Death Is But A Dream - Transcription

 

[applause]

 

0:00:56.2 Chris: So I read a recent survey and the title was "What Americans fear most: Public speaking and dying." In other words, my TED Talk.

 

 

[laughter]

 

0:01:10.3 Chris: So, tonight I'm gonna share with you the words and experience of dying patients, and my hope is that you hear what I have heard, the dying often describing their end of life in ways that are actually life-affirming and rich with meaning, love and even grace.

 

0:01:32.0 Chris: So can we talk about this dying business?

 

0:01:34.2 Patricia: Yes, my favorite subject.

 

0:01:36.4 Chris: I know. Because you've always wanted puzzles, and this is probably the biggest puzzle you've had.

 

0:01:42.4 Patricia: Yes. Well, I call it an adventure.

 

0:01:44.7 Chris: An adventure.

 

0:01:46.4 Patricia: Just like I said before, what's over the hill? And I'm very, very impatient. I'm learning it, I always was...

 

[laughter]

 

0:01:53.9 Patricia: I always wanna... My husband always say, "You'll never enjoy the moment because you're always looking, what's gonna happen next?"

 

0:02:00.1 Chris: Yeah.

 

0:02:00.4 Patricia: And he learned to live in the minute... Yeah, in the time, and I'm learning it too.

 

0:02:03.5 Chris: Do you have any questions you wanna ask me about...

 

0:02:05.4 Patricia: Yeah, when am I going to die? That's my main focus.

 

0:02:07.8 Chris: I'll come back.

 

0:02:08.5 Patricia: And you know, you don't have to tell me.

 

0:02:10.0 Chris: No, I would tell you. I'll tell you straight.

 

0:02:12.9 Patricia: Really?

 

0:02:13.1 Chris: Of course.

 

0:02:14.0 Patricia: Okay, you're my friend for life.

 

0:02:15.3 Chris: Yeah, no. I work for you and that's one of the things that we do, is have open and honest discussions about where you're at in the process. And it sounds as though there's a trend of decline if you look at it. So we tend to think about... Death is a moment, but dying is really a process.

 

0:02:39.4 Patricia: Yeah, I've seen it.

 

0:02:39.6 Chris: Yeah, and you're in it.

 

0:02:40.7 Patricia: Very interesting process.

 

0:02:41.9 Chris: Yeah, and you're in it and it doesn't hurt. The hurtful part for people in dying tends to be the psychologic piece and you got that licked, you're on the other side of the fence. And truthfully, that's what most people do. And it's not necessarily pain over the prospect of life ending, it's often pain over the life that was lived, regrets and things like that. And you've had a life with loss but that's been full of love.

 

0:03:17.7 Patricia: And I don't have a lot of regrets.

 

0:03:19.6 Chris: No, you've done it pretty well.

 

0:03:22.2 Patricia: Thank you.

 

[music]

 

0:03:42.3 Chris: The dreams you have.

 

0:03:44.2 Speaker 3: I would say a month or so ago I have had dreams of family. Dreams of family going on picnics and doing the things that we enjoy doing as family.

 

0:04:02.3 Chris: Yeah. Are any of them alive?

 

0:04:09.3 Speaker 3: No.

 

0:04:12.8 Chris: Do they feel real?

 

0:04:15.6 S3: Oh, yeah.

 

0:04:17.0 Chris: Yeah. It's actually a happening thing.

 

0:04:18.2 S3: It feels like it's happening.

 

0:04:19.8 Chris: Yeah. When you wake up, how do you feel?

 

0:04:22.1 S3: Good.

 

0:04:23.1 Chris: Good. So it sounds like it at least gives you a lens on which to view your life as very fortunate.

 

0:04:31.7 S3: Yeah. Maybe that's it, maybe it's just looking back at my life and saying, "You've been pretty lucky in that."

 

0:04:39.4 Chris: [chuckle] That's wonderful.

 

0:04:40.4 S3: You've had a pretty good life.

 

0:04:42.0 Chris: Yeah.

 

0:04:43.2 S3: The only thing I regret is I don't really wanna leave this life.

 

0:04:51.4 Chris: Yeah, you're not done.

 

0:04:52.7 S3: I'm not done. Yeah.

 

0:04:53.8 Chris: So we came in here just to grab a picture, and I think I've had the best conversation that I've had in a long time. [chuckle]

 

0:05:00.4 S3: Thank you. It was so great talking to you.

 

0:05:01.8 Chris: Now it makes sense why you're a reader.

 

0:05:03.6 S3: Yeah.

 

0:05:04.7 Chris: You're thinking hard.

 

0:05:05.9 S3: I'm glad that you're doing this.

 

0:05:08.8 Chris: Thank you.

 

0:05:09.7 S3: Thank you for coming here.

 

0:05:11.8 Chris: Thank you, bye now.

 

0:05:12.8 S3: Bye-bye.

 

[music]

 

0:05:23.2 Speaker 4: I was here a couple of years before Dr. Kerr was, and I had to learn all this process and people would say about dreams and patients seeing loved ones and all these kind of... And I'd go and I'd say like, "Really?" And you are, you're skeptical because you've never seen it, you've never heard of it until you started working here and you started to see that once these patients started having dreams and seeing their loved ones, it's almost a precursor, "Okay, I'm coming. Give me a couple more days." Or the loved ones would say, "It's okay, you can come. I'm here for you when you're ready."

 

0:05:57.1 Speaker 5: There was a young patient who was dying from complications of HIV. And I thought that he would have some more time if we hydrate him because he'd had profuse diarrhea and maybe some antibiotics. And I went in to the nurse's station and I kinda made this declaration, "I think he has more time and we just need to do these things."

 

0:06:17.6 Speaker 4: He said, "Oh, we gotta get Mr. So-and-So, he's doing good. He's sleeping, he's eating, he's in a good frame of mind. Maybe he has some time that he needs to go home."

 

0:06:26.9 Speaker 5: And Nancy, without even looking up, said, "No, he's dying." And I said, "Why?" She said, "Well, he's seeing his deceased mother."

 

0:06:35.9 S4: And he goes, "Yeah." I said, "Well, were you aware that these last day or two, he's starting to see his loved ones in his dreams? And even while he's awake, he'll see them in the room." And then he goes, "You really believe in that?" And I go, "I wouldn't have never thought it if I never worked here, but yes, I do."

 

0:06:52.4 S5: I thought that was the craziest thing I'd ever heard.

 

0:06:56.4 Chris: So you never heard anything like that?

 

0:06:58.4 S5: No, no way. No.

 

0:07:01.1 S4: So he says, "Okay, we'll wait a while." So then, make long story short, he stopped eating, he wasn't as aware, and by the end of the third or fourth day...

 

0:07:11.1 S5: He died. Nancy was right. Everybody seemed to know the joke was on me that this stuff happened. And that when talking to social workers and everybody, it was just... They just had this... They just all knew. But I didn't mind that she was so right, I had more trouble that I was so wrong and obviously had blind spots, and then there were a number of pivotal cases that really... They were undeniable that I was really forced to re-examine. I think what really changed it for me was that it became immediately clear how therapeutic this was, and really, if you were assuming that responsibility to be that person's doctor, to not embrace this, understand it, explain it, translate it, potentiate, whatever, I saw this gap in care that was immense. And really, I had to reinvent myself because all the normal things you do as a doctor are gone. I needed to get in the game.

 

0:08:31.1 S5: It's obviously draining doing this sort of work, and so I live on a farm and that's where I am. I don't spend much time indoors, I don't sit well. Horses have always been central in my life than being outside to this day. I fed my piglets with my one daughter this morning, and I'll work with the horses with my other daughter today. I don't even know if I could really define self-care, but I think that inadvertently for me becoming put back together again means being out in nature and with the animals.

 

0:09:21.4 S4: There's a scene in Good Morning Vietnam when Robin Williams is on the truck and he's passing, and there's a look on Robin Williams' face when he sees those guys heading in that it's just... It's like I can't even watch it sometimes and that's the look that I see in Chris when he's at the bedside with somebody, it's just...

 

0:09:42.0 Speaker 6: Chris, he's a man on a mission.

 

0:09:47.0 Speaker 7: We always joke about work-life balance. We're very big on that, like, play hard, work hard, things like that. For him, it's just full-on integration, he lives this stuff.

 

0:09:58.0 Speaker 8: He comes bearing into a room, you know he's there, he's making himself heard. It just adds extra spring in my step. I think we all kinda like that.

 

0:10:08.8 Speaker 9: And Chris is all about just big ideas.

 

0:10:12.3 Speaker 10: Wonderful, huge ideas, we're the detailed people.

 

0:10:15.8 Speaker 9: What are the next logical steps of doing this?

 

0:10:17.8 Chris: What barriers might come up?

 

0:10:19.0 S9: Chris is like, "Steps? What are you talking about? Just do it."

 

0:10:21.1 Chris: He's like, "Oh, don't think about the barriers. Just do it."

 

0:10:23.6 S9: I would have to say that I have not met a individual that is so compassionate, such an advocate for people who are going through death and dying.

 

0:10:34.4 Speaker 11: Beneath all of those layers of humor and irreverence, there's a sensitivity and an intensity with which he looks at you and listens to you and retains everything about what you are telling him. Anything that you deposit into his mind and his heart is gonna be cherished.

 

[pause]

 

0:11:10.9 Chris: So I think it's pretty undeniable that we've lost our way with dying over time and I think people are right who say that it's become easier to live longer, but actually harder to die well. Modern medicine has unintentionally dehumanized and sterilized a very human process. Someone wrote that death in a hospital smells like an industrial accident, and I think that's unfortunate. For many people dying is isolating, and they're lonely and maybe it doesn't have to be if we were able to attend to the actual experience of dying. I think their words matter and I think they need to be heard.

 

0:11:53.5 Speaker 12: In terms of how do you take a subject like this that's so dismissed, that's so obtuse, that's so wide, that's so open to interpretation, how do you present this with any kind of scientific rigor? How do you not have this as an article in a grocery store magazine versus in a medical journal? It wasn't until our research group, we decided to directly ask the dying individual, "What are you dreaming about? Who are you dreaming about? How often is this happening? And what does it mean to you?"

 

0:12:27.2 Chris: Next, we really wanted to establish objectivity. Again, we want the patient's perspective without the influence of interpretation, be it paranormal, religious or the after life. We were interested in what happens before death without speculating on to what happens after.

 

0:12:42.8 Speaker 13: I think for us as a team, we're not so much concerned as to the source of these dreams, but the fact that these dreams are happening, that this is part of the human experience that we shouldn't dismiss or deny what these dying people are going through.

 

0:13:00.8 Speaker 14: I feel like that's the story that we need to tell. People will realize how prevalent it is, how normal it is, and how easy it is to just ask the simple question like, "Are you dreaming?"

 

0:13:28.7 Chris: Tell us about the dreams.

 

0:13:32.2 Speaker 15: It's very hard to pinpoint because they were so real. And all these years my husband's been dead and my daughter.

 

0:13:41.2 Chris: And when did your daughter pass?

 

0:13:42.7 Chris: Seven years ago.

 

0:13:45.8 Chris: Okay, at the age of 37?

 

0:13:49.1 Chris: Mm-hmm.

 

0:13:49.2 Chris: Okay. And your husband died?

 

0:13:51.3 Chris: 61.

 

0:13:53.1 Chris: 61. Okay.

 

0:13:53.2 Chris: I have seen them, not their face, not their clothes, but I know it was them, but there was nothing really remarkable to define that that was Dick or Jen. But the other night, I fell right into a sleep, we were sitting at the kitchen table, laughing, I could see their faces, I could tell it was their clothes. We were laughing, we were talking, we were eating. It was like a regular Sunday dinner night.

 

0:14:29.0 Chris: That's wonderful.

 

0:14:30.0 Chris: It is. And then Monday night, the same thing happened, but the same identical thing, we're laughing, we're talking, we're having a ball.

 

0:14:41.0 Chris: How did it make you feel?

 

0:14:42.9 Chris: I woke up and I went, "Was that real?" And then I thought, "That was real, that was really real." I don't remember what we talked about, but I know that it was stuff that we would talk about in ordinary circumstances, like my brother's job, my job, how Jen was doing in school, stuff that...

 

0:15:10.1 Chris: Yeah. Life.

 

0:15:10.4 Chris: Life. [chuckle]

 

0:15:11.9 Chris: How real did the dream seem?

 

0:15:13.7 Chris: Oh, absolute, it was real. We were sitting there as much as we're sitting here.

 

0:15:20.0 Chris: Okay. Have you ever had a dream that was that vivid?

 

0:15:25.2 Chris: No.

 

0:15:25.5 Chris: No? That was the most vivid dream.

 

0:15:30.2 Chris: It made me feel like that whole 12 years had never existed.

 

0:15:36.9 Chris: 12 years, that's interesting. 12 years since he's been gone. Okay. Because it was so real, that it was... He was there in the present.

 

0:15:44.0 Chris: And seven years since my daughter was gone. It was like we were always together, never separated.

 

0:15:51.4 Chris: Yeah. Does it make you think you're gonna see them?

 

0:15:53.3 Chris: Mm-hmm.

 

0:15:55.1 Chris: Okay.

 

0:15:56.4 Chris: If I quit swearing.

 

0:15:56.9 Chris: If you what?

 

0:15:57.9 Chris: Quit swearing.

 

0:16:00.8 Chris: [laughter] You're worried you're gonna end up in the wrong place. I have a feeling you're okay. It's interesting that you can be in a dying process and at the same time feeling very much alive and that made you feel alive.

 

0:16:19.1 Chris: Okay, yeah.

 

0:16:21.0 Chris: That's wonderful. [chuckle]

 

0:16:27.3 Chris: So Patricia was a 90-year-old patient who had a progressive lung disease and she really took Hospice by storm. She had unrivaled vitality. She was intellectually curious, and she was probably the most educated person who had never received any formal education. But she read a minimum of two books a week, and oftentimes she would use quotes or citations, and I'd have to actually look them up. What's your favorite book?

 

0:17:00.7 Patricia: I don't have a favorite book. That's like saying, "Do you like steak or oranges?"

 

0:17:02.1 Chris: Well, give me a couple.

 

0:17:06.7 Patricia: The ones brothers... It had to be the ones that affected me the most, and I think the brothers Karamazov was right up there. And I always wished I could really read it in Russian, though, because it would be different.

 

0:17:17.5 Chris: Yeah, yeah.

 

0:17:18.3 Patricia: They never get our idioms right.

 

0:17:20.3 Chris: Well, I think Patricia's interesting for a multitude of reasons, one is she viewed death as really a deliverance. She was ultimately a pragmatist, and her quality of life had got to that point where she could honestly reflect and say, "This is not how I wanna live."

 

0:17:41.4 Patricia: I wanna go and I wanna continue this interesting process. I know what the end's gonna be, I just don't know when I'm gonna get there, or what else is gonna happen around the corner as usual. But I was this... That's why I like the dreams. That means I'm continuing on this process.

 

0:17:58.2 Chris: Yeah. It's active for you.

 

0:17:58.9 Patricia: Yes. Joining this has really taken a big burden off my shoulders because you can't help when you're in my situation thinking, "Boy, I know I'm dying, I wonder how it's gonna be?"

 

0:18:08.5 Chris: And it was extraordinarily important to her that she not be a burden to others. This is somebody who had been the caretaker of, and she was less comfortable being somebody's patient.

 

0:18:22.0 Chris: And I say that with respect.

 

0:18:24.1 Patricia: My other thing is that this is the most interesting thing that I've ever done with myself, is dying. And I love to talk about it, but I can't, with you people I can, but with my family, I find they're okay with the idea, they know that I'm satisfied, that I've lived my life and I want it over soon, but they aren't comfortable with me, either they're bored or because maybe I talk about it too much, I try not to. But since it's the main focus on my life now, that's what I wanna talk about. But I have to force myself not to because there's no way to leave them with mom sitting there talking about death all the time.

 

0:19:06.5 Chris: She had a lot of dreams and she looked at them kind of objectively, looking for meaning. Perhaps the most comforting dream was that of her husband who she'd had a life-long love affair with. And she relived a daily ritual where she would come back from swimming, she'd come in the kitchen and he would have a cup of tea waiting for her and the crossword puzzle set out. And she would, of course, give the answers and he would dutifully write them down, and that was their special time and she got to relive that. And in her words, he felt like he was present.

 

0:19:46.0 Patricia: So in the dream he was always waiting for me, but he never said anything but he always had tea. And once when I came home, he was... I couldn't find him when I first came in the house, and I went to our downstairs bathroom and he was standing there, he always wore dreamy white T-shirts, and he was staying there smiling, but he never said anything. But they were very happy dreams.

 

0:20:06.6 Chris: The other dream that was very important to her, she had had a lot of loss. At nine, she had lost her mother, and she re-found to a caretaking role very early in her life and really continued it with and had a lot of children. The one injury she carried in her own words was the not knowing whether her mother would like her.

 

0:20:27.1 Patricia: Would my mother have liked me? 'Cause I don't know, and I really don't know. And they just say, "What do you mean? Of course, she would have loved you." And I said, "No, I have no way of knowing." It's something that's in the past that I keep wishing I could go to, but I can't go there. So I think that's what people have to face too. Do you promise me that you would tell me when it was close, when you knew? I'm not gonna put you up on the table here, but...

 

0:21:00.8 Chris: No, I...

 

0:21:00.9 Patricia: I think it's closer than farther.

 

0:21:02.8 Chris: Yeah, I do. I think we're talking about a matter of weeks.

 

0:21:06.1 Patricia: Oh, that would be wonderful.

 

0:21:09.1 Chris: Yeah, you know what I think? I think you've done all the hard work, you're prepared psychologically. I think that if there's any hard thinking to do on this, you've done it. I think that you're listening to your body, I don't think you feel much like eating, it's too much work. And nature or God or whomever has a way of taking away your appetites, so you're not suffering with want. And it's just easier to rest now and that's where you're at. And I think you're just gonna sleep more and comfortably. And I don't think we're gonna be doing very much. I think you're doing it yourself. Okay.

 

0:21:50.8 Patricia: I'm perfectly content just to leave everything and that started just very recently. In the back of my head, I thought, "It's time to give up. I just can't do it anymore." And the truth is, I don't have to do it anymore, do I?

 

0:22:12.2 Chris: No. I'm going to... I'll come back and see you later. You're probably ready to sleep now.

 

0:22:18.0 Patricia: Yeah. To sleep, perchance to dream.

 

[laughter]

 

0:22:23.3 Chris: Did you catch that?

 

0:22:24.0 Speaker 6: No.

 

0:22:24.1 Speaker 7: No.

 

0:22:24.5 Chris: Can you say that again?

 

0:22:25.0 Patricia: To sleep, perchance to dream. From Hamlet.

 

0:22:32.3 Chris: I was gonna say Shakespeare.

 

0:22:34.8 Patricia: Good. Thank you for everything.

 

0:22:36.6 S3: Thank you, get some rest.

 

0:22:38.8 Patricia: Okay.

 

0:22:39.6 Chris: So she kind of carried his wound with her, and just before dying, I asked her if she had seen her mother, and she pointed up and she smiled and she said yes.

 

0:23:01.0 Chris: My first thought on Paul is this, is that he's automatically recognized, or should be automatically recognized, as a wonderful human being. He really could be the poster child for the process for a few reasons, one, he talks about it as a bereaved person, what it was like to watch his wife have these sort of experiences and what peace and comfort that gave him.

 

0:23:25.1 Speaker 16: When my wife passed, she was in a hospice room at Sisters Hospital. In the last couple of days, she was talking to her father who they were very close. Her mother was a heavy drinker, but she was very close to her father and actually practically raised his children, her siblings. And she was talking up to a corner of the room, and looking at her face, I knew she was seeing her father. And he had a pet name for her and he talked to her and they talked back and forth.

 

0:24:00.5 Chris: One, he's telling it as somebody who bore witness, then he's telling his own experiences three weeks before his death. And he touched on a number of themes that are common. One is travel, so that's about a third of people. Either travel or preparing to go. And as he says, "I lived in the same house most of my life. Can't figure out, why am I moving? Why are these... I'm putting stuff in boxes."

 

0:24:24.4 Chris: She wanted me to pack up some things for her. So I had this crazy dream, I'm packing goods and I'm setting them, for some reason, up high. And everything went fine until I fell on my bed and I really clunked. I banged up pretty good.

 

0:24:41.7 Chris: So there is obvious symbolism to that, that you're in transition or you're to go somewhere. The other thing was people who have had brushes with their own mortality such as war, it leaves an imprint, understandably, that is undeniable and tends to be revisited.

 

0:25:01.8 Chris: Another thing that I've dreamt of quite often, not lately, I'm back in the service. I'm at Fort Devens up in Massachusetts where they were forming this company that was gonna go overseas, a new company. And the guys are all young, they're like, "I remember him" and I'm old. And I'm trying to tell them, "Guys, I've been here, I've done this, I'm not gonna do it again" and they're arguing with me. And that's a crazy dream.

 

0:25:32.2 Chris: And finally, and most importantly, he sees his beloved wife.

 

0:25:37.7 Chris: I've probably had 15 dreams about her, maybe, somewhere in there. She always wear... I dream in color most times, and she always wears a beautiful light blue. It could be a suit, it could be a gown, it could be a dress, but it's always light blue. And a couple of times she gave me the little beauty pageant wave, and a couple of times she'd sort of greet always with a smile. Only one or twice I've ever heard her voice, but she always kind of lets me know that she's fine, I'd get that feeling after a dream like that.

 

0:26:14.4 Speaker 17: Many patients will share these dreams, be very forthcoming with these dreams and tell anybody who's willing to listen. And some people are much more private, much more close to the vest with these experiences, but Paul was very open and it was interesting 'cause his family would actually inquire and be interested and engaged in what he was experiencing in that realm as well. For them, it was definitely something that softened the blow when he was lost.

 

0:26:51.4 Speaker 18: The feeling he always had was that everything was okay. "Your mother... I had dreamt about your mother last night and she was packing a suitcase for me." And I said, "Oh, are you sure she's ready?" We used to joke with him that mom needed a break after she died, she wasn't ready for him yet, and he said, "Well, I don't know, but she packed my things, but then she left without me." Okay. He was... And I'd say, "Well, dad did that scare you?" "No, no, it always makes me feel better when I dream about your mother."

 

0:27:22.4 Speaker 19: I think there's something in that for us to understand, there's this assumption that dying is a sufferable state when... And oftentimes, depending on how it's viewed, and if we truly listen to people, there's often a richness there. There's a great living. And to think that that's how he sees and feels his existence that close to death is really remarkable.

 

0:27:57.8 Chris: One of the things we struggle with is describing them as dreams, it's the only reference point we have, but it's challenged because what our patients are saying is they're more dissimilar than similar. And the most distinguishing feature is that these actually feel tangible, vivid, virtual.

 

0:28:18.5 Jeannie: I was laying in bed and people were walking very slowly by me. The right-hand side, I didn't know, but they were all very friendly and they touched my arm or my hand when they went by, but the other side were people that I knew. My mom and dad were there, my uncle, everybody I knew that was dead was there, and they passed and did the same thing. So when I told my daughter the day before, this was a very significant thing, but when I woke up, I was happy. It left me with a good feeling that somebody was there.

 

0:29:08.1 Chris: If you scripted that out, that's the basis of a horror movie, and there she is feeling immense comfort. It was an intensely human experience, including tactile sensations. What's interesting about Jeannie is as she's describing lying there and everyone she knows walking by her who's dead, she's doing it with a smile on her face.

 

0:29:31.1 Jeannie: I feel good about it. I thought it was a good dream. But, boy, I remember seeing every piece of their face. I know that was my mom and dad and uncle and my brother-in-law. Yeah, I have seen my mother recently more.

 

0:29:53.7 Speaker 21: How do you feel when you see her?

 

0:29:57.0 Jeannie: Oh, wonderful. I can't say that my mother and I got along all those years, but we made up for it at the end.

 

0:30:09.3 Chris: And again, the remarkable thing about Jeannie is there was some sort of rub within the relationship, her relationship to her mother, and that somehow they made peace. So again, this idea of how do you find closure? How do you find grace? How do you find peace? You can't do that without addressing the scars in your life.

 

0:30:33.3 Horace: It felt good. It just felt, this is okay. And then I saw my wife all of a sudden appeared and I'm thinking, "Well, this is even better than." I thought I was gonna be able to hug her, and it was just a good time. I don't know. Everything had left you, like there was no problems, no. Everything was alright. Everything was happiness. It was like you wish the world was understanding and clearer. And she was... Well, she was always beautiful, but she was even prettier. She was... It was just a feeling of warmth and peace and everything was okay.

 

0:32:16.2 Chris: Horace can't find the words to express his love and his joy at being reunited with his wife, and I think what's so special about that is we think of death mostly as loss and passing and sadness. You're reminded of the sense of love and reunion. Horace says, "It's like all the problems went away." Everything else just melts away and he is absorbed in his love for his wife.

 

0:32:47.7 Speaker 23: Maggie was a very special lady. She's that one patient that I will never forget. Maggie was born with cerebral palsy, and although she had limitations, she never let it stop her. One of the more, I think, emotional dreams that she had had was her sister, Beth, had come to see her.

 

0:33:11.1 Maggie: I ran down the bed, my sister came through, my sister, the one who died, she came in the bed by me, in the bed, my sis... She came with me, come and live with me, and she says, "I can't." She says, "I just can't, I just can't stay with you." I said, "You gotta stay with me, I'm alone, stay with me." She says, "I can't." And then she says, " [0:33:46.2] ____." And then she says, "I'll be back. You should just lay down." But I wanted her to stay with me."

 

0:34:02.7 S6: It was so real for Maggie, she became really emotional telling it. And the big thing for her is it was so real to her that she had to look at all of us and say, "Do you believe me?"

 

0:34:15.6 Maggie: People don't believe me when I say this stuff. Do you believe me?

 

0:34:22.5 Chris: Yes.

 

0:34:23.5 Chris: Do you?

 

0:34:24.6 S6: Oh, I believe you. And we told her yes, we believe her but is it was... Although she was upset and she was crying, it was more comforting to her than anything because she knew that her sister was coming back for her and she would be with her sister again.

 

0:34:39.8 Chris: So for me personally, the words of Horace and Maggie are probably the most profound. When you listen and more importantly, when you watch them, they're actually overwhelmed with emotion. They're actually struggling to find words, to find language to describe an experience that they not only observe but truly felt or lived. The bottom line is this, Horace and Maggie aren't showing us any signs that they're either anxious or fearful of dying. What they are actually is overwhelmed and warmed by love, and we can all relate to Dylan Thomas who said, "Do not go quietly into the night. Rage, rage against the dying of the light." And that's both beautiful and lyrical, but it may not be accurate. The difference is Dylan Thomas was imagining death, versus Horace and Maggie who are actually experiencing it. Maggie in particular inverts our understanding of dying. She isn't fighting against anything. She's not fighting against the dying of the light. What she is, she's fighting to get back, to get back to her sister and to her childhood home and of all places, South Buffalo.

 

0:35:53.1 Speaker 25: The biggest thing we kinda also wanna do is to separate delirium.

 

0:36:00.2 Speaker 26: So delirium, just as a brief definition, is just, say acute confusional state.

 

0:36:03.0 Chris: The number one critique is that this is an altered mind.

 

0:36:08.4 Chris: Along with that or separate from it, we often see these very meaningful experiences that happen to dying patients as well. And the basis of us looking into this is saying it's not fair to lump all of that together. It's not fair to characterize all of this as a type of brain dysfunction.

 

0:36:29.1 Speaker 27: The way I kinda think about it, there's different realms. So the physical realm, they're of kind of behaviorally picking at things or maybe even being aggressive, things like that. Whereas, if you think about the spiritual realm, they're not connecting with anything higher, whatever that might be. They're not connecting with anything outside themselves.

 

0:36:50.0 Chris: The biggest difference is how the individual is made to feel. You don't meet delirious patients who come out and say, "Hey, that was wonderful." They're traumatized. They're typically medicated, because it's so distressing. The themes are being... Someone's chasing you, someone's gonna rape you, snakes, fire. Delirium is an awful state. This is quite the opposite. This you come out of with enlightenment and with understanding and with comfort and relief and all those good things.

 

0:37:25.5 Chris: These people are not thinking less well, they're thinking better. This isn't clouded of consciousness that drugs produce, this isn't an alteration at all, this is heightened thinking.

 

0:37:38.3 Patricia: Yeah, to consent to a study is like signing a mortgage, you couldn't go in there drunk and falling. And well, maybe you could, depending on some things, but you need to be able to understand the implications of participation.

 

0:37:54.7 S7: Medical perspective likes to have nice concrete boxes like, "This is what delirium looks like. Here's how you treat it." Everybody goes on their merry way. I feel like there's more of a gray area there.

 

0:38:07.0 Chris: I guess what gets me edgy on the delirium issue is it's a very easy route to medicalize this. It's easier to talk about the brain than it is the mind, and it's easier to talk about objective rather than subjective. So, when faced with something that's unknown, that's highly subjective, the quickest, easiest thing you can do is put it into a medical ice bucket of delirious goo and say, "That's just that." It's an easy way out rather than asking yourself any next questions.

 

[pause]

 

0:38:54.4 Chris: I took care of Jessica for a long time, and she was 13 years old. And... John, give me a minute.

 

0:39:07.8 John: Sure, take your time.

 

[pause]

 

0:39:24.5 Chris: I don't know how to say it. I didn't know how to help a child die and she really helped me help her. And how she did that was, I asked her about her dreams and she described her dog that had died coming to her.

 

0:39:51.9 Jessica: My dreams that I have are good dreams now, which I dream about my old dog Shadow that has passed away and I see him and he's in a good place and he's running, he's having fun, but then again, he runs away and I never see him again. I feel like it has a meaning of saying goodbye. I have a feeling to have him say, "It's okay. That I'm in a safe place and I'm in heaven."

 

0:40:23.6 Chris: He comes with a meaning for you.

 

0:40:25.2 Jessica: Yeah.

 

0:40:25.2 Chris: And that meaning is...

 

0:40:27.2 Jessica: That we were close, even though I didn't like him half the time 'cause he would always be at my butt, but I still loved him.

 

0:40:34.3 Chris: Okay. But possibly he's coming back to give you some comfort?

 

0:40:38.7 Jessica: Yeah.

 

0:40:39.2 Chris: Is it really comforting when he's there in your dream?

 

0:40:41.6 Jessica: Yeah.

 

0:40:41.7 Chris: Okay. Does it seem very real?

 

0:40:44.3 Jessica: Yeah. It's different than all our dreams, yeah.

 

0:40:47.9 Chris: Yeah.

 

0:40:48.8 Jessica: I feel that meaning is a meaning of love and that they're there and they're always gonna protect you.

 

0:40:57.9 Chris: It's funny 'cause he doesn't say anything to you.

 

0:41:00.8 Jessica: No, dogs don't talk.

 

0:41:03.3 Chris: No, but dogs give messages.

 

0:41:04.8 Jessica: Yeah, they give you a message to feel and love, that you're okay.

 

0:41:17.7 Chris: She knew that the dog being dead and coming to her symbolized that that's what was going to happen to her. Her next fear was understandable as a child, she was raised by a single mother, is, "Where do I go without... Who am I? How do I do without my mother?" And so, what she dreamt of is her mother's best friend who had died, and she sees her, actually more of a vision, in front of her mother's dresser looking in a mirror and putting on her mother's necklace.

 

0:41:56.1 Jessica: Mary is my mom's... One of her best friends that she passed away from leukemia. What happened was I had seen her in my mom's room, and I was just coming up the stairs and going into my room, but I stopped, 'cause I had seen something at the corner of my eye. And she was playing with my mom's curtains, and she had her favorite shirt on, my mom told me, 'cause I told my mom it was grey and blue checkered shirt, like a flannel shirt that she had on. But I had a feeling that she was just coming to tell me that you're gonna be okay, everything's fine, but she didn't look at me, she was just looking... But I had a feeling if I called on her name, she would look at me, but I didn't wanna scare my mom.

 

0:42:48.6 Chris: How did it make you feel... What did you get from her? What did you feel from seeing her?

 

0:42:52.1 Jessica: I felt a sign of relief...

 

0:42:57.1 Chris: Yeah.

 

0:42:57.5 Jessica: And happiness, because she was a very strong person, and I know that I'm strong. And my mom tells me all the time that I was... I'm like her.

 

0:43:09.9 Chris: So it was really comforting.

 

0:43:11.9 Jessica: It was comforting, yes.

 

0:43:13.3 S7: You weren't afraid.

 

0:43:14.2 Jessica: I wasn't afraid of it at all.

 

0:43:18.3 Chris: So again, this idea that we all have injury, we all have need and it's specific and those were her... Those were unique things to Jessica that God addressed through this process. I was able to reach her in a way, but first she reached me through these experiences. And my sole concern was what pain was she feeling, that recognition, and what she was able to describe was that she felt loved and she felt safe and she was very clear. She translated it for me.

 

[pause]

 

0:44:17.1 Chris: One of the more interesting findings of our study was really this near absence of religious reference. Others have reported the same thing. But one of the core themes of end-of-life experiences really are the tenets of faith, which are love and forgiveness. So maybe there actually isn't a conflict between religion and what the dying actually experience.

 

0:44:39.1 S7: You know, when Chris was first revealing some of his research findings with me, he felt sad for me, because he said, "You know, I'm sorry to tell you, Kelly, there's not a lot of visions of Mary and Jesus and all of that," because he knew that was sort of my spiritual bent. And I said, "I'm okay, you don't have to... I'm good with that." And he said, "What I really am finding out that it's all about love and forgiveness," and I went, "Imagine that, love and forgiveness." I don't know if that's a theme that you are holding on to, but I can tell you, Chris, that's a theme that sort of carries itself through.

 

0:45:16.1 Chris: I think this is beautifully captured by this hospice chaplain named Carrie Egan who wrote this very powerful piece. And in it she wrote, "We learn about love when we learn about God, and the first and usually last classroom of life is our family."

 

0:45:34.9 Carrie Egan: Losing your soulmate is the absolute most painful thing I've ever experienced. So this is the one and only picture that exists of Patrick and I that was snapped by my niece at a wedding. Patrick was my long-term boyfriend for over 15 years. Patrick didn't cook, he ordered out or hoped that I would leave some meals behind, but Patrick didn't cook with one single exception of making his grandmother's sauce, which he did, but I wanna say about every four, six, eight weeks through the entire 16 years I knew him, Patrick was the only member of his family that knows how to make the sauce, and for all the years I knew him, he insisted something was missing. Fast-forward to, this would be the Sunday before he passed. He woke up in the morning and I couldn't get him to eat, he wasn't hungry, total loss of appetite, and I'm like, "Baby, we gotta make you something for breakfast. What do you want?" And he goes, "I'm full." I said, "Pat, you had a Snack Pack pudding yesterday, you're not full."

 

0:46:56.6 CE: And he's like, "Oh, no. I ate with Nana Dolores last night." As real as I'm sitting here, he believed he made sauce with his grandmother the night before, said he could smell it, he could still taste it, he was full from it and she showed him after all these years what he had done wrong, which is the very last step before you take it off the burner was to add a teaspoon of sugar. We spent the next seven and a half hours, 'cause that's how long it takes, making his grandmother's sauce that day. And he was so sick and it was the only day I was ever allowed to help him.

 

0:47:46.2 S7: Once he was gone, did that dream help you accept that reality further?

 

0:47:52.7 CE: Absolutely.

 

0:47:54.0 S7: Yeah.

 

0:47:54.4 CE: Absolutely. And not only the reality that he is gone, it's made me think of, maybe there is something out there after we go. I think this is a man who is at peace and very honest, if your last dream in life is about spaghetti sauce, there's nothing more peaceful than that, right? It wasn't about someone you wronged in the third grade, it was about sauce.

 

0:48:34.3 Speaker 31: When I was sleeping, like deep sleep, my Aunt Mariam came down to bring me up to heaven, and she was playing with me with barbies.

 

0:48:58.7 Chris: And when you see your aunt where are you?

 

0:49:03.6 S3: In a castle.

 

0:49:05.1 Chris: Really? Is it beautiful?

 

0:49:06.4 S3: Yeah, it's huge.

 

0:49:09.8 Chris: Describe it for me. Are there other people there?

 

0:49:13.1 S3: No. There is a window that you can see the sun through it and it has God on the window.

 

0:49:25.4 Chris: Like a church would?

 

0:49:27.9 S3: Yeah.

 

0:49:28.9 Chris: Okay, that sounds beautiful. What do you think the castle is? What does it mean?

 

0:49:36.3 S3: Safe Place.

 

0:49:38.0 Chris: A safe place. Yeah.

 

0:49:40.0 S3: And then they have a pool.

 

0:49:43.2 Chris: Really?

 

0:49:43.7 S3: A built-in pool.

 

0:49:45.4 Chris: Whoo! You like to swim?

 

0:49:47.0 S3: Yeah.

 

0:49:48.5 Chris: Okay. So how often do you dream of her?

 

0:49:53.8 S3: Once in a while.

 

0:49:53.9 Chris: What did... Did she say anything to you in the dreams when you see her?

 

0:49:58.7 S3: She says, "I love you and you better go down there and get better and better."

 

0:50:07.0 Chris: Okay. Did she ever say anything else?

 

0:50:10.5 S3: That everybody is watching over me.

 

0:50:15.3 Chris: Yeah.

 

0:50:16.1 S3: That I'm okay. She says... You okay over there?

 

[laughter]

 

0:50:25.1 John: Yeah. I'm sorry.

 

0:50:27.3 Chris: So when you stick... You're looking after him. That's kinda funny. Can I ask your mom to come in? Michelle? I knew she was in ear shot. When did all of this start?

 

0:50:44.6 Speaker 32: The first time I heard of anything was back in August, she was extremely sick, and she had an MRI maybe a week later and that's the MRI she had that she was talking about seeing Aunt Mimi doing... You know, playing, and then she said, Aunt Mimi told her she had to come back and get better.

 

0:51:09.7 Chris: No.

 

0:51:10.7 S3: But then when we came out to the waiting room and she was sitting up in her chair where she perked up and it was like old Jenny again. I don't know if they gave her some magical stuff in that MRI, she wasn't so sick, she was reading a sign on the wall and I kiddingly said to her, "Geez, I missed you. Where have you been?" And then that's when she told me the story about she went to go see aunt Mimi.

 

0:51:34.0 Chris: You nailed it. And you've got the world's best smile. Is there anything else we should know about you?

 

0:51:44.9 S3: That I'm beautiful.

 

0:51:46.8 Chris: You are beautiful. That you gotta [0:51:50.1] ____.

 

0:51:50.6 S3: I am?

 

0:51:51.8 Chris: Yeah.

 

0:51:53.0 S3: And you're the toughest kid I've ever met.

 

[chuckle]

 

0:51:56.9 Chris: And you're a tough kid.

 

0:51:58.8 S3: Yeah, I'm brave.

 

0:52:00.0 Chris: Yeah.

 

0:52:02.1 S3: Right before she went to sleep yesterday, I heard her voice in the bedroom over my baby monitor and I thought maybe she was calling me, so I asked her, "What did you say?" And she said, "Nothing," and then I heard her voice again and I thought, "What the heck? Who is she talking to?" So I went in there and she said she was talking to God and that he was a very old man, but a very good-looking, cute man, and that he was going to make her all better, and that she was gonna go live up in the castle with my aunt, Mariam, who she had been talking to as well, and that there's a big huge bed there, and I let her know that we were all gonna be there together some day, that mom was gonna come there too someday when it's my time. And she said, "God will make you all better when you get there." So, my mother said, can she come stay there too, and she said, "Sure, there's a pull-out bed for her."

 

[laughter]

 

0:53:06.3 Chris: For grandma.

 

[laughter]

 

0:53:07.7 S7: Yeah. Grandma gets the pull-out bed.

 

[chuckle]

 

0:53:12.2 S3: But I did let her know that mommy will be in that castle someday when it's my time, and I think that might have eased her thoughts a little bit.

 

0:53:21.4 Chris: The thing... I've been doing this a long time, and the thing that I worry about more, most, isn't the physical symptoms, it's much more the psychologic peace. And I think she's showing us how to do it and that she's okay.

 

0:53:39.4 S3: Showing me how to do stuff the right way. Little jerk.

 

[laughter]

 

0:53:46.4 Chris: I think she had a good example.

 

0:53:48.4 S3: She's a pretty great kid.

 

0:53:48.5 S4: There's a lot of love here. A lot of love there.

 

0:53:55.5 S3: Yeah.

 

[pause]

 

0:54:06.3 Chris: So he gets up at about six in the morning, and then he does his thing and he waits for the horses to go and eat their feed and then he goes back to bed and has a siesta.

 

0:54:20.3 Speaker 33: Hey, chubby. Butterfly. Butterfly, you in there? Butterfly, are you in there? You gonna come say hello? It takes him so long to go to get his blankies all organized. There he is. Say hello to everyone. He was asleep. Hi, Butterfly. So he used to live in our house for years.

 

0:54:55.9 S7: Then he just got too big?

 

0:54:57.3 S3: No, he got too smart, he can open cupboards, he can do anything. You go back to... He's back asleep already.

 

0:55:05.6 S3: So, can he...

 

0:55:06.7 Chris: Probably not surprising, one of the most common things that... Themes that people dream about is their pets. If you think about it, our greatest gestures of caring and love are actually probably towards our children and our animals. And of course, they return love unconditionally. They really are our true companions. We've actually had people who assume they weren't close to dying, because they had seen everybody but their pet and that's who they were waiting for and I get it.

 

0:55:35.6 Chris: Have you seen anyone else who's passed?

 

0:55:38.3 Speaker 34: My cat.

 

0:55:40.0 Chris: Your cat? The Siamese cat? And that was from a long time ago.

 

0:55:44.3 S3: Yeah, that was that cat...

 

0:55:47.1 Chris: What was the cat's name?

 

0:55:48.1 S3: Suzie.

 

0:55:49.6 Chris: Suzie?

 

0:55:51.2 S3: Yep.

 

0:55:52.0 Chris: Okay. You're a big animal person, I take it. Are you a big animal person?

 

0:55:56.3 S3: I love animals?

 

0:55:57.1 Chris: Do you always? Yeah. Have you always loved animals?

 

0:56:00.2 S3: I love 'em.

 

0:56:00.4 Chris: So Suzie is a Siamese cat that you had for 12 years. And from what your kids were saying, that was like 20 years ago.

 

0:56:08.2 S3: Yeah.

 

0:56:09.0 Chris: Okay, so you saw the cat in your dream.

 

0:56:11.7 S3: Yeah.

 

0:56:12.5 Chris: What did that feel like?

 

0:56:14.4 S3: Good.

 

0:56:15.9 Chris: Good.

 

0:56:16.3 S3: It was a good dream.

 

0:56:19.0 Chris: Good.

 

0:56:20.1 S3: Really good dream.

 

0:56:20.2 Chris: And you've mentioned having a really close relationship with your dog. And have you had any visitation or any type of dream experiences with your dog in them?

 

0:56:33.1 Speaker 35: Very few. There are very few times that I had experiences or dreams with her. But they were all happy.

 

0:56:46.9 Chris: Oh, good.

 

0:56:47.4 S3: 'Cause she was a blind dog and I took care of her for so many years. I just lost her a year ago. That... All I could see her was running in fields and not being blind anymore.

 

0:57:15.7 Chris: About 40% of people either dream of travel or preparing to go, like packing. And we've seen everything from dreams about traveling in a canoe to mothers looking like they're scouting somebody out to airplanes. What's really interesting is they often don't know where they're going, they just know they're in transit, but they don't seem at all bothered. Sometimes the travel, people they're traveling with are deceased and they don't seem bothered by that. I am always struck by this idea, the metaphor is so obvious, this idea of transition or going somewhere and also impending death. There's a clear metaphor that people don't seem to be bothered by that or make the connection. It's like the time for therapy is over. They come up and they wake from these experiences, they really don't have questions, they just have answers. So in the case of David, here's an elderly gentleman who returns to being a boy again, a child, and he's riding his bicycle in his hometown and he describes going down these various streets, he's not bothered, but he's not sure where he's going until he reaches his destination, which is home.

 

0:58:18.8 Speaker 36: Well, in the first travelling dreams, I was riding a bicycle and I was going through a small town, and after I get through the town, they changed the roads. So when I was ready to come home, come out of there, I go down that road and it's a dead end, so I have to turn around and go back and I'd try another road and that stops on a dead end, so then I'm lost.

 

0:58:56.6 John: Do you ever find your way? Or do you wake up from the dream?

 

0:59:03.8 S3: For the first three times I dreamt like that, I never... I would wake up and then the third time I dreamt that, I say, "Oh, there's another road further down," and I take that and I can get through.

 

0:59:20.5 Chris: So Elzine is interesting. She's actually somebody who's end of life experiences did actually return her to the church of her childhood.

 

0:59:29.4 Speaker 37: And there about going to church and I have been rushing to get there, sometimes being late like that. Now that was in my younger days...

 

0:59:44.9 John: Right, right.

 

0:59:46.5 S3: And that was in my younger days. I sang in the choir, sometimes I'd be playing the piano.

 

0:59:54.2 John: And you used to play the piano, right?

 

0:59:56.0 S3: Yes.

 

0:59:57.4 John: How did that make you feel?

 

0:59:58.7 S3: Good.

 

1:00:00.3 John: To think about those past times?

 

1:00:06.9 S3: Yeah.

 

1:00:12.9 Chris: So if you think about it, clearly, one of the great fears for families is is their loved one okay in there? Are they comfortable? Are they at peace? Where do their minds and hearts go when they can no longer speak, when their eyes are closed? And really end-of-life experiences help answer some of those questions and really alleviate fears. And it makes sense, it stands to reason that really what helps and comforts the patient does so as well for the family and that's really what our studies have shown, not only does it provide comfort, but it actually also helps with the grief processing. And this makes sense because end of life experiences re-contextualized dying from something that's lonely and empty to actually something that affirms and validates having lived.

 

1:01:01.7 Speaker 38: On a day that she passed, I'd come in and all about 10 o'clock in the morning. And there she was laying there, just her head back to staring so hard at the ceiling, just staring up, staring up. About, I'd say right around 3 o'clock, I said to her, "What are you staring at so hard up there?" She says, "It's the angels, they're coming down to take me home to heaven." And those were the last words that I ever heard her speak. It made me feel at ease knowing that she was at total ease when she died. It wasn't that she was suffering or anything, she was happy that she was going and that the angels were coming to get her. [chuckle]

 

1:01:50.3 S4: If you look at the impact of the dreams and visions, it is a broad stroke for everyone who's involved in the care of the patient, including the patient, and that's what's so profound. That impact affects the patient immediately, affects the family immediately, and affects the clinicians. When we hear about those dreams and we see the impact of those dreams, instantly in that moment, everyone is affected, it's a universal intervention, it's a universal experience that no other act that we've ever carried out in hospice has had.

 

1:02:23.9 Speaker 40: When I look back at that whole process after my mom passed and had a chance to think about her last six months and even the time previous to that, there was a point in time when my guilt or whatever of having her there was relieved by these dreams she was having. She was so happy that I was happy, but then when I looked back at how different things got for her as she started to have these dreams and how happy she was, and how peaceful when I left, that she seemed like everything was right in her world.

 

1:03:28.2 Speaker 41: I think all of this dream phenomenon gives the ones left behind a window into what lies ahead. And although these dreams don't provide a certainty, they certainly provide us some level of comfort and knowledge that there's more to this than maybe we thought, and maybe what lies ahead isn't as bad as we wondered.

 

1:04:08.3 Speaker 42: The typical dreams of deceased loved ones coming back feeling presence, they're wonderful and they're meaningful. But sometimes people carry with them trauma throughout their lives, that doesn't go away just 'cause they're at end of life, and really there can be distressing dreams. The greatest human motivation is anxiety and fear. So in having these dreams, sometimes the most anxiety-provoking dream can be the most meaningful because there's an urgency that comes with it and an effort to, "Well, I really do have to make amends," or "I really do need to get this part of my life sorted out before I can die."

 

1:04:46.2 Speaker 43: I had a lot of the dreams that I was mad that I got a woke up, woke up from and I tried to hurry to go back to sleep, so I can get back into it, and I couldn't, because it was a good one.

 

1:05:00.5 John: What were you dreaming about in those ones?

 

1:05:01.8 S4: Oh, you don't wanna know about that on. You don't wanna know about that one.

 

1:05:07.5 S4: Well, I think we have to go into these circumstances meeting these patients at this time of their life, knowing that there is so much history that came before where perhaps they weren't the charming, loving, lovable characters that we come to know.

 

1:05:27.2 Chris: So Dwayne was in his mid-40s and he had had neck cancer. It's an understatement to say that he had a hard life. He had started using crack at the age of 16 and he'd actually been in prison more than out of prison. In fact, he had to come into our inpatient unit because his mother was using his medication. So this is really a story of multi-generation addiction and impoverishment, but he was remarkable. He was highly intelligent, he was beyond gregarious and in many ways, he was an incredible father. When he was in our in-patient unit, he probably had the most distressing dreams that we had ever seen and what he dreamt about was that he was being stabbed at to the site if his cancer by those whom he had harmed. He had one of those lives where he couldn't afford to look back or live with regret and this was finally his day of reckoning.

 

1:06:28.2 Speaker 44: My dreams, man, my nightmares, I don't like them. I think it's because my past is coming back to me from doing wrong, because I'm not gonna say I'm the perfect guy when I was out there because I was ripping and running the streets, doing wrong to individuals that I knew I shouldn't have been doing wrong to, and now they caught up with me and now they know my symptoms, they know I'm sick, so now they wanna try to hurt me. It was like they were jigging a knife trying to cut out my neck where my cancer was at.

 

1:07:18.2 John: Right.

 

1:07:18.3 S4: "Stop, stop." I'm trying to fight. "I'm sorry, I'm sorry." I'm trying to fight this guy off from hurting him. That's scary, scary to me. I'm not a bad individual, man. Well, I done cross a lot of people in my life and I need help, I need help. I don't wanna live my life being out in the society walking, having to look over my back, man. I just want people to forgive me and please know that I was sick at the time when I was doing certain things that was hurting them and their families. That's all I want. I don't want them to look at me as a bad individual because I'm not. I need help, I need help.

 

1:08:17.0 Chris: And he awoke from this experience really quite transformed and he asked to see a daughter, one daughter named Brittany, because he needed to say he was sorry.

 

1:08:30.5 S4: When we go through these motions of trying to reunite incarcerated loved ones with patients who are in the final stages of life, we often have little to know, sort of warning, when is this gonna all unfold if it's going to unfold.

 

1:08:47.7 Speaker 45: In the midst of me taking my plea, the judge, they let me out, they petitioned to let me out of my ankle bracelet. And at that time, I hadn't known who got me out. I thought it was my attorney and I've come to find out it wasn't even my attorney, it was Chris.

 

1:09:04.2 S4: And I was in the nurses' station at the time and Dwayne was in his morning routine doing his laps down the hallway with his walker and doing his little boxing routine and getting his exercises in, and this young woman came around the corner and saw Dwayne in the distance with his back to her and she called out to him.

 

1:09:30.1 S4: I said, "Hey, old man," and he was like... I guess he heard my voice and he just froze and stuck and he lift lifted his head up and he moved that walker and he snatched away from her, and he just started walking towards me off that, and we just stood there for, I wanna say, three or four minutes and we're just crying. He just kept saying how sorry he was and he didn't mean it and I just told him, "Don't worry about it, I'm home. I don't even care about that."

 

1:10:01.0 S4: All the medicine in the world that I could prescribe for Dwayne wouldn't even come close to the therapeutic benefit that he had received by reuniting with his daughter.

 

1:10:12.7 S4: My family always, "Oh, you just worship him like he just... " "Hello, yeah, that's my dad." That was the only... 'Cause I actually really ever hugged my dad, ever, in life. I've hugged my dad all the time, but I stayed in there hugging him for that long again.

 

1:10:29.9 Chris: We were naive in our original study in that we had patients click a box, whether their dreams were either comforting, distressing, neither or both, and really, these experiences reflect life and there's ever shade of gray in between. And when you think about it, why wouldn't Dwayne have a dream that was distressing given a life that was, at times, torture? The mistake, though, is judging a distressing dream as being without meaning or value. When you think of Dwayne his distressing dreams couldn't have brought any more meaning. He ended up reaching for his better self.

 

1:11:12.2 S4: I think by him even doing that and having all those dreams, I think that maybe that was a sign, honestly, 'cause maybe if he wasn't having all those dreams, maybe he wouldn't even had the thought about wanting to apologize. He probably, like you said, would have been stressed out or depressed, worrying about his health instead of worrying about the people who he hurt. So maybe he needed to have all those dreams. God brings everybody something for a reason. That's what I believe.

 

1:11:43.8 Chris: Yeah, so I wrote... I really enjoy the process, I enjoy the process of lecturing or whatever, so I had no trouble. And then an interesting thing happened, is I realized it was dishonest that I left out probably the most important element in my telling of this story, which is that I had a stake in this.

 

1:12:18.4 Chris: On August 6th, 1974, I was 12 years old and I was standing over the bed of my dying father, who was 42. As he lied in there, he reached out and he started playing with my buttons on my shirt and he said we had to hurry. We had to catch a plane. We were gonna go up north and fish like we had before and that was the last time I saw him. My point here is, I didn't choose this topic of dying, I feel it is chosen or followed me throughout my life, personally and professionally. I wanna end where I began. My hope was that you've heard what I have heard from the dying. Their words are compelling and they're relevant, and I hope they leave open the possibility that there's light within the darkness of dying. And then when I was at hospice, I was seeing what I had tried so hard to forget again and again and again. And I saw people who were reaching out and calling out to mothers and their fathers and to their children that a lot of them hadn't been seen for many, many years. But what was equally impressive was how at peace they looked, I knew, something profound and it was like, "Oh my God, that's what I saw."

 

[pause]

 

1:13:44.8 Chris: I wasn't expecting a lot in terms of feedback from the medical community, but I wasn't expecting the sound of crickets, which is basically what I heard. Nothing. Zero. Nada. So it was kind of shocking then to hear from the New York Times who wanted to put it on the cover of their science section. What was interesting was we didn't hear from the medical community, we heard in a loud, loud voice from the non-medical community.

 

1:14:20.2 Chris: We didn't do any of this for media attention of that sort, but yeah, it was my feeling from the very beginning, let's do this project as opposed to any other project, because this is what matters to people when we think about dying, that this is the information that people truly crave.

 

1:14:40.5 Chris: And that was just the beginning of what became this really international response.

 

[pause]

 

1:14:57.2 Chris: Far more interesting than anything we produced were people's honest disclosures about what they had witnessed and what it meant to them.

 

[pause]

 

1:15:18.6 Chris: It really was overwhelming.

 

1:15:20.7 S4: This is a topic that you don't learn about in school. And much of end-of-life care isn't taught well or taught at all.

 

1:15:33.8 S7: And so I think having some kind of template and framework to put this in, I think is incredibly helpful, and I think the proof is the thousands of responses that have occurred as a result of this being published widely.

 

1:15:49.9 Chris: If it is a process of a dying brain, in the one sense, we can try to dismiss that and belittle it as something gone wrong with the brain, or we can really stand in reverence of that as a sign of maybe what's beyond what our human brains can comprehend.

 

1:16:12.1 Chris: People talk about this notion of a good death, and I don't know, truthfully, what a good death is. I certainly know that there are good people. And we saw this all the time, in doing this documentary and in writing the book, and that not a single patient that we approached or a single family that we approached, none of them declined to participate. Now, right up until their last breath the fight to survive may have been waning, but not the desire to have relevance, to have meaning, to give back, it they all seem seemed to have faith right up until the end that their voices needed to be heard and that they mattered.

 

1:16:54.6 S4: I feel like a lot of people, when talking about this topic, really get's stuck into, "Is this real? What's happening? Is it ghosts, is it hallucinations? Like what is it?" They get so stuck on that that they don't see, it doesn't matter where this is coming from, or what it is or who it is. The most important part is that this is meaningful to patients and families, and there's just such a sort of comfort that can come with it. That if we get stuck in sort of the, "Where is this coming from," we miss the whole purpose of this phenomenon.

 

1:17:28.0 Chris: And again, the focus has never been us. The research design isn't that sophisticated. What it's doing though is shining a light on something that was in the dark.

 

1:17:49.4 Chris: What do you think your end of life dream would look like?

 

1:17:53.0 Chris: Oh dear, I was scared of that one. My end of life dream... I am in a world of trouble because there's been so many animals. I wanna end where I began. My hope was that you've heard what I have heard from the dying. Their words are compelling and they're relevant, and I hope they leave open the possibility that there's light within the darkness of dying. Look back on your own life, think of your greatest loss, your greatest comfort and your greatest wonder. Loss of someone you loved, the familiar warm hug of a grandparent, the birth of a child. What if at the end of your life at some appointed hour, the lost returned, distant feelings become familiar and meaning is restored. If any of that is true, then dying is illuminating. Thank you.

 

[applause]

 

1:19:09.0 Speaker 46: Will your father come back to you?

 

1:19:12.0 S5: Yeah. Yeah, he will.