each case. And you believe anyone who needs a transplant should be covered?

VEATCH

11:32:19
Anyone who needs a standard transplant should be covered. In some cases, particularly with kidneys, it will actually save us money if there is a transplant.

REHM

11:32:28
How so?

VEATCH

11:32:30
Because the cost for maintaining a patient with a kidney transplant...

REHM

11:32:37
On dialysis.

VEATCH

11:32:38
...on dialysis are more than the cost of maintaining someone including the cost of the transplant.

REHM

11:32:47
Robert Veatch. He's professor of medical ethics at Georgetown University and you're listening to "The Diane Rehm Show." Mr. Walter Graham, you wanted to add to that.

GRAHAM

11:33:01
With respect to kidney transplantation, all patients who have end stage renal disease are covered by Medicare. That means for dialysis as well as transplantation. And so if somebody, as Dr. Veatch says, receives a transplant that reduces costs overall. However, if they are unable to pay for their immunosuppressive drugs, which are not covered after a certain time under Medicare and they lose their transplant, they go back on dialysis which is more expensive.

GRAHAM

11:33:27
And we would encourage those drugs to be paid for over the patient's lifetime so that they are able to maintain their transplanted organ and not have to go back on the list and deprive someone else of a needed transplant.

REHM

11:33:41
How often does the need for a second transplant arise?

GRAHAM

11:33:46
I think for kidneys, it's around 5 to 10 percent.

REHM

11:33:49
I see. All right. Let's open the phones, 800-433-8850. First to Maureen in Hyattsville, Md. Good morning to you.

MAUREEN

11:34:03
Good morning, Diane. Thank you for taking my call.

REHM

11:34:06
Surely

MAUREEN

11:34:06
I have, well, I hope, a simple question and that's how many people either total or perhaps just last year have got transplants? And then how many were Mr. Dick Cheney's age?

REHM

11:34:24
I'm sorry. Could you repeat your question? I can barely understand you.

MAUREEN

11:34:32
Oh, I'm sorry. I'm asking how many people have had heart transplants and how many of those were Mr. Dick Cheney's age?

REHM

11:34:44
Thank you so much. Mr. Walter Graham.

GRAHAM

11:34:47
Last year, there were 2300 heart transplants and 95 of those were for patients who were 70 or older.

REHM

11:34:56
95.

GRAHAM

11:34:57
95.

REHM

11:34:57
And did all of them have insurance coverage?

GRAHAM

11:35:03
I don't have that information.

REHM

11:35:04
You don't have.

GRAHAM

11:35:05
No, but I do know that Medicare...

REHM

11:35:06
So it sounds as though it really is a minority who are the former vice president's age or older.

GRAHAM

11:35:18
Yes, I'd say that the predominant age is between say 50 and 65 for heart transplantation. Above 70 is, as these numbers indicate, it happens relatively rarely.

REHM

11:35:32
And would that indicate, in any way, that those who are older have somehow been able to move up the list rather illogically?

GRAHAM

11:35:48
I don't think so. As I said earlier, I believe that the list priority is determined on medical need, not based on a person's age. Once the person is placed on the waiting list our system evaluates them based on need.

REHM

11:36:02
Robert Veatch.

VEATCH

11:36:03
I'm quite confident that Vice-President Cheney did not move up the list because of any special status. The fact that he waited as long as he did would support that.

REHM

11:36:16
How many months, years do people ordinarily wait for transplant of heart, Mr. Walter Graham?

GRAHAM

11:36:28
Well, it's around 12, 14 months on average. But again I want to emphasize that that...

REHM

11:36:35
So it could be a lot longer, 12 to 14.

GRAHAM

11:36:37
It could be longer, it could be shorter. Sure.

REHM

11:36:40
And he waited 21 months. Robert Veatch, would you have argued against a transplantation for a person who had had five previous heart attacks?

VEATCH

11:36:59
Not necessarily. Right now that is taken into account when a decision is made by the patient and the transplant team to list the person. They presumably made that evaluation and Mr. Cheney decided it was in his interest to go through the rigors of the transplant surgery. I believe that until we have a formal debate about age, a patient should have the right of access regardless of age.

REHM

11:37:34
Robert Veatch. He's professor of medical ethics at Georgetown University. We'll take a short break here and be right back.

REHM

11:40:04
And thus far in the discussion, we've been focusing mostly on the recipients. Now let's turn this discussion somewhat to the donor. And joining us now by phone from Amherst, Mass. is science journalist Mr. Dick Teresi. His new book raises questions about the business of organ donation. The title of the book is "The Undead: Organ Harvesting, the Ice-Water Test, Beating Heart Cadavers--How Medicine is Blurring the Line Between Life and Death." Good morning to you, Mr. Dick, thanks for joining us.

MR. DICK TERESI

11:40:53
Thank you.

REHM

11:40:54
Tell us about the decision you described in a Wall Street Journal article not to check the box for organ donation when you renewed your driver's license.

TERESI

11:41:08
Well, first of all, there are three different organs and, perhaps, you're guests can agree or disagree there. Living kidney donors because you have two kidneys you can live with one.

REHM

11:41:16
Right.

TERESI

11:41:17
You can give a kidney away while you're still alive.

REHM

11:41:19
Sure.

TERESI

11:41:20
Then there's a smaller group who die via the cardio, good old heart and lung death and they're starting to harvest more organs from these kinds of dead people just as the first heart transplant was taken from a cardiopulmonarily dead woman. But the major group of donors follow the category of the brain dead. And so I was curious because I was writing a book about death per se not about transplants at all, but how does brain death vary from good old heart lung death.

TERESI

11:41:55
And when I got my license, the clerk asked me, do you want to be an organ donor? And I said, I don't know. And she said, well, you sure, you know, she was encouraging me. And I said, what do you know about it? And she didn't know anything about it. So I went out to find out what's the difference between a brain-dead person and a plain vanilla dead person. And I'm not an ethicist so I'm not making any judgment on it, but there's a tremendous difference.

TERESI

11:42:21
The Presidential Commission on Bioethics in 2008 actually made the statement, quote/unquote, "That some dead people are less healthy than others." Now the idea of some dead people being healthier is kind of foreign to me. And then I also found in the literature that when you were brain dead, doctors have to be careful of diabetes mellitus and other complications of death. Now you would think that you would be through with complications when you died, so I looked into to find out what happens with a brain-dead person after they're declared brain dead.

TERESI

11:43:00
And, you know, we have all this hysteria about pulling the plug. The problem here is not that the plug is pulled, but that it's re-inserted. The final test for brain death is called the apnea test where the ventilator is disconnected to see if the patient can breathe on his own. And if he can't, then he's brain dead. But immediately, the ventilator must be turned back on again so that the heart will continue to beat and keep the organs refreshed. And a brain-dead organ donor can stay alive or -- alive is the wrong word, obviously.

REHM

11:43:35
Yeah.

TERESI

11:43:36
The language fails us when it comes to the brain dead and with organ donation. But the organs have to be kept healthy until they're excised from the body.

REHM

11:43:45
Sure, sure. So...

TERESI

11:43:47
So we find out that the brain dead have much in common with you and me. I mean they're breathing and their heart's beating. They get bed sores. They can have heart attacks and they can be defibrillated back into whatever state they were. And brain-dead pregnant women can be kept on a ventilator and gestate their babies and 22 healthy babies have been delivered via this method, one woman lasting 107 days after she was declared dead.

REHM

11:44:17
Mr. Dick Teresi, what is your concern? Are you suggesting that many or some or a few doctors may be moving too quickly to declare someone dead and, thereby, moving too quickly to harvest organs?

TERESI

11:44:42
No, no.

REHM

11:44:44
What are you concerned about?

TERESI

11:44:48
It's not a matter of a concern. I'm a journalist describing a situation that I didn't know about and many people did not know about. The implications of -- when the Harvard Committee met as Dr. Veatch talked about in 1968 and came forth with a new definition of death one wonders why do you need two definitions. Can you have two definitions in a logical way?

REHM

11:45:13
All right, Dr. Veatch, do you want to comment?

VEATCH

11:45:17
Well, it's clear that we have only one definition of death, but it can be measured in two different ways. It can be measured by loss of circulation, it can be measured by loss of brain function and the vast majority of people, including the President's Council that Mr. Teresi referred to, believe that if the brain is gone, we've lost essential integrating functions of the body and the body should be treated as if you were dead.

VEATCH

11:45:52
A minority, maybe ten percent of the population, believe you're really not dead until circulation is irreversibly lost. And they have every right to insist that they not have organs procured unless they're pronounced dead by circulatory criteria. But the vast majority of us and the vast majority of organs are procured because we believe that if your brain is gone you're dead and should be treated as such.

REHM

11:46:26
Dr. Najjar, how do you see it?

NAJJAR

11:46:30
I totally agree. I think, you know, what Mr. Teresi had mentioned that the ventilator is unhooked and then it's re-hooked again the reason that's done is we're trying to gather the information. In other words, we need to find out is there brainstem function, is the brain being active, is the brain and the reflexes functional because this is information that needs to be given to the family so that they can make a decision.

NAJJAR

11:46:50
And according to what Dr. Veatch just mentioned some people will say, well, listen, you know, we want to keep the course even though they're comatose, even they may be brain dead we're not interested in either donating or interested in withdrawing life support. And so I think that the first part that was mentioned -- this is a data gathering process that we're going through so we can put it all together and decide is the person brain dead, is not and that will help the healthcare team counsel and discuss with the family what are the next steps and the options.

REHM

11:47:23
And now suppose, Dr. Najjar, you have disagreement between the family of someone who has already marked off on his or her driver's license that they wish to be an organ donor, but the family says I'm not so sure.

NAJJAR

11:47:48
So the first part it's important to also note that actually the transplant team does not get involved in these discussions. These discussions are done by healthcare -- members of the team who are not part of the transplant team. We, the transplant team, only get involved after the decision is made. But, once again, if there are divergence of opinions in terms of what the patient wanted, what the family wants, what the medical team thinks is recommended at that point often times a bioethicist is involved.

REHM

11:48:20
I suppose the question comes down to if the emergency room doctors know that you are an organ donor are they going to work less hard to save you or more hard, Dr. Veatch?

VEATCH

11:48:40
I've never encountered a case where the separate team of physicians, the emergency team, often they're committed to doing what is needed to preserve the patient until the judgment is made that life support should be withdrawn. When and only when brain function is irreversibly lost death will be pronounced.

VEATCH

11:49:08
Now that gets us up to the point that addresses your question of what should happen if the patient and the family disagree. Really since the beginning of this discussion in the United States, we've been a society that leaves organ donation up to the individual patient and we feel very strongly that it's the patient's choice. The family has no legal or ethical right to veto a decision that a patient has made to be an organ donor.

REHM

11:49:39
But if the patient is no longer speaking for him or herself, but has something in writing, you will go with the patient's desire.

VEATCH

11:49:52
Technically, it doesn't even need to be in writing. It's much better if it is, of course.

REHM

11:49:56
All right.

VEATCH

11:49:57
But if we know the patient's wishes, we will follow what the patient says.

REHM

11:50:04
Dr. Najjar.

NAJJAR

11:50:06
I think also a more common scenario is when the patient has not expressed wishes and now the burden is on the family to try and decide what to do. And, therefore, one of the things that we try to advocate -- I hope that one of the things that are going to come out of this is there will be greater awareness about organ donation. And, hopefully, that way people can discuss with their families what their wishes are so when the time comes that decisions have to be made the family is aware of what was the person's intentions in the first place. And I think that will facilitate them making a decision.

REHM

11:50:41
And speaking of intentions, Mr. Walter Graham, here's an email from Tim who says, "As a donor, can I ask that my heart goes to a young person or to the mother of young children?"

GRAHAM

11:51:01
A person can direct a donation under the law to an individual, but not to a class of persons.

REHM

11:51:06
I see.

GRAHAM

11:51:07
And so I guess the specific question I'd say the answer is no to that question.

REHM

11:51:12
And how do you as an ethicist regard that question, Dr. Veatch?

VEATCH

11:51:17
Well, I think the current policy is exactly right. We've always recognized the right of someone -- for instance, if someone is brain dead and somebody else in the family needs a kidney, it could be a directed donation. But aside from direction to an individual, we don't accept direction to a class. It would be chaos if we permitted that. We once had somebody who said, I want my organs to go to a good Catholic and the poor transplant team was thinking about how they figure out which Catholics are good Catholics. We can't do that because there could be directed donation by race or by religion. It just would be chaos and we can't accept that.

REHM

11:52:03
All right. To Annette here in Washington, D.C. you're on the air.

ANNETTE

11:52:09
Hi, I am very grateful you're having this show, Diane, because I think there's been a lot of noise around organ donation that has not been helpful and as someone who was a journalist I appreciate a good story, but I think this story has caused a certain kind of trauma to be put into the stew here on organ donation that is not helpful. The issue of fairness of distribution of organs that are available for donation, I think, would be dramatically reduced if in our nation we would change the choice architecture around organ donation.

ANNETTE

11:52:43
I speak with a certain amount of experience because my daughter recently received a lung transplantation. She's a young woman. She had to wait in line behind a number of older patients, but I didn't resent it one bit. In the hospital in which we were, there were patients with the same blood type who needed lung transplantation who were 40, 50 years older than my daughter and received those lungs before her.

ANNETTE

11:53:07
In fact, those lungs would not have been ideally suited to her. And often in the case of donations, you know, it's a very specific thing for each person. But I don't want to spend too much time on that because my big concern is that the whole concern about availability of organs could be dramatically, if not completely reduced in our country, if instead of the choice architecture now -- we have in place now in most states -- we would have choice architecture that caused people simple to opt out of organ donation rather than opt into it.

REHM

11:53:47
What do you think of that, Mr. Walter Graham?

GRAHAM

11:53:50
Well, that argument has been around for a long time and it's a societal argument as to whether or not our society is willing to have a presumption made about their wishes upon death. And so far that has not -- that's not held true.

REHM

11:54:05
Mr. Walter Graham of the UNOS Foundation and you're listening to "The Diane Rehm Show." Dr. Veatch, you wanted to comment.

VEATCH

11:54:16
What is being suggested by the caller sometimes out of a movement called libertarian paternalism says we ought to change the default so that one is a donor unless one opts out. The problem with that is everybody would have to be completely educated about this policy and it's unrealistic to assume that everybody would understand what the choice is. I much prefer the system we have where people opt in. And we're getting a very high percentage of organs today under that policy.

REHM

11:54:57
And finally to Crestview, Fla. Good morning, Jerry.

GERRY

11:55:03
Good morning, thank you for taking my call.

REHM

11:55:05
Sure.

GERRY

11:55:06
I just wanted to make a comment about insurance. It would be nice to see a program that, as a donor, I could purchase insurance to help cover the cost of the recipient and have that -- those premiums be a donation deductible as far as taxes are concerned. Because usually people who want to donate they kind of tend to be giving people.

REHM

11:55:33
Well, I think you raise an interesting point and that is, Mr. Walter Graham, does a family receive any compensation for the donation of an organ?

GRAHAM

11:55:50
No, in the federal law, it is against the law for there to be any valuable consideration given in exchange for organs and tissues. And that's just a flat statement in the national law.

REHM

11:56:03
Dr. Veatch, finally, do you expect changes in this approach to organ donation say in the next decade?

VEATCH

11:56:14
There is, and will continue to be, lively discussion. Many European countries have moved to an opt out system, but in the Anglo American countries as well as Germany I think we're deeply committed to the system where you have to be a volunteer, you have to be an actual donor or your family has to donate. I think that's the way it will remain.

REHM

11:56:42
And, finally, to you, Dr. Najjar, do you expect changes to the program?

NAJJAR

11:56:50
The program actually is not static, it's dynamic. There are changes that are introduced every so often based on -- and the changes involve not just the allocation scheme, but what are the criteria for acuity because that is evolving over time as we have alternative or additional methods that we have for treating advanced heart failure that can sustain these patients as they're waiting for a heart transplant such as a left ventricular assist device.

REHM

11:57:13
All right.

NAJJAR

11:57:14
And so...

REHM

11:57:15
I want to thank you all for joining us Dr. Samer Najjar, Mr. Walter Graham, Robert Veatch and Mr. Dick Teresi, thank you all so much. Thanks for listening, I'm Diane Rehm.
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