All's Well That Ends Well

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After my residency ended, I had an idea of my next steps. I'd had so many experiences in my training watching families navigate the end of a loved one's life. I saw the ways providers around them weren't equipped to help - and I knew I wanted to do something to change the way doctors talk about the end of life. This was years before my father's illness... long before I knew how intimately familiar my family would become with that conversation. And at the time - a new doctor, fresh from residency - I was exhausted....

Shoshana: I was very burned out. And I took a job as a hospital-based doctor, a hospitalist, and actually I was a nocturnist, 'cause I only worked the night shift. And I found myself with a lot more free time on my hands and thinking a lot more about how can we make it standard for all doctors in training to get more education around palliative care, more around communication skills? Why don't we treat having conversations about serious illness like we do an appendectomy, where you spend many, many, many hours, you know, learning how to do that procedure. We should be spending time learning communication as a procedure.

I remember feeling not really sure how to begin. But Ed remembers that time in a different way.

Ed: I keep trying to censor myself from saying really stupid metaphors.

Ed: You were like blooming. Like it was amazing. Like you were coming out of this thing and you were learning all of this stuff. You like learned that there had been financial crisis. You were…

Shoshana: I was like, What? 2008? What's a mortgage crisis?

Ed: Yeah it was – it was wild. And one of those things was you thinking about what you wanted to do next and, and the things that you'd seen, and the opportunity or the challenges. And I remember talking about it in, you know, a hundred different ways. And mean, classic for us, I envisioned you making a difference and doing something really cool. I should have known, but did not know how amazing it was going to be.

It started with a documentary film. Actually, two documentary films.

Shoshana: I was chatting with a good friend who's an ICU doctor in the East Bay of Oakland, California, and she mentioned that they were filming a documentary in her ICU and had spent six months or so just following patients and families.

My friend told me that the project was stalled. There wasn’t enough money to finish it. I was definitely intrigued and I wanted to see what they had. So I got in touch with the director, Dan Krauss, and he sent me a link.

Shoshana: And I remember being at the hospital, it was a particularly quiet night, so I was sitting in the doctor's lounge and on my iPhone watching this five minute – more of a elongated trailer – of the film, which showed the exact kinds of conversations and experiences that had been happening over and over and over. The nuanced kind of discussion about, how do we care for somebody who is this sick? What do they want, if time is short here?

Shoshana: I – I am not a super emotional person, and I was crying.

So I called the director the next day and I told him …

Shoshana: This film – it needs to be made.

I asked if there was anything I could do to help. But Dan wasn’t so confident about the film’s future.

Shoshana: I don't know that this film is gonna go anywhere 'cause we don't have funds to finish it. And I just said, well, you know, tell me how much it's gonna take and we'll, we'll make it happen. And so this was one of the very first things that I personally supported. And then asked my father actually also, if he was interested to be involved because he was dipping his toe into film as well at that point. So we did it together.

Extremis Trailer: Here's the reality, we're all going to die. Everyone standing in this room is going to die one day. And it's good to have a little bit of a say in how.

Shoshana: We got lucky in that the film got into the Tribeca Film Festival, where it premiered and then it won the film festival for the short documentary category, which totally blew me away

And then Netflix bought it and it was nominated for an Academy Award, which I still can’t really believe. And with my friend Dr. Jessica Zitter, I helped get the film screened at medical schools, churches, community centers and schools across the country…

Shoshana: And then the next film project followed a few years later with a totally different team, End Game, about hospice and palliative care. And that one also was bought by Netflix and also nominated for an Academy Award. So I got to go to the Oscars twice in my life, which is unreal.

Throughout this time, I had been going to conferences around the country, speaking, showing the films, and trying to learn about what was happening nationally and internationally in palliative care and hospice. It was a wonderful experience, but after a while, I noticed that I was seeing the same people at every event.

So I thought, what if I created a new conference that brings more voices into the conversation?

Shoshana: Patients, caregivers, physicians, nurses, but also designers and tech people and entrepreneurs and funders and media and faith leaders. All of us. Right? Because, you know, we all experience illness and dying many times throughout our lives.

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It was a scary idea. Different from anything I’d done before. Actually, different from anything anyone had done before… I talked it over with Ed.

Shoshana: Do you remember encouraging me to start End Well?

Ed: All that I feel like I did was. encourage you to give yourself permission to do it. Like, I remember you having the vision, having the idea, but feeling like you didn't have the qualifications or that there was some secret that like some, some list of things you needed to know and you didn't know what they were. So you couldn't do it. And I really just remember being like, you can absolutely do this and I will help any way that I can. But I think all you need is to just do it.

Shoshana: I would not have had the courage to try something I'd never done before. Had he not given me a push and just said, Hey, just go for it. You'll figure it out.

I’m Dr. Shoshana Ungerleider, and this is Before We Go, Episode 4: All's Well that Ends Well.

ACT II

Tracy: I was first invited to go to a lunch before there was even a name. And so it was a naming lunch, and End Well came out of Shakespeare's All's Well That Ends Well.

That’s Tracy Wheeler. She’s now the executive director of End Well and a dear friend. We met for the first time back when I was developing the idea for a conference on end of life issues, and she was brought on as a consultant.

Tracy: It was March 10th, 2017. And I can't remember what I was wearing, but it was before the, what I call the great mold event in my closet. So it was probably pretty fabulous.

Tracy: I just heard so much about you. I'd heard that you were this incredible young physician who had this vision that was so different than anybody else's in health care, in terms of how to think about end of life, how to talk about end of life. So I was really excited to meet you. And then when I met you, of course, I was just like totally blown away because everything I'd been prepared for, you were even more than that.

Shoshana: I don't remember what we talked about. But I remember quickly realizing she was the smartest person in the room and I needed to work with her. She just blew me away.

Tracy: And you were just immediately, I felt like you were meeting me. You weren't meeting like another member of the team. I mean, you were, but I felt like you really wanted to know who I was. And I loved that.

Shoshana: Tracy is like my other hand, kind of, we somehow are just incredibly in tune, like synced with each other in terms of our thinking about things.

Tracy: It's amazing how many times we'll text or call each other and say, I have this crazy idea. And the other one will say, Oh my God, I was just thinking about that, or I was just reading about that.

And so Tracy joined the team putting together the first End Well conference. We scheduled the date – December 7, 2017, rented a hotel ballroom that fit 400 people, and recruited about a dozen speakers to give story-based, TED-style, 15-minute talks.

Shoshana: We actually weren't sure if anyone would show up to this conference. It was unlike anything I had ever been to or heard of. We ended up selling out three months in advance and having hundreds of people on the waiting list to come to this event.

Tracy: So we knew people were coming. That was very exciting. It was in that hotel ballroom, um, which we tried our hardest to make look beautiful, but was complicated because the speakers were sort of near the catering section. It had been really, really difficult – and I'm not even sure if you knew how incredibly difficult the tech rehearsal had been. We were terrified. Honestly.

Tracy: I remember walking into the room and already people were kind of like buzzing because it didn't feel like a typical healthcare event. And I think a lot of them were there because they'd heard about you, they were intrigued by the name, but they had no idea. I remember kind of cruising around and people were introducing themselves and overhearing people saying things like, well, I'm a hospice nurse. Or my mother died and I just, you know, felt it could have gone differently. And there was a sense of anticipation in the room. And I think we were all a little bit like, this is either going to blow their minds in a good way, or they're going to be like, what, what the heck just happened? You know, how does all of this make sense? And we didn't know. You know, we didn't know.

Shoshana: I invited a bunch of my friends to speak. People that you wouldn't expect at a conference about end of life. My husband's friend, Ali Shaheed Muhammad, who's in a tribe called Quest.

Ali at End Well: There are a lot of rappers who sensationalize or romanticize the idea of dying as a way to maybe immortalize who they were if they can die a magnificent death. And I think unfortunately the way that it comes out is, is very destructive and not constructive.

Tracy: There was a moment and I don't remember, you know, at what point during the day it was, but there was this moment when I remember we all looked at each other and went, holy shit, it's working. Oh my God, this is happening. And it's crazy. coming together. And it's so beautiful.

End Well: When it comes down to it, a couple of questions really matter. And the first of those is, Am I loved? You know? And did I love well?

Shoshana: And we started putting the Ted style content online on social media in short one to two minute clips. And they started going viral, like organically to tens of millions of people. And that kind of blew me away 'cause I didn't even really understand social media.

JJ Duncan at End Well :28 - I love thinking about stories because I'm a professional Storyteller. I'm a TV producer... 0:56: I've come to learn that evidently we did used to be better about about telling our death stories because back in the day we died at home.

Tracy: And then we started to see our work, you know, appear in this whole other context and began to say, wow, like this is a platform. It's not just a one day event. This has so much resonance and really long legs. And so how do we begin to think about where those legs can take us?

Tracy: And then of course it immediately became, because it's you – it was immediately like, well, what about season two? Like, how are we getting, you know, can we do this again? Do you think we can do this again? Can it even be better?

Shoshana: And then we did the conference again and sold out again and then again, and, um, started inviting celebrities to speak on stage about their experiences alongside wonderful, everyday heroes and researchers.

Tracy: It's often times like, wow, they said yes.

Shoshana: Like, Taraji P Henson and Maria Shriver and Tim McGraw.

Tim McGraw at End Well: 04:57: As an outsider when you first step into that situation for the first time with your family in a serious situation and a serious illness like that it really it would be like stepping into a Nashville studio and trying to read a music chart and trying to figure out what was going on. It's - it's speaking a different language and it takes takes a lot to sort of get around that process and and begin to understand anything about it.

Tracy: They're getting it like they're getting that this is a bigger movement and that this movement – Esther Perel, you know, working with her was so amazing because she at first was like, I don't know. Are you sure? I'm not really sure that, that this is something I can talk about. And then within one conversation, you know, we were just like at it

Esther Perel at End Well: So people, it's the middle of the afternoon and you have been listening to all kinds of aspects of the human condition, and yet there is one primary dimension of our lives that has basically been completely left out, which is? (Sex!) Thank you. (laughs)

Tracy: I remember when you and I sat down and we were doing like our five year planning and one of the things we wanted was for celebrities to come to us and say they wanted to be on the stage. Last year was the year where it was like a breakthrough where people were saying, you know, they were, they were DMing you and they were like, Hey, how do I get on the stage? I have something to share!

End Well: Hi, Tig. (Hi.) Thanks for being here.

In 2023, comedian Tig Notaro joined me on stage to talk about performing stand up after a devastating breast cancer diagnosis.

End Well: My fear was that if I did bomb, and I died, that people would be like, did you see her last show?

Shoshana: You know, it's mostly very freeing to be like, to feel open to have these kinds of conversations. And it's more helpful than not. I think it's more life affirming than people think. And these conversations, they don't have to be sad and morbid and dark. Sometimes they are. But sometimes they're, like, funny.

Julie - IG Live: Can you hear and see me okay? (I can hear and see you great. What about me?) Perfect.

Through my work with End Well, I’ve met a lot of people who feel the same way I do about all of this. People who think deeply about the end of life and how to make it less difficult for everyone involved. When my father got sick, I turned to some of these people for help and advice. And I want to introduce you to one of them now.

Shoshana - IG Live: I am just delighted to get to have hospice nurse Julie on with us today. This is our very first End Well Live. (It is so nice to meet you, by the way.) Oh my gosh! I know. I feel like we're friends. (Yeah. I feel the same way though. I feel the same way. I feel like we already know each other, but we haven't even spoken.)

ACT III

Julie: My name is Julie, Julie McFadden. I'm a hospice and palliative care nurse.

Julie and I have had many conversations since that first Instagram Live.

Shoshana: How do you and I know each other?

Julie: The internet girl. Right? That's how we met. I mean, you reached out to me. Like, you reached out to me on TikTok.

Shoshana: I think on Instagram. Cause I don't mess with that TikTok stuff

Julie: But I'm trying to think of like when – cause we like became fast friends, I feel like.

Shoshana: We did. We met up in L.A. We got coffee, like, in Beverly Hills and went on a walk.

Julie: And it was like instant. I felt like instant friends.

Shoshana: I know. I feel like I had, like, known you forever. Like, we just talked and talked and talked. And then we've been friends ever since.

Julie: And we've been friends ever since.

Like many of us who do this work, Julie didn’t start her career working in hospice.

Julie: I was an ICU nurse for many years. So for about eight years, I was an ICU nurse, which I did like ish. Started getting passionate about really educating and being open and honest about death and dying, which I felt like we were not doing very well in the ICU. Um, and then the more I got into that, the more I thought, Oh, I want to be a hospice nurse, I think. I think. I'm going to try it. And then I tried it and I did love it. I loved it.

Julie: Nursing can really feel really thankless and like task oriented and like, does it matter? Doesn't it matter? Am I really helping? It's hard to know, because it's so fast and you're constantly running around. Hospice does not feel like that.

A few years ago, Julie started going on social media and sharing really powerful personal stories about her experiences taking care of dying people, dispelling myths about hospice and normalizing conversations around death and dying.

Julie First TikTok: Hospice nurse Julie here. Uh, guess what? Our bodies are amazing. So did you know that we are biologically built to die?

Shoshana: You've said, Julie, that you – and I agree with you – feel that the way that we view death and dying in America is a public health crisis. What do you mean by that?

Julie: Our healthcare system is so based on survive and live no matter what – which is unhealthy because that's not real life, we're all going to die – that I think people, actually suffer, far too long because of this resistance of death and this refusal to admit that it's coming to talk about it to God forbid, plan for it. Like we plan for everything! We plan for everything, Shoshana! We plan for babies, moving, a job, vacations, but never death.

Julie: To me, death is not the worst possible outcome. Suffering is far worse. And I've seen it with my own eyes. I'm sure you have too. We as healthcare workers work within a healthcare system that doesn't help us give great care, including the time we need to talk to people about end of life planning. That takes time. At least right now it does because we're so not used to talking about it in our culture, so it takes a lot of time to kind of like get in there to be able to talk to somebody. And our healthcare system doesn't allow that. So it doesn't get done and people suffer.

Shoshana: What most people don't realize about hospice is it's not 24-7 care. The situation is such that there just aren't enough providers, there isn't enough support to go around. The care falls on family and other loved ones to take care of the person. Because at this stage, not always, but a lot of times people are spending more time in bed, less able to move around, sometimes less able to eat and drink or get up and use the bathroom themselves. So unfortunately hospice leaves a lot of work that is complicated to untrained people

Shoshana: What is it like for people who don't have a medical degree to have to be basically home or somewhere caring for a loved one when this is all really complicated?

Julie: Generally speaking, whether you're a medical professional or not, taking care of your loved one at the end of life is just totally overwhelming. You don't know what to expect. You've never seen it before, usually. Then on top of that, it's your loved one that you're losing and hospice helps ish. You know, like I love hospice. I'm a hospice worker, but I still know that we only help a little tiny bit. If you're going to be dying in your home with your family, in your home, we are not really there. We're there…kinda. Like we're there if you need us. You can call us. A nurse can visit quickly but then leaves. So you are the one doing all the things. You're the one giving the medications. You're the one making sure everything's okay. And even if everything is okay, it can still feel like…just to sit there and kind of like, allow this all to happen, I think it feels really counterintuitive.

Shoshana: So what's it like for you to walk people through this process when you kind of orient them with, with hospice?

Julie: It's a lot to go over, but I thankfully work for a company that gives me a lot of time to like talk to people and walk them through what to expect from hospice, one, what to expect usually from their disease that they're dying from how we're going to help. And by the end of that meeting, they usually look a little more relieved instead of stressed. Which is so amazing to be able to like, see that. Death is so unknown and like the end of life is so unknown and you feel so out of control to give them a little bit of like, this is kind of how it's going to be like, I think it does help.

I believe that when people have a clear understanding of what to expect when their loved one becomes seriously ill, it can make a huge difference in helping them make informed decisions and ensure they receive the care that’s best for them. And Julie doesn’t just tell people what to expect. She shows them.

Julie YouTube - Active Dying: This is the most accurate video I have been sent of someone who is truly in the actively dying stages.

Julie: A couple of years ago, I asked my followers if they were willing to send videos of their actively dying loved ones. And so Shoshana, I had to hire an assistant. That's how many people sent me videos. (Whoa.) Because everyone was like, I wish I would have seen this. I wish I would have known what this looks like.

Julie TikTok: The death rattle is the most normal thing and to be expected at the end of life. However, if you're not used to hearing it, it can feel like the scariest thing you've ever heard.

Julie: And I try to be as gentle and as, like, trigger warning as possible, because it is something we're not used to seeing.

Julie YouTube - Active Dying: So trigger warning, here is the video.

Julie: And I think it's the best thing I've ever done out of all the videos I've made. I think those kinds of videos where I show actively dying is something I'm truly, truly proud of, and I feel like will truly, truly help people. And it's the scariest because people – not everyone wants to see that, right? I get in trouble basically on social media for doing it. And they, they threatened to like shut down my account and do all these things. But I continue to do it because I think it's the most important thing. I think that's the most important kind of video I can put out there. Because people need to know what death looks like. It looks scary. And people need to know that. And it's not – it doesn't have to be scary, but it does look scary. And it's really going to look scary if you've never seen it before.

As my father was actively dying, Ed was concerned that he might be in pain. So he googled death rattle and came across Julie’s video.

Shoshana: And it was so – so helpful for him and he's just incredibly – I know he knows you and he loves you, but he's so grateful to you, and the woman and her family, for helping him to navigate that really, really hard time. I just, I think about all the people that you're able to touch through social media and it's just truly incredible.

Julie: Well, first I love Ed. I love you and Ed, you guys are just so great. And I'm so glad he got to care for your dad. So like, seriously, like one of the greatest acts of love, like anyone can give to someone.

Julie makes a lot of content that is so, so helpful for people who are caring for loved ones on hospice.

Julie TikTok: I gave my mom morphine and an hour later she was gone. So I hear this all the time.

This is one of Julie videos replying to comments from people who feel responsible for their loved one's death.

Shoshana: So many people who've cared for loved ones on hospice feel this tremendous guilt. Like, if they're the ones who give that final dose of medication before the person dies, they believe that they've killed their loved one.

I’ve seen this happen many, many times while working in hospitals. But it really only hit home once I had to start contemplating the moment when I would give my father his last dose.

Julie: I don't even know if it's really about like, don't feel that way. I think it's more about like, you're probably going to feel that way. Cause I think you, right? Like you yourself can know that that's not true. But it's still because of grief because grief is complicated. Even if we know it's not true, we still feel that way. We still feel that hurt. We still feel – I think that's all part of grief.

Julie: Our end goal is for our loved one not to suffer, for our loved one to have a peaceful death. If they need these things to have that. Then that's what we do. And that's the gift we can give them.

Shoshana: Well, and I think it's so important for people to recognize, whether they're in the throes of caring for someone on hospice or just in general, right, that hospice is a philosophy of care that's focused on just looking at quality of life for people who are dying. By definition, you are, you know, you are dying. That's why you're on hospice. So nothing that, you know, a loved one or friend doing that's prescribed, you know, is – it's only helping. And, and if it happens to be that last dose of medicine, what a beautiful thing, right?

Julie TikTok: Your loved one, your mom, would have likely died whether that was given to her or not.

And so, Julie keeps making videos, reassuring people that they did nothing wrong.

Julie TikTok: So that's my two cents. Thanks for being here. I'm sorry about your mom. And I know it's hard.

Julie: Being able to talk about it can hopefully lessen it a bit and know that like, you're really normal. It's not true. It's not real, but it's normal to feel that way and to have those thoughts.

Julie says that if she could wave a magic wand, she’d bring 24-hour hospice care to everyone who wanted it. But that feels like a dream that’s out of reach. And that’s why she brought her message to social media in the first place.

Julie: I want to, like, educate the masses, versus, like, scream into a vacuum of other healthcare workers who also believe the same way I do. It's like, I just want people to know how to advocate for themselves because that's another thing. We don't know how to – We don't know how to navigate the healthcare system. You don't know what you don't know.

Shoshana: You really don't. And it tends to rear its ugly head in an acute crisis where you're really forced to be like, Oh my god, wait, what? The system is like this? And like, what? I have no idea where to turn or what to do. It's like, imagine if I didn't speak English or wasn't already connected into a healthcare system or, you know, it's just unreal.

Dying at home, which around 80% of people say they want… is often romanticized as a "good death," but the harsh reality can be filled with suffering and a lack of proper support, which leaves family caregivers overwhelmed and unprepared.

The true measure of a dignified death lies in the quality of care and resources available,

not merely the location. Sadly, we’re far from being able to access that in America.

Julie: It's so hard to navigate through our healthcare system. And I'm a nurse and you're a doctor and we, and it's hard for me. Hopefully we make little dents in the system Shoshana by what we're doing.

Everything Julie’s saying was about to become very important, because Ed and I, and my dad’s partner Joanna were about to become my father’s caregivers. And even with all the knowledge and training I had, I still didn’t know what I didn’t know.

Tracy: I think you texted me and said, Hey, do you have a minute? Got something important to tell you. And I just thought, Oh, no. Because you roll with everything, so I figured it had to be something pretty serious.

That’s my dear friend and End Well’s executive director Tracy Wheeler again.

Tracy: I was just really concerned, of course, that with pancreatic cancer, it was going to be quick and difficult and, um, really compressed as an experience.

Tracy: We have to think about death every day. And when that's coming up in your personal life, that's hard. It's hard to keep showing up. It's hard to give yourself the space to, process and to be stupid.

Tracy: As hard as we try and at End Well we try so hard not to have “shoulds” about what a good death is and all of that. We can't help but walk into the rooms of our loved ones with some preconceived ideas. I think expertise is a double edged sword. You know, I think that expertise is super important, but it can make us somehow think that we're not going to be affected by the things that we're experts in. And there's, I mean, we'll just say it for what it is. You are a high performing person who wants to do everything really well. And there is no way to get helping somebody else who's dying done perfectly. It is the most imperfect experience because it exposes and it relies on our imperfections, right? I mean, it's just so human.

Tracy: How is Shoshana going to do this? How is she going to be able to step out of this role of being a daughter and also somebody so immersed in end of life. How do you kind of, turn that volume down so you can really be present with what's happening?

And, if that wasn’t enough, I would soon add a third title to my growing list: doctor, daughter and ... patient.

Ed: I was like, well, it's very clear you're going to have these surgeries. I did not realize that you were ready to go. Like, you got the information and you're like, let's go now. I should have probably seen that coming, but I didn't.

That’s next time on Before We Go.

Before We Go is a production of Podcast Nation and me.

Our production team includes Karen Given, Abby Williams and Madison Brit.

Our story editor is Lacy Roberts.

Original music by Edward Aten.

I’m Dr. Shoshana Ungerlieder…. If YOU like what you’ve heard, please tell a friend. You can also leave us a review on your favorite podcast app, it helps people who need us find the show.

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