October 17, 2023 • 34 mins
When a 13 year-old girl from Oakland named Jahi McMath was pronounced brain dead after a surgical complication in 2013, California issued her a death certificate. Five years later, she received a second death certificate in New Jersey. How could one person die twice? In this episode, we learn that the line between life and death isn’t always as clear as you might think.
Show notes:
This episode features interviews with:
Yolonda Wilson, Associate Professor at the Albert Gnaegi Center for Health Care Ethics at Saint Louis University
Jeffrey Kahn, Andreas C. Dracopolous Director of the Johns Hopkins Berman Institute of Bioethics
Bob Truog, who is the Frances Glessner Lee Distinguished Professor of Medical Ethics, Anaesthesia, and Pediatrics at Harvard Medical School and Boston Children’s Hospital.
This episode references a New Yorker article about Jahi’s case, which you can read here. It also references the Uniform Determination of Death Act (UDDA), which you can read here.
To learn more about the ethics issues raised in this episode visit the Berman Institute’s episode guide.
The Greenwall Foundation seeks to make bioethics integral to decisions in healthcare, policy and research. Learn more at greenwall.org.
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 1 (00:04):
Jehi Macmath entered the hospital December ninth, twenty thirteen. By
December twelfth, the medical staff at Children's Hospital declared that
Jehi was, in fact brain did. Already, Jehi's family did
not feel that Jehi got the kind of care that
she should have gotten, and so to come before the
(00:25):
family now and say, oh, yeah, her heart still seems
to be beating, but no, no, no, she's actually did
I think that that was always going to be a
hard pill to swallow.
Speaker 2 (00:39):
Yilanda Wilson is talking about the case of Jehi Macmath,
a thirteen year old girl from Oakland, California. Jahai's story
caught her attention soon after it became national news. Ylanda
is a professor of health Catholics at Saint Lewis University.
She could sense right away that Jehi's case was incredibly difficult.
Speaker 1 (01:00):
Jehi McMath's family was understandably distraught at the possible loss
of their child. They did not accept that Jahai was
in fact brain did.
Speaker 2 (01:18):
Jehai originally came to the hospital for a routine surgery,
and overall, her family says she was friendly and happy
and in good health, but she had issues with snoring,
that caused her trouble sleeping, so Jahai's doctor recommended that
she get a tonsilecto.
Speaker 1 (01:34):
Me even the slightly more complex procedure of the tonsils
and adenoids, I think we think of that as fairly
routine and not something that you wouldn't be able to
come home from.
Speaker 2 (01:47):
In the recovery room, it seemed like the procedure had
gone just fine. Nurses gave Jahai a popsicle to see
her throat, but just an hour after Jahai came to
she started to spit up after a ton select to me,
it's normal to have some bleeding, but Jehai seemed to
be bleeding a lot, so Jahai's family alerted the nurses.
(02:10):
The nurses wrote down the family's concerns in Jehai's chart,
but nothing further happened. Jahai's grandmother, who had been a
nurse for thirty years at a local surgery clinic, told
anyone who had listened that Jahai's bleeding seemed abnormal, but
the physicians decided no intervention was necessary. Jahai's family said
(02:31):
they tried for hours to get anyone at the hospital
to take action.
Speaker 1 (02:37):
Jehai's mother said no one was listening to us, and
I can't prove it, but I really feel in my
heart that if Jehi was a little white girl, I
feel that we would have gotten a little bit more
help and attention.
Speaker 2 (02:50):
Jehai and her family are black, and it's worth noting
that there is a long history of racism against black
people in healthcare, so there is a much larger con
text behind her mother's distrust. Four and a half hours
after Jahi's bleeding started, her grandmother noticed a sharp drop
off in her blood, oxygen levels, and heart rate. Jehai's
(03:11):
grandmother alerted the nurses, and finally they listened. Several doctors
and nurses rushed into the room, but by then it
was too late. Jahai's surgery sight had hemorrhaged.
Speaker 1 (03:24):
Due to the blood loss. Jehi went into cardiac arrest
and her brain was deprived of oxygen, and so she
was brain died. The medical staff encouraged the family to
withdraw any kind of continuing care since she was brain deed,
and to donate her organs.
Speaker 2 (03:45):
That's when something happened to turn Jahi's case from one
family's tragedy into a story that made national headlines for
years to come. Jehai's family told the hospital no, they
did not accept the Jahai was dead, and they refused
to let the doctors take Jahai off life support.
Speaker 1 (04:05):
The family, for, you know, for lots of reasons that
I think may be quite reasonable given what they experienced,
were very concerned, maybe that she was declared brain did
to hastily.
Speaker 2 (04:20):
For days, Jehai's family held their stance. Meanwhile, the hospital
grew impatient. The twenty eighteen New Yorker article about the
case described a conversation between the family and one of
the doctors. According to the article, the doctor pounded his
fist on a table and said to Jahi's family, quote,
(04:41):
what is it that you don't understand? She's dead? Dead
dead end quote. The doctor denies saying this, but even so,
Yolanda says, the disconnect was never as simple as a misunderstanding.
Speaker 1 (04:55):
I think it's very easy to just dismiss patients or
dismiss their families as difficult or ignorant or ridiculous. But
when you're coming from a place of feeling that you
were not heard or cared for properly, I think it's
quite rational to be upset or to have additional questions
about what you're being told.
Speaker 3 (05:17):
I'm Laurena Rora Hutchinson.
Speaker 2 (05:19):
I'm the director of the Ideas Lab at the Johns
Hopkins Berman Institute of Bioethics. In today's show, Brain Death,
how did this concept reshape our very definition of death?
We explore why some bioethicists are calling for even more
nuance as we rethink the line between life and death.
(05:41):
From Pushkin Industries and the Johns Hopkins Berman Institute of Bioethics,
this is playing God.
Speaker 3 (05:56):
To high.
Speaker 2 (05:57):
Story is so sad. There was so many factors working
against her and her family in the course of what
was supposed to be a pretty routine procedure. We'll return
to Jahia's story later in this episode, but first, there's
something about it that I didn't understand. How is it
that doctors and family members can disagree over what it
(06:20):
means to die? And how exactly did we arrive at
this concept of brain death? To find out, I once
again reached out to my Berman Institute colleague, Jeffrey Kahn.
So thanks for coming on today, Jeff to discuss this
tremendously difficult and tragic story.
Speaker 4 (06:39):
Thank you for having me on again. Lauren and A
very tragic and difficult story and really challenging to imagine
losing your child after what seems to be a routine
procedure in hearing that she has died. So it's a
really challenging story and raises some very difficult issues as
we'll discuss us.
Speaker 3 (07:01):
Yeah, for sure, so, Jeff.
Speaker 2 (07:03):
In the last episode we talked about bioethics as it
relates to life and life saving technology, but not death,
and so this is a bit of a change of
gears for us, isn't it.
Speaker 4 (07:13):
It is a little bit, But without the technologies that
allow people to be kept alive, we would not need
to be talking about what it means to die. So
there's a very clear relationship between these new life saving
technologies and what now is required for us to grapple with,
which is new ways of understanding what it means to
(07:34):
be dead.
Speaker 2 (07:36):
I'm not really used to thinking about death as if
it's ambiguous. I always thought that it was the you're
either dead or you're not, and I.
Speaker 4 (07:44):
Think most of us feel that way too, And for millennia,
really for all of human history, it was very clear
when people died, they stopped breathing, their hearts up beating
and they turned blue, and it was obvious that they
were dead. With the advent of technologies like ventilators, people's
bodies could be kept alive and it seemed indefinitely, even
(08:07):
though it seemed like their brains no longer functioning and
the person, the people that were represented by that body
were no longer there. And so technology has demanded us
to grapple with what it means for a body to
be kept alive when maybe the person is no longer
with us.
Speaker 2 (08:27):
So you said that it's a newer way to talk
about death. So where does this concept come from then.
Speaker 4 (08:35):
Well, it really was spurred by the technologies that allowed
people to be kept alive when that wasn't possible before.
So when people were unconscious after an accident or a
stroke or some kind of an incident that made it
necessary for a machine to help them breathe. Before those
machines called ventilators were available, they would have just died.
(08:56):
But with the advent of a mechanical ventilation, people could
be kept alive hopefully to recover. They could be treated,
and they would recover and breathe on their own and
maybe eventually leave the hospital. Ventilators brought with it some
very clear questions about when it was time to turn
off the ventilator and allow the body to die. And
(09:20):
so a Harvard committee was convened to actually craft the
first definitions of what became known as neurological death, and
sometimes in common language we call it brain death. So
when a person is declared dead not because their body
has died, but because their brain has stopped functioning in
very clearly defined ways, So their brain has died even
(09:43):
if their body has not.
Speaker 3 (09:45):
So was Jahi on a ventilator.
Speaker 4 (09:48):
She was maintained on a ventilator for some period of time,
raising exactly the kinds of questions that came up going
back to the nineteen sixties, and really importantly to say,
those issues are with us every day and hospitals around
the world. So these issues started in the nineteen sixties
and continue with us today.
Speaker 2 (10:10):
So can you help me understand what brain death is exactly?
So how is it different to a coma? Is being
brain dead sort of like a highly technical diagnosis for
a person who'll never wake up again.
Speaker 4 (10:21):
It's a lot like what you're describing. It is a
pretty technical definition. It's different than coma, and that people
can wake up from comas, certain aspects of brain function
remain in coma that are gone. In the case of
neurological death or brain death, certain important parts of brain
function have stopped and won't come back. So that's a
(10:44):
really important aspect of brain death. So there's been a
determination by neurologists that those brain functions that allow us
to be the people we think of as persons are
gone and will not return. The challenges. People lying in
bed on a ventilator who are diagnosed as being in
a coma look very much like somebody who's asleep, look
(11:07):
very much like someone who can be declared brain dead,
and so that's why it's really confusing for families to
distinguish somebody being asleep from somebody being brain dead or
in a coma, And so it relies on assessment by experts,
and so that's I think part of why this is
a really difficult concept both to understand just as interested people,
(11:30):
but also if you're a family member in a position
that's being told your loved one is not going to
wake up and it's time to remove life support and
to declare them dead.
Speaker 2 (11:41):
Yeah, so I could see how it's confusing So would
you say that the brain death definition was meant to
provide a kind of humane release for someone who's being
kept alive who might not want to under these circumstances,
and also for those families who won't get the love
on back and they need some kind of sense of closure.
Speaker 4 (12:00):
Yes, And I think it was meant to avoid what
felt like a very unacceptable outcome where a patient's body
could be kept alive for a very long time with
no possibility of their ever becoming aware of their surroundings. Again,
that they would never wake up, and that seems like
something that almost nobody would want to have happened to them.
(12:23):
And so it created a way for us to say,
this person is dead, just as if their heart stopped
beating and they stop breathing. This machine is what's keeping
them alive, but otherwise they're dead.
Speaker 3 (12:37):
And is not the only reason.
Speaker 4 (12:39):
Well, it turns out that there's a kind of secondary
effect of maintaining people on life support after they have
been declared brain dead. It makes it possible for their
organs to be donated for transplant in a way that
would not be possible if we waited for whole body death.
So when a person's heart stops speeding and stop breathing,
(13:00):
and they're declared that way, their organs are no longer
usable for transplant. But if an individual is declared brain dead,
their body can be maintained on a ventilator and their
organs can be collected and transplanted to numerous other people
to help save their lives. They go hand in hand.
It isn't that brain death was created as a concept
(13:23):
to allow organ donation and organ transplant, but they're very
closely related.
Speaker 2 (13:28):
But that's not the motivation as to why doctors declare
people brain dead.
Speaker 4 (13:31):
Right, And the decision to donate organs on the part
of the family is intentionally separated from the decision about
removing life support as a way of making sure that
the decision to declare somebody dead is not motivated by
the opportunity to collect their organs.
Speaker 2 (13:50):
Okay, that makes sense. So from what you've said so far,
it sounds to me like you're saying that brain death
was socially constructed and that it's something that was agreed
upon by experts for a reason.
Speaker 4 (14:02):
I think that's exactly the right way to characterize it.
If we have a way to keep a body alive
by this life support technology. We do need a societally
agreed upon social construct of what it means to die
by this other set of criteria, by neurological criteria, by
brain criteria. And so it is very widely accepted, and
(14:26):
every state in the United States accepts it, and it
is accepted by the expert community. There are some members
of society that do not accept it, mostly based on
religious belief that that kind of definition of death doesn't
count for them. The only death that counts this whole
body death. But that's a small subset of the American
(14:47):
and I would say world population.
Speaker 2 (14:49):
Okay, So given that brain death is a social construct,
I could understand why some people might find it harder
to accept this definition.
Speaker 4 (15:01):
It's true, and in particular, if you are from a
community that feels as if their views have not been
respected and represented, it's understandable that there would be suspicion
when people who don't look like you and don't seem
to represent your views and maybe your values show up
and say your loved one is dead. It's time to
(15:24):
remove this machine from them, even though they're warm and
breathing and their heart is still beating and they, as
I said before, look like they're asleep. And so it's
very understandable that this debate is happening at the bedside
sometimes between medical experts and the patient's families. And it's
(15:45):
I think very understandable that in a case like Jahai
make Maths, the family was not fully trusting of what
they were hearing from the people who were telling them
that their daughter was now dead. It, I think, to me,
unders wars the importance of explanation and trust and listening
and trying to make clear that the values that are
(16:09):
being expressed by the family are those that are being
respected by the institutions.
Speaker 2 (16:15):
Okay, thank you. That helps me make a lot more
sense of what's gone on in Jehia's case and how
there can be any ambiguity around whether someone's died or not.
So thanks so much for explaining that to us.
Speaker 4 (16:28):
Thanks for the good conversation today.
Speaker 2 (16:32):
We're going to take a short break. When we return,
we'll hear from a physician who studied the case of
Jehi macmath. He thinks his profession needs to better understand
the pain and mistrust grieving families feel.
Speaker 5 (16:46):
I could understand why people might not accept the diagnosis
of brain death, and also that it was a legitimate objection,
and I began to think about better ways that we
could talk about what brain death means.
Speaker 2 (16:59):
Playing God, godd will be right back. Jehi Macmath has
two death certificates, one in California when she was declared
brain dead and one in New Jersey, issued more than
(17:21):
four years later when her organs finally gave out. Once
the California hospital declared Jehai brain dead on December twelfth,
twenty thirteen, she could no longer be kept on life
support long term, but Jehai's family refused to let the
hospital end treatment. Jehai's mother told doctors that according to
(17:45):
her Christian faith, someone is alive as long as their
heart is beating, and life support was keeping Jahi's heart beating.
So Jehai's family transferred her to a care facility in
New Jersey, the only state in the US that had
allows people to opt out of death by brain criteria
even if the hospital or doctor doesn't support it. They
(18:07):
permit exceptions based on deeply held philosophical.
Speaker 3 (18:10):
Or religious views.
Speaker 2 (18:12):
Jehai was kept on life support for more than four years.
In that time, her body even went through puberty, but
eventually even the machines couldn't keep her organs functioning, so
on June twenty nine, twenty eighteen, New Jersey issued Jahai's
second death certificate. The fact that Jahi was issued to
(18:33):
death certificates is just one example of the gray area
created by brain death and how it can present problems.
Speaker 5 (18:41):
I think for any intensive care doctor, it's one of
the things that we hopefully take the most pride in
as being able to work with families who are going
through truly the most painful moments of their life. You know,
times they will never forget for as long as they live.
Speaker 2 (18:57):
This is Bob Drug. He's a professor of medical ethics
at Harvard. He's also an intensive care physician at Boston
Children's Hospital, and in that role he sometimes has to
deliver the news to families that their child isn't coming back,
that they're brain dead. His interest in the ethics of
brain death started back when he was a medical student.
(19:20):
He says, from the moment he first encountered the concept
of brain death, he felt like it didn't quite match
up to what he was seeing and how he thought
about what it means to be dead.
Speaker 5 (19:31):
We were told that you do these tests, you see
if the child's pupils react to light or they respond
to a painful stimulus, and you go through this battery
of tests, and if you do that and all the
tests come out negative, the patient is dead. It didn't
correspond to kind of what I'd always thought about death,
(19:52):
you know, having had grandparents die and things like that.
These patients did not look like what you would typically
think of as a head person. Their hearts were beating,
their skin was warm, they had pulses, their chest was
going up and down with breaths, all of those things
a brain dead person can do.
Speaker 2 (20:13):
He tried to talk about his reservations with his instructors
and classmates, but he says they shut him down.
Speaker 5 (20:20):
I met with a very strong dogma within the profession,
which is that this is simply death, as if there
should be obvious to anyone who looked at the situation.
Speaker 2 (20:33):
Over time, Bob grew more convinced that it's not obvious
that brain death is death. In twenty eighteen, he was
interviewed for the New Yorker article about Jehi Macmath. Bob
said that the disconnect between Jehi's family and her doctors
was understandable. Since then, Bob has continued to study and
(20:53):
write about the complex social issues surrounding brain death, and
he often uses Jahai's case as an example of how
things can go wrong. So I wanted to hear more
about what he thinks the problems are with the way
brain death is conceptualized.
Speaker 5 (21:10):
What brain death does is it says, if you are
permanently unconscious and have permanently lost the capacity for spontaneous respiration,
we consider you to be dead. You are legally dead.
Speaker 6 (21:26):
Now.
Speaker 5 (21:27):
The reason why this has largely been accepted, I think
by the American public and certainly most of the Western world,
has been that for many people, if they're never going
to wake up again and never going to breathe on
their own again, they'd go like, fine, you know, I mean,
this is my view. I am as good as dead,
(21:47):
and in fact, if my organs could help save the
life of somebody else when I'm in that condition, I
would like you to use them for that purpose. The
thing is we haven't been transparent about that. We haven't
said that that's exactly what we're doing. And I thought
that the alleged quote from Johi mcmaths, physician of what
is it you don't understand about death? She's dead dead
dead is kind of a way of trying to overcome
(22:12):
that lack of transparency.
Speaker 2 (22:14):
And so, if it is a social construct, would you
say then that it becomes understood differently by different people
who have different positions in society or experiences.
Speaker 5 (22:24):
Well, you know, I think that's actually a debatable point
because there's many social constructs that we don't give people
choices about. You know, the idea that you can't marry
more than one person. There's nothing biological about it that
says you can't, and yet we've all agreed in our
society that each person can only have one legal spouse.
(22:45):
There's all sorts of social constructs that we force on
people in our society, and legitimately that's so that we
can all live together peacefully. So it's absolutely it's a
social construct. But I also think there's a reasonable argument
for people who don't accept that social construct to at
least have the opportunity to express that view and perhaps
(23:07):
even have the right to reject that diagnosis if it's
not a social construct that they agree with.
Speaker 2 (23:15):
And so would you say it is accurates to say
in Jahi's case that the family were right in thinking
that she was still alive in terms of their understanding
of the word death, but then also simultaneously the doctors
were right to say she was dead.
Speaker 5 (23:34):
I'm a little bit reluctant to say one was right
or they both were right. I think the doctors were
wrong in dismissing the question why is she dead? Were
they behaving in the way that they had been trained,
the way that I had been trained? Yes, they were,
but that doesn't make it right.
Speaker 2 (23:53):
Do you feel that there's an alternative framework to brain
death that you think might be more ethical or less
ambiguit Yes.
Speaker 5 (24:01):
My preferred choice is to define death the way that
it has actually been diagnosed for the last forty years,
which is, if we determine that you're permanently unconscious and
have permanently lost the capacity for spontaneous respiration, you are
legally dead, and that allows patients to donate organs and
(24:22):
organs to be procured without violating the dead donor rule.
But I also believe that we should allow patients to
opt out of that diagnosis, since it's not the same
as biological death, and many people either on the basis
of their religious beliefs or personal convictions. Don't believe that
you're really dead until after you're biologically dead. People who
(24:45):
felt strongly about it could document that in their medical
record at any point in their life and it would
be respected. But I think in most cases it does
come down to the family saying, for example, we're Orthodox
Jewish and it's against our religion, or we're Buddhist and
it's against our religion, or I just know that Uncle
Joe would never agree with being diagnosed as dead this way,
(25:06):
and I think all of those ways would count.
Speaker 2 (25:09):
So could you talk a bit about what problems that
creates more broadly.
Speaker 5 (25:15):
Well, more broadly, we do have a shortage of ICU
beds and doctors and nurses, and you want those resources
to be devoted towards people who are going to recover,
go out of the ICU and go on to live
a life, and in brain death, that's not the case.
That diagnosis really kind of solves a rationing problem in
(25:37):
the ICU. And one of the questions going forward is
that if patients have a right to refuse to accept
the diagnosis of brain death, does that mean that our
ICUs are suddenly going to become overflowing, and I think
to a certain extent that's an unknown question. But we
do have the experience from New Jersey because patients have
been able to opt out of the diagnosis in New
(25:59):
Jersey now for over thirty years. To my knowledge, I
see you, utilization really has been just pretty much normal
in New Jersey.
Speaker 2 (26:07):
And with your preferred way, would that framework have helped
in the Jehi Macmath case.
Speaker 5 (26:15):
Yes, it would have. I think McMath's family would have
been told that they did not have to accept the
determination of death by neurological criteria.
Speaker 2 (26:25):
So could you tell us what experts like bioethesis and
neurologists are doing to attempt to update the brain death definition.
Speaker 5 (26:34):
So the Johih Macmath case and many of the others
like it have led to many lawsuits of families objecting
to the determination of death by neurological criteria, and out
of that there was a movement to think about revising
the Uniform Determination of Death Act that had been adopted
in nineteen eighty one. The group that would do that
(26:58):
is called the Uniform Law Commission. So that committee has
now been meeting for over two years, and there are
some who say that the current definition has worked well enough,
others who like myself, believe that the law needs to
be more transparent than it is. The other big aspect
that's under discussion is whether patients or families should be
(27:20):
allowed to opt out of the diagnosis.
Speaker 2 (27:23):
And if there was to be a kind of a
major change in the definition of death, do you think
that that it would have an impact on organ donation.
Speaker 5 (27:32):
One of the concerns of that line of reasoning would
be that if the Uniform Law Commission were to go
in that direction, that there could be states who would
say that brain death is not actually a way of
diagnosing death, it's only a way of diagnosing a severe
brain injury, and that it would be wrong to remove
life support from these patients or to procure their organs
(27:53):
for transplantation. One of the concerns that people might have
then is that some states could in turn a revised
Uniform Determination of Death Act in a way that would
make it illegal or impermissible to procure organs from patients
who are declared brain dead, and that could then have
(28:14):
ripple effects in terms of the availability of transplantable organs.
I mean, it would be a frigging nightmare and I'm
hoping that both the Uniform Law Commission and our society
can come to the sorts of agreements that will allow
what I believe to be reasonable decisions by patients and
families to donate their organs, and for us to be
(28:35):
able to use those organs to save the lives of others.
Speaker 2 (28:38):
Going back to Jehi's case, there was so much mistrust
between Jehi's family and her doctor's, understandably, and it seems
to me that the greater transparency that you're pushing for
could help repair some of the distrust between doctors and patients,
specifically when it comes to discussing concepts like brain death.
Is that fair to say?
Speaker 5 (28:57):
I think you know, trust is easy to lose but
very hard to regain. And we've seen, you know, as
we've sadly gone through the pandemic and the lack of
trust the public has in the medical profession about the
efficacy of vaccines and things like this. Brain death just
adds to that list. But there's never ever been a
recorded case of somebody who's been correctly diagnosed as braindead
(29:19):
who's ever recovered consciousness.
Speaker 2 (29:22):
Well, thank you, Bob so much for giving me the
time to ask you all these questions. It's been really fascinating.
Speaker 5 (29:29):
Well actually very grateful that you're talking about these issues.
They're very interesting to me obviously, but hopefully they're interesting
to your listeners. And I also think they're like really
important questions for us to be thinking about and grappling with.
Speaker 2 (29:42):
We've heard a lot in this episode about how complicated
brain death really is and how in the end, it's
really a social construct. Bioethicist Yolanda Wilson says, if the
medical establishment wants people to accept a social construct like
brain death, then they have to wor kada to un
not trust.
Speaker 1 (30:02):
The minute of highs. Grandmother said, hey, something is going wrong.
The position could have come in and wielder back to
surgery right away, and the outcome still may have been
what it was. But I think it adds unnecessary grief
and burden and distress to the family when they know
(30:22):
that they have reported things and that they have put
their trust in you, and to not have that respected
and then to demand that the family trust and believe
what you're reporting to them after the fact takes a
level of audacity that had I right, I don't have
(30:47):
access to that level of audacity in My Life.
Speaker 2 (30:51):
Landa says trust needs to be as stibblished from the
very beginning, starting with something as basic as how physicians
communicate with patients.
Speaker 1 (31:00):
At every level. There has to be a kind of
basic human decency and respect with which patients are greeted
from the initial entry point and treated throughout. This idea
of just kind of basic act of listening. Right, those
kinds of things can establish trust. And I think doctors
(31:21):
in particular are really bad with thinking that they know things.
And certainly there are certain expertise, there's absolute expertise that
one gains in medical school. But medical knowledge isn't knowledge
in all forms, across all domains, for all time.
Speaker 2 (31:46):
Next time, on playing God, a thirty nine year old
woman is rushed to hospital in need of urgent medical treatment.
Her doctors tell her family that they know how to
save her life, but according to that policies, they won't
treat her, not for six months. So what's behind the
so called six month rule for liver transplants and how
(32:10):
is it ethical? We'll hear from a Johns Hopkins transplant
surgeon who says that this widespread practice is based on stigma,
not science, and he is not standing for it.
Speaker 6 (32:22):
Transplant centers. As they see that good results are possible,
We'll go for it, and they'll they'll take a chance
and do the transplant, and they'll realize, holy cow, we
almost let that wonderful person die. Thank God we made
the right decision and gave him a second chance.
Speaker 2 (32:45):
Big thanks to our guests in this episode, Yolanda Wilson
and Bob Drug. Playing God is a co production of
Pushkin Industries and the Johns Hopkins Berman Institute of Bioethics.
Emily Bourne is our lead producer. This episode was also
produced by Sophie Crane and Lucy Sullivan.
Speaker 3 (33:07):
Our editors are.
Speaker 2 (33:08):
Karen Chakerjee and Kate Parkinson Morgan Deem. Music and mixing
by Echo Mountain Engineering support from Sarah Bruguerre and Amanda Kawan.
Show art by Sean Krney, fact checking by David jar
and Arthur Gompertz. Our executive producer is Justine Lang at
(33:29):
the Johns Hopkins Berman Institute of Bioethics. Our executive producers
are Jeffrey Kahan and Anna Mastriani, working with Amelia Hood.
Funding provided by the Greenwall Foundation. I'm Laurena Rura Hutchinson.
Come back next week for more Playing God. Has this
(33:54):
show inspired you? Are you interested in studying bioethics, Perhaps
you want to become one shaping this field. We have
a Master of Bioethics program at the Johns Hopkins Berman
Institute of Bioethics. To find out more, visit Bioethics dot
Jhu dot edu. Forward slash MBE scholarships are available
Jehi Macmath entered the hospital December ninth, twenty thirteen. By
December twelfth, the medical staff at Children's Hospital declared that
Jehi was, in fact brain did. Already, Jehi's family did
not feel that Jehi got the kind of care that
she should have gotten, and so to come before the
(00:25):
family now and say, oh, yeah, her heart still seems
to be beating, but no, no, no, she's actually did
I think that that was always going to be a
hard pill to swallow.
Speaker 2 (00:39):
Yilanda Wilson is talking about the case of Jehi Macmath,
a thirteen year old girl from Oakland, California. Jahai's story
caught her attention soon after it became national news. Ylanda
is a professor of health Catholics at Saint Lewis University.
She could sense right away that Jehi's case was incredibly difficult.
Speaker 1 (01:00):
Jehi McMath's family was understandably distraught at the possible loss
of their child. They did not accept that Jahai was
in fact brain did.
Speaker 2 (01:18):
Jehai originally came to the hospital for a routine surgery,
and overall, her family says she was friendly and happy
and in good health, but she had issues with snoring,
that caused her trouble sleeping, so Jahai's doctor recommended that
she get a tonsilecto.
Speaker 1 (01:34):
Me even the slightly more complex procedure of the tonsils
and adenoids, I think we think of that as fairly
routine and not something that you wouldn't be able to
come home from.
Speaker 2 (01:47):
In the recovery room, it seemed like the procedure had
gone just fine. Nurses gave Jahai a popsicle to see
her throat, but just an hour after Jahai came to
she started to spit up after a ton select to me,
it's normal to have some bleeding, but Jehai seemed to
be bleeding a lot, so Jahai's family alerted the nurses.
(02:10):
The nurses wrote down the family's concerns in Jehai's chart,
but nothing further happened. Jahai's grandmother, who had been a
nurse for thirty years at a local surgery clinic, told
anyone who had listened that Jahai's bleeding seemed abnormal, but
the physicians decided no intervention was necessary. Jahai's family said
(02:31):
they tried for hours to get anyone at the hospital
to take action.
Speaker 1 (02:37):
Jehai's mother said no one was listening to us, and
I can't prove it, but I really feel in my
heart that if Jehi was a little white girl, I
feel that we would have gotten a little bit more
help and attention.
Speaker 2 (02:50):
Jehai and her family are black, and it's worth noting
that there is a long history of racism against black
people in healthcare, so there is a much larger con
text behind her mother's distrust. Four and a half hours
after Jahi's bleeding started, her grandmother noticed a sharp drop
off in her blood, oxygen levels, and heart rate. Jehai's
(03:11):
grandmother alerted the nurses, and finally they listened. Several doctors
and nurses rushed into the room, but by then it
was too late. Jahai's surgery sight had hemorrhaged.
Speaker 1 (03:24):
Due to the blood loss. Jehi went into cardiac arrest
and her brain was deprived of oxygen, and so she
was brain died. The medical staff encouraged the family to
withdraw any kind of continuing care since she was brain deed,
and to donate her organs.
Speaker 2 (03:45):
That's when something happened to turn Jahi's case from one
family's tragedy into a story that made national headlines for
years to come. Jehai's family told the hospital no, they
did not accept the Jahai was dead, and they refused
to let the doctors take Jahai off life support.
Speaker 1 (04:05):
The family, for, you know, for lots of reasons that
I think may be quite reasonable given what they experienced,
were very concerned, maybe that she was declared brain did
to hastily.
Speaker 2 (04:20):
For days, Jehai's family held their stance. Meanwhile, the hospital
grew impatient. The twenty eighteen New Yorker article about the
case described a conversation between the family and one of
the doctors. According to the article, the doctor pounded his
fist on a table and said to Jahi's family, quote,
(04:41):
what is it that you don't understand? She's dead? Dead
dead end quote. The doctor denies saying this, but even so,
Yolanda says, the disconnect was never as simple as a misunderstanding.
Speaker 1 (04:55):
I think it's very easy to just dismiss patients or
dismiss their families as difficult or ignorant or ridiculous. But
when you're coming from a place of feeling that you
were not heard or cared for properly, I think it's
quite rational to be upset or to have additional questions
about what you're being told.
Speaker 3 (05:17):
I'm Laurena Rora Hutchinson.
Speaker 2 (05:19):
I'm the director of the Ideas Lab at the Johns
Hopkins Berman Institute of Bioethics. In today's show, Brain Death,
how did this concept reshape our very definition of death?
We explore why some bioethicists are calling for even more
nuance as we rethink the line between life and death.
(05:41):
From Pushkin Industries and the Johns Hopkins Berman Institute of Bioethics,
this is playing God.
Speaker 3 (05:56):
To high.
Speaker 2 (05:57):
Story is so sad. There was so many factors working
against her and her family in the course of what
was supposed to be a pretty routine procedure. We'll return
to Jahia's story later in this episode, but first, there's
something about it that I didn't understand. How is it
that doctors and family members can disagree over what it
(06:20):
means to die? And how exactly did we arrive at
this concept of brain death? To find out, I once
again reached out to my Berman Institute colleague, Jeffrey Kahn.
So thanks for coming on today, Jeff to discuss this
tremendously difficult and tragic story.
Speaker 4 (06:39):
Thank you for having me on again. Lauren and A
very tragic and difficult story and really challenging to imagine
losing your child after what seems to be a routine
procedure in hearing that she has died. So it's a
really challenging story and raises some very difficult issues as
we'll discuss us.
Speaker 3 (07:01):
Yeah, for sure, so, Jeff.
Speaker 2 (07:03):
In the last episode we talked about bioethics as it
relates to life and life saving technology, but not death,
and so this is a bit of a change of
gears for us, isn't it.
Speaker 4 (07:13):
It is a little bit, But without the technologies that
allow people to be kept alive, we would not need
to be talking about what it means to die. So
there's a very clear relationship between these new life saving
technologies and what now is required for us to grapple with,
which is new ways of understanding what it means to
(07:34):
be dead.
Speaker 2 (07:36):
I'm not really used to thinking about death as if
it's ambiguous. I always thought that it was the you're
either dead or you're not, and I.
Speaker 4 (07:44):
Think most of us feel that way too, And for millennia,
really for all of human history, it was very clear
when people died, they stopped breathing, their hearts up beating
and they turned blue, and it was obvious that they
were dead. With the advent of technologies like ventilators, people's
bodies could be kept alive and it seemed indefinitely, even
(08:07):
though it seemed like their brains no longer functioning and
the person, the people that were represented by that body
were no longer there. And so technology has demanded us
to grapple with what it means for a body to
be kept alive when maybe the person is no longer
with us.
Speaker 2 (08:27):
So you said that it's a newer way to talk
about death. So where does this concept come from then.
Speaker 4 (08:35):
Well, it really was spurred by the technologies that allowed
people to be kept alive when that wasn't possible before.
So when people were unconscious after an accident or a
stroke or some kind of an incident that made it
necessary for a machine to help them breathe. Before those
machines called ventilators were available, they would have just died.
(08:56):
But with the advent of a mechanical ventilation, people could
be kept alive hopefully to recover. They could be treated,
and they would recover and breathe on their own and
maybe eventually leave the hospital. Ventilators brought with it some
very clear questions about when it was time to turn
off the ventilator and allow the body to die. And
(09:20):
so a Harvard committee was convened to actually craft the
first definitions of what became known as neurological death, and
sometimes in common language we call it brain death. So
when a person is declared dead not because their body
has died, but because their brain has stopped functioning in
very clearly defined ways, So their brain has died even
(09:43):
if their body has not.
Speaker 3 (09:45):
So was Jahi on a ventilator.
Speaker 4 (09:48):
She was maintained on a ventilator for some period of time,
raising exactly the kinds of questions that came up going
back to the nineteen sixties, and really importantly to say,
those issues are with us every day and hospitals around
the world. So these issues started in the nineteen sixties
and continue with us today.
Speaker 2 (10:10):
So can you help me understand what brain death is exactly?
So how is it different to a coma? Is being
brain dead sort of like a highly technical diagnosis for
a person who'll never wake up again.
Speaker 4 (10:21):
It's a lot like what you're describing. It is a
pretty technical definition. It's different than coma, and that people
can wake up from comas, certain aspects of brain function
remain in coma that are gone. In the case of
neurological death or brain death, certain important parts of brain
function have stopped and won't come back. So that's a
(10:44):
really important aspect of brain death. So there's been a
determination by neurologists that those brain functions that allow us
to be the people we think of as persons are
gone and will not return. The challenges. People lying in
bed on a ventilator who are diagnosed as being in
a coma look very much like somebody who's asleep, look
(11:07):
very much like someone who can be declared brain dead,
and so that's why it's really confusing for families to
distinguish somebody being asleep from somebody being brain dead or
in a coma, And so it relies on assessment by experts,
and so that's I think part of why this is
a really difficult concept both to understand just as interested people,
(11:30):
but also if you're a family member in a position
that's being told your loved one is not going to
wake up and it's time to remove life support and
to declare them dead.
Speaker 2 (11:41):
Yeah, so I could see how it's confusing So would
you say that the brain death definition was meant to
provide a kind of humane release for someone who's being
kept alive who might not want to under these circumstances,
and also for those families who won't get the love
on back and they need some kind of sense of closure.
Speaker 4 (12:00):
Yes, And I think it was meant to avoid what
felt like a very unacceptable outcome where a patient's body
could be kept alive for a very long time with
no possibility of their ever becoming aware of their surroundings. Again,
that they would never wake up, and that seems like
something that almost nobody would want to have happened to them.
(12:23):
And so it created a way for us to say,
this person is dead, just as if their heart stopped
beating and they stop breathing. This machine is what's keeping
them alive, but otherwise they're dead.
Speaker 3 (12:37):
And is not the only reason.
Speaker 4 (12:39):
Well, it turns out that there's a kind of secondary
effect of maintaining people on life support after they have
been declared brain dead. It makes it possible for their
organs to be donated for transplant in a way that
would not be possible if we waited for whole body death.
So when a person's heart stops speeding and stop breathing,
(13:00):
and they're declared that way, their organs are no longer
usable for transplant. But if an individual is declared brain dead,
their body can be maintained on a ventilator and their
organs can be collected and transplanted to numerous other people
to help save their lives. They go hand in hand.
It isn't that brain death was created as a concept
(13:23):
to allow organ donation and organ transplant, but they're very
closely related.
Speaker 2 (13:28):
But that's not the motivation as to why doctors declare
people brain dead.
Speaker 4 (13:31):
Right, And the decision to donate organs on the part
of the family is intentionally separated from the decision about
removing life support as a way of making sure that
the decision to declare somebody dead is not motivated by
the opportunity to collect their organs.
Speaker 2 (13:50):
Okay, that makes sense. So from what you've said so far,
it sounds to me like you're saying that brain death
was socially constructed and that it's something that was agreed
upon by experts for a reason.
Speaker 4 (14:02):
I think that's exactly the right way to characterize it.
If we have a way to keep a body alive
by this life support technology. We do need a societally
agreed upon social construct of what it means to die
by this other set of criteria, by neurological criteria, by
brain criteria. And so it is very widely accepted, and
(14:26):
every state in the United States accepts it, and it
is accepted by the expert community. There are some members
of society that do not accept it, mostly based on
religious belief that that kind of definition of death doesn't
count for them. The only death that counts this whole
body death. But that's a small subset of the American
(14:47):
and I would say world population.
Speaker 2 (14:49):
Okay, So given that brain death is a social construct,
I could understand why some people might find it harder
to accept this definition.
Speaker 4 (15:01):
It's true, and in particular, if you are from a
community that feels as if their views have not been
respected and represented, it's understandable that there would be suspicion
when people who don't look like you and don't seem
to represent your views and maybe your values show up
and say your loved one is dead. It's time to
(15:24):
remove this machine from them, even though they're warm and
breathing and their heart is still beating and they, as
I said before, look like they're asleep. And so it's
very understandable that this debate is happening at the bedside
sometimes between medical experts and the patient's families. And it's
(15:45):
I think very understandable that in a case like Jahai
make Maths, the family was not fully trusting of what
they were hearing from the people who were telling them
that their daughter was now dead. It, I think, to me,
unders wars the importance of explanation and trust and listening
and trying to make clear that the values that are
(16:09):
being expressed by the family are those that are being
respected by the institutions.
Speaker 2 (16:15):
Okay, thank you. That helps me make a lot more
sense of what's gone on in Jehia's case and how
there can be any ambiguity around whether someone's died or not.
So thanks so much for explaining that to us.
Speaker 4 (16:28):
Thanks for the good conversation today.
Speaker 2 (16:32):
We're going to take a short break. When we return,
we'll hear from a physician who studied the case of
Jehi macmath. He thinks his profession needs to better understand
the pain and mistrust grieving families feel.
Speaker 5 (16:46):
I could understand why people might not accept the diagnosis
of brain death, and also that it was a legitimate objection,
and I began to think about better ways that we
could talk about what brain death means.
Speaker 2 (16:59):
Playing God, godd will be right back. Jehi Macmath has
two death certificates, one in California when she was declared
brain dead and one in New Jersey, issued more than
(17:21):
four years later when her organs finally gave out. Once
the California hospital declared Jehai brain dead on December twelfth,
twenty thirteen, she could no longer be kept on life
support long term, but Jehai's family refused to let the
hospital end treatment. Jehai's mother told doctors that according to
(17:45):
her Christian faith, someone is alive as long as their
heart is beating, and life support was keeping Jahi's heart beating.
So Jehai's family transferred her to a care facility in
New Jersey, the only state in the US that had
allows people to opt out of death by brain criteria
even if the hospital or doctor doesn't support it. They
(18:07):
permit exceptions based on deeply held philosophical.
Speaker 3 (18:10):
Or religious views.
Speaker 2 (18:12):
Jehai was kept on life support for more than four years.
In that time, her body even went through puberty, but
eventually even the machines couldn't keep her organs functioning, so
on June twenty nine, twenty eighteen, New Jersey issued Jahai's
second death certificate. The fact that Jahi was issued to
(18:33):
death certificates is just one example of the gray area
created by brain death and how it can present problems.
Speaker 5 (18:41):
I think for any intensive care doctor, it's one of
the things that we hopefully take the most pride in
as being able to work with families who are going
through truly the most painful moments of their life. You know,
times they will never forget for as long as they live.
Speaker 2 (18:57):
This is Bob Drug. He's a professor of medical ethics
at Harvard. He's also an intensive care physician at Boston
Children's Hospital, and in that role he sometimes has to
deliver the news to families that their child isn't coming back,
that they're brain dead. His interest in the ethics of
brain death started back when he was a medical student.
(19:20):
He says, from the moment he first encountered the concept
of brain death, he felt like it didn't quite match
up to what he was seeing and how he thought
about what it means to be dead.
Speaker 5 (19:31):
We were told that you do these tests, you see
if the child's pupils react to light or they respond
to a painful stimulus, and you go through this battery
of tests, and if you do that and all the
tests come out negative, the patient is dead. It didn't
correspond to kind of what I'd always thought about death,
(19:52):
you know, having had grandparents die and things like that.
These patients did not look like what you would typically
think of as a head person. Their hearts were beating,
their skin was warm, they had pulses, their chest was
going up and down with breaths, all of those things
a brain dead person can do.
Speaker 2 (20:13):
He tried to talk about his reservations with his instructors
and classmates, but he says they shut him down.
Speaker 5 (20:20):
I met with a very strong dogma within the profession,
which is that this is simply death, as if there
should be obvious to anyone who looked at the situation.
Speaker 2 (20:33):
Over time, Bob grew more convinced that it's not obvious
that brain death is death. In twenty eighteen, he was
interviewed for the New Yorker article about Jehi Macmath. Bob
said that the disconnect between Jehi's family and her doctors
was understandable. Since then, Bob has continued to study and
(20:53):
write about the complex social issues surrounding brain death, and
he often uses Jahai's case as an example of how
things can go wrong. So I wanted to hear more
about what he thinks the problems are with the way
brain death is conceptualized.
Speaker 5 (21:10):
What brain death does is it says, if you are
permanently unconscious and have permanently lost the capacity for spontaneous respiration,
we consider you to be dead. You are legally dead.
Speaker 6 (21:26):
Now.
Speaker 5 (21:27):
The reason why this has largely been accepted, I think
by the American public and certainly most of the Western world,
has been that for many people, if they're never going
to wake up again and never going to breathe on
their own again, they'd go like, fine, you know, I mean,
this is my view. I am as good as dead,
(21:47):
and in fact, if my organs could help save the
life of somebody else when I'm in that condition, I
would like you to use them for that purpose. The
thing is we haven't been transparent about that. We haven't
said that that's exactly what we're doing. And I thought
that the alleged quote from Johi mcmaths, physician of what
is it you don't understand about death? She's dead dead
dead is kind of a way of trying to overcome
(22:12):
that lack of transparency.
Speaker 2 (22:14):
And so, if it is a social construct, would you
say then that it becomes understood differently by different people
who have different positions in society or experiences.
Speaker 5 (22:24):
Well, you know, I think that's actually a debatable point
because there's many social constructs that we don't give people
choices about. You know, the idea that you can't marry
more than one person. There's nothing biological about it that
says you can't, and yet we've all agreed in our
society that each person can only have one legal spouse.
(22:45):
There's all sorts of social constructs that we force on
people in our society, and legitimately that's so that we
can all live together peacefully. So it's absolutely it's a
social construct. But I also think there's a reasonable argument
for people who don't accept that social construct to at
least have the opportunity to express that view and perhaps
(23:07):
even have the right to reject that diagnosis if it's
not a social construct that they agree with.
Speaker 2 (23:15):
And so would you say it is accurates to say
in Jahi's case that the family were right in thinking
that she was still alive in terms of their understanding
of the word death, but then also simultaneously the doctors
were right to say she was dead.
Speaker 5 (23:34):
I'm a little bit reluctant to say one was right
or they both were right. I think the doctors were
wrong in dismissing the question why is she dead? Were
they behaving in the way that they had been trained,
the way that I had been trained? Yes, they were,
but that doesn't make it right.
Speaker 2 (23:53):
Do you feel that there's an alternative framework to brain
death that you think might be more ethical or less
ambiguit Yes.
Speaker 5 (24:01):
My preferred choice is to define death the way that
it has actually been diagnosed for the last forty years,
which is, if we determine that you're permanently unconscious and
have permanently lost the capacity for spontaneous respiration, you are
legally dead, and that allows patients to donate organs and
(24:22):
organs to be procured without violating the dead donor rule.
But I also believe that we should allow patients to
opt out of that diagnosis, since it's not the same
as biological death, and many people either on the basis
of their religious beliefs or personal convictions. Don't believe that
you're really dead until after you're biologically dead. People who
(24:45):
felt strongly about it could document that in their medical
record at any point in their life and it would
be respected. But I think in most cases it does
come down to the family saying, for example, we're Orthodox
Jewish and it's against our religion, or we're Buddhist and
it's against our religion, or I just know that Uncle
Joe would never agree with being diagnosed as dead this way,
(25:06):
and I think all of those ways would count.
Speaker 2 (25:09):
So could you talk a bit about what problems that
creates more broadly.
Speaker 5 (25:15):
Well, more broadly, we do have a shortage of ICU
beds and doctors and nurses, and you want those resources
to be devoted towards people who are going to recover,
go out of the ICU and go on to live
a life, and in brain death, that's not the case.
That diagnosis really kind of solves a rationing problem in
(25:37):
the ICU. And one of the questions going forward is
that if patients have a right to refuse to accept
the diagnosis of brain death, does that mean that our
ICUs are suddenly going to become overflowing, and I think
to a certain extent that's an unknown question. But we
do have the experience from New Jersey because patients have
been able to opt out of the diagnosis in New
(25:59):
Jersey now for over thirty years. To my knowledge, I
see you, utilization really has been just pretty much normal
in New Jersey.
Speaker 2 (26:07):
And with your preferred way, would that framework have helped
in the Jehi Macmath case.
Speaker 5 (26:15):
Yes, it would have. I think McMath's family would have
been told that they did not have to accept the
determination of death by neurological criteria.
Speaker 2 (26:25):
So could you tell us what experts like bioethesis and
neurologists are doing to attempt to update the brain death definition.
Speaker 5 (26:34):
So the Johih Macmath case and many of the others
like it have led to many lawsuits of families objecting
to the determination of death by neurological criteria, and out
of that there was a movement to think about revising
the Uniform Determination of Death Act that had been adopted
in nineteen eighty one. The group that would do that
(26:58):
is called the Uniform Law Commission. So that committee has
now been meeting for over two years, and there are
some who say that the current definition has worked well enough,
others who like myself, believe that the law needs to
be more transparent than it is. The other big aspect
that's under discussion is whether patients or families should be
(27:20):
allowed to opt out of the diagnosis.
Speaker 2 (27:23):
And if there was to be a kind of a
major change in the definition of death, do you think
that that it would have an impact on organ donation.
Speaker 5 (27:32):
One of the concerns of that line of reasoning would
be that if the Uniform Law Commission were to go
in that direction, that there could be states who would
say that brain death is not actually a way of
diagnosing death, it's only a way of diagnosing a severe
brain injury, and that it would be wrong to remove
life support from these patients or to procure their organs
(27:53):
for transplantation. One of the concerns that people might have
then is that some states could in turn a revised
Uniform Determination of Death Act in a way that would
make it illegal or impermissible to procure organs from patients
who are declared brain dead, and that could then have
(28:14):
ripple effects in terms of the availability of transplantable organs.
I mean, it would be a frigging nightmare and I'm
hoping that both the Uniform Law Commission and our society
can come to the sorts of agreements that will allow
what I believe to be reasonable decisions by patients and
families to donate their organs, and for us to be
(28:35):
able to use those organs to save the lives of others.
Speaker 2 (28:38):
Going back to Jehi's case, there was so much mistrust
between Jehi's family and her doctor's, understandably, and it seems
to me that the greater transparency that you're pushing for
could help repair some of the distrust between doctors and patients,
specifically when it comes to discussing concepts like brain death.
Is that fair to say?
Speaker 5 (28:57):
I think you know, trust is easy to lose but
very hard to regain. And we've seen, you know, as
we've sadly gone through the pandemic and the lack of
trust the public has in the medical profession about the
efficacy of vaccines and things like this. Brain death just
adds to that list. But there's never ever been a
recorded case of somebody who's been correctly diagnosed as braindead
(29:19):
who's ever recovered consciousness.
Speaker 2 (29:22):
Well, thank you, Bob so much for giving me the
time to ask you all these questions. It's been really fascinating.
Speaker 5 (29:29):
Well actually very grateful that you're talking about these issues.
They're very interesting to me obviously, but hopefully they're interesting
to your listeners. And I also think they're like really
important questions for us to be thinking about and grappling with.
Speaker 2 (29:42):
We've heard a lot in this episode about how complicated
brain death really is and how in the end, it's
really a social construct. Bioethicist Yolanda Wilson says, if the
medical establishment wants people to accept a social construct like
brain death, then they have to wor kada to un
not trust.
Speaker 1 (30:02):
The minute of highs. Grandmother said, hey, something is going wrong.
The position could have come in and wielder back to
surgery right away, and the outcome still may have been
what it was. But I think it adds unnecessary grief
and burden and distress to the family when they know
(30:22):
that they have reported things and that they have put
their trust in you, and to not have that respected
and then to demand that the family trust and believe
what you're reporting to them after the fact takes a
level of audacity that had I right, I don't have
(30:47):
access to that level of audacity in My Life.
Speaker 2 (30:51):
Landa says trust needs to be as stibblished from the
very beginning, starting with something as basic as how physicians
communicate with patients.
Speaker 1 (31:00):
At every level. There has to be a kind of
basic human decency and respect with which patients are greeted
from the initial entry point and treated throughout. This idea
of just kind of basic act of listening. Right, those
kinds of things can establish trust. And I think doctors
(31:21):
in particular are really bad with thinking that they know things.
And certainly there are certain expertise, there's absolute expertise that
one gains in medical school. But medical knowledge isn't knowledge
in all forms, across all domains, for all time.
Speaker 2 (31:46):
Next time, on playing God, a thirty nine year old
woman is rushed to hospital in need of urgent medical treatment.
Her doctors tell her family that they know how to
save her life, but according to that policies, they won't
treat her, not for six months. So what's behind the
so called six month rule for liver transplants and how
(32:10):
is it ethical? We'll hear from a Johns Hopkins transplant
surgeon who says that this widespread practice is based on stigma,
not science, and he is not standing for it.
Speaker 6 (32:22):
Transplant centers. As they see that good results are possible,
We'll go for it, and they'll they'll take a chance
and do the transplant, and they'll realize, holy cow, we
almost let that wonderful person die. Thank God we made
the right decision and gave him a second chance.
Speaker 2 (32:45):
Big thanks to our guests in this episode, Yolanda Wilson
and Bob Drug. Playing God is a co production of
Pushkin Industries and the Johns Hopkins Berman Institute of Bioethics.
Emily Bourne is our lead producer. This episode was also
produced by Sophie Crane and Lucy Sullivan.
Speaker 3 (33:07):
Our editors are.
Speaker 2 (33:08):
Karen Chakerjee and Kate Parkinson Morgan Deem. Music and mixing
by Echo Mountain Engineering support from Sarah Bruguerre and Amanda Kawan.
Show art by Sean Krney, fact checking by David jar
and Arthur Gompertz. Our executive producer is Justine Lang at
(33:29):
the Johns Hopkins Berman Institute of Bioethics. Our executive producers
are Jeffrey Kahan and Anna Mastriani, working with Amelia Hood.
Funding provided by the Greenwall Foundation. I'm Laurena Rura Hutchinson.
Come back next week for more Playing God. Has this
(33:54):
show inspired you? Are you interested in studying bioethics, Perhaps
you want to become one shaping this field. We have
a Master of Bioethics program at the Johns Hopkins Berman
Institute of Bioethics. To find out more, visit Bioethics dot
Jhu dot edu. Forward slash MBE scholarships are available
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