 The final speaker of this session and of the conference will be Dr. James Kirkpatrick. Jim is an assistant professor of medicine, medical ethics and health policy at the University of Pennsylvania. There, Dr. Kirkpatrick directs ethics and professionalism education for the Penn and Cardiovascular Medicine Fellowship Training Program. He performs ethics consults, coordinates ethics educational outreach initiatives, and serves on the leadership team of the Ethics Committee of the Hospital of the University of Pennsylvania. Today, Dr. Kirkpatrick will talk to us on the topic, death is just not what it used to be. Jim. Thanks so much, Mark, and I know you've all been dying to hear this presentation, that's why you're still here. I want to thank Mark and the McLean's, especially for this opportunity, and I thank all of you for staying really to the bitter end. I hope this is not the bitter end because of the quality of this presentation, but because this has been yet another fabulous conference. I really want to thank just the organizers and table women and Christian for the great work in really putting this all together. This has been a phenomenal conference. Christian, we're really the glue behind the conference. I just can't agree with you more. They really did a great job. Hopefully, at the end of this, I'll basically give you some roast topic to think about on the way home, but I'm also going to review a lot of things that have already been said, and I think this point has already been made already here, that it said that there are only two things in life that are certain, death and taxes, but maybe only taxes at this point. Especially in Illinois, it's a good point, Mark. The question is, how do we define death? How do we think about death? What shifts us from being alive to being dead? Is it a lack of sentience? Is it a lack of personhood? Is it a cessation of all spontaneous biological activity? Is it a departure of the soul to bring in some of the religious and spiritual questions that we've grappled with? And that's really different than this idea of how we diagnose death, right? Because diagnosing death involves things like saying that there is a cessation of cardiopulmonary activity, such as a lack of pulse or a lack of spontaneous respiratory motion, or how about brainstem reflexes? That's one thing that we look at a lot. How do we determine that even? Is it by physical exams? Is it by apnea testing? There's a whole host of other things that we use to diagnose death as well, imaging things to look at cerebral blood flow and other markers we can measure as blood tests. Maybe it's this lack of consciousness. Maybe some of the people who actually have a pulse and spontaneous respiration and have some of the physical exam findings consistent with life, but they lack consciousness so they're actually really dead. And we have really grappled with this over a long period of time. I want to add another sort of component to this, and when is death and does it depend? Many of you are familiar with the fact that traditionally there's been this idea that after 20 minutes of CPR, if it's ineffective, you can essentially stop and say that the person is dead. We recently wrote a paper that examined this. I'm not going to go into a lot of details, but one of the things we bring up is does it depend if this is a younger person without a medical history, or maybe it's a stage 4 cancer patient with a DNR order, or maybe it's a patient with after a massive interest cerebral hemorrhage or an Alzheimer's patient. Does our criteria for diagnosing death change when it's the changing patient? So I'm going to give you a very brief history of death. Some of you may recognize this up here. This is a charnel house, and essentially that idea there was that if somebody wasn't responsive anymore, that you would put them in a charnel house and wait for putrefaction to occur or decomposition. And that was the sign of death. That's a pretty good determination of death at that point. Obviously with concerns about an understanding of how infection spread after death, there was a need to bury people a little bit faster, so charnel houses kind of went out of fashion, but we still have this idea of the wake. Wait around, make sure the person's not going to actually auto-resuscitate. In each of Greece, apocrates recommended that at the point of death, as death's coming near, the physician should actually withdraw himself, allow the family to actually determine when death occurred. And that created some problems. Oftentimes they would use a cardiopulmonary criteria here, but that came into fashion a bit more because there was a recognition that if someone is not responsive, it could be to psychiatric illness or toxins. They might have had a drowning effect in cold water and typothermia, metabolic arrangements, traumatic brain injury, all these things can look like death, but they're not really death. And then of course, you recognize this person. This is Edgar Allen Poe, who wrote Buried Alive, a very influential short story, but it was actually reflective of one of the hysterias in the late 1800s. People were very much afraid of being buried alive. They would find claw marks on the inside of coffins when they dug them up, and so it was very concerning. People put in escape mechanisms so that if they were buried alive, they could get out. Poison pellets in some cases were put into there with poison gas that escaped. Some people actually wrote into their advanced directives or wills at the time that they should be decapitated prior to being buried, just to make sure. So out of this, one of the first sort of official recommendations for diagnosing death came from the Society for Prevention of Burial Before Death. You can see all these different things that they used. This blistering to hot iron would be a pretty bad one to undergo if you weren't in fact dead, but a lot of them again rely on these very definitive markers of being dead. So then we had really the rise of brain death. So we sort of went from something you could call brain death, not being very responsive to cardiopulmonary death, because the non-responsiveness didn't work so well, but then we realized there were some problems because we developed CPR. Really the first CPR dates back even to the 1600s, so obviously it didn't get well used until the 1960s. In the 1920s and up to the 1950s, we had the rise of defibrillators and ventilators. Molore and Golan actually came up with this idea of comode passe, this idea that you could basically look like you're alive from cardiopulmonary criteria, but you were brain dead essentially, and then with transplant coming in 1965, and then the Harvard criteria, which has been mentioned in 1968, really coming up with this idea of brain death, which then obviously accelerated and justified transplant. So in 1981 in JAMA, it was published this Universal Declaration of Death Act, and essentially used these two very important words, irreversible cessation of either heart and lung activity or of the entire brain, and we'll come back to why that's important. More recently in 2008, the President's Council on Bioethics actually considered this whole idea of brain death, and they changed the, after considering a lot of different critiques of what had come out in the literature, they actually sort of redefined this idea of irreversible cessation of brain activity and said that instead we should think about this in terms of commerce with the environment. So receptivity, if you're able to respond to the environment, if you have a drive or ability to act on the environment, and in this document they also basically reaffirmed the idea as been mentioned earlier, that the dead donor rule we cannot transplant or cannot harvest organs from anyone who's still alive, they must be dead. They reaffirmed that. Our problems, and we've seen some of this, I think all of you are probably familiar with therapeutic hypothermia, hopefully you understand this sort of came out of some of the recognition that when people were submerged in cold water, they actually survived surprisingly. So now we are routinely cooling people after cardiac arrest. This is just sort of what it looks like here for 24 hours. And basically it's a long period during cooling and then rewarming that actually occurs. And this has shown some good outcomes in cardiac arrest patients. Now we did a study of looking at this earlier, and we found that when we went back to the charts, we found that rather negative prognostic remarks were made in the charts of therapeutic hypothermary patients. And interestingly, many of them were made during the time the patient was under therapeutic hypothermia or right afterwards. And these are the ones in which all the patients lived and these are the ones in which patients were died, all of them died. And the thing that began to worry us a little bit is that perhaps these negative prognostic indications were causing care to be withdrawn and that perhaps there was a self-fulfilling prophecy that was occurring. And you can see all of the cases in which care was withdrawn. And again, some of it during the hypothermia protocol. Now the neurologist would tell you that you really need to wait 72 hours before you declare somebody brain dead. But now there's increasing recognition that you really have to start the clock over after the rewarming has occurred. Again, as been mentioned earlier, there are now machines that can be plugged into patients and to basically keep their cardiac and respiratory drive going through a mechanical standpoint. And this has been used particularly in Asia now. They really are putting people on these peripheral bypass, essentially ECMO without the breathing component, in the ER after cardiac arrest and are keeping them alive. This is becoming a resuscitation technique. And so when we think about this, I think a lot of us would do just like this couple who is having a very good advanced reactive discussion, just so that you know I never want to live in a vegetative state dependent on some machine that ever happens, just unplug me, okay, okay. And you know, we don't want to be too hasty about these things necessarily. And the reason I bring this up is that all of these patients have what's called a ventricular assist device. And they're all dependent on the machine to some extent. Now it is true that at least one half of their heart is working. The other heart is being assisted by the machine. But now we are planning quite a few total artificial hearts. And those people have irreversible cessation of their native heart function. In fact, they don't have a native heart anymore. So are we going to use that definition anymore? It becomes problematic. So perhaps we have to get rid of this idea of irreversible cessation of cardiopulmonary function rely on brain death. Well, as has been mentioned, there's problems with that as well. A lot of the original brain death justification basically was saying, well, this is the type of physical exam findings and other lab values they have right now. And then they died. So they are dead because they will die, essentially. And this, of course, raises problems with a number of pregnant women who have been maintained until fetal viability. This idea of irreversible loss of integrative function, the brain is supposed to integrate all the functions of the body. If that ceases, then the person is brain dead. But we know, as has been mentioned, that pituitary integration continues for quite some time even after a person has met brain death criteria. This idea of disintegration of personhood has been a sign for defining brain death. But what is that leave patients in persistent vegetative state or anencephalic infants? Are they, in fact, dead but they don't look like it? And then there are a number of brain resuscitation techniques that are in the infancy at this point. Deep brain stimulation has been helpful to some patients or has been purported to be helpful in some cases to patients with persistent vegetative state and controlled brain reperfusion, part of the damage that happens after cardiac arrest is when the reperfusion state happens in patients in their brains. And so if you actually control that and put in the right kind of fluid in there, it can actually limit the oxidative, as they say, damage that happens to the brain after you get the heart started again. All of this is looking very promising but of course leads to some problems with using brain death as a criteria. And so this idea of uniform declaration of death act, the universal sensation of heart, lungs, and entire brain, they also mention this very interesting point that a determination of death has to be in accordance with acceptable standards. So it leads to the conclusion that perhaps like politics death is actually locally defined and there is some evidence to suggest this. This was actually a study and it's from a while back in 2008 but essentially there were these American Academy technology guidelines for determining death, brain death. And they went around and actually looked at a number of different hospitals and looked at their protocols for determining brain death and saw to what extent they agreed with the official definition. You can see that the agreement was all the way across the board. So you could certainly be dead in one hospital and not in another. This raises the question then are we really talking about death or are we instead talking about futility? Again, you're dead because you will die in a sense and perhaps we need to think about well you're as good as dead or you're dead enough or you're mostly dead. And at this point I'd like to bring up an article that I think Dan missed in his last thing in discussing all of this. This is a very important article from 1975 New England Journal of Medicine and if you haven't read it you really need to. In it Mark argues that although it's very common for physicians to hang crepe, in other words give a very negative or bleak prognosis to the family in the hopes that if I'm right, if the patient dies then the family will say I'm right, I look good, I was correct. If however the patient survives then clearly I did something good. I'm a miracle worker and everyone's happy with me. He said that there's some problems with this. Not only is there some questioning that comes into the physician's integrity but there's also issues of putting families through unnecessary suffering that perhaps prognostication is better to do that. And when we actually did some qualitative work with the rest survivors we found that a similar thing happened. In this vignette that patient describes a case of the cardiologist being extremely negative and said that you'd be a vegetable for the rest of your life and be living off machines, the neurologist came in, don't even need the respirator, took them off and there the patient is. Another quote that we had I know there are certain time constraints when you can say something that someone is plausibly and truly dead. I think I prefer the medical personnel didn't use that especially since I was in such a state and my family was there. Now Dan gave a really great overview of the ethical issues with donation after cardiac death. It will allow me to go very quickly through this. He already mentioned sort of the general protocol and also this concept of do we really use this term irreversible or should we actually use the term permanent? Bernat really talked about this eloquently in a somewhat recent article. Argued that we really need to talk about permanence. And one of the issues here is the Lazarus phenomenon essentially is auto resuscitation after 10 minutes and you basically cease resuscitation measures. The person looks dead and 10 minutes later they wake up and auto resuscitate. Exceedingly rare. But nonetheless it does in fact happen and calls into question whether we should be using a 75 second donation after cardiac death rule. And as Dan mentioned, the fact is these organs are not irreversibly dead. They are restarted in the recipients. And so it really is an issue that resuscitation is possible but it's just not intended and it's not done. So it's really a permanent. In a sense though the person is dead because we say they are dead and not because of some external standard necessarily. I think it's important that we get this idea of a Lazarus phenomenon from the Gospels and we have this very poignant statement and if DCD is not this then I don't know what is. So I would agree with Dan that we may be a little uncomfortable with it but it really makes it a very strong social statement of altruism. But so wrapping up, does this really leave us with this idea that perhaps death is about, is really relative? You can choose your own criteria for death and maybe we should be talking to patients more about futility. Maybe we even need an advanced death directive. What sort of criteria do you want to be used so that you can declare that you are dead? This would be helpful. We get rid of the dead donor rule. There's no time delay. We don't have to wait 75 seconds. We can take the organs right away. No universal declaration of death and these ideas of near death and brought me back to patients use all the time. We can basically accept those and say, yeah, actually you were dead rather than kind of rolling our eyes as we tend to do. There are some conflicts of interest here. There's sort of a classic society versus individual conflicts of interest. We talk about the organs but also about healthcare budgets and get people out of the ICU if they're dead, they're much cheaper. It also puts ER docs at a difficult position. Are they a patient or are they a donor? Unconscious social biases may play a role in how we decide this. Again, a young person versus an old person, a mom in a minivan accident versus a drug user on the street. So, yeah, there have been issues that come up with this. There's an organ recovery ambulance that goes around in New York and finds the organs. I think there may be some problems here. They have a lot of nice things built in there to try to prevent it from causing problems but the reality is I think it will show up in some neighborhoods and not in others. There are other some problems too and maybe if people choose future fraction as their diagnosis of death we're going to have to go back to charnel houses and that may not be the right way to go. Death, is it just an ethical, legal and clinical fiction that allows us to justify transplantation? I don't think so. It may not be perfect but it's kind of the best that we have at this point and I would agree actually with the President's commission that we need to keep the dead donor rule. We need to talk maybe not about irreversible but permanent cessation. This gives us continuity with what's happened before. It gives us stability and certainly it gives us a social sanction for transplantation which is something that I think all of us would agree is a good thing. So thank you very much for your attention. So I brought to the group Nepal and I've tracked many times in the Himalayas and it's a Tibetan Buddhist culture. This summer I also took a course on Tibetan medicine and they believe that the body is not dead until the soul re-enters and that period can take anywhere up to 45, 60 days and the body is absolutely left in a quiet state until the monks are certain that that soul has re-entered which creates an enormous wrinkle in your concept of what it really means to be dead. Absolutely and I'm sorry I didn't have time to even bring up the concept of other cultural perceptions on this but I would ask you how have you dealt with that in the ethics courses in the hospital? That's an area that we have not yet tackled. Partly because most of the students are Hindu and some are Buddhist and they are learning western medicine. They speak English in all their courses and these are traditional Tibetan Buddhist beliefs and at what part do we invade those cultural beliefs with another very different model of medical illness while also preserving the beauty of the spiritual, the religious, the cultural you know, things that exist around the world. Absolutely thank you. I want to thank the audience for attending the 26th annual McLean Center Conference and being hearty and staying till the end. It's always wonderful to welcome you back to the university and to the center. The weather this time was colder than at any time that I can remember in the history of the 26th McLean conferences. I can guarantee you the weather will be warmer next year. Thank you all for coming.