EP. 146: HEALING, PRESENCE, AND COMFORT AMID CHILD LOSS

Mar 4

WITH SHEKINAH ELIASSEN

The president of the first free-standing pediatric palliative care center in the US shares her personal journey from child loss to leading a reformation in caring for children with serious illness.

Listen Now

Episode Summary

In medicine, we are trained to fight for life — to extend it, preserve it and restore it. But sometimes the goal shifts from curing to comforting. That, in brief, is the essence of palliative care. It compels us to ask what it means to truly care for a person at the end of life, not as a failure of medicine but as a profound act of love.

In this episode, we enter a space where time slows down, where every moment is cherished, and where medicine is tantamount to presence, dignity, and grace. George Mark Children's House in California is the first freestanding pediatric palliative care center in the United States, a place where children with serious, life-limiting conditions can spend their time in a home-like setting and live fully, where families find respite, and where end-of-life care is infused with humanity and meaning. It's a place that helps families navigate one of the hardest journeys imaginable, offering not just medical support, but also emotional and spiritual care.

Joining us is Shekinah Eliassen, CEO of George Mark Children's House, who has dedicated her life to reimagining how we care for children with complex and terminal illnesses. She opens up about how the loss of her first son drives her work to this day. We'll explore the essence of pediatric palliative care, the misconceptions, the difficult conversations, the small joys, and the profound impact of honoring life, no matter how brief. This is a conversation about medicine at its most intimate and compassionate.

Shekinah Eliassen’s first experience with George Mark Children’s House came in 2012. Eliassen and her husband lost their first son, Lars, as a newborn to a brain condition. They spent the last 9 days of his sweet life at George Mark. Since then, Eliassen has served as a George Mark volunteer, speaker, fundraiser, parent resource and, as of 2020, a member of the Board of Directors. She lives in San Francisco with her husband Peter and two children.
“I’m honored and grateful for the opportunity to lead this organization to provide more children and families with the same compassion and comprehensive care my family and I received,” said Eliassen. “The importance of George Mark Children’s House cannot be overstated. We have a tremendous opportunity to advance the pediatric palliative care movement and ground-breaking care with our dedicated team of professionals and volunteers.”
In this episode, you will hear about:
• 2:53 - The family tragedy that introduced Eliassen to George Mark Children’s House
• 15:08 - Eliassen’s personal experience with pediatric palliative care and how her understanding has evolved
• 19:26 - How palliative care differs from physician aid in dying
• 23:21 - George Mark Children’s House’s approach to pediatric palliative care
• 28:09 - The importance of “savouring the moment”
• 37:04 - Limiting factors that currently prevent pediatric palliative care from expanding
• 41:44 - The role that spirituality and religion play at George Mark Children’s House
• 48:17 - Eliassen’s advice to her past self on how to prepare for the life-changing experience of child loss
Henry Bair: [00:00:01] Hi, I'm Henry Bair.
Tyler Johnson: [00:00:02] And I'm Tyler Johnson.
Henry Bair: [00:00:04] And you're listening to The Doctor's Art, a podcast that explores meaning in medicine. Throughout our medical training and career, we have pondered what makes medicine meaningful. Can a stronger understanding of this meaning create better doctors? How can we build healthcare institutions that nurture the doctor patient connection? What can we learn about the human condition from accompanying our patients in times of suffering?
Tyler Johnson: [00:00:27] In seeking answers to these questions, we meet with deep thinkers working across healthcare, from doctors and nurses to patients and healthcare executives those who have collected a career's worth of hard earned wisdom probing the moral heart that beats at the core of medicine. We will hear stories that are by turns heartbreaking, amusing, inspiring, challenging, and enlightening. We welcome anyone curious about why doctors do what they do. Join us as we think out loud about what illness and healing can teach us about some of life's biggest questions.
Henry Bair: [00:01:03] In medicine, we are trained to fight for life, to extend it, preserve it and restore it. But sometimes the goal shifts from curing to comforting. That, in brief, is the essence of palliative care. It compels us to ask what it means to truly care for a person at the end of life, not as a failure of medicine, but as a profound act of love. In this episode, we enter a space where time slows down, where every moment is cherished, and where medicine is tantamount to presence, dignity, and grace. George Mark Children's House in California is the first freestanding pediatric palliative care center in the United States, a place where children with serious, life limiting conditions can spend their time in a home like setting and live fully, where families find respite and where end of life care is infused with humanity and meaning. It's a place that helps families navigate one of the hardest journeys imaginable. Offering not just medical support, but also emotional and spiritual care. Joining us is Shekinah Eliassen, the CEO of George Mark Children's House, who has dedicated her life to reimagining how we care for children with complex and terminal illnesses. She opens up about how the loss of her first son drives her work to this day, and together we'll explore the essence of pediatric palliative care the misconceptions, the difficult conversations, the small joys, and the profound impact of honoring life, no matter how brief. This is a conversation about medicine at its most intimate and compassionate. Shekinah. Thank you for taking the time to join us and welcome to the show.
Shekinah Eliassen: [00:02:49] Thank you for having me. It's a real pleasure to be with you both today.
Tyler Johnson: [00:02:53] So we would love to have you start by just telling us as far back as you want to go. Tell us the origin story. What brought you here? And? And I know this is a not an easy or simple thing, so I want to preface it that way. Nonetheless, we are grateful in the grace and willingness you're showing by being here with us to discuss, and would love to just have you start by telling us your story.
Shekinah Eliassen: [00:03:17] Happy to do that. So I'll start with the story of our beautiful little boy named Lars, which is very much so much of what's taken me to where I am today, and my family and my personal work, and the passion for the work that I'm doing. So our little boy Lars, was born in 2012. He was our first pregnancy, our first child. My husband Peter and I welcomed Lars into the world in May of 2012, in the California area, in the East Bay, and he was born having seizures. So pretty immediately we were taken to the neonatal intensive ward. And after a series of very quick tests within about 36 hours. He was diagnosed with a terminal brain condition called Polymicrogyria. Pmg and the way that they described it to us as we sat with the neonatal intensive team, that he had too many folds in his brain, his brain had malformed and he was presenting with seizures and other fairly severe condition. And it was at that point when we were surrounded by a team at UCSF Children's Hospital, Oakland Benioff of a pediatric palliative care team that started to explain to us that we were facing a really hard time ahead, and Lars would probably live for a matter of days to weeks.
Shekinah Eliassen: [00:04:37] He was born at 4 pounds, 12oz, at about 36 weeks, and he was already declining in utero when he was born. We knew he was having some decelerations and some situations late in the pregnancy, so Lars came to us with a short amount of time to go, and it was at that point that we were surrounded by an incredible team that referred us to a place called the George Mark children's House, which we had never heard of here in the East Bay. And we came to George Mark and spent lars's last nine days of 21 days being taken care of with a whole interdisciplinary team supporting us through the journey of sending our son off to a better place. And that is really now the work that I do in my work at George Mark. Flash forward 12 years. I'm now the CEO of this beautiful place, and I have a background in business and marketing and have been involved in George Mark since Lars was here with us and since he died, and support the work that we do. And really happy to talk more about all of that. But that's the very short story. I can break it down.
Henry Bair: [00:05:45] Thank you so much for that very, you know, remarkable story of how it started and where you are now. You know, it's obviously I can imagine. Well, I can't really imagine what it's like would have been like at the time when all this was first happening. I'm wondering if you can share a little bit more in terms of the context of where you were in your life, if you will take us into your your inner life between you and your husband, your family, when this was first happening, when you first learned about what was happening with Lars. What was the reaction? What did you what did you feel like was happening? What did you foresee would happen?
Shekinah Eliassen: [00:06:22] Yeah, it's a great question. I mean, we knew that things weren't as they should be in the latter weeks of the, of the term. So around 32 weeks, as I was getting measured with my pregnancy, we stopped growing, my son and I. So we knew things weren't great. We were being monitored with non-stress testing. And so at any point in a pregnancy, especially if it's your first, you know, you're learning every day as being a mom that's pregnant and how your body is changing and the baby and preparing for the arrival. And in our family, we had never had any trauma like this. This was a first kind of shock. We luckily have been blessed with healthy families and siblings and childbirth and all that. So as we were learning that things were maybe a little bit concerning, I was getting a little bit anxious. I was talking to doctors about what this could mean, but also really just hopeful based on the prognosis that we were getting. Everything was going to be okay as far as we knew. But as he continued to basically stagnate and then decline for his percentage of weight per his gestational period, we started talking to other doctors. And at that point we we induced at 36 weeks. And at that point we were a bit nervous and surrounded by family and friends.
Shekinah Eliassen: [00:07:33] And we actually met with a neurologist as Lars was going into the MRI and she was telling us, he'll probably just be a child that has seizures and that's okay. Many kids, children have seizures. There's medical treatment for that. So we were hopeful that maybe that would be the condition and we could still have a beautiful son and take care of him. Coming out of the MRI, though. She sat us down and said 70% of his brain is affected, and that is when we're sitting in her office. My husband and I, and we're literally levitating out of our chairs as she's talking to us. Just kind of the the disbelief and the the emotional kind of impact of a prognosis like that when we weren't expecting to hear that he was terminal and would only live for a few weeks. So, you know, we both had full time jobs. We were planning on taking maternity paternity leave and enjoy the time with our son. And that that changed drastically. I would say the, um, kind of the mental and emotional coping that we navigated was fortunately, my husband and I, you know, are really close and have a similar worldview and just really look to the medical team to give us advice on how we should navigate that, as well as the pediatric palliative care team, which they do have at UCSF.
Shekinah Eliassen: [00:08:50] We just look to the experts and got guidance from them. So as we entered George Mark, which is a home independent standing palliative care pediatric center and the first in the US. We were then supported by a psychosocial team that supported us through that and helped us spend time with Lars, and we took him in the aquatic therapy spa. We had some beautiful photos taken with him. We walked the grounds of George Mark. It's five acres of beautiful grounds with gardens and and we really savored the time that we had, and that was really where we could slow down. He had a lot of he was intubated. He had medical cables and cords around him at the hospital. And it wasn't until we came to George Mark. We were sitting in the family suite. We took out his cables and cords. He didn't actually need oxygen at that point, and we noticed that he had a dimple on his chin that was exactly like his grandfather that we hadn't seen, because we hadn't had the time to, like, stop and, you know, dote on him as parents do. So that was, you know, one of the ways that a place like, um, like Georgia allows families to slow down and just save for the time.
Tyler Johnson: [00:10:06] Yeah. You know, I'm struck on many levels, but at least two that come right to the fore is that we actually have only had a chance a couple of times for all the conversations that we've had on the podcast to speak with obstetricians. We spoke with an obstetric anesthesiologist once, and we have spoken with some gynecologists, though mostly not, who focus per se on delivering babies. But even from those few conversations that we have had, it becomes clear that for the most part, obstetrics is I mean, as a as a doctor who's a cancer doctor, It's, you know, almost sort of the inverse, right? Because, I mean, a lot of my patients get better, thankfully, or live for a long time and do really well. And yet it is also true that much of what I do as an oncologist is to help sort of shepherd people as they approach dying, because that is, you know, much more often than I wish it were, the inevitable outcome of cancer in some cases. But obstetricians bring new life into the world, right? It's just it's wild to I mean, you know, how would it be if that was your job was to bring new babies into the world, right? Yes.
Tyler Johnson: [00:11:22] And yet the thing that we don't talk about very much is that every obstetrician knows that there are also those exceptional cases, relatively rare, though they are, where either, heaven forbid, something goes wrong during the delivery and a baby actually dies, or where a baby is delivered and the delivery is successful. But there is some life defining or life altering or life shortening fact that becomes evident at the time of the birth. Right? And in your case, as you have explained to us, you had some lead time. So there was some awareness that, you know, maybe something was not quite right and that maybe something was, you know, was going to be different than what you had probably been expecting, you know, before 32 weeks or what have you. But I guess this is all just a way as as a father and myself, I think it's hard to understand if you haven't witnessed the birth of your own children. What a unique build up there is to the birth, and then the way in which the birth itself functions as this sort of singular in all of life culmination. I mean, it is literally the dawning of a new, unique life into the world, right? With DNA that is literally unique in the history of the planet.
Tyler Johnson: [00:12:52] And so I guess I'm just saying all of this to reflect and say how just dizzying and devastating it has to be to have all of the trappings of all of this, right? The grandparents or whatever, either on the phone or in the waiting room and all the, you know, if you're belong to a religious community, everybody's fussing about what's the, you know, gender going to be and how big and how much do they weigh. And everyone's waiting for the vital statistics through the phone tree. And, you know, it's like a whole thing, right? Yes. And so this is like all primed and it's like there's this beautiful thing just waiting to expand and unfold. And then instead of the, you know, fussing of the mother in law and the finding the right blanket and the whatever we're talking about ET tubes and MRIs and blood oxygen levels and neurological problems and and then after all of that, a neurologist to sit down with you and explain how long your baby is likely to live. I mean, just trying to put myself into that moment for a moment. I can only imagine how hard that must have been.
Shekinah Eliassen: [00:14:07] Oh, I appreciate that. I often say, you know, the game musical chairs. Well, I had 6 or 7 girlfriends that were all pregnant at the same time. We had a baby showers within weeks of each other, and then after it's all said and done, all my girlfriends are holding babies and I'm the only one without, you know, without a baby. And it's like how? And that's not you know, he lived for beautiful 21 days and we savor the days and we're so grateful we had that time. But the amazing thing is, once you're in this community of women or families, fathers, mothers who have lost a child, you realize there's a lot of people, and it's a sisterhood, brotherhood, you know. And it is special to be able to find partners, friends, to help each other through that. We have a program at Georgia mark around grief partners, where moms can partner together to just talk about what it's like being a mom that's lost a baby, because once you're in that community, you're in a special community, and you need to have an outlet for that. So it's a unique circle, but it's important to have the space to share it with others.
Henry Bair: [00:15:08] I want to ask a little bit about your initial experiences with palliative care. Now, of course, this is the sort of the centerpiece of your work now is palliative care. But if I'm being honest, I think most people who haven't personally experienced palliative care or seen palliative care or who are not in the medical community probably know very little about palliative care. And for us, you know, we've had the pleasure of speaking with a pediatric palliative care doctor actually on the show. So we have a little bit of an idea of what it is. But still, you know, every time I think about pediatric palliative care, there seems to be something very oxymoronic about that, because, of course, palliative care is when you think about older patients or terminally ill patients, it seems a little bit more intuitive. Yes, they of course, they need a focus on quality of life. But when it comes to children, there's just something very, you know, very devastating about the that conception. I'm wondering when you first met with this pediatric palliative care team, it sounds like you had a wonderful experience with them. What was your understanding of palliative care and how has your understanding of palliative care evolved since then?
Shekinah Eliassen: [00:16:17] I love this topic and I'm so happy to have the space to bring more visibility to palliative care, because it is such. It is such a powerful part of the program that we experienced and what every family should have access to as they're going through a life limiting diagnosis and potentially a terminal condition. So I'd never heard of palliative care before I was in it, which is often the case. Right. And there was a palliative care nurse at UCSF Children's Hospital Oakland who met with us and started to explain to us kind of what it was that it's really a holistic, interdisciplinary support system for families, patients, children who have a life limiting diagnosis or terminal condition. And it's meant to ensure quality of life. That's really what it's about, right? It's about ensuring surrounded network of support to help ensure quality of life, whatever that looks like for the journey that that patient, family, child is encountering. And of course, when you hear it that way, you know, if you're in that situation, of course it's it's, you know, sign me up. What do I need to do to get this kind of support? But as I've learned and now been leading George Mark House for the last two and a half years, it's become more clear to me that the education around palliative care is needed in the medical systems and just in general in society, because sometimes I believe it has a scary negative tone to it, because people just think, oh, these are the people that are going to talk to me about dying or, or this is dying, and it means so much more than that, because often palliative care extends life and that the quality of life actually gets better.
Shekinah Eliassen: [00:17:54] The days are more full, the experiences are more rich, the memories are more tangible, and we're less focused on treating, curing, you know, preventing the disease and more about living and having memories and experiences. So that is something we can talk more about. But how do we get palliative care to be elevated in our medical systems? I'd love to hear your perspectives on that. How do we make it to be more well known in the medical schools? Every medical school ideally would have palliative care training and social workers and nurses and doctors and all of that because it's so powerful. And then the work that we do at George Mark, that's really we are pediatric palliative care Center, and we have interdisciplinary team that supports families and children with a life limiting condition. They may not be dying. We have children that come here and stay with us. We have 24 over seven nursing care around the clock. Many of the children and young adults. We take children from birth to their 25th birthday, and many of the kids just come for camp. Basically, we have music therapy, aquatic therapy, animal therapy, ponies coming in and visiting children in their wheelchairs. It's a joyful experience for the kids and the families that are here for respite care, and even for the children that are here for end of life care. I can tell you some stories about families that come here, but the siblings are also getting the support of our community, of doctors and nurses and our medical team. And that's really about lifting the whole family up when they have a child that has a life limiting diagnosis.
Tyler Johnson: [00:19:26] Yeah. You know, I'm so struck because you may be aware, but, uh, the very prominent and well-regarded physician author Atul Gawande wrote a book called Being Mortal. And one of the things that is so striking to me about that book. So Atul Gawande is a cancer surgeon, and yet he's very open in the book. And in fairness, the book is now, I don't know, probably 10 or 15 years old. But still, he's very candid in the book. So the book is sort of framed within or around the journey of Atul Gawande's father, who's diagnosed with a tumor on his spine. And then sort of. Atul Gawande's journey accompanying his father as he goes through the various stages of being treated for the cancer and what have you. But what's so striking to me is that Atul Gawande is very open in that book about the fact that even as a cancer surgeon, when his dad was diagnosed, he. Atul Gawande didn't know very much about palliative care. I mean, it almost it's been a while since I read the book, and I don't want to overstate the point, but in effect, the feeling of it is that he kind of didn't know that was a thing. Right? And this is as a cancer surgeon now that's, you know, different than a medical oncologist, obviously.
Tyler Johnson: [00:20:42] Usually the surgeons are called in at the beginning when you're trying to get rid of the cancer, right? So it's understandable in that sense. But it's just to say that I think it really is important to recognize that many people, especially Non-doctors, don't know that this is a thing. Right. And I think it's also important to just recognize, you know, a lot of press has gone over the last year or so to the, for example, in Canada to the medically assisted aid in dying movement. And the reason I bring that up is just to say that I think it can be easy to conflate those two things. Right? So in Canada, they actually have physicians who I'm not trying to be dramatic, but it's just factually the case that they have physicians who kill people, right? They facilitate their deaths. I don't I'm trying to think of a more diplomatic way to say it, but that's what they do. Obviously with the, you know, because the patient has asked for it and everything else. But nonetheless, I mentioned that because I think that there are a lot of people in the United States who still think that palliative care doctors here, that that's what they do, or they kind of do that or it's something close to that.
Tyler Johnson: [00:21:49] And it's important to recognize that that is not true in at least two really important ways, right. So the first one is that the physician Aid in Dying program that is set up in Canada, there's really no analog to that in the United States. There are places where physicians can write lethal prescriptions, but they have to be administered by the patient themselves. And it's much, much, much stricter regulations than in Canada. But the bigger thing is to say that palliative care doctors, that's actually not most of what they do, or in some cases that's not any of what they do. Right. I know that, like, for example, our palliative care group cannot be the primary prescribers for those types of medications, even though there is a legal framework for that in California. And so I think that one of the things that is really important is to decouple the idea of palliative care from physician aid in dying, so that people are not scared away from palliative care doctors because they accidentally think that palliative care doctors are doing this other thing that they're not really doing.
Shekinah Eliassen: [00:22:52] I think that's true. So much of my experience and our experience here at George Mark is around just understanding the family, the child, meeting them where they are, understanding what their wishes are, what they hope to experience, what their hopes are for their child and their time, and then working together. It's a really collaborative, conversational experience supported by medical practices, really about reducing pain.
Henry Bair: [00:23:21] You've shared with us some of the activities that George Mark engages in to support families, patients, families, parents, siblings. And, you know, I think even even in those descriptions, you're sharing a lot of the essential aspects of what palliative care even means, right? It's multidisciplinary. It involves support for the physical ailments, for the spiritual, for the psychosocial elements, not just for the patient, but also for the family. So that's really, really helpful and valuable to know I think. Now, I think would be a great time for you to be more comprehensively discuss the philosophy is of George Mark children's House and why you believe this is critical. You know, it's independent. It's stand alone. Like, why is that the case and why is it something you believe in so much that you are now the CEO of it?
Shekinah Eliassen: [00:24:10] Well, I believe in it because I experienced it first and foremost. And it's an incredible gift that we give to families to have the opportunity to shepherd their children in their journeys with life limiting diagnosis. So the philosophy I have just benefited from was founded by Doctor Kathy Hull, who was a clinical psychologist at UCSF, on the oncology floor in an interdisciplinary team supporting children with cancer. And she was doing the rounds, you know, year after year with her team supporting families and children with cancer diagnoses, many of whom lived and went on and, you know, have continued to thrive. But some who she saw dying in the hospital. And it was at that point that she said, my goodness, there's just got to be a better way for families and children to encounter these moments, these hours, these days, sometimes weeks when the child is declining. And she looked into the US and at this point there were no children's palliative care centers, there were no this is in the late 1990s. There were no hospices for children, not not one anywhere in the 50 states. And so she looked externally and saw that in the UK there's more per capita than anywhere in the world. And so she went to the UK, visited research met with some of the centers there.
Shekinah Eliassen: [00:25:28] The Helen and Douglas House is a beautiful center outside of Cambridge, which I've also visited and modeled after. Those homes where anything more than ten bed facility starts to feel like a hospital. And that really isn't our model. Hospitals serve incredible purposes, but our model is to feel like a home for families to be able to come here and visit and spend time with their children. So we have A99 bed facility on five acres. We have 24 over seven around the clock nursing care and an MD and a psychosocial team to support the experience. We provide services for children who have life limiting diagnosis, respite care and end of life care. And we have two family suites, six patient rooms for individual patients. And then we have a bereavement room, which could also be an end of life room. And in the family suite it's a full service suite, kitchen, bathroom and a bedroom and a living room. So families come and stay and have for multiple weeks with their child that's dying. We've had siblings stay with them. We've had dogs stay in the room with them, put folks, brought their pet bunny and stayed with them. So it's meant to be a place where families can come for the duration of the of the experience, for the end of life.
Shekinah Eliassen: [00:26:46] And we have an incredible team of volunteers. Volunteers very much are critical element of the incredible experience that families have here that take our patients out in the garden. We have horticulture therapy and the patients are getting really lovely every day, really. We focus on being the best day that we can provide for those kids, and the volunteers bring a lot to that as well. So the model is independent currently and we rely on incredible support, philanthropy from individual donors and grants about 80, 75, 80% of our operating budget comes through donations and a little bit from government funding local. But there is a major opportunity to grow the visibility around this type of care and to figure out exciting partnerships that can allow more types of what I would like to call a continuum of care in pediatrics, from diagnosis hospital to stays like this, where if a child has a life limiting diagnosis, they can come and stay at George Mark referred to us by the hospitals in a continuum kind of standard of care for pediatrics. Again, many of our kids here are not dying. They have a life limiting diagnosis, and they need around the clock clinical support because of their acuity and their, um, the severity of their condition.
Tyler Johnson: [00:28:09] Can I ask a question? And I recognize, as you said, that, I mean, all of us are dying, but not all of your patients are imminently dying, right? Or all of your guests are imminently dying. But I imagine still that for many of the people who are there, even if death is not imminent, it's still something that is more foregrounded in childhood than it is for many children. Right. I think for most children, you know, they might as well be immortal, at least for all of the thinking they do on the subject. Right. Like, that's one of the ways that we effectively define childhood is that it's a time when you can go jump on a skateboard and ride it down a hill way too fast, because you have no sense that that could be a problem and that you could run into a car or whatever. Right.
Shekinah Eliassen: [00:28:55] Absolutely.
Tyler Johnson: [00:28:56] But for people who are staying at your place, both the guests themselves and their families, there is probably always a sense of that. And so I wanted to read a short excerpt. This is actually from a magazine article, but it's paraphrasing what he also wrote in a book. So there was a neurosurgeon at Stanford named Paul Kalanithi, who in effect, diagnosed himself more or less during his neurosurgery residency with metastatic non-small cell lung cancer, and then he got onto therapy and did well for a time. He began writing a book about his experiences and then basically died, sort of as the book was being finished or even before the book was finished, sort of depending on how you want to think about it. But in any case. So he is in the very unusual position of being a relatively accomplished author and a very accomplished young doctor. At the same time that he learns that he has cancer. So at one point he wrote, this time for me is double edged. Every day brings me further from the low of my last cancer relapse. But every day also brings me closer to the next cancer recurrence and eventually death. Perhaps later than I think, but certainly sooner than I desire. There are, I imagine, two responses to that realization. The most obvious might be an impulse to frantic activity, to live life to its fullest, to travel, to dine, to achieve a host of neglected ambitions.
Tyler Johnson: [00:30:29] Part of the cruelty of cancer, though, is not only that it limits your time. It also limits your energy, vastly reducing the amount you can squeeze into a day. It is a tired hare who now races, but even if I had the energy, I prefer a more tortoise like approach. I plod, I ponder. Some days I simply persist. And I have to imagine that for both the children who are the primary occupants of the house, and maybe even more so in some ways for their parents, this question of how to negotiate limited time and how to think about how to fill that time has to always be on their minds, or at least not far from them. And I imagine similarly that you as the person who helps to run the place, that in a sense maybe you don't articulate it this way, but that one of the primary concerns all of your staff must have is how to help the people who are there make the most of the time. That remains to them. And similarly, I imagine that was very much on your mind when you were there for for nine days. Can you talk a little bit about how do you and your staff and the people who are there think about time in the context of that quote.
Shekinah Eliassen: [00:31:51] Such beautiful. I mean, really time is the is the most valued gift we have in life, right? How we choose to use our time, no matter where you are in that journey of life and and really, I see our team here wrapping around the families, the siblings, the patients with the gift of time. And in that sense of customizing the experiences here. So our child life therapist, Kyle, she meets with the family and asks them what they want to do while they're here. We have a partnership with a couple of different incredible animal therapy groups, and she asked, what kind of animal would you like to have come? We had one little boy who wanted to see a baby cow. We've had, you know, puppies come and we've had a chinchilla. And so she will customize if she can, you know, the visit while they're here. How do they want to spend their time and really help them savor it? We have a credible psychologist and a chaplain who meet with the parents to talk about the journey that they're on, asking them questions about what they want to do while they're here. We took Lars up into the redwoods on a walk with him because we wanted because we're runners, and we wanted him to go and see the redwoods. What we do here is allow families to think about, gosh, I want to take my child to the ocean.
Shekinah Eliassen: [00:33:10] They take a trip to the coast and they come back. And those are really the the intangibles that extend time in a way, because you are allowed to go and experience something that stays with you versus being potentially in the four walls of a very clinical setting, like a hospital. Getting out into the fresh air. And those are the memories that I think stick with families beyond the time that the child is with them. I'll give you two other examples. One is we have a couple of beautiful fountains here, and we had a beautiful teenager here recently, a twin who was dying. She wanted to go and sit by the fountain, so the whole family moved the hospital bed out into the sunlight by the fountain. And the family just sat around her having lunch, being their socializing, just being with her in the sunlight by the fountain and soaking it in. And that is actually where she passed. Um, they had an afternoon together out there in the sunlight, and she passed there by the fountain. So again, it was extending the moments that you have, and I think now they'll look back on, you know, those last hours they had with her because that was one of her wishes. Another fun example is that we had a little girl here and her two younger siblings, and she had a brain tumor.
Shekinah Eliassen: [00:34:28] We do have more and more cancer patients coming here now. We launched a cancer program about 18 months ago, and we're fundraising just to ensure that we can continue to have families come. All the children that come here, families never see a bill for our services. So we again, a philanthropy grants and a little bit of government funding. Families never see any bill for our services and we are getting more and more cancer referrals. Some are in remission, some are here for end of life. And this little girl was here with her two younger sisters in August of this past year of 24, and all three girls had their birthdays in August. So Big Sister is dying with the brain tumor. Little sisters had their birthday parties in the garden, brought their friends and families in and had a big celebration in the garden. They brought their pet bunny and their dog and their rollerblading and having bubble machines out in the garden while their sister is going through her last days here and again. That is how savoring the moments and savoring the time is really important. I also want to just comment a little bit back on one thing about just the conversations about death. So one thing that when the families come here to your point, some know that their children may not live into their teenage years.
Shekinah Eliassen: [00:35:49] Some know that the death is sooner. And a lot of our pediatric palliative care team, part of their role is to sit with the families and start to talk with them about what death looks like, both the emotional side of it, but also the physical side of it. You know how it will come and how it with my son in particular, you know, he died a few times. His brain stem kicked in and he started breathing again. We thought he had passed and then he started breathing again. And we were, you know, prepared to some extent. I mean, you're never prepared, but to some extent for that. And that is, you know, so valuable to have those conversations and you don't want to hear them. And, and again, our team asks the family, you know, you know, could be days. It could be hours when you know and start to talk those conversations. But that's more in the micro. But even in the macro, us having this conversation now that families will and do experience imminent death, we all will experience death. And it's important to have these conversations among medical professionals, among all of us to help each other navigate that, because it's the one thing that is true that we all will die as we know.
Henry Bair: [00:37:04] Thank you so much for that beautiful encapsulation of what you do. You know, when I think about the conversations you have about how you help patients spend each day to the best of their abilities and your abilities, the way that their ideal day would be spent. You know, when I think about that, I realize that, you know, often us healthy people, we think about, oh, if you only had a day, a year left, what would you do with that? But I've never obviously, I've never been in a position where that hypothetical, not a hypothetical. And I suspect that if I were actually presented with that question posited with a non hypothetical situation, you literally have a few months, what would you do? I think it would be actually pretty difficult for me to articulate that, because it's just such a, such a gargantuan thing to wrap your mind around. And I think that having having a team to help you think through some of your values and talk through it and design each day, I think that's that's so, so valuable and helpful and meaningful and profound. And to me, yeah, at one point realizing that, but also, on the other hand, realizing that so many people don't have that opportunity. And it's pretty painful for me to think about hearing how you describe the care you provide for the children and their families. I don't think any person, any parent, any child who has accepted that they have a life limiting illness would think this is a bad idea. I think everyone who hears what you can provide would say, yes, sign us up for that. It just seems like an intuitively meaningful thing to have the kind of support that you provide. What are some of the biggest challenges that that you face? What are some of the limiting factors that prevents this from expanding?
Shekinah Eliassen: [00:38:56] Mm. I would say first it's just a lack of education around that this these services exist and that they're a good thing when they're needed. Secondly, a lack of awareness. In our case, for George Mark, for sure that we are in the Bay area and not many medical partners know about us. Yes, the big medical centers do, but there is a lot of opportunities to grow, just the visibility that there's a beautiful place here for families to come and visit if it's a right fit for them. And I would also say the conversation within the medical community that palliative care is such a gem and such an important part of the services that for and for, you know, adult communities and young adult communities and children. And in our case, that palliative care is an important part of the medical system that we need to be talking about more so that the medical community can refer when the time is right to that team and elevate that team within the medical community. I just think part of it is that clinicians and the medical community doesn't want to face the hard conversations that come with that. Not all treatments work as much as we try. And not all surgeries work, and we need to just continue to help have the conversations that this opportunity exists for, for families. And I would also say the fourth probably biggest challenge is just around funding, right? I would love for a place like Georgia mark to be affiliated with every single pediatric hospital, right? That's a vision that where children can go to a place like Georgia mark, if it's right for their families, but having a continuum of care and partnerships that support that is something that we need to still unlock.
Shekinah Eliassen: [00:40:44] And I would also add, there's a lot of momentum. There's a lot of momentum around palliative care within pediatrics, in the Bay area and beyond. There are a few other homes like Georgia mark across the US that are independently funded and partnering with local hospitals. There's a movement to form more respite homes in America. There's a group called the National Coalition of Pediatric Palliative Care Homes. That's around building more respite homes for children, because this type of respite care is critical for families who need the break to to let their children go to a place like this so the families can have a break from the round the clock nursing care, and have time with their other siblings and their partners to have a thriving household. So there's a lot of momentum. I would say I would love to see pediatric palliative care in every actually palliative care, in every med student's program, at every med school, including social workers and other clinicians. There's a lot of opportunity to continue to grow, and we're on our way.
Tyler Johnson: [00:41:44] One of the things that I think we discuss on the podcast, more than it is discussed in most parts of medicine, is the spiritual aspect of medical care. And you mentioned that you have a chaplain on staff at the home. And, you know, I think that Spirituality is one of those funny things. I think that there is a lamentable state of affairs in society, where sometimes it feels like everything has been politicized, and it feels like religion and spirituality have even been largely politicized in the last 10 to 20 years. So that what I have noticed is that there's this almost a sort of political coding to different kinds of spirituality, such that people tend to affiliate or identify more with religion, or less with religion as a part of a sort of a package deal of how they think of themselves politically or intellectually or socially or whatever. And yet what I have also seen is true is that in many senses, I feel like being forced to grapple with one's own mortality is a great leveler in that sense, right? We suddenly don't care very much about our political affiliation or whatever and those kinds of spiritual concerns often bubble up to the surface, even if maybe they haven't been very prominent in our lives up until that point. And so I'm wondering if you can just talk a little bit about the role that spirituality and or religion and religious practices and rituals and all of those sort of things that that go together with that play in the life of the people who are housed there.
Shekinah Eliassen: [00:43:32] Such a good question. So again, so much of our philosophy is meeting the families and the children in their journey where they are. And so we have an incredible chaplain and social work team, and that is part of the conversations they have with families, is if it is toward the end of the life, you know, asking the families what their practices are, how they would like to incorporate those practices into this journey that they're on with their child and making space for that, whatever that looks like. We have a sanctuary here on our premises, on our five acres. It's a beautiful space and it's used for all kinds of things, including ceremonies of life. So we offer that to families after the child has passed to come and have a celebration of life, which we did for our son here. And it was packed and it was a beautiful, beautiful day. And we've also had a family respite. Family had a wedding here. They didn't have a venue for a wedding and we've used it for that. So we also use it for staff meetings and yoga and other things. But we have a space is the point for families to bring their theirself and have a conversation with someone who is a non-denominational chaplain who can, you know, really talk through families, through the journeys. We have literature, we have a variety of things to support families. We have rituals here also that are really powerful to help families start to prepare for the death.
Shekinah Eliassen: [00:45:00] We have legacy making practices again. Kyle, our child life therapist, will meet with the family and say, we all have these great opportunities for you to make some legacy memories with your child. We've done handprints and footprints in. We have a 3D printer. We do a lot of art. We have an art therapy program in the building where we have an art program and an art specialist come in and work with the siblings and the patient's hand prints, art, print. We have a picture of Lars's hands and our hands, and a tree that had made up the form of a tree, like the branches of our arms and our feet, which is on our wall. So we also have this beautiful ritual where we offer families after the child has died, to go and find two stones, one stone that they will keep in their home, and one stone that they can have the opportunity to place at our memorial fountain. And on the stone, you know, they we engrave the child's name on the front and on the back the year that the child died. And the family can take that home and put it wherever they want to at their home. And then we we have a one of our fountains. Here is a memorial fountain. And we can lay the stones there with the other children who have passed. And so there's this kind of space that families can come back to, to memorialize their child and to see all the other children and the names of the children who have come here.
Shekinah Eliassen: [00:46:19] So those are a couple rituals. Every December is International Child Remembrance Day. Did you know that there was a day internationally that honors the lives of children who have come and gone? Um, well, we honor that day, too. And every December we have a candlelight vigil. It's the first Sunday of the month of December. We have a holiday candlelight vigil. We invite all the families who have had a child pass here come, and the siblings and the grandparents. And we do beautiful walk with candles throughout the campus. And then we say we read the names of every single child that has died here, and it's over 350 names that we read. And everyone stands around and we read the names. And that is a ritual that we do to invite families back. And it's just it's rare that family have spaces to go to do that. So I bring my kids. I now have my kids came after Lars. I have two kids who are nine and 11, and we come back and they go find Lars Stone and, you know, they see the other names of the other children and they feel, you know, part of a community, which they are. So those are some of the ways that we create space and rituals for families.
Tyler Johnson: [00:47:26] There must be a surreal quality to having, you know, you're a business person by trade, not primarily a medical person, or at least weren't at the beginning. And here you have this, you know, terrible in many ways. Not that there weren't beautiful aspects of it eventually, but nonetheless in its, you know, sort of prima facie presentation, this kind of, you know, nightmare scenario that here comes your baby and has this terrible problem and then this very limited prognosis and all the rest of it. I have to imagine that, along with all of the many other emotions that flood through you at that time, there must have just been this sense of sort of deer in a headlight, in the headlights, like, you know, never could have imagined, never would have suspected, could not possibly have prepared. Right?
Shekinah Eliassen: [00:48:16] Absolutely.
Tyler Johnson: [00:48:17] And so then that happens. And and he has his beautiful but very brief life, which you savor and then later celebrate. And then you metabolize the deep difficulty of that pain and suffering into eventually becoming the CEO of this this organization that works to provide comfort to the very types of families that are passing through the sort of suffering that you encountered in such an unexpected and terrible way. And so I guess what I am wondering now is this if you were given, you know, if some heavenly messenger came down to earth and gave you 15 minutes to go back and talk to yourself from however many years ago, it was just as Lars is getting ready to be born, and you had the chance to go back and tell your former self what you wish you would then have known to sort of instruct yourself in preparation for that experience. And I imagine that in effect, if not, in fact, you have this opportunity as you try to craft the way that things work at the house. Right? And as you try to sort of prepare both people and the house itself for these experiences, what would you tell yourself if you could go back in time in that way?
Shekinah Eliassen: [00:49:49] Hmm. That's a good one. I would, I would start with, um. Take it a day at a time when you get a life. Devastating prognosis, which we did. Um, you know, where googling things or researching things. We're trying to figure out what is polymicrogyria. What does it mean? Life expectancies. We took the MRI to multiple doctors outside of UCSF to get another perspective on his prognosis. You know, we were we really did the due diligence. And then at some point, you just you have to in our case, he was terminal and we had to let go. And so at that point it was slow down. Right. And when you're in the middle of a dying situation with your first child, in our case, we did. We felt that we had that guidance to while we were here was just take it in like you want to. You have to update people and post things and share what's going on. And people are asking how he's going. And we have family all across the globe. So we tried to balance, you know, being really present, which is really what life is about being here and now, because you don't know what's going to happen tomorrow. And I think that is part of the the biggest legacy Lars has left with us is we have two more kids. We could get hit by a car tomorrow.
Shekinah Eliassen: [00:51:14] You know, you just don't know how life is going to fall out. But, you know, there'll be more hard things. And so really, we've lived this life of fullness and saying yes to things and embracing, telling people you love them all the all the memories that, you know, dying people say on their deathbed is, I wish I worked less and, you know, spent more time with my loved ones and had conversations like this because that's really what matters. So I think, yes, by embracing death, you you learn to live. And I think that's really what, what is one of the biggest messages is, you know, learn to live fully because life is life is short. I would also say that to myself then, is there's just something that I've learned since then called post-traumatic growth, which is this cycle of when you go through this really hard thing and you go through the fire of a trauma, a loss, some devastating encounter, and when you come through it, there's this incredible evolution that can happen. If you can take that hard thing and turn it into purpose. And that is where so much of my journey is now at. Leading this organization is like our sun. It's more clear to me than it ever was why he came into the world, right? He came here so he could experience the love that we shared with him and continue to carry his legacy on.
Shekinah Eliassen: [00:52:35] And that is really what growth is about, is if you can turn a trauma into purpose and you can evolve and grow. And so it's my honor now to be able to carry on his legacy in a way that I can help other families go through really hard things and see that there's a way to grow through it and to help others, and there's a lot of power in that. So that's another message. I would say. Sometimes you don't know why hard things happen and they feel the, you know, incredibly raw and bitter and maybe unsurmountable, but if you can get through them with a support network, then you can give a lot back to the world. And so I also feel to mention that George and Mark, the George Mark House is named after the brothers of the founder, Cathie Holt. George and Mark were her brothers and they both died young, so she named George Mark after her two brothers in their honor. And now I get to talk about Lars and his honor. So it is a very full circle. And sometimes really hard things can be full circle. And that's probably the last message I'll leave is that if we can make it through the hard things, good can come through.
Tyler Johnson: [00:53:42] Yeah. You know, I just reflecting back on that, I, um, There are moments where I'm talking with patients who are dying, or the loved ones of patients who are dying. I try to be very careful not to talk about silver linings on the clouds or whatever, because that seems trite and kind of dismissive in a way that I think can be hurtful. That said, though, I think it is true what you said, that there is a particular insight into what life means and why it means so much that is hard, if not impossible, to really get your arms around unless you have been faced with the prospect of life not continuing forever. And it does this kind of weird thing where it's like whatever is happening, it sort of bathes everyday life in this sort of amber colored glow. It just looks different. Right. And there are moments. I mean, I, in a weird way, feel like I have this sort of a double life because as a medical oncologist, I just by I can't not think about these things because of what happens to my patients. And, and there are times when I think, I think we live in a very goal centered, future centered culture where we're always thinking like, oh, well, when I, you know, graduate or when I have my three kids, or when I get married or when I am in a bigger house, or when I have this much money, or when my, you know, this hard thing that I'm in the middle of is over, or when I, when I, when I, when I then something right.
Tyler Johnson: [00:55:25] Whatever life will change and I'll be happy and whatever whatever. But the thing that I think the kind of experience that you're talking about teaches us in a way that nothing else quite can. Is that there is no when I, there's just now. Yes. Right. Life is the cookies you made yesterday afternoon and the mess that's on the floor that you haven't cleaned up yet. And the funny thing that your four year old said and the job that you didn't quite get and the other one that you did, and it's what you make of whatever everyday life is putting in front of you right now, that that's it. There is no when I write. Because even if you get to the when I you're going to discover that that when I is actually just as imperfect as what you have right now and, and there is something to be said for discovering a way to allow that amber colored light to touch everyday life that we are living, that some version of that seems to need to be in the secret sauce that allows people to really suck the marrow out of life.
Tyler Johnson: [00:56:34] That's part number one. And then part number two to your last point. It really is, I'm convinced, a special gift that some people have to be able to take the really, really terrible hard stuff and allow it to be metabolized in such a way that then the phoenix rises from the ashes, right? The the flower grows out of the devastation of the forest fire or, you know, whatever analogy you want to use. And so I guess all of that is to say that on behalf of those who will hear this podcast and on behalf of those who are touched by your current efforts and by any future efforts toward expansion, we give you our thanks for being the kind of person who's possessed of the gifts that allowed this phoenix to rise from these ashes. Of course, we wish the ashes had never been there in the first place, but nonetheless, we're we're grateful to you for allowing this kind of grace to imbue what has arisen from that tragedy. And I am certain that people listening will draw a great amount from all that you've said. And so with that Shekinah, we thank you so much for being with us and we wish you all the best.
Shekinah Eliassen: [00:57:50] Thank you. My pleasure. Loved having a conversation.
Henry Bair: [00:57:56] Thank you for joining our conversation on this week's episode of The Doctor's Art. You can find program notes and transcripts of all episodes at the Doctor's Art.com. If you enjoyed the episode, please subscribe, rate, and review our show available for free on Spotify, Apple Podcasts, or wherever you get your podcasts.
Tyler Johnson: [00:58:15] We also encourage you to share the podcast with any friends or colleagues who you think might enjoy the program. And if you know of a doctor, patient, or anyone working in healthcare who would love to explore meaning in medicine with us on the show, feel free to leave a suggestion in the comments.
Henry Bair: [00:58:28] I'm Henry Bair
Tyler Johnson: [00:58:30] and I'm Tyler Johnson. We hope you can join us next time. Until then, be well.