Jessica Zitter: The Reality of What’s Valued in Medicine vs. How We Value Ourselves (#202)
Our Guest Today: Dr. Jessica Zitter
Dr. Jessica Nutik Zitter, MD, MPH, is a national advocate for transforming the way people die in America, and is the author of the newly released Extreme Measures: Finding a Better Path to the End of Life. She is a regular contributor to The New York Times and her writing has appeared in The Atlantic, Time Magazine, Journal of the American Medical Association, The Washington Post and many other publications.
Her work is featured in the Academy and Emmy-nominated short documentary “Extremis,” available on Netflix. She appeared on CBS Sunday Morning, NPR’s Fresh Air with Terry Gross, The Doctors.
She’s the third featured speaker we’ve interviewed from Dr. Robert Letter’s Palliative Care memorial lecture. The first was Dr. BJ Miller, and second was Dr. Vicki, Jackson.
Death not only isn’t a fun topic, but also a conversation we avoid with our family and friends.
“The Common Human Being Really Has No Idea What to Do When Death Starts Knocking. It’s a Tragedy. It’s a Dearth of Information. It’s a Serious Vacuum, and We Must Fill It.” Jessica Zitter
If this is the first time for you to learn more about death, Dr. Zitter is the perfect person to hold you hand through this body of knowledge. She’s one bubbly, happy woman. One hell of a doctor and teacher.
This conversation goes beyond palliative care as we dove into the pressure and resistance of choosing a path that isn’t quite typical for a doctor. Here’s what I mean by a different path – Jessica’s now a public figure, influencer AND a working doctor. We warmed up to this question: “How have you been judged by others in your field, and by the critics?” It’s not easy, and Dr. Zitter has a lot to teach us.
The common human being really has no idea what to do when death starts knocking. It’s a tragedy. It’s a dearth of information, it’s a serious vacuum, and we must fill it.
Oh my gosh, I’m a terrible doctor! What am I doing? But it was that complete release of humility that allowed me to then build up again.
I think we need to talk about the reality of what’s valued in medicine, how do we value ourselves and what we bring. I’m sharing my own struggles of palliative care, where I ask myself “Am I as relevant as I’m used to be when I was in the ICU?”
Indiscriminate use in everybody – the elderly, the aging, the metastatic cancer, the dying. We use machines to keep everyone alive, without a conversation, without any questioning, without discussion, information transfer. That is what led to this public health crisis of this mechanized, over-treated deaths.
We all assume that we get the right to live a full life. And one of the things I’ve learned from my work is that I’m no more entitled to live another day than anyone else.
- [07:00] Why do you think it is important for people to start talking about death and getting familiar with this topic?
- [08:00] How did you end up being a doctor? And then your past and current specialty?
- [13:00] You mentioned you had an epiphany while you were treating one of your patients in the ICU. Can you share it with us?
- [16:00] Is praying with patients something common?
- [22:00] What are some of the struggles in modern medicine? Why do you think we don’t have the conversations we need to have?
- [26:00] Why do we have this feeling, hope and need to live long? Why are we afraid of dying, did science agree on this?
[31:00] It was very interesting to see you in a real working environment, and your approach as a doctor in Extremist. You are not overly emotional, how do you manage to do that?
- [36:00] What was your colleague’s reaction to the documentary project? Did they want to participate right away?
- [39:00] How does it feel to be a creator? You are everywhere now on social media. Do you feel vulnerable? How do you deal with that?
- [41:00] How do you manage to keep motivated in other projects outside your role as a physician?
Jessica Zitter the Reality of What’s Valued in Medicine vs. How We Value Ourselves – Powered by Happy Scribe
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The common human being has really no idea what to do when death starts knocking. And it’s really a tragedy. It’s a dearth of information. It’s a serious vacuum, and we must fill it. Oh, my gosh, I’m terrible. I’m a terrible doctor. What am I doing? But it was that complete release of humility that allowed me to then start to build up again. I think we should be talking about these realities of the what is valued in medicine? How do we value ourselves and what we bring? And even here, I’m sort of showing my own struggles in this world of palliative care, where I sometimes wonder, like, am I as relevant as I used to be when I was in the ICU? Indiscriminate use in everybody the elderly, the aging, the metastatic, cancer, the dying. We use these machines to keep bodies alive every and all people without any conversation, without any questioning, without any discussion and information transfer. And that is what led us to this incredible public health crisis, a very, very bad, mechanized, overtreated deaths. We all assume that we get the right to live a full life. And one of the things I guess that I’ve learned from my work is that I’m no more entitled to live another day than anyone else.
Hi there. This is Fei Wu, and I’m your host for this podcast called Feisworld. We’ve been doing this for four and a half years now, and we just can’t get tired of it. Today on the show, I’m interviewing Dr. Jessica Zitter, who is a national advocate for transforming the way people die in America and is the author of the newly released extreme finding a Better Path to the End of Life. She’s a regular contributor to The New York Times, and her writing has appeared in the Atlantic, Time magazine, journal of the American Medical Association, the Washington Post, and many others. Her work is also featured in the Academy and Emmynominated sure documentary Extremists, available Netflix. She appeared on CBS Sunday Morning NPR’s Fresh Air with Terry Gross, the doctors on and on. She is the third presenter we’ve interviewed from Dr. Robert Leffert’s Palliative Care Memorial lecture right here in Boston, Massachusetts, inside Mass General Hospital at the end of each year. The first guest we have interviewed on Face World being the very charismatic Dr. BJ. Miller. And the second with incredible Dr. Vicky Jackson. All three conversations have transformed my life, and I call them my Palliative Care trilogy podcast series, which I’m super proud of.
But wait, who wants to listen to a conversation about better past to the end of life? If you’re simply enjoying your Friday, looking forward to the weekend, I get it. Death is never a popular subject and it’s never an urgent topic until it is. When yourself or someone you love face this traumatic transition, we avoid talking about death, even though death has always been part of our lives. If this is the first time for you to learn or even think about the path to the end of life, well, Dr. Zetter is a perfect person to hold your hand through this body of knowledge. She’s one bubbly, happy woman, one hell of a doctor and teacher. This conversation, however, goes beyond palliative care. As a woman in medicine, a media, I had to find out about the pressure and the resistance of her choosing such a path. That isn’t quite typical for a doctor. More doctors have chosen to share their knowledge these days in a more social and relatable way. At the end of the day, their knowledge isn’t just for the other doctors, but to benefit people, patients and families like us. Right. We then warmed up to this difficult question, which is how have you been judged by others since pursuing such a public path?
This is especially true for women who begin to share their voice point of view out in the open, the public can be so harsh, so why do it? Dr. Zitter has a lot to teach us. So I appreciate you for being here, choosing us on many other incredible sources of content and podcasts and stories that are free and endless. I do believe in faith, and I want to thank you for crossing Path with us. Without further ado, please welcome Dr. Jessica Zitter to the Phase World Podcast.
As you know, I’ve interviewed, I was counting the other day, like three palliative care doctors and one from China. I’m still thrilled because when I went back to China, I made it a point to say, hey, do you guys know any palliative care doctors? And I ended up meeting two doctors and we spent 4 hours together, having lunch, going to a bakery, drink, just sitting there talking. It made me so happy because it’s a practice, it’s an area that is so lacking in China. And I wish I knew so much more than I did. When my dad passed away, I was 26 and he suffered for two years from cancer and I wish I knew. And all of a sudden, I made it a point that out of Phase wrote podcast. People said, how are you capable? Are you even qualified to talk about this? I said, I just want to be a normal person asking maybe nonexpert questions. And I want people to be able to relate to my questions and hopefully the answers from my guess.
Well, I will tell you something that I believe that there is a great utility to that, because just about three weeks ago, it was on a Sunday, I was sitting in my house and I started to get a series of phone calls from friends and family. These are all educated, well connected people in the United States who had someone in their life dying and each one of these people had no idea what to do. And I was struck by the number of them in that particular period. But the fact is I get these calls all the time and the common human being in America and probably in China and in Mexico and in every other country has really no idea what to do when death starts knocking. And it’s really a tragedy. It’s a dearth of information. It’s a serious vacuum and we must fill it. So thank you for asking those questions.
I’m so glad and I can’t believe I mean if I’m meeting you for.
The first time and nobody told me.
A thing about you like this is Jessica, this is your cute dog I would guess that you are an offer for children’s books or something because you are so bubbly, you’re so happy.
Interesting. That’s a very interesting I think in some ways the fact is that I wasn’t really quite meant to do what I ended up doing professionally. I chose to be in the intensive care unit. In some ways I joke sometimes when I say it’s kind of a counterphobic move on my part because honestly that is not a culture that I find very comfortable. I kind of made my way into it. I’m like anybody else. I can kind of play a good game and I work hard and I don’t think anyone would necessarily know that I was sort of struck and uncomfortable in the culture. But it was the palliative care movement finding me in the early 2000s really at a time long before palliative care was any kind of a household world that allowed me to sort of find a new place and find a more comfortable place. And so I feel that I thank the palliative care movement for allowing me to kind of come into my own in my early fifty s to practice the type of medicine that I really want to be practicing.
Absolutely. You said 2000 is when 2003 is.
When I met the palliative care movement. It was a total serendipitous moment. I again was fully ensconced in the world of ICU medicine. I had been trained at one of the best programs the Brigham and Internal Medicine. And then I went to UCSF for pulmonary and critical care and was working at this inner city trauma hospital in Newark, New Jersey. And I just sort of had had all my kids and they were all very young. It was hard but I was working hard and I kind of loved being there in the action and so it was a moment where but as I was sort of expressed to you I was having this sort of moral distress that was very subtle, that was building inside of me. That was partly because my personality is different from sort of typical ICU and also because I was feeling this distress of really doing something that I could in retrospect, say I felt like I was kind of a widget on a conveyor belt. Like I was just kind of a technician doing things to people without having this sort of human connection with my patients. But I didn’t know any other way.
And so, by again, total chance and serendipity at this, one of my first jobs in this hospital in Newark, they had won one of these prestigious grants from the Robert Wood Johnson Foundation. Only four grants were won in this early two thousand s to enhance communication in the intensive care unit. But again, it was sort of a grant coming out of the palliative, the burgeoning early, early stage palliative care movement. And many, many people had applied for this grant. Many hospitals, about 454 one. And one of them was this hospital that I happened to be working at. It was a total coincidence and luck for me. But then the Kogan, the nurse who ran that team, it wasn’t even called palliative care, it’s called the Family Support Team really was not someone to suffer fools. And she called it like it is. She would come in and she would just say, what are you doing? What are you doing to this patient? Or have you told this patient about the problem? She would call things out that seemed so obvious, but that we hadn’t done. And at first I was resentful like, who is this woman?
Like, why is she coming in? I’ve trained at really good programs. I know there was a certain arrogance to my response, and I just kind of ignored her. And one day I had this moment which I described in the left lecture. It was an epiphany moment where she came in and she actually I was doing something to a patient who was dying, and she stood there in the doorway and she looked at me and she put her hand up like it was a pretend phone, and she said, call the police. They’re torturing a patient in the ICU. And it was just like this moment of profound humiliation, profound shame, but a breaking down of this sort of persona that I had built up around me, this shell to keep myself in this very tough environment that many of us have to put around us in order to function. I’ve had these moments in my career of profound selfreflection and oh my gosh, I’m terrible. I’m a terrible doctor. What am I doing? But it was that complete release of humility that allowed me to then start to build up again and go to her and ask her to help me and ask her to mentor me and ask her to teach me about this new approach to providing health care.
Yeah, that was a profound moment, not only for you, but for me. To hear you share that story, for you to actually be working in a serious situation than hear someone to say you’re doing something wrong or you should be doing something different. I’m thinking, my God, Jessica has like, 3 seconds. Is that to make a decision? And I believe at the time you were putting I forgot it was like.
A breathing tube or it was a catheter into her neck for dialysis, to dialyze her blood, to clean her blood.
Oh, wow. So what did you do from that moment? Did you call?
I flushed. I felt this tremendous amount of perspiration to get too graphic, but remember this, I had my medical students standing next to me. I was so embarrassed. I felt like I had been found out. Like I was just so stupid and so inhumane and so unethical. And I was doing this thing that was so wrong and that this medical student who I was kind of trying to show how to do this procedure, kind of could see through me. Like, I had this vision of everyone seeing through me. And I remember this profound sweat like flush of just perspiration, kind of like you can get like, if you get this profound anxiety moment in your body. And it was horrible because I didn’t, in those moments, have any other option that I could imagine besides continuing to put in the catheter, which ultimately is what I did. But the thoughts that were flashing through my head in that moment, like that microsecond, were, I desperately want to not do this line. I want to rip out all the sterile field and I want to let this woman be comfortable. Go back out to the waiting room, talk to this husband, really tell him what’s going on, that his wife is dying and that this is not going to do much besides hurt her and take him away from her for a few hours and possibly even kill her.
I mean, there are risks to these procedures, but all I could think of was, well, what would happen if I did that? Right? They’ve pushed this patient to the top of the list. Everyone’s waiting for us to get this catheter in. We’ve rearranged all sorts of stuff in the hospital so that this patient in an emergency could get this first run of dialysis. They bumped other people off the list. I mean, there are all these people who would be annoyed and frustrated. The medical student again, the sense that he was going to look at me like, what? What are you doing? The nurse who’s standing there with the tubing ready, you know, getting ready to connect, and the husband who’s sitting out in the waiting room thinking, oh, my gosh, this doctor’s really going to help me. And then all of a sudden, I come back and kind of flustered and say, well, actually, I mean, that just felt completely confusing to him, to me, everything. And most importantly, to me, what do I see as failure? I mean, what do I see as success. What does it mean to be a successful physician? To me, what it meant was to put in catheters, to clean blood if it needed to be cleaned.
I didn’t have another definition of being a good doctor. That included things like communication, goal, concordant care, which is another topic and metric that we think about now. Where is the patient getting care that’s consistent with her goals? I didn’t even know what this woman’s goals were. Humane, connection and sitting with someone in their grief. I mean, that wasn’t considered. In some ways, I would say that if I look back on those days, I probably saw that as a weakness as a doctor, similarly to the way I saw praying with patients. That was just not something I did. Now that’s all changed for me.
While praying with patients, doctors have to do that or are required.
No, doctors rarely do that. It’s very rare for doctors. I mean, some of our younger doctors will do it now. I’m really seeing a change in the workforce in terms of people being more willing to look at the nonscientific parts of doctoring, the humanity parts, the parts of sitting and listening and holding someone’s hand or crying with someone or praying with somebody. But in those days, that probably was considered a weakness, certainly in my mind. And I have a piece coming out, and it’s called being relevant. It’s a reflection about what is my worth as a doctor. Like, it was the same thing I’m describing to you about this moment with Pat where she accused me of torturing this patient and having this huge sort of crisis of self confidence and who am I? What kind of a doctor am I? Am I just a worthless doctor? Inhumane? I’m having in some ways, I have a similar crisis as a palliative care doctor. And that’s what this article is about. It’s saying, what is the relevance of being a palliative care doctor? You work within this team of people who are so competent. You’ve got a chaplain who delivers care, spiritual care that I don’t know, I’m not an expert in.
You got a social worker who is doing so many critically important things that are so crucial to a person’s wellbeing, that I didn’t even used to think about, but now I understand are critical variables to their quality of life. You know, more and more doctors are getting better at doing some of the pain and symptom management, so I’m not even sure I have such an edge on them. More and more doctors are getting good at communicating, so you don’t necessarily need to call in a specialist to communicate. So this article is sort of about, well, if I’m doing mostly palliative care these days, am I really offering that much? And some people will find that offensive for me to say, but I’m just being honest about the things I think about. Like, I go from being this ICU doctor where your word is sort of God, right? You’re the only one who can really make the final call on how to put putting this catheter in or using the ventilator. You have a specialized set of skills as a palliative care doctor. Yes. Communication skills are something that we are very good at because we do it a lot.
But a lot, you know, that isn’t you don’t require a degree in palliative care to communicate well, a lot of people can learn it. And there’s great communication skills courses that are being taught. Chaplains can be excellent communicators. Nurses can be excellent communicators. Other doctors who are not palliative care doctors can be excellent communicators. So what is my relevance if I’m practicing mostly palliative care? And again, I’m sure there are palliative care practitioners who would listen to that and say, well, and I’m waiting for a response to that article, but I think we should be talking about these realities of the what is valued in medicine, how do we value ourselves and what we bring? And even here, I’m sort of showing my own struggles in this world of palliative care where I sometimes wonder, like, am I as relevant as I used to be when I was in the ICU?
Today on phase world, I’m joined by palliative care doctor, speaker and educator, dr. Jessica zitter. She is a national advocate for transforming the way people die in America and is the author of the newly released Extremes finding a Better Path to the End of Life. Her work is also featured in the Academy and Emmy nominated short documentary Extremists, available on Netflix today.
I mean, that is really fascinating because I come from my background of being born and raised in China. There’s so much emphasis since we were like tiny little kids of only the subjects only matter for math, physics, chemistry, all these things. And then becoming a medical doctor is as good as it goes, is the most respective I receive. And in order to do that, you should be a surgeon. And within that realm, there are certain qualifications, how much money you make. Like you said, I found it really interesting when you said the non medical aspects of medicine so many, because I have personally gone through it much sooner and earlier than I was ready for to lose my dad. I remember my mom and I, on average, we’ll basically bring our sleeping bag and just stay with him. And it was just so much work. We would take turns so my mom and I could eat and take care of ourselves. But we saw doctors for maybe 5 seconds a day, if we’re lucky. Instead, what we were faced as soon as we got back from lunch, after 20 minutes taking turns, we’ll see this huge medical bills.
I remember one time seeing something for 60,000 RMB, which is equivalent to $10,000 US dollars. And especially if you don’t pay by 02:00 p.m. Today, you know, we’ll stop the medication and you know that feeling. And then I still remember after ten years, there’s a medicine called Tarsiva, which was at the time, ten years ago, was this thing, and it was free in the US. It was kind of this I found out later it was free in the US. And that medicine with a tiny little white tablet was, I remember, was $100 a day. And that was on top of everything else he was taking. And I remember after the fact, the doctor said, this may or likely may not help him, but if you don’t.
Pay for it, you’re going to regret.
It because it might give him another six months of his life. And I remember, it’s just I didn’t even have a word for palliative care. For me to hear you say this, and I’m thinking the world needs to know that what is beyond medicine, this is more, in my opinion, more important than what these medical equipment should do or could do.
Well, you’re preaching to the choir. I mean, I think there is a business of medicine. It’s alive and kicking in the United States. It is responsible for a lot of disincentives or misinformed and truly a lot of non beneficial suffering. Again, I’m not going to say it’s all due to financial incentivizing, but there are many other reasons why we over treat or we inappropriately treat people, or we treat with non beneficial treatments just to treat. There are reasons that aren’t just lying with doctors wanting to make money. My book is story after story of all of these other reasons that get in the way of good patient centered medical care. The fear of being wrong. So we just don’t tell you a prognosis. We don’t want to be wrong because there is always uncertainty, right, in prognostication. And so why prognosticate if you don’t have to just keep saying, we’ll do this and then we’ll do that, and then we’ll do this? You don’t have to get into this world of uncertainty. Who wants to be uncertain? Doctors don’t like to be uncertain. I’m just going to name a few of these things. The fear of conflict.
Nobody wants to get into conflict with another doctor. And you have a doctor over there, Doctor A, who wants to do this Tarsiva treatment of a patient for whatever the reasons might be. They may be that he’ll make money, or they may just be that he doesn’t want to have a serious conversation about dying with this patient. And then Doctor that’s Doctor A, doctor B wants to talk to this patient about what’s going on. But let me tell you that Doctor B, being Doctor B a lot of the time is very uncomfortable when Doctor A is going to get really pissed at you for having that conversation, and not only get pissed at you, but then go into the room and say to the patient, hey, you know that Doctor B? She doesn’t know what she’s talking about. She’s a doctor. Kabworthian, that’s another. There’s countless human psychological reasons why we don’t do the right thing. And by the way, that’s just the healthcare side of it. There’s the whole patient and family side of it. Too late. There’s data that shows that patients don’t like doctors who give them bad news and they like doctors who give them good news.
Even if that good news isn’t realistic. So everyone wants to be liked. If you are acting towards your doctor like only give me good news. I remember this. I talk about this a lot. In fact, I might have talked about it in the Leopard lecture. A patient who had actually I mean, this happens all the time in some way or another. But this was as graphic as it can get. They had taped a sign in this dying patient’s room saying no bad news. That’s not much of an incentive to go in and talk to people in an honest way, right? So I could go on and on and on. But there’s infrastructure reasons why not to do it. There’s financial incentives why we just keep treating there’s human psychological reasons why we avoid serious conversations and just keep treating. I mean, I could go on and on. This is what I wrote my book about.
I realized where does this fear of dying come from? Because I’m Chinese. And I know part of the Jewish culture, too. We’ve existed for our culture indicated 5000 years. And before then I’m totally into dinosaurs. So millions of years before us, we did not exist. There was no trace or record of us. But we didn’t fear the non existence. I realized the problem is all we ever know and educated about living and existing. And we were told that we’re the lucky ones. But you got 100 years. It’s a snapshot of history. It means nothing at all and it’s all over. There are millions and thousands of millions of years after us and we fear of not being here. And I realized, wait a minute, there’s some flaws to that logic and I can’t quite make sense. I want Jessica to help make sense of this whole thing.
It’s really complicated. And what I would say is this there’s certainly part of it that makes sense on an evolutionary perspective, right? Like this incredible desire, this drive to stay alive. I mean, it’s kind of what drives evolution, right? It’s really a profound incentive to stay alive is what really I think is a part of this. What I also think is that if you look back even into ancient human history, the time of the ancient Greeks, I talk about this ancient mythical of EOS and Teflonus. I don’t know if you’ve heard this, but EOS was the goddess of the dawn to Phonas was her human lover. And EOS went to Zeus and she said zeus, can you make Tithonus eternal. Give him eternal life. And she was shocked when Zeus said, okay. And as she was walking out of Zeus chamber, she said, oh, my gosh, I forgot to ask for eternal health. And what happened to Tithonus is exactly what you would expect. His body deteriorated. His mind became feeble, and yet he lived into eternity with EOS being his caretaker. And the fact that that myth exists and so many others as well, the fountain of youth, magic cures, the fact that those exist in our ancient history, I think, is a testimony or a testament to the fact that we have this fantasy of perpetual life that is ingrained in us as human beings.
And with the modern the advent of modern medicine, 100 years old, I mean, it really started in the 1930s with the creation of the iron lung machine and the fact that this thing was created in the late 1930s or in the early 1930s. They started to use it at Harvard in a couple of places, then Johns Hopkins, to try and do just desperately to keep these as. That next polio epidemic of the 1930s kind of came. They said, let’s try and keep people breathing, because we know that polio is a temporary paralyzing or weakening phenomenon that eventually can pass in many patients. Let’s try to keep these people alive as a bridge on these machines, as a bridge to health to them returning to their health. And what happened, it was a miracle. Tens, hundreds of thousands of people were saved who would have absolutely died from polio. And that was the beginnings, really. The then the 60s is all of a sudden, we had the machinery, the technologies, and the understanding, and then eventually a big army of doctors who specialize in all of these different subspecialties to keep bodies aloft. What was in concept about bridging them back to their health became this basically use of it in everybody completely.
I’m having a spacing out on the word, but indiscriminate use in everybody. The elderly, the aging, the metastatic, cancer, the dying. We use these machines to keep bodies alive in all, every, and all people without any conversation, without any questioning, without any discussion and information transfer. And that is what led us to this incredible public health crisis. A very, very bad, mechanized, over treated deaths.
It’s just really interesting to see different trends and what. I mean, it was difficult for me to watch the Netflix documentary extremists and what I thought the ability to actually see you in a working environment granted, or a camera and, like, just family members surrounding you. I’m sure it’s not as realistic as it is. I mean, there was a lot of stress on you. I couldn’t understand that. I just loved your approach as a doctor of not being overly emotional. It was just so real because you have to treat so many people. I knew it was such a real documentary. Because you’re not pretending to be somebody else. And it was so hard to do because I wasn’t even dealing with a dying for my documentary, was just trying to dress nice, even a sleeping poor, and then talk to somebody I really love to talk to. I just felt really self conscious, but there was not one bit of self consciousness that I could see.
The process was really incredibly stressful for so many reasons. I mean, the origin story of that movie is that I was writing my book and I saw another movie in 2015 while I was writing my book that was filmed in our hospital called The Waiting Room, which is a beautiful movie if you want to watch it. And I went it was shown for a big showing for the hospital staff. And after I saw it, I thought, oh, my gosh, we have to do a movie in our intensive care. And I was like, how do you do a movie in intensive care? But I went up to the director, who happens to be the husband of one of the speech therapists that I work with in the speech and language pathologist in the intensive care unit. And I said, Pete, I think you gotta come in and do this is your next film. Come in and do this. And he’s like, wow, that sounds interesting, but I’m doing this other film. He just did The Force about the Oakland police force, and he was just starting to work on another time. But I kept texting him.
I would text him, Pete, I just had this great conversation with his family. Oh, it would have been so instructive and so helpful for people to see that. And finally, after about a year of me text him, he got tired of me. He said, okay, you know what? I’m going to introduce you. And he introduced me to this other director who I had to convince for a while to come in. But he finally came in. He came in once and he thought, oh, this is too difficult. And he kind of left. And then about a month later, he said, okay, you know what? I’m going to do this film. So he came in and he did the film. And what happened was I thought that our whole intensive care unit would be behind it and would be and no one really wanted to participate in. And once we got this guy in there with a camera, all of a sudden everyone’s running away from the camera. And I’m like ah. And I was really essentially the only person who was willing, except for my friend Dr. Bargaba, who was also in it.
Why were people running away?
I think there’s many reasons. Some people are shy. Some people, we’re all shy. Most people weren’t obsessed about this topic. I mean, I was in the middle. I was writing articles and writing my book and a complete zealot about this topic. So not everybody’s a zealot about this topic. And frankly, here’s the other issue. This topic is kind of a taboo topic. This is not a topic that people want to talk about on camera, or at least in those days. This is a really tricky topic to talk about, and so people just didn’t want to really be part of it. And it was a very stressful experience because there’s also this sort of ethic, which I totally agree with and participate in, that you don’t do anything that compromises or makes your patients feel vulnerable, feel pressured. You know, our job is to protect these patients and not to pressure them and not to make them feel that they owe us something, which was very it’s a big part of our ethic as physicians, a big part of my ethic. And this was a real dilemma for me because I really feel like that’s true.
These are the most vulnerable patients at the most vulnerable times in their lives. At the same time, if you could find a small number of people who are willing to participate in a project that could help other people, even if it is making them more vulnerable, even if it might feel a little voyeuristic, which it did and was uncomfortable. Even if it makes people look at you and think, who do you think you are with? A film crew? Which I understand, because I probably would feel it like that way. It was a really uncomfortable experience for me. I’m glad we did it. I didn’t know how it was going to turn out. I didn’t know if he was going to catch me on film doing something wrong, having a patient die, because I did. Not that that’s happened. I’m just saying you don’t know. It’s a very vulnerable experience. So it was very stressful in a lot of ways to do that film.
And I’m not saying everybody’s life has meaning and it’s important, but to me, just by witnessing, I didn’t really count the total, it’s like four to five patients altogether that there’s something in addition to the meaning of their lives and their life meant something beyond what they thought was possible. And then for me, it was hard to witness that woman who said, why I’m 38, why is this happening to me? And I’m 35, thinking, oh, my God, that could be me. I mean, that’s daunting as it sounds like we’re not invincible. How did you convince these people to do it?
I actually tried to convince them not to do it. I mean, as a caveat to all the stuff that I just told you about how incredibly uncomfortable and in some ways paranoid I felt being a part of this, actually spearheading this project, I would go into rooms and say to people, it’s very unlikely that you would ever want to. Most people would never want to or agree to participate in something like this. And I’m only telling you about it because if you would like to, we’d be happy, but we don’t expect it from you. So the vast majority of people said no. I was really honestly discouraging of people participating. And so it was a very small fraction of the people we approached who actually participated in it. It’s hard. Today, for example, I was in the emergency room and seeing a patient who’s my age who has metastatic breast cancer, and she’s dying. And I think, oh, my gosh, there but for the grace of God, I’ll tell you that the truth is, as you said before, you made a comment like these billionaires who take all their pills and feel that they deserve to live longer, I think it’s really important to think about that.
We all assume that we get the right to live a full life. And one of the things I guess that I’ve learned from my work is that I’m no more entitled to live another day than anyone else. And I have patient after patient after patient who’s my age, who are dying, who haven’t finished, who haven’t finished their life’s work, who haven’t had that next grandchild or that first grandchild. And it’s very real. The work that I do brings me very close to my own death. I mean, I really feel like I think about my own death all the time. I’m sort of leaning into this world of actual, of dying and of being honest about dying, not because I like it, but because I feel like it’s a part of myself that I have to push open, that wants to stay closed. And I feel like as I push it open, there’s some part of me that is able to live more fully.
Today on phase world, I’m joined by palliative care doctor, speaker and educator, dr. Jessica zitter. She is a national advocate for transforming the way people die in America and is the author of the newly released extreme measures finding a better Path to the End of Life. Her work is also featured in the academy and Emmy nominated short documentary Extremists, available on Netflix today.
I want you to talk about you being a creator because you’re everywhere. You’re on Twitter, Facebook, now on Netflix. So you’re really out there. You almost become a target for a very sensitive subject, right?
You’re getting at some of the deep stuff right now. It’s funny. I can talk about deaths until the cows come home, but this is the stuff that’s actually the hardest for me. It is hard. It’s hard to put yourself out there as a woman. It’s hard to get negative feedback. It’s hard to have people implying that you’re in it for promoting yourself when you’re really in it because you’re trying to advocate for change of culture. There are a lot of people in this movement who are doing it for other reasons. It’s very uncomfortable to be thought of as doing this because I’m trying to promote myself. I’m trying to promote a message and in a way, that message is coming from me. So I guess you could call that promoting myself. But it is very easy for me to feel shut down and to feel ashamed and to feel embarrassed and to feel like I’m too uppity and to feel all the kinds of things that are said about women who open up their mouths and getting feedback is just tough. That can be very tough at the stuff. I haven’t even really talked about that deeply myself.
But there’s a certain fear that kind of comes with putting yourself out there about taboo subjects are not just about getting up and saying something. People, they call them the haters, I guess. But it’s tough.
Absolutely. Jessica, I’m so glad you’re bringing this up because when I brought the docuseries back to China and yes, it was a language baron, I really did not have the time to put the subtitles in, but I wanted to get general feedback among people who, you know, speak a little bit English. You know, it was very it was vulnerable. And this is again before talking about death or palliative care. And it’s so easy, like you said, to be a woman and feel vulnerable and feel like we don’t really deserve this. We really shouldn’t put anything out there. Who are we supposed to be? But you have to look at the majority of the people like why you don’t want to play for the critic and you don’t want to crave something to satisfying to make these people happy and like you. But how do you, Jessica, to look at the majority of the people and kind of convince yourself to say, I’m already working a thousand hours as a doctor and this is another project. I’m taking on Netflix movie or book and I have to do it. What does that voice sounds like to yourself?
It’s a really schizophrenic voice. You could call schizophrenic bipolar, multiple personalities. It’s this weird back and forth, overly sensitive to what’s going on outside. When I look at my husband, he couldn’t care less what people around him are thinking. He does what he wants to do. I know I’m not going to generalize for all females, but it is something many of us women really resonate with and this sort of sense of just being overly thin skinned and sensitized to what’s going on, like checking out the culture in the room and do I need to check out. I find that I’ll have days where I feel really excited and really great, and then I’ll have days where I feel like I’m scared. I’m scared that I’m going to get left out of the tribe. I’m scared that I’m going to get kicked out of the village. And I’m afraid. So I do things because I feel compelled to do them and because I feel like I’ve cultivated a certain bravery that I feel is important, but then I get scared. So it’s a really weird push me pull you kind of experience that I’m having it with this.
It’s been very eye opening and interesting, but I think we women need to stick together and support each other because it’s very easy to get ashamed and to get shamed and to feel like you shouldn’t have said that, or you shouldn’t have said this or something.
Yeah. When you say cultivated bravery, it’s something that, in a way that I feel like I can relate to, because I, too, was checking the culture in the room. And I remember just being in college, and at the time in the US. College, I had only been really speaking English on a regular basis for a year. And it’s one thing to have a cup of coffee and chat with friends, it’s the other to sit in an American college English class and trying to voice my opinion. I don’t even know how the word is going to come out. I don’t even know whether I could be logical or did I just miss something professor said? And I can read nearly as quickly as everybody else. And so I remember just keeping quiet. It’s like there’s something bursting inside that you can’t even let out. And I have to say that when I went back home, this time in Beijing, my mom collected just piles of little novels. And they’re really silly novels I wrote since the age of like, eight or nine, all the way through 15.
They’re still terrible.
But I realized I reengaged and I saw who I was, who I am really deep down. And I think I can see the young Jessica of someone who always wrote and always had an opinion, even way before medicine was even a thing. And I think you need to let that character, let that come out and really do great things. There are also an opportunity for certain people to not really do good in the world with that talent, with that gift. But I think, you know, especially as women, there’s such an imbalance between opinions and then just the way that kind of we talk about ourselves and what it’s really like to be lubricating.
Staying safe by staying small.
Hi there, it’s me again. I want to thank you very much for listening to this episode, and I hope you were able to learn a few things. If you enjoyed what you heard, it would be hugely helpful if you could subscribe to the Phase Royal Podcast. It literally takes seconds. If you are on your mobile phone, just search for Phase Role podcast in the Podcast app on iPhone or an Android app such as Podcast Addict and click subscribe. All new episodes will be delivered to you automatically. Thanks so much for your support.
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