What exactly does it mean to be “brain dead?”

David Magnus, PhD, joins me in his office on the Stanford campus to talk about the ethical dilemmas around the concept of brain death, particularly as it relates to organ donation. This is an important deeper-dive companion piece to our AMA episode dispelling myths about organ donation.

Professor Magnus is the director of the Center for Biomedical Ethics at Stanford, the Thomas A. Raffin Professor of Medicine and Biomedical Ethics, and professor of pediatric medicine, and by courtesy of bioengineering. You can check out his bio here

Ethics plays a huge role in organ donation, and ethics committees/consults can be crucial (and are sometimes required). See also my interview with Dr. Holly Tabor, Associate Professor of Medicine and Associate Director of the Stanford Center for Biomedical Ethics, about the role of ethics committees.

Dr. Magnus is a real superstar and a world-renowned expert on this stuff, so let’s dive right in!

Here are some of the key points in our chat that you can jump to or visit the YouTube link to simply click the segments you want to hear (they’re listed in the YouTube description).

02:30 Intro to Brain Death and Organ Procurement (NOT “Harvesting”)

04:30 How Brain Death Can Be Determined

07:45 New Jersey and Brain Death (Not What You Think)

08:50 Karen Ann Quinlan

09:20 Terry Schiavo (Brain Death vs. Vegetative State)

11:10 A Gray Area in the Gray Matter: Going Through Puberty While “Brain Dead”

13:15 You’re Not Dead Until You’re Warm and Dead

14:45 What About That Neurosurgeon Who Claimed He Was “Brain Dead” and Saw The Afterlife?

15:15 The Case of Jahi McMath

17:00 Can We Misdiagnose Brain Death (She Moved Her Finger! She’s ALIVE!)

18:30 You Don’t Come Back From The Dead

19:00 Philosophy & Brain Death & The Practical Challenges to Defining It

24:00 Controversies Around “Circulatory Death” And When to Call The Code

25:55 You Have to Die In The “Right Way” To Donate Organs

27:30 Solid Organ Rules vs. Tissue Donation

28:20 The “Dead Donor” Rule

30:20 Who Consents to Organ Donation, How Does Procurement Work, and Can Your Family Override Your Wishes?

34:00 Do Rich People Like Steve Jobs Get Organs Faster?

41:00 Should Children of Anti-Vaxxers and Those With Developmental Disabilities Be Allowed to Get Organs?

43:00 Should Undocumented Immigrants Get Organ Donation in the U.S.?

50:00 Towards A More Just Transplant System

51:30 The Heartbreak of Following The Ethical Rules

54:30 Palliative Care

56:15 The Charlie Gard Case

58:30 Advice For Future Bioethicists and Why The Ethical Culture Matters

 

Check out the original video here on Facebook and if you want instead to listen to the free podcast version, you can peep it on iTunes and Soundcloud. Leave your thoughts, comments, and questions and share!

– Z-Pack, I am here at Stanford University, in a trailer, that’s right, a trailer, ’cause that’s what a world-class institution puts a world-class professor of biomedical ethics in. This is David Magnus, he has so many titles, you guys, and is so well known, that I just have to let him tell you his titles, ’cause I will forget them all. 

 

– So, my name’s David Magnus, PhD, I direct the Center for Biomedical Ethics, I’m also the Thomas A. Raffin Professor of Medicine and Biomedical Ethics, and professor of pediatrics medicine, and by courtesy of bioengineering. 

 

– I’m an internet rap guy. Thank you for being with us. 

 

– My pleasure. 

 

– I was so thrilled because I was here in Palo Alto, reconnecting with colleagues, and David and I connected, and David’s been chair of the Ethics Committee at Stanford for untold eons, and I’ve been here, and I call ethics consults, so he’s helped us and our team take care of very difficult conflicts on every different level. So I was thrilled because we just did a piece on organ donation that was really aimed at increasing the number of organ donors and dispelling myths around organ donation, and I knew when I did it that it wasn’t in any means comprehensive, it wasn’t in any means perfect, and it wasn’t in any means a nuanced discussion of the topic, it was a, “Here’s what you need to know “before you decide whether to be a donor.” Now, what I wanna do, for the people who go deep in the game, is a world expert on organ donation, on brain death, and the biomedical ethics around those issues. He has been in the press, he does research on this, I wanna talk to him about the details of organ donation, and the myths, and also some of the latest research around things that’ll blow your mind, in terms of organ donation. Dave, so, you saw the piece that I did, and in it… First of all, I used a word which I shouldn’t have used, I said that the transplant team will come and harvest the organs, apparently that’s not a word they like to use, procure, rescue the organs is better. So, purely from a standpoint of language, it matters, because it has a connotation, it sounds like body snatchers are coming from space to steal your organs, so that’s something I have to say my bad, but, we went into some more depth about equity in organ donation, we wanted to go into more depth on brain death, like, I said, “Well, you have to be brain-dead “before they’re gonna be able to donate your organs.” Well, what does that mean exactly? So, where should we start? Should we talk about… 

 

Intro the Brain Death and Organ Procurement (NOT “Harvesting”) 

– Why don’t we start with brain death, because we should start, maybe, with the procurement process, why don’t we start with procurement– 

 

– I’m sorry, the harvest process, is that what you mean? 

 

– Yeah, that’s exactly what I mean. 

 

– So we can start with the ethics of procurement, and then maybe listing, and then allocation, and sorta just go through in sort of the order, does that make sense? 

 

– That’s perfect, yeah. 

 

– Okay, so, procurement of organs, as you said, that’s another myth in a way, a lotta people think that anytime you register to be an organ donor, that you’ll be able to be an organ donor, it’s important for people to know that most people when they die are actually not gonna be able to donate their organs. You have to die in just the right way in order to be an organ donor, and very, very few people ever actually are able to die in the right way, so only a very small percentage of deaths are people who are eligible to be organ donors. 

 

– You know, I can barely live right, now I’m thinking I may not even die right. 

 

– Yeah, that’s– 

 

– Because I’m an organ donor, and if they don’t get to have this… Actually, it’s my spleen I wanna donate. Most people don’t understand this, they think it’s a vestigial organ that doesn’t do a whole lot, immune function, I wanna be a spleen donor. Anyways, that aside, what do you mean by die in the right way? 

 

– So most cadaveric organs come from patients who have died because they’ve been declared brain-dead, but that’s a very rare sort of thing to occur, so it means that you have to both have the loss of functioning of the cerebral cortex and the entire brainstem, while also being maintained on ventilatory support. So if patients just die in the field, or they just code and they pass away, or something happens to them, they are usually not going to be able to be eligible to be donors. So most organs come from brain-dead donors. There’s another class called donation after circulatory death, which we can talk about in a minute, much fewer organs come that way, and that’s another set of very unusual circumstances, but most organs come from patients who’ve actually been declared brain-dead or death by neurological criteria, that’s where we get most of our organs from, and you have to die just in the right way for that to happen. 

 

How Brain Death Can Be Determined 

 

– And I can tell you, it is rare. If I have patients who have passed, it’s very rarely with full brain death documented. And again, as he said, it’s cortical death and brainstem death, so, there are criteria that neurologists will use. Can we go through some of those? How would you evaluate for brain death? 

 

– Sure, and that’s actually a very interesting thing, so the way that brain death gets evaluated by the neurological services, or sometimes by intensivists, they really primarily focus on a couple of things, first, there has to be a cause of the brain death, so they have to understand and have an account for why there ought to be the loss of those functions, second, there can’t be any masking conditions that can get in the way and make it seem like they’re brain-dead when they’re really not. 

 

– Electrolytes, yeah. 

 

– Electrolytes, sedation medication, they have the body temperature, all of those have to be taken into account and make sure that you meet all of the right criteria in order to be able to be evaluated. Then it’s pretty much a clinical exam that tends to focus on the brainstem itself. So, they drip cold water in the ear 

 

– Calorics, yeah. 

 

– and see if there’s anything that happens. They prick the eyes to see if there’s any pupillary response. 

 

– Corneal reflex, pupil response, yeah. 

 

– So they essentially move down the brainstem with all of these different tests, finally culminating in what’s called the apnea test, where they see if there’s any ability to spontaneously breathe on your own. 

 

– Yeah, and by the way, so the way they do that, in some environments, is they hyperoxygenate so that the oxygen levels are high, then they’ll turn off ventilatory support, it’s a whole protocol, and then they see is there respiration, in the setting of rising CO2, and you need to check the CO2 at the end of that time period to see is it high enough to trigger a respiration. If there’s nothing, the assumption is that the brainstem is nonfunctional. 

 

– Right, so at that point, you’ve gone all the way down, shown that there’s no brainstem functioning, there’s no responsiveness, so the cerebral cortex is not working, and of course, without a functioning brainstem, there wouldn’t be anything there, and that’s pretty much what a standard brain death examination consists of. It raises a challenge because we now know a lot more about brain death than we did when this was first created. The concept of brain death, it had been something that people had been talking about and utilizing a little bit starting in the late 1950s and into the 1960s, and then, in 1968, at Harvard, there was an ad hoc committee created, chaired by Henry Beecher, that published an article in JAMA, in 1968, describing what they called irreversible coma, which was the first standards and a, really, call to say that we should cal patients who meet this neurological state as being dead for the purposes of both withdrawal of life support as well as for the purposes of procuring organs. And then after that, states started sorta slowly to adopt that, state by state, it started to be used by hospitals a little bit in practice, and then in 1981, the President’s Commission on Bioethical Issues came out with a rationale, the first rationale, and said, “This is something that we should do,” and the Uniform Determination of Death Act came out, and it became codified, and at this point, it’s the law, either statutory law or case law, in all 50 states. So in all 50 states, brain death is death. There’s one state where if there’s a religious objection, which is New Jersey, there’s one state where if there’s a religious objection, then you’re not dead by neurological criteria, and you can only die by permanent cessation of circulatory functioning. 

 

New Jersey and Brain Death (Not What You Think) 

 

– Got it, and ’cause “Everything’s legal in New Jersey”, to quote Hamilton. That is fascinating, and partially the reason they came up with this is because of the organ donation issue, right? 

 

– Absolutely, partly the organ donation, and also, it’s very different today than it was in the 1960s, in the 1960s, when ICU support and life support was relatively new, people weren’t sure how to think about withdrawal of life support, was that just a refusal of treatment, or was that actually killing people? And so, in the 1960s, they weren’t really sure how to think about it, and so this became a way of saying, “It’s safe to withdraw life support.” Of course, now, we don’t worry about those sorts of things as much anymore, and we’ve had decades, and we’ve had the Patient Self-Determination Act, but in the 1960s, physicians were very worried, and in fact, there were a few cases where prosecutors actually prosecuted physicians for withdrawing life support on patients, even if it was in accord with family or patient wishes. 

 

– Oh, interesting, even if it was in accord, wow. 

 

Karen Ann Quinlan 

 

– Yeah, the very famous Karen Ann Quinlan case, where it was one of the first cases that went to the Court, Supreme Court of New Jersey, and the Supreme Court of New Jersey said, “Yes, absolutely, this isn’t what she would want,” and therefore ordered her life support to be withdrawn. The hospital actually refuses, this is a part of the story that most people don’t know. The myth is they withdrew the ventilatory support and she didn’t die and lived for another 10 years, that’s actually not what happened, they actually weened her. So they refused to comply with the court order and then were able to successfully ween her over a longer period of time. 

 

Terry Schiavo (Brain Death vs. Vegetative State) 

 

– Oh, and that’s why, maybe, she survived for so long. Well, so walk me through this, Terri Schiavo, brain-dead or vegetative state? 

 

– No, so she was in a vegetative state, so it’s really important for people to understand the difference between those things. Sadly, I even see cases where we have chart notes which describe patients as brain-dead, even though they’re over-breathing the vent, or really using casual language, so it’s really important to understand the difference between a number of different terms. So, coma obviously refers to a patient who’s unconscious. We sometimes induce a comatose state for patients who are severely injured in order for them to be able to recover. 

 

– Good example, my co-producer Logan Stewart, comatose every time you see him on the show. Other thoughts on that? 

 

– Yeah, there we go– 

 

– Yeah, right, he knows, he watches the show. 

 

– I also teach undergraduates, so I’m used to seeing a lot of comatose students later in the quarter. So comatose is being unconscious, being vegetative means you still have brainstem functions, including wake and sleep cycles, but you’ve lost function of the higher brain. 

 

– Correct. 

 

– So that’s what a vegetative state is. There’s a state that’s relatively new called the minimally conscious state, and it is very difficult and challenging to distinguish between a minimally conscious state and a vegetative state, because in a minimally conscious state, you are mostly in a vegetative state, but periodically, so you wax and wain, periodically, you will be in something more than a vegetative state, and that makes it very challenging because at the time that the neurologists come by to do the exam, you may be vegetative at that time, but actually demonstrate signs of consciousness at other times, and so, error rates for vegetative state diagnosis are very, very high. 

 

– I imagine error rates for a lot of these might be high. 

 

– Not for brain death. 

 

– Not for brain death, so we’re pretty good at brain death? 

 

A Gray Area in the Gray Matter: Going Through Puberty While “Brain Dead” 

 

– Brain death is much easier to evaluate than vegetative state, and there’s no evidence really that people do that incorrectly, with one exception that’s really tricky, that I’ll talk about maybe. So as I said earlier, we’ve learned a lot since 1981 and since 1968. In 1968, 1981, when these laws first were getting put on the books, and the Uniform Determination of Death Act was first written, they talk about the death of the entire brain, and the assumption was that when you had met these neurological criteria, the entire brain, every part of the brain, was completely lost. During the 1980s and ’90s, it was gradually discovered that sometimes in patients who meet neurological criteria for brain death, that is their brainstem has completely lost functioning, there’s no evidence of anything going on in the cerebral cortex, there is sometimes some hypothalamic functioning, some pineal gland functioning, some pituitary functioning. 

 

– I mean, ’cause there’s been cases of girls who have been declared brain-dead who have gone through puberty during their brain death period. 

 

– Absolutely, and women who have been able to successfully give birth who were declared brain-dead but were pregnant, they’ve been able to successfully continue their pregnancy and give birth. So in those early days, the assumption was somatic death of the body would follow very quickly after brain death, we now know that that’s not true, and sometimes it’s true, sometimes it’s not. One of the main factors in how long a body lasts has to do with whether or not there’s any of this sort of residual functioning of the sort of hormone regulatory sections of the brain. But so there’s been a lack of fit, since this occurred, there’s been a lack of fit between the Uniform Determination of Death Act, which says the entire brain has to be dead, and what the medical practice is, and well-understood medical practice, of saying that you’re dead when you’ve lost your brainstem plus your cerebral cortex. Now in the UK, they decided that they would solve this problem, they did quite a while ago by just saying death equals the loss of the brainstem. That’s what we really evaluate, and when the brainstem is gone, the person no longer lives. 

 

– Are there any cases, and again, I may be really ignorant asking this question, as a physician, I oughta know this, are there cases of brainstem death in the presence of actual cortical function? 

 

– No. 

 

– No, so higher levels have to be dead if lower levels are dead? 

 

You’re Not Dead Until You Are Warm And Dead 

 

– Correct. At least up until now, I think that would be something that would be well-established. People have questioned whether that’s true with the Jahi McMath case, so there’s a very famous case going on right now. I would say the thing that we’ve known, certainly up to the Jahi McMath case, is that any time that a patient has been diagnosed as brain death, and later made any degree of functioning, it was always because the brain death exam was done incorrectly, the body temperature, somebody drowned and they were at a body temperature that was too low, it was always very obvious that it had been done incorrectly. 

 

– And let me clarify that point, you are not declared dead, brain-dead, until you are warm and dead. 

 

– Correct. 

 

– So one of the prerequisites is the body temperature has to be at a certain threshold before you can declare brain death, because hypothermia can mimic brain death in certain circumstances. 

 

– Exactly, so every case up until recently, we would say very clearly that there’s been no… In fact, I think we can still say there’s no clear cases where somebody was accurately diagnosed as brain death, followed the not-that-hard standards and tests to be able to apply, and has had any degree of recovery, and that’s why it’s so well-established, like I said, they’ve been doing it since 1968, pretty routinely at most hospitals, certainly since 1981 at almost every hospital. So this has become a routine part of care, it’s something that’s very well-established in law, in medicine, it’s as well-established as any other part of medicine. 

 

What About That Neurosurgeon Who Claimed He Was “Brain Dead” And Saw The AfterLife? 

 

– Can I tangentially ask you something before we bring this back to organ donation, because I think, again, setting the base of what is brain death is a key to understanding the donation process. There’s a neurosurgeon, I think, Boston, who had meningitis, survived it, and then comes back to tell stories of the afterlife, wrote a book about it, he claims he was effectively brain-dead during these experiences he had, but looking at the actual physiology of what was going on there, was he really brain-dead that we know of? 

 

– He couldn’t have been actually literally brain-dead, met neurological criteria, it would have been a shockwave throughout the world if that had happened.  

 

The Case of Jahi McMath 

 

The one case that we are dealing with right now that’s controversial is the case of Jahi McMath. No neurologist, or neurosurgeon, or any qualified personnel have ever evaluated her for brain death and done an actual clinical exam of her and found her not to be brain-dead. So she was declared brain-dead with a number of exams– 

 

– Is she an Oakland girl? 

 

– She was the Oakland girl who’s now… Well, now, there’s somatic death of the body, occurred recently in New Jersey, but she was maintained in New Jersey for some time, but nobody ever did a clinical evaluation and found her to be anything other than brain-dead. However, her family made videos of her that seemed evidence to the family that she was responsive to commands. And there is at least one retired neurologist, who’s a respectable neurologist, named Alan Shewmon, who also is a tireless critic of brain death, he doesn’t believe brain death is death, who believes that those videos are evidence that she actually was not brain-dead later, and that she actually was exhibiting significant function. Now I know other people who have looked at some of those same videos and come to different conclusions, and don’t think they showed that, and of course, one of the challenging things is that you’ve got people making videos, and that there’s a short number of videos, and we don’t know how many they were, you don’t know everything that was going on in the backgrounds. I once saw a video of a talking dog, I don’t think it showed that there actually was a dog that talks, so– 

 

– I once saw a brain-dead rapper actually rap, his name is Lil Pump, and he is clinically brain-dead, yet fully rappable, which is amazing. Now, speaking of that, you were talking about videos and talking about how you can misperceive brain death sometimes as well. 

Can We Misdiagnose Brain Death (She Moved Her Finger! She’s Alive!) 

 

– It’s pretty rare. Vegetative states are easy to miss, brain death, it’s much easier to do, the only mistakes are when there’s been masking conditions, and people have missed that, and they just need to make sure that they don’t do that. 

 

– So one other thing I wanna tell nurses, family, people at the bedside when they see a loved one or a patient who has been declared brain-dead, and they say, “But wait, there are some distal reflexes, “there’s some fasciculations of the muscles, “there’s some twitching of the face,” it turns out, according to my understanding of this, you can have these spinal reflexes, they are not brain reflexes, so they are not actually arguing that the brain is functional, they’re saying the spinal cord may be functional, so actually, if you check cranial nerve reflexes, pupillary reflexes, corneal reflexes, gag reflexes, those are gone. These are the function of a dead brain that is disinhibited now in the setting of spinal reflexes. 

 

– Exactly. 

 

– And people get very confused, “He moved, he twitched his finger, he did this.” 

 

– And of course, and that’s really the debate with Jahi McMath, when the family says something and there’s twitching, is that evidence of volition or is that just spinal reflexes? When you watch Shewmon go through those videos, you see the family asking her to move, and you see some movements, and he says, “Those are not real, “those are not volitional, those are just spinal reflexes, “but this other movement of the fingers, those are real,” but then you talk to other physicians who look at the same thing and say– 

 

– They so, “No, that’s all involutional.” 

 

– Yeah, and you can’t really tell. 

 

– It’s like reading tea leaves at that point, it’s very hard. 

 

You Don’t Come Back From The Dead 

 

– Yeah, you have to do an actual clinical exam at the bedside. So to date, there’s not been a single case of a patient who is accurately declared brain death, where they met the criteria, were brain-dead, and somebody’s done a clinical exam and found there’s any change in that status. 

 

– You don’t come back from the dead. 

 

– You don’t come back from the dead. And think about what it really means in terms of what we really care about, and when you think about death, the person, who they were, their memories, their personality, their ability to interact with people, their ability to interact with the world, all of those irreversibly lost. 

 

Philosophy & Brain Death & The Practical Challenges To Defining It 

 

– You’re a philosopher by training. 

 

– Correct. 

 

– How does that inform your understanding of brain death? 

 

– Actually, quite a bit. It’s actually quite a philosophical debate. So I don’t think it should bear on the practical issues, in a way, so I think it really is more philosophical, although a lot of physicians are involved in this debate. For the 50th anniversary of the 1968 Harvard report, we just had a big meeting about brain death and the dead donor rule– 

 

– That sounds like a great party. 

 

-Yeah. 

 

– What’d you put in the punch? 

 

– Yeah, a lot. 

 

– Yeah, a lot, yeah, yeah, yeah. 

 

– But it really is a very interesting thing, everyone recognizes the sort of tension between the UDDA and the fact that there is this little bit of hypothalamic functioning. There are some people who say that we should have a broader definition of death. There’s a very well-known philosopher and ethicist named Bob Veatch who’s argued that if you’ve irreversibly lost higher cognitive functioning, so everything about your memories and everything that made you who you are has been irreversibly lost, then you should be declared dead then. But from a practical point of view, at least my view is that’s the wrong way to think of it, because it’s just not a very practical line to draw. As I already said, we aren’t very good at distinguishing between vegetative states and minimally conscious states, moreover, for it to be permanent, if you have traumatic brain injury, it takes a full year of being in a vegetative state before we can say that it’s permanent. Even in anoxic brain injury, it’s three months, so it’s just not a very useful, practical line to draw. And in a way, that’s really what we’re doing, we kind of wanna think that the lines that we draw in medicine are carving nature at the joints, at these sort of main natural kinds, very few parts of our classification scheme actually do that. Our nosologies, when we say you’ve got the flu, when we divide up the diseases and illness and have our classification scheme, it’s based on practical things, it’s based on the real world, but it’s also a conventional classification. Sometimes we divide up things by signs and symptoms, sometimes we define them by the underlying causes of the disease, there’s actually a history to it, and there’s sometimes debates. The DSM has gone through many revisions and debates about how we define this. The line between life and death is a lot like that, it’s a line that needs to be practically drawn, just like the line at the beginning of life. Where do we decide that you’re a constitutional person entitled to constitutional rights? Where do we decide that the law is gonna draw the line that your loved one gets death benefits? Where are we gonna draw the line that says that he or she can remarry? There’s all these practical things gonna go into death behaviors, and social and legal factors, that are all intertwined in ways, as well as all these medical factors, for figuring out where to draw the right line. The advantage of the brain death line is everything that made somebody who they were, we know is irreversibly lost, and it can be accurately done in a very well-done manner with no false positives, and we know that it’s a really good place that we can actually practically draw the line, and by now, it’s very well-entrenched legally, medically, and socially. Some colleagues and I wrote a piece in The New England Journal called Accepting Brain Death, and why at this point, we said, at this point, it’s really time to really say this is the right way to draw the line. 

 

– This is the right way, and this becomes so important for organ donation, it also becomes important for families to be able to let go. 

 

– Absolutely. Yeah, there’s no decisions to be made at that point. 

 

– Exactly, at that point, if the physicians have made the assessment of brain death, I think that’s a pretty final assessment, you can get a second opinion, if they agree, it’s a pretty final assessment. One thing, and this is a philosophical question, and I really wanna bring you back to organ donation, but I’m also interested because I have you here, the difference between awareness, consciousness, perception, and the personality functions, the thinking, the cognitive functions, all of that, do you think these are separate phenomenon? In other words, can someone even with brain death, theoretically, could there be a persistent awareness that has nothing to do with senses and perception? 

 

– I think the consensus of the neurological community is the answer is no. There’s a certain amount of uncertainty around anything about what happens after you die, but I think the level of uncertainty in this case is no more or less than the uncertainty we have about death event from any other way. 

 

– And the tricky part about awareness, consciousness, is that you cannot determine whether something is conscious without it more or less telling you. It’s a subjective experience, even the Turing test and these kinda things are not… 

 

– Again, in these cases, you’ve got no electrical activity in the brain. 

 

– This is more of a philosophical, less about brain death and more about how do you even determine if something is aware at all? How do I not know the microphone we’re recording with has some consciousness? 

 

Controversies Around “Circulatory Death” And When To Call The Code 

 

– I think where that actually becomes an even more tricky issue is the other definition of death. You might think that the other definition of death, which is cardiovascular death, or circulatory death, is more well-established, it’s actually probably much more controversial. 

 

– Oh, tell me about this, yeah. 

 

– Which is another place where we sometimes get organs, less so, but sometimes. Usually, outside of the context of organ procurement, we don’t really care exactly where the line is. So if you think about it, a patient who’s full code in the ICU, and their heart stops, when do you say their dead? Well, when they are tired of trying the code or they think it isn’t gonna work anymore. 10 minutes later, 20 minutes later, sometimes it depends who the physicians are, it might be 20 minutes, it might be 40 minutes, depends on the team, depends on the patient. Anyway, so there can be a long time, on the other hand, if a patient is a no code, has a DNR order, and they’re not gonna attempt resuscitation, when the heart stops, the patient’s declared dead basically just as soon as you can get a physician into the room to make the declaration, it could be a very short period of time. For adults, there’s no case of spontaneous restarting of the heart after about one or two minutes, and therefore, in a totally arbitrary way, the Institute of Medicine said, “We should say that it’s five minutes after death.” 

 

-We’ll just give it a little padding. 

 

– But they said 2-5 is all defensible. And there’s variation in practice between two and five minutes. 

 

– Right, when to call death, yeah. 

 

– When to call death, and there’ve been a couple of cases where, because pediatric newborn hearts are so rare, there was a Denver protocol where they decided to really push the envelope, and they declared death after 75 seconds for a couple of pediatric cases so that they could, and in fact were successful at procuring hearts that they could then transplant. 

 

– Oh, wow, yeah. 

 

– But again, 75 seconds in a newborn, I don’t know if that might’ve been within the range where spontaneous restarting would’ve been possible, so it’s, again, if you think you have to have irreversible cessation, there’s a big debate about whether is it irreversible, is it permanent, how long do you have to wait? Because if you wait too long, you’ll have too much ischemic damage and you won’t be able to get organs. 

 

You Have To Die In The “Right Way” To Donate Organs 

 

– Get organs. So let me, again, I’m gonna rehash some of this and clarify for people, just because it gets to be a lot, brain death, and declaration of that, is one thing, and it’s one way once you’ve declared brain death, if the person’s on a ventilator and being supported, you can procure organs for donation, the other way, that’s rarer, is circulatory death, so a heart stops, there’s a code, et cetera, and when you declare death after that, we were just talking about that piece, and then how about the organ donation piece of that? 

 

– Yeah, so for the organ donation piece of that, you have to die in, again, just the right way, which is you have to be close to death, on a ventilator, and have made the decision to withdraw life support by the family and the patient, and they’ve agreed that they’re gonna be a donor. In those cases, what they do is they typically send the patient either to an OR, or to right outside the OR, they get the patient prepared for surgery, they withdraw the ventilator, and then they basically wait. If a patient doesn’t expire, their heart doesn’t stop, within a fairly short period of time, then the ischemic damage is too great and they’re not a candidate. So usually they wait certainly no more than an hour, and sometimes even after half an hour. So the heart has to stop very, very quickly. So they have to be good enough shape that their organs are good quality, but in bad enough shape that when you withdraw the ventilator, they will die very, very quickly, and then what they do in those rare cases where that works out, they withdraw the ventilator, their heart stops, they wait five minutes, they declare the patient dead, then they go into the OR and they begin to procure the organs. Usually in that process, you can’t get hearts, you don’t get as many organs, they’re not usually as good quality, so it doesn’t work quite as well because of the ischemic damage. 

 

Solid Organ Rules Versus Tissue Donation 

 

– Now just because it’s hard, that doesn’t mean you shouldn’t be an organ donor, because you need the biggest possible pool to draw from since it’s so hard to get organs. Here’s a question, someone is killed, declared dead at the scene in a motorcycle accident, can they get cornea, tendons, these sort of less-friable organs? 

 

– Potentially, if they can get to them within an hour or two. So, our system actually separates solid organ transplantation from tissue and cornea procurement, so they’re somewhat separated. You have to die in just the right way to be a solid organ donor, it’s actually much easier to be a tissue or cornea donor, and so you can do that even up to usually a couple of hours after death. 

 

– And that’s important too, so, again, there’s some nuance to that even. Okay, so circulatory death, brain death— 

 

The “Dead Donor” Rule 

 

– And the reason why those are so important is because of something that’s called the dead donor rule, which says that we can’t take lifesaving organs from people while they’re still alive. And that’s a very basic touchstone in the ethics of organ transplantation, though there are some people who are questioning whether we should give this up. So it’s challenging, because if you’ve got somebody who says, “I really wanna be an organ donor,” while they were doing well, they wanted to be an organ donor, their family says this was really important to them, now they’re unconscious, permanently unconscious in the ICU, they’re dying, they would wanna donate their organs, but we know that if we remove the ventilator, it’s gonna be hours to days before they pass away, and the family’s gonna do that because they think this isn’t a life that they would find worth living. We can’t take organs from that patient, and the family says, “Why don’t you just, “while they’re on the ventilator, “go in and kill them by taking their organs?” But the dead donor rule says you can’t kill people by the organ procurement process. So the only organs that somebody who is alive can donate are things like kidneys, where you won’t die as a result of donating them. You can’t donate organs that are necessary to sustain life without violating the dead donor rule, and that’s because that’s just a special case of active euthanasia. So in the same way that we can’t actively euthanize patients, in all 50 states, that’s illegal, this would technically, to procure organs and kill somebody by organ procurement, would technically be homicide under the laws in all 50 states. 

 

– So I could donate my spleen now? I could be a living spleen donor? Because, you know, there’s somebody out there that needs my spleen, because for absolutely no reason, just understand that that’s how altruistic I am, is I will give an organ that nobody needs to somebody who doesn’t need it. 

 

– Do you need both of your kidneys? 

 

– Okay, now you’re pushing it, bub. 

 

– You could be a kidney donor. 

 

– That’s true, living kidney donor, partial liver donor, what are other living donor stuff that you can– 

 

– There’s actually only place that does this, but there’s a small bowel live donor program in the Chicago area. 

 

– I have heard about this, yeah, yeah, they don’t want my small bowel, because they’ll get a case of the glutens, I will guarantee you that.  

 

Who Consents To Organ Donation, How Does Procurement Work, and Can Your Family Override Your Wishes? 

 

So, back to the ethics of all this, and away from the glutens, because that’s just unethical to even talk about on this show, now you’re talking about the sorta criteria, it’s hard to be able to… You have to live in the right way, you have to die in the right way, which means we need a big pile of donors, a big pool of donors. Now, what happens if, let’s say in California, I am a registered donor with the DMV, or I’m on an organ registry thing, and I die in the right way, and my family comes up and they’re like, “You’re not taking his organs, we don’t want that”? 

 

– So that’s actually a really big change that’s happened in policy at the OPO in just the last handful of years, and again, this is for brain death, not DCD, because DCD depends on the decision to withdraw life support, for DCD, the families still have control over that, because they could always say, “Well, then you can’t withdraw life support.” 

 

– Yeah, and DCD stands for again? 

 

– Donation after circulatory death. 

 

– Donation after circulatory death so that second case we talked about. 

 

– That second case, right, but for brain-dead cases, once you’re declared brain-dead, if you’ve done what’s called a first person consent by registering to be an organ donor, then the OPO basically has control over that decision, and they’ve made a decision the last few years that they inform the families that they are going to procure the organs, but they don’t ask for permission, and if the family objects, that’s up to the OPO to make that decision, but most OPOs have been moving in the direction of saying that they are going to move forward with the decision of the patients, and do the procurement against the wishes of the family. 

 

– I see, and just to clarify, OPO is Organ Procurement Organization. 

 

– Sorry, yes, the Organ Procurement Organization, yeah. The country, our organ transplant system, under the National Organ Transplant Act, that was set up in the early ’80s, our country is divided up into 256 different Organ Procurement Organization areas that fall within 11 broader organ transplant regions, and so, a lot of the actual work of what’s called the United Network of Organ Sharing is actually done through the particular Organ Procurement Organizations. And they’re not like congressional districts, they don’t divide up the populations at all equally. So here in California, for example, we have a huge Organ Procurement Organization representing Greater Los Angeles, another one representing San Diego, ours is geographically the biggest, represents almost all of Northern California, going all the way down to, I think down to Bakersfield, and it even takes in a little bit of Nevada, it’s called Donor Network West, so that’s our Organ Procurement Organization, and there’s a really tiny, little Organ Procurement Organization representing Sacramento and Davis. 

 

– Got it, and we’ll get back to this, because this becomes important in terms of actually getting on the list and how it might be possible for there to be some inequity. 

 

– Absolutely. 

 

– Yeah, so back to this thing, so the OPOs can then, if you’re registered, you’ve given consent, they can override the family’s objections to organ procurement? 

 

– Correct. 

 

– Right, okay, got it. So then they’re making those decisions, it’s not the transplant team, it’s not the treating physician, so there’s no conflict there? 

 

– No, absolutely, and we try as much as possible to keep, like, the physicians at Stanford, the physicians at the hospitals should play absolutely no role whatsoever in either discussing organ transplantation, dealing with it, it’s really the Organ Procurement Organization that really comes in, talks to the family, deals with the patient or the family, and does the actual procurement process. 

 

Do Rich People Like Steve Jobs Get Organs Faster? 

 

– So when I did my piece on organ donation, I might’ve said something to the effect of richness, wealth, is not what the OPOs look at when they’re deciding on who’s gonna get an organ that’s just become available, tell me the nuance of this with, say, Steve Jobs as an example. 

 

– Yeah, so that makes it complicated, it’s really important to note that there are two parts to this process, first is the process of being listed to be eligible to be getting an organ, and then there’s the allocation process. So if we talk about the allocation process first, if you manage to get onto the list at all, then it’s entirely determined by objective criteria. Now those objective criteria include geography, how many organs are there relative to the population in the area where you are, ’cause organs tend to be distributed geographically, biological match, and then different organs have different criteria that weigh different ethical values in different ways, so, equity, equal access, those are often done on the basis of things like first come, first served or wait times, which used to be how we did kidneys, they often do the principle of rescue, so we give it off into the people who are sickest, so livers, we do it based on MELD scores, so we give it to the people who need it the most, and then also, utility, who benefits the most? So the kidney transfer, for example, we shifted from one that really focused almost entirely on equity, and it was just first come, first served, to recognizing that that was not making really great uses of the resource because young kidney transplant recipients might be receiving an organ from a very old donor, where that organ’s not gonna last that long, nearly as long as the patient will, and they’ll have to have several transplants, and the other end, you might have somebody who’s older getting a kidney from a very young person, and that kidney might last 30 years, but the patient’s only gonna live an average of 10 years. So to make that system yield more utility and get more bang for your buck, as it were, from the organ transplant, they shifted from first come, first served essentially, a wait time criteria, to now they give the top 20% of kidneys to the top 20% of donors who are gonna benefit the most from it, and then the rest are distributed based on age, plus or minus 15 years, to get better matches between donors and recipients, so that you make better use of it. Although there’s a little bit of principle of rescue too, where patients who are highly-sensitized and at risk of not being able to be eligible anymore and falling off the list, they go straight to the top. 

 

– I see, yeah, yeah, yeah. So it’s not as simple as a Tinder swipe left, swipe right? 

 

– Correct, not at all. 

 

– And it’s not as simple as a residency match, it’s a complicated algorithm that takes all those things into account that have evolved over the years and have changed somewhat over the years. 

 

– Changed over some, and they’re different from organ system to organ system. 

 

– Right, so a kidney is different than a lung is different than a heart is different than a heart-lung. 

 

– Absolutely. 

 

– Right, got it, got it, so, that being said, that’s one system, so how do you rank people on the transplant list. 

 

– Right, and as I said, the good news about that is it’s relatively objective, so that’s a really good thing about it, how if it’s based on how sick you are, there are objective numbers to determine how sick you are, but geography is sort of a tricky issue because, as we said before, it’s not like congressional districts, which means that there can be tremendous difference in wait time. So here in the Bay Area, as part of Donor Network West, the average wait time for a cadaver with kidney is about eight years and rising, if you go to UC Davis, just up the road, it’s about 3 1/2 years for a cadaver and a kidney. 

 

– Wow, yeah. 

 

– If you need a liver, you have to be very, very sick, patients who need liver transplants typically get in at least the high 30s and often into the 40s with their MELD scores. In other parts of the country, they would actually take you off the list with those kinds of MELD scores because you’re so sick, it means your outcomes aren’t gonna be as good, and they usually transplant people when they’re getting MELD scores in their 20s, and maybe even low 20s, so there’s a lot of variation. Now what that means is if you’ve got the means, you can be listed in as many Organ Procurement Organizations and in as many centers as you can afford to go to have yourself evaluated, have them as your physicians, have the coverage to pay for it at all these different places, and then be able to fly there within 24 hours. So if you have the means, you can have yourself listed at places, even if you live here in the Bay Area, where we have a terribly-long wait time, California is terribly-long wait times for liver transplant, both in Southern California and in the Bay Area, and Davis doesn’t have a liver transplant program anymore, but if you go to Nashville, Tennessee, they have a much shorter wait time. There are different places of the country where they have much shorter wait times, and you can look around and say, “Look, I really wanna get my care,” so if you’ve got enough resources to be able to get your healthcare anywhere in the country you want, and can fly anywhere you want within 24 hours when you find out that an organ is available, you’re much, much more likely to get an organ. 

 

– And so this is where when I talked about the wealthy being not preferred necessarily for a organ, this is the sort of nuance around that. So, Steve Jobs, although living in the Bay Area, got his organ at Vanderbilt. 

 

– Correct. 

 

– And he might’ve died on the transplant list here. 

 

– He almost certainly would’ve died on the list if he’d been in the Bay Area before getting his transplant. 

 

– And now, presumably, by the way, so he had neuroendocrine pancreatic cancer, and presumably this was because he had liver involvement of the cancer and needed a transplant for that, it wasn’t because he had other liver disease, to my understanding. Here’s an ethical, can you violate HIPAA for someone who’s already deceased? 

 

– HIPAA, yes. 

 

– Dammit. 

 

– So HIPPA applies even after you’ve deceased, though the Common Rule does not. 

 

– Got it, okay, interesting, okay, so, that’s one way the system can be nuanced, what about being listed at a different level of acuity? So what if he’s got a concierge doc who lists him at a higher MELD score? A MELD score is a measure of sickness in liver patients. 

 

– Well, so there is some gaming of the system that sometimes happens where physicians will do things to try and make their patients seem sicker than they are so that they get higher on the list, and then the system responds by changing the criteria to get rid of gaming. I think there’s probably still some gaming going on, but they’ve gotten pretty good at trying to avoid that as much as possible. You don’t get to just say what somebody’s MELD score is, it’s a combination of different aspects of 

 

– Objective criteria. 

 

– objective criteria. Now, again, if you decide you’re not gonna ventilate this patient as well, they might get a little sicker, if you don’t do this, they might get a little sicker, there are trade-offs there obviously, ’cause– 

 

– Feed them a pure vegan diet, they’ll die instantly, so that’ll get them right there. 

 

– Yeah, yeah. 

 

– Yeah, so there’s subtlety to it, but it’s getting better, and again, I think– 

 

– And a real effort to make it as objective as possible, so I think on the whole, this geographical aspect creates some inequality for people who are more wealthy, but on the whole, I think for the allocation process, it’s a objective criteria, they do a relatively good job. It doesn’t mean it’s not value-laden, doesn’t mean there aren’t huge debates that go on about what the right criteria should be and how we oughta change it, but it’s on the whole, they do a pretty good job there. Most of the inequality, actually, in the system comes not from the allocation process, but who even gets on the list. 

 

– Now that’s what we should talk about next, so you do a lotta work in this space, and I think it’s fascinating, we were talking a little bit before the show, tell me about this. 

 

Should Children Of Anti-Vaxxers and Those With Developmental Disabilities Be Allowed To Get Organs? 

 

– So it really is fascinating, the very first cases I got interested in this was because we had a lot of really interesting issues with pediatric transplant cases. We had some kids who were developmentally impaired, and trying to make decisions about whether they should be listed or not, and different teams seemed to make the decisions differently, so I started to do surveys of transplant programs about how they make those decisions. We had a really tough case with a kid whose parents refused to vaccinate them, and knowing that about half of kids, for medical reasons, get incomplete vaccination, but when we take that into account, if they were not being vaccinated not for medical reasons, but because of parental refusal. 

 

– Wow. 

 

– And so we wound up doing a survey of that and looking at it, and what we kept finding is it’s all over the map, and that’s a real justice issue, because it means a patient in one place will get listed for a transplant, and at another place, they won’t. 

 

– They won’t, and the same patient. 

 

– The same patient, same condition. And we also worried about whether also some of the decisions were made based on bias. With the developmentally-delayed kids, for example, the emerging data suggests that actually those kids do pretty well on transplant. In some ways, they do better than other patients because– 

 

– They’re a little more externally managed? 

 

– Externally managed, and kids have this tendency to turn into teenagers, and teenagers tend not to be compliant, whereas if they’re more dependent, they actually sometimes do a little bit better. So some it may just be bias. So we were really shocked, we had this one center that we published that we internally in-house called the Americans with the Disability Violation case, to see what people would say, and we found that 25% of solid organ transplant, given a case with no other comorbidities, but the patient had Fragile X in addition to the disease that was causing their organ failure, and it varied from that when we did heart, liver, and kidneys, and 25% of solid organ transplants said that they would not list a kid because they were reading at a second-grade level. So they were functioning independently, they were in a school, they were in a group home, and they said– 

 

– And they wouldn’t list them? 

 

– And they wouldn’t list them. 

 

– Wow. So that’s a really interesting ethical question. 

 

Should Undocumented Immigrants Get Organ Donation In The US? 

 

– It’s a big challenge, and so we’ve been doing, we haven’t published this yet, but we’re working up for publication some survey findings, we just did a very large survey of both adult and pediatric transplant programs. We surveyed 650 programs, we got over 350 responses, so we’ve been collating the data and putting this into these different papers, but the one that we’re about to submit that I think is really interesting, we were looking at some different other kinds of social and behavioral aspects of decision-making, and we looked at undocumented immigrant status, and that was fascinating because it worked out in great timing that a study was just done looking at outcomes of undocumented immigrants who actually get transplants, and undocumented immigrants who receive transplants actually do slightly better than average, and these are Medicaid patients, so these are poor, undocumented immigrants who are on Medicaid, and yet they do better than average on transplantation. So given that the outcomes are good, what reason would there be not to list them? So we looked at the actual data about what decisions are, and we were shocked to find out in only about 15% of transplant programs around the country considered it irrelevant to transplant listing decisions, and the rest was about evenly split between programs that would consider it a relative contraindication, and almost 50% of programs, it would be an absolute contraindication to transplant, that they would not list a patient who is an undocumented immigrant. 

 

 

– Half the programs in the country won’t list you, 15% of them don’t care, and then that other proportion is kinda like, “Well, it’s a relative contraindication.” So, it’s such variability. 

 

– Such variability. 

 

– Do you think it’s politically motivated, do you think it’s just a different committee thing? 

 

– I think there’s bias, and unlike the allocation process, the more we have this done on a non-evidence base, and you just have a group of people sitting around a room saying, “Should we list this patient?” the more likely we are to have different kinds of biases. And I’ve talked to people, so here in the Bay Area, this was in California, we actually cover that with state funding, so it’s not because there’s not funding available to pay for this. At Stanford, it’s irrelevant for listing, for a kidney, for a liver, for heart, we go up the road to UCSF and CPMC and it’s an absolute contraindication for some of those organs. And I talked to some of the folks at those places, they say, “Well, they won’t be able to afford this, “what if they get–“ 

 

– The rejection drugs. 

 

– The rejection drugs, even though that it’s covered. “What if they get deported?” So they have stories to tell about why they think the outcomes would be worse, but the data doesn’t bear that out, and that’s why I think that really is a really real problem. If you’re gonna discriminate against people based on social characteristics, the only way that you can justify doing that is if it’s well-established and the data supports that it actually makes a difference in outcomes. 

 

– Okay, so let me ask you then, so then let’s do that, let’s go through that mental exercise and see what data there is. So people will say, “Undocumented patients have not paid into the system here, “yet they are coming and potentially displacing a US citizen “who has paid into the system,” whatever that system is, whether it’s Medicaid, whether it’s private insurance, whether it’s Medicare, and they’re taking their organs. “So instead of taking my jobs, they took my organs.” 

 

– Except the problem is that just turns out not to be true, because these undocumented immigrants are also eligible to be donors, they actually donate at much higher rates than they receive organs. 

 

– Whoa, whoa, whoa, whoa, whoa, what? 

 

– So they donate organs at higher rates, about tenfold, so they donate about 10 times as many organs as they receive on average. They also pay more into Medicaid taxes than they receive back in Medicaid benefits. 

 

– But how are they paying Medicaid taxes, they’re working and they’re paying– 

 

– They’re working and they’re paying taxes. 

 

– And they donate 10 times more organs than they receive? 

 

– Absolutely. 

 

– We oughta just let everybody in just to take their organs. 

 

– Well– 

 

– Did I do that ethics right? 

 

– I think there are certainly limits to that, there’s certainly some transplant tours when that happens, where wealthy people from other countries come in to get transplants. 

 

– Oh, is that right? Yeah, yeah. 

 

– And they often pay at a much higher premium, and so there are some transplant programs that like having… There’s programs that were known to specialize in Saudi transplantation. 

 

– Exactly, you have a whole wing, the Alibihad Syad Wing. 

 

– There actually are programs that are like that. But on the whole, for undocumented immigrants who are living here, they’re residing in this country, they’re paying taxes, they’re living here like everybody else, they donate, there was some interesting qualitative work that some researchers did talking to people about transplantation who were undocumented, who said, “Oh, they’ll take our organs, “they just won’t give them to our loved ones.” 

 

– Wow, so it’s always more nuanced than the news is gonna tell you. So if the news is gonna report this, it’s gonna be very black or white, one way or the other, where if it’s Fox News, they’ll say this, if it’s MSNBC, they’ll say this, but then when you actually look at the data, the calculus is more nuanced always, and this is something we see on this show all the time, that’s why it’s great to have a bioethicist who does this for a living, who’s philosophically-trained, because the world is this shade of gray, and you have to be able to process that, and that’s why we don’t often take these very black or white stances here, we kinda go, “Well, what are the ins and outs of this?” And we may have strong opinions, I’m sure there are a lot of fans of this show who are gonna be like, “No, it’s not okay,” and then there’ll be a lotta fans who’ll be like, “It’s the just and equitable thing to do, “especially in the light of the data,” and there’s some who will be somewhere in the middle, but you gotta go through this exercise. 

 

– Well, and you can see that play out with different states’ legal systems. So, California and Illinois use state funds to provide transplant benefits to undocumented immigrants, many other states won’t provide those funds, and federal law prohibits the use of federal Medicaid dollars on undocumented immigrants, and so most states, except Illinois and California, don’t allow those dollars to flow, although they will pay for at least some dialysis at some states, others only provide emergency dialysis. 

 

– Exactly, and there was just a work of a Colorado doc on that, looking at physician burnout in the face of the fact that undocumented immigrants have to get emergency dialysis in Colorado, say, but they cannot get it on a elective basis, and so they get so sick, they’ll sit out in the parking lot and eat a banana or high-potassium food so that they can trigger a level that will get them dialyzed, and it’s difficult for the physicians caring for them. 

 

– Absolutely, and it’s a crazy system. California and Illinois I think are on the right track, given that these people tend to get jobs, pay taxes, pay into Medicaid, giving them back the Medicaid benefits that they deserve, they’re part of our medical community, they’re covered under EMTALA, having a system where we sort of cover them and sort of don’t makes absolutely no sense. 

 

– Got it, got it, okay, so that’s good. So now we’ve talked about brain death, we’ve talked about organ donation, both in brain death and donation after circulatory death, we’ve talked about the ins and outs of the wealth inequality component, we’ve talked about the social inequality and the work you’re doing on that in terms of organ donation, other aspects of organ stuff that you think are important to talk about? 

 

Towards A More Just Transplant System 

 

– Well, the inequalities around listing are really tricky, I wanna put a plug in, a colleague of mine developed something called SIPAT, the Stanford Integrated Psychosocial Assessment Tool, so I think trying to make the listing process as objective as the allocation process is, I think, a really important step towards trying to have a just transplant system, and it’s not perfect, but there’s an attempt to try and find what evidence is out there, get more evidence, and to compare it against outcomes, and to tweak it on a constant basis, it’s pretty good. It can be heartbreaking, but if SIPAT says, “This patient’s social situation,” which is correlated, there is a justice issue even here, right? Because if you’re poor, you don’t have a car, you live in the Central Valley, it’s hard for you to make doctors appointments, you’re much more likely to have organ failure, and you’re– 

 

– So you’re gonna get there, yeah. 

 

– And we know there are things that are highly correlated with socioeconomic status that have to do with whether you’re gonna be a better or worse transplant candidate. And that’s hard to avoid, we can try and do what we can to mitigate those things, but it’s there. But if you’ve got actually objective criteria that say, “Right now, this patient is not a good candidate “for all of these reasons,” and then we’ll do our best to ameliorate them, but if we can’t, it’s heartbreaking.  

 

The Heartbreak Of Following The Ethical Rules 

 

I had a case once with a patient who was, like, a poor immigrant family, he was a US citizen, but he was the first person in his family who was likely to be able to go to college, he was almost 18 years old, he had been born with cardiomyopathy, but he had done really well, he was doing well in school, he had a girlfriend, he was looking forward to going to college, and then, December of senior year, heart failure, just terrible, terrible outcome, and he did an active suicide attempt sort of acting out because of everything that was happening, but an active suicide attempt is a very powerful contraindication to transplant. 

 

– Oh, a contraindication to transplant, yeah. 

 

– And then his family also had some really major social issues in terms of social support for him that made him also not a great candidate, and having to tell them as he begged for life and said, “Please, I didn’t know the consequences “of my suicide attempt,” and he’s begging, “Please, list me for transplant,” it’s very hard to sit there and say, “The data says you’re really not a great candidate “and you’re much more likely digraph later,” but sadly, we do not have anywhere near enough hearts to go around, and if he gets a heart, somebody else doesn’t, and so you have to have cutoffs. At least in his case, you can live with it, because you know you did something objectively correct. If you do it just based on your heartstrings, if you do it just based on your gut of who you think is gonna do well and who isn’t, it’s just an invitation for prejudice and bias in the transplant system. So I applaud my colleagues for developing SIPAT and for really trying to develop a process and a system to try and make this as objective as possible. 

 

– This idea of being objective in the face of very emotional decisions, and we talk a lot on the show about this distinction John Haidt, the psychologist, makes about elephant and writer, this idea that elephant is our sort of emotional, intuitive brain, and Kahneman makes this distinction as well, slow-Thinking, fast-thinking parts of the brain, and then our writer, which does the math and the calculations, and how the writer’s quickly overwhelmed and just trusts the gut. In this case, trusting the gut can lead to an outcome that is objectively and emotionally bad, but it will feel bad when you do it. 

 

– Right. 

 

– Like that gentleman you just talked about, yeah. 

 

– Oh, it was terrible, I had some fellow in the clinical ethics service who was shadowing me, and who loved clinical ethics, she loved sitting on every case, that was the first time I ever saw her say, “I do not wanna go into that room “and tell him that the answer is no,” and she just did not wanna go in with me to see him. 

 

– Who had to tell him then? 

 

– It was a combination of the cardiologist from the listing service team and me, the two of us went in and had the conversation with him. 

 

– Wow. So, as a bioethicist then, as a medical bioethicist, do you ever have occasions where you go home and you have trouble sleeping or you have you have issues where you’re– 

 

– Yeah, well, trained in philosophy, I like to think of myself as a brain in a vat, just a logic machine, but of course, I think all of us have cases that are hard to process. I usually try and use my time driving home, I have a little bit of a commute, and so I usually get my crying out of the way when I’m driving home, and then I don’t have to deal with it anymore when I get home. 

 

– I do it in the shower, that way the wife can’t tell you’ve done it ’cause you’re already all wet. 

 

– That’s clever. 

 

– Yeah, yeah, yeah. 

 

Palliative Care 

 

– Yeah, I mean, we all have those things that are hard, but it’s like everything else, I’m amazed the palliative care docs, what they do, I work very closely with our palliative care service, and what they do, and I think in a way it’d be even harder if your goal is… In a way, our goal is to try and make sure we’re making good decisions and that we’re being as ethical as possible, sometimes that’s empowering patients, and sometimes it leads to a lot of terrible things, and death, but at least we know what our sort of goal is and we try to achieve that in every case if we can, and I think palliative care, where they’re trying to aim at a better death, they feel like they’re doing something good, I think it would be hardest for the oncologists or the intensivists because their goal is to get the patient better, and so every time a patient dies there, they see it as a failure, and I think that’s really hard for them. 

 

– Yeah, yeah. The nice thing is, in palliative care, that’s why I’ve become such a fan in recent years, being through this career in hospital medicine, you can actually almost always accomplish your goal if it’s to reduce suffering, you can almost always accomplish it, because we have those tools, and that’s why I think, for me, it feels morally correct, ethics aside, it resonates with me, and so I always say if I was gonna go back into full-time clinical practice, it would be palliative care. So, I mean, we’ve hit almost an hour talking about organs, that’s amazing. I hope you guys are still with us, this is a podcast too, so don’t forget, if you wanna share it, you can listen to it on iTunes and do it on your commute while you’re crying, ’cause it’s a good way to spend your time because this discussion has been amazing. 

 

The Charlie Gard Case 

 

I wanna leave, well, I’m gonna leave asking you anything you wanna discuss, but I have a quick question because this came up quite a bit, the Charlie Gard case in Great Britain, we did a few shows on that, and there’s a lot of sort of charged emotion around it, what’s your sort of quick take on that scenario? 

 

– Yeah, sure, so, here in California, we’re one of the few states that actually has a futility law on the books, but the futility law we have on the books, which corresponds to the AMA Council on Ethical and Judicial Affairs standards for how you should handle these cases, and the American Thoracic Society standards for how to handle it, which is you have to give them a time-limit opportunity to find another institution, and if they can find another institution, then you should facilitate a transfer, and you can only withdraw against the wishes of the patient’s surrogates or family, especially in a pediatric case, if it’s medically ineffective and there’s nobody else who’s willing to take the patient. In the Charlie Gard case, and the other case that came up, there actually was another institution willing to take the patient, and so if that had happened in the US, there is no question in my mind, 

 

– They would’ve transferred. 

 

– they would’ve transferred the patient. If somebody else is willing to take it, no matter what we think about it, and it really shows the real differences between the UK and the US when it comes to especially pediatric cases. In the UK, they really take the best intra-standard very literally, and if you think it’s a best intra-standards, why should the parents’ judgment really play that big a role? Whereas in the US, we’re much more parentalist, and the standard really, in practice is, we may talk about a best interest standard, but in practice, unless it crosses a threshold of abuse or neglect on the one hand or ineffectiveness on the other, we give parents huge latitude to make those kinds of decisions. 

 

– Yeah, I think that’s why Americans got so upset at that case, whereas it was much more nuanced in Great Britain, and having done shows on it now, and my own thinking is still kind of somewhere in the gray on that. 

 

– I think if another physician says, “I’m willing to do something,” in the US– 

 

– They’ll just go. 

 

– Hard to see why you would say, “I’m gonna not let you go to that physician.” If there’s somebody who wants to do a research trial that they want him to be enrolled in, why should you not allow him to do that? 

 

– Yeah, and again, I think the best interest idea there, they said, “Well, no, it would trigger seizures, “the transport, it would do this and that “that might lead to something–“ 

 

– It might, but usually in the US, we say, “Look, those are all things that you tell the parents,” there’s no evidence that they were abusive or neglectful towards their patient, they would take all those things into account in making their judgment, after talking to both those other physicians as well as the physicians who think it’s a bad idea and make their decision, that is absolutely how it would be done in almost every hospital in the US. 

 

Advice For Future Bioethicists and Why The Ethical Culture Matters 

 

– What advice are you gonna give to budding bioethicists, or clinicians, nurses, administrators, people in leadership about how to think about ethics in their practice or as a career? 

 

– It’s interesting, those are two very different things, institutionally, how we oughta be thinking about that, from an administrative standpoint, and all those things, I think it’s important to really see what services you have available, but also really think about the ethical climate of your institution. There’s some really great work that the people at the VA have done where they’ve shown survey research showing vastly higher rates of burnout, higher error rates, higher malpractice rates, in a climate that’s ethically not as good, so when nursing staff feels empowered to raise ethical concerns, when staff feels powered to do that, you get much better outcomes, so do those surveys, and do an evaluation of the ethical climate of your institution, and make sure you’ve got a good climate of your institution. 

 

– I couldn’t agree more with that, I think that’s so important, it flavors the culture of everything. And I could tell you, just even working this hospital, at Stanford, and then across the Bay at a different hospital, community hospitals, the ethical climate is very different, especially in terms of incentives to do things to people instead of for people, and those sort of broader sort of concerns that really do impact your feeling of, “Is this my calling that I’m practicing, “or am I doing a job to make money?” David Magnus, this has been legit, for real, like, I try to make jokes during this thing, and you can’t, because it is actually a super-important topic that should impact all of us. 

 

– I actually do have a sense of humor, but I have a hard time doing it when I’m talking about such serious things. 

 

Should The Opt-In Organ Donation Election Be An Opt-Out Process Instead? 

 

– And that’s appropriate because what you do is so important to actually all of us on the front lines who are practicing medicine, and I want you guys to still understand that donating, becoming an organ donor, listing yourself… Oh, one last thing, this opt-in versus opt-out idea, so right now, it’s an opt-in to be an organ donor, you gotta click a box, and I said in my video, I’m like, “I think that would help a lot “if we could make it an opt-out “so you have to actively go out of your way “to opt out as an organ donor,” what are your thoughts on that? Would it really help at all? 

 

– It might help a little bit, not a lot, because for brain-dead patients, which is the only ones that that would apply to, we actually convert about 70% of the eligible donors now, so we do pretty well around the country at getting them, we just don’t have enough people who die in just the right way to be able to get their organs, but on the other hand, if we can go from 70 to 80%, it won’t stop the shortage, it won’t solve the problem, but every organ we get, there’s some real patient there who needs that organ, who’s gonna die without it, and so every single organ we get makes a big difference. 

 

– That’s exactly spot-on, I think that’s exactly right, and so I think what I’m getting from that, David, is we don’t need more opting in, although we do, we need more death, we need more death in the right way, or else, you know, someone else can’t live. 

 

 

– Well, what we really, probably, in the long run need are other alternatives. 

 

– Yeah, yeah, you said it, grown and… 

 

– Grown. 

 

– Next time we have you on, can we talk about stem cells? 

 

– Absolutely. 

 

– That’s another specialty of yours. I would love to do that. Guys, I want you to list out the questions, the next time I talk to David, if he agreesafter this, if I haven’t destroyed his career, to talk to him about ethics issues, it would be a huge resource to have him, and it turns out you’re a fan of the show. 

 

– Huge fan. 

 

– Dude, so, what’s your favorite Vader episode, ’cause I think you gotta be a Vader fan. 

 

– Well, the Doc Vader Versus The Health Administrator is definitely way, way up there. 

 

– Have you been in that position where you’re like, “I didn’t mean to say that in mixed company,” and you’re sitting there in HR, you’ve never been in front of HR, have you? 

 

– I have not. 

 

– Okay, well, there you go, that’s the ethically-correct thing to do. 

 

– But I think that’s just really brilliant, the other one I really loved was when Doc Vader comes in and the new immigration ban was put in place. I thought that was brilliant. 

 

– He was like, “They’re building the wall on the wrong border, “it’s the Canadians.” 

 

– “It’s musical terrorism,” I love that. 

 

– You are a fan. 

 

– I love the part where you say, “I get it, it’s because I’m black.” That was awesome. 

 

– You know what, so here’s the thing, when I do things like that, everybody’s like, “Oh my gosh, what did he do?” I’m like, “No, that’s exactly…” 

 

– I thought it was brilliant. 

 

– That’s the issue, is he’s being stereotyped, he’s got a black helmet and a black suit. 

 

– Well, I am a huge, huge fan, honestly. 

 

– I’m glad, I’m glad. Can I show these guys your office real quick, is that too much? 

 

– Oh, I don’t know if you wanna do that. 

 

– Too embarrassed? 

 

– A little bit, maybe. It wouldn’t bother me as much, but my wife might have a fit. 

 

– Okay, then I’ll just describe it, this is a beautiful scene right here, it’s very academic, if I turned it around, papers stacked up this high, tchotchkes, like this guy. 

 

– Brandon Crawford. 

 

– Hey, who’s a Giants fan out there? Look at this. 

 

– Yeah, I’m always torn when you fill out surveys when they say religion about whether to say Jewish or baseball fan. David Magnus, I’ll go with Zoroastrian, ’cause that’s me, and I don’t understand sports because they frighten me and I’m not good at them. Do you play anything? 

 

– No. 

 

– Yeah, that’s perfect. How do you like living in the Bay? 

 

– I love it here. 

 

– Should I move back? 

 

– Yes, definitely, we need you. 

 

– You need me? 

 

– We need you. 

 

– I need you guys. 

 

– We definitely need you. 

 

– ‘Cause it’s a different environment in Las Vegas, it’s not a big academic environment, but it’s interesting ’cause a lotta people come through, but in this place, it’s like I can walk anywhere and run into a world expert on something cool. 

 

– That’s actually one of the most exciting things about Stanford for me, is I just love being able to talk to different colleagues who are incredibly well-known in all their fields, it’s just really fun and a pleasure, and you realize, like, “Oh, hey, I’m having this talk “with a colleague about some things, “and it’s Abraham Verghese,” who’s a very well-known person, who’s gonna be on your show. 

 

– He’s gonna be on my show! 

 

– And Abraham’s awesome. 

 

– I can’t wait, ’cause he’s all about the touch and intuition, he reminds me a little bit of my dad, and again, immigrant, physician, and so on, so I’m excited about that. And I spoke to your colleague Holly Tabor. 

 

– Holly, oh, at my center, we’ve got great people, Holly’s awesome. 

 

– She is fantastic, and really passionate about this issue of how do we deal in the medical community with those with disabilities, from an ethical standpoint, and a practical standpoint as well, so it’s tremendous. So thank you again, my brother. 

 

– My pleasure. 

 

– I really appreciate it. Guys, hit us up with questions, do me a favor, hit share, if you have thoughts, concerns, hit us up, and, again, we’re with David Magnus, super-duper professor of everything biomedical ethics at Stanford, and we’ll put all his info in the blog post and in the description, and we out, peace.