Better Path to the End of Life with Dr. Jessica Zitter

Dr. Jessica Zitter, author of ‘Extreme Measures’ and star of the Netflix doc ‘Extremis’ on what she calls the ‘End of Life Conveyor Belt’ most Americans wind up on and how introducing End of Life Ed in schools could change a death-phobic culture in one generation.
Share on facebook
Share on twitter
Share on pinterest

You can also learn about Dr. Jessica Zitter and Finding a Better Path to the End of Path on her website.

End of Life Care with Dr. Jessica Zitter – Podcast Transcription

Kelly MacLean: Welcome to the When You Die podcast. I’m Kelly MacLean. My guest today is Dr. Jessica Zitter. Dr. Zitter practices in the intensive care unit and in palliative care at the Alameda County Medical Center in Oakland, California. She’s the author of Extreme Measures: Finding a Better Path to the End of Life. Her essays and articles have appeared in the New York Times, The Atlantic, The Huffington Post, The Journal of the American Medical Association and other publications. Her work is featured in the Oscar and Emmy nominated short documentary, Extremis, which you can watch on Netflix now. It’s twenty-four minutes long, and it’s twenty-four minutes that could really change your life, unlike most of the things that I watch on Netflix.

Both the documentary and the book focus on something that she calls the “end of life conveyor belt,” which once you learn a little more about, might be something that you would like to opt out of for the end of your own life. Unfortunately, that’s not an opportunity everybody knows they have. I think it’s safe to say that part of Dr. Zitter’s life mission is to make sure that we all know what we’re getting ourselves into, at the very least, when it comes to this end of life conveyor belt, but I will let her tell you the rest.

Dr. Zitter, thank you so much for joining the When You Die podcast.

Dr. Jessica Zitter: So excited to be here. Great. Thank you.

KM: I was wondering if there’s a personal story that drove you to your end of life work?

JZ: Oh, good question. There are so many of them that I had to write a book about it. [laughs]

KM: Mm-hmm. [laughs]

JZ: You know, honestly, I think I come at this from so many different angles, and with so many different stories. And it’s interesting that you ask about story, because I think story is the vehicle that can bring us all into this issue and make us all motivated to do better at it, which we’re not really doing very well at, as a society.

End of Life Care

So, gosh, story after story, I have so many. I’m just trying to think, is it a story about a patient? Is it a story about my family? Is it a story about me? I could give you one from each of those realms really, really easily. I think for me it was more than one particular story, it was a series of stories, and it was seeing this issue, again, from multiple angles, and always coming up with the 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, and so 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.

KM: As a doctor, do 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? Is it that it’s too hard to get out of the mentality of trying to cure?

JZ: It’s bigger than the doctor. It’s bigger than the patient. This is what I described in my book. It’s this concept of an end of life conveyor belt. I feel like 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 conveyor belt.  We’ve exported it to other countries. 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.

We were just taught to believe in this miracle of technology, that is really something that’s only arisen here in the United States since the forties and fifties. It’s the sixties, seventies and eighties when it got really revved up, and now it’s here. And it’s here in such force in our minds as some kind of savior to this problem of dying, which is honestly a human concern. We’ve been thinking about fountains of youth and miracle pills and miracle cures since the times of the Greeks and the ancient cultures of God knows what. There are stories and myths and beliefs going way, way back in time, and now we have this sort of pseudo fix, this mythological fix, that we’ve created, this end of life conveyor belt, and it’s bigger than all of us. And we all believe in it. We all have this fantasy we share of perpetual life, whether we’re doctors or patients or families or anybody else in the health care system. Although, I think nurses were the first to wake up to this and say, “Wait a minute.”

KM: Mm-hmm.

JZ: It’s this default churning machinery that’s going and going and going. There are many different variables that enhance it, that enforce it. There’s the whole payment structure and the fact that doctors are paid, and hospitals are paid to do things in a fee-for-service way. There’s the fear of death, this death anxiety which I think, as you probably well know, is such a part of our culture, and that fuels it and prevents us from stepping back and saying, “Wait a minute. Is this technology really the fix to this problem?” And we all have this expectation that that is what modern medicine is. Look at Grey’s Anatomy. How many people love that show? Every time I’m talking to a group of people, half the hands go up. People love that show.

KM: Mm-hmm.

JZ: It’s the most ridiculous … I mean, sorry, but it’s one of the most unrealistic shows about technology, and what it can do; about what to expect from the health care system that’s out there.

KM: Do you feel it instills in people the idea that technology can perform a lot of miracles?

JZ: Yes, I do. They think doctors are pulling rabbits out of their scrubs every week.

KM: [laughs]

JZ: And we all love that …

KM: … because we all wish it was true.

JZ: We all do.

KM: That’s why shows like that are popular, right?

JZ: 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.

KM: So, it’s an institutionalized fear of death?

JZ: Yes. Institutionalized and societalized. 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.

End of Life

KM: It was very clear in the Netflix documentary Extremis. It seems like it’s very much on the family level. But 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 advanced directives.

JZ: 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 conveyor belt.

KM: 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?”

JZ: Yes.

KM: Not that that can’t happen, but …

JZ: Yes. It does.

KM: I watched it ([Extremis] with my husband last night, and I said, “You know, sometimes, the miracle is when you die now, not after six months of extreme suffering.”

JZ: Right.

KM: Sometimes, that’s the miracle.

JZ: Right, right. My book and the movie came out at the same time, so, as you can imagine, there were a lot of opportunities to speak in front of communities and crowds. I talk a lot about some of the solutions to this problem, and I think there are three major possibilities.

One is the first one, which is what you’re alluding to, that is, to redefine success. I used to think that success could only mean fighting the disease and winning. Actually, since I was this single-minded, “save life at all cost,” doctor, I’ve learned so much in these travels that I’ve made. So much about other kinds of successes, as you are talking about.

KM: But it must seem like it reflects on both the medical professionals and the hospitals. It’s like a, “not on my shift,” kind of thing.

JZ: Yes.

KM: Is that correct?

JZ: Oh, terribly. Yes. In fact, some of the metrics that we use to measure success, the quality of hospitals, for example, are things such as the thirty-day mortality rate. This is something that surgeons and proceduralists, like cardiologists, are graded on: How many of your patients are dead at thirty days? So, you can imagine if that is what you’re being graded on as success, then what’s going to happen, what does happen, is you’re going to have surgeons just wanting to do everything they can to keep patients alive for thirty days. Then after thirty days, the thinking changes to, “Okay. Well, then, now we can tend to what the patient might want, or what the family might want.” But keep that patient alive for those thirty days because if not, you look like a bad doctor.

KM: Right, and meanwhile, welcome to those thirty days for that person. That’s a long and important thirty days.

JZ: That’s right.

KM: But completely understandable.

JZ: Yeah, and by the way, don’t forget if you’re on the end of life conveyor belt for thirty days, what’s going to happen at day thirty-one? You’re just going to all of a sudden miraculously get off that conveyor belt? No, you’re likely stuck on that conveyor belt even after the thirty days.

KM: That makes sense, and why wouldn’t a doctor want to do that? I mean, everyone has to do their best to be good in their role. It reminds me as a pregnant woman, a little bit of what can happen with birth as well.

JZ: Yes.

KM: There’s so much fear of the birth process, fear that the woman’s body doesn’t naturally just know what to do. So, they jump in and say, “Well, we better induce.” “Well, we better give you an epidural.” There are all kinds of interventions which then end up often creating more C-sections and a higher mortality rate for mother and baby, which is just crazy.

JZ: Yes. Very true. Very, very true. Definitions of success can be very entrapping.

KM: I know that you’re a mother, and you talk about speaking a lot with your teenagers about death. Also, you piloted the Death Ed program. So, I was wondering if you could tell us a little bit about that?

JZ: Sure. It’s kind of funny, because I would say it started when I began learning about what we’re missing in the hospital. It was calling out my own moral distress, being able to actually unroof and look down deeply into my own suffering as a witness to this process. It’s been ten years that I’ve been practicing palliative care, and probably a couple of years before that I was starting to notice that this was really not feeling right.

I’m a processer, so I would talk a lot about it. I would write about it. I would tell stories. “Can you believe this happened?” Telling stories to my friends. We have Shabbat dinner at my house every Friday, and I’d almost always bring a story to the dinner table about something that happened that was just so morally distressing. I guess my kids have gotten used to hearing these conundrums, these stories that are very heartbreaking. And my daughter said to me about, I don’t know, six months ago, she said, “Mom, can we have one Shabbat dinner where we don’t talk about death?”

KM: [laughs]

JZ: So, death is a real part of our family conversation.

KM: Whereas, for other families it’s, “Can we have one dinner where we do talk about it?”

JZ: [laughs] Right. It’s always been part of our family conversation. I wouldn’t say my kids jump to the conversation, like, “Well, let’s talk to Mom about this!” It just is. So, I wrote this piece that went into the New York Times called, “First Sex Ed, Then Death Ed.” And by the way, I had spoken to my kids’ schools. I had been the Sex Ed teacher at my daughters’ school, because there wasn’t anyone else to do it. I was the only doctor of the parents in the class. There was one other possible person, but she didn’t want to talk about Sex Ed to the kids. So, I created this slide deck, and I taught these kids about Sex Ed, and it was really important. I didn’t want to do it, but once I did, I thought, “How could I not do this? I have to be the one to teach my kids about this incredibly important aspect of life.”

And so, I thought about it over a few years, and I thought, “Well, why am I teaching Sex Ed and not Death Ed?” I mean, these kids need to understand death, too. And then, that was right around the time that the movie [Extremis] had come out. So, when my friend, Dawn Gross, who’s another palliative care doctor, approached me and said, “Hey, you know what? There’s this challenge called the ‘Reimagine End of Life Challenge’ in San Francisco that’s being sponsored by OpenIDEO [A worldwide idea and impact generating network]. Do you want to submit something?” I told her about this article that was in the queue to be published. So, we created a prototype for a Death Ed class. It included showing the film and then talking about it and processing through it with the kids. This prototype, this program that we had just conceived of, that wasn’t even real, ended up being one of the top ten ideas at this festival.

And then I thought, “Oh my goodness. Well, we better do something about it.” So, just on a whim I asked my kids’ school, which is a somewhat progressive private school, “Would you be interested in this?” They said, “Yes, sure!” And I thought, “Wow, really? You really are okay with me coming in and talking to kids about death?” So, we did it. We did it at my kids’ school a couple of times. We did it at her kids’ school a couple of times, and I now teach it at a program in our hospital called Health Path, which is an Oakland public school program for high school kids who are interested in a career in medicine. And so, it’s been amazing to do it.

I’ve learned it’s kind of scary to talk about death to kids who aren’t mine. If they’re my kids, and they freak out, or whatever they might do (my kids don’t freak out), I know it’s my kid. I get to take that risk. But when it’s someone else’s kid, it’s such a taboo subject, you’re wondering who’s going to call you back, right?

KM: Yes, I can imagine the angry phone calls you could get.

JZ: Angry phone calls, and, “Little Johnny came home from school. What were you talking about to Johnny?”

KM: Mm-hmm.

JZ: Before we taught it, the school prepared the parents and sent a letter home. It wasn’t a surprise. There were no concerns voiced before we did it. But then when the movie was being shown there were tears. There were tears! There were definitely kids crying. The first few times I felt, “Ohhhh!  Oh, my goodness!  Oh, my goodness!  I made some kid cry!  This terrible!  I’m traumatizing these kids!” And I would walk up to them after the movie and ask, “Are you okay?” And they were always okay. They were always okay. They would say things like, “Yeah. That was upsetting, but you know, I’m glad I saw that.” And that is consistent now. I mean, I’ve now done this in front of a couple hundred kids, and no one has run out of the room screaming. I haven’t gotten any letters from psychiatrists, or parents, saying, “My kid is traumatized.”

And I think that it’s setting people up. These kids have no idea about any of the stuff that I’m talking to them about. This is the entrance for them into a new world that hopefully will be something they’re aware of going forward.

KM: It’s amazing. I feel like there’s no way today to shield kids that age from death anyway.

JZ: Yes.

KM: Because they are all on their phones, and so, they have horrific news in their pockets. The amount of school shootings we’ve had in 2018, you don’t think the kids think about that when they go to school?

JZ: Yes.

KM: Death is something you can’t keep out anyway, right?

JZ: Yes.

KM: It’s something that you can’t seal out of your life.

JZ: Right, but I would argue that even the school shootings and the terror and the things that we see in the world today still don’t provide the same knowledge and awareness they need to understand the end of life conveyor belt. And that’s what I want people to learn. When people say, “Well, what’s the most important thing you teach in Death Ed?”, my feeling is that the lowest hanging fruit, and the thing that I most want to communicate to these kids, is an understanding of the end of life conveyor belt, because they’re all going to have grandparents and people in their lives and maybe even friends who end up in an intensive care unit with a serious illness. If they have some image and some introduction to the end of life conveyor belt, they may be a voice of reason in the thinking through of the next steps for that particular patient. It’s different than “Oh, here five people died, and here six people died.” What I want people to understand is, “What’s it like to be placed on life support for six months, for eight months, for ten months? Is that something that would be acceptable or not?” And that is a question I want these kids to start grappling with.

KM: It’s also amazing for them to be talking about death at all. For me, the death ed idea seems transformative. It really could change the thinking in one generation. It’s not even a humongous shift that needs to take place, just some level of awareness, conversation. I loved that in that class, there was an exercise involving candy.

JZ: [laughs] You have to use candy.

KM: Which is always smart.

JZ: [laughs] You have to. I mean, you have to bring something to them.

KM: This is why no one complained to their parents, right?

JZ: [laughs] Right. There was a lot of candy.

KM: There was candy and a movie.

JZ: A lot of candy. [laughs]

KM: I think you said that everybody got a handful of Skittles, or candies of some sort, and they put them in a jar if they had lost someone. Each one corresponded to someone they had lost: a pet, or a grandmother or a parent. And I think you said that everyone put some candy in the jar.

JZ: Right, and we didn’t say, “Put three yellows if you’ve had three family members die.” It was just one to represent each group, and there were tons of Skittles in these jars every time. It just brought this alive, if you will, to the group that, “Wow, this is a part of our lives. We are all in touch with death, and this is a real part of our lives.”

KM: That’s such a powerful image to me, because it says, “We really have this in common, this very potent thing, and we’re probably not talking about it.”

JZ: Yes. Absolutely.

KM: What was the atmosphere at the end of death ed?

JZ: Good question. You know, it varied a little bit from class to class. In some cases, there was a little bit of relief, and sometimes it was relief on my part. [laughs]

KM: [laughs]

JZ: And I remember feeling that same thing at the end of the sex ed classes, quite honestly. I mean, these are not easy topics. I’m not going to pretend that there was some major revelation, and all of a sudden everybody was completely comfortable with death. You know this is hard to talk about. In fact, that’s why it’s so important for us to bring it into the school curriculum because nobody really wants to lean into that conversation. And nobody wants to lean into a sex ed conversation. It needs to be a part of the curriculum. And we know the data on sex ed. It’s very clear that it improves the health and wellness of a society. So, in places that have stopped teaching sex ed in favor of abstinence, they do worse in terms of sexually transmitted diseases and unwanted pregnancies.

Although we don’t have data on it, yet, I believe it’s the same for death education. That when you teach a society through their educational system in a regimented way, where everyone’s accessing this information, I do believe that you’re going to end up with a much healthier community of people. I’d love to see that studied, and I’d love to see it happen; and I’m waiting.

KM: As you say it, I’m thinking, “Oh, education works?” [laughs]

JZ: [laughs]

KM: I can’t believe we haven’t done this yet. Can you say, before we move on, really quickly, what the game was that you all created for this program?

JZ: There’s a game called, “Go Wish.” It’s only one of many. There are many ways to enter into this. Ultimately, what’s the take home you want kids to walk away with? Again, there are many ways to teach sex ed. Sometimes, people can teach it in sort of a more cultural awareness way, for example, “What does this culture do in terms of thinking about death? What does that culture do?” I’d say that’s all very, very important, but if you have a limited amount of time and a limited amount of real estate in a high school curriculum, I think there are two things that are important for a kid to come away with.

One, is an understanding of the end of life conveyor belt, which to me, is one of the biggest areas in the public health crisis that we find ourselves in right now. If people understand that this is a reality, that this conveyor belt is out there, we will all be a part of it unless we opt out because that’s the way it works. That’s an important piece of information to explain to people. We’re not doing a good job in the health care culture of explaining that to our patients and families. So, if we can explain that to a group of people at a certain age, I think that is huge.

And the second thing I think is critically important is the concept of advanced care planning, which I’m sure you’re extremely familiar with. You’ve got to start talking about it early, when you’re thinking about what’s important about the way you live, before you get sick, before you’re a patient. And so, advanced care planning can be accessed by talking and by discussions that bring death into your conversation with your loved ones. There are many games like, “Go Wish,” but I think this particular game (at gowish.org and by the way, you can get the cards for $7.00) is just kind of a fun game that uses cards to get you talking about your preferences and your priorities and then sharing those with your loved ones. So, that’s the second step of what I think is important about death ed. Understanding the end of life conveyor belt is the first, and the second is learning how to start the conversation. I think these cards can help.

KM: I’m very familiar with advanced directives, and yet, I don’t, I’m embarrassed to say, I don’t have one. And I have a question. As a thirty-one-year-old woman, do I get, should I get, a DNR [Do Not Resuscitate order]? I mean, I’d like to be resuscitated.

JZ: No.

KM: Right?

JZ: The answer to that, and this isn’t meant to sound judgmental …

KM: … Yes …

JZ: … is absolutely not, in my opinion. Now, that may be my bias as an ICU doctor. I would never … I cannot imagine why a healthy thirty-one-year-old woman would not want to benefit from the potential save of our technology.

KM: Right.

JZ: Because when I talk about an end of life conveyor belt that is not saying that technology is bad. Technology is wonderful.

KM: Yes.

JZ: I have personally saved a lot of lives with technology. The end of life conveyor belt, which sounds like a sort of pejorative take on technology, may not be pejorative if that fits with someone’s values and preferences. But the end of life conveyor belt is a concept that you’re starting with a person who’s dying already. So, you, clearly, as a thirty-one-year-old, healthy woman, are not dying. I mean, we’re all dying …

KM: [laughs]

JZ: … but you are not in the final stages of dying.

KM: I’m not acutely dying.

JZ: You are not acutely dying. So, for people who are frail, terminally ill with metastatic cancer, or elderly, those are people for whom continued use of this technology in a default, non-reflective way is what I call the end of life conveyor belt. But the use of technology when it actually might restore someone to health, or to a quality of life that would be acceptable to them, even if it isn’t perfect health, to me that’s good.

KM: Yeah. Hallelujah.

JZ: So, no, an advanced directive is not for a thirty-one-year-old woman. I’ve seen people, surprisingly, who are in their seventies and they’re healthy, or their eighties and they’re healthy, and they very proudly tell me, “I filled out my POLST [Physician’s Orders for Life-Sustaining Treatment].” That is, a POLST form which is different from an advanced directive, by the way.

KM: Yes.

JZ: A POLST form is a doctor’s order saying, “Do not resuscitate this person.” I’ve said to such people, several times, “Do you understand that means you’re agreeing that even if you have something that’s completely reversible, something you can completely recover from, something from which we can get you right back to where you are right now, you’re saying you don’t want that? Is that really what you want?” Sometimes, I feel people have a reverse reaction to the end of life conveyor belt. They’ve learned about it and they think, “There’s no way I want any technology.” Well, I wouldn’t recommend that either. I think the whole point about technology is that it can be used for good. I see it, I do it, I respect it. I’m so grateful to live in the time that I live in right now. But everything that we do needs to be thought about in terms of benefits and burdens, and that’s what we’re not doing. So, this unreflective approach to using technology is what I’m protesting, not the use of technology.

KM: People often don’t know the difference between a DNR and an advanced directive. So, it would be a good idea for me to have an advanced directive that says, “If I’m ever hooked up to a feeding tube and I’m never going to be able to breathe or eat again on my own because of some horrific accident,” which can happen to someone at any age, “In that case, I don’t want to be kept alive on a machine for six months.”

JZ: Exactly.

KM: You can make those sorts of things clear.

JZ: Yes. So, let me just clarify that. Just as you say, the advanced directive is more of a statement of philosophy. Perhaps I’m the type of person who would want to be kept alive until the last nanosecond, no matter what. Or I’m the other type of person who, if my quality of life is not what I would want it to be, would not want to be kept alive at all costs. And, by the way, what’s an acceptable quality of life is going to be different for everybody.

KM: Yes.

JZ: So, that election, the selection of which check box you choose on the advanced directive, needs to be further clarified and detailed by conversations and playing “Go Wish,” so that those around you who are designated as your surrogate really know what that means for you. But that’s a philosophy, that’s not a doctor’s order.

KM: Yeah.

JZ: A DNR or a POLST are an actual doctor’s orders stating, “Do not do this particular thing.” That’s not a philosophy. That’s a directive about a specific type of intervention. People who have determined that technology would never restore them back to a quality of life they would find acceptable do need to fill those out. That’s a different kind of situation. I hope that makes sense.

KM: That does. That makes a lot of sense, and it’s very helpful, and I think we should all know this, right?

JZ: Yes.

KM: But we don’t all know this.

JZ: Yes, yes, yes, yes. And just to make you feel better, I wrote about this in my book, but I had not filled out my advanced directive, and I thought, “If anybody should have a great advanced directive, it should be me.”

KM: Yeah.

JZ: And I hadn’t filled it out for years. So, I talked about the difficulty and the struggle that I had with filling out my own advanced directive.

KM: It’s part of the whole problem. It’s on the institutional, societal level, as we’ve said, and it’s also very human to not want to go there.

JZ: It really is. It really is.

KM: Well, further to that point, I always ask our guests if you have one wish for your own end of life, what’s that wish?

JZ: Mmm.

KM: It can be more than one.

JZ: Well, I know that what I want as I’m passing through this world are several things that are personally important to me. These are things that come out whenever I play “Go Wish.” Like, what are the most important things? And I know that it’s really important to me that I feel connected to the people that I’m close to in my life; that we have really good interactions that are satisfying and that are filled with good closure, and comfort, and love and, hopefully, some kind of physical connection. Maybe they’re in the same town, and I get to spend time with them over the days and weeks before I die. That there are people snuggling me and holding my hand. I don’t want to be alone, lonely. Even if I get to be with my kids on the iPad. It doesn’t have to be physical proximity, but just emotional proximity. And I don’t want to be in pain, which unfortunately so many of my patients are.

I don’t want to be compromised in terms of my dignity and for me, by the way, dignity doesn’t mean that I don’t want people having to take care of me. I’m okay if I need to get a bath from somebody else or even if maybe I need someone to change a diaper. I can live with that, as long as I’m still being looked at as a person. For me, that means I need to be able to interact with people cognitively and emotionally. So, I just hope that I feel like my humanity is still intact as I’m dying. I hope I’m at home. There’re a lot of things that go around just being a human being until the very end.

KM: Thank you. And because of your role and unique perspective on this, I also want to ask you for our society. If you had a wish for us collectively for end of life, what that might be?

JZ: Yes. It comes down to one word, and that’s courage. I think if we can approach death with courage and an ability to really look at it in the eye, whether we’re patients or families, communicating information back and forth takes courage. Or whether you’re the physician, or the nurse, or any health care provider caring for a patient, it comes down to having the courage to be honest and to give prognostic information.

It’s courage that’s required to grease the wheels of an honest, a humanistic approach to death and dying, because it’s easy to cower in the face of death and just pretend it’s not really here, to just keep doing automatic behaviors that end up causing so much suffering. So, I believe that what this is going to take is courage on all of our parts.

KM: Mm-hmm.

JZ: I hope we can summon it.

KM: Okay. Well, that leads right into my final question because I think it could be an example, and an inspiration, for the rest of us. This is what I was wondering watching Extremis: How do you face, on a daily basis, people in that poor of a health condition? I mean, it’s hard to watch that film for 24 minutes of my day, and you face that all day, every day. How do you face that? As a human, what do you have to summon from within yourself, and how do you move forward?

JZ: Well, it’s a good question, and I will say that some days are harder than others. Some days, the days that feel really good, are the days when I can restore some trace of humanity to a patient, and I can give them some feeling of being humanized again. Even within the walls of the hospital or within the walls of the ICU, I can make them feel like a person again. That is a good day. And the days which are really hard for me are the days I can’t do that, because there are so many other things going around, whether it’s the hospital culture, the medical culture, or the family demands. These are all things that sometimes can raise real moral distress for me.

And so, I’m not going to lie and say, “Oh, all of the sudden I learned about palliative care, and everything’s great and easy.” We’ve got so many challenges ahead of us, even within medical culture, to really bring humanistic care to patients at the ends of their lives. We’ve got a tough decade ahead of us. We’ve got lots of work to do, and some days are better than others.

KM: Thank you so much. Your courage in the face of all this is honestly inspiring.

JZ: Thank you.

KM: And I think it’s the kind of courage we all have to draw upon just to have this conversation with our own parents and loved ones.

JZ: Yes.

KM: So, Dr. Jessica Zitter, where can we find more of your work and learn more about your philosophy and all the great stories and experiences you mentioned?

JZ: Well, the place I would direct you first is to my book, which I put my heart and soul into. It really pulls it all together in a story format to show this conundrum and this challenge from a whole variety of different angles and perspectives. And at the end of the book, I have put together what I think is a very robust appendix that really takes people through steps preparing for this. It’s a six-step process that leads to a place of real activation, and clarity. I really would love to promote that to your audience. I think that’s my main lever for culture change.

And the other thing I would recommend is for people see the movie, Extremis, which you’ve alluded to several times. It’s twenty-four minutes, and it provides a real insider’s view into what’s going on in the intensive care unit, and what is the end of life conveyor belt.

And I’m also really excited to be working on a variety of different multi-media experiences, where we’ve created an experience for a variety of different types of lay audiences and also different types of medical trainee audiences.  We use story to get people to start to connect with this topic and start to feel personally motivated to do something differently. Whether you’re a lay person or an anesthesia resident at UCSF [University of California at San Francisco], which is where we piloted it last month. It’s starting to help people understand why it’s so important to think about this issue and to start to draw on and learn some new skills. I think it’s great that we’re trying to teach doctors new skills about how to communicate, but it really is going to require that they be personally invested from an emotional perspective, and I think that is what we’re going to do through stories. So, I’m hoping that we’ll get these programs into a variety of different teaching programs and lay community settings as well.

KM: Thank you so much, and thanks for taking time out of your busy triple life as a mom, a doctor and a public figure …

JZ: [laughs]

KM: … to talk with us. We really appreciate it.

JZ: Oh, it was such an honor to be with you. Thank you.

KM: Thank you.

Comments