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Speaker 1: Jehi Macmath entered the hospital December ninth, twenty thirteen. By

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Speaker 1: December twelfth, the medical staff at Children's Hospital declared that

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Speaker 1: Jehi was, in fact brain did. Already, Jehi's family did

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Speaker 1: not feel that Jehi got the kind of care that

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Speaker 1: she should have gotten, and so to come before the

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Speaker 1: family now and say, oh, yeah, her heart still seems

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Speaker 1: to be beating, but no, no, no, she's actually did

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Speaker 1: I think that that was always going to be a

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Speaker 1: hard pill to swallow.

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Speaker 2: Yilanda Wilson is talking about the case of Jehi Macmath,

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Speaker 2: a thirteen year old girl from Oakland, California. Jahai's story

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Speaker 2: caught her attention soon after it became national news. Ylanda

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Speaker 2: is a professor of health Catholics at Saint Lewis University.

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Speaker 2: She could sense right away that Jehi's case was incredibly difficult.

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Speaker 1: Jehi McMath's family was understandably distraught at the possible loss

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Speaker 1: of their child. They did not accept that Jahai was

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Speaker 1: in fact brain did.

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Speaker 2: Jehai originally came to the hospital for a routine surgery,

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Speaker 2: and overall, her family says she was friendly and happy

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Speaker 2: and in good health, but she had issues with snoring,

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Speaker 2: that caused her trouble sleeping, so Jahai's doctor recommended that

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Speaker 2: she get a tonsilecto.

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Speaker 1: Me even the slightly more complex procedure of the tonsils

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Speaker 1: and adenoids, I think we think of that as fairly

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Speaker 1: routine and not something that you wouldn't be able to

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Speaker 1: come home from.

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Speaker 2: In the recovery room, it seemed like the procedure had

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Speaker 2: gone just fine. Nurses gave Jahai a popsicle to see

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Speaker 2: her throat, but just an hour after Jahai came to

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Speaker 2: she started to spit up after a ton select to me,

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Speaker 2: it's normal to have some bleeding, but Jehai seemed to

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Speaker 2: be bleeding a lot, so Jahai's family alerted the nurses.

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Speaker 2: The nurses wrote down the family's concerns in Jehai's chart,

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Speaker 2: but nothing further happened. Jahai's grandmother, who had been a

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Speaker 2: nurse for thirty years at a local surgery clinic, told

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Speaker 2: anyone who had listened that Jahai's bleeding seemed abnormal, but

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Speaker 2: the physicians decided no intervention was necessary. Jahai's family said

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Speaker 2: they tried for hours to get anyone at the hospital

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Speaker 2: to take action.

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Speaker 1: Jehai's mother said no one was listening to us, and

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Speaker 1: I can't prove it, but I really feel in my

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Speaker 1: heart that if Jehi was a little white girl, I

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Speaker 1: feel that we would have gotten a little bit more

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Speaker 1: help and attention.

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Speaker 2: Jehai and her family are black, and it's worth noting

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Speaker 2: that there is a long history of racism against black

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Speaker 2: people in healthcare, so there is a much larger con

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Speaker 2: text behind her mother's distrust. Four and a half hours

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Speaker 2: after Jahi's bleeding started, her grandmother noticed a sharp drop

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Speaker 2: off in her blood, oxygen levels, and heart rate. Jehai's

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Speaker 2: grandmother alerted the nurses, and finally they listened. Several doctors

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Speaker 2: and nurses rushed into the room, but by then it

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Speaker 2: was too late. Jahai's surgery sight had hemorrhaged.

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Speaker 1: Due to the blood loss. Jehi went into cardiac arrest

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Speaker 1: and her brain was deprived of oxygen, and so she

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Speaker 1: was brain died. The medical staff encouraged the family to

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Speaker 1: withdraw any kind of continuing care since she was brain deed,

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Speaker 1: and to donate her organs.

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Speaker 2: That's when something happened to turn Jahi's case from one

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Speaker 2: family's tragedy into a story that made national headlines for

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Speaker 2: years to come. Jehai's family told the hospital no, they

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Speaker 2: did not accept the Jahai was dead, and they refused

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Speaker 2: to let the doctors take Jahai off life support.

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Speaker 1: The family, for, you know, for lots of reasons that

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Speaker 1: I think may be quite reasonable given what they experienced,

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Speaker 1: were very concerned, maybe that she was declared brain did

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Speaker 1: to hastily.

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Speaker 2: For days, Jehai's family held their stance. Meanwhile, the hospital

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Speaker 2: grew impatient. The twenty eighteen New Yorker article about the

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Speaker 2: case described a conversation between the family and one of

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Speaker 2: the doctors. According to the article, the doctor pounded his

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Speaker 2: fist on a table and said to Jahi's family, quote,

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Speaker 2: what is it that you don't understand? She's dead? Dead

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Speaker 2: dead end quote. The doctor denies saying this, but even so,

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Speaker 2: Yolanda says, the disconnect was never as simple as a misunderstanding.

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Speaker 1: I think it's very easy to just dismiss patients or

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Speaker 1: dismiss their families as difficult or ignorant or ridiculous. But

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Speaker 1: when you're coming from a place of feeling that you

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Speaker 1: were not heard or cared for properly, I think it's

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Speaker 1: quite rational to be upset or to have additional questions

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Speaker 1: about what you're being told.

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Speaker 3: I'm Laurena Rora Hutchinson.

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Speaker 2: I'm the director of the Ideas Lab at the Johns

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Speaker 2: Hopkins Berman Institute of Bioethics. In today's show, Brain Death,

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Speaker 2: how did this concept reshape our very definition of death?

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Speaker 2: We explore why some bioethicists are calling for even more

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Speaker 2: nuance as we rethink the line between life and death.

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Speaker 2: From Pushkin Industries and the Johns Hopkins Berman Institute of Bioethics,

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Speaker 2: this is playing God.

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Speaker 3: To high.

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Speaker 2: Story is so sad. There was so many factors working

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Speaker 2: against her and her family in the course of what

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Speaker 2: was supposed to be a pretty routine procedure. We'll return

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Speaker 2: to Jahia's story later in this episode, but first, there's

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Speaker 2: something about it that I didn't understand. How is it

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Speaker 2: that doctors and family members can disagree over what it

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Speaker 2: means to die? And how exactly did we arrive at

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Speaker 2: this concept of brain death? To find out, I once

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Speaker 2: again reached out to my Berman Institute colleague, Jeffrey Kahn.

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Speaker 2: So thanks for coming on today, Jeff to discuss this

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Speaker 2: tremendously difficult and tragic story.

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Speaker 4: Thank you for having me on again. Lauren and A

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Speaker 4: very tragic and difficult story and really challenging to imagine

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Speaker 4: losing your child after what seems to be a routine

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Speaker 4: procedure in hearing that she has died. So it's a

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Speaker 4: really challenging story and raises some very difficult issues as

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Speaker 4: we'll discuss us.

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Speaker 3: Yeah, for sure, so, Jeff.

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Speaker 2: In the last episode we talked about bioethics as it

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Speaker 2: relates to life and life saving technology, but not death,

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Speaker 2: and so this is a bit of a change of

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Speaker 2: gears for us, isn't it.

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Speaker 4: It is a little bit, But without the technologies that

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Speaker 4: allow people to be kept alive, we would not need

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Speaker 4: to be talking about what it means to die. So

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Speaker 4: there's a very clear relationship between these new life saving

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Speaker 4: technologies and what now is required for us to grapple with,

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Speaker 4: which is new ways of understanding what it means to

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Speaker 4: be dead.

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Speaker 2: I'm not really used to thinking about death as if

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Speaker 2: it's ambiguous. I always thought that it was the you're

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Speaker 2: either dead or you're not, and I.

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Speaker 4: Think most of us feel that way too, And for millennia,

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Speaker 4: really for all of human history, it was very clear

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Speaker 4: when people died, they stopped breathing, their hearts up beating

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Speaker 4: and they turned blue, and it was obvious that they

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Speaker 4: were dead. With the advent of technologies like ventilators, people's

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Speaker 4: bodies could be kept alive and it seemed indefinitely, even

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Speaker 4: though it seemed like their brains no longer functioning and

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Speaker 4: the person, the people that were represented by that body

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Speaker 4: were no longer there. And so technology has demanded us

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Speaker 4: to grapple with what it means for a body to

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Speaker 4: be kept alive when maybe the person is no longer

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Speaker 4: with us.

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Speaker 2: So you said that it's a newer way to talk

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Speaker 2: about death. So where does this concept come from then.

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Speaker 4: Well, it really was spurred by the technologies that allowed

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Speaker 4: people to be kept alive when that wasn't possible before.

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Speaker 4: So when people were unconscious after an accident or a

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Speaker 4: stroke or some kind of an incident that made it

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Speaker 4: necessary for a machine to help them breathe. Before those

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Speaker 4: machines called ventilators were available, they would have just died.

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Speaker 4: But with the advent of a mechanical ventilation, people could

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Speaker 4: be kept alive hopefully to recover. They could be treated,

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Speaker 4: and they would recover and breathe on their own and

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Speaker 4: maybe eventually leave the hospital. Ventilators brought with it some

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Speaker 4: very clear questions about when it was time to turn

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Speaker 4: off the ventilator and allow the body to die. And

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Speaker 4: so a Harvard committee was convened to actually craft the

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Speaker 4: first definitions of what became known as neurological death, and

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Speaker 4: sometimes in common language we call it brain death. So

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Speaker 4: when a person is declared dead not because their body

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Speaker 4: has died, but because their brain has stopped functioning in

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Speaker 4: very clearly defined ways, So their brain has died even

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Speaker 4: if their body has not.

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Speaker 3: So was Jahi on a ventilator.

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Speaker 4: She was maintained on a ventilator for some period of time,

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Speaker 4: raising exactly the kinds of questions that came up going

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Speaker 4: back to the nineteen sixties, and really importantly to say,

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Speaker 4: those issues are with us every day and hospitals around

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Speaker 4: the world. So these issues started in the nineteen sixties

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Speaker 4: and continue with us today.

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Speaker 2: So can you help me understand what brain death is exactly?

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Speaker 2: So how is it different to a coma? Is being

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Speaker 2: brain dead sort of like a highly technical diagnosis for

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Speaker 2: a person who'll never wake up again.

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Speaker 4: It's a lot like what you're describing. It is a

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Speaker 4: pretty technical definition. It's different than coma, and that people

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Speaker 4: can wake up from comas, certain aspects of brain function

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Speaker 4: remain in coma that are gone. In the case of

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Speaker 4: neurological death or brain death, certain important parts of brain

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Speaker 4: function have stopped and won't come back. So that's a

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Speaker 4: really important aspect of brain death. So there's been a

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Speaker 4: determination by neurologists that those brain functions that allow us

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Speaker 4: to be the people we think of as persons are

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Speaker 4: gone and will not return. The challenges. People lying in

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Speaker 4: bed on a ventilator who are diagnosed as being in

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Speaker 4: a coma look very much like somebody who's asleep, look

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Speaker 4: very much like someone who can be declared brain dead,

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Speaker 4: and so that's why it's really confusing for families to

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Speaker 4: distinguish somebody being asleep from somebody being brain dead or

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Speaker 4: in a coma, And so it relies on assessment by experts,

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Speaker 4: and so that's I think part of why this is

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Speaker 4: a really difficult concept both to understand just as interested people,

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Speaker 4: but also if you're a family member in a position

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Speaker 4: that's being told your loved one is not going to

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Speaker 4: wake up and it's time to remove life support and

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Speaker 4: to declare them dead.

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Speaker 2: Yeah, so I could see how it's confusing So would

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Speaker 2: you say that the brain death definition was meant to

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Speaker 2: provide a kind of humane release for someone who's being

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Speaker 2: kept alive who might not want to under these circumstances,

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Speaker 2: and also for those families who won't get the love

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Speaker 2: on back and they need some kind of sense of closure.

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Speaker 4: Yes, And I think it was meant to avoid what

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Speaker 4: felt like a very unacceptable outcome where a patient's body

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Speaker 4: could be kept alive for a very long time with

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Speaker 4: no possibility of their ever becoming aware of their surroundings. Again,

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Speaker 4: that they would never wake up, and that seems like

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Speaker 4: something that almost nobody would want to have happened to them.

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Speaker 4: And so it created a way for us to say,

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Speaker 4: this person is dead, just as if their heart stopped

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Speaker 4: beating and they stop breathing. This machine is what's keeping

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Speaker 4: them alive, but otherwise they're dead.

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Speaker 3: And is not the only reason.

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Speaker 4: Well, it turns out that there's a kind of secondary

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Speaker 4: effect of maintaining people on life support after they have

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Speaker 4: been declared brain dead. It makes it possible for their

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Speaker 4: organs to be donated for transplant in a way that

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Speaker 4: would not be possible if we waited for whole body death.

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Speaker 4: So when a person's heart stops speeding and stop breathing,

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Speaker 4: and they're declared that way, their organs are no longer

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Speaker 4: usable for transplant. But if an individual is declared brain dead,

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Speaker 4: their body can be maintained on a ventilator and their

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Speaker 4: organs can be collected and transplanted to numerous other people

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Speaker 4: to help save their lives. They go hand in hand.

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Speaker 4: It isn't that brain death was created as a concept

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Speaker 4: to allow organ donation and organ transplant, but they're very

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Speaker 4: closely related.

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Speaker 2: But that's not the motivation as to why doctors declare

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Speaker 2: people brain dead.

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Speaker 4: Right, And the decision to donate organs on the part

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Speaker 4: of the family is intentionally separated from the decision about

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Speaker 4: removing life support as a way of making sure that

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Speaker 4: the decision to declare somebody dead is not motivated by

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Speaker 4: the opportunity to collect their organs.

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Speaker 2: Okay, that makes sense. So from what you've said so far,

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Speaker 2: it sounds to me like you're saying that brain death

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Speaker 2: was socially constructed and that it's something that was agreed

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Speaker 2: upon by experts for a reason.

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Speaker 4: I think that's exactly the right way to characterize it.

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Speaker 4: If we have a way to keep a body alive

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Speaker 4: by this life support technology. We do need a societally

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Speaker 4: agreed upon social construct of what it means to die

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Speaker 4: by this other set of criteria, by neurological criteria, by

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Speaker 4: brain criteria. And so it is very widely accepted, and

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Speaker 4: every state in the United States accepts it, and it

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Speaker 4: is accepted by the expert community. There are some members

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Speaker 4: of society that do not accept it, mostly based on

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Speaker 4: religious belief that that kind of definition of death doesn't

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Speaker 4: count for them. The only death that counts this whole

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Speaker 4: body death. But that's a small subset of the American

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Speaker 4: and I would say world population.

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Speaker 2: Okay, So given that brain death is a social construct,

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Speaker 2: I could understand why some people might find it harder

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Speaker 2: to accept this definition.

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Speaker 4: It's true, and in particular, if you are from a

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Speaker 4: community that feels as if their views have not been

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Speaker 4: respected and represented, it's understandable that there would be suspicion

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Speaker 4: when people who don't look like you and don't seem

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Speaker 4: to represent your views and maybe your values show up

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Speaker 4: and say your loved one is dead. It's time to

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Speaker 4: remove this machine from them, even though they're warm and

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Speaker 4: breathing and their heart is still beating and they, as

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Speaker 4: I said before, look like they're asleep. And so it's

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Speaker 4: very understandable that this debate is happening at the bedside

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Speaker 4: sometimes between medical experts and the patient's families. And it's

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Speaker 4: I think very understandable that in a case like Jahai

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Speaker 4: make Maths, the family was not fully trusting of what

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Speaker 4: they were hearing from the people who were telling them

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Speaker 4: that their daughter was now dead. It, I think, to me,

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Speaker 4: unders wars the importance of explanation and trust and listening

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Speaker 4: and trying to make clear that the values that are

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Speaker 4: being expressed by the family are those that are being

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Speaker 4: respected by the institutions.

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Speaker 2: Okay, thank you. That helps me make a lot more

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Speaker 2: sense of what's gone on in Jehia's case and how

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Speaker 2: there can be any ambiguity around whether someone's died or not.

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Speaker 2: So thanks so much for explaining that to us.

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Speaker 4: Thanks for the good conversation today.

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Speaker 2: We're going to take a short break. When we return,

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Speaker 2: we'll hear from a physician who studied the case of

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Speaker 2: Jehi macmath. He thinks his profession needs to better understand

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Speaker 2: the pain and mistrust grieving families feel.

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Speaker 5: I could understand why people might not accept the diagnosis

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Speaker 5: of brain death, and also that it was a legitimate objection,

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Speaker 5: and I began to think about better ways that we

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Speaker 5: could talk about what brain death means.

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Speaker 2: Playing God, godd will be right back. Jehi Macmath has

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Speaker 2: two death certificates, one in California when she was declared

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Speaker 2: brain dead and one in New Jersey, issued more than

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Speaker 2: four years later when her organs finally gave out. Once

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Speaker 2: the California hospital declared Jehai brain dead on December twelfth,

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Speaker 2: twenty thirteen, she could no longer be kept on life

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Speaker 2: support long term, but Jehai's family refused to let the

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Speaker 2: hospital end treatment. Jehai's mother told doctors that according to

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Speaker 2: her Christian faith, someone is alive as long as their

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Speaker 2: heart is beating, and life support was keeping Jahi's heart beating.

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Speaker 2: So Jehai's family transferred her to a care facility in

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Speaker 2: New Jersey, the only state in the US that had

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Speaker 2: allows people to opt out of death by brain criteria

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Speaker 2: even if the hospital or doctor doesn't support it. They

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Speaker 2: permit exceptions based on deeply held philosophical.

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Speaker 3: Or religious views.

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Speaker 2: Jehai was kept on life support for more than four years.

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Speaker 2: In that time, her body even went through puberty, but

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Speaker 2: eventually even the machines couldn't keep her organs functioning, so

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Speaker 2: on June twenty nine, twenty eighteen, New Jersey issued Jahai's

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Speaker 2: second death certificate. The fact that Jahi was issued to

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Speaker 2: death certificates is just one example of the gray area

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Speaker 2: created by brain death and how it can present problems.

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Speaker 5: I think for any intensive care doctor, it's one of

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Speaker 5: the things that we hopefully take the most pride in

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Speaker 5: as being able to work with families who are going

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Speaker 5: through truly the most painful moments of their life. You know,

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Speaker 5: times they will never forget for as long as they live.

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Speaker 2: This is Bob Drug. He's a professor of medical ethics

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Speaker 2: at Harvard. He's also an intensive care physician at Boston

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Speaker 2: Children's Hospital, and in that role he sometimes has to

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Speaker 2: deliver the news to families that their child isn't coming back,

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Speaker 2: that they're brain dead. His interest in the ethics of

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Speaker 2: brain death started back when he was a medical student.

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Speaker 2: He says, from the moment he first encountered the concept

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Speaker 2: of brain death, he felt like it didn't quite match

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Speaker 2: up to what he was seeing and how he thought

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Speaker 2: about what it means to be dead.

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Speaker 5: We were told that you do these tests, you see

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Speaker 5: if the child's pupils react to light or they respond

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Speaker 5: to a painful stimulus, and you go through this battery

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Speaker 5: of tests, and if you do that and all the

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Speaker 5: tests come out negative, the patient is dead. It didn't

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Speaker 5: correspond to kind of what I'd always thought about death,

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Speaker 5: you know, having had grandparents die and things like that.

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Speaker 5: These patients did not look like what you would typically

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Speaker 5: think of as a head person. Their hearts were beating,

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Speaker 5: their skin was warm, they had pulses, their chest was

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Speaker 5: going up and down with breaths, all of those things

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Speaker 5: a brain dead person can do.

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Speaker 2: He tried to talk about his reservations with his instructors

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Speaker 2: and classmates, but he says they shut him down.

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Speaker 5: I met with a very strong dogma within the profession,

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Speaker 5: which is that this is simply death, as if there

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Speaker 5: should be obvious to anyone who looked at the situation.

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Speaker 2: Over time, Bob grew more convinced that it's not obvious

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Speaker 2: that brain death is death. In twenty eighteen, he was

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Speaker 2: interviewed for the New Yorker article about Jehi Macmath. Bob

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Speaker 2: said that the disconnect between Jehi's family and her doctors

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Speaker 2: was understandable. Since then, Bob has continued to study and

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Speaker 2: write about the complex social issues surrounding brain death, and

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Speaker 2: he often uses Jahai's case as an example of how

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Speaker 2: things can go wrong. So I wanted to hear more

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Speaker 2: about what he thinks the problems are with the way

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Speaker 2: brain death is conceptualized.

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Speaker 5: What brain death does is it says, if you are

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Speaker 5: permanently unconscious and have permanently lost the capacity for spontaneous respiration,

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Speaker 5: we consider you to be dead. You are legally dead.

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Speaker 6: Now.

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Speaker 5: The reason why this has largely been accepted, I think

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Speaker 5: by the American public and certainly most of the Western world,

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Speaker 5: has been that for many people, if they're never going

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Speaker 5: to wake up again and never going to breathe on

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Speaker 5: their own again, they'd go like, fine, you know, I mean,

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Speaker 5: this is my view. I am as good as dead,

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Speaker 5: and in fact, if my organs could help save the

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Speaker 5: life of somebody else when I'm in that condition, I

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Speaker 5: would like you to use them for that purpose. The

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Speaker 5: thing is we haven't been transparent about that. We haven't

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Speaker 5: said that that's exactly what we're doing. And I thought

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Speaker 5: that the alleged quote from Johi mcmaths, physician of what

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Speaker 5: is it you don't understand about death? She's dead dead

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Speaker 5: dead is kind of a way of trying to overcome

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Speaker 5: that lack of transparency.

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Speaker 2: And so, if it is a social construct, would you

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Speaker 2: say then that it becomes understood differently by different people

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Speaker 2: who have different positions in society or experiences.

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Speaker 5: Well, you know, I think that's actually a debatable point

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Speaker 5: because there's many social constructs that we don't give people

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Speaker 5: choices about. You know, the idea that you can't marry

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Speaker 5: more than one person. There's nothing biological about it that

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Speaker 5: says you can't, and yet we've all agreed in our

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Speaker 5: society that each person can only have one legal spouse.

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Speaker 5: There's all sorts of social constructs that we force on

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Speaker 5: people in our society, and legitimately that's so that we

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Speaker 5: can all live together peacefully. So it's absolutely it's a

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Speaker 5: social construct. But I also think there's a reasonable argument

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Speaker 5: for people who don't accept that social construct to at

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Speaker 5: least have the opportunity to express that view and perhaps

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Speaker 5: even have the right to reject that diagnosis if it's

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Speaker 5: not a social construct that they agree with.

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Speaker 2: And so would you say it is accurates to say

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Speaker 2: in Jahi's case that the family were right in thinking

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Speaker 2: that she was still alive in terms of their understanding

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Speaker 2: of the word death, but then also simultaneously the doctors

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Speaker 2: were right to say she was dead.

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Speaker 5: I'm a little bit reluctant to say one was right

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Speaker 5: or they both were right. I think the doctors were

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Speaker 5: wrong in dismissing the question why is she dead? Were

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Speaker 5: they behaving in the way that they had been trained,

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Speaker 5: the way that I had been trained? Yes, they were,

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Speaker 5: but that doesn't make it right.

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Speaker 2: Do you feel that there's an alternative framework to brain

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Speaker 2: death that you think might be more ethical or less

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Speaker 2: ambiguit Yes.

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Speaker 5: My preferred choice is to define death the way that

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Speaker 5: it has actually been diagnosed for the last forty years,

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Speaker 5: which is, if we determine that you're permanently unconscious and

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Speaker 5: have permanently lost the capacity for spontaneous respiration, you are

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Speaker 5: legally dead, and that allows patients to donate organs and

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Speaker 5: organs to be procured without violating the dead donor rule.

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Speaker 5: But I also believe that we should allow patients to

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Speaker 5: opt out of that diagnosis, since it's not the same

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Speaker 5: as biological death, and many people either on the basis

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Speaker 5: of their religious beliefs or personal convictions. Don't believe that

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Speaker 5: you're really dead until after you're biologically dead. People who

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Speaker 5: felt strongly about it could document that in their medical

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Speaker 5: record at any point in their life and it would

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Speaker 5: be respected. But I think in most cases it does

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Speaker 5: come down to the family saying, for example, we're Orthodox

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Speaker 5: Jewish and it's against our religion, or we're Buddhist and

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Speaker 5: it's against our religion, or I just know that Uncle

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Speaker 5: Joe would never agree with being diagnosed as dead this way,

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Speaker 5: and I think all of those ways would count.

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Speaker 2: So could you talk a bit about what problems that

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Speaker 2: creates more broadly.

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Speaker 5: Well, more broadly, we do have a shortage of ICU

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Speaker 5: beds and doctors and nurses, and you want those resources

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Speaker 5: to be devoted towards people who are going to recover,

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Speaker 5: go out of the ICU and go on to live

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Speaker 5: a life, and in brain death, that's not the case.

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Speaker 5: That diagnosis really kind of solves a rationing problem in

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Speaker 5: the ICU. And one of the questions going forward is

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Speaker 5: that if patients have a right to refuse to accept

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Speaker 5: the diagnosis of brain death, does that mean that our

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Speaker 5: ICUs are suddenly going to become overflowing, and I think

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Speaker 5: to a certain extent that's an unknown question. But we

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Speaker 5: do have the experience from New Jersey because patients have

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Speaker 5: been able to opt out of the diagnosis in New

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Speaker 5: Jersey now for over thirty years. To my knowledge, I

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Speaker 5: see you, utilization really has been just pretty much normal

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Speaker 5: in New Jersey.

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Speaker 2: And with your preferred way, would that framework have helped

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Speaker 2: in the Jehi Macmath case.

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Speaker 5: Yes, it would have. I think McMath's family would have

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Speaker 5: been told that they did not have to accept the

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Speaker 5: determination of death by neurological criteria.

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Speaker 2: So could you tell us what experts like bioethesis and

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Speaker 2: neurologists are doing to attempt to update the brain death definition.

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Speaker 5: So the Johih Macmath case and many of the others

439
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Speaker 5: like it have led to many lawsuits of families objecting

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Speaker 5: to the determination of death by neurological criteria, and out

441
00:26:46,760 --> 00:26:51,720
Speaker 5: of that there was a movement to think about revising

442
00:26:52,160 --> 00:26:54,640
Speaker 5: the Uniform Determination of Death Act that had been adopted

443
00:26:54,640 --> 00:26:57,960
Speaker 5: in nineteen eighty one. The group that would do that

444
00:26:58,080 --> 00:27:01,080
Speaker 5: is called the Uniform Law Commission. So that committee has

445
00:27:01,080 --> 00:27:04,280
Speaker 5: now been meeting for over two years, and there are

446
00:27:04,320 --> 00:27:08,640
Speaker 5: some who say that the current definition has worked well enough,

447
00:27:09,240 --> 00:27:12,639
Speaker 5: others who like myself, believe that the law needs to

448
00:27:12,640 --> 00:27:16,320
Speaker 5: be more transparent than it is. The other big aspect

449
00:27:16,480 --> 00:27:20,560
Speaker 5: that's under discussion is whether patients or families should be

450
00:27:20,560 --> 00:27:22,640
Speaker 5: allowed to opt out of the diagnosis.

451
00:27:23,160 --> 00:27:25,840
Speaker 2: And if there was to be a kind of a

452
00:27:25,960 --> 00:27:28,600
Speaker 2: major change in the definition of death, do you think

453
00:27:28,600 --> 00:27:31,359
Speaker 2: that that it would have an impact on organ donation.

454
00:27:32,680 --> 00:27:36,040
Speaker 5: One of the concerns of that line of reasoning would

455
00:27:36,119 --> 00:27:38,919
Speaker 5: be that if the Uniform Law Commission were to go

456
00:27:38,960 --> 00:27:42,480
Speaker 5: in that direction, that there could be states who would

457
00:27:42,480 --> 00:27:44,879
Speaker 5: say that brain death is not actually a way of

458
00:27:45,080 --> 00:27:47,680
Speaker 5: diagnosing death, it's only a way of diagnosing a severe

459
00:27:47,760 --> 00:27:51,399
Speaker 5: brain injury, and that it would be wrong to remove

460
00:27:51,480 --> 00:27:53,840
Speaker 5: life support from these patients or to procure their organs

461
00:27:53,880 --> 00:27:56,800
Speaker 5: for transplantation. One of the concerns that people might have

462
00:27:56,920 --> 00:28:00,960
Speaker 5: then is that some states could in turn a revised

463
00:28:01,520 --> 00:28:05,280
Speaker 5: Uniform Determination of Death Act in a way that would

464
00:28:05,280 --> 00:28:10,400
Speaker 5: make it illegal or impermissible to procure organs from patients

465
00:28:10,440 --> 00:28:14,199
Speaker 5: who are declared brain dead, and that could then have

466
00:28:14,320 --> 00:28:18,000
Speaker 5: ripple effects in terms of the availability of transplantable organs.

467
00:28:18,440 --> 00:28:21,600
Speaker 5: I mean, it would be a frigging nightmare and I'm

468
00:28:21,600 --> 00:28:25,719
Speaker 5: hoping that both the Uniform Law Commission and our society

469
00:28:25,920 --> 00:28:29,600
Speaker 5: can come to the sorts of agreements that will allow

470
00:28:29,920 --> 00:28:33,080
Speaker 5: what I believe to be reasonable decisions by patients and

471
00:28:33,119 --> 00:28:35,280
Speaker 5: families to donate their organs, and for us to be

472
00:28:35,320 --> 00:28:37,560
Speaker 5: able to use those organs to save the lives of others.

473
00:28:38,160 --> 00:28:40,880
Speaker 2: Going back to Jehi's case, there was so much mistrust

474
00:28:40,880 --> 00:28:44,840
Speaker 2: between Jehi's family and her doctor's, understandably, and it seems

475
00:28:44,840 --> 00:28:47,480
Speaker 2: to me that the greater transparency that you're pushing for

476
00:28:47,560 --> 00:28:51,080
Speaker 2: could help repair some of the distrust between doctors and patients,

477
00:28:51,760 --> 00:28:54,760
Speaker 2: specifically when it comes to discussing concepts like brain death.

478
00:28:55,200 --> 00:28:56,160
Speaker 2: Is that fair to say?

479
00:28:57,600 --> 00:29:00,200
Speaker 5: I think you know, trust is easy to lose but

480
00:29:00,480 --> 00:29:03,920
Speaker 5: very hard to regain. And we've seen, you know, as

481
00:29:03,920 --> 00:29:06,520
Speaker 5: we've sadly gone through the pandemic and the lack of

482
00:29:06,560 --> 00:29:09,320
Speaker 5: trust the public has in the medical profession about the

483
00:29:09,360 --> 00:29:12,760
Speaker 5: efficacy of vaccines and things like this. Brain death just

484
00:29:12,880 --> 00:29:16,360
Speaker 5: adds to that list. But there's never ever been a

485
00:29:16,400 --> 00:29:19,520
Speaker 5: recorded case of somebody who's been correctly diagnosed as braindead

486
00:29:19,680 --> 00:29:21,600
Speaker 5: who's ever recovered consciousness.

487
00:29:22,400 --> 00:29:25,400
Speaker 2: Well, thank you, Bob so much for giving me the

488
00:29:25,440 --> 00:29:28,200
Speaker 2: time to ask you all these questions. It's been really fascinating.

489
00:29:29,080 --> 00:29:31,719
Speaker 5: Well actually very grateful that you're talking about these issues.

490
00:29:31,800 --> 00:29:35,520
Speaker 5: They're very interesting to me obviously, but hopefully they're interesting

491
00:29:35,520 --> 00:29:38,400
Speaker 5: to your listeners. And I also think they're like really

492
00:29:38,440 --> 00:29:41,120
Speaker 5: important questions for us to be thinking about and grappling with.

493
00:29:42,720 --> 00:29:45,640
Speaker 2: We've heard a lot in this episode about how complicated

494
00:29:45,680 --> 00:29:48,880
Speaker 2: brain death really is and how in the end, it's

495
00:29:48,920 --> 00:29:54,040
Speaker 2: really a social construct. Bioethicist Yolanda Wilson says, if the

496
00:29:54,080 --> 00:29:57,920
Speaker 2: medical establishment wants people to accept a social construct like

497
00:29:58,000 --> 00:30:01,000
Speaker 2: brain death, then they have to wor kada to un

498
00:30:01,000 --> 00:30:02,760
Speaker 2: not trust.

499
00:30:02,320 --> 00:30:05,280
Speaker 1: The minute of highs. Grandmother said, hey, something is going wrong.

500
00:30:05,640 --> 00:30:08,160
Speaker 1: The position could have come in and wielder back to

501
00:30:08,240 --> 00:30:11,640
Speaker 1: surgery right away, and the outcome still may have been

502
00:30:11,720 --> 00:30:17,440
Speaker 1: what it was. But I think it adds unnecessary grief

503
00:30:17,520 --> 00:30:22,120
Speaker 1: and burden and distress to the family when they know

504
00:30:22,360 --> 00:30:24,800
Speaker 1: that they have reported things and that they have put

505
00:30:24,880 --> 00:30:30,280
Speaker 1: their trust in you, and to not have that respected

506
00:30:30,760 --> 00:30:38,240
Speaker 1: and then to demand that the family trust and believe

507
00:30:38,440 --> 00:30:41,800
Speaker 1: what you're reporting to them after the fact takes a

508
00:30:41,880 --> 00:30:47,800
Speaker 1: level of audacity that had I right, I don't have

509
00:30:47,880 --> 00:30:50,520
Speaker 1: access to that level of audacity in My Life.

510
00:30:51,240 --> 00:30:53,880
Speaker 2: Landa says trust needs to be as stibblished from the

511
00:30:54,000 --> 00:30:58,320
Speaker 2: very beginning, starting with something as basic as how physicians

512
00:30:58,360 --> 00:30:59,720
Speaker 2: communicate with patients.

513
00:31:00,560 --> 00:31:03,560
Speaker 1: At every level. There has to be a kind of

514
00:31:03,840 --> 00:31:09,320
Speaker 1: basic human decency and respect with which patients are greeted

515
00:31:10,360 --> 00:31:14,600
Speaker 1: from the initial entry point and treated throughout. This idea

516
00:31:14,640 --> 00:31:18,520
Speaker 1: of just kind of basic act of listening. Right, those

517
00:31:18,640 --> 00:31:21,480
Speaker 1: kinds of things can establish trust. And I think doctors

518
00:31:21,520 --> 00:31:25,120
Speaker 1: in particular are really bad with thinking that they know things.

519
00:31:25,600 --> 00:31:30,440
Speaker 1: And certainly there are certain expertise, there's absolute expertise that

520
00:31:30,520 --> 00:31:37,160
Speaker 1: one gains in medical school. But medical knowledge isn't knowledge

521
00:31:37,840 --> 00:31:42,560
Speaker 1: in all forms, across all domains, for all time.

522
00:31:46,680 --> 00:31:49,840
Speaker 2: Next time, on playing God, a thirty nine year old

523
00:31:49,880 --> 00:31:53,560
Speaker 2: woman is rushed to hospital in need of urgent medical treatment.

524
00:31:54,360 --> 00:31:56,880
Speaker 2: Her doctors tell her family that they know how to

525
00:31:56,920 --> 00:32:01,640
Speaker 2: save her life, but according to that policies, they won't

526
00:32:01,640 --> 00:32:05,280
Speaker 2: treat her, not for six months. So what's behind the

527
00:32:05,440 --> 00:32:09,960
Speaker 2: so called six month rule for liver transplants and how

528
00:32:10,080 --> 00:32:14,080
Speaker 2: is it ethical? We'll hear from a Johns Hopkins transplant

529
00:32:14,120 --> 00:32:18,640
Speaker 2: surgeon who says that this widespread practice is based on stigma,

530
00:32:18,880 --> 00:32:22,400
Speaker 2: not science, and he is not standing for it.

531
00:32:22,880 --> 00:32:27,200
Speaker 6: Transplant centers. As they see that good results are possible,

532
00:32:27,480 --> 00:32:30,120
Speaker 6: We'll go for it, and they'll they'll take a chance

533
00:32:30,160 --> 00:32:33,760
Speaker 6: and do the transplant, and they'll realize, holy cow, we

534
00:32:33,880 --> 00:32:37,920
Speaker 6: almost let that wonderful person die. Thank God we made

535
00:32:37,960 --> 00:32:40,480
Speaker 6: the right decision and gave him a second chance.

536
00:32:45,720 --> 00:32:49,040
Speaker 2: Big thanks to our guests in this episode, Yolanda Wilson

537
00:32:49,120 --> 00:32:54,440
Speaker 2: and Bob Drug. Playing God is a co production of

538
00:32:54,520 --> 00:32:58,840
Speaker 2: Pushkin Industries and the Johns Hopkins Berman Institute of Bioethics.

539
00:33:00,120 --> 00:33:03,840
Speaker 2: Emily Bourne is our lead producer. This episode was also

540
00:33:03,920 --> 00:33:06,520
Speaker 2: produced by Sophie Crane and Lucy Sullivan.

541
00:33:07,000 --> 00:33:08,120
Speaker 3: Our editors are.

542
00:33:08,080 --> 00:33:12,680
Speaker 2: Karen Chakerjee and Kate Parkinson Morgan Deem. Music and mixing

543
00:33:12,920 --> 00:33:18,600
Speaker 2: by Echo Mountain Engineering support from Sarah Bruguerre and Amanda Kawan.

544
00:33:19,720 --> 00:33:23,680
Speaker 2: Show art by Sean Krney, fact checking by David jar

545
00:33:24,040 --> 00:33:29,240
Speaker 2: and Arthur Gompertz. Our executive producer is Justine Lang at

546
00:33:29,240 --> 00:33:33,240
Speaker 2: the Johns Hopkins Berman Institute of Bioethics. Our executive producers

547
00:33:33,320 --> 00:33:37,280
Speaker 2: are Jeffrey Kahan and Anna Mastriani, working with Amelia Hood.

548
00:33:37,800 --> 00:33:42,560
Speaker 2: Funding provided by the Greenwall Foundation. I'm Laurena Rura Hutchinson.

549
00:33:42,720 --> 00:33:54,160
Speaker 2: Come back next week for more Playing God. Has this

550
00:33:54,200 --> 00:33:59,080
Speaker 2: show inspired you? Are you interested in studying bioethics, Perhaps

551
00:33:59,120 --> 00:34:02,280
Speaker 2: you want to become one shaping this field. We have

552
00:34:02,320 --> 00:34:05,480
Speaker 2: a Master of Bioethics program at the Johns Hopkins Berman

553
00:34:05,560 --> 00:34:09,600
Speaker 2: Institute of Bioethics. To find out more, visit Bioethics dot

554
00:34:09,680 --> 00:34:14,920
Speaker 2: Jhu dot edu. Forward slash MBE scholarships are available