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