Feb 19, 2014
Transcript
[RADIOLAB INTRO]
JAD ABUMRAD: Hey, I'm Jad Abumrad.
ROBERT KRULWICH: I'm Robert Krulwich.
JAD: This is Radiolab. And today,
ROBERT: Today's show, stories. Today's show;
JAD: Is,
ROBERT: Is,
JAD: Will be.
ROBERT: Stories are, today's show stories are?
JAD: Today's show.
ROBERT: Are,
JAD: Semicolon, no, colon.
ROBERT: Story, I see, I see.
JAD: Today's show, colon,
ROBERT: He's recognized.
JAD: Hey, I'm Jad Abumrad.
ROBERT: I'm Robert Krulwich.
JAD: This is RadioLab, and today,
ROBERT: Today's show, is stories about reckoning with death.
JAD: Yeah, trying to beat it or to cheat it.
JAD: And maybe hardest of all because we're gonna have to do this one day all of us
ROBERT: Grieve it.
JAD: Yeah.
ROBERT: Or at least except that it's going to happen.
JAD: Exactly. Now first up, a story about death incarnate. Incarnate?
ROBERT: Incarnate, I think.
TIM HOWARD: I think incarnate.
ROBERT: Incarnate, that was Tim our producer.
TIM: Oh, I'm sorry, am I not in here yet?
ROBERT: No, you're not supposed to be here yet, you wait.
JAD: A story about death incarnate.
ROBERT: And a man who, you know, he thought he could beat death.
[knocking sound]
TIM: Are you Ann?
ANN GIESE: Yeah.
JAD: This comes from our producer Tim. But you're already here. So just start.
TIM: Okay. So late last year, I took a trip out to Wisconsin.
ANN GIESE: Test, one, two.
TIM: It was like that first weekend of November when we were out there for the, for the live show. And I met this woman.
ANN GIESE: Ann Giese.
TIM: To talk about her daughter, Jeanna.
TIM: Do you want to tell me just like where you're sitting?
TIM: Crazy story.
ANN GIESE: I am sitting in the kitchen of my home in Fond du Lac, Wisconsin.
TIM: Alright.
TIM: So anyway, back in 2004, in September of 2004, her daughter Jeanna was 15, sophomore.
ANN GIESE: I remember it was homecoming week, so they had all activities each day and dress up days, and…
TIM: Jeanna is a volleyball player. And one morning, she just starts to feel kind of crappy.
ANN GIESE: She started getting a tingling in her left arm. We thought maybe she had a pinched nerve or something. Thought nothing of it.
TIM: Then she goes to a volleyball game. Somebody I guess sets the ball to her to spike and she looks up and she sees two of them. And she doesn't know which is the volleyball.
ROBERT: Double vision?
TIM: Yeah.
ANN GIESE: About a week later, she started getting flu-like symptoms.
TIM: She has headaches, she feels really sluggish.
ANN GIESE: And each day she just got more tired.
TIM: One of those days she does go to school, take the P-SATs, but then the next day she can't even get out of bed. They go to the doctor and he says,
ANN GIESE: Well ...
TIM: It's not the flu.
ANN GIESE: So we went home and then she just kept getting worse. Her arm started to involuntarily jerk. Her speech started becoming real slurred. She, her body kind of stiffened up like I'd get her up to go to the bathroom. And she just, just it was just really scary, weird, how her body was just stiffening up.
TIM: Ann, and her husband John, took her to a neurologist for some tests.
ANN GIESE: Just trying to get down to the bottom of this, you know, and what is going on with her! Because the meningitis came back negative. Everything else that we're testing for came back negative.
TIM: Were they running out of things to test for?
ANN GIESE: Yeah, they pretty much didn't know what else to do. And…
TIM: A day later on a Saturday, Jeanna's hospitalized. And then on Monday, when her pediatrician who had seen her on Friday came in and saw her.
ANN GIESE: And saw how much worse she was.
TIM: In just two days.
ANN GIESE: He was like, frazzled, like what is going on here. And then something just made me tell him about the bat.
JAD: Bat?
TIM: Yeah, so this was a month earlier, Jeanna and her family, they were at mass.
ANN GIESE: It was St. Patrick's Catholic Church, you know, very old, big church.
TIM: And a bat was flying around and it was just kind of bothering everybody.
ANN GIESE: It would just like land on, behind the altar of the stained glass windows up high. And it would swoop down and it started getting lower to the people's heads and stuff. And there was an usher he hit it to the floor. I don't know what he used. But Jeanna kept looking back at it and being the animal lover she is she thought she had to help it.
TIM: And so she jumps up, runs over to the bat, grabs it by the wings and takes it outside. And as she does the bat bites her on the index finger of her left hand.
ROBERT: So it breaks the skin?
TIM: Yeah, they washed it, and then thought nothing of it. But when Ann told the pediatrician about this.
ANN GIESE: He, his face turned white. He walked out of that room, he says, ‘I'll be right back.' But he never told us what it was.
TIM: They immediately rushed her to Milwaukee to this other hospital.
RODNEY WILLOUGHBY: Children's Hospital Wisconsin
TIM: To be treated by this guy.
RODNEY WILLOUGHBY: I'm Rodney Willoughby. I'm an infectious disease consultant.
TIM: And at the point when Rodney met Jeanna.
RODNEY WILLOUGHBY: She was what we call stuporous.
JAD: You mean like she couldn't talk?
TIM: She could but barely.
RODNEY WILLOUGHBY: She was talking only single sentences, could only follow one step commands.
TIM: She was in a wheelchair.
RODNEY WILLOUGHBY: Because she couldn't physically stand.
TIM: Her left arm with twitch and spasms.
RODNEY WILLOUGHBY: She would apologize, say sorry, and then try and get back into position for the exam.
TIM: And she was literally getting worse by the minute.
RODNEY WILLOUGHBY: Within two or three hours. She had to have a breathing to put in. She was essentially becoming comatose, the way she looked I wasn't sure if she was going to survive. And of course, if she had rabies, I pretty much knew she wasn't going to survive.
JAD: Rabies?
TIM: Yeah.
ROBERT: But if you—if you are diagnosed with rabies, then what happened? What do you do?
TIM: Uhm, you die, basically.
ROBERT: You die?
TIM: Yeah.
ROBERT: Well, like what? All of the time some of the time?
TIM: All of the time.
MONICA MURPHY: It's a really deadly disease.
BILL WASIK: In terms of the percentage of people who come down with the symptoms of rabies, who die, it is the deadliest disease in the world.
JAD: The deadliest?
TIM: Yeah. Here's the bottom line.
MONICA MURPHY: If we say there are 55,000 cases of rabies a year, then you also have 55,000 rabies deaths a year.
BILL WASIK: Meaning it's 100% fatal.
TIM: Yeah. And by the way, this is Monica.
MONICA MURPHY: Monica Murphy. I'm a public health veterinarian.
TIM: And this is Bill
BILL WASIK: Bill Wasik. I'm a senior editor at Wired Magazine.
TIM: And they wrote a book called ‘Rabid', where they trace the history of rabies all the way back to the beginning.
BILL WASIK: There are references to rabies going back as far as we have human writing in the Sumerian literature in the Akkadian literatures.
TIM: For thousands of years, we have been throwing everything and anything we can think of at this disease, and failing.
BILL WASIK: I mean one like, real ...
TIM: I mean, from the start ...
BILL WASIK: ... you see these very, very, weird cures.
TIM: Desperate, for example, in Roman and Greek times if you're a Jeanna and you got bit by a bat, you might have tried.
BILL WASIK: Eating a cocks brain, goose grease mixed with honey, the flesh of a mad dogs, salted. The skin, or old slough of a serpent, a clod from a Swallows Nest applied with vinegar, and then we have the dung of red poultry, provided it is a red color, is very useful. If those didn't work. You could pull out the feathers from around the live roosters anus and apply the anus to the bite wounds on the theory that said anus would suck the poison up out of the wound.
JAD: Wait a second! How would a rooster's anus cure ever catch on in the first place? I mean, it wouldn't work?
TIM: Well, Yeah.But if you think about it, not every rabid dog or bat bite is actually going to transfer the virus.
BILL WASIK: In the sense that you know the saliva just will fail to get the virus where it needs to be.
TIM: So every so often a healer is going to come along with his rooster's anus and, you know, put it on your wound.
BILL WASIK: And sure enough, it works. Case closed, we have our rabies cure.
ROBERT: So you're saying that applying this list is a lot of lucky accidents by sorcerers?
TIM: Yeah, I think that lucky accidents were kind of probably what kept some of these things kicking around long enough to become accepted.
JAD: What do we know about rabies for real and what do we actually know about the disease?
TIM: I mean, not much. We know it's a very unusual virus.
MONICA MURPHY: Yeah. The way a typical virus travels is it has a port of entry. It replicates locally, it makes it into the bloodstream, it circulates widely, it finds its target tissues and then it replicates.
BILL WASIK: Right, exactly.
TIM: So you get a wound it gets infected that goes into the blood. But rabies…
MONICA MURPHY: It enters the body at the bite wound site.
TIM: Say in Jeanna's case, the tip of her finger.
MONICA MURPHY: It binds to a nerve right there.
BILL WASIK: To a particular receptor.
MONICA MURPHY: And then crawls its way up the nervous system.
BILL WASIK: One to two centimeters per day.
MONICA MURPHY: I think that's right, to attack the brain.
JAD: It literally grabs onto the nerve and climbs up?
TIM: It's like hand over hand might take a few days for the length of a finger, maybe three weeks to go the length of an entire arm.
MONICA MURPHY: It's during that slow climb, that we can administer the vaccine and help the body mount an immune response.
TIM: If you give a person the vaccine before they see symptoms while the virus is still climbing its way up to the brain, they should be okay.
BILL WASIK: But once the infection has taken root in the brain, then it's too late for vaccination.
TIM: The moment you have a twitchy finger, the moment you have, like, the slightest little flu-like symptom which will later progress into rabies, that's the moment that you know you're going to die of that disease.
JAD: What does the virus do when It gets to the brain?
TIM: Well, it's very much not known. Specifically what happens in the brain. It might start shutting parts of your brain down. In about 30 percent of the cases, the muscles might start to kind of get paralyzed, that's called paralytic rabies. Eventually, their entire body will get paralyzed, and they might just slump into a coma. Or more often, it's that cliche of the rabies death is what actually happens, where people have these, like, spasms of rage.
[woman screaming]
TIM: There are videos online, where you can see people in this state.
MONICA MURPHY: Yeah, YouTube.
BILL WASIK: I find them impossible to watch.
[woman screaming]
TIM: People, you know, just screaming and writhing and convulsions. From the virus's perspective, it's trying to drive its host to be more aggressive so that it bites somebody else and spreads more virus. The other thing that I find really perverse is that they will get this fear of water, a really powerful fear of water.
MONICA MURPHY: The human victim of rabies tries to drink, wants to drink.
BILL WASIK: But then they'll bring the cup to their hands and it'll shake and overflow. The muscles in their throat seize up.
MONICA MURPHY: A gag reflex.
BILL WASIK: And they can't.
JAD: They can't drink water?
MONICA MURPHY: Yeah, you can imagine though, again, from the virus's perspective, why that would be advantageous. You are trying to transmit virus through biting. So an animal who can't swallow his virus filled saliva…
TIM: They're gonna be like a loaded gun.
MONICA MURPHY: Right.
TIM: And eventually, after a few days, in these late stages, a person might lapse into a coma, have a heart attack, there's really any number of ways they could die.
JAD: That sounds awful.
JOHN GIESE: And it was a, it was ...
TIM: So when the official results came back and Rodney took Jeanna's mom and dad, Ann and John Giese, into a room and told them.
ANN GIESE: We're sorry, but she has rabies.
RODNEY WILLOUGHBY: And it's definitely too late for the vaccine.
ANN GIESE: John and I both started crying. You know, is there anything that can be done? And one of the doctors said, ‘there's nothing we can do. You can either put her in a dark room and let her die. You can take her home and let her die.' And we're just this can't be happening.
RODNEY WILLOUGHBY: They said, ‘What else do you got?' Said well, we can do standard intensive care. ‘Well, does that work?' Well, no. ‘What else do you have?'
ANN GIESE: And then Dr. Willoughby said.
RODNEY WILLOUGHBY: Okay, well.
ANN GIESE: Well, I do have an idea. I'd like to try this, I don't even know what he called it.
TIM: Okay, so the night before, while they were waiting for the test results, hoping it wasn't rabies, Rodney started calling around.
RODNEY WILLOUGHBY: You know, I actually called the CDC asking if there's anything that was unpublished but promising?
TIM:They say no.
RODNEY WILLOUGHBY: And then I essentially headed to the library. And what I did is I pulled, I don't know, about 20 years worth of case reports.
TIM: Started reading.
RODNEY WILLOUGHBY: Sounded pretty hopeless, but ...
TIM: But he does notice one thing. He sees mentioned in this one kind of obscure paper ...
RODNEY WILLOUGHBY: I read one article is said well, this might be the sort of neurotransmitter.
TIM: ... that maybe what's happening in the brain during rabies is something called excitotoxicity.
ROBERT: Excito..?
TIM: Excitotoxicity
ROBERT: Excitotoxicity.
TIM: Yeah, sounds exciting, and maybe toxic.
JAD: What is it?
MONICA MURPHY: Well, excitotoxicity., and this is—this is tricky stuff, and it's controversial.
TIM: And yeah, this is the kind of thing that actually makes rabies researchers at conferences get into fights with each other.
JAD: [laughs]
TIM: Here's the basic idea. You might think that a brain infection just physically destroys the brain.
JAD: Yeah.
TIM: But under this theory, the brain isn't physically destroyed. It's just that the neurons themselves are getting overstimulated, overexcited, and then that part of the brain is disrupted, and it all just kind of shuts down.
MONICA MURPHY: Just making it impossible for the brain to function properly. And so the sort of life sustaining functions of the brain, like.
BILL WASIK: Breathing and you know, circulating blood.
TIM: They stop working, because the neurons that control them are just overwhelmed.
MONICA MURPHY: Right.
TIM: In other words,
BILL WASIK: Rabies doesn't destroy the brain, it disrupts the brain.
MONICA MURPHY: The brain itself is spared.
JAD: So it's like a software problem, not a hardware problem.
TIM: Yeah. And what Rodney read is that people had died of rabies. And in the autopsy, their brains looked totally fine.
RODNEY WILLOUGHBY: Entirely normal.
TIM: Moreover ...
RODNEY WILLOUGHBY: The virus was gone.
TIM: You couldn't even detect the rabies virus in their brain.
RODNEY WILLOUGHBY: Brain no longer had rabies in it.
JAD: Really?
TIM: Yeah. It was like there was no weapon at the scene of the crime.
RODNEY WILLOUGHBY: So that was my clue.
TIM: What that suggested to Rodney is that the immune system does eventually turn on.
RODNEY WILLOUGHBY: Right.
TIM: And it kicks in.
ROBERT: Oh
TIM: And IT starts fighting the disease. But it just gets there too late.
RODNEY WILLOUGHBY: So the immune system had all the tools, but essentially, this virus, beat your immune system to the punch, it would kill you faster than your immune response could eradicate it.
ROBERT: Because the virus moves what more quickly than the immune system?
TIM: Way faster.
RODNEY WILLOUGHBY: And to me was like, well, you know, the solution there is obvious.
TIM: If you could buy Jeanna's immune system some time.
RODNEY WILLOUGHBY: Enough time, you could clear the brain and the brain would not be damaged.
TIM: might survive. So what he suggests to Ann is that he put Jeanna into a coma.
RODNEY WILLOUGHBY: Put her into a coma.
MONICA MURPHY: Induce a coma. And if an anesthesiologist is controlling routine brainstem activities, like ...
TIM: Breathing, circulation ...
MONICA MURPHY: Then ...
TIM: No matter what the virus is actually doing inside her brain, he might be able to keep her alive.
RODNEY WILLOUGHBY: Long enough for the immune system to make a response, which would take normally about seven to ten days.
TIM: And this is still kind of a guess?
RODNEY WILLOUGHBY: This is entirely improvised, yeah. And lots of things can go wrong. And when they go wrong, they typically go wrong badly.
TIM: He knows there's a huge risk that she's going to end up being brain dead, or maybe locked in.
RODNEY WILLOUGHBY: That's worse than death. I think in everybody's eyes.
TIM: Were you nervous about the possibility, like he said, she could end up being a vegetable? just like she…
ANN GIESE: I don't… I don't think I thought that far ahead. I thought more of, let's just keep her alive. Get the disease out of her.
TIM: So they put Jeanna into a coma. Rodney figures we'll give her a week. And then we'll check to see if she has an immune response.
ANN GIESE: And once they had her hooked up, with the coma, she had the pole with all the IV stuff on and the different medications and stuff, and…
TIM: Ann stays with Jeanna in the hospital room and spends her time…
ANN GIESE: Praying and calling people and asking them to pray.
TIM: And she repeated this one prayer.
ANN GIESE: Psalm 91.
TIM: Over and over again.
ANN GIESE: It talks about, you know, basically the devil not getting a hold of you.
TIM: He is my refuge and my fortress, my God, in whom I trust. Surely he will save you from the Fowler's snare and from the deadly pestilence.
RODNEY WILLOUGHBY: And so we were just waiting…
TIM: He will cover you with his feathers..
RODNEY WILLOUGHBY: Waiting…
TIM: And under his wings, you will find refuge.
RODNEY WILLOUGHBY: It was probably the most uncomfortable feeling I've ever had in medicine.
TIM: Seven days in they sample her spinal fluid, send it in for testing. And then they get the results which say…
RODNEY WILLOUGHBY: Her antibody response is in and going up.
TIM: So her immune system is working?
RODNEY WILLOUGHBY: Yeah, it was working and in fact, we now had a rabies antibody and we had a fair amount of it. And it was in the spinal fluid that is meaning it was around the brain. And so essentially the plan worked. So we said well, okay, let's start waking her up.
TIM: But as they're waking her up, she has a fever.
ANN GIESE: And they couldn't figure out what was causing the fever.
TIM: So they put her back under for another week. And then finally, they start to wake her up again.
ANN GIESE: And she gradually woke up.
RODNEY WILLOUGHBY: Relatively looked great. And she had nice pupils, but physically, she did not move a muscle.
TIM: They pinch her, they poke her
RODNEY WILLOUGHBY: She had no movement anywhere other than her pupils.
TIM: So, so she was responding to light?
RODNEY WILLOUGHBY: light. That's it.
TIM: And this was the one thing that Rodney was most afraid of, that Jeanna was…
RODNEY WILLOUGHBY: A lock-in. So she's locked inside this box of a body. And it was the worst day of my life. Because it looked like she would probably going to survive and we actually done worse than death.
TIM: And as Rodney drove back and forth from work, kept repeating this one prayer.
RODNEY WILLOUGHBY: Jesus Christ, son of God have mercy on me a poor sinner. Jesus Christ, son of God have mercy on me a poor sinner. Jesus Christ, son of God have mercy on me a poor sinner. And then about two days later.
TIM: Rodney is in the hospital. He's looking over Jeanna's charts.
RODNEY WILLOUGHBY: Yeah, just checking her exam.
TIM: And another doctor was finishing up her shift and she comes over to Rodney.
RODNEY WILLOUGHBY: And she said, ‘oh, did you know that she had reflexes today?' And I said no.
TIM: Rodney grabs a reflex hammer.
RODNEY WILLOUGHBY: And then sure enough, she had knee reflexes.
TIM: Next day,
RODNEY WILLOUGHBY: Her eyes started fluttering a little bit.
TIM: Within a week ...
ANN GIESE: She was back.
JEANNA GIESE: For a couple of weeks after I woke up I still have no memory.
TIM: This is Jeanna Giese, the first person to survive rabies without the vaccine.
JEANNA GIESE: My first memory was actually Thanksgiving Day.
TIM: A couple of weeks after she woke up from the coma.
JEANNA GIESE: Back in 2004. I just remember being with my family and playing board games with my brothers and then just them being there and then going down to the cafeteria for dinner, and having fish. I remember we had fish.
JAD: How long was she in the hospital for?
TIM: About two months.
JEANNA GIESE: I had to learn how to stand and then to walk and turn around, move my toes. I was really, after rabies, you know, a newborn baby, who couldn't do anything. And then I had to relearn that all.
TIM: Do you remember that? Do you remember that feeling?
JEANNA GIESE: Yeah, I, mentally I was there. You know, mentally I knew how to do stuff. But my body wouldn't cooperate with what I wanted to do. And it was frustrating. And it definitely took a toll on me psychologically. You know, I'm still recovering. I'm not completely back.
TIM: She can't play volleyball anymore. But she finished high school, went to college.
JEANNA GIESE: I graduated with a degree in, just, general biology.
TIM: And now Jeanna is really into bats.
ROBERT: She's a bat lover.
TIM: Yeah!
JEANNA GIESE: If I ever go down to the zoo, you know, they always they let me go behind and in with the bats and I can pet em and stuff.
TIM: Really?
JEANNA GIESE: Yeah, I'll feed them. I'll pet em. I've been going to bat festivals here in Wisconsin. So I've no fear of bats.
JAD: That would be the last person I would expect to go to a bat festival.
ROBERT: Oh, this girl is a saint! That's all.
TIM: She is the poster child for what became known as the Milwaukee protocol.
JAD: That's the name of Rodney's thing that he did with her?
ROBERT: Yeah, I mean, this has been tried again?
TIM: This has been tried all around the world by different people and different versions of it. But it's been tried around 30 times.
ROBERT: With what result?
TIM: So everything I'm about to say forward, there's debate about every single little bit of it, but he says five survivors.
ROBERT: Five survivors.
TIM: Yeah.
ROBERT: Out of how many people?
TIM: Out of about 30 people, which on the one hand is that seems like a terrible, you know, percentage for a treatment for a disease five out of 30. But on the other hand, this is rabies. And you know, for all of human history, it was zero out of 30.
ROBERT: Was there anything about the five that separates them from the others?
TIM: Well, this brings us to the really murky territory.
AMY GILBERT: You know rabies has been one of those just really interesting pathogens to me, the more you think you know about it, the more you don't know about it.
TIM: This is Amy.
AMY GILBERT: Dr. Amy Gilbert. I'm a research biologist at the National Wildlife Research Center here in Fort Collins.
TIM: So this gets to your question, Robert, a couple years ago, Amy actually went to study rabies in Peru with this guy.
SERGIO RECUENCO: I am Sergio Recuenco, I am a physician by profession.
TIM: Just so happens Sergio is also from Peru.
SERGIO RECUENCO: I was born in Lima.
TIM: And he now works as an epidemiologist at the CDC.
SERGIO RECUENCO: So going to…
TIM: But in 2010 they traveled deep into the Amazon jungle.
SERGIO RECUENCO: First in Lima, we'll have to travel to Tarapoto and from Tarapoto we'll go…
TIM: And we're talking remote
SERGIO RECUENCO: From Lima to San Lorenzo.
JAD: What are they looking for?
TIM: Well, they were studying bat-borne diseases. And in that part of the world, people have a lot of contact with vampire bats.
SERGIO RECUENCO: So we choose two towns.
AMY GILBERT: Saracocha and Santa Martha.
TIM: So they arrive and go door to door.
AMY GILBERT: Household to household.
SERGIO RECUENCO: We visit each house and talk with one member of the family.
TIM: And they're asked, you know, ‘have you been hit by a vampire bat? Have you had any illnesses?' Then they take a blood sample. And what they found is basically rabies-front-page-news.
AMY GILBERT: Eleven percent of the blood samples that were tested ...
TIM: Seven people out of 63.
AMY GILBERT: ... had what we call evidence of virus-neutralizing antibodies.
TIM: They had rabies antibodies in their blood.
JAD: Ah, Okay?
TIM: Well you know how I mentioned that sometimes the body will mount a response to rabies, but it's just too late.
JAD: Yeah.
TIM: So you might see those antibodies, but only when somebody's dying. Right.
JAD: Right.
TIM: And these people in Peru, they had the antibodies.
SERGIO RECUENCO: But we didn't have any evidence there was any neurological disease in any of the cases.
TIM: They didn't seem to have rabies.
SERGIO RECUENCO: We were really very surprised.
JAD: I'm sorry. Why?
TIM: Well, think about it, the only way they could have gotten those antibodies in their blood was
SERGIO RECUENCO: By contact in some point with the virus.
TIM: They'd come into contact with rabies, and yet they were fine.
JAD: Ah!
TIM: It was almost as if they were immune to rabies.
JAD: Huh!
AMY GILBERT: Well, I…
TIM: But Amy won't use that word, immune, because…
AMY GILBERT: The data are sort of inconclusive as to whether there was any entry into the brain.
TIM: Like they didn't know if the virus made it all the way into these people's brains. And so did they come down with full-blown rabies or not? They don't know. But it's possible that these people are special. Some people even argue…
AMY GILBERT: That there are special individuals who are able to survive rabies.
TIM: And not just in Peru, Monica told me about another case.
MONICA MURPHY: The Texas wild child rabies case, laboratory-confirmed, in a girl in Texas.
TIM: 17-year-old girl.
MONICA MURPHY: a runaway.
TIM: She shows up in 2009 at a hospital in Houston. She has a headache, her neck hurts, and she's really agitated. They confirmed that it was rabies, but she…
MONICA MURPHY: Didn't receive the Milwaukee protocol or any critical care measures.
TIM: As far as we know, they just figured she would die. But then three weeks later, this girl…
MONICA MURPHY: Went on to walk out of the hospital.
TIM: She just got better.
JAD: No drugs? No coma? No nothing? On her own.
TIM: And this actually brings us back to Jeanna, because at the point when she arrived at the hospital to see Rodney.
RODNEY WILLOUGHBY: She actually was diagnosed as having small amounts of antibody in her…
TIM: She already had antibody in her blood like those people in Peru.
MONICA MURPHY: She did not have recoverable virus.
RODNEY WILLOUGHBY: We could not isolate virus from her, which is unusual.
MONICA MURPHY: It does seem that she is immunologically special.
TIM: In fact, if you look at all the people who have gotten the Milwaukee protocol and survived, they all have that profile.
MONICA MURPHY: Like the girl in Texas, like Precious Reynolds.
TIM: That's another girl who got the Milwaukee protocol and survived.
MONICA MURPHY: They have had similar labwork comeback, though those patients, you know, have extraordinary labwork, and extraordinary outcomes.
TIM: And so some researchers in Canada and Thailand have argued that Rodney's protocol actually had very little, if nothing, to do with Jeanna Giese surviving. They would say she survived.
MONICA MURPHY: Despite Dr Willoughby's treatment rather than because of Dr. Willoughby's treatment.
JAD: Oh, so they're accusing him of basically pulling a roosters anus kind of number?
TIM: I don't think they would, you know, really put it that way.
JAD: [laughs]
TIM: Exactly. They say that the Milwaukee protocol should be discontinued, and that we shouldn't be wasting time and money on it.
MONICA MURPHY: You know, they in Bangkok are acutely aware of the fact that to do one Milwaukee protocol case you could vaccinate I think it was all the kids in Bangkok preventatively against rabies.
BILL WASIK: Tens of thousands of slum kids in Bangkok could be preventatively vaccinated against rabies.
TIM: So these critics would say, you know, give people a vaccine, but don't induce a coma and don't use these untested drugs that Rodney administers. And if somebody comes in with an advanced case of rabies, well, unless you have evidence that they're one of these immunologically special people, you just need to accept the fact that they're going to die.
SERGIO RECUENCO: I think, no! Calling not to do anything, I will definitely disagree. We'll have to do something.
TIM: According to Sergio, the idea that Rodney somehow just got incredibly lucky when he was treating Jeanna Giese.
SERGIO RECUENCO: That's very unlikely.
TIM: Jeanna was basically at death's door.
SERGIO RECUENCO: There are some things we might not be fully understanding, you know, in this case. But it was obvious that if she was not given this alternative she might not have survived.
TIM: And you could argue that if Jeanna is part of this immunologically special group of people who can just survive rabies without the vaccine, then how come nobody did before Rodney came along?
RODNEY WILLOUGHBY: You know this is really not science, this is right now storytelling. There is something right. But we still don't know. And we won't know until we figure out which parts work and don't work.
TIM: You know, for now, Rodney is forced to evaluate and try to improve the protocol, just one patient at a time. Without the funding of research that he wants. So, you know, no clinical trials, no animal models.
RODNEY WILLOUGHBY: So we're left learning the hard way, which is an awful way to learn.
TIM: Whatever the case, you've actually got to be glad that Rodney gave Jeanna a shot. Because whether or not you think that he saved her life or she saved her own life. The fact is that, at least now we know that rabies isn't quite the killer that we once thought it was.
BILL WASIK: He took it off of its throne of death. Even if you know just a little bit maybe.
MONICA MURPHY: And when we say you know rabies is coming off it's a 100% throne, it's, you know, down to 99.999.
BILL WASIK: You know, like it might be that it was never quite on that throne.
MONICA MURPHY: Yeah.
BILL WASIK: Exactly.
MONICA MURPHY: Yeah.
BILL WASIK: Ever.
MONICA MURPHY: Right.
JAD: All right, well, we've certainly cleared things up. Thank you, Tim.
TIM: Thank you.
JAD: Sure thing.
[LISTENER: Hi, this is Claire calling from Beijing. Radiolab is supported in part by the National Science Foundation and by the Alfred P. Sloan Foundation, enhancing public understanding of science and technology in the modern world. More information about Sloan at www.sloan.org]
JAD: Hey, I'm Jad Abumrad.
ROBERT: I'm Robert Krulwich.
JAD: This is Radiolab.
ROBERT: And we're talking about death, about the big D.
JAD: Yeah. And in the last section, we had a guy who tried to beat the deadliest disease known to man.
ROBERT: But I can one up that because I talked to a guy who thinks that one day we will be able to beat death, period. End of sentence. Remember when we were at Harvard, and we were talking to George Church.
GEORGE CHURCH: George Church professor of genetics at Harvard Medical School.
ROBERT: We were doing this show about bioengineering.
GEORGE CHURCH: So here's an example where we might grow up a large batch of cells in a fermenter.
JAD: Yeah, George Church was the guy who was trying to use little bacteria to make gasoline.
GEORGE CHURCH: A couple of liters.
ROBERT: He is manipulating life.
JAD: Right.
ROBERT: He also flirts around with the idea of eliminating the concept of death.
GEORGE CHURCH: I think we, I think I disagree that there is a quantum leap between living and nonliving. I think there's a continuum between non-living and living. And you can create all sorts of things.
ROBERT: Wait, wait! At some point, like if I were to shoot you in the head, and you would have fall on the floor with a hole in your head and bleed, and I have no nurse or no doctor help you, at some point, your state will have changed fundamentally, you'll stop breathing and you'll be over.
GEORGE CHURCH: But I won't necessarily.
ROBERT: Yes, you will be dead.
GEORGE CHURCH: I'm saying that depending on the probability of a doctor coming into the room and fixing me and the probability of more advanced technology, being able to reverse all kinds of pathological damage, there's a value to saying that there isn't a continuum between life and death.
ROBERT: I'll give you the continuum. But I'm also thinking there will be a certain point in which you are unmistakably over.
GEORGE CHURCH: With current technology, but not necessarily with future technology. And there may be…
ROBERT: You're saying that it is possible that you can never be totally dead? That that might be a reversible state at some point?
GEORGE CHURCH: Well, if we recorded the position of all my atoms, and we could recreate the position of all those atoms, you could completely burn me into atoms and then reassemble. And isn't there, isn't it the end? I'm alive again?
ROBERT: Yes, I suppose in the conceptual and if you get to be really, really, really clever, I guess you could reverse everything. But maybe we could never get that clever? or do you think that that…
GEORGE CHURCH: I mean, I just, I think it's going to boil down to cost. You know, the idea of death implies that there is a sharp point at which point of no return, and I'm saying this gets harder and harder and harder.
ROBERT: But not impossible.
GEORGE CHURCH: And I don't see that as particularly impossible. I mean, if you've recorded the state of the living thing before it starts going into this impossible decay, you just start from scratch and you build it from scratch. Nothing is really completely lost, nothing is completely gained. The main thing that is retained through all this is the information.
ROBERT: And George Church thinks that being alive is having all that information. So Jad
JAD: Hmm.
ROBERT: If I knew where all your atoms are right now, you could always come back. That's his view.
JAD: [laughs]
ROBERT: You'll come back.
JAD: A terrible thought for you, isn't it?
ROBERT: For my tastes, there's a much more pleasant way to think about it. The other way to think about it is to think like Bernd Heinrich, a professor at the University of Vermont who got a curious letter and a wonderful letter, I think, from a student of his named Bill.
BERND HEINRICH: He was a grad student in entomology at UC Berkeley when I was teaching there and he came out and visited at the camp in Maine.
ROBERT: Bernd, you see, has a cabin in the western part of Maine up on top of a mountain. It's actually very beautiful, it's set in the woods of spruce and pine. Bill, the grad student did spend some time there and then he moved back to Southern California, and a few years passed and then this letter arrived.
BERND HEINRICH: Mm-hmm
ROBERT: Did you have any sense that there was anything wrong before you got the letter? Or was just out of the blue?
BERND HEINRICH: No, no, I had no sense whatsoever. No, he was hale and hearty and got that letter.
ROBERT: So here's how the letter when it begins. ‘Yo, Bernd, I have been diagnosed with a severe illness and I'm trying to get my final disposition arranged in case I dropped sooner than I hoped. I want an Abbey burial.' This phrase Abbey burial refers to a guy named Edward Abbey who was a very, very famous ecologist and who was brought into the desert by his best friends in a sleeping bag right after he died, and just put in the ground. No embalming, no coffin, lightly covered with, with, sand. And that's where they left him. That is what Bill wanted to have happen. Anyhow, ‘the upshot is' he wrote ‘one of the options is burial on private property. What are your thoughts on having an old friend as a permanent resident at the camp?' signed Bill. In other words, Bill wanted to be laid out on the ground and even under the ground At Bernds place in Maine.
BERND HEINRICH: I wrote him I think, I don't think I would, I would want to have him laid out in front of my camp in Maine. I think that's, although, you know, if it was a wilderness where you know, people are not going to be walking around, then, you know, I would think more favorably of it. I think right now, I don't think we want to have carcasses lying around in the woods. You know, I definitely don't think that.
ROBERT: But he did write Bill this he wrote, I read you loud and clear. When it's my turn I too want no less for myself. A casket would be for you as it was for Edward Abbey, an unacceptable cage for our otherwise free and ever-recycling molecules that would soon become incorporated into the earth's ecosystem.
BERND HEINRICH: You know, I agree with the idea. I just feel that you know, being sealed up on totally removed from all the natural processes that normally occur with every animal on earth is very somehow frightening. It's odd. It seems unnatural. And I don't know it just…
ROBERT: It's funny that you use the word frightening. I think most people lock themselves up in a casket because they're frightened to be munched on by worms and beetles and things.
BERND HEINRICH: Yeah, no, I don't, I don't find that frightening at all. I find that comforting to be part of the ecosystem, to be composed into grass, to be composed into ravens, to be composed into flowers, and trees, you know that's a comforting thought to me.
ROBERT: That's the other way to think about it is that you're releasing yourself for the chance to be lots, and lots, and lots, and lots of different new and more beautiful lives that will succeed you. Which…
JAD: I don't know.
ROBERT: Boy, I would say that if I could become plants and new animals
JAD: Would that make you swoon?
ROBERT: No, it would make me feel like I'm like, I'm a collection of molecules. I'm here for a season, 60, 70, 80 years, whatever. And then I let my molecules go, I disappear, and the molecules go on to new adventure.
JAD: Yeah, but that, but then you're gone.
ROBERT: Yeah, I'm gone.
JAD: You're lost? Well, the human that was here for 60, 70, 80 years, whatever, is suddenly not here anymore. And there. Isn't that an absence? There's a vacancy. Don't you feel that? I mean, I love for the Beatles and the things and the everyone to be together. But there is also the sense that when you disappear, you're gone. You're not, I mean, I understand on some level what George Church was saying to you, I mean, why if you've got the technology, would you want to lose something so precious as a friend or a family member or a lover or something or a co-host? When you can bring that person back?
ROBERT: But can you really bring them back? I mean, or maybe they're like, passed their sell-by date. I don't like that. Like, don't you have a feeling sometimes that when it's time, it's time?
JAD: I do actually.
ROBERT: And I do keep being brought back, it's like being a prisoner of technology. Like you're being forced into a continuous existence which you may not even want?
JAD: I actually I totally agree with that I was just being argumentative a second ago and particularly agree because sometimes what it takes to keep you there is worse than being gone.
ROBERT: Yeah!
JAD: As we'll hear in our next segment.
ROBERT: Right after this break.
[LISTENER: Hi, it's Mary Bouchard, calling from the Finger Lakes region of upstate New York. Radiolab is supported in part by the National Science Foundation, and by the Alfred P Sloan Foundation, enhancing public understanding of science and technology in the modern world. More information about Sloan at www.sloan.org]
JAD: Hey, I'm Jad Abumrad.
ROBERT: I'm Robert Krulwich.
JAD: This is Radiolab. And today ...
ROBERT: Well, the show is about dead reckoning.
JAD: And you know, if we're going to do a show called Dead Reckoning, we might as well talk to people who deal with death every day.
ROBERT: So these are the—this is practical people dealing with this problem quite practically,
JAD: But not in the way you would expect.
ROBERT: Not at all. This one comes from our producer Sean Cole.
SEAN COLE: Well, this story starts with a doctor.
[phone ringing]
SEAN: A guy named Joseph Gallo.
JOSEPH GALLO: Hello?
SEAN: Can you hear me Joe?
JOSEPH GALLO: Yeah.
SEAN: Okay, great.
JOSEPH GALLO: Yeah,I feel like a celebrity. You're sending a sound person here.
SEAN: Joe's an MD, but He's also a professor.
JOSEPH GALLO: At Johns Hopkins University in Baltimore.
SEAN: And he's been working on a study that I just, frankly, find totally fascinating.
JOSEPH GALLO: Let me, yeah, let me, if I rambled, just stop me. But…
SEAN: So here's the story. A long time ago ...
JOSEPH GALLO: In the 1940s, and early '50s.
SEAN: Johns Hopkins launched something called the precursor study, and all of these graduating medical students…
JOSEPH GALLO: 1,337 students.
SEAN: Signed up.
JOSEPH GALLO: Between 1948 and 1964.
SEAN: And every one of them agreed to be poked, prodded, examined up and down.
JOSEPH GALLO: You know, their blood pressure their weight
SEAN: Asked all these questions,
JOSEPH GALLO: Their habits, how much exercise they took, they did Rorschach Inkblot Test.
JAD: Wow. And what was the point of this study?
SEAN: Well, originally was just to pinpoint the precursors to heart disease. But over time, the study went way beyond that. And the researchers started asking all sorts of other questions.
JOSEPH GALLO: Questions about depression, anxiety…
SEAN: Fifty years of the study, and the doctors are getting older and older and
JOSEPH GALLO: Social support, retirement.
SEAN: At a certain point about 15 years ago, Joe, and the other researchers start to ask these doctors about death.
JOSEPH GALLO: So if you—if you have that paper in front of you?
SEAN: Yeah, hang on.
SEAN: Essentially, what they did was they presented the doctors and many of whom are now in their 60s, 70s, and 80s with the following scenario ...
JOSEPH GALLO: Scenario was there.
SEAN: It says, it says…
SEAN: And it goes something like this, so say you have brain damage, or some brain disease, that can't be cured. You can't recognize people. You can't speak understandably. And you're in this condition for a long time.
ROBERT: Like brain dead?
JOSEPH GALLO: Well, it's you're not brain dead, but it kind of describes maybe a scenario that's like severe dementia.
SEAN: And then it says, indicate your wishes regarding the use of each of the following medical procedures.
JOSEPH GALLO: There is a list; 10: CPR, IV fluids, major surgery.
SEAN: There's a bunch of them.
JAD: So the question they're asking is if like, if, if I'm in this terrible situation, what? would I want these things? Would you agree to have these things done to you?
SEAN: If it came down to it?
JAD: Right.
ROBERT: Okay.
SEAN: So how so what would you say, as an example?
ROBERT: You're asking us now?
SEAN: Yeah. And I also put the question to a bunch of people on the street.
[car honking]
SEAN: Sir. My name is Sean Cole. I'm a reporter with…
ROBERT: What well, give me one?
SEAN: So CPR, for example. So your heart stops, CPR?
JAD: Would I want CPR?
MAN: Yes.
JAD: Yeah.
ROBERT: I want somebody to do that.
MAN: Yes.
WOMAN: Sure.
WOMAN: Yes.
MAN: Well, yes.
SEAN: Seems like a no-brainer.
SEAN: What about mechanical ventilation? It's a breathing machine.
ROBERT: A breathing machine.
SEAN: You're gonna die if you don't get it?
ROBERT: Well.
MAN: Maybe.
JAD: Then yes, yeah, okay.
MAN: Yes.
WOMAN: Sure.
WOMAN: Yeah. I wouldn't say don't do it. Yeah.
SEAN: Kidney dialysis.
SEAN: Dialysis?
JAD: Yeah.
MAN: Yes. Right? I think so.
SEAN: Feeding tube?
MAN: Yes.
MAN: Yup.
SEAN: Major surgery.
WOMAN: I don't know.
SEAN: Like a gallbladder operation? If we're just talking about the gallbladder…
MAN: Sure.
MAN: Yeah.
SEAN: Antibiotics?
WOMAN: Yeah.
SEAN: Totally?
WOMAN: Sure.
SEAN: Sure. IV hydration?
WOMAN: Yeah.
MAN: Yes, Obviously.
SEAN: You would want all that?
WOMAN: Yeah.
SEAN: Yes. Yes. And yes, that's what most people say. They want most everything. Maybe not some of the super invasive stuff. But generally, yes.
JAD: Okay!
SEAN: On the other hand, you asked the doctors what they want. Same situation, brain dead, you're brain injured, whatever, do they want CPR?
JOSEPH GALLO: Ninety percent say no, they would not want CPR.
JAD AND ROBERT: Really? 90 percent?
ROBERT: Whoa!
SEAN: No. Yeah. I mean, I asked a bunch of doctors at a vascular health conference here in New York They said the same thing.
SEAN: CPR?
CONFERENCE ATTENDEE: No CPR!
CONFERENCE ATTENDEE: No!
CONFERENCE ATTENDEE: No CPR.
CONFERENCE ATTENDEE: No CPR.
JOSEPH GALLO: And almost 90 percent wouldn't want ventilation, or dialysis.
CONFERENCE ATTENDEE: Definitely not.
CONFERENCE ATTENDEE: No, no, no.
JOSEPH GALLO: Eighty percent would not want surgery.
CONFERENCE ATTENDEE: Oh, no.
JOSEPH GALLO: Eighty percent would not want invasive testing.
CONFERENCE ATTENDEE: No, no.
JOSEPH GALLO: Almost 80% Wouldn't want a feeding tube.
JAD: What?
JOSEPH GALLO: And then pain medicine is the one that's a bit different.
SEAN: The actual item on the survey reads, would you opt for pain medications, even if they dull the consciousness and indirectly shorten my life?
JOSEPH GALLO: There 80% of them say?
CONFERENCE ATTENDEE: Yes.
CONFERENCE ATTENDEE: Yes!
CONFERENCE ATTENDEE: Yes.
CONFERENCE ATTENDEE: Pain reliever, yes.
CONFERENCE ATTENDEE: Absolutely.
CONFERENCE ATTENDEE: Yes.
CONFERENCE ATTENDEE: Yeah.
CONFERENCE ATTENDEE: For it.
CONFERENCE ATTENDEE: Yes.
CONFERENCE ATTENDEE: Pain killer, yes.
CONFERENCE ATTENDEE: Pain medication, Yes.
JAD: So pain medication is all it is. That's all they want?
SEAN: For the most part, yeah.
ROBERT: Why would there be such a big gap between—between doctors and patients?
SEAN: Well, hi is that you?
KEN MURRAY: It's me.
SEAN: Great to meet you.
KEN MURRAY: You also, Sean!
SEAN: How are you doing?
SEAN: It started to become clear to me when I talked with Ken Murray, he's also a doctor
SEAN: And you're in your doctor White's here.
KEN MURRAY: I thought I'd impress you.
SEAN: I met up with him at a hospital in Los Angeles. He's written a bunch of articles now about how doctors want to die.
KEN MURRAY: This exact question was asked…
SEAN: So I asked him like, why is there this difference, you know, particularly with something like CPR? What is it that doctors know that we're not aware of?
KEN MURRAY: Well, we know that CPR is basically pretty terrible. As an intervention. It basically doesn't work very well. And—and people just don't believe that. They just can't believe it.
SEAN: And for very good reason. There was a study done in 1996, about how many people survive CPR intervention on ER, Chicago Hope, Rescue 911. It's‘96, those are hot shows then. And so the researcher watched all of these medical dramas.
KEN MURRAY: And recorded what the result was.
[ARCHIVE CLIP, Chicago Hope: Come on, you could do it, come back to us Don, Come on! Two, Three, Four!]
KEN MURRAY: And the answer was 75 percent of the time, people were revived.
[ARCHIVE CLIP, Chicago Hope: Okay, get the oxygen. Easy breaths. Easy breaths!]
KEN MURRAY: It works 75 percent of the time. The actual number is more like eight.
JAD: Eight percent?
SEAN: Roughly eight percent survived to at least a month.
KEN MURRAY: And in fact, it's worse than that.
SEAN: Here's how that eight percent breaks down.
KEN MURRAY: When you actually break it down. There was a fellow who did a study in 2010, he looked at 95,000 cases. Actually more than that, and I think it was all the cases in Japan that year. And what he found was that about three percent had what you would call a good outcome. That is, returned to a meaningful quality of life.
SEAN: You and me sitting here talking and eating sandwiches.
KEN MURRAY: Exactly. About the same number ...
SEAN: Three percent or so.
KEN MURRAY: ... ended up in a chronic vegetative state, not quite brain dead, but pretty close.
SEAN: And the final two percent.
KEN MURRAY: Were in some sort of intermediate level, not good. But they weren't comatose. Everybody else was dead. That's the reality of it. And we physicians, we know that, we've actually done CPR, we have actually laid hands on the chest.
SEAN: Here's something I didn't know, Ken says that when you do CPR, you often end up cracking the person's ribs.
JAD: Wow.
SEAN: And he had that, according to Ken is kind of mild in terms of some of the things that doctors put patients through.
KEN MURRAY: I think a lot of times we're doing things to people that we wouldn't do to a terrorist.
SEAN: Is that true? Or is that an overstatement?
KEN MURRAY: I'm not kidding!
SEAN: Like what kinds of things?
KEN MURRAY: Well, paralyzing somebody so that you cannot move, which you generally have to do when you put a person on a ventilator, a breathing machine, a respirator, when you put somebody on one of these machines, it breathes for you. But the problem is, you will fight it, because you'll have your own rhythm. So what happens is you have a person that is fighting, fighting, fighting, fighting, and you can't get air in and out of them. So you paralyze them.
SEAN: So they stopped fighting. You know, they can't move.
KEN MURRAY: But it doesn't mean they're asleep. They're not asleep. They are completely helpless. And yet they're aware of everything that's going on around them.
SEAN: Sounds nightmarish, actually.
KEN MURRAY: Yeah. Yeah.
SEAN: Ken took me through a bunch of different situations from congestive heart failure, to lung disease and pancreatic cancer, where he feels basically that the treatment is worse than the actual disease of what you have. It may be prolonging but not for very long, and the life that you have left is misery.
KEN MURRAY: Right. Right.
SEAN: In fact, Ken says the colleagues of his other doctors…
KEN MURRAY: They'll turn to Me in the ICU and they'll say, if you find me like this kill me. And they're not kidding!
SEAN: He says there are doctors who wear medallions with the words, ‘no code' stamped on them, which just means ‘don't resuscitate me'. He's even seen tattoos that say ‘no code'.
JAD: Okay. Can I talk to you now?
SEAN: Yes.
JAD: Do you have any idea…? Come on, turn that off. Sean, can I just record for one second?
SEAN: Yeah.
JAD: Because while you were reporting this piece, a very strange coincidence happened to me, I was visiting my dad. And after dinner one night, he sits me down and he says, ‘I have something important I want to tell you. I've signed an Advanced Directive, which basically means if I end up in the hospital, terminally ill or something, I don't want a lot of medical stuff done to me.' I had not told him about your story at all.
SEAN: Really?
JAD: Yeah.
SEAN: So it's just out of the blue.
ROBERT: And he shows you a piece of paper or…
JAD: Not then. But I just saw him a couple of days ago. And I asked him to read it to me, because I hadn't actually seen it yet.
JAD: So, what does it say?
NAJI ABUMRAD: I direct that medical care be withheld or withdrawn, and that I be permitted to die naturally, with only the administration of medications.
JAD: You can skip over that paragraph.
NAJI ABUMRAD: I authorize the withholding of artificially provided food, intravenous fluids, and other nourishments.
JAD: If I cannot give directions regarding my medical care intended, my family physicians honor this declaration as the final expression of my legal right to refuse medical care, and I accept the consequences of that refusal. So pain medication is all you really want?
NAJI ABUMRAD: Yeah. Keep me comfortable.
JAD: So.. wait one second,sounds like the baby's crying. So… you… it sounds like, why wouldn't you want artificially provided food, intravenous fluids or other nourishment?
NAJI ABUMRAD: That's my choice.
JAD: Yeah, but that doesn't sound like it's that much of an intervention. Really!
NAJI ABUMRAD: It is an intervention to sustain life unnecessarily if I should ever have a terminal condition.
JAD: Would you want CPR done?
NAJI ABUMRAD: If I have a choice, the answer is no.
JAD: But wouldn't you want mam or I to be in a position where we can make the decision?
NAJI ABUMRAD: I mean, what if you conflict?
JAD: Like she—she feels one way I feel another?
NAJI ABUMRAD: Yeah.
JAD: He told me this is one of the worries that doctors have that, you know, they'll talk to the patient or the patient's family, explain the situation carefully. Everyone's agreed, no more interventions, but then a random family member will just show up, you know, like a cousin or an estranged son or daughter, maybe carrying a lot of guilt, and they're like, ‘No, Doc, you have to do whatever it takes'.
NAJI ABUMRAD: At the end of the day, I give the option to the patient and to the family to make a decision. That's what I have to do.
JAD: Except in this case, the patient is him.
JAD: By having this means we have to honor this, right?
NAJI ABUMRAD: Yes.
JAD: We can't, we can't have our own feelings about it,
NAJI ABUMRAD: You can have your own feelings, but you still have to honor this.
JAD: But it is the thing that gives me pause is that, I mean, you're, you're a doctor, your job is to prolong life and to sustain life. And you choose not to when it comes to your own life.
NAJI ABUMRAD: Nobody said My job is to sustain life. My job is to sustain life when it is possible. It is not to sustain life, when it's futile. And if you're going to sustain my life on a respirator, I don't want it. That kind of life, I do not want.
JAD: More than anything, the thing he wanted to make sure of is that he does not die in a hospital. He definitely does not want to die at the place where he works.
SEAN: That's something that came up a few times among the doctors at the conference that I went to.
TIM RYAN: You know, I think, I don't want to die in a hospital bed.
SEAN: This is Tim Ryan, a Resident at Cleveland Clinic.
SEAN: Why not?
TIM RYAN: Because I see patients and patients' families suffer tremendously. And I think we do a poor job of communicating futility to them. I don't know how to communicate that effectively.
JAD: You know, though, there is one thing that struck me that talking to my dad, there's a question that patients will sometimes ask that can be a kind of bridge between doctors and patients. Very often he says when people are in the middle of this decision, they'll turn to Him and they'll say Doc, ‘what would you do if this was your mother or father?' And he says when they ask the question That way, it creates an entirely different conversation, he can say, ‘here's what I would honestly do, in fact,' and I did not know this. ‘Here's what I actually did.'
NAJI ABUMRAD: It happened with my parents, when my father fell and developed complications as a result of the fall.
JAD: He says he called the doctor and told him no more medical interventions.
NAJI ABUMRAD: And he ended up dying comfortably. Same thing happened with my mother, I had discussed it with my mother and my father, when they were not sick. This was a plan. I can tell you, in 90 percent of the patients that I see, such planning doesn't happen.
KEN MURRAY: I had a habit. For most of my career, when I'd have a new patient come in, particularly over the age of 50, I'd ask him, How do you want to die?
SEAN: This is Ken Murray again.
KEN MURRAY: You know, a lot of them give me kind of a funny look, that's an odd question for a doctor to be asking me. And I say, you know, it's the one thing we can be sure of, it's going to happen eventually. And I want to make sure it happens the way you want. And, and so people, you know, the typical answer is, ‘well, I'd like to die in my sleep, you know, painlessly'. I mean, what actually is that? That's usually a heart attack, or stroke, or something of that nature. That happens just like that. And you're gone.
SEAN: And that's what we and our doctors are essentially doing everything in our power to avoid. So like when you ask people in the abstract, they're saying…
MAN: How do I want to die? Peacefully.
SEAN: I want to die peacefully, I want to die in my sleep and everything like that. But when you ask them the specifics, you hear pound on my chest, stick a tube down my throat. So it's this paradox.
ROBERT: Oh, it sounds to you like a paradox. But think about it. It could be, it's so, so healthy, to do both. Even at the same time. It's healthy, to want to stay and it's healthy, to know how to be ready to go. I was listening to a Fresh Air sort of retake and they had Maurice Sendak on the air, who died not too long ago. Before he died, he was on Fresh Air.
JAD: It's an amazing interview.
ROBERT: Yeah, and Terry Gross was talking to him. And he's sitting there in his Connecticut house looking out the window at a tree. And he says to Terry, ‘I am so in love with the tree and the beauty of it and my chance to keep it company just a little while longer. And I want to stay and every extra day I get is a day that's precious to me and makes me want to stay even harder.' But he says to Terry, ‘I am ready to go when it's time I've made myself ready.' And that, that compromise you make with yourself to love it with your whole soul. And yet at the same time, say I'll know when it's over. And I'm composed enough and prepared enough to take my exit. That's, that's what a good death is.
JAD: Thank you, Sean Cole.
SEAN: You're welcome.
ROBERT: And thank you all for listening.
[ANSWERING MACHINE: Start of message.]
[NAJI ABUMRAD: Radiolab is produced by my son Jad Abumrad.]
[SEAN: Hey guys, it's Sean Cole. Here we are with the credits.]
[NAJI ABUMRAD: Our staff includes Ellen Horne …]
[SEAN: Soren Wheeler, Tim Howard …]
[NAJI ABUMRAD: Brenna Farrell, Molly Webster …]
[SEAN: Melissa O'Donnell, Dylan Chief, Jamie York …]
[NAJI ABUMRAD: Kelsey Padgett, Lynn Levy …]
[SEAN: and Andy Mills. Hope that's nice. Okay. Bye bye!]
[ANSWERING MACHINE: End of message.]
-30-
Copyright © 2024 New York Public Radio. All rights reserved. Visit our website terms of use at www.wnyc.org for further information.
New York Public Radio transcripts are created on a rush deadline, often by contractors. This text may not be in its final form and may be updated or revised in the future. Accuracy and availability may vary. The authoritative record of programming is the audio record.
