A special new podcast from Dr. Shoshana Ungerleider

0:00Hey, TED Health listeners, this is Dr. Shoshana Ungerleider, and I want to share something with you that I've been working on for a long time. It's the first episode of another podcast that I think you'll really like, called Before We Go. I think you'll get a lot out of it, whether it's comfort, insight, or maybe a sense of connection. The episode covers a lot of the same themes that you hear about on TED Health. It starts with a medical diagnosis and ends with a scientific advancement that's brought hope to millions of people. But this story is personal to me, because it's my family's story. I hope you like it.

0:38And if you do, please follow Before We Go on your favorite podcast app so that you can listen to all eight episodes when they become available. And please tell your friends about it. Believe it or not, that's actually the best way to help others and make sure this podcast reaches the people who need to hear it.

1:00it was on a weekend and i often talk to my dad certainly on the weekend so when i got the phone call from him i thought we would just be catching up about my recent trip but i could tell that there was something different about his voice he sounded just kind of worried he said shosh There's a mass in my pancreas.

1:30We need to do more tests, and I just wanted to let you know, but don't tell anybody. And I clarified, is it okay if I speak to my husband? And he said yes.

1:44You and I were talking about it in this context that it could be really bad. And I remember just like you and I talking to each other and being close and worrying and hoping that this was not what we were really scared that it was going to be. I immediately jumped to, oh my gosh, well, what if this is the worst pancreatic cancer? Pancreatic cancer is one of those diseases that as a doctor, you're like, that is what I do not want. ever. It's almost uniformly caught at its latest stage, which means that the cancer is inoperable and there is no cure. People often only live three, six, maybe nine months.

2:38And if you do opt for chemotherapy, it's pretty horrible. People have virtually no quality of life with it. It's just really, really hard. You told me that you were scared because, given everything that had happened in your family, that was a real possibility. And my dad was scared too. 25 years before, he'd seen his mom go through this. And then a few years after that, my uncle died, my dad's brother. So he really had this very negative, dark idea of what was going to happen to him. The whole thing was really surreal and shocking. At the same time, I almost had been expecting this phone call my whole life.

3:34So many people in my family have had cancer, have died of cancer. I just was planning for it to happen to one of my parents and even happen to me one day.

3:53I'm Dr. Shoshana Ungerleiter, and as surreal as all this was, I had a lot of knowledge and support to help me navigate my father's illness. I'm an internal medicine physician, and early in my training, I noticed something that didn't sit well with me. We do some wild things to keep people alive, and it's not always what they want. In 2017, five years before my dad got sick, I founded an organization called Endwell, focused on making the end of life a part of life. And since then, I've learned a lot about how to make dying a little less hard for everyone involved.

4:40We're all terminal, regardless of whether we have a diagnosis or not. And so, so much of what I'm always trying to think about is how can we live in the present moment? How can we operate day to day knowing that time is limited?

5:01But even with everything I knew and all the support that we had, it was still so hard to confront my father's mortality. This journey would challenge all sorts of things that I thought I understood about the end of life. But it offered me something else. The chance to better understand my genetic fate and to lower my risk of developing some of the cancers that have plagued my family.

5:33This is Before We Go, Episode 1. There is hope. I want to tell you a bit about my dad. And to do that, I'm going to go back to October 15th, 2016. The day I married my husband, Ed Aiton. You may kiss the bride. Our wedding was easily the best day of my life. even though it was the first time in recorded history that it has rained in San Francisco on October 15th. You know, you go to weddings, and weddings are fun. And then there are those weddings you go to where people are so excited about the couple, you can, like, feel it. This was one of those. And you were the most wonderful shosh. And I got to marry you.

6:23And you partied. I did. You went hard at our wedding. You had a lot of fun. It's true. We really partied that night. And I remember multiple times just looking over and seeing my dad beaming. Steven Ungerleiter, the proud father of the bride. My dad was a sports psychologist. He'd written books and produced documentaries. He started flying helicopters in his 70s. He was a really interesting and successful man. People often described him as larger than life. Your dad was such a character. He had this scarf, right? Wasn't he wearing this scarf at the wedding? Yeah, with this tuxedo. Yeah, he was wearing a scarf.

7:09This white scarf. It was so great. And you could just tell he was so happy for us. And he was also loving father of the bride mode, right? Like, I mean, he basked in that.

7:26I don't have to brag, but if you don't mind, I will. He's the kind of guy that you give him a mic and he's going to have a great time. And he nailed it. I think Shoshana Ungerleider is the first and maybe only baby who came out with a book or perhaps a baby Kindle in her arms. One of my favorite pictures of our wedding is us sitting at the table and we are both dying laughing because your dad is telling stories that are completely untrue. Her impressive academic career, med school, at the top of the bunch. Probably I was expecting, you know, 80 percent of the things that he said to be true. That was probably an expectation that was too high in hindsight.

8:10Definitely don't let the truth get in the way of a good story kind of guy. She did take time out, which many of you may not know, to play basketball. And she has a really mean three-point shot. I mean, we're talking serious shot. I guess that last part is true-ish. Although I'd say my inside jumper was much better than my three-pointer. I think he said I was like a state champion tennis player. That was definitely not true. I was good at tennis, but not that good. I just remember multiple times you would just lean over to me and be like, not true. And then you'd say something else and you're like, also not true.

8:47But, you know, I mean, emotionally, he was capturing the immense love he had for you and your achievements. It probably would not survive a fact check. Definitely not. But he gave it his all and he spoke from the heart. He did. That's for sure. And he was really happy. Before I leave, let me say a few words about Ed or Eddie as he is affectionately known. But instead of saying a few words about Ed, my dad decided to sing them. Sugar pie honey bun. Hey! Sugar pie honey bun. You know that I love you. Our relationship was deep and really meaningful, but it was also really fun. Like, I had a lot of fun with your dad.

9:42My dad talked about some of those fun times in his speech. We were in Costa Rica a few years ago, and we were partying late at night on Christmas Eve. The hotel security came, and Ed serenaded them with Feliz Navidad. I mean, the guy's got a voice. He's got some pipes. You're not going to believe this. He got the security guys to start singing with us. And we had a party. It was awesome. That story is 100 % true. Let's give it up for Shoshanet.

10:20My dad was on the dance floor all night long. He had just an epic night, surrounded by so many close friends and family. I'll always remember him that way.

10:44Almost six years later, I got the call from my dad, telling me about the mass in his pancreas. And as we waited on the test that would help confirm his diagnosis, I immediately had this feeling that we needed to be there with him to help out. I think I'm kind of the rock in the family. Everybody leans on me for support and trying to figure out what to do. And I knew that I needed to be that for him. Ed and I were living in San Francisco at the time. My dad lived about an hour and 20 minutes north in Healdsburg. It was a quick trip on the freeway to go see him, which I did almost immediately.

11:29So it did take a couple of weeks to get that diagnosis. What was the mood like during those weeks? The way I remember it, it was a drip drop of bad news. So I remember the call from my dad on his way home in the car. They finally did the biopsy. It confirmed it. Tumor had most likely spread to his liver, making him stage four, meaning that cancer was inoperable and would most certainly kill him. I remember that phone call really clearly because I stepped out of that dinner and walked around the side of the restaurant and sat on a bench. And it was the very first time that I heard my dad literally bawling.

12:26Like he couldn't even catch his breath because he was crying so hard. I just said, we're here for you. We're going to take this one day at a time. We'll get you to see the best experts on pancreatic cancer. and I had to walk back into that dinner and be back to normal after hearing terrible news. When I told you on the way home after that dinner, were you surprised? I think I was overwhelmed and felt like there was going to be a really bad road ahead and that I knew enough about pancreatic cancer to know that this was a one-way street. it was like too much for me to hold. Something was looming in our future, but I didn't even know what it was.

13:15I just knew it was going to be really bad.

13:21From my experience caring for patients at the end of their lives, I know that a terminal cancer diagnosis can be complex and deeply personal. When it came to my dad, there was another layer to it.

13:44At the time, I knew kind of like the facts of the matter, but not like really the details. I knew that both of his parents had had cancer and died from it. It was always clear to me that there was trauma around what had happened. I had always just assumed that it was because cancer is horrible. But one day when we were spending time with my family, my cousin told Ed the full story of how my grandpa Sam died. This happened many years before I was born, and decades before we used supportive care to ease suffering for dying people. My grandfather was in his 50s and had been a strong and athletic man who really valued his independence.

14:35So when cancer took that from him and he found himself really suffering, he took matters into his own hands. Your cousin told us that your grandfather had actually ended his own life in a way that a lot of your family was exposed to it directly. It just felt horrible. It's just one of those things that I couldn't even imagine, like the weight that your dad or his brother or his sister like carried with them from that experience. It was something that my dad never talked about with me and my sister, Arielle. I was always curious about it, but I felt like I couldn't talk to dad about it. That it was like, it would be too hard.

15:22Yeah, I don't know that I ever did either. Yeah, I think maybe I wanted him to have the option in his mind of knowing that I didn't know. Because I think it was really painful for dad, obviously, to lose a parent in that way. But because he chose to not tell me, I think maybe he didn't want me to carry that, the burden of knowing. And do you think that affected how dad reacted when he got diagnosed with cancer? Well, it definitely made me want to ensure that we got all the firearms out of his house, which we did. I mean, I'm sure. I mean, his mom dying of pancreatic cancer at this same age, but then his father, it probably brought back a lot of trauma for him.

16:18The day after my dad learned that his cancer was stage four, meaning that it was inoperable and terminal, I was back in Healdsburg for the appointment with his primary care doctor. and that's when my dad learned that he had other options that weren't available when his father got sick. We sat down with his primary care doctor and with the information that we had, tried to come up with what does this week look like? What does next month maybe look like? The first thing to know about my dad's primary care doctor is that he wasn't just my dad's physician. He was also his good friend and neighbor.

16:56His name's also Steve. Oh, my name is Steve Vargas. One day I got flooded in, you know, our house would get, our houses would get flooded in and I needed to get to the hospital. He called and made arrangements, pick me up, take me to work in that helicopter that day. So, I mean, we had, we had some good adventures together. I love that. And what kind of person was my dad? I would say, first and foremost, he was enthusiastic about life. He just really engaged in life. And it was important to him. And he had a lot of thoughtfulness and a lot of meaning in life. Maybe we all have a certain degree of sort of self-centeredness, like, well, what's around me?

17:38At the same time, if you looked at what he put his time into and what his efforts went towards, he really cared about people and he cared about causes. And we talked a lot about treatment options on that first visit. What do you remember of what we talked about? Steven just learned the night before. As I recall, we talked the night before the biopsies came in and the next morning you were here with him and we sat in the conference room and talked. And usually I expect the patient hasn't really been able to fully process by that time. But with your family history of cancer, he was, you know, he was really ready.

18:16And so Dr. Vargas, in that very first meeting in his office, after my dad's stage 4 cancer diagnosis, gave him two treatment options to consider. Treat the cancer with chemo or start hospice care right away. And then he brought up something else. Medical aid in dying.

18:39Medical aid in dying is an option that patients in some states have, whereby when they have a terminal diagnosis, and it's confirmed by two doctors, and they're confirmed to be of sound mind, that they can control their destiny and take part in deciding when they would like their life to end. and often they can bypass some of the more difficult stages of dying. They don't always bring it up right at the beginning, and often you've got to see how the patients are feeling before you do that. But I would share from experience that patients who are like your father, they're very engaged, they're very well-read, he's a brilliant thinker, they're male, they're used to being in charge, They're independent.

19:31They want to tell me what they want. There's a group of men like that, that they tend to be the ones that want to talk about that early because that's the way they've lived. They're the CEO. This option is important to them. They've heard of it. Knowing your dad for a long time as a friend and knowing his capacity made it easier to talk about that from the start.

19:57you're listening to before we go i'm dr shoshana ungerleiter we'll be right back

20:10medical aid in dying is becoming more accepted it's currently legal in 10 states and washington dc but there's still a lot of fears and misconceptions around it and one of the reasons I'm telling you this story is because I used to be one of those people. I thought that if we were able to provide patients with high quality care that really addressed all their symptoms, people wouldn't feel the need to end their own lives. But I learned that it can be so much more complicated than that. And my father's illness was a turning point for me. I am somebody who is all about, right, providing patients with options.

20:49That's sort of the work that I do. And that's why Endwell exists, because we want to lift up, you know, possibilities for people to make their experiences around end of life and their families, you know, in line with their goals and their values, right? And so I think medical aid in dying for some people, certainly not everybody, but is something that they would consider. If a patient decides they want to pursue medical aid in dying, they have to get two physicians to confirm that they're terminally ill and of competent, sound mind. I asked Dr. Vargas to tell us more about what happens next. The two physicians have to meet, interestingly, two weeks apart.

21:30You don't want people to make that decision in a moment of despair. You want them to have time to sit with that decision.

21:43After two weeks, they meet with the second doctor. The second doctor writes a letter also that says this is appropriate, and that goes into the patient's chart. After two physicians sign off, the patient is prescribed medications that will end their life, and then they're free to take those medications when they're ready. But Dr. Vargas says for many of his patients, that day never comes. They pass away peacefully on hospice. Their family is there. It's a beautiful death. They liked having the option. When patients do decide to take the medications, Dr. Vargas says that can be beautiful too. It tends to be a celebration of life with the patient right there saying goodbye to everyone.

22:26And there are always tears, but a lot of laughter and joy. And the patient is at peace. As you know from working with dying patients, when they're able to accept their inevitable death, and when they're given the permission that it's okay, a certain peace comes over them. and a joy, and it's very nice, really. Medical aid in dying has only been legal in California, where my dad lived, since 2016. But it's been around for much longer in Oregon. In 1997, voters approved the Death with Dignity Act, making that state the first to adopt something like this. And on the day my father died, I met someone who was there at the beginning.

23:10My name is Steve Einstein, and I've been very lucky to be a hospice nurse for the last 30 years. Yep, another Steve. I was around for the very first instances when we were present for people's intentional deaths using the medications. And it was very heavy. We hadn't done it before. And it was heavy for the whole team. There's home health aides who are even more hands-on than the nurses. There are chaplains, volunteers, the social workers. We work as a team. And when a patient decided to end their life on their own, sometimes the team was not at ease with that. They thought it was to some degree a sign of failure on our part, that we couldn't get them more comfortable that they could make it to the end of life on their own.

24:03Being present, I never had that sense. I saw it as people that were able to liberate themselves from the lives that they were done with and wanted to see end already. And they were empowered. Steve Einstein has been there as patients have chosen to end their own lives on their own terms. They're provided with a lethal dose of medications. You know, they have to be able to swallow and they have to be able to actually physically take the cup with the medications and take it themselves. It can't be given to you by somebody else. And the patient must be of sound mind when they take the medications.

24:43Absolutely. And very often within 14, 16 minutes, the patient is asleep. There's a sedative involved in the cocktail. And then that sleep gets deeper and deeper. And eventually the breathing slows down and the heart slows down and things come to a rest. Sometimes within an hour, hour and a quarter, and sometimes it takes longer. It could take five or six hours. I think the whole aid in dying is such an empowering thing for patients. When a person accepts the medications, looks at a son or daughter, is so grateful for their support. And likewise, the kids are also out of deep respect giving this medication that's going to end the life of a critically important person in their lives.

25:38I think invariably the family feels legitimately like they're giving a gift to their loved one by giving them that option and letting them go. It's a very important moment when somebody can tell their mom or dad or son, it's okay. You can let go. We're going to be okay.

26:09and there's nothing but love about it.

26:15So my dad had a few options, and it was a lot to think about. But before he made a decision, he wanted to talk to more people. My dad was really big into, you know, expert opinion, and so we contacted pretty much every expert on the West Coast, at least, in pancreatic cancer about what to do. We were lucky that they took our phone calls and said they were willing to kind of weigh in. That's when we learned something that determined the path of my dad's cancer journey, something that would impact me and my entire family. It was so confusing because you said, I have good news that's also bad news, but maybe good news.

27:01I think it's bad news for me, but good news for my dad. But maybe it's good news for me. And I'm like, I can't track this. Can you just let me know?

27:16That's next time on Before We Go.

27:24Before We Go is a production of Podcast Nation and me. Our production team includes Karen Given, Abby Williams, and Madison Britt. Our story editor is Lacey Roberts. Original music by Edward Aiton. I'm Dr. Shoshana Ungerleiter. 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. And if you'd like to see photos and videos and connect with other Before We Go listeners, visit us on Instagram at BeforeWeGoPodcast.