Quality of Life

Summary

Podcast Summary: Before We Go — Episode 7: "Quality of Life"

Host: Dr. Shoshana Ungerleider
Date: November 26, 2024

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Episode Overview

This episode of "Before We Go" delves into the emotional and complex realities of supporting a loved one with a terminal illness, as Dr. Shoshana Ungerleider shares her father Steven’s journey with cancer. The episode is a candid, multifaceted exploration of quality of life at the end of life—how families face hope, denial, and acceptance, how mental health is often overlooked, and the vital role of palliative care. Through personal stories and expert insights, the discussion reveals the universal challenges of making decisions and finding meaning when facing mortality.

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Key Discussion Points and Insights

1. The Emotional Complexity of End-of-Life Care

• Opening Thoughts: Shoshana acknowledges the dual realities of death: "Death is a part of life and that talking about death doesn't have to be sad and it doesn't have to be depressing. But I have to be honest, taking care of someone who is seriously ill can be really, really hard." (00:00)
• Family Experience: Family members recall Steven’s dramatic personality change post-diagnosis, highlighting retreat and emotional withdrawal:
  "He died the moment he was diagnosed...he almost never left the house." (00:22)
  "Your dad retreated and hid like a dog hearing fireworks. He didn't want people to visit. He didn't want to tell anyone." (01:04)

2. The BRCA Mutation, Hope, and Treatment Choices

• Medical Hope and Harsh Realities:
  • Shoshana explains her father's BRCA mutation brought access to targeted therapies, but only after enduring challenging chemo (01:31).
  • Family members struggle to encourage optimism: "If we can cross this bridge, there is something on the other side that's worth going for." (01:49)
  • Despite seeking advice from top cancer specialists, Steven opts for local treatment, showing an ambivalence about fighting the disease (02:23).

3. Mental Health, Depression, and Stigma

• Observing Withdrawal: The family notes increasing withdrawal and lack of engagement, which they come to recognize as depression.
  • "He just went into a cocoon...It was clear he wasn't watching it [TV]." (03:14)
  • Reflecting on the narrative of cancer as a 'fight': "We could actually use a little fight from your dad." (03:41)
• Medical System Shortcomings:
  • Ed expresses frustration at lack of mental health support: "There was just a lot of reluctance to address the challenges that he was going through... something's wrong, and we need to do something about it." (23:52)

4. The Challenges of Decision-Making and Transitioning Goals

• Family's Dilemma: The tension between pushing to continue treatment versus shifting towards acceptance and comfort care is palpable.
  • "Maybe that should have been a clue...make him take a last vacation and then call it a day. I don't know. But we didn't do those things." (04:03)
• Shoshana’s Perspective: Even with resources and knowledge, the journey was still “really, really hard.” (04:57)

5. Discovering Palliative Care—A Turning Point

• Introduction to Palliative Medicine:
  • Shoshana’s early exposure and developing appreciation for palliative care: “It's the practice of medicine for people who are what we call seriously ill and really focuses on improving quality of life for patients and their families.” (07:17)
• Meeting Dr. Mindy Shapiro:
  • Dr. Shapiro’s patient-centered, candid, and compassionate approach stands out:
    "Our procedure is listening, and our skill is in discussing and guiding." (11:30)
    "He was so vibrant, and he so liked living, yet the other half of him knew that his time was limited." (09:43)
• What Makes Palliative Care Unique:
  • “Palliative care is for anybody at any phase in their illness...an extra level of support for them and their families.” (12:20)
  • Team-based and creative solutions, continuity across care settings stressed as crucial (14:49–16:23).

6. The Daily Struggles—Eating, Weight Loss, and Humor

• Physical Symptoms as Emotional Flashpoints:
  • Eating becomes a daily struggle due to pain, loss of appetite, and awkward interventions with cannabis (20:00–21:48).
  • A light-hearted moment: accidentally feeding Steven a dog’s cupcake (20:25) — “How did it taste? Bizarre...Totally bizarre.” (20:33)
• Interventions for Appetite: Attempted cannabis, gummies, tinctures, each with comical but ineffective results (21:30–22:24).

7. Grappling with Depression in Terminal Illness

• Demographics and Resilience:
  • Social worker offers insight: older white men with power sometimes lack resilience due to fewer prior hardships (22:56–23:41).
  • "Facing a terminal illness is huge adversity, and you really need resilience and grit." (23:14)

8. The Limits of Medicine and Importance of Acceptance

• Medicine’s Limits:
  • Dr. Mindy (25:59): "I think that we try very, very hard to find a pill or a treatment...but that’s just not going to cut it."
  • Shoshana: “Treating despair and dread related to a terminal illness is not always as easy as taking a pill.” (25:48)
• The Irony of Expertise:
  • Despite Steven’s career as a sports psychologist teaching optimism and visualization, he struggles to apply it to himself in his illness (26:03–27:56).

9. Transition to Hospice and Final Reflections

• Pivoting Goals:
  • After experimental treatments fail, Steven clearly chooses hospice—“just focus on his comfort.” (30:43)
  • Relief for all: “Eat when you want to eat, drink when you want to drink...play music and the kids would come and play.” (32:22)
  • "Those final days and weeks with my dad were really meaningful. Sometimes they were even funny. Looking back, I'm reminded that even in the hardest times, there can be joy." (32:49)

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Notable Quotes & Memorable Moments

• On the Difficulty of Caregiving:
  "Taking care of someone who is seriously ill can be really, really hard." — Dr. Shoshana Ungerleider (00:00)

• Describing Sudden Withdrawal:
  "He died the moment he was diagnosed." — Ed's Daughter (00:22)

• Palliative Care Philosophy:
  "Our procedure is listening, and our skill is in discussing and guiding." — Dr. Mindy Shapiro (11:30)

• On Defining Hospice vs. Palliative Care:
  "Hospice is strictly defined as care for patients who are thought to have a lifespan of six months or less. Palliative care is for anybody at any phase in their illness." — Dr. Mindy Shapiro (12:20)

• On the Challenge of Mental Health in Terminal Illness:
  "We understand that there is anxiety and there's probably depression...And because modern medicine is the way it is—take this and see how you are in two weeks. Well, that's just not going to cut it." — Dr. Mindy Shapiro (24:59)

• Humor Amid Difficulty:
  "We have a family announcement to make. Somebody has played a very mean trick on Pappy." — Child Family Member (20:25)

• Acceptance and Relief:
  "Eat when you want to eat, drink when you want to drink... it wasn’t this battle constantly of trying to get calories in him. And then we just got to play music and the kids would come and play. We would cannonball his swimming pool and just have fun." — Family Member (32:22)

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Timestamps for Critical Segments

• Caregiver Honest Reflection: (00:00)
• Father’s Withdrawal after Diagnosis: (00:22–01:04)
• Hope with Targeted Therapy: (01:31)
• Challenges with Treatment & Mental Health: (02:23–04:57)
• Palliative Care Introduction: (06:25–07:43)
• Meeting Dr. Mindy Shapiro: (08:16–15:01)
• Palliative vs. Hospice Explanation: (12:17–12:57)
• Continuity of Care Challenges: (15:01–16:23)
• Mental Health, Depression, and Stigma: (22:24–24:35)
• Expert Insight on Mental Health: (24:46–25:59)
• Applying Sports Psychology to Illness: (26:03–27:56)
• Switch to Targeted Therapy and Rapid Decline: (28:24–31:26)
• Decision for Hospice: (31:26–32:22)
• Finding Joy in Final Days: (32:49–33:14)

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Tone & Language

The episode is deeply personal, emotionally raw, yet nuanced with humor and warmth, featuring honest reflections, loving family banter, and expert guidance in straightforward, compassionate language.

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Conclusion

This episode offers a powerful, real-life look at the complications, heartbreak, and occasional moments of grace that surround end-of-life care. It highlights the critical roles of palliative care, communication, and confronting the emotional realities—especially mental health—while reminding us of the importance of agency, humor, and connection in our final days. Whether you’re a caregiver, clinician, or someone facing similar circumstances, this episode provides perspective, validation, and hope.

Transcript

[Dr. Shoshana Ungerleiter]

I always say that death is a part of life and that talking about death doesn't have to be sad and it doesn't have to be depressing. But I have to be honest, taking care of someone who is seriously ill can be really, really hard.

[Ed's Child (likely a daughter)]

My dad was this kind of larger than life personality who loved to be around people and throw parties and have a good time and laugh and swim and travel the world and try new things and fly in helicopters. He taught himself to fly when in his 70s, and he died the moment he was diagnosed. And I don't know if it was this existential fear and dread that just grabbed onto him and wouldn't let him go, but he almost never left the house.

[Family Member or Close Friend]

Your dad retreated and hid like a dog hearing fireworks. He didn't want people to visit. He didn't want to tell anyone. I don't know if he was ashamed or if he was scared, but he was so overwhelmed by it that I think he didn't want to see people, to confront it or talk about it.

[Dr. Shoshana Ungerleiter]

When my dad tested positive for a BRCA mutation, it meant that he was eligible for new targeted treatment that had the potential to extend his life for months, maybe even years. But he would first need to undergo traditional IV chemotherapy, and that was really hard.

[Family Member or Close Friend]

I remember telling him on the other side of chemo, like, there's hope, right? We have to do chemo to knock down the cancer. It's horrible. But that because you do have this mutation, there are therapies that really have given people years of good life and that if we can cross this bridge, that there is something on the other side that's worth going for.

[Ed's Child (likely a daughter)]

My dad went along with it.

[Dr. Shoshana Ungerleiter]

He bravely showed up to chemo every couple weeks for months and months. But he wasn't always the easiest patient.

[Family Member or Caregiver]

He wanted to seek advice from the best and brightest and, like, demanded to get these appointments and for you to move mountains and for me to move mountains to try to connect to people at these, you know, academic institutions on the forefront of pancreatic cancer research. And then he opted to get local treatment in Santa Rosa at, like, a regional hospital. That made no sense to me. We would have driven him, or he could have gotten a car service to drive him. I mean, he could have taken a helicopter, but he opted not to. It felt to me like he just didn't really believe in the opportunity to not die from this. Like, mentally, he wasn't in the game.

[Family Member or Close Friend]

He just went into a cocoon and he, like, sat on the couch and watched TV and didn't watch tv. He just sat there. We watched a lot of Yellowstone. It was clear he wasn't watching it because he would literally just put on a random episode every time I was there. So I've seen all of Yellowstone four times, but only out of order.

[Ed's Child (likely a daughter)]

Did it worry you at all?

[Family Member or Close Friend]

Oh yeah, absolutely. I mean, we talk a lot. You and I talk a lot about cancer not being a fight and that it's not a war and people don't lose the war. And I remember there was one conversation where we were joking. We're like, you know, we could actually use a little fight from your dad.

[Ed's Child (likely a daughter)]

Maybe that should have been a clue to us that, you know, it was time to do something different. Make him take a last vacation and then call it a day. I don't know. But we didn't do those things. Yeah, we encouraged him to keep going. I'm not sure what we would have done had we known. You know.

[Dr. Shoshana Ungerleiter]

My family was really lucky because I'm a physician and because of the work I've done with endwell. We knew more than most about what options were available for treatment for the seriously ill. And my dad had resources that he could draw upon to make things easier.

[Ed's Child (likely a daughter)]

I think we had the best of circumstances. We had all the resources at our fingertips and it was still really, really hard.

[Child (possibly a grandchild)]

Foreign.

[Dr. Shoshana Ungerleiter]

I'm Dr. Shoshana Ungerliter and this is Before We Go episode 7 Quality.

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[Dr. Shoshana Ungerleiter]

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[Dr. Shoshana Ungerleiter]

I first learned about palliative care when.

[Ed's Child (likely a daughter)]

I was a medical student, but it.

[Dr. Shoshana Ungerleiter]

Wasn'T in a lecture or reading a textbook. So there was this, I think, quarter.

[Ed's Child (likely a daughter)]

Mile long corridor between the VA hospital in Portland and the University Hospital. So we would have to traverse this thing at all hours of the day and night. It was actually good because we got our steps in. I was, I think, absentmindedly, you know, looking down at a piece of paper or trying to study or something on my walk, and I bumped into this guy and he was wearing this long white coat, which meant that he was a doctor. And I was wearing my short, you know, white medical student coat with my name on it. And I kind of looked down at the blue letters on his coat and it said palliative Medicine. It didn't really make sense to me.

[Social Worker or Mental Health Professional]

What that was at the time.

[Ed's Child (likely a daughter)]

And I think I just said, oh my gosh, I'm so sorry, excuse me. And like moved on. But I looked up what palliative medicine was and was shocked to learn that it's the practice of medicine for people who are what we call seriously ill and really focuses on improving quality of life for patients and their families.

[Dr. Shoshana Ungerleiter]

By the time my dad got sick, I was much more familiar with palliative care. But as his health declined, I found myself experiencing it in ways I had only ever seen from the outside.

[Ed's Child (likely a daughter)]

So my dad had to go to the hospital because he had an infection from the cancer. And what we thought was going to be maybe a day or two in the hospital turned into about a week and a half, which he was really unhappy about. He did not like being in the hospital, but we were lucky in that we got to meet Dr. Mindy.

[Dr. Mindy Shapiro]

My name is Mindy Shapiro and I am now, as of several months ago, a retired physician. And I. I am here because I had the pleasure and honor of taking care of your dad, Shoshana.

[Dr. Shoshana Ungerleiter]

So it was in the early days.

[Ed's Child (likely a daughter)]

Of his treatment that you met my dad.

[Sponsor/Advertiser Voice]

What do you remember about meeting him.

[Dr. Shoshana Ungerleiter]

For the first time?

[Dr. Mindy Shapiro]

He was like in full jogging gear in the hospital and he just was like a go getter, up and at him, wasn't going to be in bed. Even though he was hospitalized because he was having pain, he was so engaging. I mean, I felt like he was there to help me as opposed to. And I started to explain what palliative care was and he says, oh, you should meet Shashi. She's my daughter, she's a doctor. And he went on about you for a good long time.

[Ed's Child (likely a daughter)]

She kind of just reminded me of a relative. Like, like I'd known her my whole life. And she came in and she sat down on the bed, and she was really the only doctor, at least at that point, that was like a straight shooter, but really, really kind and also funny and really got to know my dad.

[Dr. Mindy Shapiro]

He was so vibrant, and he so liked living, yet the other half of him knew that his time was limited. And he really wanted to how he could be as vibrant as he was for as long as possible. That was what was really important to him. He didn't want to be in pain, and he would do just about anything he could to get himself healthy and strong. And he used the word strong more than healthy, because I think he had an understanding that his illness was really time limiting.

[Ed's Child (likely a daughter)]

He was a little bit of a jokester, but then if you got on his bad side, he would really not like you. He was a stubborn guy and wanted things how he wanted them. So she figured that out quickly and would come in and ask him if he wanted a treat for lunch or. Eating had become really, really hard because it was painful and. And things weren't tasting good. And so she really dialed into the fact that my dad loved lox and bagels and cookies and things that he probably wasn't supposed to eat because he now had diabetes from the pancreatic cancer. But she knew how to build rapport with him, and he really, really liked her, whereas he didn't. He didn't love all of his doctors.

[Dr. Shoshana Ungerleiter]

Dr. Mindy wasn't always a palliative care physician. She had a long career as a critical care specialist and pulmonologist. So she was used to treating patients who were really sick, and she was always trying to get to know her patients better.

[Dr. Mindy Shapiro]

My heart is in that place and was before there was a specialty of palliative care. Our procedure is listening, and our skill is in discussing and guiding. I think that's what makes us a specialty.

[Dr. Shoshana Ungerleiter]

Palliative care is a new field. It was first recognized as a subspecialty of medicine in the US in 2006.

[Dr. Mindy Shapiro]

Part of it is kind of like being a guide or minding the gap for patients who don't realize that they have options on this journey and help them decide what is the best path for them in this part of their lives.

[Dr. Shoshana Ungerleiter]

And how does palliative care differ from hospice?

[Dr. Mindy Shapiro]

All right, so hospice is strictly defined as care for patients who are thought to have a lifespan of six months or less. Palliative care is for anybody at any phase in their illness. It does not have to be an incurable illness. It's someone who faces the physical and emotional and societal trauma of having a serious illness that needs sort of an extra level of support for them and their families.

[Dr. Shoshana Ungerleiter]

In 2020, Dr. Mindy felt the need to offer her patients more autonomy in making life decisions in the face of illness. So she decided to retrain as a palliative care doctor. And that's how she met my dad. You did such a wonderful job of really getting to know him in such.

[Ed's Child (likely a daughter)]

A short amount of time.

[Dr. Shoshana Ungerleiter]

Was your relationship with him sort of compared to other patients unusual for you?

[Ed's Child (likely a daughter)]

Do you usually get to know patients like that?

[Dr. Mindy Shapiro]

Everybody is different, so I get to know everybody differently. But your dad and I were of the same era, the same background, ethnically appropriate, so we had a lot of commonalities. So it was very easy to personalize him because he was so special and in his individuality. He was, in a way, a teacher, a mentor for me, being so open and honest and, and clear about what his wishes were. He made it very, very easy as a professional to include everybody in his sphere in the decision making. But he also made it very clear that he was the decider.

[Ed's Child (likely a daughter)]

Yes.

[Dr. Mindy Shapiro]

Yeah. You know that ultimately he had autonomy and he was very good at integrating people with various skills to focus on a project. And he was the project.

[Dr. Shoshana Ungerleiter]

Palliative care takes a team based approach. It combines medical care, spiritual care, social work, nursing, and sometimes case management, and even health care at home, all under one umbrella.

[Dr. Mindy Shapiro]

What is not well integrated is how the team transitions from venue to venue, from hospital to home, to inpatient hospice to outpatient hospice to the emergency room, those kinds of things.

[Dr. Shoshana Ungerleiter]

So after he was released from the.

[Ed's Child (likely a daughter)]

Hospital, you still, I think, took care of him?

[Dr. Mindy Shapiro]

Well, I usually just took care of patients in the hospital. However, I felt that he couldn't get the kind of care that he needed from someone else. I felt like I was his person for that. And then I integrated with his primary care physician, who he also had, as not surprisingly, a magnificent relationship with. So we sort of co managed his outpatient care until it was became impractical to do that. And then we integrated an outpatient palliative care doctor.

[Ed's Child (likely a daughter)]

I'm so grateful that you felt like that. That continuity was important. I think it really was for him at that time. You made such a big difference.

[Dr. Mindy Shapiro]

I think it's important for everyone. And I think that the wonderful thing about being a palliat care doctor is you get to be creative. You have to be system savvy and you have to know what your patient needs and you have to be willing to Go the extra mile for that person because it's an intimate, trusting relationship that really shouldn't span just a place. People are in your life for a reason. A season or a lifetime for palliative care doctors, it's all of those things.

[Ed's Child (likely a daughter)]

It was incredibly helpful and made the biggest difference for us to have great support from palliative care. And it was not enough.

[Dr. Shoshana Ungerleiter]

You're listening to before we go. I'm Dr. Shoshana Ungerliter. We'll be right back.

[Ed's Child (likely a daughter)]

There were several points that my dad said. I just don't think this is working. And I just feel absolutely terrible. I've lost all this weight. I'm barely able to, you know, leave the house. What. What is all this for? And we really encouraged him to keep going that. Because there was hope. We. We should give it a shot. Looking back, I'm not sure that that's, you know, that that was the right thing, of course. But he, he wanted to push through. I think he wanted to stay alive for his grandchildren.

[Dr. Shoshana Ungerleiter]

But there were times when his commitment would waver.

[Family Member or Caregiver]

There was one weekend in particular you were in Australia. I think he had had a. He had an infection that was causing him to be delusional. And he was like, this is it. This is the end. I'm gonna die this weekend. I'm not going to the hospital for this procedure. Even though it was like a minor procedure, like he needed to get on IV antibiotics. And he just was like, this is it. It's the end of the road. And I was like, okay, dad, so Shoshana's in Australia. You can't die while she's gone. Can you get in the car and we'll just talk about this on the way to the hospital. And I had to like wrangle him into my car. And I was literally just like, I was treating him like my 8 year old son, who at the time I think was like six. And I was like, oh, yeah. Well, I have a snack for you.

[Child (possibly a grandchild)]

In the car, so we can totally.

[Family Member or Caregiver]

Talk about you deciding to die this weekend. But I do have some snacks, so just hop in the car.

[Child (possibly a grandchild)]

I'll bring your favorite pillow. Oh, dad, have you heard the new, you know, George Michael song that they found from the grave? I'll play it for you in my car with the snacks on our way.

[Family Member or Caregiver]

And then we can talk about you dying when we get there.

[Ed's Child (likely a daughter)]

And then after getting the antibiotics at the hospital, he sort of came to. And what happened?

[Family Member or Caregiver]

He was fine.

[Child (possibly a grandchild)]

Once he came to, it was just.

[Family Member or Caregiver]

Kind of like, oh, I didn't die.

[Child (possibly a grandchild)]

Oh, we should call that guy and.

[Family Member or Caregiver]

See if he wants to come stop by. Doesn't that one guy still work here?

[Child (possibly a grandchild)]

Let me see if I have his cell phone number.

[Family Member or Caregiver]

He. He brought me a newspaper. The last time we were in this hospital, like, he was, like, dialing his concierge service and trying to be a diva.

[Dr. Shoshana Ungerleiter]

But the biggest struggle often came when it was time for my dad to eat. Weight loss is a common struggle for patients with pancreatic cancer. Because of where the pancreas lies in the body, eating can cause pain. Pancreatic enzymes usually help break down food, so that can become an issue as well. On top of that, cancer can dull hunger signals and change how food tastes, sometimes in unexpectedly funny ways.

[Child (possibly a grandchild)]

We have a family announcement to make. Somebody has played a very mean trick on Pappy.

[Dr. Shoshana Ungerleiter]

This is a video that Arielle made.

[Child (possibly a grandchild)]

And there was this delicious looking cupcake with white vanilla frosting. And then dad ate it. How did it taste? Bizarre.

[Family Member or Close Friend]

Bizarre.

[Child (possibly a grandchild)]

Totally bizarre.

[Dr. Shoshana Ungerleiter]

This time, it wasn't cancer that was causing my dad's lack of appetite.

[Child (possibly a grandchild)]

So we figured out what was wrong. Joanna just came into the kitchen with the announcement.

[Family Member or Caregiver]

It's a doggy cupcake.

[Child (possibly a grandchild)]

Well, I'm sure it's delicious for the dogs.

[Dr. Shoshana Ungerleiter]

But even when we weren't accidentally feeding my dad a treat made for dogs, it was tough.

[Family Member or Close Friend]

It was really disconcerting to me how hard it was to get your dad to eat. And it felt like all day, every day that, like, the main thing we did was try to feed him and get him to eat. I just started waving the flag because he started losing so much weight.

[Dr. Shoshana Ungerleiter]

We tried a lot of different remedies, including cannabis. Cannabis can be helpful in restoring appetite in patients with cancer. And after talking it over, my dad agreed to give gummies a try.

[Family Member or Close Friend]

We gave him, like, one gummy nothing, two gummies nothing, four gummies nothing.

[Dr. Shoshana Ungerleiter]

The consultant we spoke to suggested that we give my dad a tincture instead.

[Family Member or Close Friend]

And we're like, okay, well, we'll try that. And we're getting off the phone call, and the person's like, wait, wait, wait. There's something really important I need to tell you. You have to start again at the lowest dose. Don't go back to where you were, or this guy's gonna be stoned to the bejesus. Which it never. That didn't work out either. He'd humored us with the gummies. It hadn't worked. He doesn't want to try it, but his lack of eating was just something that Was really clear to me that.

[Social Worker or Mental Health Professional]

He was depressed and common with pancreatic cancer. So that was really, really complicated. But I also feel like maybe his doctors weren't taking that as seriously as they should have.

[Family Member or Close Friend]

Absolutely. He was withdrawing into himself. He didn't want to do anything. He didn't want to see anyone. And I remember when we raised it to his doctors, they said, oh, well, of course he's depressed. He has cancer.

[Social Worker or Mental Health Professional]

A social worker who I spoke to on the phone put this in an interesting light for me, and that is that as a demographic, white men who are of older age, very generally speaking. Right.

[Family Member or Close Friend]

Especially those with.

[Social Worker or Mental Health Professional]

With money.

[Family Member or Close Friend]

Yep.

[Social Worker or Mental Health Professional]

And influence and power have not had to face significant obstacles in their life. Facing a terminal illness is huge adversity, and you really need resilience and grit. And those things don't just come out of nowhere. And if you've never practiced that, it's really hard. And so that was really helpful framing for me to kind of understand where he was maybe coming from.

[Dr. Shoshana Ungerleiter]

We all understood that depression was common for patients like my dad facing a terminal illness. But Ed was still really frustrated that there wasn't more we could do to help.

[Family Member or Close Friend]

I just remember thinking, like, well, okay, yes, but he's still depressed. We have to help him. We have to help him. And there was just a lot of reluctance to address the challenges that he was going through. And I think it was partially like a guy thing where it's, you know, there's a stigma of, like, well, you just gotta buckle up and carry through. Kept trying to wave this flag of, this isn't just like, he's in a bummer of a situation, so he's bummed out, something's wrong, and we need to do something about it. And it felt like that was a message that we were never really able to get through. And that your dad kind of went from beginning to end in a really withdrawn state.

[Dr. Shoshana Ungerleiter]

I asked Dr. Mindy about all of this. So as my dad's illness progressed, he really struggled more and more with facing his mortality.

[Ed's Child (likely a daughter)]

And when it comes to mental health care in and around the end of.

[Dr. Shoshana Ungerleiter]

Life or facing a serious illness, what.

[Ed's Child (likely a daughter)]

Do we get right and what are we getting wrong? As a system?

[Dr. Mindy Shapiro]

Yeah. I think that as a system, you know, we understand that there is anxiety and there's probably depression, and there are side effects from medications, and there are physical and mental effects of the disease process itself. And I think that we try very, very, very hard to find a pill or a treatment. And because modern medicine is the way it is take this and see how you are in two weeks. Well, that's just not going to cut it.

[Dr. Shoshana Ungerleiter]

You know, treating despair and dread related to a terminal illness is not always as easy as taking a pill. And we really struggled to find solutions for my dad.

[Ed's Child (likely a daughter)]

My dad was a sports psychologist and was somebody that was an expert on mental training for peak performance. And so we. We tried, sometimes in a joking way and sometimes in a serious way, to get him to take his own advice and try to focus on the chemo treatments, going straight to the cancer and fighting it, and the positive imagery and things that he would tell me when I was a kid and starting to play basketball and tennis about. Imagine the ball just going into the basket.

[Family Member or Close Friend]

I actually read him.

[Social Worker or Mental Health Professional]

That's right.

[Family Member or Close Friend]

A section of his book, a section of his own book. I came in one day, I printed it out, and I was like, you know, Esteban. I called him Esteban. I'm like, esteban. I'm not the kind of guy to give advice, and I'm not going to try to give you advice, but I read this thing that I think you may find really meaningful.

[Narrator or Reader of Dorothy Harris's Section]

My friend and colleague, the late Dorothy Harris, PhD.

[Dr. Shoshana Ungerleiter]

It was a section from Mental Training for Peak Performance, a book my dad wrote back in 1996. This chapter was about my dad's friend and colleague, Dorothy Harris, who'd used positive imagery both in her work with athletes and in her personal life.

[Narrator or Reader of Dorothy Harris's Section]

During her career, she wrote many articles and books and spoke about the relationship of self talk to attitudes and behavior right up until a few days before her death from pancreatic cancer. After her initial cancer diagnosis, she challenged her doctors by declaring that she would outlive their medical predictions by more than a year. For years, she had practiced imagery, visualization and positive affirmation strategies, and she believed this would improve her health. She won the bet and outlived the doctor's prognosis by two years.

[Family Member or Close Friend]

And I read it to him and he was like, wow, that's really good. And I'm like, you wrote that?

[Dr. Shoshana Ungerleiter]

But for whatever reason, my dad wasn't able to do the very thing he'd encouraged others to do his entire life.

[Family Member or Close Friend]

I think from what he'd seen, he'd seen cancer just take people away, and he was riding the train.

[Ed's Child (likely a daughter)]

I often found myself having a really hard time just knowing what to say, knowing what to do, because this was a person that I really didn't know. He'd become somebody else.

[Dr. Shoshana Ungerleiter]

All of this was really, really hard. But there were definitely moments that brought us hope.

[Ed's Child (likely a daughter)]

So after about six months of chemotherapy, the main tumor was shrinking. Things were looking a little bit better. And so it was at that time when he actually did start on the PARP inhibitor, the targeted therapy that he could take as a pill. And he also started immunotherapy, which is a newer treatment for some cancers that you get as an infusion, but it's only about every six weeks, so it's less. Less intense, and usually fewer side effects than chemo. So he started on that, and we were all so, so hopeful. I think he was glad to not have to drive to chemo and sit in a chair hooked up to toxic medicine for hours and hours on end.

[Dr. Shoshana Ungerleiter]

And all the nausea and the sickness.

[Family Member or Caregiver]

That came with seemed like it was working right. He had some really great days, and he wanted to go to Hawaii. And we started planning a trip potentially. And it seemed like there could be some better days ahead, which was very optimistic. And then kind of soon thereafter, things started to unravel pretty quickly.

[Ed's Child (likely a daughter)]

He wasn't getting better. He was just getting weaker. And scans showed that the tumor had increased in size and then spread, spread to his spine and maybe his lungs.

[Dr. Shoshana Ungerleiter]

And he was just feeling worse and worse.

[Ed's Child (likely a daughter)]

Pain was a big issue because of where the main tumor was in his belly. I mean, he said to us, listen, this is it. I'm tired. And he said he made peace with this idea that it was okay to.

[Social Worker or Mental Health Professional]

Go talk about my dad's decision to start hospice. Was it even a question at that point?

[Family Member or Close Friend]

No, I don't think so. He was not happy, and it didn't seem like there was a path for him to get better.

[Dr. Shoshana Ungerleiter]

And my dad was really clear on what he wanted to do.

[Ed's Child (likely a daughter)]

Stop treatment, stop the insulin and the 30 other medications that he was taking every single day and just focus on his comfort.

[Family Member or Close Friend]

He knew what it meant, and in many ways, it felt like a relief, I think, to him.

[Ed's Child (likely a daughter)]

We had evidence that showed, right, that it wasn't working anymore. There was no reason to keep going. We'd pushed him to keep going throughout those many months because there was this hope out there.

[Dr. Shoshana Ungerleiter]

There was this possibility that he could.

[Ed's Child (likely a daughter)]

Get better and have many more months or years of life. And after we realized the medicines weren't working, then that was gone.

[Dr. Shoshana Ungerleiter]

We'd all been so hopeful, with good reason, that the targeted treatment with the PARP inhibitor would work, and it just didn't. A lot of what we had been grappling with for months was, how do you know when it's time to change course?

[Ed's Child (likely a daughter)]

We all agreed that he'd given it a really, really good shot and that it was just time.

[Family Member or Caregiver]

I kind of felt at peace with that, that, you know, he had done his best. I think I would have handled it differently, but, like, obviously you don't know if you're not in that moment. He had done his best, and we were gonna pivot to pain management and just, you know, focusing on positive.

[Ed's Child (likely a daughter)]

That made sense to everybody, that he'd given it a shot. That's all we wanted was for him to try. And he did.

[Dr. Shoshana Ungerleiter]

And so my dad made the transition.

[Ed's Child (likely a daughter)]

To hospice care, and I think it.

[Family Member or Caregiver]

Was helpful for everybody to just get on the same page. That's like, nope, we're not going to call an ambulance. Nope, we're not going to poke and prod more. It was almost like a relief. Eat when you want to eat, Drink when you want to drink. That it wasn't this battle constantly of trying to get calories in him. And then we just got to play music and the kids would come and play. We would cannonball his swimming pool and just have fun.

[Dr. Shoshana Ungerleiter]

Those final days and weeks with my dad were really meaningful. Sometimes they were even funny. Looking back, I'm reminded that even in the hardest times, there can be joy.

[Family Member or Close Friend]

The night before he died, feeding him ice cream. He's like, joking with me for not feeding him the ice cream fast enough. He's like, eddie, come on, stop talking to Shosh. Give me more ice cream.

[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.

[Ed's Child (likely a daughter)]

If you like what you've heard, please.

[Dr. Shoshana Ungerleiter]

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.