There Is Hope

Summary

Before We Go: Episode Summary - "There Is Hope"

Before We Go is a deeply personal and emotionally charged podcast hosted by Dr. Shoshana Ungerleiter, a physician, science journalist, and founder of the nonprofit organization EndWell. In the episode titled "There Is Hope," released on October 8, 2024, Dr. Ungerleiter shares her poignant journey navigating her father Steven Ungerleider’s terminal pancreatic cancer diagnosis, exploring themes of mortality, family trauma, and the complexities surrounding end-of-life choices.

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Introduction to the Episode

Dr. Shoshana Ungerleiter opens the episode by recounting the moment she received the life-altering phone call from her father. [00:06] She describes the initial conversation where her father revealed the presence of a pancreatic mass, prompting immediate concern due to the aggressiveness of pancreatic cancer.

Notable Quote:

"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. We need to do more tests."
— Dr. Shoshana Ungerleiter [00:06]

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The Diagnosis

Dr. Ungerleiter delves into the grim prognosis associated with pancreatic cancer, highlighting its typically late detection and limited treatment options. She emphasizes the emotional and physical toll of chemotherapy, which often results in a reduced quality of life.

Notable Quote:

"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."
— Dr. Shoshana Ungerleiter [01:06]

Her husband, Ed Aton, recalls the pervasive fear surrounding the diagnosis, acknowledging the family's long history with cancer and the weight of past losses. [00:48]

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Family History and Emotional Impact

The episode explores the deep-seated trauma within the Ungerleiter family related to cancer. Dr. Ungerleiter reveals how her father’s brother succumbed to the disease, shaping his and their family's perceptions of mortality. [02:03]

Notable Quote:

"The whole thing was really surreal and shocking at the same time. I almost had been expecting this phone call my whole life."
— Dr. Shoshana Ungerleiter [02:03]

Through candid conversations, including those with her sister Arielle, Dr. Ungerleiter underscores the silent burdens carried by her father, stemming from unresolved family tragedies.

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Exploring Treatment Options

Following the diagnosis, Dr. Ungerleiter and her family consult with Dr. Steve Vargas, her father's primary care physician and family friend. [16:02] Dr. Vargas presents treatment choices, including traditional chemotherapy, hospice care, and the emerging option of medical aid in dying.

Notable Quote:

"Medical aid in dying is an option that patients in some states have whereby when they have a terminal diagnosis... they can control their destiny and take part in deciding when they would like their life to end."
— Dr. Steve Vargas [18:28]

This conversation marks a pivotal moment, introducing complex ethical and emotional dimensions to the family's decision-making process.

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Medical Aid in Dying

A significant portion of the episode is dedicated to understanding medical aid in dying. Dr. Ungerleiter explains the legal framework, currently sanctioned in ten states and Washington, D.C., detailing the procedural safeguards required for eligibility.

Notable Quote:

"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."
— Dr. Shoshana Ungerleiter [23:01]

The discussion highlights the personal empowerment and peace it can afford patients, juxtaposed with the emotional complexities faced by families and healthcare providers.

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Perspectives from Experts

The episode features insights from Steve Einstein, a hospice nurse with three decades of experience, who shares the profound impact medical aid in dying has on both patients and healthcare teams. [23:22]

Notable Quote:

"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. And there's nothing but love about it."
— Steve Einstein [25:28]

Einstein underscores the dignity and agency patients gain through this choice, emphasizing the compassion and support extended by their loved ones.

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The Role of EndWell

Dr. Ungerleiter discusses her nonprofit, EndWell, founded in 2017, aimed at integrating end-of-life conversations into everyday life. [02:03] She elaborates on the organization's mission to provide resources and support, ensuring that individuals and families can approach death with intention and alignment to their values.

Notable Quote:

"We'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?"
— Dr. Shoshana Ungerleiter [02:03]

EndWell serves as a platform for fostering meaningful dialogues around death, celebrating life, and empowering personal choice.

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Conclusion and Teaser for Next Episode

As the episode nears its end, Dr. Ungerleiter reflects on the options her father faced and the family's diligent pursuit of expert opinions. The narrative builds anticipation for the next installment, promising revelations that will significantly influence both her family’s journey and her professional endeavors. [27:29]

Notable Quote:

"It was something that... determined the path of my dad's cancer journey, something that would impact me and my entire family."
— Dr. Shoshana Ungerleiter [27:29]

She invites listeners to continue following her story, encouraging them to engage with the community through social media and upcoming events.

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Key Takeaways

• Personal Journey: The episode offers an intimate look into Dr. Ungerleiter’s experience with her father’s terminal cancer, highlighting the emotional and practical challenges faced by families.

• Medical Aid in Dying: A thorough exploration of medical aid in dying, its legal status, ethical considerations, and profound impact on patients and their loved ones.

• EndWell’s Mission: Emphasizes the importance of open conversations about death, advocating for a societal shift towards accepting and preparing for the end of life with grace and dignity.

• Expert Insights: Contributions from healthcare professionals provide a nuanced understanding of the options available to terminally ill patients and the support systems surrounding them.

Before We Go masterfully intertwines personal narrative with broader discussions on mortality, offering listeners both emotional resonance and informative perspectives on navigating life’s most challenging moments.

Transcript

[Dr. Shoshana Ungerleiter]

It 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. We 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.

[Ed Aton]

You 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.

[Dr. Shoshana Ungerleiter]

I immediately jump 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. And 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.

[Ed Aton]

You told me that you were scared because given everything that had happened in your family, that was a real possibility.

[Dr. Shoshana Ungerleiter]

And my dad was scared, too. 25 years before he had. 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. So 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. I'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. We'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? But 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. This is Before We Go Episode one There Is Hope hey there, it's Shoshana. I'd love for you to join me for this year's EndWell forum on November 22nd. It's streaming live and it's free to register. EndWell is a one of a kind gathering that's all about inspiration, connection, and finding new ways to live fully, even in the face of life's biggest challenges. This isn't just an event about end of life. It's about affirming what matters most and how we all live. You'll hear from actors, artists, authors, healthcare innovators and spiritual leaders all sharing heartfelt stories and perspectives that lift us up and invite us to rethink how we connect, love and leave a lasting impact. For those who join, this experience is often life changing. Past participants have left inspired with new ideas, deep connections, and a sense of purpose that they've carried back into their lives and communities. So if you're looking for something meaningful that reminds you what's possible, register now for the free [e-mail] I'd love for you to be a part of it. I want to tell you a bit about my dad and to do that, I'm going to go back to October 15, 2016, the day I married my husband, Ed Aton.

[Ed Aton]

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. And you partied.

[Dr. Shoshana Ungerleiter]

I did.

[Ed Aton]

You went hard at our wedding.

[Dr. Shoshana Ungerleiter]

Yeah.

[Ed Aton]

You had a lot of fun.

[Dr. Shoshana Ungerleiter]

It's true. We really partied that night. And I remember Multiple times. Just looking over and seeing my dad beaming. Stephen 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.

[Ed Aton]

Your dad was such a character. He had this scarf, right? Wasn't he wearing the scarf at the wedding?

[Dr. Shoshana Ungerleiter]

Yeah, he had a tuxedo.

[Ed Aton]

Yeah, he, like, was wearing a scarf.

[Dr. Shoshana Ungerleiter]

Like, he was like, scarf.

[Ed Aton]

It was so great. And you could just tell he was so happy for us. And he was also like loving father of the bride mode. Right. Like, I mean, he basked in that.

[Arielle Ungerleiter]

I don't have to brag, but if you don't mind, I will.

[Ed Aton]

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.

[Arielle Ungerleiter]

I think Shoshana Ungerleiter is the first and maybe only baby who came out with a book or perhaps a baby kindle in her arms.

[Ed Aton]

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.

[Arielle Ungerleiter]

Her impressive academic career, med school. At the top of the bunch.

[Ed Aton]

Probably. I was expecting, you know, 80% of the things that he said to be true. That was probably an expectation that was too high in hindsight. Definitely don't let the truth get in the way of a good story kind of guy.

[Dr. Shoshana Ungerleiter]

Yep.

[Arielle Ungerleiter]

She did take time out, which many of you may not know, to play basketball. And she had a. She has a really mean three point shot. I mean, we're talking serious shot.

[Dr. Shoshana Ungerleiter]

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. Like, I was good at tennis, but not that good.

[Ed Aton]

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. But, 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.

[Dr. Shoshana Ungerleiter]

Definitely not.

[Ed Aton]

But he gave it his all. And he spoke from the heart. He did, that's for sure. And he was really happy.

[Arielle Ungerleiter]

Before I leave, let me say a few words about Ed, or Eddie, as he is affectionately known.

[Dr. Shoshana Ungerleiter]

But instead of saying a few words about Ed, my dad decided to sing them.

[Ed Aton]

Sugar pie, honey bun, sugar Pie, pie.

[Dr. Shoshana Ungerleiter]

Honey bun, you know that I love you.

[Ed Aton]

Our relationship was deep and really meaningful, but it was also really fun. Like, I had a lot of fun with your dad.

[Dr. Shoshana Ungerleiter]

My dad talked about some of those fun times in his speech.

[Arielle Ungerleiter]

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 gonna believe this. He got the security guys to start singing with us, and we had a party. It was awesome.

[Dr. Shoshana Ungerleiter]

That story is 100% true.

[Arielle Ungerleiter]

Let's give it up for Shoshone.

[Dr. Shoshana Ungerleiter]

My 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. Almost 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. You know, it was a quick trip on the freeway to go see him, which I did almost immediately. So it did take a couple of weeks to get that diagnosis. What was the mood like during those weeks?

[Ed Aton]

The way I remember it, it was a drip drop of bad news.

[Dr. Shoshana Ungerleiter]

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 like 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?

[Ed Aton]

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. I just knew it was going to be really bad.

[Dr. Shoshana Ungerleiter]

From 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.

[Ed Aton]

At 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.

[Dr. Shoshana Ungerleiter]

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 use 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. So when cancer took that from him and he found himself really suffering, he took matters into his own hands.

[Ed Aton]

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 carried with them from that experience.

[Dr. Shoshana Ungerleiter]

It was something that my dad never talked about with me and my sister Arielle.

[Stephen Ungerleiter]

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.

[Dr. Shoshana Ungerleiter]

Yeah, I don't. I don't know that I ever did either.

[Stephen Ungerleiter]

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 did, he chose to not tell me. I think maybe he didn't want me to carry that, the burden of knowing.

[Dr. Shoshana Ungerleiter]

And do you think that affected how dad reacted when he got diagnosed with cancer?

[Stephen Ungerleiter]

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 can only. 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.

[Dr. Shoshana Ungerleiter]

The 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. His name's also Steve.

[Dr. Steve Vargas]

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 need 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.

[Dr. Shoshana Ungerleiter]

I love that. And what kind of person was my dad?

[Dr. Steve Vargas]

I would say, first and foremost, he was enthusiastic about life. He just, you know, really engaged in life, and it was important to him, and there was a lot of. 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 at 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.

[Dr. Shoshana Ungerleiter]

And we talked a lot about treatment options on that first visit. What do you remember of what we talked about, Stephen?

[Dr. Steve Vargas]

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.

[Dr. Shoshana Ungerleiter]

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

[Dr. Steve Vargas]

Medical 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. I don't always bring it up right at the beginning. And often you got to see how the patients are feeling, you know, 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. They 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.

[Dr. Shoshana Ungerleiter]

You're listening to before we go. I'm Dr. Shoshana Ungerleiter. We'll be right back. Medical aid and dying is becoming more accepted. It's currently legal in 10 states and Washington, D.C. 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. That's sort of the work that I do. And that's why EndWell exists, because we want to lift up possibilities for people to make their experiences around end of life and their families in line with their goals and their values. Right. And so. 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.

[Dr. Steve Vargas]

The two physicians have to meet. Interestingly, two weeks apart, you don't want people to make that decision in a moment of despair. You want them to have time to sit with that decision. After two weeks, they meet with the second doctor, and the second doctor writes a letter also that says this is appropriate, and that goes into the patient's chart.

[Dr. Shoshana Ungerleiter]

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.

[Dr. Steve Vargas]

They pass away peacefully on hospice. Their family is there. It's a beautiful death. You know, they just, they liked having the option.

[Dr. Shoshana Ungerleiter]

When patients do decide to take the medications, Dr. Vargas says that can be beautiful, too.

[Dr. Steve Vargas]

It tends to be a celebration of life with the patient right there saying goodbye to everyone. And 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.

[Dr. Shoshana Ungerleiter]

Medical aid and 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.

[Steve Einstein]

My name is Steve Einstein, and I've been very lucky to be a hospice nurse for the last 30 years.

[Dr. Shoshana Ungerleiter]

Yep, another Steve.

[Steve Einstein]

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. It's we, 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 being 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.

[Dr. Shoshana Ungerleiter]

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.

[Steve Einstein]

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.

[Dr. Shoshana Ungerleiter]

And the patient must be of sound mind when they take the medications.

[Steve Einstein]

Absolutely. 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. 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. I 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. And there's nothing but love about it.

[Dr. Shoshana Ungerleiter]

So 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.

[Ed Aton]

It was so confusing because you said, I have good news that's also bad news, but maybe good news. I think it's bad news for me, but good news for my dad, but maybe it's good news for me. And I don't. And I'm like, I can't track this. Can you just let me know?

[Dr. Shoshana Ungerleiter]

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 Britt. Our story editor is Lacey Roberts. Original music by Edward Ayton. 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 Before We Go podcast.