Language of Love with Dr. Laura Berman - Before We Go: Redefining End-of-Life Connections with Dr. Shoshana Ungerleider

Episode Date: December 4, 2024

Talking about the end of life isn’t exactly everyone’s favorite topic, but it’s one of the most important conversations we can have. Not only does it give our loved ones clarity and peace, but it also creates a pathway to stay connected—even after they’ve crossed over. Caregivers know this better than anyone; they lean into these talks because they understand how much they matter. So, maybe it’s time we stop avoiding the tough stuff and start having the conversations that truly count. In this Language of Love Conversation, I sit down with the incredible Dr. Shoshana Ungerleider to explore how to deepen our connections with loved ones—even after they’ve crossed over. Shoshana gets personal, sharing her journey of walking alongside her father during his final chapter. She opens up about how caregiving reshaped her relationships—not just with her dad, but with herself and her husband, who stepped into a caregiving role in unexpected and beautiful ways. We dive into the emotional complexities of caregiving, the impact of family dynamics during illness, and how these experiences inspire her groundbreaking work in palliative care and end-of-life issues. Here’s a taste of what we explore: Why honest conversations about end-of-life care can transform tough moments into meaningful ones The difference between palliative care and hospice care How terminal illness impacts family relationships in surprising ways The importance of informed decision-making in end-of-life situations What cultural attitudes about death and dying reveal—and how to rethink them Reshaping how the media portrays end-of-life and caregiving Remember to stay connected with Dr. Shoshana Ungerleider on LinkedIn or through her website to follow her groundbreaking work in transforming how we approach life’s transitions and end-of-life care. Don’t miss her insightful podcast Before We Go, where she explores profound and meaningful conversations about living and dying well. For additional inspiration, visit End Well, where you’ll find thought-provoking videos and tools designed to help navigate life’s most profound moments with intention and grace. Looking for more support on your journey? Visit my website to explore resources like my Good Grief course and other transformative tools to help you heal, grow, and connect. Let’s walk this path together. Learn more about your ad choices. Visit megaphone.fm/adchoices

Hey, I'm sex, love, and relationship therapist, Dr. Laura Berman. And for the past 30 years, I've been helping people just like you learn to love and be loved better. Here on the Language of Love Conversations, I'm talking to some of the world's most influential and revolutionary experts, thought leaders, spiritual teachers, and celebrities about love, sex, and relationships from a mind, body, and spirit perspective. and that way my goal is to awaken your mind, body and soul. It's time to become fluent in the language of love. Shoshana Ungerleider, thank you so much for joining us on the language of love. I'm so excited to talk to you. Laura, thank you so much for having me. It's an honor. I guess, did I reach out to you? I don't remember how we connected. I think I started following and well, because a lot of my friends were speaking there and with all the grief work

I've been doing, I became more and more aware of it. And then you and I connected and I started listening to your podcast, which we're going to get to. So at the time this episode is coming out, you've already had this amazing event that I got to go to and well, which we're going to get to just so I know, because I want to make sure we put this in the show notes for everyone. Can people still access it posthumously, not live streaming, but recorded? Yes. So at endwellproject.org, you can access all of the individual videos from the conference starting from back in 2017.

And then this year's will be available as well online and also on YouTube. Amazing. It's a really special story and a really special organization and event. And we're going to be getting into kind of unpacking it. I learned a lot about you. I know when you sent me the podcast before we go, I was like, I don't know if I'm going to have time to listen to the whole thing before or all the episodes or as much of them as possible before we talk. But I actually got a chance to listen to many of them. And not only was it a really beautiful story, I think it was certainly about addressing so many of the unspoken challenges that people face, that medicine faces in terms of really caring for people through end of life and through terminal illness, but also the way families are affected.

But it was also in many ways, to me, a love letter to your father because he was sort of the main, there were all these other elements to it, but he was the common thread. it was the story of his cancer journey and losing him to cancer and the end of his life. But you were already doing this work as a physician much, much before this happened with him. And one of the things, there were a couple of things that struck me that I just want to talk about off the cuff or not off the cuff, but off the bat. We'll see if I can find my words. You'll have to help me, Shoshana. But there were a couple of things that just about your backstory that I really related to, first of all, that you grew up Jewish in a town with no Jews. And I did too, in my case, Southeast Georgia, right on the Bible Belt. But I too had that

experience of othering and not really fitting in. And I noticed, I don't even know if you would put it this way, but I do find that people who kind of go into non-traditional fields, and I would say end of life is not your run of the mill conversation, and people who are willing to really push the envelope and challenge the world's perceptions are used to being weird. You know what I mean? Or have faced some adversity in their lives and had to figure out how to overcome them or be resilient. Yeah, but it didn't need to have learned because if you aren't fitting in, and this is the same thing, I think for a lot of people, if you've been othered, it can take you down for sure. And you can be made smaller and smaller as a result. And sometimes, I mean,

I've noticed this in my life, just with regard to the stuff that the edges that I've challenged, when people said, aren't you worried that people are going to think you're weird? Aren't you worried that people are going to be turned on? I'm like, I am used to that. I could care less about that. I got really used to that growing up. So it's not something I'm scared of. Well, and who wants to be normal? Right. That's what I always say to my kids. Why be normal? They're like, so-and-so said I'm weird. I'm like, why be normal? That's boring. So boring. So that was one thing. The other thing that I don't think you would say about yourself, but I know this about you, is that I too, like you, and I don't think I'm projecting this onto

you given the role you played in your family that I learned about in the podcast, is that you were sort of a parentified child. You were the responsible one and the one that everybody came to and the big sister kind of energy. Absolutely. Wait, am I paying you for this therapy? No, I'm just finding our common denominators. Yes. No, I mean, that's really insightful. I'm surprised you got that from just listening to like the first, probably the first episode, the second episode of the podcast, but absolutely. My parents had a really unique parenting style in that they kind of just said, Hey, we're just hands-off with you kids and your little sister's a hot mess. Love you, Ariel. But you know, she was a disaster child, really

rebellious. And they just sort of, you know, I was the one that was sort of her, her parent as through my teenage years and even into my, into my twenties. And, uh, yeah, I mean, without, without getting too far into the weeds on it. I think that's, that's absolutely right. And certainly when my dad got sick, I think being a doctor also not necessarily directly related to that, but tangential to it, you know, I was the one that the family came to for, you know, support and advice. And you were always, that is my guess. I mean, you definitely were that on a whole new level as a physician, when your dad was facing this life-threatening illness, But that was not a new role. You were stepping into a new dimension of the same role. And I definitely recognized that as well. And you also, and this I thought was really interesting and I related to as well, is that, you know, you started off as a general practitioner, family medicine practitioner.

And early in your career, when you were in residency, you had this kind of aha moment of like something is missing here that nobody is freaking talking about. Now, I had that in a totally different dimension as a clinician in training and all these learning to be a couples therapist and all these couples are bringing up these sexual issues to me. And I'm going to my supervisors and my professors and they're looking at me like some kind of pervert. like, why are these people talking to you about their sex lives? And I was like, because I'm a couples therapist and couples have sex. And I don't know why they're bringing it up. I realized later it was because somehow, because I was comfortable with the topic, they sensed that and brought it up to me, but no one could freaking tell me how to deal with it. Nobody had, there was no training about it. There was one optional elective. And I was like, what the hell? This

is not okay. And that's what really launched my whole like sex therapy advocacy. We got to change conversation. We got to start talking about this. And I was like this little pisher at 25 or 27 being like, you know, up and you, this is kind of what happened to you with end of life, right? You're in the hospital doing your residency and you're like, something is wrong here with the way end of life is being handled. And that's where it began for you. And you were a pretty young man, not that you're not young now, but you were young, young ish. Yeah. Yeah. I mean, I, I was just blown away. I hadn't had many experiences in my, in my personal life facing death and dying. I mean, certainly I talk about this on podcasts with my grandmother became ill

when I was in my early teen years, but like, you know, end of life was not on my radar as, you know, something that was interesting medically or thinking about palliative care, meaning caring for people who are seriously ill and focusing on quality of life and those kinds of things. I just, we didn't learn about it in med school. It's palliative care specifically as a newer specialty. So it really wasn't something that was part of the curriculum. And it wasn't until I was taking care of really, really sick people in the intensive care unit, many of whom were older, more frail, where I just said, this is what we do here for a 90 year old with widely metastatic cancer. Like, why aren't we talking to them about the fact that none of us

think that this person's going to survive this hospitalization? I don't think they understand that. And so I would get these kind of blank stares on rounds when my colleagues would just say, well, that's not our job. Like we need to focus on this moment in time and treating this infection and getting them breathing better. And then we'll figure out what happens next. And I just said, I think really taking a big step back from the daily labs and the chest x-ray and talking about the bigger picture here is just as important, if not more so. And why isn't palliative care involved with this patient? And why hasn't the oncologist discussed prognosis with their patient they've known for 10 years?

That to me seemed like malpractice. I was really lucky in that I trained at an institution where we actually had wonderful you know, palliative care support and integration into a lot of the clinical teams, but it was still something that was just, it just felt so obvious to me, but it wasn't really being talked about. So sort of maybe like you with, with how is it that exactly, that's what I mean. I noticed in your, in your story that there, you know, that that was a parallel. Let me just ask you this because I'm not even, and I've been through much hospice care and palliative care with people I love in my life. I'm not sure of the difference between palliative care and hospice care.

Is hospice when you've stopped all attempts at, you know, quote unquote, curing the person versus palliative care, which is what? Yeah, no, that's right. So hospice is a type of palliative care, but they are not the same thing. So, so palliative care or palliative medicine, we call But it's a specialty of medicine. It's a team-based approach to medical care, usually consisting of a nurse, a doctor, a social worker, sometimes a case manager, a pharmacist, a chaplain even, because as you can tell by the team, we sort of wrap around patients and their families and loved ones and support them through the serious illness journey and focus on quality of life, whatever

that looks like for them. And palliative care can be used at any time during the course of illness. Data show that the earlier patients and families are referred to palliative care, the longer they live with better quality of life and families are more satisfied with the care that they receive. And it turns out it's cheaper for everybody too. So it's sort of a no-brainer from my perspective. And then when patients are closer to the end of their lives, reasonably within the last

six months of life and opt for a comfort-based approach, meaning they're foregoing, typically foregoing cure. Hospice then is part of the picture where the care is sort of transitioned to truly focus on quality of life for however long someone has left. And hospice care can be provided, what's typically provided in the home, sometimes in a hospital, sometimes in other kinds of facilities, but largely the care is provided by families and other loved ones in the home. Yeah. I want to talk about that too, because I've been through that many times at this point. But so what you're saying, I think, is that palliative care is for people who are quote unquote terminal that may still be engaging in treatment.

Yeah. And it's interesting because as I was thinking about it, listening and reading about all your stuff and why this is that nobody talks about this and why medicine has kind of been designed this way. And I was trying it on just even in my own experience, going through my mother's terminal illness and my father's terminal illness and my grandmother's. I was with all of them when they transitioned. The first one was my mother, who was my deepest, most profound, impossible loss before my son. And I was determined to have a miracle. I just was convinced that there was going to be some miracle. And I also did not want to hear from the doctors that she was terminal.

I think she knew. And I remember she had this really sweet oncologist who loved her. They really cared about each other. They had a beautiful relationship. And I remember when she went in for her MRI and she came out and she's like, it was breast cancer that metastasized. And she came out of the MRI and she's like, I saw it on the screen. My chest is lit up like a Christmas tree. It is everywhere. Then she goes into the chemo lounge or whatever, and she's waiting for her oncologist to show up to tell her what she kind of already knew. And the oncologist is hiding, like literally wouldn't come, could not bring herself to come and tell my mother it's over. Like there's nothing else we can do. And I went and found her and she's like, I don't, you know,

But she basically was like, I have to tell her. But my mom was saying, she's hiding from me. She hides from me when she has bad news. Well, doctors are human beings too, right? I know. It's hard for us too, especially the longer you know a patient. Yeah. And how do you balance then?

Because part of your, I think the conversation, and we'll get more into this, that you encourage us to have, which I 100% believe is necessary and so crucial to quality of life and grace and everything else is when you decide like, okay, like when you claim I have a terminal illness, like I'm still going to try to treat it maybe, but I'm also going to think about not making it. I'm also going to maybe begin to accept that I'm not going to make it. You know, how do you help people? When is the right time, even from the physician's point of view, to enter that conversation? Because that's what I think happens often when people are just like, let's just focus on these five minutes and getting the blood pressure. okay. We're just going to treat what's in front of us and keep trying to treat it until they die, basically, or there's nothing left to treat. I think that's almost the same head in the sand

for a different reason mentality, even though the physician knows that they're probably not going to make it. Right. I think in medicine, and this will come as no surprise to you, that we see death as a failure and we do everything we can to avoid it. We certainly also have perverse incentives at play in medicine, although not directly focused on us as the clinicians. The way the system is set up is we get paid as a system to do things to people, to provide chemotherapy, to do surgery. Those are highly reimbursed, whereas sitting down and having conversations with patients, which can take 30 minutes, an hour, two hours, three hours, have to be revisited many times over the course of a patient's journey. Those barely are reimbursed,

even though those can be life-changing conversations, just like a surgery can be. Even more valuable at times, or as valuable. I would agree. And we are slowly changing medical education such that we're teaching medical students and residents how to do these things, to treat communication as a procedure, which is what it should be. But we need to value it more as a system. I think that it's really tricky and somewhat context specific in terms of when to broach the topic around prognosis. I think as you pointed out, some people are really kind of open to it and want to know all the facts so that they can best prepare themselves and their loved ones. That's one end of the

spectrum. And then the other end is like, I just don't even want to know, like, don't even tell me, you know, what can we do? What treatment is next? I'll do anything. And I think most people fall somewhere in between all of that. You know, I've always been someone that was very, very honest with, with patients. I mean, I think you first have to understand kind of what their willingness to engage with the information, of course, just like anything, but broaching the topic early is so important. So, so people can make the best possible decisions for themselves and the people that they love. And there's ways to do it in a very like humane and compassionate way, such that you're not just dropping a bomb on somebody and then saying, well, okay, I'm going to refer you

to palliative care. See you later. Or, you know, we only have one more minute to talk and then, you know, I'll see you in six months or whatever. You know, I think that there's a, there's a way to figure that out. And then I also do think that, you know, the more that we can lean on colleagues in palliative medicine, especially when, when the cases are somewhat tricky or time intensive, I think it's just so important. I think we need to be referring more patients earlier on to palliative care for consultation. Yeah. So that they can have that added support. I remember asking the hospice worker or the hospice doctor, I guess, who was entering my mother into hospice. To me, it was, and I think this is normal for most people who are facing

this. It was like entering hospice was an acceptance that there was not a chance of a miracle anymore. And so I remember saying to the doctor, like, if she goes into hospice, can she still get better? You know, can she still? And he's like, yeah. And he was so sweet. He was like, yes, of course. But I thought it was really beautiful. There was one thing you said, I believe in the podcast and before we go that doctor and you're kind of speaking to this, but I want to dig a little bit deeper into this, this idea that medicine isn't always this idea that it's a failure if you don't save the life and all that means for how doctors handle their patients, both in terms of their quality of life and their interactions and what they're willing to talk about and

everything else. There was this phrase you said at one point, the doctors can heal even when they can't cure. And does that one give me full body chills? Yeah. Well, I mean, I, I just, I think that the way, right, many of us go into medicine because we want to save lives. We want to like fasten on the superhero cape and swoop in and save the day. We're problem solvers, we're fixers. And I think when you can understand, right, that there's still a role for medicine when we shift to focusing on quality of life and move away from, you know, I have to cure this person's disease. I think allowing people to live as well as possible for as long as that is, is an important thing and part of our job in medicine. And certainly talking about reducing

needless suffering, which I think is so incredibly important and really part of the job too. Yeah. And empowering them. One of the things that I... I don't know what led me to do this. Honestly, I feel like it was divinely inspired because I sure as shit was not comfortable with my mother going. I did not for, there was not one cell in my body that was willing to let her go. But I sensed that she had, she, you know, I was a parentified child and very empathic and very responsible for her, felt very responsible for her emotional wellbeing my whole life. So I think that's why I kind of tuned into it. But I finally said, mom, this is right after she entered hospice, I was like, do you want to talk about what you want to happen or anything you want

to make sure happens after you're gone, either at your funeral or with dad or with anything else? And oh, she's like, yes. And she went on for 30 minutes straight. Everything from like, make sure you take all my jewelry because I don't want some other woman getting it to, you know, please take care of your father because he acts tough, but he's really insecure. like everything she needed all the op the whole operating manual she wanted to leave me of not only what to do with her worldly possessions but how to handle my like thing and i learned a lot of things just like really intimate sweet things about their relation like things she was worried about with him and his heart but also just all of these logistical things and that she had written

letters and she wanted the letters to go to certain people and and then after she was done she was like, oh, that felt so good. I may want to do that again. There may be some other things. I was like, all right. And it felt so wonderful. Yeah. You know, I thought of that when I read that sentence that you can heal even if you can't cure, not that I was going to be the one to cure her, but I could feel the healing for her. I mean, it wasn't healing that conversation. There were other conversations that were healing for me, but I could feel the healing for her that happened in that conversation. Yeah. You invited that, you know, by, by asking her and giving her that gift and who knows what would have happened had you not, right. Open up that conversation and,

and that can happen at any time, right. You don't have to wait until somebody's on hospice. I mean, I understand in your situation, that was really, really tough one, but we can be talking about this stuff throughout life, giving, giving our loved ones that gift of, you know, how, how do you want things to go? And what, what do you want to do with what you've, with what you've left behind? Yeah. I learned that from her and I definitely did that with my dad and with my grandmothers or my one grandmother that went after her and my second mother. I had lots that went after her and that really informed me on that. And, and also, you know, we had interviewed Alua Arthur on this show, which who I know has spoken at your events too. She's amazing.

And she speaks a lot to this idea of like having those conversations while you're well, you know, why we're so scared of talking about death as if not talking about it will keep happening. You know, let's not talk about that. Most of us have no idea how to move through loss. There's no roadmap to follow when you're trying to navigate grief. And I realized this when I lost my son three years ago. As a therapist who understood grief,

a whole new level of pain opened up to me when I lost my 16-year-old son. And since then, I have been building resources that have allowed me to navigate through loss, not only in a healthy way, but in a way that has transformed me for the better. We can move through the most terrible loss with grace. And that's why I have created the course, Good Grief, Healing from Loss with Love.

You can find it on my website, drlauraberman.com, right there on the homepage, as well as free resources letting you know how to support others who are going through loss. None of us has to do this alone. And I think that's what you're kind of facing, right, in your work. and why probably in large part, you started EndWell. So let's talk about how that started and what that is. Yeah. Well, EndWell is a nonprofit that I started back in 2017. And we put on an annual conference every year that you spoke about at the top of the hour, where we bring together people from all walks of life and professional backgrounds, from celebrities to

artists, to musicians, to faith leaders and healthcare workers and policy folks and kind of everything in between to talk about through narrative storytelling, you know, solutions to make the end of life and grief and caregiving a little less hard for everybody involved and to work together to find, you know, common solutions for that. And it really was born out of this story, right. Of where I just felt like, you know, in order to shift the cultural conversation, to normalize these kinds of discussions, we need to be talking about it in new and different ways and not just talking to each other in medicine. We need to get outside of our siloed thinking and engage more people. And so it started with a conference that honestly, we weren't sure if

anyone would show up to in San Francisco in 2017. And much to our surprise, it sold out three months in advance. And we had this crazy waiting list for people to come to a brand new conference, unlike anything else, about death and dying. And we've continued to do it every year. We were virtual during the pandemic. And now, of course, we're back in person. And we engage audiences in community online, through social media, through our website, through in-person events. And then we've also started work in Hollywood to try to influence how primetime television portrays end of life to consider more nuanced and accurate storylines. When you have a medical drama, why aren't we talking about hospice?

And why aren't we showing shared decision-making between the clinicians and patients and families? Things like that, where I think we can do a better job of priming audiences of all ages with how to advocate for yourself, certainly, and the people you love. And then, you know, how do we think about this conversation about living and ending well and how can it inform us in our lives today, whether we're sick or not, to allow us to hopefully live better by recognizing that one day life ends for all of us. Yeah, I think we absolutely can live better knowing that. But I also think we can die better.

Yeah. And that there's one of the things that I love of the many things I love about what you're doing is, you know, and that's what I do too in my own way is like taking what's in the shadows into the light. And when it comes into the light, then there's no fear around it anymore. We can actually talk about it and we can heal it and we can grow it and we can work with it and we can even see the profound beauty. And I certainly found that with everything I learned on the journey with my mother and then applied to my dad and my grandmothers and my sasa, as I called her my second mother growing up as I was with all of them. A Lua author told me I'm an

honorary death doula after all. I was able to have the most gorgeous honoring and claiming and acknowledging what was happening and what was needed for them to end. I didn't know what I was doing. I understand it now, you know, through what you're doing and what others in the field are doing and even just on my own grief journey. But I was like, I am going to honor you and really give you all. I'm helpless here, except to make you as physically comfortable to an extent. I can control that, obviously, but I, you know, but really just intellectually and emotionally complete. Like, what do we need to talk about? What do you want to know? What do I need to make sure to tell you? What do I need to forgive you for? I mean, those conversations I have with my dad, who God

bless him, is a beautiful soul, but was a toxic narcissist and emotional abuser. The conversations I got to have with him at the end of his life before his mind was completely gone to tell him that I not only forgave him, but that I was grateful for the ways that he had hurt me because I could see now how it changed the trajectory of my life and led me to the place where I could help as many people as I have and led me to choose that SOB of a cheater, horrible ex-husband who allowed me to have my beautiful eldest son, who I can't imagine life without, and all of the ways in which I not only forgave him, but I thanked him. And that I know was unbelievably meaningful to him only because for the very first time in my entire life, he apologized for something,

which was major, but I wasn't even doing it for him. In that case, I was doing it for him. And so I wasn't even anticipating that it would be healing for him. I didn't know how he would receive it, but I knew, and it was extremely healing for me. I just think there have been so many missing conversations about how to optimize that beautiful window at the end of life that we don't always get. Like with my son, I didn't get that. I've had to have that window posthumously with him, you know, communing with him on the other side in the ways I have. But when we know someone is going, that is just such a, we don't think of it this way, but I feel like it's such a gorgeous gift to explore. Oh, yeah. I couldn't agree more. And

I'm forever grateful that I was able to spend the time, the eight months I did, you know, helping to take care of my dad and that we had the flexibility in our lives. And my husband was willing, you know, to move the leave, you know, the city that we loved and, and be much, much closer, uh, to him and walk beside him in this journey. And it certainly wasn't, uh, an, an easy one and trying to figure out, you know, how do I create boundaries around, you know, I'm, I'm a daughter, not his doctor, even though I am a doctor. And then certainly through his own, you know, illness journey, learning about my own potential risk for, you know, illness and, and facing my own mortality, the whole thing. I mean, it just brought up so many things that I never

thought I would be encountering, at least at this stage of my life. And so much beauty and moments for deep connection were had. And I think it actually made my personal grief experience easier in a way. I don't know that it's like that for everybody, but because I was able to sort of slowly metabolize the grief over time. And I sort of knew what was going to happen most likely that the medicine wasn't going to be super helpful. And that in fact, he was going to die relatively quickly of this horrible disease of pancreatic cancer. Yeah. I think there's so much there when we can show up and, and bear witness and don't have to be an expert in hospice or end of life care, but just kind of being there and, and starting to have these conversations with people.

It can be really beautiful. And as you said, so healing. Yeah. And I think you did a beautiful job in the podcast of straddling, Matt, your personal journey in the storytelling, right? Your personal journey and what you were personally dealing with and your relationship with your dad and facing all of that and dovetailing with what's happening in the field of medicine and what this all means.

And I thought that was a really beautiful way to tell this story. and your husband, you know, we were talking about this before we started recording today that your husband, which I thought was really beautiful, really stepped in and took on, I don't know, was he the primary care? Like he took on a major caregiver role with your father as he was toward the end of his life. And I thought that was, I mean, my husband was extremely supportive, but he was not a caretaker. That's for sure. Yeah. It was shocking to me, really. I mean, my husband is an amazing person, but we don't have children. And so never been in a situation and thank God, I hadn't ever been ill before, knock on wood, that I'd seen him in this capacity

and he just leaned in so hard to this caregiving role. I mean, we had my father's partner was of were there as well and myself, but I mean, he was there with him like almost every day for eight months. And whether it was helping him to the bathroom or feeding him or playing music for him as he was dying or, you know, leading up, I mean, he would just go and sit and watch TV with him for hours on end just to kind of be there. They did have a special relationship. Yeah. I was going to ask, were they close beforehand? And yeah, they were close, but it wasn't something that I could have anticipated that he really would have stepped up in this way because I didn't ask him to. It'd be one thing if I was like,

honey, I really need you to do this. I'm whatever. But no, I kept saying to him, are you sure you want to do this? This is a lot. This is affecting you really personally and in major ways. Are you okay? Like you don't have to do this. And he kept just saying, I need to do this. I must be there for him. So he was really called to it in this really beautiful way. And I, you know, I have to think, and I, I think it's true that it was fulfilling for him and got him thinking deeply about his own mortality and what brings meaning and joy to his life. And, but it was just a new way that I got to know him too. I would have found that very, I would not have ever asked my husband to do it, but that degree of tenderness and compassion and show up

ness would definitely turn me on. I mean, I would find that very attractive. Yeah. No, I mean, did it, did it, I'm not, I'm not saying you got turned on while your father was at the end of his life. But I mean, in terms of the way you saw him, was that something that really added a whole new layer to your appreciation of him? Oh, absolutely. And I think it really deepened our kind of connection to one another too, just knowing him in this completely new and different way that I maybe wouldn't have ever seen, you know, had my dad not gotten sick, like you said, added real depth to the relationship. Yeah. And I think also depth to that, you know, One of the things my husband and I have talked about from time to time is the shared grief

for our son has added another layer of bonding to us because no one else on the planet can understand, I mean, other grieving parents can maybe understand it, but our unique missing of this individual brilliant soul, no one could come close to sharing but each other. I remember this friend of ours was struggling with his partner after they lost a child, and he said that one of the things that kept him going in the relationship and really wanting to work on it is that he couldn't imagine being with someone who didn't understand his loss as intimately as his wife did. I don't know that that's necessarily a reason to stay together, but I have noticed that there is a level of bonding there in that shared experience of grief, just like there would be with your sister, for instance, having both lost your father. But I think there's an added layer in terms of your husband, because I'm sure he was bonded before. He never would have done

this, but having gone through that with your dad, I imagine that his grief was very on level with yours at the end. Oh yeah. Yeah. Yeah. It wasn't just like patting you on the back, the caring husband while you grieve, he was with you in it. I'm guessing. Oh, a hundred percent. And even at times was even deeper in it than I was. I mean, he really, you know, he really experienced it so deeply. And I think it's interesting. I mean, certainly this is not my field of expertise, but what, you know, what you were saying about your, about grieving your son. And I'm, I'm just so sorry for your loss. I don't even have words really, I suspect. And you tell me if I'm wrong, but that many couples can actually turn away from each other in the context of such a loss.

And so thinking about, and certainly around caregiving experiences that are intense and it can be really obviously traumatic and some people turn away and some people turn towards each other. And I don't pretend that I understand that, but I'm just grateful that I had this experience with Ed. Yeah. I think about that a lot. I think you're someone like me who heals, learns, and teaches, right? So everything I'm going through always, it's just the way my brain works. Whatever I stumble upon or intentionally find for myself that helps, I just can't help but integrate it, systematize it, and spit it back out to help others. And I think about this with my therapist.

Couples therapists had on a lot, like what makes couples, and I've spoken to this a lot, what keeps couples together, what makes people turn away from each other, what makes them turn toward each other. A lot of it has to do with history of trauma and how they process big feelings and whether their system wants to shut down and shut out versus open wider and let in. But I remember my husband saying to me, not very shortly after Sammy died, you know, I know a lot of couples, the common knowledge is that a lot of couples don't make it through losing a child because it's so easy to turn against each other.

It's so easy to point the figure of blame. It's so easy to shut down or have difficulty with how each of you grieve. You know, he didn't say all this at the time, but he was like, I know a lot of couples don't make it, but we're going to make it. And I said, I definitely think we will, but I absolutely can tell you right now, I already know that there isn't a cell in my body or in my psyche that is going to be the same on the other side of this. And I don't know who I'm going to be yet. I have no idea. I really hope you like her, but I don't know. And I think that's part of it is that you have to be willing to evolve.

Well, in every relationship, even without that kind of tragedy, you have to be willing to evolve and grow with each other and keep your hearts open and create room and space for each of you to have your own version of the experience without making you right and them wrong. But I think a lot of it has to do with just a willingness to allow yourselves to go through it with grace together. And I think that shared experience, which because of his nature and connection to your dad, that your husband was able to have with you probably was a really beautiful extra layer of bonding. Another gift, your father's passing,

another silver lining that was left behind. Even though we would trade it all in to have them back, there are always those beautiful gifts. Yes, absolutely. I don't know. I mean, I don't know how I could have gone through it without him. It was just such a tough time.

So yeah, that's so beautiful. your, your story with your husband, thinking of, you know, talking about, you don't know who you're going to become at the end of it, but you're going to walk through it together. Yeah. And we'll see where we end up. I mean, I keep saying to him, like, I am a completely, not just because of this. I think I've had several incarnations in the 20 something years we've been together, but like, I am such a different version than the woman he married. And I keep thinking like, there's no way he's going to be able to hang with this. And he keeps rising to the occasion. But yeah, I think there's so much to explore in the landscape of relationships through grief that

nobody talks about and affects everybody. But I also think, you know, just in your area of expertise with the field of medicine, like what would you, there's so many avenues we can go here, but what would you say, you know, you most want or would want people to know not only about their options and how to advocate for themselves, but like how to navigate because the end is going to come. I mean, hopefully we'll have some advanced warning. At least I say, hopefully, maybe some people just want to zoink out or have the people they love zoink out, but yeah, but if, and when we face it and chances are you're going to face it. Yeah. What's important for us to know? Oh, man. Well, how much more time do we have here? Just in 10 seconds. So that's not, I'm just

getting, you know, time. I can answer this on so many different levels. I think that the more that we're in tune with our, with the fact that by virtue of being alive one day, this life will end. And you can think about that at age 15, you can think about it hopefully at 35 and 75 and maybe 95. And you're going to have different perspectives and ways of thinking about it based on the context of your life and the situations that you're facing. I just think that the more that we can do that, to have some kind of relationship, not that we have to accept that it's okay and you're happy about it, but asking the question of if time is short for me, which by the way, it is for all of us, how do I want to spend that time? How can we turn this into

a conversation about living and finding meaning and purpose in our lives and letting death be a teacher to keep us kind of awake to our lives. That's sort of the highest level. No, I think that's so important. And anyone who's gone through tremendous grief and come out the other side of it, I feel learns that lesson. There's a kind of liberation. I feel like grief is a portal, if we allow it to be, that transforms us and burns away everything that doesn't matter and can make you very liberated and tapped and in tuned in and self-actualized and free and brave in ways that maybe you weren't before you faced impossible loss. But I also think that end of life when we're in, I think it's so important. This is one of the

things I love about all the work you're doing that I don't think your average Joe or, or Joanne or anything in between knows how to navigate. We go to the hospital, we're sick, we get diagnosed with something, we want to be cured. And we're just following the doctor's instructions and taking as much treatment as we possibly can. And this is one of the things that I know, I haven't gotten to the end of the series yet, but I know that your dad was facing the quality of life or quantity of life, right? Like sometimes the treatments are so horrific and so limited in the lifespan they're going to give you or in the cure they're going to give you that the medicine is worse than just living out the rest of your life in grace and in your own comfort, you know, and there are those

decisions to be made. But I don't think people are prepared for those decisions or even understand that those decisions exist. And so what would you recommend if someone's listening and being like, maybe they're facing this with a family member, or maybe a family member has just recently gotten diagnosed, or maybe they just want to be prepared? How can we prepare ourselves, educate ourselves about this? It's so tough. And I think like in my dad's case, for example, we were lucky in that his cancer had a genetic mutation that then would allow him to be eligible for a more targeted therapy following his traditional chemo. And so we actually held out hope that after undergoing that very toxic intravenous chemo that we all know is so horrible, that he would have potentially a

chance for many years of life because of this targeted therapy related to this genetic. So we sort of pushed him, you know, to do chemo and hindsight is 2020, right? Because the medicine didn't work and he suffered. And had we known, we would have probably encouraged him to go on hospice right away and go, go to Hawaii and hang out and say goodbye to everybody and throw a party. Right. But, or, or opt for medical aid in dying. I think that could have been a really good option. didn't even get into that. Yeah. That's, that's for next time, but we didn't know. Right. And so sometimes you have to just make decisions with the information that's right in front of you and hope that you're doing your best, which is all we can do. I think that it's just tricky. And I think the more that we can be open and honest with patients about options. And again, this conversation about prognosis and encouraging thoughtful conversations with folks from palliative care to talk about, you know, how do we manage symptoms? How can we, you know,

walk beside you in whatever treatment path that you choose and best support you in having good quality of life? I just, I think that that goes such a long way, but I don't, there isn't a silver bullet answer here. It's hard, but I do think one thing that I gleaned from what you're saying is that if you have a loved one, you or a loved one are facing a potentially terminal diagnosis. It doesn't mean that the treatment isn't going to work. You give it your all to whatever extent you want to do, but explore palliative care at the same time. It is not admitting defeat. It is adding ancillary supports to make you more comfortable and more emotionally supported and more spiritually supported and more buffered as you go through

whatever treatment you're doing. And I feel like that is one thing, in addition to maybe talking to a certain extent about prognoses. I mean, everybody's got to make their choice about how much, you know, some people are like, no, no, no, positive thoughts only. And I totally get that. But that doesn't mean that you can't bring in the palliative support, that palliative care can be such a support and help the prognosis and that that's a takeaway from this conversation for sure that people can hear them. A hundred percent. It was so helpful for my dad.

You know, I've seen it be so incredibly helpful for many, many patients of mine. So yes, absolutely. Ask for it if your doctor doesn't readily offer it to you. And if they tell you no, go see a different doctor. Yeah. All right. That was such a beautiful conversation. Thank you so much, Shoshana.

We're going to put links to EndWell and to your website. You can learn about the documentaries that she's helped produce or co-produced or did produce and EndWell and all the other resources. Before We Go podcast. And the Before We Go podcast. Yes. Which is really, really good. I've really enjoyed it.

And I'm looking forward to listening to the rest of the episodes. Thank you. And oh, and my husband made all the music, made all the original music for the show. Wow. It was really good music. Thank you. Yeah, tell him you should make an album, a Spotify mix. Yeah, I like it.

Thank you, Shoshana. Thank you for all you do in the world and for being brave and bold and bucking the system a little bit and talking about something that is universal and so important. And well, likewise, my dear. And thank you so much for having me. All I want to do, I want to do is take you home with me. I wanna make a move, I wanna make a move But I'm too shy