A Palliative Doctor on Dying, End-of-Life Planning, and Living Well with David Casarett

In this episode, a palliative care physician explains how early support and thoughtful end-of-life planning can reduce fear, ease suffering, and improve quality of life for patients and families.

Dr. David Casarett, chief of Palliative Care at Duke Health, describes palliative care as whole-person support that relieves symptoms and helps people make difficult medical decisions, even while receiving aggressive treatment. He contrasts this with hospice, which focuses on comfort for those expected to have six months or less to live. 

00:17 Welcome to Seeing Death + Meet Dr. David Casarett

01:49 What Palliative Care Really Is (and What It Isn’t)

03:50 Palliative Care vs. Hospice: The Key Differences

04:39 How to Access Palliative Care Outside the Hospital

08:42 Misconceptions & Resistance: Why Palliative Care Gets Misread

10:38 Making Hard Choices: Ventilators, Odds, and Patient Goals

14:08 Age Isn’t the Whole Story: Function, Resilience, and Will to Live

16:15 Inside the Interdisciplinary Team: Social Work, Chaplaincy, Nursing & More

19:23 The Undiscovered Country: A Doctor’s Travel Guide to the End of Life

20:21 What People Fear About Dying (and What It Often Looks Like)

21:34 How Death Happens: The Body’s Timing, Physiology, and a Peaceful End

25:04 The Moment of Death: Quieter Than the Movies

25:57 What Comes After? Making Peace With the Unknown

26:34 Can People Sense Their Death? Monks, Intuition, and Timing

27:59 A Patient Who ‘Needed to Go Home’: The Botswana Story

31:43 Patterns Across Cultures: Visions and ‘People in the Room’

32:57 Terminal Delirium vs. End-of-Life Visions (and When to Treat)

35:47 Why Education Matters: Preparing Families for What’s Normal

36:36 Media Myths, Hospice Misconceptions, and Getting Support Sooner

41:45 Changing Care Earlier: Goals-of-Care Conversations + AI ‘Goal Coach’

45:23 Where to Find the Book + Final Thanks and Listener Support

Website: www.casarett.com

LinkedIn: www.linkedin.com/in/david-casarett

David’s TED Talk: A Doctor's Case for Medical Marijuana

David’s TEDxTalk: Gods, Munchkins & The Science Of Reviving The Dead

Transcript

What I'm most proud of is the progress you've made on conversations earlier. The oncologist or the patient after diagnosis says, look, we've got a lot of stuff going on, a lot of decisions you're gonna have to make. Just tell me about what's important to you, what matters to you, who matters to you. So I'm a better sense of who you are as a person.

Welcome back to Seeing Death Clearly. I'm your host, Jill McClennen. Death doula and funeral celebrant. On this show, I open an honest, compassionate space to explore death, dying grief, and what it means to live fully, even in the hardest moments. Today I am joined by Dr. David Casara, a palliative care physician, author, and chief of Palliative care at Duke Health.

He has spent his career helping patients and families navigate pain, uncertainty, and complex medical decisions with clarity and dignity. We talk about what palliative care really is. How it differs from hospice, why it's often misunderstood as giving up, and what dying [00:01:00] actually looks like beyond TV portrayals.

If you've ever wondered what truly supportive medical care can look like, this conversation will change how you think about serious illness and end of life care. Thank you for joining. Welcome, David to the podcast. Thank you for coming on today. Can you tell us a little bit about who you are? It's great to be here.

My day job is working as a palliative care physician. I'm the chief of palliative care at Duke Health, and we're also director Duke Center for Palliative Care. In addition to that, also the father of a 7-year-old, which is maybe another full-time job writing gets in there as a third full-time job when they're signed for it.

Writing. Took a bit of a hiatus with the advent of a kid and a full-time jobs, but actually do have a book that just came out in October called The Undiscovered Country, A Doctor's Travel Guide to the End of Life. Can you actually tell us, because I think a lot of people don't really understand palliative care what it is.

I think there's this idea in that palliative care is [00:02:00] only hospice if anybody's even heard the term at all before. So can you explain to us a little bit about what palliative care is and how it differs from hospice? It's really interesting. Maybe 10 years ago, palliative care was not a household word.

I'm not sure it is now, but it's getting close when I'm on service at the hospital. Probably 20, 25, sometimes more percent of consults come in because patients or families ask for it. They say, look, I know my mom's not doing well, or My brother got palliative care. Do you guys have palliative care and could we see a palliative care provider?

So I think name recognition is definitely. Um, moving up in the world, palliative care is a medical specialty, just like nephrology or geriatrics or pulmonology or cardiology. Instead of taking care, heart of the lungs, we take care of the whole person. I usually describe palliative care to patients and families is doing one of two things.

One thing. Usually pretty good at is treating symptoms like pain, nausea, shortness of breath, and number [00:03:00] two, we often help patients and families when they're facing difficult decisions, and that might be a really early decision about how aggressive to be about a new diagnosis of pancreatic cancer. Or sometimes it's a late decision about whether to go to the hospital again, whether to go on a ventilator.

For respiratory failure. The one thing that I always emphasize is we're not the deaf and dying service. We're not the end of life service here at Duke. We take care of a lot of people to going through aggressive treatment with the hope and expectation that they'll come out the other end whole and healed.

We do a lot of work in the bone marrow transplant population. They have often really difficult symptoms, but they're going for a cure and many of them do get a cure or patients. Being considered for heart or liver transplants, we see those patients as well. So not about death and dying, although that's certainly a part of what we do.

You asked about hospice. I think the big difference, there's certainly a lot of overlap. I've worked as a hospice medical director for years, and our healthcare providers here at Duke, staff [00:04:00] Duke's Hospice, so there's some overlap, but hospice is really for people who, according to regulations, have a prognosis of six months or less if the illness runs its usual course, and who want to focus on comfort care.

That includes some of our folks that we see in palliative care. But as I said before, we take care of a lot of patients who are going for it, getting heart transplant, lung transplant, nowhere close to hospice, but we're there to support them to seek, think of palliative care as being broader and in a lot of ways earlier than hospice.

I think that was my understanding in somebody explained it, that palliative care is like the umbrella. Hospice is a type of palliative care, so it's. Connected, but it's not the same. I had never heard of it either until 2019 when I started looking into becoming a death doula. I hope that more hospitals.

We'll start offering palliative care. I know at least the one that's closest to me does have a palliative care team, but there's not a lot of options for palliative care outside of the [00:05:00] hospital. I think a few hospices also offer palliative care, but there's not, at least as far as I know in my area, specific palliative care.

Doctors that work outside of hospitals or hospice? Is that something you see any of, I'm sure there's people listening, thinking maybe palliative care would be something I'd be interested in talking to somebody about. But if they're not in the hospital, if they're not going to the hospital regularly, 'cause maybe their symptoms are managed and their treatments are going okay, they don't really know where to look for it, and I'm not always really sure where to tell them to look for it either other than their hospitals or maybe a hospice.

Palliative care really grew as an inpatient hospital specialty for a variety of reasons. I did my palliative care fellowship in 1999. Back then, there weren't many palliative care providers out there at all, and I think those of us who were in the business really trying to focus our limited. Bandwidth on where we could do the most good.

And that was mostly inpatient. That's where the highest [00:06:00] density of really sick patients generally. Um, but specialty has grown. It's really expanded to outpatient care right now. Duke cs, if not the biggest, certainly one of the biggest outpatient clinics for palliative care anywhere in the country. And we see far more people, outpatient clinic than we do in the hospital, and that's, it should be, we want to see people before they're hospitalized, before they need us for acute symptom management to patients and families.

If you're looking for palliative care, but you're fortunately not in the hospital, then looking for hospital health systems that offer palliative care clinics. As a way of getting in the door, establishing a relationship, getting symptoms managed, and making decisions before you really need to. I think the big growth area that's been unfortunately slow is providing palliative care in people's homes.

I think there's a huge need for that. Often the best way to get palliative care at home is through hospice, but not everybody has that. Prognosis is six months or less. A lot of people don't have goals of care. They're focused on comfort, but they still have symptom management needs. [00:07:00] When I was at the University of Pennsylvania and here at Duke, we set up home-based palliative care programs.

It's financially difficult for a health system to sustain. Mm-hmm. So there are some programs that offer nurse practitioners visiting patients in their homes, but they're hard to keep going financially. If a health system hits bad financial times, that's not necessarily going to be top of the priority list for health system leadership.

Duke has been exceptionally supportive of us in doing that and fortunate that way. But not every other health system is like that or has those priorities. Yeah, unfortunately, like a lot of places in our society, it seems like we have our priorities a little mixed up from the limited knowledge that I have of volunteering with a palliative care team.

It's so valuable to people that are going through treatments that are not always asking the right questions of their doctors. They're not always sure of what they should be thinking of [00:08:00] next. They're not getting necessarily the care that they want and need. Where palliative care seems to be that team that kind of comes in and helps people get clear on what's important to them and how to get that versus just.

Only pursuing treatment for curing. When is it time for somebody to change directions? And so it's a shame. That would be the one thing they would get rid of. If you're giving people the option to not do treatment, they're not gonna make as much money. If they're not having people do all these treatments, they're not necessarily gonna make as much money.

But again, I come from outside of healthcare altogether, I am an end of life doula that came from food service. So I think in some ways. That gave me a really interesting lens because I thought that hospitals, doctors, nurses, the whole thing, I thought they were gonna be really good with death and dying, that they were gonna have this thing understood, be really good at talking to people about it, be really good at working with it.

[00:09:00] And that was not my experience. I was really surprised at how uncomfortable, even when I was volunteering in the hospitals, some of the resistance. That other doctors had towards our palliative care doctors. I was like, oh, this is interesting. Was that something that you've seen, that there's a misunderstanding maybe, and resistance from other people in the medical community towards palliative care?

Yeah, that's a great question. There are two answers. One is what's out there in the world, and two is what I've seen. I think what's out there in the world is, yeah, there's a lot of misconception still about palliative care. I think healthcare providers probably know and understand more about palliative care than the average person on the street.

But we did a survey at Duke a couple months ago to begin to inform our efforts to educate the public about palliative care and, and the majority of patients we surveyed. The representative sample of Duke Health's patients found that the majority had at least a decent understanding of what palliative care is, knew that it was [00:10:00] different than hospice, and knew that it was not about death and dying.

Only about one in 10 knew how to access palliative care, which is interesting and something we're working on. Patients had a pretty good understanding. And I think to answer your question, providers, healthcare providers probably have an understanding of palliative care that's at least as good, wasn't that way when I first started training 25 years ago.

But I think that the barrier often for a lot of providers is less about knowledge. And you mentioned finances before. Honestly, the doctors I work with don't pay attention to finances. Nobody's trying to treat patients more because we make more money, at least. In our practice. That's the way it works. We treat because we think we can prolong life, what everybody's focused on, if there's resistance to palliative care, now it's more subtle.

It's not so much financial motives. It's more like if we brought your mom into the hospital and we agreed that we were gonna put her on a ventilator for a week, I think there's at least a 10, 20% chance she could get over this pneumonia and might live for another couple of months, [00:11:00] like good quality months.

And when a provider is thinking that, and then we come in, they're thinking, I've had a really good 10, 20% chance of giving this person more months of life. Why are you talking about end of life care? Why are you talking about comfort care? When I hear that it's not get out of the room, it's more puzzlement.

It's often produces a really good conversation of, all right, let's sit down and talk with this patient's family about what would be involved in getting her that 10 or 20%. Chance of living a couple months, what would she have wanted? And lots of times in those conversations would come out of it saying, yeah, we're gonna take her to the ICU and give the best shot because that's what she would've wanted.

And that's, from my perspective, totally fine. The point is not to get to an answer that is leading toward comfort care and end of life care, but to get to an answer that's consistent with what the patient wants. When you practice at a place like Duke, everybody's got stories of patients who nobody ever thought would've made it, who actually did.[00:12:00] 

Some people might say it's a little bit illogical. You should look at the data, not the case that you remember, but we are, remember if you vivid cases, we've all taken care of patients like this. Uh, 21-year-old lady who's pregnant with her second child has one at home, gets influenza, winds up on our ventilator.

Nobody ever thinks she's gonna get off. Are you kidding? Really start talking about comfort care for her. It's gonna take some work where should be really aggressive, and if we get signals from the family, obviously the focus there, even when palliative care has gotten involved in the care of patients like that, we come in thinking, all right, we'll talk about goals, but man, if there's a chance we can pull her through this, we're gonna do it.

It's not about trying to push people into taking one option or another. It's just giving them all the information to make informed decisions based off of what is important to them. And that seems to be a misconception, at least again, of like hospice is giving up. When somebody gets onto hospice, it's [00:13:00] like that's the end.

They're dead, basically. And that's not always the case. I've seen people live. Long after they've gotten onto hospice past the six months, but they've stopped the treatments, they've stopped all the things, and now they're comfortable and their symptoms are managed. And so now it's a year or two later and they're like, am I even supposed to still be on hospice?

But they've been able to live longer with the symptoms managed. So it's not always about trying to say that this is the best option, but giving people the information to make informed decisions. Not just saying we can try the ventilator, it's, I don't know, depending on age. If I was 21, even now at 47, if I were to have something go wrong, try the ventilator if you think it's gonna help me live.

But if I was 87, nah, I don't think so. I think I'd be okay. Just saying, let me just be comfortable. But I also for some of that too, the chance of them getting off the ventilator and being able to live a quality of life [00:14:00] changes with age, doesn't it like I think. That's at least, again, my understanding, it changes based on age, but it changes based on a number of factors too.

I trained at the University of Iowa where longevity was something that was just in the water there. I would take care of these 95-year-old guys who were still. Like their son and daughter-in-law have the farm now, but they're out there every day on the tractor doing something and one of those guys comes in needing gallbladder surgery or with pneumonia.

And probably the worst thing we can do is say your dad's 95. I'm not really sure they'd say. Yeah, he roped 30 stairs last weekend, so please don't think of him as just your typical 95-year-old. So there's age for sure, but there's also how functional people are and how cognitively intact we are and what other sorts of things are going on.

95-year-old who's healthy, a 95-year-old, but a touch of high blood pressure, 95-year-old with early dementia and peripheral [00:15:00] vascular disease and heart disease and pancreatic cancer, totally different. So I think figuring out from people. Both seeing beyond that superficiality of he's nine five with hypertension and really looking at what people can do and to some degree, I dunno, I'm getting mystical here, but there definitely is some will to live that is pretty hard to quantify.

But I'm convinced that a 95-year-old who's entire family says is a fighter, probably has a better chance than a 95-year-old who this family says well. He'd probably say he is got a good life, and I don't really know how to quantify that, or certainly to explain the physiology underlie that phenomenon.

But you definitely see these people who may look sick and may have demographically an age that puts them at increased risk, but they've got something special and they're just gonna keep going. The only way to make sure we've got a good care plan for those people is to understand where they're coming from.

Plan that care accordingly. The care plan that's important. It [00:16:00] has to be designed for each person. It's not something you just Google and follow the plan. It has to be individual for each person based off of. What their wants and needs are and their health conditions and the whole thing with your palliative care team.

I know again, the hospitals that I volunteered at, there's the doctors. There was a lot of social workers, like both teams had like more than one social worker that worked with people. There's chaplains, like there's a lot of people that make up a palliative care team. A lot of the work they did was just talking to people and helping them plan for the future.

Whatever that future looks like for them. So what's your palliative care team look like? Yeah. It depends on which hospital. We have multiple hospitals here at Duke. I can tell you that the ideal palliative care team is a social worker for sure. A chaplain, a nurse, or somebody with nursing background, like a nurse practitioner, a physician.

I think those are the core elements. We offer volunteer services. Oh, we have access to [00:17:00] pharmacists. Psychology and a child life specialist for patients who have younger kids. Other strategies and specialties we have available to us, like occupational therapy and physical therapy. Those are the outer layers of the onion, but at the core is what we talked about first, like physician, nursing, social work, chaplain.

Those are the core. Resources that palliative care teams really need. To be honest, we stole that from hospice. Hospice was the first palliative care interdisciplinary team that regulations say, need to have these specialties to be a Medicare certified hospice. As palliative care was growing up in the shadow of hospice, we looked at hospice and many of us worked part-time or full-time as hospice medical directors and thought this is actually.

Great. You get this entire team together, um, to talk about what this patient and family need. You hear from the physician, but you really hear from the nurse, the social worker or chaplain and volunteers that have been hanging out with the patient's wife. That's how you develop a care plan that's really focused, not just understanding what.

Patients and family's [00:18:00] priorities are, but also getting those different perspectives involved because you, our chaplain sees our patients very differently than I do. I tend to be focused on, not entirely, but a combination of managing pain and thinking about how to navigate the big decisions like public start.

A ventilator and circulatory support, and they're focused on other aspects that are just as important, then you really only get a great plan together if you can bring everybody together. We meet as a team to take care of our hospitalized patients. Every morning we run the list and everybody on our team has a chance to weigh in and argue with each other and correct each other and add to our own perceptions to come up with care plan.

It's truly interprofessional. That's what teams are for, right? Get everybody together. Everybody's got their specialty and their. The thing that they can focus on and you get together as a team and put term put in. I love that team aspect. I really enjoyed both hospitals that I was at with the palliative care team.

I just think it's such beautiful work as an end of life [00:19:00] doula. My role there as a volunteer was talking to people about their fears and anxieties about death and dying. Sometimes the palliative care team would have people. That they're like, this person is probably nearing death and they're alone, so why don't you go sit with 'em?

And so I would just go and I would sit with them. My role was interesting. I just filled a lot of different holes. Yeah. I wanna hear more about your book because what did you say the title of it was? The title was Undiscovered Country Doctor's Travel Guide To The End of Life. The Undiscovered Country part is a famous quote from Shakespeare.

There's a line from Hamlet about how the undiscovered country is the land from which no one returns like imperfect translation of Shakespeare. But this scene, that quote, once got me thinking that's true about. That's the one experience that you can't go on social media and look for likes and ratings and reviews on Yelp.

You don't really have any idea what to expect. 'cause no one, [00:20:00] almost no one comes back from, and which made it both interesting and a little bit mysterious and I thought worth digging into. I agree. I've talked to people who've had near death experiences, which I find totally fascinating. But also I think part of what I.

Appreciate about death is the fact that we don't know what comes after this. When I talk to people about death and dying and what they're afraid of, it falls into three things. They're afraid of what's gonna lead up to death because they've seen whoever in their family hooked up to a bunch of machines, a long, drawn out process that was really painful.

I do occasionally hear people say, I am afraid of what happens at the moment of death. Is it gonna be painful? Am I gonna be afraid? What's that gonna feel like? That's one of those things where we don't know for sure, but what I try to tell them is when I've been with people as they've died, most of the people, at least that I've been with, there didn't seem to be fear.

There didn't seem to be pain. It seemed [00:21:00] pretty peaceful to me. Again, doesn't mean it's everybody's experience, but that part I'm not afraid of. And then there's the people that are like, I don't know what comes after this. I'm like, you're right. None of us know for sure, which is why I love to talk about it.

So in your book. What do you focus on as far as this land that we have not discovered yet and that we are definitely not coming back from? Eventually all of us will get there and not come back. Yeah, and come back to their death experiences. That's an area that I had skeptically pooed, but diving into it made me realize there's actually maybe something there.

To answer your question, I think my focus was. Kind of the flip side, I think in retrospect it's easy to see somebody has advanced pancreatic cancer, advanced heart failure, lung disease, liver failure, death is expected. I think what struck me time and time again and taking care of often very seriously ill patients is that this distal reason why people die, but it's not an explanation for [00:22:00] why somebody died in this particular moment.

By that I mean our bodies are really amazing, resilient. They can withstand a lot. I told the story in the book a really tragic accident that I was called out to when I was a resident. We spent some time going on calls with paramedics. And went to see this horrendous accident. There were a couple of kids involved who were pronounced stand up the scene, and a woman there had lost both of her legs and I think probably two thirds or more of her blood, and nobody ever thought that she could survive that.

This was rural area, probably a half an hour life flight to a hospital, and yet somehow she survived losing almost all of her blood volume. We've all, I think in healthcare, I'll see these stories of somebody who really should have died not once, not twice, but often, multiple times, and somehow they didn't.

Or people with really advanced disease who by all accounts should not have survived as long as they did. But have, and family is grateful and healthcare providers are surprised. [00:23:00] The patient himself or her herself, just amazed. But these stories happen and I think what really became interesting to me is not so much how death works, but.

How does death happen now? Why in this particular moment did this person die when in theory statistically they should have died months or years ago? The body has this tremendous ability to keep on keeping on, which just makes it all the more fascinating how and why death happens when it finally does. I told the story in the book of a, A man I met who's on hospice really got me thinking about this question in the first place.

I was working with a doctor named Henry Taylor, who's a, at that time was a rural physician internist in Franklin, West Virginia. Went to see a man who's being cared for by hospice, and he died shortly after I arrived. The hospice nurse had asked me to check in on him. He didn't have any family or neighbors close by and asked me to check in on him.

He died shortly after I got there. This is a man who'd been struggling all his life with a variety of health [00:24:00] and social issues. Had advanced cancer. And finally in that moment, despite everything else that had been going on with him, it really made me wonder, so resilient and so strong, and his body's physiology was so tightly regulated.

Why did it fail in that moment? And that physiology to me is fascinating because it tells us a little bit about your second question, which is what happens right at the moment of death and what do people feel make it? The longer answer to your question, to finish that up is. I like the way you set that up.

What happens in a time leading up to death and death after nobody really knows, but before we can do a lot to make sure that people are comfortable, not completely comfortable all the time, but we have far more medications and interventions in our toolkit now than we did even when I started in palliative care 25 years ago.

Um, so it can usually make people comfortable at the time of death. It's not scary, it's not painful, it's not frightening. Generally peaceful. As long as we can manage symptoms. [00:25:00] That last moment of life is, is someone I've seen, not something to be afraid of. Is that what you've seen too? Yeah. I didn't know what to expect coming from outside of this altogether.

I didn't know what to expect at the moment of death. It was not exciting. Right. I definitely was just, I think they stopped breathing. I think they're dead. We see in movies, there's the last gasp and it's this dramatic thing when really it was more just. A lot of sleeping, some strange noises. It definitely was a little interesting leading up to it, and then it just all stopped and I was like, I think they died.

It was really not as dramatic as I think a lot of us think it's gonna be, which is good. Right. I don't think that most of us want that really dramatic and like you mentioned, leading up to death, we can control symptoms and that's what I tell people. I'm like, look, that part, we actually can do a lot with.

The moment of death seems pretty peaceful. What comes afterwards? Honestly, none of us know for [00:26:00] sure, but we're all gonna find out one day. So there's really no point in worrying about it. I think that's easy to say when I'm somebody that's okay with whatever happens. I'm not attached to, oh, I wanna go to heaven.

Maybe there's a heaven. I don't know if I go there. Okay, cool. I don't really think I'd go to hell, even if that's a real thing, but maybe I would. And if I did. I don't know. I must have done something to deserve it. If I go out like a light and nothing's afterwards, that's okay with me too. Doesn't really matter to me too much.

I just love to talk about it. So what else With your book, you're trying to think more about why some people die when they die. Because actually I know that there's monks that supposedly have been able to like sit down and die when they're ready. They've even predicted, tomorrow's gonna be the day I'm gonna sit down and tomorrow's the day and I'm gonna sit down and meditate and die.

So there is some, I don't know if you'd call it [00:27:00] evidence, but there is some stories that people that are really aware of their body and spend a lot of time meditating that they can actually control the moment they die. But I have also talked to people that like you saying like why nail? Why do some people die when they die?

Other people live when they really should not have lived according to what we know. Did you come up with any interesting things around why some people die when they do? Laura, putting aside psychology for a moment, because it, there's this underlying question of, and people decide when they die. My impression coming into it has been not sure I would understand how somebody could determine when they're going to die.

It's easier for me to get my head around the fact that some people by no means all, but some people can sense that they're going to die because they have access to data that we don't have. It's not a matter of choosing, but more a matter of being able to tell the future based on the way that they feel.

[00:28:00] I tell the story in the book of a patient. I took care of my previous institution, university of Pennsylvania. We had a relationship with a hospital in Botswana. Helped to develop a hospice and palliative care program. There I was back and forth spending a bunch of time at the main Princess Marina hospital in Botswana and took care of a man who was hospitalized with advanced HIV, but was relatively stable on antiretrovirals.

Botswana is one of these countries that have been really aggressive at providing antiretrovirals for free if needed, to anybody who needs them. He was a beneficiary of those programs in hospital. I forget even why he was hospitalized, but he became insistent that he needed to go home. Not that he wanted to go home, but he needed to go home.

This was urgent for him and not like he was imminently. Dying and wanted to die at home. He just really wanted to get outta the hospital. And so we accelerated his treatment, got him home, took up a collection, put him in a taxi cab, sent him home, and actually I went home with him because I was still trying to figure out why he was greeted by [00:29:00] his mother and extended family.

Went back to the hospital and I found out he had died just a couple hours later, and it's still a mystery to me, like none of us had any clue that he was that near the end of life. But I can only imagine that maybe he knew who he was. What signals did he have? What did he know that we didn't? I hadn't taken care of many dying people, so I'd like to think my clinical acumen is a little bit sharper than it was back then.

Even in retrospect, I can't think of anything that would've made me think that he only had hours. He would ask me. I would've said months, probably years. But he knew something. Um, so I think that. I'm not saying that's explains everything. The associations between somebody saying they're dying and they actually are, but knowing that something is wrong, knowing that something's out of sorts, knowing maybe that you're really sick, and then interpreting some feeling as being associated with imminent death, that seems to be.

More [00:30:00] plausible to me to think that we're controlling our deaths, um, more, at least the timing of them. We inhabit these bodies, some of us for decades. You get to know over time what's normal, what feels normal, what's not like walking into a room that you've been in every single day of your life. And it's pretty easy to see a cushion or a.

A China cat that's place. I think we inhabit our bodies in the same way, and we're sensitive. When there's something different and you feel something different and you've got a serious illness, you've been thinking a lot about death lately. It's not a huge stretch to imagine somebody would interpret that or maybe imminently dying.

And certainly everybody especially talked about hospice nurse. They've all got stories, as we all do, of people who seem to predict their deaths with uncanny accuracy. The people who say, I'm ready to see my mom who died 15 years ago, or, I'm ready to go home. And sometimes when somebody in the hospital says, I'm ready to go home, that's exactly what that means.

I wanna go home just overtones [00:31:00] whatsoever. They just want to get out of the hospital and go home and see their dog. Um, but often it means something more significant. It means they're ready to die. We've all had stories of people who have said they're ready to go home, and then 10 minutes later they die.

It's hard not to interpret that as being somehow prescient. Although, to be fair, maybe people say that a lot, but we really only remember it when they said that 10 minutes before they died. So maybe a little bit of selective memory there. These stories happened so much. I've gotta believe that we've got some inability to sense when things are wrong, to draw some conclusions, and to be able to identify that death is maybe closer than it seems to the people around us.

I think that's the thing that interests me as well, is how it doesn't matter what country people are from, what culture, what religion. There seems to be similarities. In what they experience leading up to death, including the one that a lot of hospice [00:32:00] nurses will tell you about, and that I experienced with my grandmother of talking to people that aren't there, but they're like, no, they're here.

They're in the room. Like, why don't you see them? Why don't you hear them? It seems to happen throughout different cultures. It's not like it's just in America that people nearing death are saying that there's beings or people in the room that they're hearing or talking to. So there's definitely things that.

I don't know. Again, maybe it's a little mystical or magical if you want to think of it that way. Whatever it is. It's interesting that we all seem to have a similar experience. This is of course, talking about people that are dying with a progression. But again, if you die in an accident, maybe right before the moment of death, you see people too.

I don't know. We don't know. 'cause people aren't typically aware and able to say, oh, it was in a car accident with somebody that died and they said they saw somebody right beforehand. We're not usually. Able to do that. I don't know. That's fascinating and I'm still undecided. There certainly is a phenomenon of [00:33:00] terminal delirium, which is delirium, confusion, alterations in levels of alertness and perception, including hallucination.

Um, that happens near the end of life, which really isn't that much different than delirium that happens in older adults when hospitalized after surgery, for instance. There's nothing really special in my mind, at least about terminal delirium. The aspect of the terminal piece doesn't really make it unique, but there is something different with these visions.

Usually with delirium, there's an alternation In level of consciousness, people are waxing and waning consciousness. They may not be even aware of who they are and where they are, even though there are hallucinations with people who experience these visions. Their cognition is generally more intact. It's not somebody who sees spiders on the walls and has no idea where they are.

It's somebody who knows exactly where they are in a hospital, and we're having conversations with two cousins that they used to fish with. 60 years ago, [00:34:00] growing up in rural Iowa, it's, it's really a different phenomenon, although I don't think anybody really understands what makes it different. To a casual observer, it looks like delirium.

You're talking to somebody who's not there. So I think sometimes visions get written off as delirium, but I also think that people who experience those visions have more cognitive capacity. They're more in tune with who they are and where they are. They may be confused to some degree, but not nearly as much as people are with delirium.

They're different sides to the same coin. I definitely agree with hospice nurses that in general there are medications to treat delirium confusion to the end of life. The question we usually ask ourselves is, is this harmful? Is this dangerous? Is this uncomfortable? Somebody who's really. Delirious in the hospital stared seeing rats under the bed or spiders on the wall, that that's causing distress.

It's worth treating. I don't know of anybody, certainly a hospice nurse who would give medications to try to kick that man's fishing. Cousins of the [00:35:00] room if that's something that is not causing distress. And is actually enjoy, enjoyable, meaningful in some way. I'd hope we wouldn't think about treating that.

That's the difference in how we respond. When you treat one, you wouldn't, but the physiology of what makes visions different from delirium, I'm not sure anybody knows. I certainly don't. Yeah. It's probably more for the comfort of the people around. Again, I was a little. Upset about it. I was just more confused because I didn't know that this was something that could happen.

And when you're up with somebody in the middle of the night and they're talking about the people that are standing behind you, you're kinda like, what is going on? So I could see how for some people that were there, they might say, can you just give them something to make it stop because it's upsetting me.

Mm-hmm. Which is unfortunate. I would hope that most people with a little bit of education, and I think that's part of why, I know that's part of why I do the podcast. It's why I do a lot of the work that I do. Just trying to educate [00:36:00] people. About the realities of end of life so that we can all face it a little bit better, whether it's our own or somebody else's, because it is unfortunate that most of us have never talked about it, have never thought about it, and then they end up in a situation like me where all of a sudden it's, here's your person, they're dying.

Good luck. Take care of 'em. I didn't know what I was doing. So I figured it out as I went, but I'm also a curious person and I was never afraid of death, so it was easier for me to just embrace it with curiosity. Not as much fear, but I'm trying to do that for other people as well. And I'm sure that's why you wrote your book, to give people more realities about what death and dying actually look like versus what we see in the movies, which is not actual death.

No, it's not, nor does does happen when it should in the movies. We did a study years ago, some friends and I looking at the survival of people who were in comas [00:37:00] and how many people recovered their consciousness, how many people recovered their function only. We decided to look at the population of patients at COAs and soap operas.

Um, my research assistant, Ali, had so much fun because. For a period of couple months just and watch soap operas, I think it probably scramble their brains for the rest of her life. We found that if you're in a coma, in a soap opera, you do much, much, much better cognitively, functionally than real people in coma do.

And there have been other studies looking at how people survive cardiac arrests on TV versus. In real life. And obviously if you have a, maybe not obviously, but if you have a cardiac arrest, if you really wanna do our own TV show, 'cause that's, that's what gives you the best chances. And people in tv, on movies, even in literature, tend to be more awake and alert right up until the very end.

And as you said, often people subside into increasing sleep. A little bit more confusion. Whereas his last final words usually come from TV and movies. They're more cinematic and the script writers wanna make sure you get every [00:38:00] ounce out of that actor up until the second they die. They're talking, laughing, whatever, up until the very last moment.

But that's not usually the way it works. They're lots of misconceptions that we get from the media that a lot of of us who work in life care, deaf doulas, palliative care folks, hospice nurses, need to spend some time undoing. People expect survival. People expect folks who are dying to stay awake and alert up until the very end that they don't expect a lot of things that do happen.

Like people who get confused, see visions. So I think there, there's a need for a lot of education, both in the work that you do and then also in real time like a hospice nurse. Coming out every day and talking to a family about what to expect over the next 24 hours because you can hear and assimilate whatever you want from a podcast.

But if years go by before you're actually in that situation, you will have probably. Forgotten all of it. Somebody listening to this now and then taking care of their mother five years from now, probably won't remember you or me or anything else. It'll be down to the deaf [00:39:00] doula, palliative care team or the hospice nurse to remind them of what happens, what to expect, and what we can do.

Real time handholding and education really is essential. That's one thing that hospice is really well. Yes, they really do a lot of things well when it comes to end of life, but really educating families and helping them understand. What's going on is really important and it's really helpful. That's why I get upset when I see people waiting so long to sign on to hospice because there's this misconception that you only sign on to hospice when you only have a few days left to live, and I'm like, no, really?

You can use it a lot longer and it will help you and your loved ones. There's a lot of misconceptions we need to overcome in society about. Death, dying and Hospice. Definitely. The Hospice of Conception is really self perpetuating. I've had so many people tell me I don't want to go on hospice because my wife went into hospice and she died two days later, so I'm not ready [00:40:00] to go yet.

You can tell people that's not because hospice ended her life, but because you all waited so long, you enrolled and then she died. It's not cause and effect. These experiences are so visceral. If you've been married to somebody for 56 years, you put her in hospice and she dies two days later, nothing. I can tell that man is gonna convince him that hospice didn't kill his wife and isn't gonna kill him.

But that's his lived experience. I doesn't know me. I can't correct that. It's challenging the rate at which people are using hospice has increased over the last 20, 25 years. More people are using hospice than ever before, but they're really not enrolling in hospice any sooner. I think it's partly.

Misconceptions about what hospice is and biases against hospice. It's certainly the requirement that you really need to focus on comfort care. Some people are just not willing to give up aggressive treatment. I gave up a long time ago trying to get people to enroll in hospice sooner. It's an option, certainly, but I've been much more interested in trying to figure out how we can provide the [00:41:00] kinds of care that people need before they enroll in hospice.

Not that we're trying to replace hospice. People really don't wanna enroll in hospice until the last weeks of life. Then it's on us as a healthcare system to figure out, hey, if they're not gonna enroll in hospice, but they have really bad pain, what are we gonna do about it? And how can we develop systems of care that manage that pain, those symptoms, those spiritual psychosocial needs.

Before hospice because we've tried to get people into hospice and or it hasn't worked, then we really take our job seriously. Then we need to meet people where they are and we need to take care of them outside of hospice. So that's been a focus a lot of my career, trying to develop innovative programs and solutions for people who are not yet ready for hospice.

It's a slow process and it requires funding. It's not simple, but it's the reality that we live in. Is there any things that you've seen that have really worked well to help people start looking at options earlier? Not even hospice, but things that you've seen within hospitals or doctors? The way that they say [00:42:00] things, the way that they ask questions, like what's been something that you've said, this has actually been impactful.

Getting to this goal that I have of changing can't change people. We gotta change the way that we do things. Yeah. So two answers. One is just encouraging more and earlier conversations about goals. We've been working on this for about three years now. Really encouraging healthcare providers to sit down with patients and talk with them about what's important.

Some of those conversations are in the moment. A patient who's not doing well in the hospital decision is being made about whether to go to surgery or the ICU, but what I'm most proud of is the progress you've made on conversations that are much earlier. The oncologist that sits down with a patient right after diagnosis and says, look, we've got a lot of stuff going on, a lot of decisions you're gonna have to make, including big ticket decisions about some major surgeries.

Just tell me a little bit, if you could, about what's important to you, what matters to you, who matters to you, so I'll have a better sense of who you are as a person. So when we make these decisions, we can make these decisions together. [00:43:00] Right now, duke Health, we're probably having 70 or 80,000 of those conversations every year that weren't happening, or at least weren't documented before we started this initiative.

And those conversations, even if it's just 10 minutes, that gives an oncologist, or a cardiologist or a nephrologist a better sense of who that person is and what's important to them. I think could be really influential in changing care down the road. Um, sometimes in the moment, sometimes not for a year.

It's really nice to see an oncologist go back to a patient and say, I remember you told me that you really wanted to make it through to see your granddaughter graduate from college. I know that's not, could be for another six months. So let's talk about what treatments are available now that's really important to you.

But you don't know that unless you have that conversation. I've been working with her social science researcher named Katherine Pollock here at Duke, um, partnering with a company called Caria, which is a caregiving platform based here in North Carolina. We put together a platform called Goal Coach, which is a.

An audio chat bot, AI powered that has a goals of care [00:44:00] conversation with people. Sits down with them over the phone, asks them questions about who's important to them, what's important to them, and then provides a summary, including a summary that includes would you like to talk to your oncologist or cardiologist or nephrologist about any of these things in more detail?

We're hopeful we'll get a large federal grant to optimize that platform. That's a way of beginning these conversations, even before an oncologist or a cardiologist has time to have these conversations in clinic. This is a conversation in theory could happen with anybody. Anybody who's plugged into a health system would benefit from Having these conversations is a preliminary way of figuring out what's important.

What are your priorities, your goals, your hopes, your fears. Getting those sorts of things into the medical record alongside their most recent x-rays values for sodium and blood counts. Those are data points that are just as important as how high or low your sodium is. But a data that we're not really good at collecting as health systems.

We're hoping that technology like this would allow in theory, health [00:45:00] system to have a goals of care conversation with every single patient they take care of and getting that documented in the health system. I think that's, that could go a long way in making routine the sort of conversations that. We really should be having two different ideas on different ends of the spectrum, but I think both of those and options in the middle could be helpful in making sure the care we deliver is consistent with what people want.

Yeah, I love that. That's great. So tell us a little bit about where people can find you, where they can find your book. I'll put links in the show notes. You don't have to spell anything out. Is there a website? Where can people find you? My website is david cassera.com. Not very original, and I would encourage people to pick up the book.

I'd love to know what you think. Undiscovered Country, A doctor's travel guide to the End of Life. It was so much fun writing. It wrote it in part from my 7-year-old son who engaged me in a conversation a couple years ago about what deaf is and nothing really tests your understanding of a body of knowledge who's five years old time, like a five year old's.

Questions. I would love to see if my answers are as helpful [00:46:00] to you. Just maybe they weren't. To him at the time. Beautiful. I'll put all the links in the show notes. We never even got back to reincarnation, which is a whole topic we could talk another hour about. Thank you so much, David. This was wonderful.

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