On today’s podcast, we interview Steve Pantilat about his new book “Life After the Diagnosis: Expert Advice on Living Well with Serious Illness for Patients and Caregivers.” Steve is a Professor of Medicine, the Department of Medicine at UC San Francisco, Kates-Burnard and Hellman Distinguished Professor in Palliative Care, and Founding Director, the UCSF Palliative Care Program.
In his book, Steve writes to patients and family members coping with serious illnesses about the difficult decisions they face in a convoluted medical system, giving them practical advice on a wide range of common concerns. We talk with Steve about how he came up with the idea of the book, his views on living well and what a “good death is”, the role that hope plays in decision making, and the language that we use in medicine that can easily be misunderstood.
Steve can also be heard during his recent appearance at the Commonwealth Club of California (click here for the link) on on Forum with Michael Krasny on August 2, 10-11am PT.
Enjoy! Transcript is below.
Eric Widera, @ewidera
Eric: Welcome to The GeriPal Podcast, this is Eric Widera.
Alex: This is Alex Smith.
Eric: And Alex, who is in the office with us today?
Alex: We have a special guest today, we have doctor Steve Pantilat, who is the head of Paliative Care at UCSF, Professor of Medicine, Endowed Chair, he has a new book out called Life After The Diagnosis. This is a terrific book, Eric and I read it recently, we’re excited to talk to him about it. Welcome to The GeriPal Podcast.
Steve: Thanks a lot. Really a pleasure to be here.
Eric: But before we go into the book, we always ask our guests, is there a song that you want Alex to sing?
Steve: “Running on Empty”, Jackson Browne.
Alex: Jackson Browne, you’re gonna join!
Eric: We are excited about this.
Alex: One more round and here we go.
Alex and Eric: Alex
Alex: Great choice of song! We need a little Jackson Browne, I think that’s the first time we’ve done Jackson Browne.
Eric: I think so too!
Alex: So, Steve, your book, Life After The Diagnosis, published in February, and I heard it was on the anniversary of your father’s death?
Steve: That’s exactly right, yeah. Twenty-six years to the day, it turned out. Yeah.
Alex: So what prompted you to write a book? That seems like a big undertaking.
Steve: It is a big undertaking. People told me it was a labor of love, which is exactly right. Like you probably do, I get a lot of calls from friends, family, colleagues, you know, “My mom is sick, my grandmother, my aunt, what should I do?”
And these are people who are smart, they have access to Google, they have access to books, and journals, and so on. And yet, I realize they don’t know what to do.
And I had the experience of realizing you could be helpful to people even if you’re not their doctor, even if you’re not taking care of them, and even if you don’t know them well. There’s a lot that we know in Palliative Care that can be really helpful to people who are sick, things you can’t Google your way through.
And I realized that was helpful and I realized … And then people would ask me, “So, this is great, so helpful, what book should I read that really helps me with this?” And I said, you know, there isn’t one. So people said you should buy it – I mean, you should write it.
Alex: You should write it! Yeah.
Steve: So I said alright.
Alex: So what was the process like, writing this book?
Steve: I wrote the outline of it about ten years ago, this idea of like what should be in a book to help guide people with serious illness. But then it sat around for about six years or so and then … Writing it was really developing an outline. I did a lot of dictation and then transcription and I worked with an editor all the way through, where I would dictate and transcribe and edit and then we did a back and forth on it. And then I developed a proposal, it was about sixty-five pages, three full chapters. Then I had to find an agent, that took about nine months to find an agent. They had great ideas for books they’d like me to write but-
Alex: But not the idea of the book I wanted to write.
Steve: I had to find the right agent. And then the agent said, “Okay, now revise your proposal,” so I did that. And then he said, “Okay, I’ll get back to you.” And that took about six months or so to find a publisher. Once it was a publisher, it was like, “Hurry up and write the book.” Then it’s like, “In seven months, we want the book done.” So then it was really like, writing, writing. Luckily, I had a detailed outline for every chapter, and then it was writing, writing, and then there was a bunch of back and forth after that before it’s ready to be published.
Eric: And I remember from your book, there was a part of one of the chapters, you talked about if you had a poor prognosis or a life limiting prognosis, the things that you would and would not do. The thing that stands out for what you wouldn’t ever want to do again was floss. So I learned something about you, Steve.
Alex: But I think on the list was write another book! Is that right?
Steve: Yeah, it is, yeah.
Alex: I would imagine going through this process, I would never want to write a book again.
Steve: It’s funny, my agent said, “Usually within your book, there’s the next book is buried within this book.” And so I have some ideas about what I’d like to write about and although it’s a difficult process, it’s been really rewarding and I thought I’d like to do it. And I would indeed stop flossing. I hate it.
Alex: So one of the themes that you address head on, upfront in the book, is the idea that this is a book that Palliative Care and this book are about living well and not dying well. Can you say more about that?
Steve: Yeah. Which really occurred to me in writing the book but also in caring for patients is that our goal, my goal … Our goal as a field is really to help people live well. And there’s a lot of discussion about a good death and certainly, we want people to be peaceful and comfortable and dignified at the very end of life but that fundamentally, I see our job as to help people live well. And the challenge is, how do we live well?
It’s really hard to make these decisions, decisions about chemotherapy, about whether you wanna be in a clinical trial, do you want a LVAD, do you want more procedures, do you want to be in the hospital, do you want a feeding tube, do you want to start dialysis? These are very difficult decisions about how we live well and what’s important to us. And that’s where we really help people, is to think about how they live their lives well.
Hopefully, that will lead to an end of life experience that is in fact more peaceful and comfortable. But that’s not our goal, fundamentally.
Alex: There’s a tension, I think, within the field of Palliative Care, and even a larger community that includes folks who are interested in end of life care, who are interested in … People living with serious illness, around this specific issue, should the focus be on the death aspect, the dying well, the let’s celebrate death, let’s acknowledge it, let’s …
Eric: Redesign it?
Alex: Redesign it, make it a natural part of our existence. And then there are other folks who say, as you do in the book, you know what? It’s natural, it’s a normal evolutionary urge to fear death, right?
Steve: That’s right, that’s right. What I find is the discussion of end of life, to me, is most helpful because it helps us think about how we wanna live our life. So the fact that we are mortal, makes today urgent. And if contemplating the end and how we want to die helps us live today better, I find that to be really helpful and to not be afraid of that and to really face it and recognize our mortality. I find that conversation really helpful.
The fact of how I wanna die, do I wanna be on a beach, and what music do I want? My experience is it doesn’t turn out that way. Like it’s a lot different than that and it doesn’t pan out that way and the focus being on the very end doesn’t actually help you decide whether you wanna start dialysis or not. But that’s the issue you have to deal with.
I’ve also been impressed that the people who most want to talk about death are healthy. And the people who are sick, that I take care of, they want to talk about living well. And so, in a book that I wrote for people with serious illness, it’s about how do you live well.
And I guess the last thing I’ll say is that, we talk about a good death but I don’t see death as good. I’ve seen it only as being sad and filled with grief and loss, and nothing we do seems to make it good. And the tragedy … I recently took care of a forty-two-year-old woman with an eight-year-old child in the hospital. She died in the hospital. People would say, “Oh, that’s a bad death,” but you know, what was bad is that she died. And if she had died at home, it wouldn’t change the tragedy and the sadness and the grief and loss associated with her death.
She was comfortable, her family was with her. It was sad. And I don’t see that being in the ICU would’ve made it a lot more tragic or that being home would’ve made it a lot less tragic. It was a really sad, grief filled experience for everyone. It’s important to just acknowledge that piece of it.
And I also don’t think we’re gonna make death good enough that people sign up for it.
Alex: This builds into another major theme that you write about which is the role of hope and that hope changes. If we’re not hoping for a good death, what are we hoping for? Could you say more about that?
Steve: Yeah. There’s this idea that somehow if we talk about what’s really happening, like how serious your prognosis is, or the fact that you have in fact a life limiting illness, that somehow that’s gonna take away hope and so, let’s not talk about it, we need to leave people with hope.
But I worry that what that leaves people with is false hope. And that fundamentally, false hope is no hope. And if we talk about hope, we can really promote it and we can encourage it and to recognize that people have hope, even when we take care of people who are days away from the end of life, who are actively dying. They still have hope for things that are meaningful to them. And by talking about it, we can really encourage people to have hope, and to build on and to recognize, yeah, there’s hope for cure, sure. But there’s hope for a lot of other things that can coexist within the hope for cure, or alongside that hope, and we can encourage that.
Eric: One of the stories that stood out to me was also in the false hope section of your book. It was Sergei. It was a eighty-year-old man who fought in Stalingrad, is that right?
Steve: Yeah, that’s right, that’s right.
Eric: And his wife had dementia and his hope was that she would get better?
Steve: She would get better, yeah. That her thinking would get better, that she would get more functional, and he just never wanna give up.
Eric: What’s our role as clinicians? When we’re faced with this, do we call it false hope?
Steve: That I would say is false hope, we know that dementia does not reverse. But what really impressed me with Sergei’s story is when he explained being at Stalingrad and all these people who died and he ate frozen potato peels and he never gave up and he had hope and that’s why he survived. And I realize that there was nothing I could say that would fundamentally change his hope in his wife getting better and I realize my role at that point was just to support him in that hope. And I also realize that his chance at Stalingrad was better than his wife’s chance of getting better.
But, you know, there’s a time to push and there’s a time to accept and support and that was a time to accept and support.
Alex: And I like the statement, “Realistic prognosis focuses hope. They give patients reliable and realistic information they can use to make decisions.” That was great. Focuses hope. Realistic prognosis focuses hope. Could you say more about the role of prognosis and prognosis communication?
Steve: Well, I’m talking to two experts on prognosis, I actually talk about the ePrognosis website-
Alex and Eric: We saw that!
Steve: -which I really like.
Alex: Thank you for that.
Eric: Alex came into my room and said, “He wrote about ePrognosis!”
Steve: It’s a great website! It’s really, really helpful to people and really makes it very practical and usable to think about and talk about prognosis. It’s fundamental to what we do is to talk about prognosis, is for people to know what’s going to happen in the future and what is realistic in the time that they have left. And it’s hard to imagine you could make good decisions without that information about what you wanna do and how you wanna live your life and whether you accept certain therapies or what you choose to do in your life.
Steve: Floss. Exactly! Exactly. It depends entirely on, “how long do I have?” I thought … When I read the book, When Breath Becomes Air, which I think is really a tremendous book and very moving, very powerful; one thing that really struck me is how Paul Kalanithi speaks to this idea about what he would do based on his prognosis and that to really make a difference in science would require twenty years and he no longer had that. But if he had two years, he’d finish his residency. And if he had a year, there was a book he wanted to write. And how he made those decisions very explicit and then decided to have a child and this idea of this focus on legacy and how the prognosis really impacted the decisions he made and how he spent his time. That’s true for all of us, about what it is we wanna do. And if we don’t have that information, we’re lost.
Eric: But didn’t his oncologist refuse to give him a prognosis?
Alex: She did!
Alex: He said, “What’s my prognosis? I wanna know my prognosis.” And she said, “Absolutely not.”
Steve: I talk about that in my book as well. Paul and Lucy had plenty of access to prognostic information and I’m pretty sure they figured it out. But what I tell … Doctors say that a lot and I thought that was a very interesting … Not what I suggest in the book. And I tell patients, look, your doctor will say, “I don’t have a crystal ball, who really knows, prediction is hard.” Yeah, all true, but you can say, “Give me a range. I mean, are we talking days to weeks, weeks to months, months to years?” Your doctor should be able to give you information like that.
Eric: Yeah, I’m always fascinated, there’s so much uncertainty in medicine. Everything that we do, there is uncertainty. From the diagnosis to treatment plans, but nobody says, “Oh, you know, we don’t have a crystal ball whether or not this Zosyn’s gonna work for your pneumonia.”
Steve: Right? Or whether you have pneumonia at all, right? Could be pneumonia or could be something else. Right, we’re very uncomfortable and I get it. It’s not a fun conversation to give someone a limited prognosis. Like how fun is that? But we’re not here to have fun all the time, this is serious business that we’re involved in.
Alex: Yeah, yeah. Another major theme that comes out in your book is this balance between quality of life and quantity of life. Could you talk a bit more about that?
Steve: In some ways, this is maybe the most important point is that the focus and the goal is really to have good quality of life and to have the best possible quality of life. And I what I tell people at the bedside is, “My goal is to help you live as well as possible for as long as possible. That’s my goal.”
People … You know, their eyes light up. That sounds good to me. But we often give people this false choice, we say, “Do you want quantity of life or quality of life?” And it’s somehow, if you want quantity of life, you have to accept all the possible interventions to attack your illness or to treat your illness. Every chemotherapy regimen, every procedure, and so on.
And what we know now is that, in fact, there comes a time when some of those things not only don’t help you live longer but may actually ruin your quality of life. Chemotherapy in the last six months of life, for example.
And that somehow if you want quality of life, it means you’re not gonna live quite as long. And what we know from Palliative Care, from the research, from the literature in our field, is that you can get both. And Palliative Care helps you live better and at least as long, maybe longer, but certainly no shorter, and you can live well and long. And part of my book, the point is to really get people to engage with and ask for and demand Palliative Care to live well and to live long.
Alex: I think there’s a nice story about your grandmother and living long and living well. If you wanna read that for our listeners?
Steve: I’d love to, thanks.
“My Safta used to sign birthday cards with the wish that you should live to a hundred and twenty. Moses lived a hundred and twenty years. A traditional birthday wish is that you should have a long life, like Moses, the greatest teacher and leader of the Jewish people. But as she got older, my grandmother changed it a bit. In Hebrew, she switched just one letter, and the change in meaning was profound. Rather than saying, ‘Live to one hundred and twenty,’ she wrote, ‘Live to one hundred like twenty. Live long and live well.’
My Safta understood that a good life is even more important than a long life. She lived that saying and declined chemotherapy when she was diagnosed with lung cancer at age ninety-three. Not all of us will live that long but we can all live the essence of that saying by living well.”
Alex: And I would point out – this is important to know – that the book is filled with poignant stories that illustrate key points from your personal life and from all of the many patients that you’ve cared for. And that really adds a richness and brings it home in sharp focus for readers out there.
Eric: I think there’s a lot of important points for providers who do this too. You know, one section that resonated with me that I didn’t even think of for some of those words, is that the phrases that we use as physicians and clinicians, including, as simple as something as being positive, like, “The blood culture was positive.” To me, that makes sense! “Oh yeah, the blood culture is positive, we gotta do this workup.” But you write it also, in the general public, positive can mean a good thing. Like, “Hey! The blood culture was positive!”
Steve: Right. Yeah. This really struck me, a patient I took care of very early in my career, during the early days of the AIDS epidemic, said, “Why do they say it’s HIV positive? It’s not positive. It’s terrible.” I thought, “You’re right. You’re exactly right.” If the lymph nodes are positive, if the margins are positive, it’s all bad news. And yet, if you were to listen to it, you would think it was somehow good.
Like progress. Like progressive illness, your illness has progressed. “Oh, that’s great!” No, that’s terrible. So I now think about this when I talk with my patients and I say, “Your heart failure is worse,” rather than saying, your heart failure has progressed, or the cancer has progressed. Your cancer is worse because that’s clear.
Eric: It’s so hard, I remember one time I was talking to somebody, things were going great, we were gonna move him from the TCU to the ward, The Red General Ward, I said, “So, we’re gonna move you today to the floor,” and they were shocked!
Like, “You’re gonna move him to the floor? What are you doing?”
Steve: Yeah. There are all these words that we use that are really … this jargon that we use that’s really crazy.
Alex: What was the other one? Ambulate?
Steve: Ambulate, right! So we know what that means, right? Ambulate, I mean if you think about it, it is a word that … It’s not quite walk, right? Ambulate just means sort of get across the room somehow and there’s many ways to ambulate. You know, get out of bed and move around.
So we understand that but I always wonder what if family would think. You know, “We’re gonna ambulate your mom three times today.” I just have no idea what they think, is she gonna get an ambulance, is she gonna… like, who knows? And you realize that these shortcuts that we need in medicine to communicate effectively can really get in the way of talking with our patients.
Alex: On a related note, one of the key points you make here is about the use and abuse of the word dignity and how people from all sides of the spectrum, of many issues seem to claim that word for their own. Could you say a little more about the word dignity?
Steve: Dignity is one of those very loaded words that’s in fact very personal. What you think of is your personal sense of dignity. And we use dignity, really, as you say, on many sides of the issue. So I think that where I first really noticed it was when people were talking about aiding dying. And people say, “Oh, the proponents of aiding dying say we have to respect the dignity of every individual to make that choice for themselves about the manner and timing of their death.” So it’s all about dignity.
But people who are against it say, “This violates our sense of human dignity. For people to end their lives, no matter what. And we should take care of them because human beings have this innate sense of dignity that would be violated by ending their life sooner.”
And so you see how it goes both ways. And I’ve heard people in the ICU talking with family, saying, “We really wanna respect your loved one’s dignity.” Well what they mean is, we wanna withdraw life sustaining intervention because we think that what we’re doing now is somehow violating their dignity and the family says, “Well, we want to protect their dignity by keeping them alive.” And so we often use this word as a code for certain things. Like, respect your dignity by withdrawing interventions and what we should … If we’re gonna use that word, we really need to embed it in what the patient and family think of as dignity and their interpretation of dignity and try to support that idea, not our own.
Alex: So, Steve, another major point in the book that you emphasize is strong recommendation. That for people who are living with serious illness, that they forgo CPR in the event … If they have a cardiac arrest and are dead. And in fact, I like these words that you use, “If despite CPR, you die, your final moments will have been spent at the center of a tornado and while a team works on your body, your family will be watching the horror or be banished from the room. In either case, they won’t be with you, at your side, holding your hand.” And I thought that was a very strong recommendation and an important recommendation that you make here. I wonder if you could say more about that.
Steve: I think there’s a way in which people with serious illness think, “Why not? Why not just try it?” And the evidence really suggests that when your illness is very advanced, to the point that you die of it, CPR isn’t really gonna help you. It’s not gonna help you at all and you’re gonna end up sicker. I think there’s a way that people think it’s like reset the computer. Like, “Eh, it’s not working, let me just reset it, now it works better than before.” But we all know that even if you survive CPR, you’re gonna be worse off than you were and there are implications, maybe not for you, I think this idea that somehow it’s suffering for the patient, I think is not right. We do CPR generally on people who have died. And so I don’t see that there’s a lot of added suffering to the person who’s died but there is this impact on their loved ones who might be at the bedside. And we have to remember what their experience is as well.
CPR is … It can be violent in its way. The chest compressions and the shocks and so on can be very violent and very distressing and it’s … Why would that be the memory that you want to leave behind? And yet, we have to recognize that people may see it in the context of lots of other care and that somehow being DNR and sort of saying, “I don’t want CPR,” may be saying a lot more than that and we have to be careful to remember that all we’re saying is, “When you die, when your heart stops and you stop breathing, we will not try to revive you because it won’t work. We’ll let you die peacefully.” But that has no bearing on all the other care that we will continue to provide. And we have to emphasize what we’ll continue in the meantime and all the care we will provide to make sure people are comfortable and well cared for so that we don’t see this decision about CPR at the very end as somehow implicating something more than it is.
Eric: That reminds me of another part of your book where you said something very poignant, “Treatments including surgery, chemotherapy, dialysis, LVAD, and others are not imbued with moral character.” Can you tell me a little about that, what that means?
Steve: Yeah. There is a way that we talk to each other and talk with our patients about these interventions like dialysis as being good or bad. You know, dialysis would be … I think dialysis would be really bad for this patient or, dialysis is not indicated, or chemotherapy would be terrible.
Eric: It’s terrible, it’s evil!
Steve: Right, it would be just a terrible thing to do. And at the end of the day, it’s just an intervention. It has no moral quality one way or the other. Dialysis it just is this thing and for some people, it’s incredible, it’s lifesaving, it allows them to have a full and rich life, and for other people, it’s just not helpful at all and it just adds to their suffering. But that’s not because there’s anything inherent to dialysis, it’s just a tool we have to care for patients. And rather than talk about these interventions in terms of moral quality or good and evil, it’s more helpful to just talk about, do they help you achieve your goals? What’s your goal?
If your goal is to live well and to have a comfortable life, dialysis may help you do that, but there’s good evidence that for a group of patients, it won’t do that at all, it’ll do the exact opposite. And so it’s not … And we sometimes use this language to try and convince people one way or the other, but it’s much better to have a conversation that’s based on your goals and values and what you hope to achieve and then see how these treatments will help you achieve that goal or not, rather than somehow imbue the treatment itself with some moral character. It’s like, “Oh, you’d wanna avoid this evil thing.” Dialysis is not evil. It just is.
Eric: Thank you, Steve, for joining us. Again, the book is called, Life After the Diagnosis, and maybe we can end with another verse?
Steve: Thanks a lot, it’s been fun.
Alex and Eric: Gotta do what you can just to keep your love alive. Try not to confuse it with what you do to survive. In sixty-nine, I was twenty-one and I called the road my own. I don’t know when that road turned, into the road I’m on.
Running on, running on empty. Running on, running blind. Running on, running into the sun but I’m running behind.