Jan 15, 2013

The Bitter End

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.

Producer Sean Cole introduces us to Joseph Gallo, a doctor and professor at Johns Hopkins University who discovered something striking about what doctors were not willing to do to save their own lives. As part of the decades-long Johns Hopkins Precursors Study, Gallo found himself asking the study's aging doctor-subjects questions about death. Their answers, it turns out, don't sync up with the answers most of us give.

Ken Murray, a doctor who's written several articles about how doctors think about death, explains that there's a huge gap between what patients expect from life-saving interventions (such as CPR, ventilation, and feeding tubes), and what doctors think of these very same procedures.

Jad attempts to bridge the gap with a difficult conversation -- he asks his father, a doctor, why he's made the decisions he has about his own end-of-life care... and whether it was different when he had to answer the same questions for his father and mother.

A chart of doctor responses from the Precursors Study:

Preferences of physician-participants for treatment given a scenario of irreversible brain injury without terminal illness. Percentage of physicians shown on the vertical axis. For cardiopulmonary resuscitation (CPR), surgery, and invasive diagnostic testing, no choice for a trial of treatment was given. Data from the Johns Hopkins Precursors Study, 1998. Courtesy of Joseph Gallo, "Life-Sustaining Treatments: What Do Physicians Want and Do They Express Their Wishes to Others?"

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Speaker 1: You're listening to Radiolab. From WNYC and NPR.

Jad: Hey, I'm Jad Abumrad.

Robert: I'm Robert Krulwich.

Jad: This is Radiolab.

Robert: The podcast.

Jad: Does that, how it usually works? Do you say the podcast?

Speaker 2: Yes.

Jad: Somehow it just sounded so different to me then.

Robert: So different.

Jad: Something just got--- That's really how we did it?

Robert: I thought we could try that.

Jad: We could just do it differently then.

Robert: Let's do it differently. Should I go first?

Jad: Go first.

Robert: That always shocks you.

Jad: Do it.

Robert: Hi, I'm Robert Krulwich.

Jad: I'm Jad Abumrad.

Robert: This is Radiolab.

Jad: The podcast.

Robert: On this podcast, we're going to have a conversation. Not an easy conversation I wouldn't say.

Jad: No. It begins really with a difficult question, maybe the most difficult question a person can be asked. Asking for us is our producer Sean Cole.

Sean: Well this story starts with a doctor.

[phone rings]

Sean: A guy named Joseph Gallo. Hello, can you hear me, Joe?

Joseph: Yes.

Sean: Great. He's a real sweetheart actually.

Joseph: I feel like a celebrity you're sending a sound person here to record.

Sean: Joe's an MD but he's also a professor.

Joseph: At Johns Hopkins University in Baltimore.

Sean: He's been working on a study that I just frankly find totally fascinating.

Joseph: If I ramble just stop me.

Sean: Here's the story. A long time ago.

[music]

Joseph: In the 1940s and early 50s-

Sean: -Johns Hopkins launched something called the Precursor Study and all of these graduating medical students-

Joseph: -1337 students-

Sean: -signed up-

Joseph: -between 1948 and 1964.

Sean: Every one of them agreed to be poked, prodded, examined up and down.

Joseph: Their blood pressure, their weight.

Sean: Asked all these questions.

Joseph: Their habits. How much exercise they took. They did a Rorschach inkblot test.

Jad: Wow. What was the point of this study?

Sean: 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.

Joseph: Questions about depression, anxiety.

Sean: 50 years of the study and the doctors are getting older and older and-

Joseph: 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: If you have that paper in front of you?

Sean: Yes, 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.

Joseph: What scenario is there?

Sean: It says-- It goes something like this. 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: You're brain dead?

Joseph: Well you're not brain dead but it describes maybe a scenario that's like severe dementia.

Sean: Then it says, "Indicate your wishes regarding the use of each of the following medical procedures."

Joseph: There's a list. 10, CPR, IV fluids, major surgery.

Sean: There's a bunch of them.

Jad: The question they're asking is if I'm in this terrible situation would I want these things?

Sean: Would you agree to have these things done to you if it came down to it?

[car honking]

Sean: What would you say, as an example?

Robert: You're asking us now?

Sean: Yes and I also put the question to a bunch of people on the street. My name's Sean Cole I'm a reporter with-

Robert: Give me one.

Sean: CPR for example, so you're heart stops. CPR.

Jad: Would I want CPR?

Sean: Yes.

Robert: Yes. I want somebody to do that.

Speaker 3: Yes.

Speaker 4: Sure.

Speaker 5: Yes.

Speaker 6: Yes.

Speaker 7: Well yes.

Jad: Seems like a no-brainer.

Sean: What about mechanical ventilation? It's a breathing machine.

Robert: A breathing machine?

Sean: You're going to die if you don't get it.

Robert: Well, maybe.

Jad: Then yes, okay.

Speaker 8: Yes.

Speaker 9: Yes.

Speaker 10: Sure.

Speaker 11: Yes, I wouldn't say don't do it .

Jad: You remember all of them?

Sean: Kidney dialysis?

Jad: Yes.

Speaker 12: Yes.

Robert: I think so, yes.

Sean: A feeding tube?

Speaker 13: Yes.

Speaker 14: Yes.

Sean: Major surgery?

Speaker 15: I don't know.

Jad: Like a gall bladder operation? If we're just talking about the gall bladder.

Sean: Gall bladder, sure.

Jad: Yes.

Robert: Yes.

Sean: Antibiotics?

Speaker 16: Yes.

Jad: Totally.

Speaker 17: Sure.

Speaker 18: sure.

Sean: IV hydration?

Speaker 20: Yes.

Speaker 21: Yes.

Robert: Obviously.

Sean: You would want all that?

Speaker 22: Yes.

Robert: Yes, yes, and yes.

Sean: That's what most people say. They want most everything. Maybe not some of the super invasive stuff but generally, yes. On the other hand, you ask the doctors what they want same situation, brain dead or brain-injured whatever, do they want CPR?

Joseph: 90% say no. They would not want CPR.

Jad: Really?

Robert: Really?

Jad: 90%?

Robert: 90%?

Sean: Yes, I mean I asked a bunch of doctors at a vascular health conference here in New York.

Speaker 23: Each of the following medical procedures.

Sean: They said the same thing. CPR?

Speaker 23: No CPR.

Speaker 24: No.

Speaker 25: No CPR.

Speaker 26: No CPR.

Joseph: Almost 90% wouldn't want ventilation.

Speaker 27: No.

Joseph: Or dialysis?

Speaker 28: Definitely not.

Speaker 29: No, no, no.

Joseph: 80% would not want surgery.

Speaker 30: No.

Joseph: 80% would not want invasive testing.

Speaker 31: No, no.

Joseph: Almost 80% wouldn't want a feeding tube.

Jad: What?

Speaker 32: No.

Joseph: Or a blood product.

Speaker 32: No.

Joseph: Antibiotics, 60% would say-

Speaker 33: Not really.

Joseph: IV hydration, about 60%.

Jad: Say no?

Joseph: They don't.

Speaker 34: Probably not.

Joseph: 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: There are 80% of them say-

Speaker 35: Yes.

Speaker 36: Yes.

Speaker 37: Yes.

Speaker 38: Pain reliever? Yes.

Speaker 39: Absolutely.

Speaker 40: Yes.

Speaker 41: Yes.

Speaker 42: More.

Speaker 43: Painkiller, yes.

Speaker 44: Yes.

Speaker 45: Pain medication, yes.

Jad: Pain medication, that's all they want?

Sean: For the most part, yes.

Robert: Why would there be such a big gap between doctors and patients?

Jad: In terms of how they want to end their life?

Robert: Yes.

Sean: Well. Hi, is that you?

Ken: It's me.

Sean: Great to meet you.

Ken: You also Sean?

Sean: How are you doing? It started to become clear to me when I talked with Ken Murray, he's also a doctor. You're in your doctor whites here.

Ken: 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: This exact question was asked.

Sean: I asked him why is there this difference, particularly with something like CPR? What is it that doctors know that we're not aware of?

Ken: Well, we know that CPR is basically pretty terrible as an intervention. It basically doesn't work very well. People just don't believe that. They just can't believe it.

Sean: For a very good reason.

[music]

Ken: There was a study done in 1996 about how many people survive CPR intervention on ER, Chicago Hope, Rescue 911. It's '96, those were hot shows then. The researcher watched all of these medical dramas and recorded what the result was.

Speaker 46: Come on you can do it. Come back to us Dawn. Do it come on. Two, three, four.

Ken: The answer was 75% of the time people-

Speaker 46: Come on. Come one. Okay, get the oxygen. Easy breaths.

Ken: -were revived.

Speaker 46: Come on, nice easy breaths.

[person coughs]

Ken: It worked 75% of the time.

Speaker 46: Easy breaths, easy breaths Dawn.

Ken: The actual number is more like eight.

Jad: 8%?

Sean: Roughly 8% survive to at least a month.

Jad: Wow.

Ken: In fact, it's worse than that.

Jad: Here's how that 8% breaks down.

Ken: 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. I think it was all the cases in Japan that year. What he found was that about 3% had what you would call a good outcome. That is return to a meaningful quality of life.

Sean: You and me sitting here talking and eating sandwiches?

Ken: Exactly. About the same number-

Sean: 3% or so.

Ken: -ended up in a chronic vegetative state. Not quite brain dead, but pretty close.

Sean: The final 2%-

Ken: -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.

Robert: Wow.

Sean: And yet that, according to Ken, is mild in terms of some of the things that doctors put patients through.

Ken: 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 overstated?

Ken: I'm not kidding.

Sean: Like what kinds of things?

Ken: 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'll fight it because you'll have your own rhythm. 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 stop fighting? They can't move.

Ken: It doesn't mean they're asleep. They're not asleep. They are completely helpless. Yet they're aware of everything that's going on around them.

Sean: Sounds nightmarish, actually.

Ken: Yes.

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, what you have. It may be prolonging but not for very long, and the life that you have left is misery.

Ken: Right.

Sean: In fact, Ken says the colleagues of his, other doctors-

Ken: They'll turn to me in the ICU, and they 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. Can I talk to you now?

Ken: Yes.

Sean: Come on. Turn that off.

Jad: Sean, can I just break in for one second?

Sean: Yes.

Jad: 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: Yes.

Sean: So it was just out of the blue?

Robert: He shows you a piece of paper?

Jad: No, not then. I just saw him a couple of days ago and asked him to read it to me, because I hadn't actually seen it yet. What does it say?

Jad's dad: It says, "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.

Jad's dad: "I authorize the withholding of artificially provided food, intravenous fluids and other nourishments."

Jad: "If I cannot I give directions regarding my medical care, I intend that my family physicians honor this declaration as a final expression of my legal right to refuse medical care and I accept the consequences of that refusal." Pain medication is all you really want?

Jad's dad: Yes, to keep me comfortable.

Jad: What was I saying? It's like the baby's crying. Why wouldn't you want artificially provided food, intravenous fluids or other nourishment?

Jad's dad: That's my choice.

Jad: I know, but that doesn't sound like it's that much of an intervention, really.

Jad's dad: It is an intervention to sustain life unnecessarily, if I should ever have a terminal condition.

Jad: Would you want CPR done?

Jad's dad: If I have a choice, the answer is no.

Jad: Wouldn't you want mom or I to be in a position where we can make the decision?

Jad's dad: What if you conflict?

Jad: Like she feels one way and I feel another?

Jad's dad: Yes.

Jad: He told me this is one of the worries that doctors have, that they'll talk to the patient or the patient's family, explained the situation carefully and everyone's agreed no more interventions. Then a random family member will just show up, like a cousin or an estranged son or daughter, maybe carrying a lot of guilt, and they're like, "Do doc, you have to do whatever it takes."

Jad's dad: 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. By having this, it means we have to honor this. We can't have our own feelings about it.

Jad's dad: You can have your own feelings, but you still have to honor this.

Jad: The thing that gives me pause is that 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.

Jad's dad: 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.

[music]

Jad's dad: 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: I think I don't want to die in a hospital bed.

Jad: This is Tim Ryan, a resident at Cleveland Clinic.

Sean: Why not?

Tim: 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 bedsores and slowly deteriorate?" I think we can focus on extending a life that has some quality so they can interact with their family, but once that's gone I don't know that we do much benefit.

Sean: That sounded great. That was perfect. Why don't you just you say that?

Tim: I don't know. You have to have a sense that people want to hear that.

Sean: No one would want to hear that, but they would need to hear it.

Tim: It's a little bit presumptuous.

Sean: 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.

Jad: You know though, there is one thing that struck me there talking to my dad. There's a question that patients will sometimes ask that can be a 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?" 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." Or in fact, I did not know this. "Here's what I actually did."

Jad's dad: 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 them no more medical interventions.

Jad's dad: 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% of the patients that I see, such planning doesn't happen.

Ken: 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: A lot of them would give me a funny look. "That's an odd question for a doctor to be asking me." I said, "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." People, the typical answer is, "I'd like to die in my sleep painlessly."

Speaker 47: The fastest way without any pain.

Speaker 48: Peaceful.

Speaker 49: Without pain and with friends.

Ken: Which is how most people answer the question.

Jad: Doctors and non-doctors.

Speaker 50: With the least amount of pain and not drag it on.

Speaker 51: Swiftly and painlessly.

Ken: What is that? What actually is that? That's usually a heart attack or a stroke, something of that nature. That happens just like that, and you're gone.

Jad: That's what we and our doctors are essentially doing everything in our power to avoid. When you ask people in the abstract, they're saying-

Speaker 52: How do I want to die? Peacefully.

Jad: "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, "No. Pound on my chest, stick a tube down my throat." It's this paradox.

Robert: 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 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 was an amazing interview.

Robert: Terry Gross was talking to him, and he's sitting there in his Connecticut house looking out the window at a tree. 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. 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." Buddy says to Terry, "I am ready to go when it's time. I've made myself ready." 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.

[music]

Jad: Thank you, Sean Cole.

Sean: You're welcome.

Robert: This is Sean Cole's, it's not his last appearance here but this is the last time he's on our full pay-check. He's going off to host many things and be a reporter in other places.

Jad: It is a kind of death really.

Sean: It's nothing like a kind of death.

Robert: A good death though. It would mean Sean that you'd come back here regularly.

Sean: I will. I will haunt you all.

Jad: You better.

Sean: Special thanks to everybody at the VEITHsymposium on Vascular health.

Robert: To our doctors in this case, Joe Gallo and Ken Murray.

Jad: I am Jad Abumrad.

Robert: I'm Robert Krulwich.

Jad: Thank you guys for listening.

Glenn: Hey, this is Glenn.

Raymond: Raymond.

Reagan: Reagan.

Glenn: We're listeners from San Marcos Texas and here we're going to read the credits. Radiolab is supported in part by the National Science Foundation and by-

Raymond: The Alfred P Sloan Foundation, enhancing public understanding of science and technology in the modern world.

Reagan: More information about Sloan at www.sloan.org.

Glenn: All right thanks. We did it.

 

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