Podcast #127 Dying in Community: The Last Ecstatic Days of Ethan Sisser – Aditi Sethi, MD

This conversation with Dr Aditi Sethi is a heart-felt discussion of a film, a doctor’s experience of an unusual patient, and the idea that “death has value.” Dr Sethi is the type of palliative care and hospice doctor who brings full presence and full heart to everything she does, and together we reflect on the film, her friendship and doula work with Ethan Sisser, and what it means to die in community. Whether or not you are able to see the movie, our conversation describes the film so you can imagine it, explains Dr Sethi’s involvement and views, and asks the question: what would it be like to be surrounded by a loving community when we die?

To learn more…

Visit the film’s website: www.thelastecstaticdaysmovie.com

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Transcript:

Diane Hullet: Hi, I am Diane Hullet and welcome to the Best Life Best Death podcast. Today I am talking with someone who is intimately involved in a really important movie that I’m excited, that is coming to wider audiences. Today I am talking with Aditi Sethi. Hello. Hello, Diane. Aditi has been really involved in the journey of Ethan’s sister and his.

The movie that was made about his life and his death is called The Last Ecstatic Days. Dr.. Sethi and I are going to talk about the film, her experience and what she’s doing now, and how the experience with Ethan kind of was this real spark for creating something that is. New and old at the same time, I might even say.

Right. So in addition to being a doctor, I just think it’s so beautiful and it comes up so fully in the film that you’re also a musician and I just thought it would be fun if you first told us about that. 

Dr Aditi Sethi: Oh, what a, what a joy to reflect on that part of my life. Thank you. So I, I was born in India and grew up in Augusta, Georgia.

Moved there when I was three. And first started playing this Indian instrument called a harmonium. It’s like an accordion brought over by the Europeans to India and then adopted into the culture and the musical genres of the, of India. But, i,, my grandfather on my dad’s side played the harmonium and my grandmother on my mother’s side played the harmonium.

And so it seemed to be a natural affinity. I had a natural affinity to it and was mesmerized by it. So since I was four, I’ve been playing the harmonium and music has just been such an anchoring force in my life. At times where I was feeling, feeling very disconnected from myself, confused about who I am, what I’m doing here.

Music has always been that way of connecting to my higher self and. Deeper aspects of myself as well. So I studied piano when I was five, and then I was in choir, you know, growing up and it’s just been a common language and a shared language. I. Throughout my life with different cultures and different communities.

And then when I met my husband, who is a professional musician when I was twenty-three, so 20 years ago he really supported me to continue to expand my, my musical skills and abilities. And I, we started a folk band. I play the bass now. Yeah. So it’s fun. I have a wonderful relationship to music and I love bringing it to the bedside in those sacred 

Diane Hullet: moments.

Yes. And that really comes through in the film that we’ll get into talking about. I, I thought it was just lovely to see that brought forward in such a, such a profound piece of humanity, right? Like live music through our lives when at the end. So tell us about your work as a doctor. How did you get into the end of life field?

Dr Aditi Sethi: I started volunteering for hospice when I was 17 and that was a really transformative experience. To be doing that while I was a college student. Was really enlightening and I. Inspiring. And then I ended up going to medical school. I had grown up in a family of physicians and thought maybe I don’t wanna be a physician just because, you know, I wanna do something different.

And it just kept pulling me back. I love science and religion. And I ended up actually majoring in religious studies and medical humanities and combined the two. And so then when I, when I made my way through family medicine training residency and did a hospice palliative care fellowship, I found my place in allopathic medicine.

Merging the humanities with the spiritual, the spiritual part of our lives, and, and now continuing to deepen that. 

Diane Hullet: So Amazing. So how long had you been practicing when Ethan’s sister became one of your patients? How did, how did you come to meet Ethan? I. 

Dr Aditi Sethi: I had been working in an inpatient hospice facility, a twenty-six bed hospice facility here in Asheville, which I loved, cherished every, every bit of it.

And I had been doing that for 10 years before I met Ethan. And the way I met Ethan was a friend of mine had been following his live streams, which he had been posting throughout the pandemic. And he’d been following them and he said, you know this, the soul, our soul brother. He said, our brother needs our help.

He’s in an inpatient hospice in Charlotte, which is two hours away. He’s dying and he wants to die in community, and he wants to film his dying journey. Can we help him? And that’s how it started. And I feel like when I got that call, everything shifted. There was like, there was a kind of almost like, okay, I have to pay attention.

There was an alignment and a resonance with everything that I was hearing. And so we just put, put one foot in front of the other. I did a Zoom call with him and sort of did what I would do as a palliative care doc, but more. I was acting as a friend, but brought my palliative care skills, hospice, palliative care care care skills, to just really getting a sense of what was his understanding.

You can hear from other people, but really you wanna hear from the person, what is it that he really wants, and what does he know about what’s happening and what’s his understanding? And sure enough, he said, yeah, I would, well, he, he slept on it. He said, I, I would consider coming to Asheville and seeing what we could do.

And so fast forward, we got him quickly Actually, the next day. The next two days, we got him to a, the inpatient hospice where I worked, and then they wouldn’t allow us to film his dying journey. Part of that was covid. It was still covid time, but part of it was just fear. Fear that I. Something could be revealed about hospice that wasn’t favorable in the film, and they weren’t willing to take that risk.

And at that moment, I had the option of continuing to take care of him in the facility and he would’ve had a beautiful experience, or I could rally community to support him in the way he wanted to die, which was in community with ritual, with ceremony, and with the film crew present. So. That’s how it unfolded.

Diane Hullet: That’s so amazing. I mean, it really is accurate to say he, he changed your life, like he didn’t, you were still on this trajectory, but he really impacted what you were able to do and how you were able to bring his death to the public. Can you say just a little bit more for anybody who’s listening and, and really has no idea what we’re talking about.

What do you mean? Ethan was live streaming? Like what was he live streaming and when did that start and why did he become this sort of known social media figure? 

Dr Aditi Sethi: Yeah, so he had been living in Hawaii on the island and big, I think it was the big island. I didn’t know him at the time, but his journey, he said he had an intuition to leave the main to leave to go to the mainland, and he was in route in October, 2019.

When he had a stroke in the airplane and when he landed, he landed in Brooklyn where his mom was living. And his workup revealed a pretty significant size tumor, which is later diagnosed as a glioplastoma. And then the pandemic hit during his evaluations and treatments. And he was alone and isolated in hospital rooms.

And so he started streaming then and he, at first it seemed like he was mainly streaming about his. Journey with cancer, his holistic treatments, his perspectives, his, you know, journey with cancer. And then as he started to die to die, work move towards death, he started talking openly about that. So that’s really how, and, and I think one of his videos had, you know, hundreds of thousands of views and it was YouTube.

He was basically sharing, his thoughts on, on the screen through YouTube, Twitter, I think, and Facebook. None of which I was following before Facebook maybe, but not really. Twitter and Instagram. 

Diane Hullet: Wow. Wow. So the movie that was subsequently made after he died is again called The Last Ecstatic Days. And I was fortunate to see this movie a couple months ago.

And you know what? What is so striking in the movie is because Ethan was filming himself and he. Amazing little clips, little, you know, selfies, if you will. I guess that’s what you call ’em, like a selfie video. There’s so much about how alive he was and how he was embracing what was happening to him, even as it was this devastating diagnosis.

And then this. Prognosis of no cure. And so in the film, I love that not only are we seeing his last days as he’s dying, but we’re also, it’s interspersed with so much of his life and so much of his vulnerability and his joie de vivre, is that how you say it? I’m not French speaking, but like this, like joy for life.

Like he had these great sayings and this great energy and to watch. That man. Oh, in fact, there’s some incredible clips of him doing yoga, right? Like a few years before his diagnosis. So to watch that man, his beauty, his aliveness, his strength, then turn to dying in community is just a really powerful journey that we’re not usually witnessed to in that kind of a direct way that I think the film allows us a window into.

Dr Aditi Sethi: Yeah, and that really speaks to the director who’s a friend as well, Scott Kirschenbaum and his vision for the film and how he really was willing to, to film such an intimate experience and go into that space with, with a presence and, openness and then the way he weaved in Ethan’s social media posts.

And it seems like that yoga, one yoga scene really sticks in my mind and he must have liked to share before his diagnosis. ’cause I, I think that was five years before, so it’s interesting. Yeah, 

Diane Hullet: yeah, yeah. As well as the death. Well, I’m guessing, I mean, as a doctor and just as a compassionate human this experience of having this film must have really impacted 

Dr Aditi Sethi: you.

Yeah, many, many, many ways it has impacted me. I wouldn’t even know where to begin, to be honest with how, everything from letting go of my own insecurities about being filmed and getting out of the way to support someone and to serve to actually transforming my life and what I’m doing with my life right now.

So everything from the inner inner world, inner dialogue to the how it’s manifesting in my life has shifted. 

Diane Hullet: Yeah. Yeah. And I’m guessing a through line is your compassionate care as a hospice and palliative care doctor like that just, it probably deepened that or something, or, but it was simply another patient that you were simply being with.

But I have the impression you were all present more with more time than might have been typical. Yeah. So at 

Dr Aditi Sethi: that moment where I discharged him from the hospice, I became his death doula. And that shifted the whole experience for me because I wasn’t offering any medical counseling or advice nor management of his symptoms.

So the hospice team came in and did all of that, which freed me up to really be present and to really get to bring my whole self forth with the music and the ritual and the touch and the love, and the, the grief and the sorrow, all of it. And that was profound for me. And I had, I had. Had the privilege of being at the bedside with my mother-in-law, Jay’s mom, Paula Brown, and similar journeys with her.

And there’s something about that coming as a human being and not as a physician, to be honest, not just as a physician. 

Diane Hullet: Yeah. How incredible to be able to like, let somebody else hold that role while you hold this other role of holding space in this huge, huge way. Beautiful. Well, and so tell us, I mean it, it all evolved out of Ethan’s experience on the film really.

You’ve moved into a whole new project called The Center for Conscious Living and Dying, and tell us about what that is and how it came into being. Yeah. You 

Dr Aditi Sethi: know, during the Ethan journey, people kept coming up to me. Saying, can we do this for each other? Can we do this again? Can we, how do we buy a house and take care of each other?

And there was such a an aliveness and a an inspired energy that was present for everybody who was touching into what was happening. Even people that were feeling into the journey from afar or people that were not simply, but were bringing food and dropping it off at the front door. So. Anybody who was aware of what was going on was feeling the power of what was happening.

And so after Ethan died, I had a strong sense that whatever this is, whatever is being catalyzed here, is going to require more of me to, and require me to fully step in, jump in, dive into this river and. I put my notice in right away, not having a plan, not knowing what the heck was gonna happen, which is very unlike me.

Anybody who knew me would think that was, you know, it’s not a linear way to do things. It’s not the responsible way to do things. And so what. Has emerged from that surrender essentially is the center for Conscious Living and dying, which had been a passion project of mine. I was working with my business partner at the time to, to work on an educational platform around end-of-life.

But what we’re CCLD, Cacolado is another kind of phonetic name we we use, but the Center for Conscious Living and Dying. What has evolved is a nonprofit, so a traditional five-oh-one-C-three. That has community at the heart of it. And it, it involves sort of a return, a re like a, I’d say a, a healing of our relationship to death, but a return to wholeness with our relationship to death as individuals and as communities.

And then ultimately as a society. As a society. And so. Practically CCLD offers direct care to those who are in their final two months of life. Based in the Omega Home model of support, which the Omega Home Network is a network of homes that popped up during the AIDS crisis that offers twenty-four-seven care for people who are dying and usually volunteer-led, and all nonprofits.

Every state has regulation, so how they show up and how the operators different. So that’s the direct care piece. And in addition to have to be able to serve those who are dying, you have to have people and souls willing to learn the skills to be present and. Some of those people are as trained duals already.

Others were nurses. Others, it’s anybody who shows up and says, I wanna serve. So we’ve been really focused on educating our volunteers, which are now about 200 or so on that. And so it’s a, it’s a human skill. It’s a basic skill that we all have. And some people wanna do a. More formal doula training and, and make that a, a career path.

But this is for community to start returning to taking care of one another. And so that’s been a focus. And then we will have an end of life doula training program as well. And that will have an apprenticeship. Piece attached to it so people can learn the skills at the bedside. So it’s a lot. And not to mention all the programming and outreach and education and fun stuff we do for the conscious living part.

So beautiful. 

Diane Hullet: So much fun. I mean, I,, well, fun. I mean, listen to me, it’s not that it’s fun, it’s that it’s meaningful and I find a lot of joy in the meaningful piece, right? And so. Really, I can’t imagine, I mean, this would’ve been, I think, Ethan’s greatest hope, right? That his life and death would kind of galvanize something that would bring community, and I, I am struck by the direct action piece.

You know, it’s sort of. Well, I think anybody who’s interested should Google the Omega houses. What if the Omega Home Network, and you can Google that and find it if there’s anything in your area, but that direct service, how does that differ from like a hospice house or is it the same thing? Different name.

Dr Aditi Sethi: That’s a great question. So if you look at the literature, you’ll, you’ll read about hospice care and then there’s this term that’s used called the social model for hospice. I’m not using that term regularly because it’s confusing and everybody’s confused about hospice already. But really hospice, as we know, it has become a, a medical offering.

It’s reimbursed by Medicare, Medicaid Private Insurance. It is an incredible service and it has done so much for. And to support people who are dying in their families, and there are still gaps that hospice isn’t able to fill. So number one, it’s more of a medical model of dying versus a communal, spiritual, relational model or, or, so it’s more of a medical model than a communal model.

So that’s one, and you have to have special skills and certifications and licensure to practice to be involved in hospice. Of course, there’s volunteerism there too, but even volunteers are limited in the scope of what they can provide in that model. So that’s one big difference. And hospice in this model comes into the home just like it would any other resident.

So we’re just a residence. We’re extended family as volunteers, and we provide that 24 7 care that hospice doesn’t. So hospice will still be engaged and do all the medical stuff, and we get to do all the, you know. How the rest of it. And the reality is hospice comes in and touches into a family to offer support doesn’t offer that full, full scope of care on a 

Diane Hullet: regular basis.

That makes so much sense. In a way, I think sometimes people hope that what they’re getting with hospice is 24 7 care. And we have some idea that that’s what it will be, but it’s really very, at the very, very end. Sometimes someone is there for the whole amount, but so much of it falls on the family. So it’s almost like in that caregiving, like you said of the last couple months, how can the family be wrapped in with a bigger community?

And this is sort of like, you don’t have to tap your friends. Here’s a community. How incredible and, and how many beds do you have? 

Dr Aditi Sethi: So we have three in Wonder, one roof under one residence, and that’s a. agAin, state by state, the regulations are different. So if we have less, three or less individuals under one roof, we don’t have to be licensed or regulated.

We don’t charge for services, which also helps us to give us, gives us more freedom to bringing all the care that we want to Yeah. Provide. So that’s, and then there’s nothing stopping us from adding homes or. The idea is that every community will do this for their, their, their people. And so, you know, ideally the neighboring county will have one.

Right. 

Diane Hullet: Really, you’re, you’re saying this is a model for what’s possible, but it takes a huge volunteer group. Yeah. I. 

Dr Aditi Sethi: Yeah, I think, you know, depending the number’s about 86, but we happen to have more interest, so to keep it going 24 7. And some of the homes actually use CNA and RN support. They hire CNAs and RNs.

We’re trying to do it all. Volunteer I. Based and led. So we’ll see how it goes. 

Diane Hullet: Wow. So interesting. Well, I think it’s really worth for listeners to explore or go to your website and explore, and the website is ccld.community. And then Omega home Network.org. So both of those are very much worth exploring.

Going back to jumping back to the film for a minute, can you just kind of lay out, like, if someone doesn’t have a chance to see the film, what would they see when Ethan is in his dying? I, I think it was 15 days, you know, what are we watching in the film at that time? 

Dr Aditi Sethi: That’s a beautiful question. So with Ethan’s.

yOu get to really be, you get to walk alongside him as he is in his final two weeks of life and. When you see him in his dying days, you see a man who has still a lot of humor wit, charisma and also a person who’s grappling with the reality that he’s dying. So there’s some, so there’s an honesty and a vulnerability that you see.

anD then you see a community gather around him and offer him ritual and ceremony and music and sound and touch and all the holistic modalities. You can, you could want massage. Aromatherapy, acupuncture. And then you actually see him in his final moments and you, the cinematographer captured his last breath.

And, and then you see what follows interspersed with that journey. You get to see pieces of his life. So you really get to know Ethan and fall in love with Ethan. That’s how I see the film. It has a beautiful journey and window into this experience. We will all face. 

Diane Hullet: Yes. So beautifully put. I think there’s something really powerful in that moment where they have captured his last breath.

And I think death is so removed for so many of us right now that we’re so afraid of that moment. And there’s something really, for me, watching the film restful. And then I always have this profound sense when I see a person who has died like Ethan in that moment, or people in my life. Where you, I, I just have this profound experience that they are no longer there.

It’s such a profound experience of, of the body as a shell. I’ve experienced it with pets, I’ve experienced with humans, and you just can’t believe that that life force that illuminates us is gone. And then it is simply a shell, almost like a, a snail shell, like a seashell that no longer has a snail in it.

You know? You just can’t believe that moment is so. Tender. And so they are there and then they are not there. And I think it’s incredible that Ethan wanted to share that and I think he did it to demystify that for us in part, and to show us that it was not a terrifying moment. It’s just a quiet moment on the path of life.

Mm-Hmm. That’s beautiful. Yeah, in hi, in his case, not that there aren’t very complicated and difficult deaths, so I don’t mean to wrap that into some little neat bow and make it sound like it’s always simple. But 

Dr Aditi Sethi: yeah, there’s some, there’s, there’s something though about not seeing a dramatized, dramatized death, you know, just to see it for what it is.

I don’t even think there’s music playing as he’s taking his last breath. You actually just get to be with that breath. That’s profound. You know? ’cause it was what our experience of, like you say, death is hidden. And our experience of seeing death in films is it’s, it’s always, you know, either really horrific or really glorious and glorified.

Diane Hullet: It’s right. But there’s something so like, you really see how he slowly shuts down. He slowly pulls into himself and is fairly unconscious. The last, I don’t know how many hours it was, maybe two days, something like that. Yeah, about 48 hours. Yeah. Yeah. When, when I think about the number of people you know who moved towards their death in isolation.

Fear and I look at all the community that Ethan was surrounded in. You know, I just think, how do we create more loving communities like this? And, you know, in your experience, do you think that’s possible and, and what’s in the way? Ooh, gosh. 

Dr Aditi Sethi: Great question. So I,, anybody who knows me will knows that I referenced the Lancet Commission paper.

I dunno if you, are you familiar with that paper? No. So the Lancet Commission paper is a 40 page paper that came out in 2022. First, I’ll back up. The Lancet is a prominent medical journal, one of the oldest based in Europe. I think the first edition was 18 hundreds, 1890. So it’s been around, it’s reputable.

They came out with a 40 page commission paper on the value of death, bringing death back into life. And it looked at death globally. And one of the first things it says is, dying in the twenty-first century is a paradox. We have middle to high income countries where people are having aggressive medical interventions till their last breath.

A lot of oftentimes futile care, high expenditure. And then you have these places where there is no comfort meds even accessible or available. And so it, it walks us through what, what folks have identified as. Our relationship to death and our approach to death globally. But what it says is, can we, it’s a, it’s tasking each individual and each community to strive towards these five principles of the, what they say is a realistic utopia of Reimagining, how death and dying can be.

And so it outlines this for us and challenges us as individuals and as communities to rise to the challenge. So what’s getting in our way? You ask, and I’ll tell you the five principles in a minute, I think is this limited thinking around what’s possible and our individualization, like how, how individually we identify ourselves and with ourselves in our communities and how private we are personally.

And that’s what I think and that’s what Ethan taught me. Be vulnerable, ask for what you want. Don’t be afraid of reaching out. And that’s what happened. So the five principles, um, if I can remember ’em all, I tend to forget ’em, even though I love them, I speak to ’em all the time. The first one is that the social determinants of death, dying and grief are tackled.

So we look at the non-medical aspects of how, where, and why people die. And we know that, you know, some of those determinants include economic status, race, sexual orientation, all of those impact how people die. That’s one. Number two is that stories of death, dying and grief become commonplace, that we start to remember and share stories about death and dying around the dinner table, through social media, through media, through film, you know.

The third is that we remember that death is not a physiologic event. It’s a spiritual, relational experience. Number four. Is that, well, well the last one is death has value. We remember death has value And the last, the next one is the fourth one is social networks lead the way of caring for those who are dying and grieving.

So. There you have it. 

Diane Hullet: Wow. Drop the mic. I mean, that really sums it up. And even just the last one, if we can just sit with that, that death has value. That’s just really something that in dominant Western culture, we do not. We do not. It does not. It’s the opposite of value, right? We think it has, failure and fear are the two words that come to mind, but what if death has value?

Wow. Incredible. Well, I, I thank you so much for your time and your thoughts and your experience of stepping into this film in a way that you could not even have predicted when you met Ethan and said, sure, bring him to Asheville. We’ll figure this out.

Dr Aditi Sethi: Comfort with uncertainty. I think that’s something I’ve learned that I have. I do have comfort with uncertainty and death has taught me that. You know, working with those who are dying reminds me of how, what a mystery this life is and how much uncertainty there really is, even though we think there’s security and predictability.

So 

Diane Hullet: well put. So well put. And we could say death. Part of the value of death is the uncertainty in it. It is so much to teach us in the, just so much we don’t know when it’s coming, how it’s coming, what it will be like, what happens on the other side. Exactly. Yeah. Beautiful. Well if you’re listening to this in early February of 2024.

I’m excited because the last Ecstatic Days team and the team at the Center for Conscious Living and Conscious Dying is bringing this film via Zoom to several showings. And so one of those showings is gonna be with myself on February twenty-third, and Aditi will be joining me after. And so we’ll continue this conversation then and take questions from people who have watched on Zoom with us.

So February twenty-third six P.M.. Mountain time, I’m in Colorado. And then I think there’s probably a couple other showings this spring before the film really makes its grand release coming later in spring of 20 twenty-four. Yes. 

Dr Aditi Sethi: And you can sign up for a newsletter on the website and you’ll get information about upcoming screenings.

Diane Hullet: Great. Again, that website is ccld.community 

Dr Aditi Sethi: and the last ecstatic Daysmovie.com. 

Diane Hullet: Well, thanks again for your time. Thank you, Diane. Beautiful. As always, you can find out about the work I do at bestlifebestdeath.com. Thanks for listening and hope to see you at a movie showing.