Podcast Episode 104: Dying with Dignity
Co-hosts Peter Weir and RyLee Curtis talk to Dr. John Hendrick from the University of Utah Health about palliative and hospice care. They also talk to Jillian Olmstead and Kellie Mieremet from The INN Between, an incredible local community organization providing end-of-life care for those experiencing homelessness.
By Peter Weir, RyLee Curtis, Jillian Olmsted, and Kllie Mieremet
Jan. 30, 2023 1 hour listen (click here to listen), 35 minute read
Hello, this is Peter Weir, and this is Communivation, where healthcare innovation meets community impact.
Today's topic is dying with dignity. This topic is an important yet dark one, depending on your personality and upbringing. For a lot of us, we grew up with a lot of fear, and we did whatever we could to ignore death. We are going to explore the topics of palliative and hospice care, as well as take a close look into an incredible local community organization named The INN Between. On this podcast, there's a potential to get confused, because we do have three guests and two hosts. Riley and I are your hosts, and we are interviewing John Hendrick, who is an ER and palliative care hospice physician at the University of Utah. We are also interviewing two key members of The INN Between, including Jillian Olmsted, the executive director, and Kellie Mieremet, their community engagement manager. That's five people. I realize we are breaking some of the implicit podcast rules by having so many guests. There's a potential that this may be confusing as a listener to know who is talking. To try to counter that, we have tried to call out our names when we speak to orient the listener.
I think you'll agree with me at the end of this podcast that getting a variety of perspectives on this topic is helpful and illuminating. I have to confess at the beginning that I've been a big fan of The INN Between for about the past five years. They're located at 1216 East, 1300 South in Salt Lake City. For you locals listening to this and having never heard of The INN Between, you might be shocked to hear that address, and think “Hey, that's not far from where I live.” We will be talking about that during the podcast. I've done some tours of The INN Between and I've spent some time volunteering there. I'm impressed with their mission and their commitment to a population of people that are all too often forgotten and unseen. The INN Between, for those of you who don't know, provides medical respite and end-of-life care to people who are experiencing homelessness. For a moment, consider a person who does not have a home to live in during the last part of their life. A safe, warm place to die with dignity. Imagine somebody at the end of their life dying literally on the streets of Salt Lake City.
Does that sound like an exaggeration to you? It's not. I've worked in nearly every major local hospital in Salt Lake City and I can tell you firsthand, sending patients who are experiencing homelessness out of the hospital to either recover from major medical illness or to receive end-of-life care services is extraordinarily challenging. The INN Between fills this niche. It's the only facility of its kind in the greater Salt Lake area. In my experience in healthcare, there are precious few who are so committed to such a noble and selfless cause. The purpose of the podcast today is to both discuss the topic of death and dying at large, as well as discuss the efforts of the INN Between. We review basic definitions of terms like palliative care and hospice care and we discuss in some detail the mission and day-to-day experiences at the INN Between. We also discuss the US medical and popular culture regarding death and dying, as well as misconceptions about people who work in the palliative and hospice care fields. We touch on how our guests avoid burnout and spend a little time about the use of psychedelics at the end of life.
As I've said before in previous podcasts, I'd like your input. Please send us feedback or topics that you'd like to be discussed. You can email me at
Peter Weir: Welcome everybody. I'd like to do is start off by just going around our room and introducing our guests. Jillian, why don't you start?
Jillian Olmsted: My name is Jillian Olmsted and I'm the Executive Director for The INN Between.
Kellie Mieremet: I am Kellie Mieremet and I am the Community Engagement Manager for The INN Between.
John Hendrick: My name is John Hendrick. I'm an Emergency Physician and Palliative Care Physician at the University of Utah.
What is the difference between palliative care and hospice?
PW: We've got five people on this podcast today. As a listener, we realize it could be confusing so, Riley and I are your hosts and we have our three guests. We'll try to keep that on track as we talk. What I'd like to do first is start with defining terms. There's a lot of terms for this topic. We want to go over these somewhat carefully here. Let's start off with what is palliative care?
JH: There is a lot of confusion–there are Venn diagrams and generally palliative care and hospice, the two things we'll be talking about fit within each other, hospice specifically within palliative care. Palliative care is a type of medicine that focuses on serious illness and reaching people with serious illness. It's not always folks that are dying, but it's generally people that are dealing with a very serious issue. We try and figure out how we can help them with that issue. That can be symptom management—looking at pain, constipation, breathlessness or dyspnea, issues that commonly afflict people with very serious cancers or heart disease. We will follow them sometimes over the course of years to help with those symptoms. A part of palliative care too is discussing very difficult things with people—end of life and discussing what people might want with the time they have left. They're generally topics that people are reticent to discuss and that physicians are reticent to bring up and nurses as well. That's the basis of palliative care. Hospice is a subset more or less of palliative care that is specifically to help people that have roughly six months to live, although that's not always the case. We can certainly have people on hospice for a longer period of time, sometimes over the course of years. But in general, the Medicare definition of it is six months or less to live. A physician has to deem that you have six months or less. It involves those same pieces of palliative care, but with more focus even than probably on comfort and with a full recognition that although for all of us, life is fleeting and we all have a limited time, we know that people on hospice have a more limited time.
PW: There are other terms on this topic that also kind of swirl in and here and cause confusion. So, how is that different than something like physician assisted suicide?
JH: Yeah. So, loaded term, right Peter? Physician assisted suicide. Everybody thinks of the kind of classic cases of Jack Kevorkian. He was a pathologist, right, that created these kind of Rube Goldberg machines that allowed people to essentially inject themselves with medication that would eventually end their life. Behind that, obviously, was an idea that people have the right to die and we have the right to make decisions throughout our lives. In general, there's a subset of people that think we also have the right to make a decision about our own death. And I would put myself as one of them. Legally, of course, you can't do that. It's a very loaded thing for a number of reasons, both cultural and religious, right, of ending your life is equated to suicide. So, we've moved more towards other ways of thinking. Medical aid in dying or different ways to frame that topic but is generally reserved for people that do have terminal illnesses that are suffering.
JH: If what we're trying to do with palliative care or hospice is not super effective, we would move towards something like that. It's only available in a few states, Oregon being one of them. That was kind of early on the scene, California as well. But it's an ethical kind of philosophy more than anything that says that people have a right to make decisions about their death and physicians would walk them through the process.
PW: I'm really curious to get your guys' sense because this is as a practicing physician, I've seen a lot of this too. The confusion around these terms can cause harm. Sometimes people have assumptions about them that maybe as a healthcare provider, we don't necessarily. I'm wondering if you guys could give any examples of where the confusion around the terms can cause problems and harm.
Kellie Mieremet: Part of where I see a lot of the confusion come in is with our residents that we serve. I was getting into the concept of hospice, palliative care was the measures that were taken to care for somebody on hospice. There was a difference in the definition for me 40 years ago, right? But we have individuals that come to live with us now and they see The INN Between as that's the place you go to die. And that's not necessarily the case. We are a place where individuals can go to have that peaceful, dignified passing. But we have the palliative side. We have individuals recovering in the medical respite or recuperative care side as well. But palliative is helping them. They may still have some surgeries that they need to go through to correct one of the big issues. There may be one last round of treatment to try before they completely say, no, there is no more curative treatments. This is your chance there; this is the time to move to hospice. And even amongst our building at The INN Between, we have two different sides of the building.
KM: Residents may move between both sides from the assisted living side to the independent living side. But again, they may be moving over to assisted living for palliative care because there's more support that they can give for those chronic comorbidities and the symptoms. But when you move from one side to the other, usually individuals think that that is just their ticket to six months or less, so there's a lot that can go on in an individual's mind.
Jillian Olmstead: I would say how it can really harm the people we serve is they're relatively young in age, the people coming to The INN Between—they see it as giving up. The alternative for them would most likely be staying on the street without any treatment. So, individuals will come into The INN Between on hospice and just having a roof over their head and three meals a day and going to medical appointments may get them off of hospice onto palliative care or even we see them walk out of the building a few months later. I think the misconception that if you go on hospice, you're going to die can be very harmful.
RyLee Curtis: I think this is a really good segue to have you introduce a little bit about The INN Between and the patient population you serve and what role you play in the community.
JO: We serve individuals who are unsheltered, experiencing a medical crisis. This could be a variety of things, whether it's needing end of life care or recuperative care for things like cancer treatment, wound care, dialysis, uncontrolled diabetes. It really varies. But really simply just anyone who's unsheltered, experiencing a medical crisis.
KM: Providing that medical respite and that end-of-life care, there is a lot that goes into providing those services. Again, as Jillian mentioned, it's not just the bed with the roof and being able to meet your most basic needs of food, water, shelter and everything. But at The INN Between, we're providing that surrogate family. We're the caregiving support team. If you think about those that you know who have been on hospice, it's usually in your home or their home and you know that there's somebody there to take care of them, someone to help administer the medications and all of that stuff. When you have no one or you have no physical address, there is no one there to help you with that—that's where The INN Between comes in. Literally filling that gap for someone to be able to pass away peacefully and dignified as we talked about with the sight of another human in their eyes—to that whole Mother Teresa concept. But really making sure that people can get things taken care of. Maybe they want to reunify with their family before they die. Maybe they want to make sure that they take care of some legal things or bills or situations. It definitely is where we are helping everyone get those life domains taken care of either before their passing or as Jillian said, before they move out into hopefully permanent supportive housing. That's what we want to do is make sure everyone can meet and accomplish their life goals.
What is the origin of The INN Between?
PW: I've been a huge supporter of The INN Between now for a number of years. The way you said it is the way I see it. The INN Between fills a gap that our collective health system, in this part of Utah anyway, lacks. I feel like in The INN Between fills that niche. Is that where the name INN Between came from or what's the origin?
KM: Yeah, actually one of the early visionaries was a nurse up at Huntsman Cancer Institute. And a couple of decades even ago, watching her patients at the time having to go back out on the street or the shelter and chance getting sick again, you know, just due to germs right in their immunocompromised system, so it was a little bit of “we need a place.” That's how it started was talking and getting together with the other partners in the community, Interfaith Council, 4th Street Clinic, and asking, “Where can we house?” There's a lot between the word “INN” like a hotel, a motel. But we're more than that—we are literally an in between as we like to say it. We are in between someone getting hospice care or dying alone on the streets. We are in between someone getting cancer treatment or suffering as that continues to rattle their body. We are literally that place in between that peaceful, dignified passing or again, dying alone on the streets with no one to care for you. It's a place, but we're also the space: that intersection of humanity, life and death as well.
PW: I love it. We'll get back to INN Between in a bit, but I'm going to segue back to the pathways that you all have had to get to where you are. John, I'm going to start with you before you get started just with your professional pathway and background. Have you or colleagues at the University of Utah had experience sending patients to The INN Between? Where does it fit in in our local environment here with what the need is from a patient standpoint?
JH: Yeah, definitely. As a palliative physician and working with several hospices, we definitely have folks that are unhoused and are in need of more intensive care than they can get elsewhere. Oftentimes, they're not candidates to go to other skilled nursing facilities or other areas, so many times we have had patients there. I think all my colleagues send folks and I've been there as a hospice physician to come and see folks as well. It's definitely utilized extensively at all of the spots I work: the University of Utah, Huntsman, and the VA.
How did you get into working in this area of care and community?
PW: Excellent. That's my sense too. The way The INN Between was started was through a lot of goodwill and good people filling a niche that we lacked here. It's amazing that is how a health system in the US works, right? It's kind of cobbled together in a sort of a patchwork way. I just want to call out and admire the work at INN Between. That's why obviously, you guys are here at the table. So really appreciate it. John, do you want to give a quick background on how you got to where you are for our audience?
JH: Sure. My name is John Hendrick. I'm from Norman, Oklahoma, in the Heartland. I was raised by an engineer and a hospice nurse. My mom was a big part of my career decision. I think I was 11 years old and my parents were divorced and she would have to go on death calls to people's houses as a nurse. I was scared to stay home by myself, so she would make a pallet in the back of her Pathfinder and I would sit with my dog Quincy and sleep in the back of the car as she went to these calls. It's been a big part of my life from the time I was a little kid. Death has also been a very normal conversation for our family of recognizing that it will happen and seeing people. We would toast her patients in the evenings. So I think that was kind of the initial draw. Death has always fascinated me. It's the ultimate mystery and we all pretend like it's not going to happen, but it's absolutely guaranteed. It's the only condition. You know, diabetes, all these things that are very common are afflicting 15%, but 100% of the people you meet in your day. I think in that way it's germane to every conversation. I ended up going and pursuing comparative religions in undergrad, which is its own kind of mystery and have always been drawn to the mystics. I then moved into medicine, taking after my grandfather, who's a small-town pediatrician, and my mom obviously who is a nurse and did an emergency medicine residency and then completed a fellowship in palliative care. At this point I work at both Huntsman and the VA as a palliative physician, have helped with several hospices through the valley. I continue to work as an emergency physician, which as you can imagine, there's plenty of end-of-life scenarios there too.
PW: I'd love to come back to that conversation about the way you were brought up and your level of comfort with death, because I'd say I'm probably more typical for a person in the US which is petrified to think about it and obsess over it and worry about it. That's more how I would view it, just to be totally honest. Jillian, do you want to just do a quick bio?
JO: Sure. I grew up in North Dakota where you'd be pretty hard pressed to find somebody on a street corner suffering or panhandling. So it was a pretty big change to see the difference in a state like Utah, for how many people we have on the streets. About seven years ago when The INN Between was trying to open in its original location, there was a lot of arguing within the neighborhood that we should not be putting homeless individuals in a neighborhood, which was a very interesting thing to hear. These were people and we were supposed to find someplace else to put people besides a neighborhood. I got heavily involved because my parents were diagnosed with cancer within just about six weeks of each other and then less than a year later they passed away on hospice about six weeks apart from each other. I had a crash course in how awesome hospice care can be, especially if you have that family support system, if you have a home and insurance and how easy a passing can be when you have all those things. Reading more about it in the paper, I just was astonished that this was something we were going to argue about as humans.
JO: So, I got involved and started volunteering and quickly was hired on part time and then moved to full time, I think less than a month later. I've been there for almost six years, and I've done just about every position from volunteer coordination to HR and in March was promoted to executive director.
PW: Perfect. Thank you for the intro. One thing I wanted to ask you about the whole not in my backyard concept, I think we all can relate to that, but it does, I hear what you're saying. It's a real struggle to hear that sentiment when you want to put in something that could be so valuable for people in our community. How would you describe the community's reaction now that it's been a number of years? Where are things at today?
JO: About four years ago, we moved to our new location and had the same situation with the neighbors. There were a handful of people that kind of led a charge that we shouldn't be in this neighborhood. Ironically, we were moving into a skilled nursing facility that had 70 some patients, so it was actually going to be a lot less people in the neighborhood. They've really noticed that the neighbors have told us how much more quieter it is around there. Parking is easier. We haven't had any major incidents. And really, I don't think we've had a complaint in probably two years, maybe even more.
PW: Things just settled down.
JO: Yeah, it just took everyone seeing.
PW: I think that's how humans work—they have to live it for a bit.
JO: Yes. Fear of the unknown.
PW: Okay. And Kellie.
KM: My name is Kellie Mieremet, and I'm the community engagement manager at The INN Between. I was introduced to death and dying at a young age, I'd say. My father passed away when I was 17. I denied it every single day. Yes, our culture does not talk about death, and how it's going to happen and what's going to happen after early enough, I feel. I had a lot of denial that stayed with me after that. Then I continued to find myself seeking out ways to support my other family members. When my grandmother was going through her cancer, and then end of life, and my great aunt, and then so many other individuals where I've been with them as they've taken their last breath. That to me has been an honor that I will cherish for the rest of my life. So that kind of just got into me a little bit into service to others and helping. I dabbled between higher education and service learning and nonprofits, and then I found myself loving more than life volunteer administration and managing volunteers. I did that for six and a half years for another local nonprofit, and we dealt with child abuse prevention and education. But I had been watching The INN Between when it opened. The concept alone was something that intrigued me, because I too had set up to volunteer for different hospice agencies. I'd been with individuals, and I just thought this was so beautiful to have this space and a place for people to pass away peacefully.
What have your experiences with death been like?
PW: Thank you very much. So Riley, I'm going to call on you. I don't know if you were raised like me. It's entirely possible that you have more of a comfort level about death and with death, like the three of our guests. But what's your view?
RC: I was reflecting on my own personal experience growing up, and I was there when my grandmother took her last breath. I was young, I think I was in junior high, and it was like an experience for me that I feel now was an honor, just like you said, Kellie. I'll always remember it. I remember the sound, I remember the environment and I remember being able to hold her hand as she passed on, and just what a wonderful woman she was in my life. I think that I hold that stronger because I was with her. But on the other side, I have family members that I've married into this family, and they don't talk about it at all. And if you bring up folks who have passed on, it's almost like they don't want to talk about it because it makes them too sad. On my side, we bring that person up, we talk about her, she's still here with us, even though this was a couple of decades ago. And so it is, it's just death is triggering in a lot of ways, and it's divisive in a lot of ways. Death is a part of life, like you said, John, it’s going to impact 100% of people. How has this, the work that you do, impacted on your personal outlooks on life? And anybody can take that.
JO: I think I've always been comfortable with death. It's never seemed morbid or weird to me. And I've been with a lot of family members when they've passed away. For me working at The INN Between, with the demographics being such a younger group of people than you normally see passing away, it really has taught me how fortunate I am and how fleeting life can really be if you don't have what a middle class person in the United States has. How quickly something like diabetes or cancer can take your life if you don't have good medical care. I think for me, it just really... It just highlights how fortunate most of us are to have access to food, water, shelter, and good medical care.
KM: It's changed a lot in that I even look at... And maybe it's because we have to pack up rooms after residents pass away. Their lives, their stuff, their everything. I've gotten to the point when I prepared myself for my own surgery a few years ago, do I have my stuff in order? What if I didn't make it home? What would my family have to pick up and take care of? What would they have to figure out where my insurance documents were and all these things? For me, it's also making sure my life is in order so I'm not leaving that burden on someone else.
JH: This is John. I think those practical components we can talk about but are very important, not necessarily for you as you die, but for your family members, certainly it could be a gift that you can give to others in your life. So there certainly is the mystical part of dying and then there's the bureaucratic side of things that we have to go through too, but I think they're both important. Like you spoke to, Riley, death is something certainly in the modern Western world we can ignore. Because overall physicians have become increasingly good at staving it off, sometimes to the point of making life a bit of a farce. We will hook people up to machines and say that they're alive, but at least in my definition, right, for myself, I don't want to do those things, right? At a certain point it stops becoming life and becomes something else. I think the last hundred years in the United States we've been able to kind of push it at arm's length. So what you're talking about with your family members can be fairly normal here, but would have been nearly impossible 150 years ago.
JH: I go to the desert a lot and do a bunch of backpacking and stuff and go into the cemetery in Escalante. Three out of four of those graves are kids. That's awful, but it's just reality. And it's true of nearly every creature on earth is... Mortality is much more apparent to them. I think figuring out ways in the modern world that we can touch this space a little bit more is exceedingly healthy. There's a Michel de Montaigne quote that came up as I was thinking about preparing for this that's kind of useful, I think, but he says, he's a French intellectual and mystic, but he says, "to begin depriving death of its greatest advantage over us, let us adopt a way clear to the contrary of the common one. Let us deprive death of its strangeness. Let us frequent it. Let us get used to it. Let us have nothing more often in mind than death. We do not know where death awaits us, so let us wait for it everywhere." In knowing that it's coming, you become friends with it, you become acquainted with it and it's part of what called me to my career, I think, is sitting with people who are dying and holding their hands and touching, again, that mystery that is going to be there for all of us and that will be there for all of our family members and our dogs and our favorite trees and every creature that exists. It's very important, if you can reach that, it doesn't have to be scary.
PW: I want point out one thing that is similar to what you were describing, John, and the quote, which is this sense of if you can keep death close, it almost makes life more precious. I kind of heard that what you were saying, but it's not only the comfort level with death and not having that panicky feeling, but I think it also helps us almost live a more full and complete life. So having that sense of death there close by for me anyways, as I've gotten older, gives me the sense of the ephemeral nature of life. I feel like what it does is it makes me realize how precious the moments are, whether they're with my children or my parents or the rest of my family—each one I need to savor. I think without thinking about death—if that's not on your mind—it's easy to take all that for granted and then get to that end-of-life point, and suddenly it's a panic. I'm going to lose all this. For me personally, I'm sure it has for other people, because I've certainly read this and the quote, I think, affirms that sense of keeping death close. It almost like it enlivens our lives today. That makes sense.
JH: Yeah. There's a concept in stoicism, which is kind of having a bit of a resurgence now, but it's an ancient philosophy and kind of religion. But they talk about negative visualization and it's basically a meditative practice of what you're describing. If you recognize that you will die, then the moment I'm getting home from work, that's like every other day I'm getting home from work. But my two year old is dressed as an elephant for Halloween and my five year old is helping my wife bake. That moment is no longer just one of 10 million that I'm not paying attention to. It's one that is basically infinite. It becomes this increased awareness that allows you to be present in your own life, knowing that it will end. So that practice is exceedingly important to me.
How does the medical community deal with death?
PW: Well said. I love that image. I'd like to segue to the medical culture. The medical culture I certainly grew up in, which is different than how we're talking, I think, right now. I think from each of your three perspectives, it'll be interesting to hear. But how would you describe the medical community's way of dealing with death? I realize there are pockets that are certainly different than others, but I would just say if we could think about overall, how did we get here?
JH: I think through training as a physician and I think other health professionals, you are taught what the goal is: First do no harm. Your goal is to avoid illness or disease or death, and in doing so, consciously or subconsciously, the opposite end of healing people is dying. Which is not in fact the opposite, as I alluded to earlier. I think physicians feel as though they are doing a bad job if they allow people to make decisions that lead to their death or even if inevitably as we do, somebody has an overwhelming sepsis or a terrible infection and the writing is on the wall, there's no longer anything that Western medicine can do.
JH: It's described as a fight and then it's like you lose the fight at that point. I think palliative care and hospice training and fellowship is seeking to change that paradigm. I do think the paradigm is shifting a bit, particularly with younger physicians. It's viewed as a failure by most people and as such, we do an intense disservice to people in the last parts of their lives by kind of forcing them down a pathway that they might not want.
PW: Do you ever find yourself, your presence on a medical team or walking down the hallway, you get eye rolls or you get just this perception of, “Oh boy, here comes the death people”?
JH: It goes back to your question earlier, Peter, of saying that when you walk into the room, it can be introduced improperly. I've walked into rooms and patients' families would be like, “He's the one that wants you to die.” Part of that is because the team has introduced me as the death doctor which sounds really metal but is not in fact what I do. I'm really the one that wants people to be able to make a decision about their lives and that wants to be honest. Whenever I'm meeting somebody that has a serious illness, the most important thing to me is for them to know that other people feel funny in their tummies when they're telling you that they might not be able to cure you. I'm going to be honest with you. I'm going to tell you what's true. That might feel crappy to hear, but it's true. To sit with somebody and to be totally raw and honest in that way, I think is important. But yes, we get introduced terribly. If anybody is listening to this and you're a physician, I would ask, let us do the introduction and say, we think you need to see palliative care and then we'll come in.
PW: Jillian, Kellie, what are your experiences with the medical culture, the medical side of things in this conversation?
JO: I have a lot more limited experience and just general observations of it. But I know specifically with my grandmas, there was not that conversation of anything other than treating them until they passed away. It was really hard to watch my dad and my aunts “not willing to give up.” Using air quotes there because there was no other option. They needed to have oxygen on and they needed to be given fluids and they needed to be given their medication. It was so hard to watch knowing where I worked that I knew probably where they needed to be and it wasn't in the intensive care unit at a hospital for their last days. There's this disservice of maybe not having the conversation with the patient before they get to that point where then it's the family's decision and they feel like they're carrying on the patient's wish of we need to keep trying and fighting. I just wish we had those conversations a lot sooner. We didn't really have it in my family with my parents, but it was so much more obvious with them with their cancer and the prognosis, and they knew how many months they most likely were going to have. So it was a little more... It fell into place. But with older individuals like that where the children are fighting more for the parent, that was really difficult to watch. I think we go through it a bit at The INN Between where we get a resident who is end of life and they're coming to terms with it, but they reconnect with a family member and they haven't seen each other for maybe a decade. And then there's all this lost time and they are just clinging on to what they have. We get individuals that will come in and say, "My mom, she’s not dying. I haven't seen her in a long time, but she's not ready to go yet. She's not dying." And that's a very hard conversation to have with someone who missed maybe 10, 20 years or their entire childhood with their parent. That's kind of what we go through at The INN Between. It's more people who haven't talked to their family member in a long time and they find out where they are and they want to reconnect and we can't extend someone's life for them.
JO: That's really the only thing they want, so that's a very difficult thing to watch, although typically we have a really good group of staff that can work with the family members that come in. Granted, most people don't have family members, even if we do reconnect them, they want to keep arms distance. But it’s very difficult to have that conversation with someone who had no idea their parent was maybe coming close to end of life or their sibling.
KM: I would tack onto that when... John, you mentioned something about losing the fight—losing the fight to cancer, losing the fight to something. Part of the work I do is to help write our social media posts and some of the obituaries and what goes on our website. If there's someone that's been with us more than six months, or more than even three months, and we know them a little bit more compared to someone who may come in and with 18 hours pass away or within four days pass away, I struggle to write those first few lines of every individual's post because I don't want to say they lost the fight.
KM: Right. They didn't lose a fight. It's that the disease took over. The cancer took over. Their body had had enough. I think for me, it might just be a language thing, but it's also something I'm trying to honor the individual by. They didn't lose at anything. It took over. It consumed them. There's something about language again, introducing people and talking about what their role really is there, I think is important. It helps people just digest it in a different way. I think this is also probably in a side note or digression, but this is where doulas come in. If you've heard of end of life or death doulas, this is sort of where they're coming into play a little bit more is how we can help people really kind of soften that. This is when there is no more treatment. This is where we have to go. How can we help make this as easy as possible type of a thing? But I do really look at language and how we talk to our residents.
KM: When we are moving someone from the independent side to the assisted living side, it might be just be because they need help changing their wound dressing or because they're starting to forget their medicine and they need medicine management. It's not because they're going to die within two weeks. But we do on our property have one thing that does signify that someone's entered active dying. And that alone has also kind of brought about a sense on property and a sense for even our outside providers, because at The INN Between, we are not the hospice doctor. We are not the hospice nurse. We rely on our individuals and our hospice agencies and community members. They are the hospice people. But we'll put a blue butterfly up on the door of that resident's room on the outside and it's just to signify to everyone in the building there is a transition happening. We also use transition quite often as well, because it is a great word to talk about their process. But it's a signal to everyone that it's a time for quiet and positive memories and energies around that individual's room. So, we're trying to shift it a little bit in the language and a little bit in the visual touch points that we can impact.
What role does culture play in death?
RC: This has been a great discussion. Several of the things that all of you have said throughout today's conversation have triggered for me wanting to understand more about how different, like in your experiences, helping people transition, what role has their culture played into it and their religion? I think both. And they can be synonymous, or they could be different. We're recording this today on Halloween, which I think is fortuitous maybe about this conversation. John, when I listen to you speak, did you learn in medical school about the significance individual cultures might play in passing on in that transition? As you all at The INN Between have worked with people in different socioeconomic status and different life histories, just how important all of that is to what it means for an individual to pass on. How could one ever truly prepare as a provider to understand all of those different things? So I guess maybe my question is, how do you prepare and understand and try to be responsive to the culture and religious factors that play into transitioning?
JH: It's one of the hardest things about the job because you're meeting people where they're at. And where they're at is a culmination oftentimes of everything they have learned in their lives, culture, religion, et cetera. So medical school did not prepare me to do that at all.
RC: How about you, Peter?
JH: I think my undergraduate degree, which at the time was like, “Oh, how am I going to make money with a comparative religion degree and an agnostic worldview here?” But it's been the most valuable thing that I could have done. Because I had a Sufi teacher. I took Hebrew for two years. I have interacted with people both of many different religions and very different cultures and not exclusively talking about death, but much of religion is death, too. It's how do we approach it and how do we move forward from death. I think those were more preparative than anything else that I did in trying to approach people. It is never a one size fits all. It's kind of the I always think of the Muhammad Ali quote, "float like a butterfly sting like a bee as you're going into these rooms." Not stinging anyone, hopefully, but I'm prepared to bob and weave with them. And it's a dance and figuring out how to reach people where they're at. Some people don't want to be reached or never want to. That's another piece that we respect their autonomy and they want to, I'm using air quotes here, but “go down fighting.” That's totally their choice. Those are maybe the hardest cases because those are where palliative care doctors feel like they're failing. As opposed to the cardiothoracic surgeon or whoever that feels like when their patient chooses hospice that they're failing. When we can't reach people or help them have a good death. One of my mentors, Anna Beck, always says that you can't make people choose these things. They get to choose and sometimes they choose to have a death that is suboptimal.
JO: I would say that it's a big priority for us at The INN Between to not use that one size fits all with our residents. From the moment they walk in the door, we are talking with them during intake. Not necessarily of how would you like to die, but just getting little bits and pieces about how did you grow up? Are you religious? Then we can continue that conversation as we go. Like Kellie said, we have an end of life doula. We have chaplains. We have lots of volunteers that act as companions. And then all of us as staff are allowed to have these relationships with the residents. Any information we get, we're entering it in the bio information so that when it comes time, if they weren't willing to have that conversation, we actually have quite a bit of that information that we can come to them. It sounds like you're Catholic. It sounds like you might have someone to come in from the church and speak with you, or you're agnostic, or you're Wiccan. We have had everything. And we make sure that we accommodate that no matter what it takes, whether it's Kellie bringing in stuff from Dancing Cranes to make an altar for someone, or our chaplain to come in at the last minute and speak to someone or read them quotes from the Bible or whatever they're interested in to administer their last rites.
KM: I'd say networking is another great way, because none of us are in every religion. We do rely on our chaplains to also know other faith-based organizations or know somebody who might be a Buddhist or who might be a Shaman and help us set up an altar for somebody who is passing away. We rely on those connections heavily as well so that we can, when we experienced our first Wiccan, we could reach out to a couple of people. Do you know a Wiccan? Or do you know a Shaman that can come in and do this or something to that effect? We're working with them. Again, we also are blessed by being able to, I guess you would call it like force multiply, because we're not the actual hospice agency. At any given time, we might have Intermountain Healthcare and Home Care and Hospice serving a resident. We might have any number of the different hospice agencies coming in and serving. They also have bereavement chaplains, and so we can really work to meet individuals. I'd say one of the biggest things for me in seeing this kind of play out is with the Shaman religion. We had a house manager. He was one of our house managers, John Robb, who passed away just this January 21st of this year. John had lived at The INN Between for about three years. He was, we called him our everything, our welcome comedian and so much more. He'd get on the roof in the middle of the night in a storm if we needed him to do whatever.
KM: But John came to us as a resident. He had a medical need, but he was able to stabilize enough to become our transportation and drive residents around to their doctor's appointments. I didn't know that John was practicing Reiki and all the meditation and practices that go within Reiki and that he was teaching the Reiki prayer to other residents even about getting up and showing up for your day. But it was when John was actively declining and the blue butterfly was being placed up, everyone kind of jumped and said, he doesn't have his altar set up. He's mentioned this altar. He keeps mentioning his altar. It's not set up. I did run around and try and buy a few things and luckily we also had some other individuals as a part of our No One Dies Alone volunteer program who were practicing shaman, so they were able to come in. But there's specific ways to set up this altar. Rocks to the north, to the east, to the west, to the south. Everything sort of had its specific spot. But one of the things that I think really stood out after John's passing was we had to leave the window open.
KM: We had to leave the window open a crack. And now I see this for so many of our residents, and I think it's become more of kind of who we are and how we say goodbye to a soul. But we do leave the window open for that soul to escape. If you've been there for any of our deaths, we're actually at 109 who have been able to pass away peacefully, dignified in their bed with people around them since we opened in 2015. So even the residents that live with us now, even if they haven't been there that long, know that there will be a process. There will be a death that comes. It's not every day. It's not every week. We might have breaks, but they start to see the traditions The INN Between has and how we can filter in their culture.
KM: We had an individual pass away from Samoa, so we were able to drape his body with a lava lava as he was exited from the building. His wife had a certain song that she wanted played as she walked behind him. So we try to filter those things in and honor our veterans as well as we stand honor when the flag is draped across their body. But as far as traditions and cultures go, I think that's another thing that Jillian does really well at The INN Between, and it's our annual fundraiser, and it's Casino Night. We have a little bit of a fun theme that goes behind it, but we pick a different spot and a different culture around the world or the states that have a unique and signifying way of honoring those that have passed on. And then we immerse everyone for that one evening into that event. When I first started working at The INN Between, we had a casino night. And while it was fun, I was trying to figure out how that really aligned with our mission. So I decided the first year to pick a place. I picked a place in the US and we went with the French Quarter. So we had a night in the French Quarter, and we had a huge second line parade and we talked all about how the people in New Orleans celebrate a death, which is a little bit different than the rest of the United States.
JO: Each year we've gone to different places like Mexico. This year we did Rio. It's really fun. Coming to a fundraiser for The INN Between, you might wonder what it's going to be like. Are we going to talk about people dying all night long? We do a little bit. We talk about people who have passed away, and then we have people from that specific culture talk about how they handle dying and how they celebrate both life and death. And I think it just helps kind of spread that awareness of different cultures and takes away a little bit of that fear. We're one of the few cultures that don't celebrate a death as much as I think we really could and continue to talk about people after they passed away in a positive and not such a somber way. And I think that's something we can do in America to improve on and we hope that this event helps just a little bit, just for one night.
KM: We've done the altar and the night on the Mexican Riviera.
JO: Yeah, for Día de los Muertos.
RC: La Ofrenda.
JO: Yeah, La Ofrenda.
KM: Yes, we have done that and we do even just at some of our fun lunches on property too. But again, integrating cultures is huge for us. It is huge. And again, sometimes people don't want to accept their death or they're dying and so at 5 AM, we're calling our chaplain to come in and administer last rites. It just depends on the individual and where they are, as John's mentioned. We can't force somebody to say, I'm going to want my last rites, I'm going to want this. We've had an individual get baptized on property as well. We can't force them in that journey, but we're there to support them along the way.
What are some misconceptions people have about your work?
PW: Those are great stories. I'm impressed how flexible and inclusive how The INN Between can be. I want to keep moving the conversation forward to segue to people's misconceptions about your work. How would you guys respond to someone saying, “Gosh, if I was just thinking about death and dealing with death all the time, it sounds like a very depressing job.” How would you guys respond to that? And then also, if you could maybe also talk about burnout, because I think there's going to be an opposite view of no, it isn't as depressing as you think. For a lot of the reasons, we've already discussed during this podcast. But on the flip side, how do you deal with burnout?
JO: I have a really abbreviated way that I've always dealt with working at The INN Between. And mine has always been just talking to the staff about we have to remember what the alternative was. The alternative of them walking through our door was them suffering on the street, them not having someone that loves them for the last few days of their life. That's really where I just have to keep my head space, because it's easy to get caught up in the sadness of what they did or didn't do in their life, what they missed out on, and what could have been. I'm just constantly reminding myself that we're that alternative. For staff burnout, we do quite a few things. Like Kellie said, Intermountain is really great for us. They come in and do a grief group for us once a week. We have a chaplain that does a mental health first aid grief group for the staff and then we do our resident and staff fun lunches, which I think is a really good way to kind of bring in that laughter and lightheartedness. Whether we're doing a cowboy themed barbecue or a luau, we get everybody together for an hour to come out of their office and sit with the residents and listen to fun music and have some entertainment.
KM: Dress up.
JO: Dress up, and so we do that and we definitely try and encourage people to speak to individuals offsite. The INN Between can't help everyone through the grieving process. A lot of us do get attached to certain people, especially if they've been there for a long time. We provide as many supports as we can, but some people need to reach out to some outside supports to help prevent that burnout.
PW: John, do you have any thoughts about and if Kellie, if you think of it, if it comes back, take it away. But John, how do you deal with that? Maybe colleagues that you have or people that you trained with saying, “Geez, John, I get the ED part, the ER physician part. You're taking care of people and saving lives and the adrenaline rush. I mean, it sounds incredible. They make movies over it. But man, why do you keep, why do you stay with this job? That sounds so depressing.” What's your response to that?
JH: I think that is a very common kind of misconception. I mean, the biggest part is what we've talked about earlier for myself and that it's actually more edifying than it is anything else. There's a selfish part to practicing this type of medicine because you are encountering ultimately your own death to some extent and thinking about it in this stoic way of negative visualization and recognizing how precious all the things are to you that you have. It's an act of practicing gratitude is probably one of the biggest things that opposes that burnout piece. There are still large parts that can affect you. Working with very young mothers or things that have been traumatic and difficult for both for the patient and then for any caregivers too.
JH: I think that part kind of goes to what we might talk about in a little bit of this feeling a little bit like a calling. I think that that is somewhat protective, like not every doctor wants to do this. And I do feel kind of that a lot of my upbringing was unique and prepared me to be able to do it. This is a Game of Thrones reference, but I am the watcher on the wall here. You're the one that was called to this work. There is a feeling in a fairly spiritual religious way, almost how priests feel called to their job and do some difficult things. In doing so, I think the same thing helps me. Certainly many people can get burned out with it. I think COVID in the last couple of years has been particularly difficult as we've seen a very high number of people coming to the hospital, many of whom were not prepared. They didn't have cancer and then they were suddenly a little bit sick and then suddenly very sick and their family had to prepare. Those cases are difficult. Self care is important. Living in Salt Lake, running uphill for a couple hours will do wonders for your ability to cope. At least my ability to cope and many of my colleagues, talking it through, we have regular visits on many of our services with a wellness group and encourage people to see therapists if they feel like it's necessary. A combination, I think of all these things and those feelings wax and wane. Even some people that you're very close to, it's joyous—the process—then sometimes it's very painful and all that is a part of life.
PW: Kellie can I come back to you?
KM: Come back to me, make sure I don't lose it again. I really appreciate when we look at The INN Between as literally at the intersection of humanity. You have people who are living, who may have hit a bump in the road. Maybe there's a surgery now they're recovering or have hit that point where they are actually entering end of life. Even with our end of life and our hospice residents, if they've entered active dying, they could have a rally day or two or two weeks even. They're literally in between that, in between that humanity and that living and that death. What I like to look at is , what would the alternative be? Then I also take it to think about what we were able to give them for those last two months or those last two weeks. Again that love, that compassion, that dignity and respect. We as staff members and we ask of all of our volunteers even look at every single individual with the same level of compassion, dignity and respect. I think that really does mean a lot for our residents to have a safe place to pass away. We even do these things that are fun. Every resident gets a special birthday lunch on their birthday and they get to pick whatever it is. I mean, we've seen steal filet, surf and turf, straight up shrimp. Two cheeseburgers to share with his best buddy because one was end of life and one wasn't. Right. And so that is something for them. We can give them something exciting, even one of our residents who passed away this year, her name was Liz. When she first came in, she'd never dressed up for Halloween. Last year was the first time in her entire life that she ever got dressed up for Halloween. That can happen when you grow up in intergenerational poverty, addiction and abuse. You may never get that and you may never provide that for your own children. But Liz came in and with Augusta, she was one of the first people to get excited about dressing up. She was a scarecrow. I just think about all the exciting opportunities that Liz was able to have in a safe place and to have reconnection with even her children at the end. But Liz got to just do so many fun things and she got to be crafty and she got to decorate her room and all of these things that, again, we take for granted a lot of things.
JO: I just want to add, I think listening to Kellie talk, you can tell that she's extremely compassionate. I didn't anticipate being the executive director how much I would have to rein people in on the compassion and what would lead to burnout. I don't think that I have to tell any of our staff members to come into work. I have to tell them to go home. I have to tell them, no, you can't take a volunteer shift. That's a part of your job. You have to let someone else do that. We're currently right now going through an MBSR course, so we have an instructor teaching us mindfulness-based stress reduction. And we just did a silent retreat on Saturday.
KM: Loved it.
JO: Which was very, very interesting. But we're trying lots of different stuff. It's hard. People who work at nonprofits are typically automatically compassionate. And then people who want to work with death and dying and unsheltered individuals, there's all these layers of the people who come to us who are very, very motivated to help people. Most of our residents have gone without. It's really easy for us to spend 10 more minutes with a resident aside from going home and being with our family. That's one of the things I have to do is tell people to go home.
KM: Then we have to now tell her to go home too.
JH: I think, Peter, I can just weigh in one more thing kind of following up on what you said Jillian of the difference between empathy versus sympathy and how that can kind of weigh into burnout. So with my emergency medicine residents and certainly with our fellows, we talk about the difference there. We're walking into rooms where people have terrible cancer. And they might be 28. But we didn't cause it. You didn't cause it. This is not your fault. You are witness to it. You can be a partner with the person and as they go through the process. But in no way is it your fault. I think oftentimes people feel as though these things are their fault that are in a caregiver role. So that's one way to stave those feelings off. Then to focus on having empathy for somebody. Feeling as though you want to be present with them, et cetera, but not sympathy in that you're not sharing their true emotions. Because that's another way that you exhaust your stores of compassion and so to feel as though you yourself are going through the process. I think that's also a tricky line that people run with death and dying.
JH: To speak to MBSR and meditation. I mean, meditative practices have been used for thousands of years to both encounter death and think about it and to be present with it. But I think it is very important as a means of inculcating a more resilient pattern of behavior. It's been very important for me too.
How have psychedelics been used at the end of life?
PW: Excellent. Nicely said. So a couple of things I want to go over. The last podcast was a podcast on the use of psychedelics in treating mental health conditions. John, do you want to just give us a quick summary of the use of psychedelics at the end of life?
JH: Sure. I know Ben Lewis was previously on here. He's one of my colleagues that I've been working with. I think it's worth saying on a cultural standpoint, this is where we give thanks to the curanderas and shamans and the Carpathian Mountains and all the people who have carried these medicines forward for thousands of years, sometimes a danger to themselves legally or otherwise. But they are medicines that can, I think, profoundly help people, particularly at the end of life. Ayahuasca, one of them is translated as the vine of the dead or the vine of the spirit.
JH: There's a deep, long running tradition of these things being important for people, both with mental health problems through their lives, but specifically as they encounter death. Most of the initial studies out of NYU and Hopkins that were performed were in people with cancer and serious illnesses and have been shown to profoundly reduce depression and those sorts of things. We just finished our trial called the Hope Trial at Huntsman Cancer Institute. We have several more in the works. But that was 12 cancer patients with serious illness who were given decently high doses of psilocybin and we sat with them in a group setting. There were four folks and the data, we're just now kind of getting through the stats of that study, but we have a very statistically significant decrease over the course of the study in depression and anxiety specifically related to the end of life. Then anecdotally, immediately after, we had people come up to us and say, I didn't know I was depressed until I wasn't. And they had experiences in them that allowed them to face their own death. So I think they're interesting in that we think death is something we can't touch.
JH: It's something that we cannot reach on this side of the veil. But psychedelics seem to be something that allow you to have a dry run at it for many people. They allow them to maybe experience what it would be like to die, what they might be feeling and allow them to come to terms with it in a way that allows them to then live. To then positively live their lives for however long they have left.
PW: That's very well said. I like that concept of allowing people a chance to sort of feel like what it might feel like to die. And it might be that their ego is dying. We talked about this last time with Ben Lewis. It was a fascinating discussion. But having people have a chance to feel what it might feel like before they indeed die can give a person quite a bit of perspective. And I've talked to people that have gone through it and it's been profoundly moving for them, just anecdotally.
RC: Heading to your last question.
PW: Oh, please.
How can people prepare for death?
RC: I'll frame it up nicely for you. So, you know, my dad's getting older. He's not sick, fortunately. He's not diagnosed with cancer or anything. But I remember a couple of weeks ago starting this conversation with him. What are your wishes? What do you need to do to prepare? What can I do as your child to help you prepare? I'm asking a little bit selfishly, like what can people do to prepare? But then it's also, I think, John, you alluded to this earlier, if my dad gets it all sorted out now, and again, he's not sick for anybody listening. If he gets it all sorted out now, and I know it's a gift, right, that he can give me and my brother and then for himself so that when he is in that position, he doesn't have to be worrying about getting everything in order when really he should just be having all of the experiences we've been talking about today. So that's the last question for you all is what can people do, what types of things are in place for people to do to prepare?
JO: I'll just talk about really practically. I think it's just discussing it and getting some things down on paper. After going through, we had five deaths in our family in a pretty short period of time. And not knowing what people want was the hardest thing, which leads to people arguing with each other. There's always someone who knew that person better than someone else. And if it's down on paper, there's nothing to discuss. And so that everyone can grieve and take the time they need versus argue about whether or not there was cremation or a burial, or were they really Catholic, or were they not? Just taking the time to sit down and write some of that down and get it official, have an actual will made.
JO: We would have never guessed what my dad wanted to have his ashes spread in seven different places and then shot into space if that's possible at his time of death. So we were pretty excited when we found his will. And me and my sister, COVID unfortunately got in the way, but we're starting to plan now to take a trip to those seven places he wanted his ashes spread. It's going to give us as his kids some time to bond. So like we talked about, it can be a gift or it can be a burden and so just talking about it is huge.
JH: I would echo that. I think the most important thing, even over and on top of the paperwork, is to talk with family members that are close to you and to let them know, would you want a ventilator? Would you want to have chest compressions done? Would you ever consider dialysis so that people know medically what you would want. Nobody thinks they're going to be in this position. But again, as I stated earlier, everybody's going to be. So that it's very open. I think from a very practical standpoint, there's several pieces of paperwork that are very helpful. And the biggest one, if you're not facing serious illness in the short term, is something called an advance directive. And in Utah, the advance directive includes a medical power of attorney. But it is basically laying out your wishes, kind of those things, dialysis and CPR and all those things of what you would want. Then it's also giving legal precedent to whoever you choose. It can be somebody down the street or it can be your wife or husband or whoever. You can choose. There's a clear kind of you go through if that paperwork is not filled out, it goes spouse, kids, parents, kind of down the typical legal thing.
JH: But if you have some other idea of somebody you'd like to be your voice, if you are voiceless, then to lay that out would be helpful. For people that are more close to dying or have a very serious illness, a Polst form is very helpful in Utah. That's a physician order on life sustaining treatment. So it actually gives a physician kind of directive to anybody that might be in the community as to what your wishes would be. It can be for anything, but if you have a diagnosis of colon cancer that you know will take your life, you can put on there, I want no interventions here. I don't want anybody to put a breathing tube in. And then if you're in a facility, The INN Between or anywhere else, then when EMS comes in, if they are called, they won't institute CPR and do some of these aggressive interventions that we know won't be helpful for folks or that we know that they don't want. That gives our signature behind your wishes, so it would be worth talking to a healthcare provider about that if it seems like something that would be useful for you at this time in your life.
JH: Then I think as we've kind of alluded to throughout this conversation is I'm 38 years old and I've been preparing to die since I was 11 sitting in the back of my mom's Pathfinder. Think about it, sit with it, talk to people about it and make death your friend and know what you want and let other people know too. I think in my work you see, I've seen hundreds, maybe thousands of people that are close to dying and you see people and it's like, I want to be like that dude. That has been a touch point through my life too of meeting people and mostly in the ER to be honest because that's where I'm doing the CT scan and then finding the nodule and then realizing like this is metastatic. I'm going in the room to this person and telling them when they think they have a cold that they in fact have metastatic lung cancer. I'm always fascinated and again I'm saying that I've been preparing to do this but every time I do it it's like, oh this is going to be so hard. I mean I think I'll freak out or something but I go into these people and they are calm as cucumbers and they're like okay.
JH: And It's a very, you can tell they've been preparing maybe for 60 years and that is a gift you give yourself over the course of 60 years of encountering these things so that your final moments are not terrifying but instead interesting. It's the Peter Pan quote of “Dying will be an awfully big adventure.” That's how I hope I do and how everybody else dies.
PW: Excellent. Thank you John. That brings us to a close. I want to make sure though with our guests is there anything else that we feel like we didn't cover, didn't hit, any last messages?
JO: I don't think so. We're very honored to be here and humbled that you chose us to be a part of the conversation.
KM: I'd agree. We're just a seven years old as an agency.
PW: One quick thing. When people hear this I'm sure there's going to be a number of people are going to be like wow The INN Between sounds phenomenal. How can I help? How can I support? What do you would you guys recommend to those people?
KM: I would recommend you just hop on over to our website tibhospice.org, which stands for The INN Between, and we have ways you can help. We have anything from volunteering which is huge and we actually train individuals to sit bedside as someone is actively dying and that alone is an honor and the presence and everything that we've talked about is you don't need to be a nurse to do that so come our way and we will train you. And then it is the financial contributions again because we don't know what some years are going to bring us. It's hard to say we need money specifically for this when one year we might have way more diabetics and we need the mini fridges right so that they can maintain their medication. So financial contributions, time contributions through volunteering but also just advocacy and awareness and telling people there is another place and I would say even for our doctors in the room telling your co-workers there is a place they don't have to go back to the street. They don't have to sit here also in this hospital bed with no one around them when they pass away there is a place. So, awareness is always key too.
PW: Okay excellent. Well I want to thank all three of you for your precious time. This has been a fun hour for me. Riley anything else you want to sign us out?
RC: No just thank you all for what you do.