Images of the Dying: A Podcast with Wendy MacNaughton, Lingsheng Li, and Frank Ostaseski

Eric 00:01

This episode of the GeriPal podcast is sponsored by UCSF’s Division of Palliative Medicine, an amazing group doing world class palliative care.

Alex 00:08

UCSF’s Division of Palliative Medicine are looking to build on their research and clinical programs and are interviewing candidates for the associate chief of research position and for full time physician faculty to join them in the in-patient and out-patient settings.

Eric 00:25

To learn more about job opportunities, please go to palliativemedicine.ucsf.edu/job-openings. Or if you’re like me and you have difficulty remember what a backslash or forward slash is. Just go to the show notes of this episode and click on the link and onto the show.

Eric

Welcome to the GeriPal podcast. This is Eric Widera.

Alex 00:53

This is Alex Smith.

Eric 00:54

And Alex, who do we have with us today?

Alex 00:56

Today we are delighted to welcome Wendy MacNaughton, who is a trained as a social worker and is an author and illustrator and author of how to say Goodbye, a book of visual journalism. She has a TED talk. She launched these draw together groups for kids, for adults, for strangers, and she has a sub stack, draw together with Wendy Mac that you can find and join and is co founder of Women Who Draw. Wendy, welcome to the GeriPal podcast.

Wendy 01:26

Really happy to be here. Thanks for having me.

Alex 01:28

And we’re delighted to welcome Frank Ostaseski, founding director of Zen Hospice Project, a buddhist teacher, founder of the Meta Institute, recipient of the Humanities Award for AHPM in 2018, and author of The Five Invitations: Discovering What Death Can Teach Us About Living Fully, something that we hope to talk about today. Frank, welcome to the GeriPal podcast.

Frank 01:52

Nice to be here with you all. Great to be here.

Alex 01:57

And we have Lingsheng Li who is a geriatrics and palliative care doc and illustrator and is currently a T32 research fellow at UCSF. You can find her illustrations online at her Twitter account, particularly those about the anti-asian hate study that we did recently and had a podcast about, as well as in annals of internal medicine. She has illustrations of clinician moral distress and coping. Lingsheng, welcome back to GeriPal.

Lingsheng 02:26

It’s so nice to be here. Thank you.

Alex 02:28

Alex and Lingsheng will be kind of a guest host today, a little bit of both.

Eric 02:32

I got some questions for Lingsheng, but before we jump into the topic at hand, which I think we’re calling images of the dying, maybe illustrations, maybe drawing.

Alex 02:41

We’ll get into that.

Eric 02:42

We’ll get into all that. I got questions. Somebody has a song or a question. Lingsheng is it you?

Lingsheng 02:47

It’s me again. And the song we have today is photograph by Ed Sheeran.

Eric 02:52

Why did you pick photograph by Ed Sheeran?

Lingsheng 02:55

It’s a beautiful song, and the reason why we chose it is really inspired by Wendy and Frank’s work, thinking about how images, photos can really be a way to preserve the memories of those we love, whether they’re present with us or not. And also just thinking about the big picture of what it’s important to show love to each other. And it’s hard, and it hurts sometimes, but it’s one of the best things that we can do for another person.

Eric 03:20

I got another question. Are you an Ed Sheeran fan?

Lingsheng 03:24

I would say yes.

Eric 03:25

Oh, yeah?

Lingsheng 03:26

Yes.

Eric 03:27

I just saw him play at Bottle Rock. He was with the offspring, so I heard him play with the offspring. If anybody knows what the offspring sounds like.

Alex 03:35

Good show, Alex.

Eric 03:36

You want to take it away?

Alex 03:55

(singing)

Lingsheng 05:11

That was really beautiful. Thank you, Alex.

Wendy 05:30

That was really beautiful.

Alex 05:32

Thank you. Thank you, Wendy. I’ll have a more professional version on the audio-only versuib. This one will go on the YouTube. Frank, let’s start with you. About 25, maybe even 30 years ago, at the Zen center in Green Gulch in Marin. I was on a retreat with Guy Micco, who’s been on this podcast several times, and he was teaching a class on death while I was in medical school. And you were a guest at that retreat, and you brought photographs of patients from the Zen center and had us view them, think about them, talk about them, and perhaps even write about them. I wonder why you did that. What is it about the images of the dying that helps teach medical students?

Frank 06:28

Well, I think a number of things. I mean, they were being eight by ten black and white photos, if you remember, and they were all taken by one person, actually, who was a volunteer at the hospice. And he originally came to suggest that this could be his gift to the hospice, to take these photos. And I said, you can’t take any photos. I said, maybe in six months or a year, then you could take photos. First you have to be a volunteer and see what it’s like to be present at the bedside. And so after about a year, I said, okay, now. And he took these beautiful photographs, which you saw. And actually they’re pictures of living people who then died. And so that’s really an important part, because it’s to help the clinicians that we were training to first of all, humanize the dying process, to see these people as living beings, not the dying, which is a kind of generalization, a term we use, which I’m not so happy with. So that’s the first part.

I first did it with Bill Moyers, actually. Bill Moyers and his journalists, and they were hard nosed journalists who just come back from, oh, I forget, South Africa, I think. And I was, the only way to really get them into the subject was to have them look at photographs. And they’re like clinicians, they’re very keen observers. And so they look for the details and things like doctors do. And so this allowed us for, it allowed people to see themselves in the people that they were serving. And when we see ourselves and the people we’re serving, then the way in which we care for them fundamentally shifts. Yeah. So that’s a long answer to a short question, but that’s how we get started. Yeah.

Alex 08:15

I want to follow up and ask a little bit more about the founding of the Zen hospice project and the Meta Institute. I wonder if you could say a little bit more about the meta Institute in particular and what it is that clinicians today can do to learn, to be more present and learn about the need to be thoughtful and compassionate in the care that they provide people with serious illness.

Frank 08:43

Well, briefly. I mean, we started Zen hospice way back in the early to mid eighties, in the midst of the AIDS epidemic. Yeah, I won’t say much more about that, except that it seemed to me that there was a natural match between people who were cultivating what I might call the listening mind or the listening heart through meditation practice, and people who really needed to be heard at least once in their life, folks who were dying. And so that was our plan. We didn’t honestly have much more of a plan than that. And we worked with primarily people who were unhoused, unsheltered, living on the streets, of San Francisco.

They had triple diagnoses, often life threatening illness, but also mental illness and usually some kind of addiction. So they were tough and diverse clientele to work with. I worked with those people for almost 20 years. The Metta Institute was an outgrowth of that. It was to share what they taught us with clinicians, and we trained hundreds and hundreds of clinicians. I’ve forgotten how, how many now over 15 years, I think it was. And it wasn’t just about tacking on new skills to the same old you. It was about you transforming. And we believe that as you transform, the way in which you did the work would transform. Any institutions in which you worked would transform. And so that was our intention. And, you know, I think we had some good success with it. Yeah.

Alex 10:09

And I want to ask if our listeners, is the meta Institute still going and if our listeners wanted to participate? Most of our audience are clinicians who care for either older adults or people with serious illness, and often both who are interested in learning more. Where can they go?

Frank 10:27

Well, the meta institute isn’t offering that, those extensive year long trainings anymore, but people can still find me, and I’m doing trainings with colleagues. My friend Joan Halifax and I often teach together. And so they can go to frankaustdeseski.com or mettainstitute.org and find out about upcoming workshops and that sorts of thing.

Eric 10:49

Yeah, and we’ll have links to both of those on our website. But it also made me think. I remember visiting the Zen hospice. It was a beautiful victorian. I remember you walked in. In addition to the place, which was beautiful, there was a cook that was making, like, you smelled food. The people there were very generous. And I’m also hearing it was a place where a lot of people came in to volunteer and somewhat different. Like, I also want to bring in my skills as a photographer and take pictures. And it sounded like there was a, you first had to volunteer first. When do you also spend some time at the Zen hospice? What got you interested in going there?

Wendy 11:38

I think it was probably nine years ago now. I was invited to be an artist in residence there. I think the seeds that Frank planted with that experience with the photographer then grew. And I think there was one person who was there before me. Josh Kornbluthe was an artist in residence. He’s a performer and a writer, and I was the second person. And I draw from life. I spend a lot of time with people. And kind of, like Frank was saying, you kind of have to hang out a little while before you before you start another role. Right. You really have to get to know somebody before you start being nosy. I think it’s like, kind of a polite thing. I spend a lot of time with people, and I draw them from life, and I have conversations.

Some call them interviews, but I think of it more as, like, hanging out in conversations, and I write down everything that people say, and I take the words and the pictures and put them together to tell a story. And I had recently lost my aunt, and she was the first person who I lost. I’d been at the bedside as she was dying, and that really had cracked my heart open. And within, honestly, a day or two of that happening, somebody from Senhos called and invited me to do this. And it was like the universe kind of saying, this is what’s happening. And it was an incredible experience. I was there for on and off for a year, twice a week for about six months. I won and ended up producing a little book called how to say goodbye.

Eric 13:14

And when you were there. So we’re going to be talking about the book, how to say goodbye. When were you. When you were there and you’re doing these. Were you doing these illustrations at that time? And did you have an idea? I’m going to have this book that I’m going to put out there in the world while you were volunteering at Zen Hospice?

Wendy 13:30

No. So something first, like, just for language sake, like, illustrations is an interesting word because typically it’s used. Illustrations are drawings or some kind of art form that’s used to illuminate, like, text, for example. Right. And I actually start with the drawings, like, the drawings themselves. I don’t call them illustrations. They’re kind of like the content. They’re the meat. They’re the point of it. And I had no idea what was going to come of it. For me, drawing is not even about the outcome of the drawing. It’s about the process of looking. Frank, what you were saying about listening and learning to listen, I think we have so much in common with that. I’m just focused on the eyes part, you know, and learning to look and learning to see.

And I went in there with no agenda of an outcome, just to look. And I think up until the time when my aunt was passing, I had been very afraid of the idea of death in my family. It was something we didn’t talk about. People just kind of disappeared, and it was set. That was it. And when I was with my aunt, I use drawing as a way to look at things that make me uncomfortable. It gives me kind of, in a way, like an excuse to look closely, and it also keeps my hands moving so that I can kind of concentrate, have, like, a little. A little bit of an activity while I’m looking. And I brought that intention over to Zen Hospice to really look and also give the opportunity for people who may not have felt seen at some time to have that opportunity as well.

Frank 15:07

Hey, Wendy, can I jump in and ask a question?

Wendy 15:09

Yeah, I’ll just keep talking. Go.

Frank 15:11

I’m curious about, like, how you develop the quality of that attention, because you came in a room and you weren’t speaking to people most of the time. You were watching, you were observing. What was that like for you, and what was it like with the person you were sitting with?

Wendy 15:28

Such a good question, Frank, because it was different at Sun Hospice than it was in other situations.

Frank 15:33

Sure.

Wendy 15:34

And I think one thing that made it so different is it felt like, well, I always wanted to ask permission, and I didn’t feel comfortable if there was a new resident there. I wouldn’t draw them without talking to them, explaining what I was doing, getting them. You know, if. And if some people weren’t ready and they said no, then that’s fine, you know? And then sometimes that would change over time because I just kept coming back. But then once somebody was open to being drawn, sometimes I’d sit and they would be lying in bed, and I’d just sit in the chair, and we’d be quiet together, and I draw. Sometimes we’d have a conversation, and I’d be drawing. There was one time that I drew somebody, and she said, well, I’d like to draw you, too.

Alex 16:31

Oh.

Wendy 16:32

Her name was Katherine. Her portrait in the book is one of my favorites because she’s actually looking directly at me. And that transformed the experience. Right. So we both had this mutual experience, simultaneous of looking, paying attention to each other, noticing the details, and being really absorbed in each other and also being seen at the same time. It’s really powerful.

Frank 16:54

Beautiful. That really goes to what I was saying earlier about this mutual exchange that occurs you also, as an artist or a keen observer, and I noticed in your illustrations or in the drawings that you often were also drawing the mundane things in the room, the flower vases that sometimes had dead flowers in them, or a painting that was on the wall, the scene that the person who was in the bed was looking at.

Wendy 17:22

It does show their perspective, doesn’t it? I think. Well, to your point about spending time in a place, I think when we first enter a place, we see the things we expect to see, we’re bringing our own perspective to something we’re seeing ourselves. It takes time and attention to really settle in and see and notice what’s actually going on. And the residents there, I mean, some are only there for a very short amount of time, but some are there for a very long amount of time. So it was a real gift to spend time in a place. And while I could never truly put myself in their shoes, at least to be next to them, you know, to be sitting. Sitting with them together and see from that perspective. Yeah, but those details, frank, like, that’s what made Zen hospice what it was, because everything was so considered. It really was. And it was such a sensual place in that way.

Frank 18:19

Very much so. But it also. You’re also speaking to the ordinariness, which is part of the dying process. We tend to think of it as the dramatic experience of life, the great adventure. And it does have some of that, but it’s also quite ordinary. All of us will go through this, and we will each experience it in our own unique way. And that’s one of the beautiful things about your book, is it expresses the unique way that people meet that experience, that sometimes very ordinary experience.

Wendy 18:48

I so appreciate you saying that. And I think that that can only really be experienced with time, because I remember when I went in at first and hostess, look, I’m as human as they come. I went in there with kind of my pencils blazing, you know, I’m like, all right, we’re gonna do this. You know, it’s gonna. I don’t even know. I didn’t have any expectation of outcome, but it was gonna be grand, you know? And then over time, it’s mundane and it’s slow.

Lingsheng 19:22

Right.

Wendy 19:22

It’s, like, pace, and. And I can imagine that. I mean, I think there was a part of me that kind of wanted to vominose this certain part, you know, because it was like, this is not. This is slow sometimes, like the days. It’s like another kind of. Another kind of time zone in there, right? And I think that ended up, once I kind of was able to step into the pace of the residents. Right. That changed the way that I saw and changed the drawings that I did. I don’t think I’ve ever been in a place like it.

Eric 19:59

And I gotta say, it also just reminds me of the entire idea of, like, slow medicine, too. Is that the pace of everything that we do in the hospital, the pace that our trainees kind of go through, it’s fast, and there’s something totally different about standing over someone, asking all these history questions versus just pulling up a chair and just sitting there. And sometimes in silence. So much so that when our fellows, like, join us in our hospice unit, we actually have to have a talk about how things are just. It’s okay to be slower here. It’s okay just to sit in silence with someone and pay attention just to the things that you see and hear around you.

Frank 20:40

Yeah, beautifully said, alex. I mean, I would say that we needed to go at the speed of nature. That’s how I used to describe it. And it sort of takes you out of what we might call TikTok times and puts you into a slightly different kind of time. And you’re describing that beautifully, and it has a different rhythm to it. And we slow ourselves to the pace of the person that we’re in contact with, the person that we’re serving in that moment. And what’s important about this for your listeners is that we begin to see that dying is not just a medical event, and we need to stop treating it as if it were just that. We need to bring the best of what medicine has to offer, of course.

And dying is too big, too profound for any one model, including the medical model. And so I think it’s much more about relationships, our relationship with each other, with God, or whatever image of ultimate kindness we hold in our life with the experience of suffering and the experience of dying itself. Yeah. Much more about relationships has been my experience. And so we have to teach clinicians the art of relationship.

Lingsheng 21:45

Now. Wendy, I have. Where we have your beautiful book in front of us, and I actually opened it to a page of the person you were describing earlier. I think her name is Katherine. She’s the one with the piercing blue eyes and the flower shirt. And I think she was the one that was drawing you as well. And, you know, I read your book multiple times. The first time, I read it really fast because I was so excited to get a hold of it, and I just wanted to see what was the content, what was inside, what drawings were there. And then the next few times, the last time I read it was actually this morning. I slowed down. I realized that, you know, each page you can just kind of hold in your hand, you can just look at the pictures, look at the details, the lines, the flower petals, the strawberries in a bowl. And that’s just so beautiful.

And I want, you know, I approach it from the perspective of someone who loves drawing. I’m also a geriatrician and a palliative care physician, so I’ve talked to families and patients about death and dying. I’ve counseled patients and families about, you know, kind of what to expect afterwards or what to expect in the days and the weeks before someone dies. And I wonder, what is your. Who is your intended audience for this book?

Wendy 23:01

I mean, it’s a great question. I think a lot of times we make things that we wish we had a, you know, and that it’s something that we really deeply need, that it will probably be of service to someone else, too. I would say it answers some questions that I had, but I think it’s what I would have liked, and it is what I still need and what I learned in that residency and with caregivers and the residents. I am still practicing today. You know, my mom has Alzheimer’s and my uncle has Alzheimer’s. And I’m trying to practice what I learned and what I included in that book with. With them in my life now.

Lingsheng 23:48

That’s really beautiful. Thank you.

Eric 23:51

All right. Like, shay, I got a question for you. What I’m hearing is like that this. This idea of slowing down, sitting with someone and paying attention to these things and potentially drawing, being able to bring that in. And art, bringing different aspects of this encounter with the patient. Encounter is probably too medical of a word, but I’m going to use it anyways, potentially to a different level, different spot. You are a artist, a drawer. You bring this stuff into your research. Have you ever thought about doing the same as Wendy? Sitting down, bringing that in with a patient encounter?

Lingsheng 24:28

It’s actually just a dream of mine to be able to do this with patients and their loved ones, to have the luxury of time and, you know, first to have that rapport and trust, like Wendy and Frank are saying, to be able to sit down and not just ask them questions, but really to observe and to listen. You know, I’ve always loved drawing, like I said before, and it wasn’t until recently that I started thinking about incorporating it into my academic and research work. More specifically, using drawing and visual art as a way to represent data, to analyze data, but also as an outcome, as an intervention, to be able to share with patients and families and to connect them on a deeper level. And I think what’s powerful about art is that it’s really a universal language.

A lot of my interest is working with chinese speaking patients and families, especially those who are monolingual, meaning they’re nothing. English is not their primary language. So just a way to show them that we care without actually saying those words, but to ask them really hard things without forcing them into a conversation about death and dying. It’s really meeting them where they are and going back to Wendy’s book for a little bit, because I have a question I wanted to ask you. Describe this book as wisdoms from caregivers. Was that your intention when you wrote this book and when you drew the pictures, or did that evolve from something else?

Wendy 26:02

When I first went into Zen hospice, that was absolutely not what I thought was going to come out of it. I thought that I focus on the residents, on the people who were dying, and share some of their stories. And I think the dynamics of the space. And over time, it became clear that this is like sometimes, you know, with art making, like, people plan things. Good luck with that. You know, if you’re really open to it, the situation’s going to offer you what it has, you know, and for your skills. And so the caregivers became the center for me and what we can learn from them. And I also never intended to make a book. It’s what I know how to do. I know how to put together stories. And I did that. And I did self publish a book because it felt so personal to me.

This process felt like I could not take it into, like, the publishing rigmarole. Like, it would be so wrong to have a marketing meeting about it. Like, that just felt bizarre. So I, my aunt, who I had drawn before and included drawings of her in this project, she had left me a little bit of money, and I took that, and I self published the books. And then I gave those as gifts. And I asked just if it was helpful to pass it on and it would have its own organic distribution as opposed to, like, the publishers kind of way of doing things. But when we ran out, I ran out and people asked for more. At that point, enough time had passed so that I felt like there was some distance, emotional distance. And I was kind of ready to just let it exist outside of my body, you know, be out in the world. And that’s how it ended up becoming the book that is available now.

Eric 27:53

Part of that book is a forward by BJ Miller, who we’ve had on this podcast many times. And I’m going to read it because I’m actually going to turn to Frank with this question, too. BJ says, this book is not pretty. Pretty is strategic and tidy. This book is beautiful, which is to say, true death is like that, full of sights and sounds and smells, of dying bodies doing bodily things. It’s not always pretty. It’s always beautiful. And it also just reminded me that the time that I had spent seeing Zen hospice, this beautiful victorian, again, they just walk inside. It’s beautiful inside. The people are beautiful. Not everything is pretty around you, but there is beauty to it. And I wonder, Frank, as you set up Zen Hospice, founded it, as you created these things, like the artist in residence, was that an important part of it? Why did you even do artists in residence?

Frank 29:01

Well, actually, I didn’t. It was something that BJ started when he was there for a short time as the director. He did it, and I think it was a brilliant idea. We did emphasize beauty all along. Beauty was a central part, one of the healing mechanisms. That’s part of the process of being with dying. I was involved in a project where we gave all the patients instamatic cameras, and we had the patients photograph their experience, including patients who were severely confused, demented, had Alzheimer’s, etcetera. And so we got their perspective, which was really interesting. And oftentimes they were shot up because the patient was lying down. And so we got pictures, partial pictures of people’s faces. We got pictures of just their shoulders, because that’s all the patient was seeing, or the commode across the room from them.

And so it began to also help us understand how to set this thing up differently from the patient’s perspective, from the resident’s perspective. So I think this is an interesting project that I would encourage Lee or others to do. Give the patient some cameras, give the patients. Let the patients, not just the caregivers, but let the patients share their wisdom with you as well.

Wendy 30:15

Yeah, I love how that goes back to the conversation before Frank, about having it be much more of a conversation and centering, like the person who’s actually dying, the person centering their experience, not our objectification of their experience. Right. It’s challenging with art making, because that’s what a storyteller does. Right. And I think there’s limitations to the traditional kinds of stories that have been done. And I’m really excited by examples like that, that you use where we kind of break those rules. Right. So that actually we’re hearing the voice of the person, not talking about the person.

Lingsheng 31:00

Wendy, going back to something you said about conversations, too, in the book, you mentioned this framework for talking to people that you love who may be dying. And that’s the five things. Wonder if you can talk about that.

Wendy 31:14

Yeah. That was shared with me by Roy Reimer, who is still working with a Zen caregiving project. And he shared with me these five things that, as he explained to me, have been used in many different cultures. Frank, you know this way better than I do, so please interrupt me if I am wrong here, if I get anything off, but many cultures all over for a very long time, I forgive you. Please forgive me. Thank you. I love you and goodbye. And these are five things that are starting points for conversations and ways of opening up conversations so that we can be fully present with somebody and say goodbye. Did I get that right, Frank?

Frank 32:00

Pretty good. I mean, they have their origins in the hawaiian culture. Actually, I believe the word is o. Pono. Pono. And they were made popular by Ira Bayak, you know, great hospice palliative care physician, and in his book, the four things that matter most, actually. Then he repeated it in several other books. Yeah. Please forgive me. I forgive you. Thank you. I love you. And you added, say goodbye. Yeah. I would add one more. And I’m saying this because I just went through a heart attack about a month ago, and I was with my son, and we didn’t quite know what was happening with me, et cetera. And I added, I’m proud of you. And I think that’s a really different thing for it’s a parental message that’s really important. In addition to I love you is I’m proud of you. And I would. So I, when I’m working with parents or people who have that role in someone’s life, I add that I’m proud of you. I think that’s important. Yeah. So, yes, they were made popular by Ira Bayak.

Wendy 33:12

Ira, absolutely. Much respect and gratitude for Ira Bayok.

Alex 33:17

And we’ve had Ira on this podcast, I think most, couple times least, maybe most recently talking about psychedelics. I have another question. I know, link shing. Looks like you have another question, too. But quickly. I remember also when I was in med school, I was doing research with Jeff Burak, HIV AIDS doctor, and doing research into experience of hospice and dying. And we interviewed this guy who lived in a single room occupancy hotel in San Francisco, and he had advanced lung cancer, and he was worried about the cleanliness of his place. He was worried about whether he could get the next another meal, safety when he went out in the hallway. And then we visited him again when he was at Zen Hospice. And although his disease was more advanced and his symptoms were worse, they were better controlled and his needs were taken care of. He was clean, he was well fed, and he was almost beatific in the bed there to get back to that beauty and talking about making amends with his son, from whom he’d become estranged.

And he even used the words that he wanted to focus on getting his spiritual house in order. And this was just such a remarkable transformation. And one of the things that did this about the Zen hospice was the environment itself. When we talked about that beauty. And the other piece that was critically important were the people who worked there, who volunteered there, who. Wendy, I noticed you included in your book. I wonder if you could say a little bit more about those caregivers and what you observed in your time at Zen Hospice.

Wendy 35:06

Wendy, they’re great people and hard workers. I mean, it’s. Do you mean about as people or what?

Alex 35:14

Yeah, I mean, in addition to including the images of the people who are dying, there are also images of the people who care for them in the book. As I recall. I did read it several weeks ago.

Wendy 35:27

Yeah, I mean, they’re a huge presence in the house, and they’re really important part of the resident’s day to day life. They are. We’re a very dedicated group of people who had incredible depth of care and experience and commitment. It is an incredibly underpaid, I think, a field, you know, with the kind of level of deep work that’s going on there. So the level of commitment there and care is just. Was so moving to me. Nurses are great. I developed a lot of friendships with the folks there. So, yeah, an essential point of view of the residents. And also, it was their words that I was sharing.

Alex 36:13

Right.

Eric 36:14

I just want to acknowledge that this question almost seemed, like, shocking to you. Like, yeah, they’re important, part of it. From the medicine side of things. We never mentioned caregivers. And, like, you try to find a caregiver’s name in a hospital chart, you just can’t. Home caregivers. Really? Yeah, yeah.

Wendy 36:35

Doesn’t make any sense.

Eric 36:36

I dare anybody to try to look up somebody’s caregiver’s name in a hospital chart. They’re just knocking.

Wendy 36:41

That doesn’t make any sense. I’m actually shocked by that. I’m sorry. I’m naive. It’s not my field. But that’s insane.

Eric 36:47

No medicine completely relies on caregivers. But we do support them. We don’t. We do nothing, though, to support them. We don’t talk to them, send them home thinking, okay, they got it now.

Alex 37:01

The built environment was important, the philosophy was important. And I think. Frank, interested in your thoughts on this? What I think the magic of Zen Hospice and why it is the pinnacle of any hospice I’ve seen in my, however long career, is the people, and not only their dedication to it, but also what they got out of it that kept them renewed to keep going back. Frank?

Eric 37:27

Yeah.

Frank 37:28

I mean, let me say something. I’m not at all romantic about dying. I think it’s maybe the hardest work they will ever do in this life. I think it doesn’t always turn out well. It’s not always beautiful. It’s messy, and it can be cool and mysterious. But most of all, it’s normal. We all go through it. As we said earlier, we should say at this juncture, because I don’t want Zen Hospice to become some, you know, perfect model. It’s not, in fact, Zen Hospice, the facility that we had that wendy’s been speaking about and did her drawings and doesn’t exist anymore. They, unfortunately, that facility closed. That residence closed, so it doesn’t exist anymore. Zen hospice project is also morphed. It’s now become the Zen caregiving project. It’s put its emphasis much more on educational work, which is fantastic. So everything comes and goes, not only of us, but also projects. And I think when we hold that, when that is not just an intellectual understanding, but when that we hold that in our bones, the way in which we are with things changes fundamentally.

And so it wasn’t that it was just a lot of nice people taking care of each other. It was people taking care of each other who understood something fundamental about the impermanence of life and brought to that a kind of fearless receptivity. And that’s what was particularly unique in the situation that you were describing. That doesn’t mean there’s no fear. There was lots of fear. It means that fear isn’t the only thing in the room. And we’re able to meet that fear with some degree of calmness, with some degree of equanimity, with some compassion and wisdom. That was the heart of Zen hospice, and it doesn’t need to exist just at Zen Hospice. Let me emphasize that there have been many, many people who have studied with me who have modeled that program and created hospices elsewhere in the country. And so let’s not get too. I want to make sure I don’t get too romantic about this. Holding in permanence is not easy. It’s just the cognitive understanding.

Eric 39:44

Is there a role for that in what you were doing there, Wendy, too, because you are taking these drawings? I was going to say illustrations. I cracked myself in my head of these individuals. Did anybody ask for them? Or did family members ever like this very intimate portrait of them to share? And kind of like the photograph song that we were hearing before putting it in their back pocket.

Wendy 40:13

No, I think honestly, maybe a couple of the caregivers were interested, but at this point, the residents of family members didn’t really, excuse my language, give that much of a shit. Like it was like there was other stuff going on and this was an experience we had. I think that to Frank’s point, you’re calling me out on all of my work, Frank, like, you know what? You know, what I’m trying to do here with this is I’m trying to hold on so much to so many things. I’m trying to get it down on paper. And I feel like my, as an artist, the best work as an artist I can do is stay in the presence of the experience of making the art. That is the time where I’m like, that’s. That’s the best of the making of the work and the outcome, the piece of work there, that’s evidence of the experience.

But so much of our culture and myself included as an artist, is about that object and holding on to that experience in this thing, publishing the book, the book becomes a thing. It has all this thing. Not like it’s really about the experience of the making of the looking, of the listening of the conversation. And I think from my perspective, the experience of making this book for me was a positive experience. The fact that it is this, I hope that it comes out as a book that I’m holding. I hope that it is useful and it’s very ironic.

Alex 41:37

Thanks so much. I think in our podcast with Thomas lynch, the undertaker from Michigan and poet, he talked about how some of the first images taken were images, photographs of people who were dying. And that was part of the use case for the camera is that you could have them with you after death. And so there’s this tension here about. Fascinating, yes, to hold on. And yet these are images of people who are dying and itself shows impertinence because they are living and they are dying at the same time.

Wendy 42:09

Frank, what’s your take on this?

Frank 42:13

I’m really thinking about your clinicians here. And they may not have Wendy’s skills to do what she did. However, the metaphor that she’s giving us is very, very important here. To slow down, to be present, to be available, to be keenly observant with the people in which we’re serving. That’s essential. And that observation has to include ourselves as well as the person that we’re serving. Otherwise, you know, it doesn’t work. Well, what this, what we’re pointing here to is that this precariousness that I’m speaking of really introduces us to the preciousness of life. And then we don’t want to miss a moment. Then it’s not just about taking care of someone who’s dying. It’s caring for life. It’s the light, the preciousness of life that we want to be part of that we all want to jump in with both feet to the preciousness of life and not miss a moment of it. And so that’s why we say that being with dying is the most life affirming thing that we could possibly do.

Eric 43:11

I wonder before, because I know we’re getting at the top of the hour. I think Link Shing has a because the question is, what do we as clinicians, as the people are listening to this podcast, how do we bring in or can we bring any of this into our lives, in our practices? Link Shen, you had an idea, didn’t you?

Lingsheng 43:28

I did. And I just want to give a shout out to wendy’s grown ups table community. I’m a part of that. A lot of my friends are as well. And I know you give weekly lessons to people thinking about drawing. And it just, it’s not just about these lessons. It’s really about the experience. And one thing, one message that you said on your website from draw strangers is that drawing is looking, and looking is loving. And I just, I think that’s so beautiful is, I think, you know, for our listeners on GeriPal, many of us are clinicians, social workers, nurses, physicians, researchers. What is one small, short drawing assignment that you would give us?

Wendy 44:09

Oh, fun.

Lingsheng 44:10

To, you know, kind of help us be present and be mindful and to experience a little bit joy and a really busy workday so that we don’t go on Twitter and doom scroll or do other things.

Wendy 44:23

Nothing good ever comes of that. So, okay, quick, quick little drawing lesson here. Most people think about drawing as something that we do to produce an outcome. I invite people to let go of the outcome and think about drawing as an action, an activity. And that is the only thing that matters. You can throw it away afterwards. Doesn’t really matter. It’s just about the experience of making the drawing. That’s the point. Once you understand that doesn’t really matter, it takes a bunch of pressure off. You have a very different experience in your body, in your breathing, in your observation, in your relationship to the thing you’re observing, everything changes. Okay? That’s the lesson. Here’s the assignment. So I would invite people to do something. This is one of the first things you learn in art school. It is technically called a blind contour drawing, but I think it’s magic. It allows us to see with fresh eyes, see beyond our cognitive bias, and actually look at what is in front of us.

Pay attention to details, notice things we’d otherwise overlook, and connect with things in a new way. So you need a piece of paper, and ideally, you need another person. I would invite you to each have a pen and a piece of paper to put that paper down in front of you. Hold your pen, look up at each other, because you’re going to draw each other. Set a timer for 1 minute, and draw each other. However, you’re going to do two rules. The first rule is, you’re never allowed to keep your pen up off the paper. Draw with one continuous line. Rule number two, never, ever, ever look down at the paper upon which you are drawing. You cannot look at what you’re drawing. You can only look at the person’s face. Imagine your pen and your eyes are connected. Three, two, one. Go.

Lingsheng 46:19

I love that.

Alex 46:20

Love it. And we did this in our division link Shang had us do this, and we did this with the palliative care research fellows. I know we’re out of time. Okay, we got to move. This wonderful exercise. Highly recommended.

Lingsheng 46:34

Maybe we can ask our listeners to also share their drawings on Twitter.

Eric 46:39

Yeah, well, I thought the whole point is not to share. Right? [laughing]

Alex 46:43

Right.

Eric 46:44

Is to be there, connected.

Wendy 46:46

I’ll tell you that. You’ll be so surprised by how awesome these drawings are, because once we let go of expectations and let our care and observation take over, we end up creating the most awesome, unexpected, free drawings you’d ever seen.

Eric 47:03

Well, Frank and Wendy, I know I could talk another hour. I love all of our topics. Would love to have you on again. But maybe before we end, maybe I’ll save this one and put as a photograph put in my back pocket. Alex.

Alex 47:35

(singing)

Eric 48:52

Wendy and Frank, thank you for joining us on this podcast.

Wendy 48:55

Thank you so much.

Frank 48:57

Nice to be with you all.

Eric 48:59

And for all of our listeners, we’ll have links to the book and everything else we talked about in our show notes, so check those out and thank you for your continued support.

This episode is not CME eligible.