WEBVTT - The Girl Who Died Twice 0:00:04.760 --> 0:00:09.040 Jehi Macmath entered the hospital December ninth, twenty thirteen. By 0:00:09.080 --> 0:00:13.200 December twelfth, the medical staff at Children's Hospital declared that 0:00:13.320 --> 0:00:18.119 Jehi was, in fact brain did. Already, Jehi's family did 0:00:18.120 --> 0:00:22.439 not feel that Jehi got the kind of care that 0:00:22.480 --> 0:00:25.000 she should have gotten, and so to come before the 0:00:25.040 --> 0:00:28.480 family now and say, oh, yeah, her heart still seems 0:00:28.520 --> 0:00:31.840 to be beating, but no, no, no, she's actually did 0:00:32.280 --> 0:00:35.199 I think that that was always going to be a 0:00:35.280 --> 0:00:37.960 hard pill to swallow. 0:00:39.040 --> 0:00:42.320 Yilanda Wilson is talking about the case of Jehi Macmath, 0:00:42.920 --> 0:00:47.320 a thirteen year old girl from Oakland, California. Jahai's story 0:00:47.400 --> 0:00:51.760 caught her attention soon after it became national news. Ylanda 0:00:52.120 --> 0:00:55.360 is a professor of health Catholics at Saint Lewis University. 0:00:56.200 --> 0:00:59.880 She could sense right away that Jehi's case was incredibly difficult. 0:01:00.840 --> 0:01:07.640 Jehi McMath's family was understandably distraught at the possible loss 0:01:07.680 --> 0:01:14.840 of their child. They did not accept that Jahai was 0:01:15.360 --> 0:01:16.679 in fact brain did. 0:01:18.000 --> 0:01:21.080 Jehai originally came to the hospital for a routine surgery, 0:01:21.920 --> 0:01:25.319 and overall, her family says she was friendly and happy 0:01:25.400 --> 0:01:29.120 and in good health, but she had issues with snoring, 0:01:29.280 --> 0:01:33.120 that caused her trouble sleeping, so Jahai's doctor recommended that 0:01:33.160 --> 0:01:34.160 she get a tonsilecto. 0:01:34.240 --> 0:01:39.319 Me even the slightly more complex procedure of the tonsils 0:01:39.319 --> 0:01:41.919 and adenoids, I think we think of that as fairly 0:01:42.040 --> 0:01:45.520 routine and not something that you wouldn't be able to 0:01:45.520 --> 0:01:46.880 come home from. 0:01:47.560 --> 0:01:50.280 In the recovery room, it seemed like the procedure had 0:01:50.280 --> 0:01:54.600 gone just fine. Nurses gave Jahai a popsicle to see 0:01:54.680 --> 0:01:57.960 her throat, but just an hour after Jahai came to 0:01:58.800 --> 0:02:02.160 she started to spit up after a ton select to me, 0:02:02.600 --> 0:02:05.720 it's normal to have some bleeding, but Jehai seemed to 0:02:05.760 --> 0:02:10.000 be bleeding a lot, so Jahai's family alerted the nurses. 0:02:10.639 --> 0:02:14.000 The nurses wrote down the family's concerns in Jehai's chart, 0:02:14.880 --> 0:02:18.720 but nothing further happened. Jahai's grandmother, who had been a 0:02:18.800 --> 0:02:22.320 nurse for thirty years at a local surgery clinic, told 0:02:22.440 --> 0:02:26.920 anyone who had listened that Jahai's bleeding seemed abnormal, but 0:02:26.960 --> 0:02:31.919 the physicians decided no intervention was necessary. Jahai's family said 0:02:31.960 --> 0:02:35.200 they tried for hours to get anyone at the hospital 0:02:35.280 --> 0:02:35.960 to take action. 0:02:37.160 --> 0:02:41.160 Jehai's mother said no one was listening to us, and 0:02:41.240 --> 0:02:43.440 I can't prove it, but I really feel in my 0:02:43.560 --> 0:02:46.880 heart that if Jehi was a little white girl, I 0:02:46.919 --> 0:02:48.720 feel that we would have gotten a little bit more 0:02:48.720 --> 0:02:49.400 help and attention. 0:02:50.560 --> 0:02:53.640 Jehai and her family are black, and it's worth noting 0:02:53.680 --> 0:02:56.480 that there is a long history of racism against black 0:02:56.520 --> 0:02:59.919 people in healthcare, so there is a much larger con 0:03:00.080 --> 0:03:04.200 text behind her mother's distrust. Four and a half hours 0:03:04.240 --> 0:03:08.200 after Jahi's bleeding started, her grandmother noticed a sharp drop 0:03:08.240 --> 0:03:11.880 off in her blood, oxygen levels, and heart rate. Jehai's 0:03:11.880 --> 0:03:16.720 grandmother alerted the nurses, and finally they listened. Several doctors 0:03:16.720 --> 0:03:20.240 and nurses rushed into the room, but by then it 0:03:20.280 --> 0:03:24.119 was too late. Jahai's surgery sight had hemorrhaged. 0:03:24.480 --> 0:03:27.520 Due to the blood loss. Jehi went into cardiac arrest 0:03:28.360 --> 0:03:32.760 and her brain was deprived of oxygen, and so she 0:03:33.200 --> 0:03:38.520 was brain died. The medical staff encouraged the family to 0:03:38.560 --> 0:03:41.560 withdraw any kind of continuing care since she was brain deed, 0:03:42.200 --> 0:03:43.920 and to donate her organs. 0:03:45.640 --> 0:03:49.520 That's when something happened to turn Jahi's case from one 0:03:49.560 --> 0:03:53.200 family's tragedy into a story that made national headlines for 0:03:53.360 --> 0:03:58.960 years to come. Jehai's family told the hospital no, they 0:03:59.000 --> 0:04:02.520 did not accept the Jahai was dead, and they refused 0:04:02.600 --> 0:04:05.200 to let the doctors take Jahai off life support. 0:04:05.920 --> 0:04:09.000 The family, for, you know, for lots of reasons that 0:04:09.120 --> 0:04:12.680 I think may be quite reasonable given what they experienced, 0:04:12.960 --> 0:04:18.400 were very concerned, maybe that she was declared brain did 0:04:18.440 --> 0:04:19.159 to hastily. 0:04:20.960 --> 0:04:25.400 For days, Jehai's family held their stance. Meanwhile, the hospital 0:04:25.440 --> 0:04:29.920 grew impatient. The twenty eighteen New Yorker article about the 0:04:29.960 --> 0:04:33.039 case described a conversation between the family and one of 0:04:33.080 --> 0:04:37.280 the doctors. According to the article, the doctor pounded his 0:04:37.279 --> 0:04:40.880 fist on a table and said to Jahi's family, quote, 0:04:41.600 --> 0:04:45.000 what is it that you don't understand? She's dead? Dead 0:04:45.240 --> 0:04:50.680 dead end quote. The doctor denies saying this, but even so, 0:04:51.080 --> 0:04:55.279 Yolanda says, the disconnect was never as simple as a misunderstanding. 0:04:55.920 --> 0:04:58.080 I think it's very easy to just dismiss patients or 0:04:58.080 --> 0:05:02.240 dismiss their families as difficult or ignorant or ridiculous. But 0:05:02.400 --> 0:05:05.200 when you're coming from a place of feeling that you 0:05:05.320 --> 0:05:07.760 were not heard or cared for properly, I think it's 0:05:07.839 --> 0:05:11.839 quite rational to be upset or to have additional questions 0:05:11.880 --> 0:05:13.120 about what you're being told. 0:05:17.200 --> 0:05:18.720 I'm Laurena Rora Hutchinson. 0:05:19.040 --> 0:05:21.640 I'm the director of the Ideas Lab at the Johns 0:05:21.680 --> 0:05:27.720 Hopkins Berman Institute of Bioethics. In today's show, Brain Death, 0:05:28.800 --> 0:05:32.400 how did this concept reshape our very definition of death? 0:05:33.640 --> 0:05:37.040 We explore why some bioethicists are calling for even more 0:05:37.120 --> 0:05:40.200 nuance as we rethink the line between life and death. 0:05:41.560 --> 0:05:45.800 From Pushkin Industries and the Johns Hopkins Berman Institute of Bioethics, 0:05:46.040 --> 0:05:48.159 this is playing God. 0:05:56.600 --> 0:05:56.960 To high. 0:05:57.040 --> 0:06:01.440 Story is so sad. There was so many factors working 0:06:01.480 --> 0:06:04.279 against her and her family in the course of what 0:06:04.480 --> 0:06:08.839 was supposed to be a pretty routine procedure. We'll return 0:06:08.839 --> 0:06:12.960 to Jahia's story later in this episode, but first, there's 0:06:12.960 --> 0:06:16.840 something about it that I didn't understand. How is it 0:06:16.880 --> 0:06:20.520 that doctors and family members can disagree over what it 0:06:20.600 --> 0:06:24.400 means to die? And how exactly did we arrive at 0:06:24.400 --> 0:06:29.159 this concept of brain death? To find out, I once 0:06:29.200 --> 0:06:32.520 again reached out to my Berman Institute colleague, Jeffrey Kahn. 0:06:33.520 --> 0:06:36.520 So thanks for coming on today, Jeff to discuss this 0:06:36.680 --> 0:06:38.920 tremendously difficult and tragic story. 0:06:39.560 --> 0:06:43.680 Thank you for having me on again. Lauren and A 0:06:43.800 --> 0:06:49.400 very tragic and difficult story and really challenging to imagine 0:06:49.839 --> 0:06:53.120 losing your child after what seems to be a routine 0:06:53.160 --> 0:06:56.839 procedure in hearing that she has died. So it's a 0:06:56.880 --> 0:06:59.520 really challenging story and raises some very difficult issues as 0:06:59.520 --> 0:07:00.240 we'll discuss us. 0:07:01.320 --> 0:07:03.080 Yeah, for sure, so, Jeff. 0:07:03.080 --> 0:07:05.719 In the last episode we talked about bioethics as it 0:07:05.760 --> 0:07:09.359 relates to life and life saving technology, but not death, 0:07:09.920 --> 0:07:11.360 and so this is a bit of a change of 0:07:11.400 --> 0:07:13.320 gears for us, isn't it. 0:07:13.320 --> 0:07:16.640 It is a little bit, But without the technologies that 0:07:17.160 --> 0:07:21.200 allow people to be kept alive, we would not need 0:07:21.200 --> 0:07:23.560 to be talking about what it means to die. So 0:07:23.720 --> 0:07:27.960 there's a very clear relationship between these new life saving 0:07:28.000 --> 0:07:31.920 technologies and what now is required for us to grapple with, 0:07:32.080 --> 0:07:34.560 which is new ways of understanding what it means to 0:07:34.560 --> 0:07:34.960 be dead. 0:07:36.600 --> 0:07:38.800 I'm not really used to thinking about death as if 0:07:38.840 --> 0:07:41.720 it's ambiguous. I always thought that it was the you're 0:07:41.760 --> 0:07:44.640 either dead or you're not, and I. 0:07:44.560 --> 0:07:49.520 Think most of us feel that way too, And for millennia, 0:07:49.640 --> 0:07:52.240 really for all of human history, it was very clear 0:07:52.280 --> 0:07:55.400 when people died, they stopped breathing, their hearts up beating 0:07:55.720 --> 0:07:58.880 and they turned blue, and it was obvious that they 0:07:58.880 --> 0:08:03.600 were dead. With the advent of technologies like ventilators, people's 0:08:03.840 --> 0:08:07.520 bodies could be kept alive and it seemed indefinitely, even 0:08:07.560 --> 0:08:10.800 though it seemed like their brains no longer functioning and 0:08:10.880 --> 0:08:14.200 the person, the people that were represented by that body 0:08:14.480 --> 0:08:19.040 were no longer there. And so technology has demanded us 0:08:19.080 --> 0:08:22.560 to grapple with what it means for a body to 0:08:22.600 --> 0:08:25.720 be kept alive when maybe the person is no longer 0:08:25.760 --> 0:08:26.160 with us. 0:08:27.720 --> 0:08:30.800 So you said that it's a newer way to talk 0:08:30.800 --> 0:08:34.360 about death. So where does this concept come from then. 0:08:35.360 --> 0:08:39.560 Well, it really was spurred by the technologies that allowed 0:08:39.600 --> 0:08:42.480 people to be kept alive when that wasn't possible before. 0:08:43.000 --> 0:08:46.720 So when people were unconscious after an accident or a 0:08:46.760 --> 0:08:49.880 stroke or some kind of an incident that made it 0:08:50.160 --> 0:08:52.720 necessary for a machine to help them breathe. Before those 0:08:52.920 --> 0:08:56.160 machines called ventilators were available, they would have just died. 0:08:56.559 --> 0:09:01.000 But with the advent of a mechanical ventilation, people could 0:09:01.080 --> 0:09:04.200 be kept alive hopefully to recover. They could be treated, 0:09:04.240 --> 0:09:07.880 and they would recover and breathe on their own and 0:09:07.920 --> 0:09:12.160 maybe eventually leave the hospital. Ventilators brought with it some 0:09:12.800 --> 0:09:16.400 very clear questions about when it was time to turn 0:09:16.440 --> 0:09:20.320 off the ventilator and allow the body to die. And 0:09:20.360 --> 0:09:25.160 so a Harvard committee was convened to actually craft the 0:09:25.160 --> 0:09:29.400 first definitions of what became known as neurological death, and 0:09:29.520 --> 0:09:33.040 sometimes in common language we call it brain death. So 0:09:33.120 --> 0:09:36.320 when a person is declared dead not because their body 0:09:36.360 --> 0:09:39.680 has died, but because their brain has stopped functioning in 0:09:39.880 --> 0:09:43.000 very clearly defined ways, So their brain has died even 0:09:43.040 --> 0:09:44.560 if their body has not. 0:09:45.600 --> 0:09:47.240 So was Jahi on a ventilator. 0:09:48.559 --> 0:09:52.000 She was maintained on a ventilator for some period of time, 0:09:52.520 --> 0:09:56.080 raising exactly the kinds of questions that came up going 0:09:56.080 --> 0:09:59.400 back to the nineteen sixties, and really importantly to say, 0:09:59.640 --> 0:10:03.800 those issues are with us every day and hospitals around 0:10:03.840 --> 0:10:07.800 the world. So these issues started in the nineteen sixties 0:10:07.840 --> 0:10:09.040 and continue with us today. 0:10:10.440 --> 0:10:13.120 So can you help me understand what brain death is exactly? 0:10:13.360 --> 0:10:15.800 So how is it different to a coma? Is being 0:10:15.840 --> 0:10:18.960 brain dead sort of like a highly technical diagnosis for 0:10:19.040 --> 0:10:20.720 a person who'll never wake up again. 0:10:21.480 --> 0:10:24.320 It's a lot like what you're describing. It is a 0:10:24.360 --> 0:10:28.480 pretty technical definition. It's different than coma, and that people 0:10:28.600 --> 0:10:32.640 can wake up from comas, certain aspects of brain function 0:10:32.840 --> 0:10:36.360 remain in coma that are gone. In the case of 0:10:36.840 --> 0:10:41.280 neurological death or brain death, certain important parts of brain 0:10:41.280 --> 0:10:44.760 function have stopped and won't come back. So that's a 0:10:44.800 --> 0:10:47.679 really important aspect of brain death. So there's been a 0:10:47.720 --> 0:10:53.079 determination by neurologists that those brain functions that allow us 0:10:53.120 --> 0:10:56.200 to be the people we think of as persons are 0:10:56.240 --> 0:11:01.280 gone and will not return. The challenges. People lying in 0:11:01.520 --> 0:11:04.200 bed on a ventilator who are diagnosed as being in 0:11:04.240 --> 0:11:07.679 a coma look very much like somebody who's asleep, look 0:11:07.840 --> 0:11:10.600 very much like someone who can be declared brain dead, 0:11:11.000 --> 0:11:14.240 and so that's why it's really confusing for families to 0:11:14.320 --> 0:11:18.280 distinguish somebody being asleep from somebody being brain dead or 0:11:18.280 --> 0:11:22.959 in a coma, And so it relies on assessment by experts, 0:11:23.360 --> 0:11:25.360 and so that's I think part of why this is 0:11:25.360 --> 0:11:30.560 a really difficult concept both to understand just as interested people, 0:11:30.600 --> 0:11:33.079 but also if you're a family member in a position 0:11:33.120 --> 0:11:36.640 that's being told your loved one is not going to 0:11:36.640 --> 0:11:39.600 wake up and it's time to remove life support and 0:11:39.679 --> 0:11:40.720 to declare them dead. 0:11:41.240 --> 0:11:43.960 Yeah, so I could see how it's confusing So would 0:11:44.000 --> 0:11:46.400 you say that the brain death definition was meant to 0:11:46.440 --> 0:11:50.240 provide a kind of humane release for someone who's being 0:11:50.360 --> 0:11:53.840 kept alive who might not want to under these circumstances, 0:11:53.920 --> 0:11:56.880 and also for those families who won't get the love 0:11:56.960 --> 0:11:59.480 on back and they need some kind of sense of closure. 0:12:00.800 --> 0:12:04.080 Yes, And I think it was meant to avoid what 0:12:04.280 --> 0:12:09.800 felt like a very unacceptable outcome where a patient's body 0:12:09.800 --> 0:12:12.800 could be kept alive for a very long time with 0:12:12.920 --> 0:12:17.040 no possibility of their ever becoming aware of their surroundings. Again, 0:12:17.120 --> 0:12:19.600 that they would never wake up, and that seems like 0:12:19.760 --> 0:12:23.560 something that almost nobody would want to have happened to them. 0:12:23.960 --> 0:12:26.520 And so it created a way for us to say, 0:12:27.080 --> 0:12:30.920 this person is dead, just as if their heart stopped 0:12:30.920 --> 0:12:34.680 beating and they stop breathing. This machine is what's keeping 0:12:34.760 --> 0:12:37.719 them alive, but otherwise they're dead. 0:12:37.640 --> 0:12:38.880 And is not the only reason. 0:12:39.240 --> 0:12:42.000 Well, it turns out that there's a kind of secondary 0:12:42.600 --> 0:12:46.440 effect of maintaining people on life support after they have 0:12:46.520 --> 0:12:49.360 been declared brain dead. It makes it possible for their 0:12:49.480 --> 0:12:52.120 organs to be donated for transplant in a way that 0:12:52.240 --> 0:12:56.200 would not be possible if we waited for whole body death. 0:12:56.679 --> 0:13:00.600 So when a person's heart stops speeding and stop breathing, 0:13:00.640 --> 0:13:03.400 and they're declared that way, their organs are no longer 0:13:03.520 --> 0:13:08.160 usable for transplant. But if an individual is declared brain dead, 0:13:08.480 --> 0:13:12.120 their body can be maintained on a ventilator and their 0:13:12.240 --> 0:13:16.440 organs can be collected and transplanted to numerous other people 0:13:16.800 --> 0:13:19.360 to help save their lives. They go hand in hand. 0:13:19.400 --> 0:13:23.120 It isn't that brain death was created as a concept 0:13:23.240 --> 0:13:26.800 to allow organ donation and organ transplant, but they're very 0:13:26.800 --> 0:13:27.760 closely related. 0:13:28.000 --> 0:13:30.880 But that's not the motivation as to why doctors declare 0:13:30.920 --> 0:13:31.880 people brain dead. 0:13:31.960 --> 0:13:35.960 Right, And the decision to donate organs on the part 0:13:35.960 --> 0:13:40.040 of the family is intentionally separated from the decision about 0:13:40.160 --> 0:13:43.439 removing life support as a way of making sure that 0:13:43.480 --> 0:13:47.120 the decision to declare somebody dead is not motivated by 0:13:47.200 --> 0:13:49.520 the opportunity to collect their organs. 0:13:50.040 --> 0:13:53.240 Okay, that makes sense. So from what you've said so far, 0:13:53.280 --> 0:13:55.400 it sounds to me like you're saying that brain death 0:13:55.520 --> 0:13:58.920 was socially constructed and that it's something that was agreed 0:13:59.000 --> 0:14:02.080 upon by experts for a reason. 0:14:02.920 --> 0:14:06.280 I think that's exactly the right way to characterize it. 0:14:07.080 --> 0:14:09.280 If we have a way to keep a body alive 0:14:09.480 --> 0:14:14.080 by this life support technology. We do need a societally 0:14:14.120 --> 0:14:17.000 agreed upon social construct of what it means to die 0:14:17.559 --> 0:14:21.640 by this other set of criteria, by neurological criteria, by 0:14:21.680 --> 0:14:25.920 brain criteria. And so it is very widely accepted, and 0:14:26.240 --> 0:14:28.640 every state in the United States accepts it, and it 0:14:28.720 --> 0:14:32.760 is accepted by the expert community. There are some members 0:14:32.800 --> 0:14:36.080 of society that do not accept it, mostly based on 0:14:36.320 --> 0:14:40.160 religious belief that that kind of definition of death doesn't 0:14:40.200 --> 0:14:42.320 count for them. The only death that counts this whole 0:14:42.360 --> 0:14:47.080 body death. But that's a small subset of the American 0:14:47.160 --> 0:14:48.680 and I would say world population. 0:14:49.720 --> 0:14:53.520 Okay, So given that brain death is a social construct, 0:14:53.600 --> 0:14:57.920 I could understand why some people might find it harder 0:14:58.000 --> 0:15:00.680 to accept this definition. 0:15:01.640 --> 0:15:05.040 It's true, and in particular, if you are from a 0:15:05.080 --> 0:15:07.880 community that feels as if their views have not been 0:15:07.920 --> 0:15:13.400 respected and represented, it's understandable that there would be suspicion 0:15:13.920 --> 0:15:16.920 when people who don't look like you and don't seem 0:15:16.920 --> 0:15:21.240 to represent your views and maybe your values show up 0:15:21.280 --> 0:15:24.200 and say your loved one is dead. It's time to 0:15:24.240 --> 0:15:28.840 remove this machine from them, even though they're warm and 0:15:29.000 --> 0:15:31.200 breathing and their heart is still beating and they, as 0:15:31.240 --> 0:15:34.160 I said before, look like they're asleep. And so it's 0:15:34.320 --> 0:15:40.160 very understandable that this debate is happening at the bedside 0:15:40.440 --> 0:15:45.840 sometimes between medical experts and the patient's families. And it's 0:15:45.880 --> 0:15:48.480 I think very understandable that in a case like Jahai 0:15:48.640 --> 0:15:52.720 make Maths, the family was not fully trusting of what 0:15:52.760 --> 0:15:55.160 they were hearing from the people who were telling them 0:15:55.480 --> 0:15:59.080 that their daughter was now dead. It, I think, to me, 0:15:59.560 --> 0:16:05.080 unders wars the importance of explanation and trust and listening 0:16:05.400 --> 0:16:09.280 and trying to make clear that the values that are 0:16:09.280 --> 0:16:11.480 being expressed by the family are those that are being 0:16:11.520 --> 0:16:13.840 respected by the institutions. 0:16:15.040 --> 0:16:17.760 Okay, thank you. That helps me make a lot more 0:16:17.760 --> 0:16:21.920 sense of what's gone on in Jehia's case and how 0:16:21.960 --> 0:16:25.080 there can be any ambiguity around whether someone's died or not. 0:16:25.440 --> 0:16:27.400 So thanks so much for explaining that to us. 0:16:28.000 --> 0:16:31.600 Thanks for the good conversation today. 0:16:32.400 --> 0:16:35.160 We're going to take a short break. When we return, 0:16:35.440 --> 0:16:38.240 we'll hear from a physician who studied the case of 0:16:38.320 --> 0:16:42.840 Jehi macmath. He thinks his profession needs to better understand 0:16:42.920 --> 0:16:45.720 the pain and mistrust grieving families feel. 0:16:46.680 --> 0:16:51.520 I could understand why people might not accept the diagnosis 0:16:51.520 --> 0:16:54.520 of brain death, and also that it was a legitimate objection, 0:16:54.600 --> 0:16:56.440 and I began to think about better ways that we 0:16:56.480 --> 0:16:58.520 could talk about what brain death means. 0:16:59.520 --> 0:17:12.840 Playing God, godd will be right back. Jehi Macmath has 0:17:12.880 --> 0:17:17.360 two death certificates, one in California when she was declared 0:17:17.480 --> 0:17:21.360 brain dead and one in New Jersey, issued more than 0:17:21.400 --> 0:17:27.040 four years later when her organs finally gave out. Once 0:17:27.080 --> 0:17:31.240 the California hospital declared Jehai brain dead on December twelfth, 0:17:31.280 --> 0:17:34.720 twenty thirteen, she could no longer be kept on life 0:17:34.720 --> 0:17:39.119 support long term, but Jehai's family refused to let the 0:17:39.200 --> 0:17:44.960 hospital end treatment. Jehai's mother told doctors that according to 0:17:45.000 --> 0:17:48.120 her Christian faith, someone is alive as long as their 0:17:48.119 --> 0:17:52.280 heart is beating, and life support was keeping Jahi's heart beating. 0:17:53.720 --> 0:17:56.919 So Jehai's family transferred her to a care facility in 0:17:56.960 --> 0:17:59.959 New Jersey, the only state in the US that had 0:18:00.000 --> 0:18:03.600 allows people to opt out of death by brain criteria 0:18:03.680 --> 0:18:06.960 even if the hospital or doctor doesn't support it. They 0:18:07.000 --> 0:18:10.840 permit exceptions based on deeply held philosophical. 0:18:10.119 --> 0:18:11.679 Or religious views. 0:18:12.760 --> 0:18:15.840 Jehai was kept on life support for more than four years. 0:18:16.320 --> 0:18:19.960 In that time, her body even went through puberty, but 0:18:20.080 --> 0:18:24.679 eventually even the machines couldn't keep her organs functioning, so 0:18:24.760 --> 0:18:28.720 on June twenty nine, twenty eighteen, New Jersey issued Jahai's 0:18:28.760 --> 0:18:33.159 second death certificate. The fact that Jahi was issued to 0:18:33.440 --> 0:18:37.359 death certificates is just one example of the gray area 0:18:37.480 --> 0:18:41.159 created by brain death and how it can present problems. 0:18:41.880 --> 0:18:44.000 I think for any intensive care doctor, it's one of 0:18:44.080 --> 0:18:47.280 the things that we hopefully take the most pride in 0:18:47.520 --> 0:18:49.920 as being able to work with families who are going 0:18:49.960 --> 0:18:54.080 through truly the most painful moments of their life. You know, 0:18:54.400 --> 0:18:56.600 times they will never forget for as long as they live. 0:18:57.600 --> 0:19:01.040 This is Bob Drug. He's a professor of medical ethics 0:19:01.040 --> 0:19:05.000 at Harvard. He's also an intensive care physician at Boston 0:19:05.200 --> 0:19:09.000 Children's Hospital, and in that role he sometimes has to 0:19:09.040 --> 0:19:12.920 deliver the news to families that their child isn't coming back, 0:19:13.680 --> 0:19:17.080 that they're brain dead. His interest in the ethics of 0:19:17.119 --> 0:19:19.880 brain death started back when he was a medical student. 0:19:20.640 --> 0:19:23.760 He says, from the moment he first encountered the concept 0:19:23.760 --> 0:19:26.720 of brain death, he felt like it didn't quite match 0:19:26.800 --> 0:19:29.320 up to what he was seeing and how he thought 0:19:29.359 --> 0:19:30.960 about what it means to be dead. 0:19:31.960 --> 0:19:34.800 We were told that you do these tests, you see 0:19:34.840 --> 0:19:38.119 if the child's pupils react to light or they respond 0:19:38.200 --> 0:19:41.560 to a painful stimulus, and you go through this battery 0:19:41.600 --> 0:19:44.280 of tests, and if you do that and all the 0:19:44.320 --> 0:19:47.840 tests come out negative, the patient is dead. It didn't 0:19:47.880 --> 0:19:52.040 correspond to kind of what I'd always thought about death, 0:19:52.200 --> 0:19:55.520 you know, having had grandparents die and things like that. 0:19:55.560 --> 0:19:59.480 These patients did not look like what you would typically 0:19:59.480 --> 0:20:01.959 think of as a head person. Their hearts were beating, 0:20:02.800 --> 0:20:06.960 their skin was warm, they had pulses, their chest was 0:20:07.000 --> 0:20:10.280 going up and down with breaths, all of those things 0:20:10.440 --> 0:20:12.080 a brain dead person can do. 0:20:13.400 --> 0:20:16.320 He tried to talk about his reservations with his instructors 0:20:16.320 --> 0:20:19.320 and classmates, but he says they shut him down. 0:20:20.520 --> 0:20:24.800 I met with a very strong dogma within the profession, 0:20:25.560 --> 0:20:29.159 which is that this is simply death, as if there 0:20:29.200 --> 0:20:32.480 should be obvious to anyone who looked at the situation. 0:20:33.560 --> 0:20:37.080 Over time, Bob grew more convinced that it's not obvious 0:20:37.200 --> 0:20:41.000 that brain death is death. In twenty eighteen, he was 0:20:41.040 --> 0:20:45.320 interviewed for the New Yorker article about Jehi Macmath. Bob 0:20:45.359 --> 0:20:48.800 said that the disconnect between Jehi's family and her doctors 0:20:48.920 --> 0:20:53.919 was understandable. Since then, Bob has continued to study and 0:20:53.960 --> 0:20:58.320 write about the complex social issues surrounding brain death, and 0:20:58.359 --> 0:21:01.560 he often uses Jahai's case as an example of how 0:21:01.600 --> 0:21:05.040 things can go wrong. So I wanted to hear more 0:21:05.119 --> 0:21:07.840 about what he thinks the problems are with the way 0:21:07.920 --> 0:21:09.600 brain death is conceptualized. 0:21:10.560 --> 0:21:14.440 What brain death does is it says, if you are 0:21:15.640 --> 0:21:20.720 permanently unconscious and have permanently lost the capacity for spontaneous respiration, 0:21:21.960 --> 0:21:25.560 we consider you to be dead. You are legally dead. 0:21:26.680 --> 0:21:27.000 Now. 0:21:27.760 --> 0:21:33.640 The reason why this has largely been accepted, I think 0:21:33.800 --> 0:21:37.000 by the American public and certainly most of the Western world, 0:21:37.400 --> 0:21:40.359 has been that for many people, if they're never going 0:21:40.400 --> 0:21:41.960 to wake up again and never going to breathe on 0:21:41.960 --> 0:21:45.280 their own again, they'd go like, fine, you know, I mean, 0:21:45.320 --> 0:21:47.960 this is my view. I am as good as dead, 0:21:47.960 --> 0:21:50.159 and in fact, if my organs could help save the 0:21:50.200 --> 0:21:52.919 life of somebody else when I'm in that condition, I 0:21:52.960 --> 0:21:56.679 would like you to use them for that purpose. The 0:21:56.720 --> 0:21:59.359 thing is we haven't been transparent about that. We haven't 0:21:59.480 --> 0:22:02.040 said that that's exactly what we're doing. And I thought 0:22:02.040 --> 0:22:04.960 that the alleged quote from Johi mcmaths, physician of what 0:22:05.119 --> 0:22:07.800 is it you don't understand about death? She's dead dead 0:22:07.920 --> 0:22:11.960 dead is kind of a way of trying to overcome 0:22:12.119 --> 0:22:13.520 that lack of transparency. 0:22:14.560 --> 0:22:17.119 And so, if it is a social construct, would you 0:22:17.160 --> 0:22:20.280 say then that it becomes understood differently by different people 0:22:20.320 --> 0:22:23.800 who have different positions in society or experiences. 0:22:24.560 --> 0:22:28.359 Well, you know, I think that's actually a debatable point 0:22:28.520 --> 0:22:31.520 because there's many social constructs that we don't give people 0:22:31.640 --> 0:22:34.600 choices about. You know, the idea that you can't marry 0:22:34.640 --> 0:22:38.040 more than one person. There's nothing biological about it that 0:22:38.040 --> 0:22:40.720 says you can't, and yet we've all agreed in our 0:22:40.720 --> 0:22:45.600 society that each person can only have one legal spouse. 0:22:45.920 --> 0:22:48.800 There's all sorts of social constructs that we force on 0:22:48.880 --> 0:22:51.840 people in our society, and legitimately that's so that we 0:22:51.840 --> 0:22:55.800 can all live together peacefully. So it's absolutely it's a 0:22:55.800 --> 0:22:59.040 social construct. But I also think there's a reasonable argument 0:22:59.119 --> 0:23:03.919 for people who don't accept that social construct to at 0:23:04.000 --> 0:23:07.400 least have the opportunity to express that view and perhaps 0:23:07.480 --> 0:23:11.680 even have the right to reject that diagnosis if it's 0:23:11.760 --> 0:23:14.359 not a social construct that they agree with. 0:23:15.359 --> 0:23:19.399 And so would you say it is accurates to say 0:23:19.760 --> 0:23:23.119 in Jahi's case that the family were right in thinking 0:23:23.160 --> 0:23:26.840 that she was still alive in terms of their understanding 0:23:27.119 --> 0:23:32.400 of the word death, but then also simultaneously the doctors 0:23:32.440 --> 0:23:33.960 were right to say she was dead. 0:23:34.320 --> 0:23:36.400 I'm a little bit reluctant to say one was right 0:23:36.680 --> 0:23:39.560 or they both were right. I think the doctors were 0:23:40.080 --> 0:23:46.520 wrong in dismissing the question why is she dead? Were 0:23:46.560 --> 0:23:48.600 they behaving in the way that they had been trained, 0:23:48.640 --> 0:23:50.360 the way that I had been trained? Yes, they were, 0:23:50.880 --> 0:23:51.920 but that doesn't make it right. 0:23:53.000 --> 0:23:56.320 Do you feel that there's an alternative framework to brain 0:23:56.400 --> 0:23:59.640 death that you think might be more ethical or less 0:23:59.640 --> 0:24:01.280 ambiguit Yes. 0:24:01.520 --> 0:24:05.399 My preferred choice is to define death the way that 0:24:05.480 --> 0:24:08.760 it has actually been diagnosed for the last forty years, 0:24:09.520 --> 0:24:13.359 which is, if we determine that you're permanently unconscious and 0:24:13.400 --> 0:24:17.080 have permanently lost the capacity for spontaneous respiration, you are 0:24:17.160 --> 0:24:22.000 legally dead, and that allows patients to donate organs and 0:24:22.160 --> 0:24:25.280 organs to be procured without violating the dead donor rule. 0:24:25.880 --> 0:24:28.840 But I also believe that we should allow patients to 0:24:28.880 --> 0:24:32.520