A Hospice Doctor's View on Death - with Dr. Christopher Kerr | The Empowering Neurologist EP.97

Well, hello everyone. I'm Dr. David Perlmutter. Welcome to The Empowering Neurologist. You know, as I look around the studio here, I have all kinds of books dealing with all kinds of medical issues. There's Dr. Kelly Brogan's new book, Own Yourself. dealing with anxiety and mood disorders. Dr. Tom O'Bryan's Autoimmune Fix, dealing with autoimmune conditions. Books about nutrition as it relates to cancer, how we should treat diabetes, not just with medications but with dietary manipulation. All kinds of great different topics to explore. But, you know, the truth is that there is one situation that is going to affect all of us, and that is dying. We don't like to talk about it in our modern Western medical world where we are really tending to focus on fighting the enemy, and included in that is, of course, death. But we, you know, we recognize now that this relationship that we have with our own death and with the death of our loved ones is really quite at odds with the history of humans and certainly how death is related to in other countries even today. So we're going to take a look at the, the how we are interacting with those who are dying, I think, in a very empowering way today. Our guest is Dr. Christopher Kerr. He is both an MD and a PhD. He is the CEO and Chief Medical Officer at Hospice Buffalo. He received his MD and his PhD in neurobiology. That's right. And completed a residency at University of Rochester in internal medicine. His research has been featured in the New York Times, Atlantic Monthly, BBC, and he's got an extremely popular TED Talk, and we're going to have a link to that later in the program. He is a hospice doctor. What does that mean? It means that all of his patients die. Yet he's cared for thousands of patients who, in the face of death, are speaking of things like love and grace. And beyond the physical realities of dying are, as Dr. Kerr will describe, these unseen processes that are actually remarkably life-affirming. And these include dreams that are unlike, you know, regular dreams. They're described as being more real than real. And these end-of-life experiences resurrect things like past relationships, meaningful events in the life of the individual who is dying, and are peppered with themes of love and forgiveness. They mark the transition generally from distress to comfort and acceptance. The book that he's written is called Death Is But a Dream. I'm joined today in the studio by Lise Perlmutter, my wife, and I think you're really going to find a deep meaning in this interview. Thank you so very much for joining us today. This is going to be a very interesting conversation for our viewers, that's for sure. How are you doing?

Good, and thank you for having me.

Well, we're going to jump right in. Again, what we're going to talk about today is your new book, Death Is But a Dream. I guess that's the title comes from the row, row, row your boat. Am I right on that?

Yes. Yes. Okay. All good.

Um, as, um, You made a very important point multiple times early on in the book that medical training is really about defying death, doing everything that we can as physicians. I mean, the book begins with you during your cardiology fellowship and your moonlighting at a hospice facility. And I think, you know, can you walk us through how that— how you got your eyes opened to this real change in this appreciation of this experience that we will all have?

Sure. So both you and I share a background, um, and training, which really, uh, had a, had a one-dimensional view of dying, which was a very medicalized, uh, view and which really looks at organ failure. Um, and what that does unfortunately is obscures the non-physical elements of dying, the experiential pieces of that. And what happened was, um, I was in training, came to a hospice and you feel a little naked because you're absent any technical medicine at all. And, you know, you almost have this, this, uh, this approach that, what can I do to this patient or for this patient? And when you're left in that predicament where, you know, it, it, it's undeniable your patient is dying and there's nothing more for me to intervene on, um, that's when you, you're left with Uh, uh, uh, the need to be present and to start to work on your role as a comforter. And when you do that automatically, what happens to you, you're forced to recognize the human dimensionality of the dying process, the human experience of dying. And that's really when I got my eyes open.

I'm going to say something I was probably going to save for later, but I wanted to say right at the beginning that, um, Really honored that— to spend time with you and hear this story. Because, you know, we all have this training of death is the enemy, and at all costs, that's what we've got to combat. And, you know, look at the turn of events in your life, and then what you've done with it, and what you continue to do with it, not just in terms of your day-to-day work, but now in your new book. So, um, I'm sure I'm going to say this afterwards as well, but I'll say it even at the beginning of our time together. A lot of gratitude for you for doing this work.

Coming from you, that means a lot. Thank you.

Um, so we're looking at then the subjective experiences related to dying, and a lot is going on that I think many would discount. The dreams, the experiences, the visions. And, uh, tell us how that began. I remember at the beginning of the book there was a patient dying of HIV and the nurse, uh, knew that he was going to die because he was having these experiences that you were really having a tough time coming, uh, dealing with or embracing.

Yeah. The, the, what happened before that though is I was viewing him as a medical equation to solve. And I thought, uh, he was a young man and it was that time when people were dying. Of HIV-related complications. And I thought we could get him some more time by intervening with fluids and antibiotics. And she actually didn't even bother to look up. And she said, no, he's done. He's dying. And I said, well, why? And he said, well, he's seen his deceased mother. And it was really my non-physician colleagues who were actually present and at bedside and couldn't abandon their patients. who seemed to have this very sophisticated understanding for these sorts of events. And that's how it really, really started. And then what really happened is there were a number of pivotal cases. And as you remember, like Mary in the book, where it was, it was not just novel, interesting phenomena, you quickly learned how therapeutic it was for the patient. And that couldn't be ignored. You know, we have an obligation to, to, to, to heal even those kinds of wounds. And so here was this, this, these, the, this inert, this, this inherent process that was soothing people. And that's really what got my attention.

So, you know, we all hear the stories of, um, people having these experiences, having these visions and dreams, et cetera, seeing their parents, uh, for example, and, You know, some might say that there's a neurophysiological explanation for this, what with low oxygen tension or changes in some metabolic parameters that trigger, you know, almost a— just an engram activation. But, you know, from your book, it seems like one could ascribe some more meaningful interpretations to these things going on. What, you know, where can you take us on that?

Well, so, so it's really important. Vantage point is everything. When you tend to talk about dying patients, people have this automatically, this image of them in the last moments of life when clearly they have compromised function. What we're talking about though is patients who were enrolled in an IRB, a university-approved study. So you had to be cognitively intact. You had— it's no different than signing on to a mortgage. You had to have witness. You had to understand the implications. So these people, uh, were, were, were clearly cognitively, uh, okay. Um, the next thing we did is we ruled out for states of delirium. Um, so you— before we interviewed you, you would actually have to go through a formal protocol to be ruled out for delirium. Then probably the most important thing we did, which is really interesting, we knew that no matter what we would say, that That we couldn't do it justice, for one, but people would automatically assume these were people with frail and broken minds. And so what we did is we started to videotape them very early. And what you find out is they look and sound like us, even the children. Shoot forward, you know, 15 years, those, those film ingredients are now core elements of a full-length documentary and a Netflix episode. But at the time, they were really just used to prove a point to other doctors that no, no, no, this is real to them.

So, uh, you know, someone would say, well, this is in the realm of the paranormal. And is that derogatory?

Yeah, very much so. Um, it's really important. One of the problems of looking at the dying It immediately becomes fodder for other interpretations. They tend— people tend to look at dying as a keyhole into the afterlife. So it's ripe for interpretation. So if you come from a particular religious belief system, spiritual belief system, paranormal, afterlife, then that's how they're trying to view these experiences. What we were trying to do was not editorialize or interpret. All we wanted to do was translate the dying experience. experience onto itself as its own mystery without it necessarily heralding something else beyond. So, it's using the patient's words and putting definition about that without interpreting it beyond.

So, what does it mean when you say we die as we live?

What became very clear in our work is that this wasn't This wasn't, um, how you died was congruent with how you lived. It wasn't all positive, for example. So 17, 18% of our patients had very, very alarming and distressing dreams, um, consistent with the life they led. And, but what's interesting is those are actually some of the most transformative, meaningful experiences. So I don't know if you read about Dwayne in the book, for example, He was in his 40s. He was on crack or cocaine since he was a young teenager. And he had actually lived in prison more than out. And he came into our unit dying of head and neck cancer with open wounds. And he was actually a really upbeat person who couldn't afford to live in a regretful looking-back life. He had to survive. But here he is approaching death. And his dream is he's being stabbed at the site of his tumor. Um, and he, he tells us on film and really decompensates and starts to cry. What ends up happening though, he wakes up and he has this powerful need to be reconciled with the daughter, to say he was sorry for the first time and express how much he loved her. So it's this idea that, you know, we all have wounds for having lived, but they're often addressed and they're consistent with how we

lived. Let me ask you, um, you know, it just seems in, in reading this book, That it's only very recent that we have taken this medicalization kind of approach, or winning the battle kind of approach, to medicine in general, and certainly to the notion that we have lost this battle when patients die. But isn't it true that throughout the history of mankind, you know, that there has been this relationship with patients as they are dying and validation, or at least consideration of what they're going through as having some powerful meaning?

Yeah, well, very well said. I mean, I think what overmedicalization has done, without, by the way, changing outcome, is that it sterilized a very human experience. And our history is that it was actually a time for establishing, reestablishing connectivity, not disconnecting from it. And you see that in other cultures. And when it comes to this phenomenon of pre-death dreams and visions, it was actually a way to remain connected to people who had died before you. Uh, you know, even the Japanese have a name for it. It's called pickup dreams, basically, where someone's coming to pick you up. So it's, it's very much, uh, talked about in other cultures, really throughout history.

And what is then the value of these dreams at the end of life? What— how are they valuable both for the person who's dying and for the loved ones who are around him or her?

Well, multiple levels. One, the vast majority provide comfort. They validate the life that they led. So the important elements of having lived, particularly those who nurtured and loved you correctly and secured you, those are the ones who typically return. You're definitely given a sense of ease, sense of meaningfulness, a sense of being made whole. Whatever your particular need is, whether it's need to be forgiven or reunited, that seems to be addressed. I think in that process, definitely the fear of death lessens. It doesn't— these don't deny death. They almost transcend it. So it's very meaningful. We've looked at it in terms of post-traumatic— dying is a post-traumatic growth experience. What we've shown is you've got this paradox. You're physically dying, but spiritually and psychologically, you're actually making gains. You're gaining insight, learning how to adapt right up until the days preceding death. The value is immense. When you ask about the bereaved, we've surveyed over 750. We've published one, and another paper's coming. Absolutely, when we look at grief scales, it makes sense. How you view your loved one dying absolutely impacts how you process their loss. And that's actually measurable. Some of the best films we have actually are of the family members.

So, at the end of life, these family members really move into a place of peace with whoever is transitioning, as does the person, even if they have things that come up beforehand?

Yeah. You know, it's, um, and that's including for the demented. You know, we had somebody recently, for example, Whose mother was trying to get up— we're in Buffalo— whose mother was trying to get up and leave. She had advanced Alzheimer's. She's very nearing death. And she's trying to get back to Niagara Falls because she's reliving her wedding day, the best day of her life. And she's actually actively dying. Again and again, we see couples who have lost a child and their life partners and the ones looking at the bedside of his beloved spouse or her beloved spouse, and that person is cradling that lost child. So instead of emptiness and loss, you're also seeing meaning and a sense of recapturing a wholeness.

Can I ask, what have other hospice facilities done in response to your work? I mean, has there been incorporation, rejection, acceptance? Where does that stand?

Oh, it's fascinating. So we did this work essentially— it's a great question— we did this work to reach the medical world. I just— that was my only lens I was seeing things through. So we published studies in like '14, '15, got them successfully published, but I did not get a single reply from the medical community. What happened was it snuck out, somebody picked it up, and it ended up going to the non-medical community— New York Times, The Atlantic, BBC— and it went around the world. Which is really interesting because there's this, there's this significant chiasm between the people providing the care and the people receiving the care. Other hospice people, this is just part of their language. When you talk to a hospice audience, it's like preaching to a choir. And it's wonderful because they basically tell you stories. Um, everybody who does this work knows it's part of, it is what it is.

And now that your book is out and available, what have you heard from people who have read the book? What kind of feedback are you getting?

You know, it's overwhelming. I never actually sought out to do a book. What happened was I did a TED Talk and it received, you know, it's like 2.5 million views, but more importantly, it has over 4,000 responses. And what propelled the book was those types of responses, because what I found is that a lot of people had either witnessed this or were dealing with a loved one. And this was the first time it was validated with any rigor or placed in a clinical context or caregiver framework to give it some definition and meaning. So it's not uncommon to have people say, you know, I've always wondered what I witnessed 2 decades ago. It normalizes it essentially. You know, and last week I had a 50-year-old who's dying of ovarian cancer and just said, It changed her whole outlook on the dying process of what lay ahead. So it's really very, very touching.

But we, as North Americans in particular, we tend to just don't have a meaningful relationship with this life event, part of the continuum of life. That is, as best we know, going— something that we can all count on, as opposed to other cultures on the planet right now, as well as in the past. Why have we gotten so— why is it— why are we so distant from really embracing what's going on here? And it has become such a standoffish experience.

Well, you know, I think there's a couple of reasons. I think we're a We're a health-focused culture. It's undeniable. Everybody will do pretty much anything to maintain youthfulness. That's what's revered. It's revered in everything from films to whatever. I think that we've become somewhat self-ennamored with technical medicine, and we see this when we talk to our patients who really have a hard time grasping that there's no more treatment options, because there should be always something. So we have eternal hope in our ability to defeat death. So I think we defer it. We're all uncomfortable with mortality. We've just made it— we've just put it off to the fringes. And I think we've lost our way with dying. And truthfully, to reclaim it is to humanize it. And that starts with listening to our dying patients. And recognizing that medicine doesn't have all its answers, you know.

So, Chris, I'd love to ask you a question. How— you've done all this research, you've been around so many dying people— how has this colored your world, your life, and the way you see death?

Well, I, you know, I think the first thing is that there's an assumption that what You come and do this work, that we must be a depressed or depressing lot. And in fact, we're actually probably the most life-affirmed people you'll ever meet, full of laughter and warmth. I think what's lost is that if you're around this, people understand— people understand the tragedy and the trauma, but what they don't get is we're also so privileged to be part of the best of humanity. We see caregivers who are more selfless and have their priorities focused and courageous and giving. It's just remarkable what these moments do. Everything else pales if you think about it. If you have a spouse that's dying and needs you and you're in your 50s and 60s, it all of a sudden puts you back and you have to look inside yourself. And to be present and to comfort is a good human thing. So we, we, we're, we're witnesses to that daily and literally awed by it. And you come up with a more positive impression of who we are. It's, it really is.

It's interesting that you use the word awe because in our new book, we're talking about certain parts of brain anatomy that kind of underlie our behavior and our choices. And one of the things we learned is that the experience of awe, awe-inspiring moments, tend to help us wire to the more compassionate and empathetic prefrontal cortex. Yes. So I think it kind of goes both ways, that, you know, it's ultimately pretty darn salubrious for you to be doing this work from the perspective of building your— through neuroplasticity, building your empathy channels. So, uh, I

think that's, I think that's what happens. Uh, there's no way you can do this and not emerge a better human.

Well, let me ask you one. This is a stretch. Okay. On my question list. And that is with this incredible perspective you have of the dreams of people who are nearing death, has it changed your interpretation of Uh, and we could take this beyond Freud of what dreams in general mean in terms of people, uh, who are, you know, not at death's door, just for the rest of us.

You know, no. And I'll tell you why. Um, is the only reason we call them dreams. It's the only nomenclature we have. But a couple of things need to be clarified. When we gauge realism, it's off the charts. It's 10 out of 10. And if we're listening to our patients, the comment we hear the most is, you don't understand, I don't normally dream, or I don't recall my dreams, or this is different than any other dream I've ever had before. The other thing is when we ask them, did this happen during sleep or awake? 50% of the time they're saying it happens in both or during wakefulness. Yet it's not like you walk in the room and they're wide awake and having these experiences. The one commonality of dying is that you tend to be sleeping more. It's the kind of the common denominator. Sleep architecture changes, as do levels of alertness. So people are in and out of sleep, and stages of sleep fall to the wayside. So they may be lucid dreaming. So I'm not so sure. My point is, our patients are telling us this is more disliked than liked, any dream experiences that they've had before. And they seem to be a little more organized. And they also have some distinctive features. Very little is said between the dreamer and the participants, but everything seems to be understood. They actually struggle to find language. We videotaped— it's very interesting— with people at a loss to describe the impressions and the feelings they were given from being in these experiences. So I don't know what to— I don't know what to make of that. I just know it should be honored.

That's, I think, a huge take-home point. And that is that there is great value for all the rest of us to listen to what's going on as a learning experience about that individual. And as you well said, for ourselves as well.

Yeah. I mean, trying to fit it into some construct that we know from our vantage point of health, and really looking into an experience none of us have had, which is near-death. Um, it's hard.

And I think those dreams are so encompassing and so complete and so full that it's their reality. It's even more real than their reality here in this world.

Sometimes actually, that's what they say on the video is that this is more real than anything I've ever, ever experienced. It was more beautiful.

Well, you are an amazing guy, and

I really appreciate this. Thank you.

We're super grateful that you do what you do, and—

To you as well.

Extremely inspirational. What a course correction you experienced, and it's really just— it's very, very encouraging that people like yourself are doing the things you're doing. So This is really quite something, and I'm hopeful that all of our viewers are going to buy this book and read it, because it really is— it's something that sits you down and challenges you in a way that, especially, you know, us in the world of medicine need to be challenged. You know, we talk about our healthcare system has very little to do with health, and—

Yeah.

What's happened to the care part? You know, the care now is via a screen and a keyboard, and there's so little of that that's even offered anymore. And boy, you're bringing it right back to where it needs to be. So thank you for that.

You're welcome. If I could just make a recommendation, even if somebody doesn't buy the book, go to the author's site because there's videos. If nothing else, if you haven't seen the TED Talk, then at least watch the videos of the patients and families because they're really— it'll really recontextualize it for people. That's drchristopherkerr.com.

Okay. Again, we'll put that up as a graphic. At that site, then people can link to videos?

Yes. Yes. Awesome.

Wow. You're the best. All right. Listen. Thanks for your time.

Thank you, you guys.

Nice to meet you, Chris.

Nice to meet you. I've heard lots about you. Good to meet you. Thank you.

Bye for now.

Bye.

Well, I'm glad we had this interview. I'm glad that Lise could join us. It's something that needs to be talked about. Great meaning in the words today from Dr. Kerr. Again, his book is A Death Is But a Dream, and we will, of course, you'll see in, in the interview the link to his site where you can then link to many videos that he's done. I hope you enjoyed our program today. I did. Thanks for joining me. I'm Dr. David Perlmutter. Bye for now.