Radiolab - The Bitter End

Episode Date: January 15, 2013

We turn to doctors to save our lives -- to heal us, repair us, and keep us healthy. But when it comes to the critical question of what to do when death is at hand, there seems to be a gap between what we want doctors to do for us, and what doctors want done for themselves.

Wait, you're listening. Okay. All right. Okay. All right. You're listening to Radio Lab. Radio Lab. Short!

From. W. N. Y. C. See? Yes. And NPR. Hey, I'm Chad. I'm Omrod. I'm Robert Crulwich.

This is Radio Lab. The podcast. Oh. Does that how it usually works? Do you say the podcast? Yeah. Somehow it just sounded. Somehow it just sounded so different to me.

So different. Yeah. Something just got some... That's really how we did it? Well, we could try it. We could just do it differently then. Let's do it differently. Maybe try to go first. Go first.

It shocks you. Yeah. Do it. Hi, I'm Robert Colerich. I'm Chad Abumrod. And this is Radio Lab. The podcast. And on this podcast, we are going to have a conversation.

Not an easy conversation, I wouldn't say. No. It begins really with a difficult question. Maybe the most difficult question a person can be asked And asking you for us is our producer Sean Cole Well, this story starts with a doctor A guy named Joseph Gallo Hello

Can you hear me, Joe? Yeah Okay, great He's a real sweetheart actually I feel like a celebrity You're sending a sound person here Joe's an MD but he's also a professor At Johns Hopkins University in Baltimore And he's been working on a study that

I just frankly frankly find totally fascinating. Let me, yeah, let me, if I ramble, just stop me. So here's the story. A long time ago. In the 1940s and early 50s, Johns Hopkins launched something called the precursor study. And all of these graduating medical students,

1337 students signed up. Between 1948 and 1964. And every one of them agreed to be poked, prudded, examined up and down. You know, their bloods. blood pressure, their weight, asked all these questions, their habits, how much exercise they took. They did Rorschach, inkblot tests. Wow. And what was the point of this study? Well, originally it 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. Questions about depression, anxiety. Like 50 years of this study, and the doctors are getting older and older. Search and support, retirement. At a certain point, About 15 years ago, Joe and the other researchers start to ask these doctors about death. So if you have that paper in front of you... Yeah, hang on.

Essentially what they did was they presented the doctors, many of whom are now in their 60s, 70s, and 80s, with the following scenario. It says... 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. Like you're brain dead. Well, you're not brain dead, but it kind of describes maybe a scenario that's like severe dementia. And then it says, indicate your wishes regarding the use of each of the following medical procedures. There's a list. 10. CPR, IV fluids, major surgery. This is a bunch of them.

So the question they're asking you is if, like, if I'm in this terrible situation, would I want these things? Would you agree to have these things done to you if it came down to it? Right. Okay. So what would you say as an example? You're asking us now? Yeah, yeah.

And I also put the question to a bunch of people in the street. Excuse me, sir. My name's Sean Coleman, I'm a reporter with... Well, give me one. So like, so CPR, for example. So your heart stopped CPR. Would I want CPR? Yes.

Yeah, I want somebody to do that. Yeah. Sure. Yeah. Yes. Well, yes. Seems like a no-brainer. What about mechanical ventilation?

It's a breathing machine. A breathing machine. You're going to die if you don't get it. Well, maybe. Then yes. Yeah, okay. Yes. Sure.

Yeah, I wouldn't say don't do it, yeah. You remember all of them. Kidney dialysis. Diallysis. Yeah. Yes. Right? So.

Feeding tube? Yes. I don't know. Like a gallbladder operation? If we're just talking about the gallbladder. Sure. Yes. Yeah.

Antibiotics. Yeah. Totally. Sure. Sure. IV hydration? Yes. Yes.

Absolutely. You would want all that. Yeah. 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. Okay.

On the other hand, he asked the doctors what they want, same situation. Brain dead or brain injured, whatever. Do they want CPR? 90% say no. They would not want CPR. Really? 90%? No, yeah.

I mean, I asked a bunch of doctors. vascular health conference here in New York. Each of the following medical procedures. They said the same thing. CPR. No CPR. No CPR. No CPR.

And almost 90% wouldn't want ventilation. No. Or dialysis. Definitely not. No, no. 80% would not want surgery. No. 80% would not want invasive testing.

No, no. Almost 80% wouldn't want a feeding tube. What? No. Or blood products. No. Antibiotics. 60% say... Not really.

IV hydration, about 60%. Say no? They don't. Probably not. And then pain medicine is the one that's a bit different. The actual item on the survey reads, would you opt for pain medications, even if they dull the consciousness

and indirectly shorten my life? There, 80% of them say... Yes. Yes? Yes. Pain reliever, yes. Absolutely. Yes.

More. Yeah, thank you. Yes. Pain medication, yes. Yes. So pain medication? is that's all they want? For the most part, yeah.

Why would there be such a big gap between doctors and patients? In terms of how they wanted it in their life? Yeah. Well, hi. Is that you? It's me. Great to meet you.

You're also, Sean. How are you doing? It started to become clear to me when I talked with Ken Murray. He's also a doctor. And you're in your Dr. White's here? I thought I'd impress you. 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. This exact question was, 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? Well, we know that CPR is basically pretty terrible as an intervention. It basically doesn't work very well. And people just don't believe that.

They just can't believe it. And for very good reason. There was a study done in 1996 about how many people survive CPR intervention on ER, Chicago Hope, Rescue 9-1-1-1, it's 96, those are hot shows then. And so the researcher watched all of these medical dramas and recorded what the result was. Come on, you can do it. Come back to us, Don, do it. Come on. Two, three, four.

And the answer was, 75% of the time, people... Come on. Come on. Okay, get the oxygen. Easy breast. We're revived. Come on, nice. Easy breast.

It works 75% of the time. Easy breast, easy breast, John. The actual number is more like eight. Eight percent? Roughly eight percent survived to at least a month. And in fact, it's worse than that. Here's how that eight percent breaks down. When you actually break it down, there was a fellow who did a study in 2010.

He looked at 90 years. 5,000 cases, actually more than that. And I think it was all the cases in Japan that year. And what he found was that about 3% had what you would call a good outcome that is return to a meaningful quality of life. You and me sitting here talking eating sandwiches. Exactly. About the same number 3% or so ended up in a chronic vegetative state, not quite brain-demeanor. dead, but pretty close. And the final two percent 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.

Here's something I didn't know. Ken says that when you do CPR, you often end up cracking the person's ribs. Wow. And yet that, according to Ken, is kind of mild in terms of some of the things that doctors put patients through. I think a lot of times we're doing things to people that we wouldn't do to a terrorist. Is that true or is that overstated? I'm not kidding. Like what kinds of things? 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. respirator. When you put somebody on one of these machines, it breathes for you. But the problem is you'll 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. So they stop fighting. You know, they can't move. 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. Sounds nightmareish, actually. Yeah, yeah. 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. Right, right. In fact, Ken says that colleagues of his, other doctors, they'll turn to me in the ICU, and they say, if you find me like this, kill me. And they're not kidding.

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. Okay. Can I talk to you now? Yes. Do you have any idea?

Come on, turn that off. All right, Sean, can I just break in for one second? Yeah. 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. Really? Yeah. So it was just out of the blue. And he shows you a piece of paper? No, not then. But I just saw him a couple days ago and asked him to read it to me because I hadn't actually seen it yet.

What does it say? I direct that medical care be withheld or withdrawn and that I be permitted to die naturally with only the administration of medications. You can skip over that paragraph. I authorize the withholding of artificially provided food into venous fluids and other nourishments. If I cannot give directions regarding my medical care,

I intend that my family and physicians honor this declaration as the final expression of my legal right to refuse medical care and I accept the consequences of that refusal. Yeah. Huh. So pain medication is all you really want? Yeah. To keep me comfortable.

So, it looks like the baby's really. crying. So you, it sounds like, why wouldn't you want artificially provided food, intravenous fluids or other nourishment? That's my choice. I know, but that doesn't sound like it's that much of a intervention, really. It is an intervention to sustain life unnecessarily. If I should ever have a terminal condition. Would you want CPR done? If I have a choice, the answer is no. But wouldn't you want Mom or I to be in a position where we can make it? the decision? I mean, what if you conflict? Like, she feels one way, I feel another? Yeah. You tell me, this is one of the worries that doctors have, that, you know, they'll have talked to the

patient or the patient's family, explain the situation carefully, and 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. 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. Except in this case, the patient is him. But by having this means we have to honor this, right? We can't have our own feelings about it. You can have your own feelings, but you still have to honor this. But it's just, the thing that gives me pause is that, I mean, you're a, 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. 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. 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. That's something that came up a few times among the doctors at the conference that I went to. I think I don't want to die in a hospital bed. This is Tim Ryan, a resident at Cleveland Clinic. Why not? 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.

I don't know how to do it better. It's a difficult thing to bring up to the family. How do you tell them your grandfather is not going to get better? We can keep him alive for a few weeks or a few months, but he's probably going to have a tracheostomy and a feeding tube, a catheter in his bladder, and then he'll get bed sores and slowly deteriorate. I think we can focus on, you know, extending a life that has some quality so they can interact with their family.

But, you know, once that's gone, I don't know that we do much benefit. It sounded great. That was perfect. Why didn't you say that? I don't know. You have to have a sense that people want to hear that. Well, no one would want to hear them, but they would need to hear it. It's a little bit presumptuous. You know, I mean, you can't tell someone not to hope. You can't pressure them to just let go of their loved one. And obviously, you can't refuse to provide care.

Do 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 asked the question that way, it creates an entirely different conversation. He can say, here's what I would honestly do.

Or in fact, and I did not know this. Here's what I actually did. It happened with my parents. When my father fell and developed complications as a result of the fall. He says he called the doctor and told him no more medical interventions. 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 9% of the patients that I see, such planning doesn't happen. 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 them, how do you want to die? This is Ken Murray again. You know, a lot of them, you know, give me kind of a funny look. That's an odd question for the doctor to be asking me. I said, well, you know, it's the one thing we can be sure of that's going to happen eventually,

and I want to make sure it happens the way you want. And so people, you know, the typical answer is, well, I'd like to die in my sleep, you know, painlessly. The fastest way without any pain. Peaceful. Without pain and with friends. Which is how most people answer the question. Doctors and non-doctor. With the least amount of pain and not drag it on.

Swiftly and painlessly. But what is that? I mean, what actually is that? That's usually a heart attack or stroke, something of that nature that happens just like that. And you're gone. 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, How do I want to die peacefully?

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. Well, 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 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. That's an amazing interview. 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 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 what a good death is. Thank you, Sean Cole. You're welcome. This is Sean Cole. I mean, it's not his last appearance here, but this is the last time he's on our full paycheck. He's going off to host many things and be reported in other places. Yes, it is a kind of death, really. It's nothing like a kind of death. A good death, though, would mean, Sean, that you come back here regularly.

I will. I will haunt you all. You better. Special thanks to everybody at the Vieth Symposium on vascular health. and to our doctors in this case, Joe Gallo and Ken Murray. I'm Jed. I'm Robert Crulwich. Thank you guys for listening. Hey, this is Glenn and Rand. And Reagan. We're listeners from San Marcos, Texas. And here we're going to read the credits.

Radio Lab 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. All right, thanks.