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Life-and-death dilemmas. New medical technologies. Controversial treatments. In playing god? we hear from the patients whose lives were transformed—and sometimes saved—by medical innovations and the bioethicists who help guide complex decisions.
Ventilators can keep critically ill people alive, but when is it acceptable to turn the machines off? Organ transplants save lives, but when demand outpaces supply, how do we decide who gets them? Novel reproductive technologies can help people have babies in ways that are far beyond what nature allows. So, when should these “Brave New World” technologies be introduced, and who should control them?
playing god? is a production of the Berman Institute of Bioethics at Johns Hopkins University, with generous support from The Greenwall Foundation. New episodes drop every Tuesday.
The Berman Institute has created a guide for each episode where you can learn more about the guests, the history, and the ethics issues at: bioethics.jhu.edu/playing-god
00:00:04
Speaker 1: Jehi Macmath entered the hospital December ninth, twenty thirteen. By December twelfth, the medical staff at Children's Hospital declared that Jehi was, in fact brain did. Already, Jehi's family did not feel that Jehi got the kind of care that she should have gotten, and so to come before the family now and say, oh, yeah, her heart still seems to be beating, but no, no, no, she's actually did I think that that was always going to be a hard pill to swallow.
00:00:39
Speaker 2: Yilanda Wilson is talking about the case of Jehi Macmath, a thirteen year old girl from Oakland, California. Jahai's story caught her attention soon after it became national news. Ylanda is a professor of health Catholics at Saint Lewis University. She could sense right away that Jehi's case was incredibly difficult.
00:01:00
Speaker 1: Jehi McMath's family was understandably distraught at the possible loss of their child. They did not accept that Jahai was in fact brain did.
00:01:18
Speaker 2: Jehai originally came to the hospital for a routine surgery, and overall, her family says she was friendly and happy and in good health, but she had issues with snoring, that caused her trouble sleeping, so Jahai's doctor recommended that she get a tonsilecto.
00:01:34
Speaker 1: Me even the slightly more complex procedure of the tonsils and adenoids, I think we think of that as fairly routine and not something that you wouldn't be able to come home from.
00:01:47
Speaker 2: In the recovery room, it seemed like the procedure had gone just fine. Nurses gave Jahai a popsicle to see her throat, but just an hour after Jahai came to she started to spit up after a ton select to me, it's normal to have some bleeding, but Jehai seemed to be bleeding a lot, so Jahai's family alerted the nurses. The nurses wrote down the family's concerns in Jehai's chart, but nothing further happened. Jahai's grandmother, who had been a nurse for thirty years at a local surgery clinic, told anyone who had listened that Jahai's bleeding seemed abnormal, but the physicians decided no intervention was necessary. Jahai's family said they tried for hours to get anyone at the hospital to take action.
00:02:37
Speaker 1: Jehai's mother said no one was listening to us, and I can't prove it, but I really feel in my heart that if Jehi was a little white girl, I feel that we would have gotten a little bit more help and attention.
00:02:50
Speaker 2: Jehai and her family are black, and it's worth noting that there is a long history of racism against black people in healthcare, so there is a much larger con text behind her mother's distrust. Four and a half hours after Jahi's bleeding started, her grandmother noticed a sharp drop off in her blood, oxygen levels, and heart rate. Jehai's grandmother alerted the nurses, and finally they listened. Several doctors and nurses rushed into the room, but by then it was too late. Jahai's surgery sight had hemorrhaged.
00:03:24
Speaker 1: Due to the blood loss. Jehi went into cardiac arrest and her brain was deprived of oxygen, and so she was brain died. The medical staff encouraged the family to withdraw any kind of continuing care since she was brain deed, and to donate her organs.
00:03:45
Speaker 2: That's when something happened to turn Jahi's case from one family's tragedy into a story that made national headlines for years to come. Jehai's family told the hospital no, they did not accept the Jahai was dead, and they refused to let the doctors take Jahai off life support.
00:04:05
Speaker 1: The family, for, you know, for lots of reasons that I think may be quite reasonable given what they experienced, were very concerned, maybe that she was declared brain did to hastily.
00:04:20
Speaker 2: For days, Jehai's family held their stance. Meanwhile, the hospital grew impatient. The twenty eighteen New Yorker article about the case described a conversation between the family and one of the doctors. According to the article, the doctor pounded his fist on a table and said to Jahi's family, quote, what is it that you don't understand? She's dead? Dead dead end quote. The doctor denies saying this, but even so, Yolanda says, the disconnect was never as simple as a misunderstanding.
00:04:55
Speaker 1: I think it's very easy to just dismiss patients or dismiss their families as difficult or ignorant or ridiculous. But when you're coming from a place of feeling that you were not heard or cared for properly, I think it's quite rational to be upset or to have additional questions about what you're being told.
00:05:17
Speaker 3: I'm Laurena Rora Hutchinson.
00:05:19
Speaker 2: I'm the director of the Ideas Lab at the Johns Hopkins Berman Institute of Bioethics. In today's show, Brain Death, how did this concept reshape our very definition of death? We explore why some bioethicists are calling for even more nuance as we rethink the line between life and death. From Pushkin Industries and the Johns Hopkins Berman Institute of Bioethics, this is playing God.
00:05:56
Speaker 3: To high.
00:05:57
Speaker 2: Story is so sad. There was so many factors working against her and her family in the course of what was supposed to be a pretty routine procedure. We'll return to Jahia's story later in this episode, but first, there's something about it that I didn't understand. How is it that doctors and family members can disagree over what it means to die? And how exactly did we arrive at this concept of brain death? To find out, I once again reached out to my Berman Institute colleague, Jeffrey Kahn. So thanks for coming on today, Jeff to discuss this tremendously difficult and tragic story.
00:06:39
Speaker 4: Thank you for having me on again. Lauren and A very tragic and difficult story and really challenging to imagine losing your child after what seems to be a routine procedure in hearing that she has died. So it's a really challenging story and raises some very difficult issues as we'll discuss us.
00:07:01
Speaker 3: Yeah, for sure, so, Jeff.
00:07:03
Speaker 2: In the last episode we talked about bioethics as it relates to life and life saving technology, but not death, and so this is a bit of a change of gears for us, isn't it.
00:07:13
Speaker 4: It is a little bit, But without the technologies that allow people to be kept alive, we would not need to be talking about what it means to die. So there's a very clear relationship between these new life saving technologies and what now is required for us to grapple with, which is new ways of understanding what it means to be dead.
00:07:36
Speaker 2: I'm not really used to thinking about death as if it's ambiguous. I always thought that it was the you're either dead or you're not, and I.
00:07:44
Speaker 4: Think most of us feel that way too, And for millennia, really for all of human history, it was very clear when people died, they stopped breathing, their hearts up beating and they turned blue, and it was obvious that they were dead. With the advent of technologies like ventilators, people's bodies could be kept alive and it seemed indefinitely, even though it seemed like their brains no longer functioning and the person, the people that were represented by that body were no longer there. And so technology has demanded us to grapple with what it means for a body to be kept alive when maybe the person is no longer with us.
00:08:27
Speaker 2: So you said that it's a newer way to talk about death. So where does this concept come from then.
00:08:35
Speaker 4: Well, it really was spurred by the technologies that allowed people to be kept alive when that wasn't possible before. So when people were unconscious after an accident or a stroke or some kind of an incident that made it necessary for a machine to help them breathe. Before those machines called ventilators were available, they would have just died. But with the advent of a mechanical ventilation, people could be kept alive hopefully to recover. They could be treated, and they would recover and breathe on their own and maybe eventually leave the hospital. Ventilators brought with it some very clear questions about when it was time to turn off the ventilator and allow the body to die. And so a Harvard committee was convened to actually craft the first definitions of what became known as neurological death, and sometimes in common language we call it brain death. So when a person is declared dead not because their body has died, but because their brain has stopped functioning in very clearly defined ways, So their brain has died even if their body has not.
00:09:45
Speaker 3: So was Jahi on a ventilator.
00:09:48
Speaker 4: She was maintained on a ventilator for some period of time, raising exactly the kinds of questions that came up going back to the nineteen sixties, and really importantly to say, those issues are with us every day and hospitals around the world. So these issues started in the nineteen sixties and continue with us today.
00:10:10
Speaker 2: So can you help me understand what brain death is exactly? So how is it different to a coma? Is being brain dead sort of like a highly technical diagnosis for a person who'll never wake up again.
00:10:21
Speaker 4: It's a lot like what you're describing. It is a pretty technical definition. It's different than coma, and that people can wake up from comas, certain aspects of brain function remain in coma that are gone. In the case of neurological death or brain death, certain important parts of brain function have stopped and won't come back. So that's a really important aspect of brain death. So there's been a determination by neurologists that those brain functions that allow us to be the people we think of as persons are gone and will not return. The challenges. People lying in bed on a ventilator who are diagnosed as being in a coma look very much like somebody who's asleep, look very much like someone who can be declared brain dead, and so that's why it's really confusing for families to distinguish somebody being asleep from somebody being brain dead or in a coma, And so it relies on assessment by experts, and so that's I think part of why this is a really difficult concept both to understand just as interested people, but also if you're a family member in a position that's being told your loved one is not going to wake up and it's time to remove life support and to declare them dead.
00:11:41
Speaker 2: Yeah, so I could see how it's confusing So would you say that the brain death definition was meant to provide a kind of humane release for someone who's being kept alive who might not want to under these circumstances, and also for those families who won't get the love on back and they need some kind of sense of closure.
00:12:00
Speaker 4: Yes, And I think it was meant to avoid what felt like a very unacceptable outcome where a patient's body could be kept alive for a very long time with no possibility of their ever becoming aware of their surroundings. Again, that they would never wake up, and that seems like something that almost nobody would want to have happened to them. And so it created a way for us to say, this person is dead, just as if their heart stopped beating and they stop breathing. This machine is what's keeping them alive, but otherwise they're dead.
00:12:37
Speaker 3: And is not the only reason.
00:12:39
Speaker 4: Well, it turns out that there's a kind of secondary effect of maintaining people on life support after they have been declared brain dead. It makes it possible for their organs to be donated for transplant in a way that would not be possible if we waited for whole body death. So when a person's heart stops speeding and stop breathing, and they're declared that way, their organs are no longer usable for transplant. But if an individual is declared brain dead, their body can be maintained on a ventilator and their organs can be collected and transplanted to numerous other people to help save their lives. They go hand in hand. It isn't that brain death was created as a concept to allow organ donation and organ transplant, but they're very closely related.
00:13:28
Speaker 2: But that's not the motivation as to why doctors declare people brain dead.
00:13:31
Speaker 4: Right, And the decision to donate organs on the part of the family is intentionally separated from the decision about removing life support as a way of making sure that the decision to declare somebody dead is not motivated by the opportunity to collect their organs.
00:13:50
Speaker 2: Okay, that makes sense. So from what you've said so far, it sounds to me like you're saying that brain death was socially constructed and that it's something that was agreed upon by experts for a reason.
00:14:02
Speaker 4: I think that's exactly the right way to characterize it. If we have a way to keep a body alive by this life support technology. We do need a societally agreed upon social construct of what it means to die by this other set of criteria, by neurological criteria, by brain criteria. And so it is very widely accepted, and every state in the United States accepts it, and it is accepted by the expert community. There are some members of society that do not accept it, mostly based on religious belief that that kind of definition of death doesn't count for them. The only death that counts this whole body death. But that's a small subset of the American and I would say world population.
00:14:49
Speaker 2: Okay, So given that brain death is a social construct, I could understand why some people might find it harder to accept this definition.
00:15:01
Speaker 4: It's true, and in particular, if you are from a community that feels as if their views have not been respected and represented, it's understandable that there would be suspicion when people who don't look like you and don't seem to represent your views and maybe your values show up and say your loved one is dead. It's time to remove this machine from them, even though they're warm and breathing and their heart is still beating and they, as I said before, look like they're asleep. And so it's very understandable that this debate is happening at the bedside sometimes between medical experts and the patient's families. And it's I think very understandable that in a case like Jahai make Maths, the family was not fully trusting of what they were hearing from the people who were telling them that their daughter was now dead. It, I think, to me, unders wars the importance of explanation and trust and listening and trying to make clear that the values that are being expressed by the family are those that are being respected by the institutions.
00:16:15
Speaker 2: Okay, thank you. That helps me make a lot more sense of what's gone on in Jehia's case and how there can be any ambiguity around whether someone's died or not. So thanks so much for explaining that to us.
00:16:28
Speaker 4: Thanks for the good conversation today.
00:16:32
Speaker 2: We're going to take a short break. When we return, we'll hear from a physician who studied the case of Jehi macmath. He thinks his profession needs to better understand the pain and mistrust grieving families feel.
00:16:46
Speaker 5: I could understand why people might not accept the diagnosis of brain death, and also that it was a legitimate objection, and I began to think about better ways that we could talk about what brain death means.
00:16:59
Speaker 2: Playing God, godd will be right back. Jehi Macmath has two death certificates, one in California when she was declared brain dead and one in New Jersey, issued more than four years later when her organs finally gave out. Once the California hospital declared Jehai brain dead on December twelfth, twenty thirteen, she could no longer be kept on life support long term, but Jehai's family refused to let the hospital end treatment. Jehai's mother told doctors that according to her Christian faith, someone is alive as long as their heart is beating, and life support was keeping Jahi's heart beating. So Jehai's family transferred her to a care facility in New Jersey, the only state in the US that had allows people to opt out of death by brain criteria even if the hospital or doctor doesn't support it. They permit exceptions based on deeply held philosophical.
00:18:10
Speaker 3: Or religious views.
00:18:12
Speaker 2: Jehai was kept on life support for more than four years. In that time, her body even went through puberty, but eventually even the machines couldn't keep her organs functioning, so on June twenty nine, twenty eighteen, New Jersey issued Jahai's second death certificate. The fact that Jahi was issued to death certificates is just one example of the gray area created by brain death and how it can present problems.
00:18:41
Speaker 5: I think for any intensive care doctor, it's one of the things that we hopefully take the most pride in as being able to work with families who are going through truly the most painful moments of their life. You know, times they will never forget for as long as they live.
00:18:57
Speaker 2: This is Bob Drug. He's a professor of medical ethics at Harvard. He's also an intensive care physician at Boston Children's Hospital, and in that role he sometimes has to deliver the news to families that their child isn't coming back, that they're brain dead. His interest in the ethics of brain death started back when he was a medical student. He says, from the moment he first encountered the concept of brain death, he felt like it didn't quite match up to what he was seeing and how he thought about what it means to be dead.
00:19:31
Speaker 5: We were told that you do these tests, you see if the child's pupils react to light or they respond to a painful stimulus, and you go through this battery of tests, and if you do that and all the tests come out negative, the patient is dead. It didn't correspond to kind of what I'd always thought about death, you know, having had grandparents die and things like that. These patients did not look like what you would typically think of as a head person. Their hearts were beating, their skin was warm, they had pulses, their chest was going up and down with breaths, all of those things a brain dead person can do.
00:20:13
Speaker 2: He tried to talk about his reservations with his instructors and classmates, but he says they shut him down.
00:20:20
Speaker 5: I met with a very strong dogma within the profession, which is that this is simply death, as if there should be obvious to anyone who looked at the situation.
00:20:33
Speaker 2: Over time, Bob grew more convinced that it's not obvious that brain death is death. In twenty eighteen, he was interviewed for the New Yorker article about Jehi Macmath. Bob said that the disconnect between Jehi's family and her doctors was understandable. Since then, Bob has continued to study and write about the complex social issues surrounding brain death, and he often uses Jahai's case as an example of how things can go wrong. So I wanted to hear more about what he thinks the problems are with the way brain death is conceptualized.
00:21:10
Speaker 5: What brain death does is it says, if you are permanently unconscious and have permanently lost the capacity for spontaneous respiration, we consider you to be dead. You are legally dead.
00:21:26
Speaker 6: Now.
00:21:27
Speaker 5: The reason why this has largely been accepted, I think by the American public and certainly most of the Western world, has been that for many people, if they're never going to wake up again and never going to breathe on their own again, they'd go like, fine, you know, I mean, this is my view. I am as good as dead, and in fact, if my organs could help save the life of somebody else when I'm in that condition, I would like you to use them for that purpose. The thing is we haven't been transparent about that. We haven't said that that's exactly what we're doing. And I thought that the alleged quote from Johi mcmaths, physician of what is it you don't understand about death? She's dead dead dead is kind of a way of trying to overcome that lack of transparency.
00:22:14
Speaker 2: And so, if it is a social construct, would you say then that it becomes understood differently by different people who have different positions in society or experiences.
00:22:24
Speaker 5: Well, you know, I think that's actually a debatable point because there's many social constructs that we don't give people choices about. You know, the idea that you can't marry more than one person. There's nothing biological about it that says you can't, and yet we've all agreed in our society that each person can only have one legal spouse. There's all sorts of social constructs that we force on people in our society, and legitimately that's so that we can all live together peacefully. So it's absolutely it's a social construct. But I also think there's a reasonable argument for people who don't accept that social construct to at least have the opportunity to express that view and perhaps even have the right to reject that diagnosis if it's not a social construct that they agree with.
00:23:15
Speaker 2: And so would you say it is accurates to say in Jahi's case that the family were right in thinking that she was still alive in terms of their understanding of the word death, but then also simultaneously the doctors were right to say she was dead.
00:23:34
Speaker 5: I'm a little bit reluctant to say one was right or they both were right. I think the doctors were wrong in dismissing the question why is she dead? Were they behaving in the way that they had been trained, the way that I had been trained? Yes, they were, but that doesn't make it right.
00:23:53
Speaker 2: Do you feel that there's an alternative framework to brain death that you think might be more ethical or less ambiguit Yes.
00:24:01
Speaker 5: My preferred choice is to define death the way that it has actually been diagnosed for the last forty years, which is, if we determine that you're permanently unconscious and have permanently lost the capacity for spontaneous respiration, you are legally dead, and that allows patients to donate organs and organs to be procured without violating the dead donor rule. But I also believe that we should allow patients to opt out of that diagnosis, since it's not the same as biological death, and many people either on the basis of their religious beliefs or personal convictions. Don't believe that you're really dead until after you're biologically dead. People who felt strongly about it could document that in their medical record at any point in their life and it would be respected. But I think in most cases it does come down to the family saying, for example, we're Orthodox Jewish and it's against our religion, or we're Buddhist and it's against our religion, or I just know that Uncle Joe would never agree with being diagnosed as dead this way, and I think all of those ways would count.
00:25:09
Speaker 2: So could you talk a bit about what problems that creates more broadly.
00:25:15
Speaker 5: Well, more broadly, we do have a shortage of ICU beds and doctors and nurses, and you want those resources to be devoted towards people who are going to recover, go out of the ICU and go on to live a life, and in brain death, that's not the case. That diagnosis really kind of solves a rationing problem in the ICU. And one of the questions going forward is that if patients have a right to refuse to accept the diagnosis of brain death, does that mean that our ICUs are suddenly going to become overflowing, and I think to a certain extent that's an unknown question. But we do have the experience from New Jersey because patients have been able to opt out of the diagnosis in New Jersey now for over thirty years. To my knowledge, I see you, utilization really has been just pretty much normal in New Jersey.
00:26:07
Speaker 2: And with your preferred way, would that framework have helped in the Jehi Macmath case.
00:26:15
Speaker 5: Yes, it would have. I think McMath's family would have been told that they did not have to accept the determination of death by neurological criteria.
00:26:25
Speaker 2: So could you tell us what experts like bioethesis and neurologists are doing to attempt to update the brain death definition.
00:26:34
Speaker 5: So the Johih Macmath case and many of the others like it have led to many lawsuits of families objecting to the determination of death by neurological criteria, and out of that there was a movement to think about revising the Uniform Determination of Death Act that had been adopted in nineteen eighty one. The group that would do that is called the Uniform Law Commission. So that committee has now been meeting for over two years, and there are some who say that the current definition has worked well enough, others who like myself, believe that the law needs to be more transparent than it is. The other big aspect that's under discussion is whether patients or families should be allowed to opt out of the diagnosis.
00:27:23
Speaker 2: And if there was to be a kind of a major change in the definition of death, do you think that that it would have an impact on organ donation.
00:27:32
Speaker 5: One of the concerns of that line of reasoning would be that if the Uniform Law Commission were to go in that direction, that there could be states who would say that brain death is not actually a way of diagnosing death, it's only a way of diagnosing a severe brain injury, and that it would be wrong to remove life support from these patients or to procure their organs for transplantation. One of the concerns that people might have then is that some states could in turn a revised Uniform Determination of Death Act in a way that would make it illegal or impermissible to procure organs from patients who are declared brain dead, and that could then have ripple effects in terms of the availability of transplantable organs. I mean, it would be a frigging nightmare and I'm hoping that both the Uniform Law Commission and our society can come to the sorts of agreements that will allow what I believe to be reasonable decisions by patients and families to donate their organs, and for us to be able to use those organs to save the lives of others.
00:28:38
Speaker 2: Going back to Jehi's case, there was so much mistrust between Jehi's family and her doctor's, understandably, and it seems to me that the greater transparency that you're pushing for could help repair some of the distrust between doctors and patients, specifically when it comes to discussing concepts like brain death. Is that fair to say?
00:28:57
Speaker 5: I think you know, trust is easy to lose but very hard to regain. And we've seen, you know, as we've sadly gone through the pandemic and the lack of trust the public has in the medical profession about the efficacy of vaccines and things like this. Brain death just adds to that list. But there's never ever been a recorded case of somebody who's been correctly diagnosed as braindead who's ever recovered consciousness.
00:29:22
Speaker 2: Well, thank you, Bob so much for giving me the time to ask you all these questions. It's been really fascinating.
00:29:29
Speaker 5: Well actually very grateful that you're talking about these issues. They're very interesting to me obviously, but hopefully they're interesting to your listeners. And I also think they're like really important questions for us to be thinking about and grappling with.
00:29:42
Speaker 2: We've heard a lot in this episode about how complicated brain death really is and how in the end, it's really a social construct. Bioethicist Yolanda Wilson says, if the medical establishment wants people to accept a social construct like brain death, then they have to wor kada to un not trust.
00:30:02
Speaker 1: The minute of highs. Grandmother said, hey, something is going wrong. The position could have come in and wielder back to surgery right away, and the outcome still may have been what it was. But I think it adds unnecessary grief and burden and distress to the family when they know that they have reported things and that they have put their trust in you, and to not have that respected and then to demand that the family trust and believe what you're reporting to them after the fact takes a level of audacity that had I right, I don't have access to that level of audacity in My Life.
00:30:51
Speaker 2: Landa says trust needs to be as stibblished from the very beginning, starting with something as basic as how physicians communicate with patients.
00:31:00
Speaker 1: At every level. There has to be a kind of basic human decency and respect with which patients are greeted from the initial entry point and treated throughout. This idea of just kind of basic act of listening. Right, those kinds of things can establish trust. And I think doctors in particular are really bad with thinking that they know things. And certainly there are certain expertise, there's absolute expertise that one gains in medical school. But medical knowledge isn't knowledge in all forms, across all domains, for all time.
00:31:46
Speaker 2: Next time, on playing God, a thirty nine year old woman is rushed to hospital in need of urgent medical treatment. Her doctors tell her family that they know how to save her life, but according to that policies, they won't treat her, not for six months. So what's behind the so called six month rule for liver transplants and how is it ethical? We'll hear from a Johns Hopkins transplant surgeon who says that this widespread practice is based on stigma, not science, and he is not standing for it.
00:32:22
Speaker 6: Transplant centers. As they see that good results are possible, We'll go for it, and they'll they'll take a chance and do the transplant, and they'll realize, holy cow, we almost let that wonderful person die. Thank God we made the right decision and gave him a second chance.
00:32:45
Speaker 2: Big thanks to our guests in this episode, Yolanda Wilson and Bob Drug. Playing God is a co production of Pushkin Industries and the Johns Hopkins Berman Institute of Bioethics. Emily Bourne is our lead producer. This episode was also produced by Sophie Crane and Lucy Sullivan.
00:33:07
Speaker 3: Our editors are.
00:33:08
Speaker 2: Karen Chakerjee and Kate Parkinson Morgan Deem. Music and mixing by Echo Mountain Engineering support from Sarah Bruguerre and Amanda Kawan. Show art by Sean Krney, fact checking by David jar and Arthur Gompertz. Our executive producer is Justine Lang at the Johns Hopkins Berman Institute of Bioethics. Our executive producers are Jeffrey Kahan and Anna Mastriani, working with Amelia Hood. Funding provided by the Greenwall Foundation. I'm Laurena Rura Hutchinson. Come back next week for more Playing God. Has this show inspired you? Are you interested in studying bioethics, Perhaps you want to become one shaping this field. We have a Master of Bioethics program at the Johns Hopkins Berman Institute of Bioethics. To find out more, visit Bioethics dot Jhu dot edu. Forward slash MBE scholarships are available