Quality of Life

COLD OPEN

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 just have to be honest. Taking care of someone who is seriously ill can be really, really hard.

Shoshana: 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 in his 70s. And, uh, 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.

Ed: 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.

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 first he would need to undergo traditional IV chemotherapy. And that was really hard.

Ed: 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.

My dad went along with it. He bravely showed up to chemo every couple weeks for months and months. But he wasn’t always the easiest patient.

Ariel: 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. Like 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.

Ed: 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.

Shoshana: Yeah.

Ed: 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.

Shoshana: Did it worry you at all?

Ed: Oh yeah, absolutely. I mean, we talk a lot, you and I, talk a lot about, like, 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 we were joking, we were like, you know, we could actually use a little fight from your dad.

Shoshana: Yeah.

Shoshana: 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. Um yeah. We just – we encouraged him to keep going. I, I'm not sure what we would've done had we known, you know?

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My family was really lucky. Because I’m a physician and because of the work I’ve done with End Well, 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 on to help make things easier.

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

I’m Dr. Shoshana Ungerleider and this is Before We Go. Episode 7: Quality of Life.

ACT II

I first learned about palliative care when I was a medical student. But I wasn’t in a lecture or reading a textbook.

Shoshana: So there was this, I think, quarter 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. A nd 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 what that was at the time.

Shoshana: 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.

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.

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

Shoshana: So it was in the early days of his treatment that you met my dad. What do you remember about meeting him for the first time?

Dr. Mindy: He was like in full jogging gear in the hospital and he just was like a go getter, up and at ‘em, 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.

Shoshana: She kind of just reminded me of a relative, 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: 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 discuss 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.

Shoshana: 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. And so she figured that out quickly and would come in and ask him if he wanted a, a treat for lunch or – eating was a, had become really, really hard because it was painful 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. 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: 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.

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

Dr. Mindy: 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.

Shoshana: And how does palliative care differ from hospice?

Dr. Mindy: Alright, 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.

In 2020, Dr. Mindy felt the need to offer 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.

Shoshana: You did such a wonderful job of really getting to know him in such a short amount of time. Was your relationship with him sort of compared to other patients unusual for you? (Yes) Do you, do you usually get to know patients like that?

Dr. Mindy: 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. Um, 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. (laughs)

Palliative care takes a team approach. So it combines medical care, spiritual care, social work, nursing, sometimes case management and even health care at home – ALL under 1 umbrella.

Dr. Mindy: 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.

Shoshana: So after he was released from the hospital, you still, I think, took care of him.

Dr. Mindy: Well, I unusually just took care of people in the hospital, but 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 I integrated with his primary care physician, who he also had, uh, 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.

Shoshana: 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: I think it's important for everyone and, and I think that the wonderful thing about being a palliative care doctor is you get to be creative.

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Dr. Mindy: 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.

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

You’re listening to Before We Go. I’m Dr. Shoshana Ungerleider. We’ll be right back.

ACT III

Shoshana: 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. Um, I think he wanted to stay alive for his grandchildren.

But there were times when his commitment would waver.

Ariel: 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 talk about this on the way to the hospital?

Ariel: And I had to like wrangle him into my car and I was literally just like I was treating him like my eight 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 in the car. We can totally talk about you deciding to die this weekend, but I do have some snacks. So just hop in the car. 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. And then we can talk about you dying when we get there.

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

Ariel: He was fine. Once he came to, it was just kind of like, oh, I didn't die. Oh, we should call that guy and see if he wants to come stop by. Doesn't that one guy still work here? Let me see if I have his cell phone number. 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.

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 becomes an issue as well. On top of that, cancer can dull hunger signals and change how food tastes—sometimes in unexpectedly funny ways.

Ariel on Video: We have a family announcement to make.

This is a video that Ariel made.

Ariel on Video: Somebody has played a very mean trick on Papi. There was this delicious looking cupcake with white vanilla frosting and then dad ate it. How did it taste? (Steve: Bizarre. Totally bizarre.)

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

Ariel on Video: So we figured out what was wrong. (Joanna: It's a doggie cupcake.) Well, I'm sure it's delicious for the dogs.

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

Ed: 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. And to me, I just started waving the flag because he was losing so much weight.

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.

Ed: We gave him like one gummy, nothing. Two gummies. Nothing. Four gummies, nothing.

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

Ed: 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 going to be stoned to the bejesus! (laughs) 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 he was depressed.

Shoshana: And common with pancreatic cancer, so it was real, that was really, really complicated, but I also feel like maybe his doctors weren't taking that as seriously as they should have.

Ed: 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.

Shoshana: 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, I'm very generally speaking, right?

Ed: Especially those with…

Shoshana: With money. (Yep.) Um, 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.

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.

Ed: I just remember thinking like, well, okay, yes, but he's still depressed. We have to – 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 got to buckle up and carry through. And I kept trying to wave this flag of, this isn't just like a – 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, you know, kind of went from beginning to end in a really, you know, withdrawn state.

I asked Dr. Mindy about all of this.

Shoshana: So as my dad's illness progressed, he really struggled more and more with facing his mortality. And when it comes to mental health care in and around the end of life or facing a serious illness, what do we get right? And what are we getting wrong as a system?

Dr. Mindy: Yeah. I think that as a system, you know, we understand that there is anxiety and there's probably depression and there are 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 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 gonna cut it, you know?

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

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Shoshana: 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.

Ed: I actually read him…

Shoshana: That's right.

Ed: …a section of his book.

Shoshana: …of his own book.

Ed: 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.

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 had used positive imagery

both in her work with athletes and in her personal life.

Ed Reading: 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.

Ed: And I read it to him and he was like, wow, that's really good. And I'm like…you wrote that. (laughs)

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

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

Shoshana: 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. Um, he'd become somebody else.

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

Shoshana: 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 and all the nausea and the sickness that came with it.

Ariel: It seemed like it was working, right? He – 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.

LONG PAUSE NEEDED HERE!!!

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

Shoshana: Talk about my dad's decision to start hospice. Was it even a question at that point?

Ed: No. I don't think so. He was – he was not happy. And it didn't seem there was a path for him to get better.

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

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

Ed: He knew what it meant, and many ways it felt like a relief, I think, to him!

Shoshana: 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. There was this possibility that he could get better and have many more months or years of life. And after we realized the medicines weren't working, then that was gone.

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

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

Ariel: 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.

Shoshana: 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.

And so my dad made the transition to hospice care.

Ariel: I think it 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 that we're just going to work on comfort care.

Ariel: So, I think it, 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 and play music and the kids would come and we would cannonball his swimming pool and just have fun.

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.

Ed: 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 show. Give me more ice cream.

That’s next time on Before We Go.