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.
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Dr Jessica Zitter - interview end of life

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: It’s the When You Die podcast. I’m Kelly MacLean. My guest today is Dr. Jessica Zitter. Dr. Zitter practices ICU and palliative care at the County hospital in Oakland. 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 get on Netflix now. It’s about 24 minutes long, and it’s 24 minutes that really could 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 conveyer belt,’ which once you learn a little more about it, might be something that you would really 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 conveyer belt, but I will let her tell you the rest.

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

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

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

Dr. Jessica Zitter: Oh … Good question. There are so many of them that I had to write a book about it. [laughs]

Kelly MacLean: Mm-hmm. [laughs]

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

End of Life Care

So, gosh, story after story, I have so many. I mean, I’m just trying to think, you know, 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 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, 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.

Kelly MacLean: As a doctor, do you have a … I mean, you have a unique perspective as to why somebody might have that experience. Do you have a theory as to why a lot of … 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?

Dr. Jessica Zitter: It’s bigger than the doctor. It’s bigger than the patient. It’s … The best thing I’ve … This is what I described in my book. It’s this concept of an ‘end of life conveyer belt.’ I feel like there is this … We have created this thing in American culture in the past hundred years, or almost 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 it’s workers as an ICU doctor, trained in the way that I was at some of the best programs in the country. 

We, you know … We were just taught to believe that this miracle of technology, that really is something that’s only arisen here in the United States since the 40s, 50s … Really the 60s, 70s, 80s is 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-

Kelly MacLean: Mm-hmm.

[00:05:00]

Dr. Jessica Zitter: And the ancient … God knows what. There’s stories, and myths, and stuff 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 conveyer belt, and it’s sort of bigger than all of us. 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. Although, I think nurses were the to first wake up to this, and say, “Wait a minute.“

Kelly MacLean: Mm-hmm.

Dr. Jessica Zitter: And we just kind of keep … It’s this default, churning machinery that’s going, and going, and going, and I don’t … I mean, yes, 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, that then again 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, you know, Grey’s Anatomy. How many people … Every time I’m talking to a group of people, like, half the hands go up … People love that show-

Kelly MacLean: Mm-hmm.

Dr. Jessica Zitter: 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, and I-

Kelly MacLean: Do you feel like it instills the idea in people that technology can preform a lot of miracles?

Dr. Jessica Zitter: Yeah. I do. I think they think, you know, doctors are pulling rabbits out of their scrubs every week-

Kelly MacLean: [laughs]

Dr. Jessica Zitter: And we all love that-

Kelly MacLean: Because we all wish it was true-

Dr. Jessica Zitter: We all do-

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

Dr. Jessica Zitter: 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.

Kelly MacLean: Right. So, it’s kind of an institutionalized fear of death.

Dr. Jessica Zitter: 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.

End of Life

Kelly MacLean: Yeah, and then it was very clear in the Netflix 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 advanced directives.

Dr. Jessica Zitter: 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.

Kelly MacLean: 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?”

Dr. Jessica Zitter: Yeah, yeah.

Kelly MacLean: Not that that can’t happen, but-

Dr. Jessica Zitter: Yeah. It does.

Kelly MacLean: It’s also … I watched it 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.”

Dr. Jessica Zitter: Yeah. Right.

Kelly MacLean: “Sometimes that’s the miracle.”

Dr. Jessica Zitter: Right, right. One of the things I talk about, and I …  You know, I speak … My book and the movie came out at the same time, and so, as you can imagine, that … There were a lot of opportunities to speak in front of communities, and crowds, and people, and 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’s 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 … These travels that I’ve made since I was this, you know, first … You know, one minded “save life at all cost” doctor, I’ve learned so much about other kinds of successes, as you allude to.

Kelly MacLean: But it must even feel like it reflects on the medical professionals and the hospitals, you know, if someone’s like … It’s like a “not on my shift” kind of thing-

Dr. Jessica Zitter: Yeah.

Kelly MacLean: Is that correct?

Dr. Jessica Zitter: Oh, terribly. Yeah. In fact, some of the metrics that we have to sort of measure success, quality of hospitals, are things like, you know, the 30 day mortality rate, which is something that surgeons, and proceduralists, you know, cardiologists, are graded on, which is how many of your patients are dead at 30 days? So, you can imagine if that is what you’re being graded on as success, then what’s going to happen, which happens, is you’re going to have, you know, surgeons just wanting to do everything they can to keep patients alive for 30 days, and then after 30 days, “Okay. Well, then … Now we can, you know, tend to what the patient might want, or what the family might want.” But keep that patient alive for those 30 days, because if not you look like a bad doctor.

[00:10:00]

Kelly MacLean: Right, and meanwhile, welcome to those 30 days for that person … That’s a long 30 … That’s a long, and important 30 days.

Dr. Jessica Zitter: That’s right, and-

Kelly MacLean: But completely understandable.

Dr. Jessica Zitter: 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.

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

Dr. Jessica Zitter: Yes.

Kelly MacLean: And it’s like there’s so much fear of giving birth, and that the woman’s body doesn’t naturally just know what to do that then they jump in, and say, “Well, we better induce,” “Well, we better, you know, give you an epidural,” 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.

Dr. Jessica Zitter: Yes. Very true. Very, very true. Definitions of success can be very trapping.

Kelly MacLean: So, I know you’ve done a lot of work with … Well, I know that you’re a mother, and you talk about how you speak a lot with your kids, your teenagers, about death, and also that you piloted the … This Death Ed program. So, I was wondering if you could tell us a little bit about that? 

Dr. Jessica Zitter: Sure. My … You know, my kids … It’s kind of funny, because I would say that really since I started learning about what we’re missing in the hospital, and also calling out my own moral distress, being able to actually un-roof, and look at deeply my own suffering as a witness to this process … That’s, you know, it’s been ten years that I’ve been practicing palliative care, and, you know, probably a couple of years before that I was starting to really notice that this was really not feeling right, and so, I … 

I’m a processer, and I would sort of talk a lot about it. I would write about it. I would be telling stories. “Can you believe this happened?” Telling stories to my friends. We have Shabbat dinner at my house, and I’d almost always be bringing a story about something that happened that was just so sort of morally distressing to the dinner table, and my kids are … I guess, have gotten used to hearing these conundrums, and these stories that are very heart breaking, and, you know, 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?”

Kelly MacLean: [laughs]

Dr. Jessica Zitter: So, death is a real part of our family conversation, and-

Kelly MacLean: Where for other families it’s like, “Can we have one where we do?”

Dr. Jessica Zitter: [laughs] Right. So, it’s always sort of been part of our family conversation. I wouldn’t say my kids jump to the conversation. It’s not like they like … “Well, let’s talk to Mom about this!” It just is. And so, I wrote this piece that went into the New York Times called First Sex Ed, Then Death Ed, about, you know, why … And by the way, I had spoken to my kids schools, I had been the Sex Ed teacher at my daughters’ schools, because there wasn’t anyone else to do it. I was the only doctor in the class. There was one other person, and 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 had come out, so I … 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. Do you want to submit something?” I told her about this article that was sort of in the queue to be published. So, we created this sort of prototype for a Death Ed class, and it included showing the film, and then talking about it, and processing through it with these kids, and it … This protocol, this program that we had just conceived of, that wasn’t real, ended up being one of the top ten sort of ideas at this festival. 

[00:15:00]

And then I thought, “Oh my goodness. Well, we better do something about it.” So, I just on a whim asked my kids’ school, which is sort of a progressive private school, “Would you be interested in this?” They said, “Yeah, sure.” And I thought, “Wow, really? You really are okay with me coming in, and talking to kids about death?” And so, we did it. We went in there, and we’ve now, you know … 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 a program for kids in the Oakland public schools who are in high school, and are interested in a career in medicine. And so, it’s been amazing to do it. 

What I’ve learned from it is it’s kind of scary to talk to kids who aren’t mine about death, because when if they’re my kids, you know, if they freak out, or whatever they do, which my kids don’t freak out … You know, it’s my kid. I … I, you know, get to take that risk. But when it’s someone else’s kid, you know, it’s such a taboo subject, you’re kind of wondering who’s going to call you back, right?

Kelly MacLean: Yeah. You can imagine the angry phone calls you could get.

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

Kelly MacLean: Mm-hmm.

Dr. Jessica Zitter: And you know, let me tell you, when we were teaching it, there were … You know, we … The school prepared the parents, and sent a letter home, and everything. It wasn’t … There were no concerns voiced before we did it, but then, you know, when the movie was being shown there were tears. There were tears. There definitely kids crying. I … The first few times, like, “Ohhhh! Oh my goodness! Oh my goodness! I made some kid cry! This terrible! I’m, you know, I’m traumatizing these kids!” And I would kind of walk up to them, you know, after, “Are you okay?” And I’m, you know … And they were always okay. They were always okay. They were 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, you know … You know, letters from psychiatrists, or parents, saying, “My kid is traumatized.”

Kelly MacLean: Mmm.

Dr. Jessica Zitter: And I really think that it’s sort of setting people up … These kids have no idea about any of the stuff that I’m talking about to them, and this is in the entre for them into a new world … That hopefully then will be something they’re aware of going forward.

Kelly MacLean: It’s so amazing. And for kids today, I feel like there’s no way to shield kids that age from death anyway.

Dr. Jessica Zitter: Yeah.

Kelly MacLean: Because they are all on their phones, and so, they have horrific news in their pockets. And it’s affecting … I mean, the amount of school shootings we’ve had in 2018, you don’t think the kids think about that when they go to school?

Dr. Jessica Zitter: Yeah. Yeah.

Kelly MacLean: I mean, in many forms-

Dr. Jessica Zitter: Yeah.

Kelly MacLean: Death is … It’s something, like, you can’t keep out anyway, right?

Dr. Jessica Zitter: Yeah.

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

Dr. Jessica Zitter: Right, but I would argue that even the school shootings, and the terror, and the things that we see in the world today, it’s still not the same knowledge and awareness that they need to understand the end of life conveyer belt-

Kelly MacLean: Yes.

Dr. Jessica Zitter: And that’s what I want people to learn. When I … When people say, “Well, what’s the most important thing that you teach in Death Ed?” My feeling is that the lowest hanging fruit, and the thing that I most want to get to these kids is an understanding of the end of life conveyer belt, because they’re all going to have grandparents, and, you know, people in their lives as they go through, and maybe even friends, who end up in an intensive care unit with a serious illness, and if they have some visual, and some introduction to the end of life conveyer belt, they may be a voice of reason in the thinking through-

Kelly MacLean: Mm-hmm.

Dr. Jessica Zitter: The next steps for that particular patient. And I … So, it’s different in a way then, you know, “Oh, here, you know, 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.


Kelly MacLean: Right, and also just amazing for them to be talking about death at all though. For me, the Death Ed idea just seems so transformative, and, like, it really could change that in one generation. It’s almost like it’s not even a humungous shift that needs to take place-

Dr. Jessica Zitter: Yeah.

Kelly MacLean: Just some level of awareness, conversation, and I loved … I remember you said that in that … In that class, there was an exercise involving candy-

Dr. Jessica Zitter: [laughs] You have to use candy.

Kelly MacLean: Which is always smart.

Dr. Jessica Zitter: [laughs] You have to. I mean, you have to bring something to them-

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

Dr. Jessica Zitter: [laughs] Right. There was a lot of candy.

Kelly MacLean: There was candy, and a movie.

Dr. Jessica Zitter: A lot of candy. [laughs]

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

[00:20:00]

Dr. Jessica Zitter: Right, and it wasn’t even … I mean, we didn’t even have, like, you know, “Put three yellows if you’ve had three family members.” It was just one to represent each group, and there were tons of Skittles in these jars every time, and it just sort of brought this, if you will, this alive to the group, that, “Wow, this is a part of our lives. We are all in touch with death, and, you know, this is a real part of our lives.”

Kelly MacLean: Yeah. That’s such a powerful image to me, because it’s like, “Wow, we really have this in common, this very potent thing, and we’re probably not talking about it.”

Dr. Jessica Zitter: Yeah. Absolutely. 

Kelly MacLean: What was the feeling walking … For the … What was the atmosphere at the end of Death Ed?

Dr. Jessica Zitter: 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]

Kelly MacLean: [laughs]

Dr. Jessica Zitter: 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, you know, major revelation, and all of the sudden everybody was completely comfortable with death, and …  I think, you know, this is … It is hard to talk about, and, 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. You need to have it in there as part of the curriculum. And we know the data on Sex Ed. It is very clear that it improves the health and wellness of a society, and in places that have stopped teaching Sex Ed in favor of abstinence only, you know, education, they do worse in terms of, you know, sexually transmitted diseases, and unwanted pregnancies. 

It’s the same thing, I believe, although, we don’t have data on it yet, 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 and well community of people, and I’d love to see that studied, and I’d love to see it happen, and I’m waiting. 

Kelly MacLean: Yeah. As you’re saying it, I’m like, “Oh, education works?” [laughs]

Dr. Jessica Zitter: [laughs] 

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

Dr. Jessica Zitter: Yeah. I mean, there’s a game called ‘Go Wish.’ I mean, it’s only one of many. There’s many ways to enter into this … You know, ultimately, what’s the take home, right? That you want kids to walk away with. In my opinion, and again, there’s many ways to teach Sex Ed, you know, sometimes people can teach it in sort of a more cultural awareness way, “Well, you know, what do … What does this culture do in thinking about death? What does that culture do?” For me, in a way, I’d say that’s all very, very important, but if you have a limited amount of time, okay, and a limited amount of real estate in a high school curriculum, the things that I think are important for a kid to come away with are two things. 

One, an understanding of the end of life conveyer belt, which to me, is one of the biggest levers in the public health crisis that we find ourselves in right now. If people understand that this is a reality, this conveyer belt is out there, you will all be a part of it unless you opt out, because that’s the way it works. That’s an important piece of information to explain to people, and 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-

Kelly MacLean: Mm-hmm.

Dr. Jessica Zitter: So, that they know that, that I think 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, 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, and I think this particular game, and there’s many like them, called Go Wish … At gowish.org, by the way, you can get the cards for $7.00 … Is just kind of a fun game that allows you to use cards in a way to sort of get you talking about your preferences, and your priorities, and sharing them with your loved ones. So, that’s just another piece of … 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, and I think these cards can help.

Kelly MacLean: Mm-hmm. Yeah, 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 31 year old woman, do I get … Should I get a DNR? I mean, I’d like to be resuscitated.

Dr. Jessica Zitter: No.

Kelly MacLean: Right?

Dr. Jessica Zitter: The answer to that, and this isn’t meant to sound judgmental-

Kelly MacLean: Yeah.

[00:25:00]

Dr. Jessica Zitter: Absolutely not, in my opinion. Now, you know, that may be my bias as an ICU doctor. I would never … I cannot imagine why a healthy 31 year old woman would not want to benefit from the potential save of our technology-

Kelly MacLean: Right.

Dr. Jessica Zitter: Because I am not saying, by the way, when I talk about an end of life conveyer belt that is not saying that that technology is bad. Technology is wonderful.

Kelly MacLean: Yes.

Dr. Jessica Zitter: I have personally saved a lot of lives with technology. The end of life conveyer belt, which sounds like a sort of pejorative take on technology, it … And by the way, it may not be pejorative if that fits with someone’s values and preferences, but the end of life conveyer belt is a concept of … You start with a person who’s dying already. So, you, clearly, as a 31 year old, healthy woman, you are not dying. I mean, we’re all dying-

Kelly MacLean: [laughs]

Dr. Jessica Zitter: But you are not … You’re not in that final stages of dying-

Kelly MacLean: I’m not, like, acutely dying.

Dr. Jessica Zitter: You are not acutely dying. So, for people who are frail, you know, terminally ill, with metastatic cancer, elderly, those are people for whom continued use of this technology in a default, non-reflective way, that’s when I call it the end of life conveyer 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, that is a  … To me, that’s good.

Kelly MacLean: Yeah. Hallelujah.

Dr. Jessica Zitter: So, no, a 31 year old woman … And I’ve seen people, surprisingly, who are … You know, not 31, but, like, you know, in their 70’s, and they’re healthy, or 80’s, and they’re healthy, and they very proudly tell me, “I filled out my POLST … “ A POLST form, which is different from an advanced directive, by the way.

Kelly MacLean: Yes.

Dr. Jessica Zitter: A POLST form is a doctor’s order saying, “Do not resuscitate this person.” And I think, and I’ve said to them, you know, several times, “Do you understand, you know, that that means that you’re saying that even if you have something that’s completely reversible, recoverable, and 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?” And I’m … Sometimes I feel like people have a … The reverse reaction to the end of life conveyer belt. They’ve learned about it, and they’re like, “There’s no way I want any technology.” Well, I wouldn’t recommend that either. I think the whole point about technology is, technology 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 am protesting-

Kelly MacLean: Yes.

Dr. Jessica Zitter: Not the use of technology.

Kelly MacLean: Yeah, and then people 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, and say, you know, “If I’m ever hooked up to a feeding tube, and I’m never going to, you know, 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.”

Dr. Jessica Zitter: Exactly.

Kelly MacLean: You can kind of make those sorts of things clear.

Dr. Jessica Zitter: Yes. So, let me just clarify that-

Kelly MacLean: Yeah.

Dr. Jessica Zitter: Just as you’re saying, the advanced directive is more of a statement of philosophy-

Kelly MacLean: Yeah.

Dr. Jessica Zitter: I’m this type of person who, you know, I would want you to keep me 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, I would not want you to keep me alive at all costs. And, by the way, what’s an acceptable quality of life is going to be different for everybody-

Kelly MacLean: Yeah.

Dr. Jessica Zitter: 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.

Kelly MacLean: Yeah.

Dr. Jessica Zitter: A DNR, or a POLST, those are actual doctors orders saying, “Do not do this particular thing.” That’s not a philosophy. That’s a directive about a specific type of intervention. And that is when, you know, the people who need to fill those out I think are people who … For whom they’ve really determined that they wouldn’t … It would never restore them back to a quality of life that they would find acceptable, and that’s a different kind of situation. If that makes sense. I hope that makes sense.

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

Dr. Jessica Zitter: Yeah.

Kelly MacLean: But we don’t all know this.

Dr. Jessica Zitter: Yeah, yeah, yeah, yeah. Well, and just to make you feel better, I write about this in my book, I had not filled out my advanced directive, and I was like, “If anybody should have a great advanced directive, it should be me.”

Kelly MacLean: Yeah.

Dr. Jessica Zitter: And I hadn’t filled it out for years, and I talk about the difficulty, and the struggle that I had with filling out my own advanced directive.

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

Dr. Jessica Zitter: It really is. It really is.

[00:30:00]

Kelly MacLean: Well, further to that point, is there something that you … I always ask our guests if you have one wish for your own end of life, what’s that wish?

Dr. Jessica Zitter: Mmm.

Kelly MacLean: It can be more than one, but …

Dr. Jessica Zitter: Well, I know that what I want as I’m passing through this world is … There 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 that are lots … Filled with good closure, and comfort, and love, and hopefully some kind of physical connection. You know, maybe they’re in the same town, and I get to spend time with them over the days, weeks before I die. That there’s people, you know, 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, you know, 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 … You know, I don’t want to be compromised in terms of my dignity. I don’t want to feel like I’m just a … 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, even if … Maybe I need, I mean, someone to change a diaper. I mean, I can live with that, as long as I’m still being looked at as a person, and I’m not … And for me, that means I need to be able to interact with people cognitively and emotionally. So, I just hope, you know, that I feel like my humanity is still intact as I’m dying. I hope I’m at home. There’s a lot of things that kind of go around just being a human being still until the very end.

Kelly MacLean: Thank you. And because of your role, and unique perspective on this, I also want to ask you, you know, for our society, if you had a wish for our … Collectively, for end of life, what that might be?

Dr. Jessica Zitter: Yes. I think the word … 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 at 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, which I just described for me, and talking about that, communicating that information back and forth, that takes courage, and whether … Or, whether you’re the physician, or the nurse, or the … You know, any health care provider caring for a patient, the courage to be honest, and to give prognostic information. 

It’s courage that’s required to grease the wheels of an honest approach, and an 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.

Kelly MacLean: Mm-hmm.

Dr. Jessica Zitter: I hope we can summon it.

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

Dr. Jessica Zitter: Well, it’s a good question, and I will say that some days are harder than others, and some days … The days that feel really good are the days where I can restore some trace of humanity to a patient, and I can give them some feeling of being humanized again, and even in the wall … Within the walls of the hospital, or within the walls of the ICU, make them feel like a person again. That is a good day. And the days which are really hard for me are the days where I can’t do that, because there’s 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 make … Raise real moral distress for me.

[00:35:00]

And so, I’m not going to lie, and say that, “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 end 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. 

Kelly MacLean: Thank you so much. It’s really … Your courage in the face of all of this is honestly inspiring-

Dr. Jessica Zitter: Thank you.

Kelly MacLean: 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.

Dr. Jessica Zitter: Yeah.

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

Dr. Jessica Zitter: Well, the place I would direct you first is to my book, which I put my heart and soul into, and really I think pulls it all together in a sort of a story format to show this conundrum, and this challenge, to us all from a whole variety of different angles, and perspectives. And sort of at the end of the book, I have a … What I think is a very robust appendix that really takes people through how to prepare for this, and how to get themselves through sort of a six step process to get into the next place that you want to be of real, you know, activation, and clarity. And so, I really would love to promote that to your readers. I think that’s my main lever for culture change. 

And the other thing I would, you know, recommend that people take a look at the movie, which is on Netflix, called Extremis, which you’ve alluded to several times, 24 minutes, and gives you a real insider’s view into what’s going on in the intensive care unit, and what is the end of life conveyer belt.

And I’m also really excited to be working on a variety of different … What I’m calling “multi media experience,” where we’ve kind of created an experience for a variety of different types of audiences, you know, different types of lay audiences, and certainly different types of medical trainee audiences, to use story to get people to really start to connect with this topic, and start to feel personally motivated to do something different. Whether … Again, whether you’re an anesthesia resident at UCSF, which is where we piloted it last month, and starting to sort of understand why it’s so important to think about this issue, and to start to draw on some new skills, and learn some new skills … Because 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. 

Kelly MacLean: [inaudible 00:38:02]

Dr. Jessica Zitter: Yeah.

Kelly MacLean: Thank you so much, and thanks for taking time out of your busy double life as a mom, doctor … Triple life, public figure-

Dr. Jessica Zitter: [laughs]

Kelly MacLean: To talk with us. We really appreciate it.

Dr. Jessica Zitter: Oh, it was such an honor to be with you. I really appreciate it. Thank you.

Kelly MacLean: Thank you.

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