Jessica Fein: Welcome. I'm Jessica Fein, and this is the “I Don't know How You Do It” podcast, where we talk to people whose lives seem unimaginable from the outside and dive into how they're able to do things that look undoable. I'm so glad you're joining me on this journey, and I hope you enjoy the conversation. 

Welcome back to the show. Before we get into today's episode, I want to take a moment to thank every one of you who's reached out to tell me how much my memoir, Breath Taking, has meant to you. 

This past weekend, I was in L.A. for the Grieftastic Book Fair. Yes, you heard that right. Which brought together 35 authors of memoirs and guidebooks and other stories about grief. And it was, in a [00:01:00] word, magic. These are people who are writing and thinking and talking about topics that, as a culture, we are most comfortable completely avoiding.

Another thing I did in L. A. was attend the EndWell Conference, which brought together some of the world's most engaged thinkers and doers in the fields of medicine, design, spirituality, caregiving, and health. and activism to talk about end of life and how living well and ending well are intertwined. 

Dr. Shoshana Ungerleider is the force behind EndWell. She's a physician, science journalist, and public health advocate, and she is leading a national movement to reshape how we approach life's final chapter. Alongside her medical work, she hosts and produces Ted Health and the “Before We Go” podcast. She has executive produced Oscar nominated films and she frequently appears as a medical expert on national news networks.[00:02:00] 

In a world that runs from difficult conversations, Shoshana is running towards them with compassion, creativity, and what she calls, radical bravery. She is bringing wonder, hope, and even joy to conversations about life's most challenging transitions. It is my honor to bring you Dr. Shoshana Ungerleider.

Welcome to the show, Shoshana. I have just come back from EndWell. I'm still decompressing, and I'm so excited to have this conversation with you. 

Shoshana Ungerleider: Thank you so much for having me. It's an honor.

Jessica Fein: I'm also really grateful that you made time for this conversation because you, to put it mildly, are an incredibly busy person.

You are a doctor, a film producer, a journalist, and many, many other things. And what's interesting is all of these roles you play are related with a huge focus on end of life [00:03:00] care. How did you become passionate about that topic? 

Shoshana Ungerleider: Well, I'm trying to think of how far back I should go. I don't know. It was really early on in my residency training where I was learning how to be a doctor and taking care of really sick people in the intensive care unit and realized that we do some, like, pretty incredibly invasive things to keep people alive and it often, you know, isn't what they want and they don't understand and, you know, There's this mismatch very often of expectations around when someone becomes critically ill and we care for them in the hospital around what the future might hold, because we don't do the best job in medicine of communicating about prognosis, about the short term and long term potential implications of the interventions that we do, because by default, In the United States and in much of the Western world, you'll receive very aggressive invasive treatment if you show up to a hospital, [00:04:00] right, unless you opt out of that and and have someone advocating on your behalf or you're able to speak for yourself and say, you know what, I don't want to be in the ICU or I don't want more chemotherapy or whatever the case may be.

And sometimes it's complicated and people don't know what they want. But again, like in medicine, we, you know, I was witnessing us as the care providers, not doing a good job of having those conversations early in the disease trajectory, and it was landing so many often older, more frail adults in the ICU, spending their final days and weeks and moments of life hooked up to tubes and machines and hidden away from the people that they loved and certainly surrounded by people like me and in scrubs and white coats and I was realizing that it wasn't necessarily what they wanted and I just started thinking about, you know, how can we do a better job in medicine of having these conversations, learning how to have these conversations and communicate better with patients.

[00:05:00] normalizing those kinds of discussions and certainly in society, making end of life a less taboo topic. And so by the time I finished residency, I'd had amazing mentorship from the, the palliative care providers at my hospital, who I am forever grateful for and started thinking about this much bigger conversation about what I could do personally to not only change medical education.

But also do my part to shift the cultural narrative around death and dying. So I don't know, I guess that's how it started. 

Jessica Fein: I love that you saw this issue and your response was, how can I make a difference, move the needle? And it's interesting to me that you talk about how death is a taboo subject. And from where I'm sitting, I see that as a prelude to grief, which is also a taboo subject, right?

It's like, we don't want to talk about it ahead of time. We don't want to talk about it when it's happening, and we don't want to talk about it once it's behind us [00:06:00] either. 

Shoshana Ungerleider: Oh, absolutely. I couldn't agree more. Yeah. Thank you.

Jessica Fein: So, out of this, the EndWell Foundation is born. 

Shoshana Ungerleider: Yeah, well, when I finished residency now, 11 years ago, can't believe that, I was super burned out.

Like so many of us that have, you know, gone through medical training, it's intense and it takes a lot out of you. And I thought about doing palliative care fellowships. But I realized that I was much more interested in the broader conversation as opposed to the day to day clinical care and started going to conferences around the country to learn more about what was happening nationally in the world of policy and then on the ground with hospice and palliative care.

And I learned a ton and met some incredible people who've been working in this space for 10, 20, 30, even 40 years to, like, really move the needle. But I realized that one thing that kept coming up was that everyone agreed that we needed, like, a cultural shift, right, in society to be, you know, talking about this stuff in a new and [00:07:00] different way.

In a more open way, but it was all of us kind of talking to each other over and over about the same thing. And I was like, if we're trying to make a big difference here, we need new people. We need to branch out of our traditional healthcare silos and broaden this conversation. And so I started thinking about what that could look like.

And back in around 2016 or so got this idea of having a conference that was Truly interdisciplinary where we were really intentionally inviting folks from different professional backgrounds and all walks of life to be talking about how we can make end of life, part of life and coming up with new solutions for everybody involved.

And so I invited people from the worlds of design and tech. Because the first conference was in San Francisco and funders and entrepreneurs and artists and educators and some well known folks who hadn't ever talked about this subject before. So I kind of got on the phone and called a bunch of my friends and colleagues and said, Hey, I want to do this convening different than [00:08:00] anyone else has ever done before.

At least I thought. Would you come and speak? And to my surprise, like all of them said, yes, not a single person said no. And we asked them to give these Ted style talks on stage, also a different format than you would traditionally find at an academic conference, of course. And the winter of 2017, we had our first conference.

And we honestly, Weren't sure if anyone would show up, but we sold out three months in advance and had like hundreds of people on this waiting list to come to this conference about death and dying. And it was pretty magical to see the energy in the room and the excitement of all these people who really cared about the subject and were so engaged in this conversation.

It was one of those things where, you know, when you're at a conference and usually the morning and the afternoon sessions are well attended, but by 5 PM, everyone's gone. 

Jessica Fein: Everyone's down at the hotel bar, right? 

Shoshana Ungerleider: Exactly. So at 5:30, we're wrapping up this conference and I'm on stage and the room is still packed.

And I was like, [00:09:00] Whoa, there is something here. We've figured something out. And we started putting all that content online and in sort of short videos for social media, they quickly started going viral, like organically back when that was a thing. And so we've continued to kind of build out this community and create resources online and of course, in person and virtual convenings. And we've grown to be, you know, part of a bigger movement that really is hopefully encouraging folks to think differently about end of life and grief and, and caregiving and the experiences where we can hopefully avoid needless suffering for people, given that we all will go through this.

Many times in our lives, right? So the more that we can talk about it, hopefully, the better. 

Jessica Fein: When we think about people preparing their own wishes or thinking through kind of how they would like their trajectory to go, it seems to me like that's one [00:10:00] thing, but the family of that person is such a huge part as well.

And what I mean by that is I think back to my mom and when she decided, my mom died from breast cancer. When she decided to stop care, she was so petrified to tell me and to tell my sister. She thought we would fight her on it, you know, and she wanted to speak to the doctors in private. So it seems to me that it must so often be a family issue, not an individual's issue.

And what happens when there's a major disconnect? 

Shoshana Ungerleider: Yes, so many, many people do have, you know, family members or chosen family, you know, loved ones that kind of wrap around them in the context of serious illness. I mean, it's so important, right, for everybody to be talking openly and honestly about their wishes and really, you know, You know, hopefully the care team is engaging all of those people in ways that are really productive and helpful.

And it is common, right, for people to have [00:11:00] different wishes for their loved ones. I know my dad was ill in the last few years, and there were certainly times when I said, dad, really, let's look at this opportunity for treatment. And we sort of would be forced to do that. To have these kinds of conversations, it's, it's really hard.

I mean, I'm not going to sugar coat it, right. It's so hard to see a loved one ill, and it's really hard to see them make decisions that maybe you wouldn't make for yourself. But I think that the ultimate acts of love are recognizing that it's about their experience and what they ultimately want. 

Jessica Fein: So important to have that conversation when the person can still think clearly about it.

And I applaud and agree with the critical role that the doctors can play in it, because I think back to some decisions we had to make regarding my sister, actually, and I needed the doctors to speak so plainly with me as the person who was responsible for making the decisions. And it took a while, like [00:12:00] the doctors didn't want to quite say what they ultimately ended up saying and I needed to hear, right?

And so it is a thing about every player in this complex ecosystem needs to have the education. And you mentioned earlier that it's really a taboo here in the United States and in, you know, kind of Western culture. And I'm wondering, are there cultures that get it right that do a better job than we do?

Shoshana Ungerleider: Well, I do want to say one thing about what, what you were saying about the family dynamics first. And that is that in palliative care, it's a team based approach to taking care of folks. And that means that there's a doctor, but there's also a nurse, a social worker, a case manager, a chaplain, sometimes a pharmacist.

There's a lot of people that really help guide those conversations. And I have to give a shout out to social workers. Thank you. Who are incredible and, you know, really are trained and skilled often in family dynamics and really navigating these kinds of conversations. So it goes [00:13:00] well beyond the doctors.

And I will just say most of us weren't trained in how to have those kinds of conversations and aren't the best at it. Some are, but I just want to point out that it's, it goes well beyond the physicians who are really helping families through this. And I think that's just so critical and we really need to be educating more doctors in how to artfully have these discussions, especially when it's a challenging situation.

Jessica Fein: Yeah, and I appreciate that. And before we get to the culture question, I will add there, part of the issue that I've experienced is that palliative care gets a bum rap. In my book, I have a whole chapter on how much I resisted even meeting the palliative care doctor who ended up being the person I trusted more than anybody else.

But it took years for me to agree to meet with her. And I think it's because we, many of us, who are not in the field have this idea that palliative care means my family member is like on death's doorstep, right? And people can say to you over and over, no, [00:14:00] that's not necessarily what it is. And we're talking about, you know, something else here, but I think that you're right.

Palliative care, the whole team can make the most significant difference. And one of my regrets is not engaging with palliative care earlier on. Can you share with people what palliative care is and what they do bring to the table in addition to that team approach? 

Shoshana Ungerleider: Yeah, so palliative care is a specialty of medicine that focuses on quality of life for anyone facing a serious or life limiting illness.

And focuses not only on symptom management, whether it's pain or other issues coming up in the context of illness, but also psychosocial support, which is the emotional stuff, the existential questions that a lot of people face, and also financial issues that come around. And again, because it really is a team that wraps around patients, their families and loved ones. It's a wonderful support system that can be used any [00:15:00] time during the course of illness. Ideally, palliative care is actually enlisted at the time of a serious illness diagnosis, and that can be years and years upstream from the end of life. People often conflate hospice with palliative care.

They are not the same thing. Hospice is a type of palliative care, but that's for people who are, you know, they Within the last six months of their life and really focuses on comfort and quality of life when people forgo curative treatment. So we switched the care focus to really comfort for however long someone has.

And then I will also say that, you know, it's not just patients and the public that get palliative care wrong. It's also clinicians. There's still many, many doctors and nurses that don't understand what palliative care is and the value that it can bring, but there's lots and lots of data now that shows that the earlier that families and patients enlist the help of palliative care, patients, number one, live longer.

Interestingly, they certainly have better [00:16:00] quality of life and everyone is more satisfied with the care that's provided. So, it's a real win win for everybody. 

Jessica Fein: Thank you for that, because I know that some of the people who are listening have the same kind of misconception, and I think it is such an important thing so that if you ever are in the situation to have palliative care presented, you know what it is and what a difference it can make.

So, I appreciate that. 

Shoshana Ungerleider: I should just say in like every hospital in this country, basically nearly every. And if your doctor doesn't offer it to you, you can ask for it. And that's really important also because you have to be referred typically to palliative care. And so it's a conversation to bring up with your clinician if they haven't readily offered it to you.

Jessica Fein: Yes. Thank you for sharing that. Okay. So what cultures are getting it right? 

Shoshana Ungerleider: Well, I, I guess I would say I don't know, I think that at least from my understanding in the Western world, we all have this [00:17:00] issue around kind of running away from conversations around death and dying. I am not a healthcare economist, but what I will say is that countries that have a more Kind of nationalized health care system.

Think about spending on health care in a different way than we do in the US. We're very much focused on the individual in a fee for service insurance model. Typically here, whereas in places like the UK, for example, in Australia, where much of the health care is provided through the government. they think differently about, you know, are we going to put grandma who's 95 with metastatic cancer in the ICU versus, you know, encouraging hospice care earlier.

So there is a slightly different philosophy, but I will say from my understanding anecdotally from talking to colleagues and such that it is a challenge everywhere. And these topics are universally taboo. So I'm not sure that anyone is, you know, getting this what I would consider right at this point.

Although I think that the [00:18:00] conversations as palliative care is becoming much more commonplace and widely accessible for people, the conversation is shifting slowly.

Jessica Fein: At EndWell and much of the work that you're doing, you're focusing on making the end of life more dignified, more human centered, so that ending well. Becomes a measure of living well. 

Shoshana Ungerleider: Yeah. 

Jessica Fein: In what way does living well inform how we end? 

Shoshana Ungerleider: That's a great question. I think that from my perspective, death can be a teacher for all of us.

I think reflecting on the fact that one day life will end for everything that's alive can allow us to live better every day. And sort of encourage more reflection on our day to day lives. Like, am I living with meaning and purpose in my life? Those are big questions and different answers for everybody, of course.

But I often feel [00:19:00] like if we can engage in a conversation with ourselves, About our own mortality. It can really inform our daily decisions and can be a really beautiful process. It's not always easy. It is often hard, but I think that if we can create that relationship throughout our lives again, it can not only help us to live the best life.

But then also ultimately allow us to hopefully get care in and around the end of our lives, whenever that comes, that's in line with our goals and our values and really honors the life that we've lived. 

Jessica Fein: Is that what it means to end well then to be able to have the care that honors our hopes and the way that we've lived?

Or is it something else? 

Shoshana Ungerleider: I mean, I think so. I don't know. What do you think? 

Jessica Fein: Oh, God, I mean, yes, I think so. And I think that's so hard to achieve, having been with people closest to me. of all different ages. I mean, [00:20:00] actually, it's interesting, you know, we think about the sandwich, meaning for anybody who doesn't know our children and our parents, but I've also had my siblings, right?

So I've had like a, I don't even know what we call that, like a BLT or something, but I don't eat bacon. I don't know, but some kind of like very complex sandwich situation. And I think that the decisions around ending well, for me have been really different when I've been looking at my parents versus looking at siblings and then again versus looking at child because the factors are so different when you think about a life not only well lived but long lived as we do often with our parents.

Jessica Fein: So it's a tough one. It is. Now, one of the things that I love about EndWell is that you're focused on infusing wonder, hope, and joy into conversations about really tough things like grief, loss, and caregiving. And as I thought about it, I could really see how wonder [00:21:00] and hope would play into those tough conversations.

But I have to say, joy puzzled me a little bit, and I'm a big believer in joy. Like, that's part of my whole thing is joy and how joy and grief can coexist. But how do you bring joy to these tough, tough topics and tough conversations? 

Shoshana Ungerleider: Yeah. Well, I think just like everything in life, there's a yin and yang, right?

We're not saying that these conversations are joyful all the time or that you have to like force, you know, joy and happiness into something that is yes, universally really, really hard. And it may be that not everybody can. Find joy, especially in whatever moment that they're in, in these experiences. But I think that what we do with EndWell is kind of curate conversations and discussions from people who are really thinking differently or have had their own experiences where there's been humor and other things that bring kind of levity to.

These discussions last year [00:22:00] at the conference had JJ Duncan, and of course, she's a reality TV producer who lost her son around age 10 to cancer. And she told this incredibly sad story on stage, but was at the same time like hilarious. And so you're just crying these, these happy and sad tears. And I think that can be really healing and beautiful.

And we do our best to think about the range of. Emotions and experiences that one can have in the context of these conversations and try to leave people with this hope or inspiration that that's possible and that connecting with all of it can be really healing and just really part of the human journey.

Jessica Fein: And for anybody who doesn't know, JJ Duncan was the force behind the program, “The Art of Swedish Death Cleaning,” which if you haven't seen it, you should check it out. And I love when we talk about the complexity and the yin and the yang because I think for many people, it's not until you're on the other side of [00:23:00] it that you understand profoundly how all of these things that seem like they would be mutually exclusive can coexist.

I also love the idea of radical bravery. Which you talk about in your curious and creative approach to finding better solutions. Can you give us an example of what a radically brave solution might look like? 

Shoshana Ungerleider: Yeah. It's one of our core values at EndWell. So, you know, myself and, and our executive director, Tracy Wheeler, who've been working together since the very early days of the organization came up with that.

And that idea like came to both of us and we were like, yes, this is who we are. One way that that really fits into what we do is that, you know, I'm a physician, that's sort of my training and my calling in life. And I am constantly very critical of our healthcare system in constructive ways. And one might think like, why is she doing that?

Like she should be supportive of her colleagues in the system that she works in. [00:24:00] And I think there's so many ways that we fail our patients. And so I'm. Constantly trying to encourage a shift. And I actually think the biggest shift in healthcare is going to come from consumer demand. Not so much of medicine, figuring itself out because there's too many factors at play there for the status quo to change, um, from the inside.

But yeah, I mean, there there's people like Katrina Spade, who, uh, is a designer by training, lives up in the Northwest and decided that her focus was going to be a better solution around burial practices. And so she founded Recompose, which is for human composting. So body disposition, where you can return organic matter, our bodies, back to the earth in this incredibly beautifully designed way.

And, you know, she came up against laws that are against that. So she said, I'm going to actually have a policy arm of the work that I do and lobby You know, the governor of [00:25:00] Washington to be able to make this legal in my state, and I'm going to build the solution. And she has done all of that. I mean, for somebody to be one person and come up with this as an entrepreneur and designer on your own, and then say to the government, Here I am, here's why this is important and I'm going to make it so.

I mean, that is the most like badass thing ever. So we have countless examples of people who are just pushing the envelope on what's possible and really just showing up in the most incredible way in the world. And I'm just continually inspired by these folks. 

Jessica Fein: Tell us about your latest project, “Before We Go.”

Shoshana Ungerleider: Yeah, so um, “Before We Go” is my new narrative podcast series that I have created with Podcast Nation. And we're about halfway through the eight episode season now, and this is really me telling my own story for the first time in this particular way. As I mentioned earlier, my dad [00:26:00] got sick in 2022. He was diagnosed with stage four pancreatic cancer.

Which was quite a shock to all of us because he was a super healthy 72 year old out swimming every day for an hour, traveling the world, working full time, producing films, being a sports psychologist. And so when he called to tell me that there was a mass in his pancreas, which is what my grandmother had died of, I immediately as a doctor was like, Oh no, like pancreatic cancer is, is the worst.

It's what all of us, we don't want that. It tends to be caught very late stage and, and people don't live very long typically. And so through that experience of becoming one of his caregivers, you know, learned that his cancer was genetically linked, meaning there was an inherited genetic mutation in our family, which is why my, my grandmother who had died of the same thing, passed it to my father who passed it to my sister and I, and this is a BRCA mutation named for [00:27:00] breast cancer.

Most people don't know and I didn't know that BRCA is associated with pancreatic cancer in addition to breast and ovarian as well as melanoma and aggressive prostate cancers and had my dad not gotten sick, we wouldn't have probably known to get tested. And so this is the journey that we went through of Obviously facing my dad's mortality, but also my own and my decision to undergo risk reducing surgeries as my father was dying.

And I just, I learned so much in the process of being a daughter to my father and as he was sick. And despite the fact that I'm somewhat of an expert in certainly in medicine and an end of life, there were so many shocking things that came up where I talk about this stuff all the time, like how to be a good healthcare advocate, how to navigate the system, how to provide support to a dying loved one.

And it was just so hard at every step. Despite the best circumstances that we had and resources at [00:28:00] our disposal, that I really felt the need to like shed light on my journey to say like, yikes, you know, this is really hard. And here's what I learned along the way. And despite all the best intentions, it was still really, really hard to provide my own father with a good end of life experience.

And as we mentioned earlier, there's so many moments along the way where I would have made different decisions than he did, or. Hindsight, of course, is 20 20, and I so wish that he would have opted for medical aid in dying, or used psychedelic assisted therapy for existential distress at end of life, or even had a death doula at his bedside as he was dying.

Things that we talked about and I know all about, I could call a hundred death doulas and make it so, and we just didn't. Do it. I know I'm making it sound like this is like this heavy, dark, sad podcast. It actually is really funny at times and beautiful and very human. And we've just gotten the most wonderful feedback so far from people.

It [00:29:00] was number one on the documentary charts for podcasts in its debut week, which I'm totally blown away by. I just hope that by telling my story that it helps other people who are navigating a similar journey, feel less alone. 

Jessica Fein: First of all, talk about radical bravery. Sharing your story in that way is pretty badass in and of itself.

And also being able to say, look, I'm in it. I talk to people about these things every day, and this is really, really hard. And how valuable for listeners, because that's all we want, right, is for people to say, Yeah, this is really, really hard. 

Shoshana Ungerleider: Yeah, yeah. And I, you know, I was so lucky that a number of experts came on the show to talk about everything from healthcare economics to hospice nursing to medicine to menopause.

We go, we have a whole episode on menopause. Bet you didn't think we'd go there. 

Jessica Fein: Yeah, well talk about transitions, right? Right, exactly. Another big life transition. Yep. Can you tell, for some of our listeners who might not be familiar with a death [00:30:00] doula, can you tell people what a death doula does? 

Shoshana Ungerleider: Oh, yeah.

Well, my understanding, and not being one, of course, is that a death doula provides non medical support services to dying people and their loved ones, similar to how a birth doula, which I know many more people are familiar with, walks along the journey with it. Moms and baby and families, it's a similar process and so often death doulas can be involved obviously as someone is getting ready for the dying process during active dying to best support the person and their family and then thinking about whatever issues come up, whether it's legacy or just answering questions about what's normal and natural in the context of dying.

And then through the grief journey, really being there to walk beside families and loved ones after their person is gone. I find every death doula I've met is an absolute earth angel. These are incredibly heart centered [00:31:00] people who are really driven by helping people through this transition. I would love to see more of us in healthcare, kind of embrace death doulas, encourage it.

I'd like to see the death doula space continue to grow. Grow as it is. I mean, it's, it's even in the last five years, I've talked to so many people who are like, Oh, I'm becoming a death doula. I was a nurse or I was a lawyer. And now I want to do this. It's, it's incredible. There is no. national or international accrediting body.

So it's a little different than how we think about lawyers or doctors or nursing, where it's, you know, people take a test and then they're certified. There's a number of certification programs, but there isn't one accrediting entity. It's a field that I think is so, so important and so wonderful. And we have some amazing death doulas on our stage this year at EndWell.

So I'm grateful for that. 

Jessica Fein: I'm just so struck by how what you're doing combines the practice of medicine with storytelling in all of these different formats. [00:32:00] Because you mentioned that you have people in this TED style on the EndWell stage and on your site sharing stories. You're sharing your own story in this podcast.

And you also have been very involved with films that dive into these topics. How do you see storytelling convincing people to think about these things in a different way? Then, you know, sitting down with the practitioner when the time comes or in a more antiseptic kind of environment. 

Shoshana Ungerleider: Yeah. Well, I feel like stories and the emotional journey that really brings people in and engages you is what shapes culture.

And then what we're trying to do is shift the culture right about this conversation. And so I got involved with two documentary films right EndWell was starting because, again, this idea that, you know, most of us, unless we've worked in medicine or been with loved ones in and around the end of life, like aren't aware of kind of [00:33:00] what goes on in an ICU when someone's ill, or haven't ever encountered palliative care.

And when we can shed light in some of those hidden places through narrative storytelling. We have the opportunity to reach many more people. And when a, you know, network like Netflix buys your film and, you know, and gets it out to tens and hundreds of millions of people around the world, that makes a difference.

Extremis was the first documentary and then Endgame was the second one. And we got super lucky that they were both bought by Netflix and both nominated for Academy Awards. And it just showed me the power of storytelling and that there is an appetite for conversations like this. And so film and storytelling was never anything I was trained in or knew much about until I kind of encountered it, but really realized through my own experiences that, that we have a unique opportunity to kind of do this differently.

And reach people of all ages in new and different ways. And we've actually done some interesting research into [00:34:00] Hollywood in terms of how primetime television, for example, and how their portrayal of end of life on TV impacts people of all ages throughout their life to have an understanding about what happens, you know, when someone's heart stops or, you know, the kinds of conversations that happen in hospitals around palliative care and such.

And so. It's been really interesting to kind of like dive more deeply into that over the last couple of years. And I hope that we're making a difference in terms of encouraging people to think about this stuff early and often and, and have a more accurate understanding, a nuanced understanding of what the important issues are.

Jessica Fein: It's just so much easier to engage in something that is told in a, you know, story format. You know, sitting on our living room couch watching Netflix is not as scary as being in the family room in the ICU. So it is such a beautiful way to get people more aware and comfortable with these issues. 

Shoshana Ungerleider: And arm people with hopefully some knowledge and, and really feel empowered to be asking questions and [00:35:00] be a healthcare advocate for yourself and your loved ones as hard as that is.

I wish it didn't have to be this way, but you know, a lot of, of what we're aiming to do and certainly with the films and encouraging more nuanced storytelling on television is so that in the moments when it really matters, people are educated. About what to ask about and maybe how to frame these conversations for their own loved ones.

Jessica Fein: And it is interesting because so often when we're going through these things, it can feel so isolating, particularly if our peers haven't been engaged in it yet, because we all will be. And when you are watching it on a show or a movie, it can make you feel less alone. 

Shoshana Ungerleider: Yeah. 

Jessica Fein: I mean, I just finished “This Is Us," which I know I'm like years late to the game, but so much of what they talk about it, you know, if any of my friends are listening to this, they're rolling their eyes now because I've been really very obsessed with this show.

But I just felt like the way they dealt with death, dying and [00:36:00] grief throughout all of the episodes was so well done and so accessible. And I think Again, can really serve to make people feel like, okay, this is something that we can talk about. We can deal with because here you see this, you know, perfect family going through it.

Shoshana Ungerleider: That's one show that really has gotten it right. We've given them a lot of praise over these years and that that team just did such a beautiful job of showing the trajectory around. Well, maybe I, should I not give a spoiler here around what happened? It's okay, because I think 

Jessica Fein: we're so late, but also I'm so glad you said that because I, again, like I've been like weirdly obsessed with this show recently.

So that's very validating to know that as an expert, you think they got it right. 

Shoshana Ungerleider: Oh, yes, they absolutely did. Yes, around the dementia and the advanced care planning around it and just the family rallying around the main character, the matriarch, Rebecca. So beautiful. They really did. They thought a lot about, you know, how to frame that and they nailed it.

Jessica Fein: They nailed it as they did many other huge social [00:37:00] issues. So hats off to everybody involved in that show. All right, so I need to ask the question that is on the table here. You are doing so many different things, as we talked about at the beginning, changing the way people think about the most unspoken about part of life, in addition to all of the day to day things that you're doing.

And this is really tough stuff, and you're enmeshed in it all the time and balancing so much. So tell us. How do you do it? 

Shoshana Ungerleider: Oh, man. Well, I, if you'd asked my husband, he'd be like, well, because you're a Type A obsessive like psycho and you work all the time, I do work a lot, but I really also enjoy my work.

And it's something that infuses my life with a lot of, of joy, despite the subject matter often being hard. So I feel really lucky that I've found, I think at least for this stage of my life, my calling. I think that's so important. I also, you know, I almost hesitate to mention this, but I also don't have children.

And so I've been able [00:38:00] to spend my thirties and into my forties now really focused on work when I realized that's not possible for other people. So I do have a few more hours in the day, maybe then than moms and dads do. And I think for me, just being able to stay super grounded, I exercise a lot, which might sound weird to mention, but I feel like for me, it's almost like meditative and a way for me to kind of work out whatever is coming up for me.

I know when my dad was, was really sick, getting a run in every day and listening to music. It allowed me to kind of like tap into how I was feeling in this very kind of. visceral kind of kinesthetic way. I'm very grateful that I'm able to do that. I thank my body for being able to do that for my mind and my soul every day.

And my husband is just incredibly supportive. He did all the music for my podcast and every day is like the biggest cheerleader for all of this work. And so I wouldn't be able to do any of it without his support. [00:39:00] 

Jessica Fein: For people who are listening and who are like, okay, so I'm getting that I need to like become more comfortable with this and I feel like maybe I need to start having some conversations.

Where can we send people? Are there resources on the EndWell site or other places you would send people who really want to start thinking about this in a more deliberate, meaningful way? 

Shoshana Ungerleider: There's so many amazing resources out there. I mean, certainly I would point you to EndWellProject. org. We have a lot of written content as well as all the videos.

So many of our speakers have done just such a beautiful job of talking about this and you could certainly search by whatever you're kind of looking for. So I think that's a great place to start. I would encourage people to listen to my podcast, which is Before We Go. Hopefully by hearing my story, it might give you a place to start.

I think depending on where you're at in terms of your journey, there's a number of different organizations that give you a jumping off point. My friend Michael Hebb started an organization called Death Over Dinner, which [00:40:00] encourages people to get together over a meal and talk about some of this stuff.

I've found that many people find that an accessible way to engage for people facing grief. The, the team at the dinner party also, I'm talking a lot about food now, but it encourages people to get together who are grievers of various ages and stages in life. And then there's so many advanced care planning tools, which is really this process of getting your affairs in order and thinking about if time is short, how do you want to spend that time?

And what are your wishes? The Five Wishes is a beautiful tool that I encourage people to check out as well as the Conversation Project. Or if you just Google those, they pop up, but there's so many incredible people doing wonderful work in this space. And so I'm not doing the field justice, but I think those are at least a few places to start.

Jessica Fein: Well, that's great. Thank you so much, Shoshana. 

Shoshana Ungerleider: Thank you so much for having this conversation today. 

Jessica Fein: Here are my takeaways from the conversation with Shoshana. [00:41:00] Number one, you might be avoiding the most important conversation of your life. Thinking about mortality can actually help you live with more purpose and intention.

Number two, palliative care is not just for people at the very end of life. It's a support system available at any stage of serious illness that can improve your quality of life, help manage symptoms, and provide such critical emotional support. I wish that I hadn't shut the door on palliative care for years as I was taking care of my daughter.

Number three, you have the power to advocate for yourself. and your loved ones in health care. Don't be afraid to ask about palliative care, request detailed conversations about treatment options, and push for care that aligns with your values. Number four. Your family dynamics can make end of life decisions really complicated.

Learning to have open, honest conversations early before a crisis hits can help reduce conflict and ensure that your wishes are respected. It also makes it [00:42:00] much easier when you're having to make decisions on behalf of somebody you love. Number five, grief and joy can coexist. Just because you're facing a difficult life transition doesn't mean you can't find moments of humor, connection, and beauty.

Number six, you are not alone in finding these conversations tough. Even a doctor like Shoshana who specializes in end of life care found navigating her father's illness challenging and learned valuable lessons about health care and family support. And number seven, storytelling can be a powerful tool for understanding and processing difficult experiences, whether that's through podcasts like this one, films, books, conversations.

Sharing our stories helps normalize these universal human experiences. Thank you so much for listening. This was such an important episode. If it meant something to you, I hope you'll take a moment and share it with a friend. And don't forget to rate, follow, review this show. That is how we can ensure more people find it.

Have a great day. Talk to you next time. [00:43:00]