This episode is a must-listen for anyone who is facing terminal illness right now.
Whether you are a caregiver or a patient, Dr. Chris Kerr's wisdom may help you feel empowered in how you address the end-of-life experience.
Dr. Kerr's work has focused on affirming that end-of-life experiences are real and how the medicalization of the end-of-life process hinders one's ability to have "a good death" and also impacts the family who will be left behind.
Dr. Kerr's message is impactful because the extensive research he's conducted over the past 10+ years has created a positive impact in the lives of many.
How society approaches end-of-life needs to change and, it starts with education. Please listen and share this episode. Then, watch his documentary when it releases or read his book, and consider how end-of-life can be a beautiful, integrative experience. And, in the instance of terminal illness, it's not one that has to be feared.
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Victoria Volk 00:00
Thank you for tuning in to this episode of grieving voices. Today my special guest is very special. It's kind of feels like a big deal to me is Christopher Kerr, Dr. Christopher Kerr. He is the chief medical officer and CEO for the center of hospice and palliative care in Buffalo, New York. To date, his him and his research team at hospice buffalo have published multiple studies on the topic of end-of-life experience, over 1500 end of life events have been documented. And so that's what we were talking about today is end of life experience, but also his grave story as well. So, thank you so much for your time today.
Dr. Chris Kerr 00:42
Thank you for having me. Thank you for doing this, this is important.
Victoria Volk 00:47
So, can we start where your work is rooted?
Dr. Chris Kerr 00:55
Sure. Wait, how it began, in terms of medical sense, or more personally?
Victoria Volk 01:00
Dr. Chris Kerr 01:03
Yeah, I, I lost my father, when I was 12 years old. And the last time I saw him, and actually, he was certainly in a different place. interplanar place, and he thought that he was reenacting or re-experiencing what we did every year, which was go fishing. So, he was trying to get me ready, grabbing my shirt and such, saying we had to catch a plane because we're going north. But he was smiling. And that's the last time I saw him. So, I actually experienced what he ended up studying as a child. But when you lose a parent of 12, it's, you know, its obviously life changing and traumatic in ways that are hard to describe. It's not something that I openly talked about adults with at all, actually. What happened was, I inadvertently ended up doing hospice, which was the last place I was actually here trained to be a cardiologist in Buffalo. And I needed to moonlight more. And so long story, but because I had to carry a pager from cardiology, I couldn't work in an ER anymore. So, I was doing home visits for hospice, I saw an ad in the paper, actually, and started doing it. And it was really the thing that I, you know, there's this intense painful memory of my life earlier. Now I'm seeing at the end of life, as I'm caring for people who are dying, because no more sterilized medical environment. You know, there's a big barrier between you and the bedside. And you're you're knee deep and demonic in bureaucracy. And when there isn't a lot of dude do to the patient, you're less involved as a physician in today's world, but what I actually had to attend to them and be present, I'm seeing that this whole thing again. And, and, and I really never talked about what happened to me, as a child, I, as a young boy, where I lost my father, I had a very brisk and pronounced response. I. And I didn't mention his name alone, that experience. Now what happened was, I was given a TED talk. And by this time, I had already had all this research, and it was getting all this notice and whatever. And I was bothering me because it was just so dishonest, because I wasn't tying my piece of the story, right. And so I took a friend of mine who I trust out for lunch, and it's like, I got to taste them again. Here's the real truth. You know, I, this is how I came into it. Because these things kind of aren't random. And so then I just want I want to give a TED talk. I just told my piece of the story. So that was actually the first time I went out there with it but yeah.
Victoria Volk 04:07
I love the TED Talk, by the way, and I will put the link in the show notes. And so, the research that you've done, how many years First of all, how long did this take you?
Dr. Chris Kerr 04:20
It's actually a funny story. I guess it's been over a decade.
Victoria Volk 04:25
Dr. Chris Kerr 04:26
So, what was I did it because I was really pissed off. I had nothing to do with getting this kind of attention at all. I was trying to, I teach medical students and residents, and they're required to do rotations through hospice for a few weeks. And I was challenging, you know, that, you know, there's a sigh of die and you see this objective piece, but then there's the experience of dying. And what's it what actually the patient has experience. Sing and dine is unique in that it's changing your vantage point. And it makes sense of your perspectives, and your perceptions change dramatically. And this is just universal. It's been described throughout time that they people are having these very, very intense inner experiences. And you know, we live in this evidence-based time. And doctors are ever more discomforted by things they can't measure see biopsy image. And so, they might, the students will always say, you know what, there's no evidence for that. And I said, well, yeah, it's been talked about forever, but not evidence in the way they like to see it. So, I did the studies formally, and we went through a university process and an IRB approved study, people had to consent with a witness. They were screened every day. In participations, we'd approach patients every day until death, about these experiences, we had to rule out that they weren't confused. And that sort of thing. And we filmed actually, interestingly, only because we were trying, we knew that you had to see it to believe it. And people would make assumptions about these patients that they were feeble minded or confused. And it made them look like you and I. And in the film, ironically, it was meant for a medical audience is now part of this full-length documentary. So, it's funny how it turns out. So anyways, so I did that for a medical community. And, you know, now we've published probably eight papers, and they always get published, but you don't hear a lot of noise, but, and then what happened was really, really weird. and ended up seeping out to the nonmedical community. Starting six, seven years ago, and honestly, we have never been able to keep up with it. Ended up on the front section, the science section, The New York Times, Washington Post, the Atlantic Huffington Post, two or three times, Scientific American Psychology Today, but then ended up going around the world. It was Indian China, Germany, and it just, it never seemed to stop Korea. So, it's, the point is, and it's a sad point is that what didn't resonate with the medical community, the people providing the care resonates enormously with the people receiving the care. And it's the best part. But the TED Talk isn't the TED Talk. It's the comments. And because the comments, people have never had this stuff, really properly validated for them, and allows them to share their stories. And they're really there. The I think the comments section is more interesting. But so, it's been very interesting. There's been a framework for this discussion. And it resonates with people, and it doesn't seem to stop. So yeah, that's, that's how it all happened. Yeah, I can do one thing, and this thing just kind of went out of control.
Victoria Volk 08:08
Do you get a sense that people I mean, obviously, people are just kind of thirsty for this?
Dr. Chris Kerr 08:13
They are, they are. And what we did that was really, really different was it was very, very important. As everybody who has done this historically, has used it as a keyhole into the afterlife. And then that gets you into a camp that's paranormal, religious afterlife, or whatever. And we didn't do any of that. All we wanted to do was capture what the patients were telling us in the dining experiences, what they were experiencing, without extrapolating or editorializing or assuming and we just left it at what it is. And we knew that would have more appeal. Because you're preaching to the choir in the paranormal world, right? And we just didn't want to do that we the idea is that dying is a mystery unto itself, period, without having to go into reincarnation, or, you know, I have no idea. So, we just kept it on point.
Victoria Volk 09:06
What comes to my mind is that, and there's a part in your book to where you say and speak. I didn't mention the book, but you have a book, it's called Death is about a dream, finding hope and meaning at life's and, and you mentioned a TED talk. You mentioned the documentary, you know, the surviving death, but then this is going to be a documentary of its own.
Dr. Chris Kerr 09:30
It is a documentary. It's been released next week.
Victoria Volk 09:34
All by itself? Yeah, the title, and it's titled death is about a dream based on our book, correct?
Dr. Chris Kerr 09:39
Yeah. And then, and then it's in the rest of the country in April.
Victoria Volk 09:44
Can't wait for that. So, there is a part though, in your book where I have a note here and it's dying from loneliness to a life affirming connection. So, It's this dyeing process that takes you. It's like this life affirming experience. And you say it's for the dying as much as it is for the bereaved, can you speak to that a little bit?
Dr. Chris Kerr 10:12
So, that we see dying as a physical state and suffering lessening of the person. But what's missing that is that there's powerful processes going on from the patient's perspective. And they're remarkably comforting in a remarkably life affirming. And so, what we did in our studies was ask them what they were experiencing, we even looked at dying as post traumatic growth. And this idea that you can be within a negative experience of going to war, but there were gains. And what we found was really remarkable, right up until the last day, people who are having these experiences are gaining insight and understanding and adapting. So, there's this paradox where you are physically declining, but spiritually, psychologically, you're actually growing. And the direction actually affirms the life you lead, because the end-of-life experiences focus on very, very specific things, which most notably is the powerful relationship she cured and unconditionally are full of love. So that you end up feeling better and in process and kind of lessen the fear of dying. The breed pieces is interesting, we have studied, surveyed and interviewed 750 people. And it's just this old adage, what's good for the patient is good for the loved one. And as as, as a brief person, you can view death as decline towards nothingness, and emptiness, and, and loss. And what you find is actually, there's, there's lots of this connectivity between what the person's experiencing and what how they relate to the breed. So, an example for is, you know, to parents or to to a couple who have been together for 16 years. And they lost a baby 55 years ago, by the end of their lives, you know, she's re experiencing the child, you know, holding a child or what have you. And now the spouse is looking at his partner, and that completely inverts dying as a as something more than empty, but actually rich with love, and and how we see a person die. I mean, when you're walking at the bed, at the bedside of someone who love your concern beyond their physical comfort is where were they and how are they? Are they Okay, when their eyes are closed? And what the data shows is they are, and they're not alone. And we've actually looked at, we've taken grief tools and measured grief processing. And this absolutely does help them in the green in the briefing piece. You know, knowing that the person you love is reacquainted with their lost mother. It just pulls it all together in a way that that it's provide source.
Victoria Volk 13:21
Now I can say from experience when my dad was dying of colon cancer. I was eight. Well, actually, he was sick for two years prior to that. But that experience wasn't mine or ours, because it wasn't something that was talked about in the late 80s. Obviously, how has this work, helped you heal from your own loss?
Dr. Chris Kerr 13:46
We were in a similar era as children losing parents, and I not so sure it was done well, we, we still do treat dying as a as a medical problem to address resolve when it's really about a closing of a life. It's not about a failing body part that's over, you know, when someone is past treatment and everything like that. People don't die in parts. They die in totality. And totality of life is defined mostly by the relationships. So, medicine takes something what is ultimately a very human experience, and they sterilize it into something that isn't and you know, working in hospitals for 2122 years is, is interesting because families still will come in here, their loved ones weeks before died. And they're talking about test results for imaging. And you know, it's absurd. It's almost a distraction to the experience of end of life, which should bring people together dying as lonely as it is when we medicalize it like this, and particularly what probably your eye experiences were not actually brought closer to the person inadvertently were brought farther. And I think that complicates bereavement terribly. Actually, no, it does.
Victoria Volk 15:12
There is a note I have here to medicalizing the process of the dying. Can you go a little bit more into depth on that?
Dr. Chris Kerr 15:20
Yeah, I mean, it's a complicated story, but we have a healthcare system. It Well, first of all, the economy of healthcare is completely based on doing things to people. You get world class interventional care, as long as you're considered treatable, and then you fall off a cliff literally, when you There's nothing more due to you, we have actually over medicalized that, and deprived it of its humaneness. And we've inadvertently made it more lonely. And then we're shocked we we did we I think we we do we complicate bereavement terribly, because we talk about somebody who's on an obvious dying trajectory. So there's always something you can do to them. Just one more thing, then we'll take another picture next week, when really, there's a lot of data on this, particularly at tertiary so high end, medical centers actually have less don't add to mortality they, they take from it because this idea of medical futility doesn't seem to matter. So, they take people who have clear terminal trajectories, but they keep it going. It's hard to put into words, but basically, I've been doing this work for a long time, third of our patients are in hospice for seven days. And that's a national number. And the hospice benefits for six months. The reason why most of those patients are in for seven days, is because the doctor talking to them hasn't had an honest conversation. And there's this enormous discrepancy between what the physician knows and what they actually share. And the more doctors that are involved in the case, the less they actually know. So nobody's surprised. Like if you're a physician, you find out your patient with advanced cancers died, you're you hear about it, you're not surprised, you probably didn't tell the patient family when so there's not a lot of information shared, I always tell tell the story, we live in a by a major Cancer Center. And I can tell you, the people who come into our hospice facility here know where to park their how much it costs to get a coffee there, but they don't know when or how they're going to die. And it's actually not that difficult to prognosticate. But people just don't have the discussion. So we're left traumatized because it's treated dying in a medical environment is treated like an acute. of that. The only thing that's acute is the sudden awareness, and ability to finally tell somebody, a lot of our patients, this is sad, end up making their own call to come out into hospice out of desperation. And imagine the courage that takes when the doctor could have helped them in the transition. So nearly, you know, almost a half dying people visit an ER and in the last one to three months of life, because that's the only place they're recognized. But it's um, yeah, it's an absurd, absurd, we'd become evermore death denied.
Victoria Volk 18:33
I would agree with that in the work that I do with grief recovery.
Dr. Chris Kerr 18:37
Well, what you what you see on the bereavement side, which is a whole other topic, which I we're doing some work on here, you'd be very interested in is this notion of medical harm. I have a theory that we complicate bereavement, because we we we don't help well enough loved ones come to the understanding that this is where their loved one is at. And we don't have honest conversations about what the dying process is going to look like, what their loved one is going to need in their care. And so what we do is, there's a void filled by Nolan's and the family tends to assume the worst. They're just crippled with fear, for pain and all these symptoms that are really 99% of time easy to manage. But we don't have those discussions. So, there's a lot of data on prognostication, but in general, doctors get it wrong, and they over prognosticate by a factor of two to three. And what that does, is yes, interesting. You should look it up. How accurate are doctors’ prognostic? And because there's huge implications for braven because it, losses enormously. It's one of the biggest challenges you'll face in your life is the loss of somebody you love. So, So you can either be brought into that openly and honestly, and process and adapt, and address and all those things. Or you can be all the sudden faced with this brutal reality and an injured, and it complicates how you recover. So, doctors inadvertently do a lot of harm by not being honest. And we're constantly pulling out people from the hospital who are, you know, there's no chance in hell they're living, but they're still in this process of acute medicine under the illusion that they're going to do well. And as I said, the iria, as you go to the highest medical centers of the world, they actually live less law for all the processes. So, it's actually the inversion.
Victoria Volk 20:51
And what's the quality of that life that's left. And that's the thing.
Dr. Chris Kerr 20:57
The data until recently is very interesting, which is the vast majority, 70% of Americans want to die at home. 70% of Americans don't. And that's really interesting. The, that's changed, particularly with COVID. Because people are fearful of going into hospitals and facilities.
Victoria Volk 21:16
And my dad passed away in the nursing home, living in a rural area where we do, there isn't actually access to hospice. My mom cared for him as long as she could. She just felt like he needed more than what she could give him medically, right? Because there was always this hope, of something working or something helping or, you know, take his pain away, or anything like that. And I haven't thought I thought of a question. It might be really deep. I don't know. But do you think that there is like when I think about your work and the work that you've done, and I think about how, you know, some people want to just die suddenly, like, they don't want to know what hit them. I think there's a beautiful gift in having the gift of time, that knowing that you have this diagnosis, you know that there's a book and you don't know when, but that you have some control over how you live the rest of your days. I think there's a gift in that. I'm curious what your thoughts are on how people have, like people that have been in your care? Do they regret the suffering that they've had to go through to have these experiences? Or? And I don't imagine they do, but I don't know, maybe I don't even know how I'm asking this but.
Dr. Chris Kerr 22:49No, I haven't met the person. I haven't met the person that didn't want control of their own life, even in the face of death, that didn't want to be informed. They didn't want to be protected or denied in their own realities by somebody. I've never met the person. You know, it's funny, because people think, oh, you know, they don't want to know, they actually all want to know, it's their bodies, their life, it's not working the same, they can stand up anymore, you know, there's an inch, there's intuition, just, they're, they're in that body. So, the denial actually is harmful. So yeah, they want to know, and they need, they need to close their life, there's things they want to say this people they want to connect to. And there's beauty in a lot of it, because it reduces our relationships to what matters. So, you're stopped worrying about your tax bill, but boy, you want to hold that grandchild, like there's richness in it. It's part of an understandable process is less about, again, the organs not working here and there, it's really about, you know, dimming the light on your life and reflecting and validating who you are, knowing what you've lived for. And generally, what happens is fascinating. So, when when we don't have a perspective on this, because trying to understand the dying person's perspective is too big of a reach. But I can tell you a few things happen is that at the time of diagnosis, there's obviously all that trauma. And it's very self focused, you know, as it should be. What happens when people realize they're dying, their concerns, go to others. And that's a very, very important part of dying. It's all these gestures and love given and things that the people they care about, and they should never be denied that opportunity. It's really, really important part of this kind of letting go idea. Is that they can reconnect with people they love. It's, again, it's this idea of almost being put back together before the end. And it really matters. And sometimes it's just to be forgiven or to forgive. Sometimes it's just express love or to remember. But it's reconnecting and reuniting. It's less of a dismantling process dying than it is putting back together process. And it's it's all of that is good stuff that affirms life, and it doesn't deny life. So dying is interesting, because, you know, we try to protect the dine from their own experience in a way, when really, we should be engaging with them in it. You know, I, we used to do this more naturally. But we've again, we've taken the medicalization of it, to the point that we focus on a medical paradigm of medical paradigm, rather than a human one and they're very different.
Victoria Volk 26:06
I interviewed a woman who has had metastatic breast cancer for 17 years. And, you know, she said, well, I'm considered an outlier. And there's another woman in her group that she's a part of who's lived with metastatic breast cancer for 25 years. And, of course, it wouldn't be from, you know, it's Western medicine is obviously a huge contribution to their extended time. There's also hope. And so, do you feel like in the work that you've been doing is it because they come to you, it's usually closer to the end, like they've not given up hope that they, maybe it's been transformed for them, like, you see, in the work that you do?
Dr. Chris Kerr 26:54
Yeah, I don't see people. Hope doesn't ever go away. And what you hope for changes. And so, when you're in the struggle with your disease, the attitude should be always hoped for the very best, like, you know, an unusual recovery or protracted life, but also prepare for the worst. That that duality of approach is really the most graceful way through these kinds of illnesses, is you don't deny the fact that, you know, this could go the other direction, but boy, I hope and fight like hell, that you know, you're going to live and live well. The people that I take care of their hope, actually, I think in some ways is stronger. But they're hoping for something else, they're hoping for a peaceful end, they're hoping for dignity. They're hoping for autonomy, they're hoping to reconnect with people they love, they hope to have the opportunities to say what they want to say to who they need to say it to, it becomes much more of a giving gesture than it is worried about, you know, if you're unloaded, if you're unloaded, have that whole stress and weight of survival or not. And you've already kind of crossed over how it changes people's paradigms thought is really fascinating. But hope is still there. It's just hoping for something else. I love that. That's why people you know, I'll tell you, it's interesting. He was I talked about this in the end of the book, but one of the more interesting things, when we first started writing the university or pill university to the states were denied. Because, you know, we want to sterilize the dying and put them on a shelf and don't interfere with them kind of thing. You know, which is actually the worst thing because they're dying is lonely, and they were locked into a white ceiling. And so what's fascinating is that everybody in that book is who they are. And in the film, and not one person who was approached and denied to participate. That's a hell of a lot of people between the film and the book. And, and they're telling the real stories of their lives, like the hard stuff. And you've got to ask yourself, okay, well, there's no secondary gain. Some of the people who are participate are literally days or a week from dying. And so why are they doing this? Why is spending their precious time and energy and, and it's because they're still human. And that means they still want to have meaning they still want to be heard. Still on have relevancy, they still want to connect. And that never goes, even though they're going to be dead. Like they know there's banality, but it's, it's part of our human condition that we it's defined by our ability to, to relate to others to discuss and to talk and to be heard and to hear back and that never goes away. So that there's hope in that as well. Hope that you matter and it's up It's really a subplot within that book.
Victoria Volk 30:02
Do you find or have you been contacted about from different places around the country? Because like I said, you know, hospice care is very difficult to come by, in a lot of places. Do you see that starting to change? auspices? Just the access to hospice care?
Dr. Chris Kerr 30:22
It's unfortunately, since I started, there were very few for profits. And like in New York, it's a it's, it's, it's licensed by the state, and there's only one in every county, there's 5500, or something hospices in the United States. Yeah, and one of the pros, one of the initiatives is to improve the access to rural areas. And I actually think it's going to happen more, we're seeing more of it because of telehealth, ability to meet people remotely, because there's just the practicality of having on call systems and access to people who are distant, but we're getting better. And there's a lot of incentivize, you know, grants and dollars on the table to do that, you know, the Paris systems now ask him, you know, how you're going to get to our members over here. And that's exactly what they should be saying.
Victoria Volk 31:19
Well, that gives me hope. Um, so the patients that have come to you for end-of-life care, the significance, I imagine you kind of spoke to this for the bereaved. And that's kind of where I'd like to take this conversation. Next is those who are left behind? Has it really shifted? Or have you seen shifts in people's perspectives about what they then want for themselves?
Dr. Chris Kerr 31:49
It's a great question. Yeah, not measurably, but certainly, anecdotally. Yeah, it's interesting, this is in the film, there's a number of people who speak very clearly about us. And more, what it does is it informs them of what, from the experience, they learn that their fear of death is last definitely. And I think that matters a lot, because of all the symptoms of dying, fears actually probably come close to the top of the list. And they they end up more with a faith that the story is not as bad as feared, you know. And that, that, that again, that really comes out in in the in the film really, really well. I actually think the family members are as movie as the patient's, not more so in some ways. It there's a lady in a film, for example, who, whose mother has very advanced dementia, and she's in a, Michelle Sony. And the weeks prior to her death, she's trying to escape all the time. But she's happy as can be. And what was happening was, the daughter would go and see her every day. And she was having these rich, meaningful dreams about her deceased husband. And they had this kind of fairy tale, marriage of love. And so what's happening, the dreams are so real during vivid that she's acting on. And she's trying to leave the building, because she's always think she's going to go past to get to the church, whether she's to meet her husband to get married. And this happened right up until like, the last days of life. So here she is. And this is the paradox, if at all, is that she's losing her life, but she's actually reliving the best day of her life. And it was in that mindset that she she died, that she was getting, she was euphoric. This notion of living again, with her the one she loved. So, what that does to the daughter is completely changes her perception of loss.
Victoria Volk 34:08
It gives them an opportunity to open up that conversation I imagined because otherwise, would that have happened, you know?
Dr. Chris Kerr 34:15
Right, because people tend to need permission to have these sort of conversations. And you're right. Yeah, it does wouldn't happen. Yeah. You don't know or would you just be medicated? Which actually happens a lot? Yeah. Good point.
Victoria Volk 34:33
So, what would you tell somebody who is watching their loved one suffer and they're not sure what to do? They What do you advise people?
Dr. Chris Kerr 34:46
You don't have to do this alone. First of all, most of America you can get help. And it's specialized help, which is hospice help. I worried that people in the caregiving Fascinating, and that people will describe it as the best harvesting you've ever done. So, there's great human value in stopping your life and becoming the character. But it shouldn't be done as though you don't, you're alone with it. And so getting help, like hospice, which was designed for the home, is really, really, really advisable. And again, most people in the nation have it, you know, in terms of this kind of work, it's really giving people permission, you've got to almost give them a framework, the idea that this happens, you know, the people nearing the end of life are their sleep cycle changes, the architecture of sleep changes, their level of alertness changes, dying is progressive sleep, nobody dies awake, and it you know, it's really two things, you eat less, and you sleep more. And in that state of sleep, a lot of people have these very intense experiences, and don't be afraid of them. That doesn't mean it's drugs or that their diseases God with their brain, and ask questions and allow it to occur, give it the space to occur, because it provides comfort and meaning, you know, nearly 90% of our patients, if you follow them daily report at least one event. But it's not it's with has value.
Victoria Volk 36:24
As a teenager, I worked in a nursing home. So obviously, a lot of people pass away and things and they never really talked about or explained or you don't really get educated on the process of the dime, you just kind of learn on the job. And one of the things that really stuck out to me, and I still remember and I saw it too. And when I did home health, because there was a few, I had some, some clients that were on hospice at home. And they do this thing they call it picking now, I don't know, maybe you can clarify for me, but what is actually happening when someone is, you know, reaching into the air?
Dr. Chris Kerr 37:02
So, it's a great question. It's a whole area of interest in my so there's, it was actually, those actions were actually named by hip hop Hippocrates. So, it's always been known. And basically, what happens if you take somebody who goes into delirium confusional states, it's often because their sleep cycle is is complete disarranged. And it for example, if you went to bed tonight, and I woke you up, every two hours, with three or four days, your dreams would become very intense, and certainly become virtual. So, in a nursing home, it's universal, you'll see it particularly sundowning hours, because as to do with our day night cycle, you'll see people either looking right through you, or grabbing for things, or playing with their sheets, or wind to get up. And because they're in their dream, their participants in their dream. So they think that things in front of them. The dreams are normally you don't normally dream, you're just lying still, you're doing something. So they'll say they've got to get up. And that's why a lot of elderly people fall in the night. I've seen people that legs not forget, they don't have legs, because they're dreaming of something when they were younger, then they get up. So those are the those are very, very common things that happen in delirium, or confusional states.
Victoria Volk 38:36
So, it's not part of the dying process?
Dr. Chris Kerr 38:39
No, no, although a lot of people who are dying, become delirious, but typically towards the end. And oftentimes, because there's unmanly symptoms, and it could be something just like constipation or nausea. When you imagine you when you have the flu, the one common denominator of all illness is this poll to go to bed and to sleep. You know, you don't go climb a mountain, you go, I just want to crawl under the covers, and I want to sleep. And then something interferes with that sleep. Anything that sets the stage for confusional states. So let's say you got the flu. You ever had the flu? And you want to go to bed and alarm clock goes up every hours. Have you had a child? Have you ever been postpartum and you're gone days without sleep and you're hearing the noises and the baby cry, whatever, and you're pretty close. Now you imagine you're at and you have that level of sleep disruption, then then they get confused. It's why it's used as a form of torture and more. Just keep waking somebody. They'll everybody will get confused. And one of the pieces of confusion. As that dreams become your in your dream, and the themes become horrific, the worse it is, just like your mood becomes worse with one night's missing one night's sleep. Now you're, you know, four and five, and then you know, you think there's a fire somebody is robbing you, you're paranoid of the person giving your care. So that whole dissolute dissolving of the mind is very, very tied to sleep. And they're basically dreaming with their eyes open when they're doing those things. It's why very nice people can become combative in a nursing home. And tragically, they often need to be taught tied up, why you try keep elderly people out of the hospital, you keep them in their home, that they can live a lot longer. As soon as you put them in the hospital and you start waking them up in the night, then they can't go they end up confused.
Victoria Volk 40:56
That's fascinating. I never really thought of that. Yeah, I never really thought about that. But yeah,
Dr. Chris Kerr 41:02
yeah, you take you take an elderly person who can put themselves in context, because everything's familiar. They know where the nightstand is. And then they go to a hospital. And then they have somebody wakes them up to give them until they wake up and they're disoriented, and they're not sure. Where's my nightstand? And so that, that's untain them. And I'm caring for my mother. No, no, they're Ontario. And she's 88. And you have to be very careful waking her up, because it takes a lot for her to put herself back together. And she'll ask questions, why are these people in the room have done it? I know, 10 minutes later, she's funny. But sleep is a is really the fifth vital sign for elderly people. And if you don't protect it, well, you can confuse them off.
Victoria Volk 41:50
Interesting. Thank you for sharing that. Its very helpful. I think for many listeners, who are the caregivers, and their loved ones right now.
Dr. Chris Kerr 42:00
Yeah, our alarm goes off about sleep more than anything else. Because as soon as you have an elderly person who's starting to have fragmented sleep, you're, you're they're there, it's going to be very hard to keep their mind together.
Victoria Volk 42:17
So where does this? I mean, it's been a long time that you've since you've started this research. And is it starting to morph into another area of interest for you?
Dr. Chris Kerr 42:28
Yeah, you know, we didn't want this to go away about five years ago, but that the momentum for it keeps going. So, we keep doing the work. You know, we and we've extended this right, we've looked at children who are having these experiences, and there's a child, there's a chapter in the book about that. We've done a lot of work, obviously, with the bereaved, and looking at how that's changed them. The next thing we're working on that I'm personally interested in is this caregiving idea. Because if you do what we do, you're just It's so inspiring to see. There's a really great story about what people how people rise up, and the strength and the courage to care for their loved one and really focus their life back to that pivotal relationship to how that influences bereavement in a good way, if they've been allowed to have the time to, to reconnect with that person. So that's the story we're trying to uncover.
Victoria Volk 43:33
And the first thing that comes to my mind is support, like the caregivers need that support. And I think that's lacking with a lot of corporate jobs, you know, the supporting the cattaneo person that is employed that supporting a caregiver, with time off or you know, things like that, I just think that that's something that's not really addressed quite yet. I don't think we're quite there and caregiver support yet.
Dr. Chris Kerr 44:00
And within the developed world, we offer as a country, far less than half any other nation in terms of assistance in the home. So, helping the caregiver be a caregiver. So again, world class care in a hospital, very little care at home, where you're actually going to live with your illness.
Victoria Volk 44:22
Right, and it's very expensive. I you know, the organization that I worked for, I'm not even sure what it costs for people for to have me come into the home, but I've heard things that it's very expensive, and it's out of pocket. And that's why people end up in the nursing home and things like that, because you just you can't afford home. Oh, no help. And so then either to as a caregiver as a as a child of a parent who's ill and sick and things like that you have to choose then, between your job, your livelihood, your family, Family and things like that. And that's why you see a lot of parents moving in, you know, a lot of these combined families now the parent moving in with the child and their family and yeah, yeah. And that dynamic too, there isn't a lot of support there. No, I would love to see your research expand into that.
Dr. Chris Kerr 45:22
Yeah. And we're, we're starting to film the people, as well as we're going along, because it just seemed to work coincide well with the first book. So, where we had the research, we had the film, and we had the book, and it all kind of came together in a big way.
Victoria Volk 45:40
And there's a lot of grief to that. Is there with when there isn't support, as well?
Dr. Chris Kerr 45:47
Yeah, the other thing we're looking at, and we're doing some studies on again, is this idea of the care before death, care of the family before death, how that affects grief. So back to our earlier conversation, if you were included in the process, if you were informed accurately, if you were given time, real time, not denied. And reassured? What does that do as opposed to being there in the hospital for a month, and then the guy says, all of a sudden, this is the end. And this idea of health versus harm, pre death, and how that affects bereavement. Because I see people who are homeless have PTSD, after these losses, after an extended stay in a hospital, they really didn't know. And they're still hopeful until the last 24 hours. And you know, there's a lot there. So how well are we caring for the loved ones of the dying patient? And you know, it's very interesting, because if you ask the patient, that's what their concern is, their loved ones. And particularly, you know, during COVID is obviously different, but people are so disconnected. People are saying goodbye over technology.
Victoria Volk 47:06
Yeah, I've, I've heard some really tragic stories about that, or it just feels so incomplete. I just want to read a little part here that ties into what you just said, it's in your book on page, inspiring the chapter on to those left behind, when the dying patient becomes absorbed in and then comforted by their end of life experiences, it changes the context of dying from loneliness to a life affirming connection. And this is a significant, this is as significant for the bereaved as it is for the dying. That was kind of that point that I brought up earlier. And I highlighted that because I think it is such a poignant light to make and that it is as much for the bereaved, like you said, as it is for the dying, and I've just reflected on my loss and my father and what he went through, and how he was denied that, you know, he was denied a good death, I would say, you know, I would call it a good death. I don't know, it just kind of makes me feel like, you know that the trade off is the suffering and maybe the pain, but like you said, That's manageable. And so where do you draw the line? And how do you assess that when someone to manage what they're experiencing, but yet ensuring that they can still have a lucid experience?
Dr. Chris Kerr 48:35
Yeah. I mean, it is a fine line. And the patient should direct it. And oftentimes, what is more a is they're tired, and no, no, I need to sleep kind of thing. But you just have to be a trade off between pain management and wakefulness. It's almost like a Hollywood notion of pain that you're going to need this huge dose of morphine and you're not going to be awake more. If you've managed pain properly all along, you've gained tolerance to those side effects of the drugs, typically people who are extraordinary lucid on huge doses of medicine for pain. But but but they didn't take it all, once one day, they took it slowly, and they got used to it like you with alcohol. So I don't think the two things are necessarily incompatible at all. It gives me hope to the people who hold off pain medicine, for because they want to preserve their cognition, their ability to be alert and think, actually do the opposite. Because nothing takes away your ability to think clearly and have a good mood than pain and not sleeping.
Victoria Volk 49:44
That's a good point.
Dr. Chris Kerr 49:45
So, if you were to weigh this, if you were to ask me this way, this done this for decades, the side effects of any medicine versus the consequences of unmanaged pain or nausea. There's no question. So, the interesting thing is people who decline that sort of treatment for pain medicine, you know, I don't want until the very end, they fulfill their own prophecy. They don't want to be confused. They want to be in control, and they become less able to do both. Because if you have unremitting nausea, and every penny, you don't sleep. And if you don't sleep well in the setting of sickness, you're miserable. And you start, stop, you start withdrawing from conversations and meaningful participation. It's harder to smile, or laugh or enjoying by or anything.
Victoria Volk 50:37
And you get delirious.
Dr. Chris Kerr 50:38
You get delirious. Yeah.
Victoria Volk 50:41
Yeah, that's a very good point, too. I absolutely love this paragraph. End of Life makes visible the kind of light that signifies introspection and reflection. And that goes on shining in darkness, even after grief is turned from a single event into a lifelong journey. It is a light that radiates far and wide and is felt when all language fails us. That's beautiful. I love that. That's beautiful. I particularly love to the story of Sierra, in your book, you just want to briefly share a little bit about that story on my audience?
Dr. Chris Kerr 51:18
Yeah, she's actually on film. That's all captured on film in the documentary. So very quickly, she was in her 20s and had a child. And she had undiagnosed colon cancer for too long a period of time, and was in our impatient of dying, but had was not accepting that she was dying at all. And just ask her when she's going to get better, so she can get back to the hospital, we get more more treatment. And we were frustrated, because we're concerned for the family who doesn't understand a child who wasn't getting the care he needed. And the doctor in the room is finally says, you know, see, are you having any dreams? And she scrolls grandpa. And meanwhile, she'd been dreaming of her grandfather. The Darcis was he say goes, because I've done a good job, you know, but but I need to stop fighting. And then I'm going to be okay. And that broke everything. And of course, there's this link between the mother that's her father has been referred to. And this idea that she wasn't wasn't alone in this process, and that she was comforting. And then, then there were more honest conversations about being actually at end of life, and all the offers, but the answers didn't come from us. It came from within her. Yeah, and that's on film. It's amazing.
Victoria Volk 52:54
I just yeah, thank you for sharing that. I just thought it tied into beautifully with that paragraphs that so thank you for sharing that. Is there anything else you would like to share?
Dr. Chris Kerr 53:04
No, it's been great. Good questions.
Victoria Volk 53:08
Thank you. Thank you so much for being here. If people would like to reach out to you, where can they find you?
Dr. Chris Kerr 53:13
Oh, it's Drchristopherkerr.com
Victoria Volk 53:20
Perfect, and I'll put everything in the show notes as well.
Dr. Chris Kerr 53:23
And it's good because there there's links to videos of patients and family so it's really good to see.
Victoria Volk 53:28
Awesome, and don't forget the book, death is but a dream. I will also link to that.
Dr. Chris Kerr 53:34
Victoria Volk 53:35
Thank you again for your time today. And remember, when you unleash your heart, you unleash your life. Much love.