Dr. Jessica Zitter, author of Extreme Measures and star of the Oscar-winning documentary Extremis, didn’t set out to champion end-of-life-care reform. But as she watched patient after patient spend their last days in serious discomfort, the vow to “First do no harm” rang in her ears. Today, she’s one of the leading doctors campaigning to make a peaceful death the norm. We got to ask her all about it.
When You Die: [We were] wondering if there’s a personal story that drove you to your end of life work?
Dr. Jessica Zitter: There are so many of them that I had to write a book about it. (…) I think for me it was more than one particular story, it was a series of stories, and it was a series of sort of seeing this, again, from multiple angles, and always coming up with this same conclusion, which is that we’re ignoring the human being in the bed. I guess, that’s from the physician perspective. We’re taking humanity away from people at a most vulnerable time in their lives. The stories that really resonate with me are the ones where people maintain or are given back their humanity, and the stories that really ruffle me and leave me haunted are the ones where people don’t get that. They don’t get the right to have their personhood with them as they die.
WYD: You have a unique perspective as to why somebody might have that experience. Do you have a theory as to why this is the way it’s going down? Is it the way that doctors are trained?
DJZ: This is what I described in my book. It’s this concept of an ‘end of life conveyer belt.’ (…) We have created this thing in American culture in the past hundred years, or almost a hundred years, that is called the ‘end of life conveyer belt.’ We’ve exported it to other countries, and I really feel like I had a front row seat to it, and honestly was one of its workers as an ICU doctor, trained in the way that I was at some of the best programs in the country.
WYD: Ah.
DJZ: We’ve been thinking about fountains of youth, miracle pills and miracle cures since the times of the Greeks. (…) And we all believe in it, you know, we all have this fantasy of perpetual life we share, whether we’re doctors, or patients, or families, or anybody else in the health care system.
Look at, you know, Grey’s Anatomy. Every time I’m talking to a group of people, like, half the hands go up. People love that show. It’s the most ridiculous, I mean—sorry—but it’s one of the most unrealistic shows about technology and what it can do, what to expect from the health care system that’s out there.
WYD: Do you feel like it instills the idea in people that technology can perform a lot of miracles?
DJZ: Yeah, I do. I think they think, you know, doctors are pulling rabbits out of their scrubs every week — and we all love that.
WYD: Because we all wish it was true.
DJZ: We all do.
WYD: That’s why shows like that are popular, right?
DJZ: Right. Well, who wouldn’t want a doctor like that? And who wouldn’t want to be a doctor like that? So, it’s just this self-enforcing prophecy that keeps this machinery going.
WYD: Right. So, it’s kind of an institutionalized fear of death.
DJZ: Yeah. Institutionalized and societal-ized. I mean, it’s something that we’re all looking at even before we get to the hospitals. It’s what we expect of our doctors.
WYD: It was very clear in [the documentary] Extremis, it seems like it’s almost very much on the family level. So, it’s bigger than everybody. It’s bigger than the patient, or the doctor, or the hospital, or even the country at this point, but it’s also very much on the personal one-to-one level. It’s institutionalized in families as well, because a lot of families, probably most families, don’t have really strong conversations about this, and don’t have Advance Directives.
DJZ: Right. Right, and so, if you’re not talking about this topic, and you’re not making plans, then what happens? You just default to this ongoing movement on this conveyer belt.
WYD: I mean, it’s sad, and it’s almost comical that people might then go to the hospital and their closest reference point is a recent episode of Grey’s Anatomy, where Aunt Sue was miraculously cured, and they think, “Why not us?”
DJZ: Yeah, yeah.
WYD: Not that that can’t happen, but…
DJZ: Yeah. It does.
WYD: [But in reality,] sometimes the miracle is when you die now, not after six months of extreme suffering.
DJZ: I really talk a lot about, like, what are some of the solutions to this problem? And I guess in some ways, I think there [are] sort of three major solutions.
One is the first one, which is what you’re alluding to, which is redefine success. You know, I used to think that success could only mean fighting the disease and winning, but actually what I’ve learned in this sort of travel.
WYD: But it must even feel like it reflects on the medical professionals and the hospitals, you know … it’s like a “not on my shift” kind of thing.
DJZ: Yeah.
WYD: Is that correct?
DJZ: Oh, terribly. Yeah. In fact, some of the metrics that we have to sort of measure success [and] quality of hospitals are things like the 30-day mortality rate, which is something that surgeons and proceduralists, cardiologists are graded on, which is how many of your patients are dead at 30 days?
WYD: And meanwhile, welcome to those 30 days for that person … That’s a long and important 30 days.
DJZ: Yeah and by the way, don’t forget, if you’re on a conveyer belt for 30 days, what’s going to happen at day 31? I mean, you’re just going to all of the sudden miraculously get off that conveyer belt? No, I mean, you’re likely stuck on that conveyer belt even after the 30 days.
WYD: Right.
And the second thing I think is critically important is the concept of [end of life] advanced care planning—which I’m sure you’re extremely familiar with—which is you’ve got to start talking about it early. Before you get sick. Before you’re a patient, and thinking about what’s important to you about the way you live. And so, advanced care planning can be accessed by talking and discussions that bring death into your conversation with your loved ones. (…)
That’s the second step of what I think is important about Death Ed. Understanding the end of life conveyer belt is the first, second is learning how to start the conversation.
WYD: [What’s the common denominator?]
DJZ: It comes down to one word—and that’s courage. Because, you know, I think if we can approach this concept of death with courage and an ability to really look it in the eye, whether we’re patients and families, sort of thinking about these things of ‘what’s important to me as I’m dying’. (…)
It’s courage that’s required to grease the wheels of an honest approach, and a humanistic approach to death and dying, because it’s easy to—and I do that—I’ve done this so many times, to sort of cower in the face of death, and just pretend it’s not really here, and just keep kind of doing automatic behaviors that end up causing so much suffering.
So, I do believe that what this is going to take is courage on all of our parts.
This interview was adapted from our podcast with Dr. Zitter. Listen to the full thing here.
