Soins palliatifs

Webinaires | 20 janvier 2022

Le 20 janvier, le Dr BJ Miller a rencontré l'équipe de Mourir dans la Dignité Canada pour discuter des soins palliatifs.

Conférencier :

LeDr BJ Miller est un médecin et éducateur de longue date en médecine palliative et en soins palliatifs. Il reçoit actuellement des patients et des familles par le biais de la télésanté, par l'intermédiaire de Mettle Health, une société qu'il a cofondée dans le but de fournir des consultations holistiques personnalisées à tout patient ou soignant ayant besoin d'aide pour faire face aux problèmes pratiques, émotionnels et existentiels liés à une maladie grave ou à un handicap.

BJ a travaillé dans tous les milieux de soins : hôpital, clinique, établissement résidentiel et domicile. S'inspirant de ses propres expériences en tant que patient, BJ défend le rôle de nos sens, de notre communauté et de notre présence dans la conception d'une meilleure fin. Il s'intéresse à la collaboration entre les disciplines afin d'opérer un changement de culture à grande échelle, de cultiver un modèle civique pour le vieillissement et la mort et de faire passer le message que la souffrance, la maladie et la mort sont des aspects fondamentaux et intrinsèques de la vie. Sa carrière a été consacrée à faire évoluer les soins de santé vers une approche centrée sur l'humain, tant sur le plan politique que sur le plan personnel.

BJ a donné plus de 100 conférences au niveau national, et international, sur les thèmes de la mort, du décès, des soins palliatifs et de l'intersection des soins de santé avec le design. Son TED Talk de 2015, intitulé "Not Whether But How" (alias "What Matters Most at the End of Life"), a été visionné plus de 11 millions de fois et son travail a également fait l'objet de multiples interviews et podcasts, notamment chez Oprah Winfrey, PBS, le New York Times, le California Sunday Magazine, GOOP, Krista Tippett, Tim Ferriss et la TED Radio Hour. Son livre, "A Beginner's Guide to the End", a été coécrit avec Shoshana Berger et publié en 2019.

I’m thrilled to welcome you all today to the 12th session of Dying with Dignity, Canada’s online conference, Reflections on Death and Dying. The first month of our webinar was such a success and you can watch the recordings to some of the sessions posted on our website. The link will be put in the chat so you can click on that and watch them at a later to time that’s convenient for you. We’re going to be continuing our conference throughout January and we’ll be presenting a range of topics related to death and dying. If you haven’t done so already, all sessions and their registration links can be found on our website and we’re putting the link for the next session, which is Assisted Dying in the United States with Thaddeus Pope in the chat now.

Before I welcome today’s amazing presenter, I’d like to go over a few housekeeping items. Everyone on the call today is muted. However, there will be opportunities to submit questions. To do that, type your questions into the question bar on the Zoom side panel and we will read it out for you at the end. Please try to keep your questions as clear and concise as possible. We are going to try and get to as many as we can, however we may not get to everyone so if your question is outstanding following the webinar or if your question is quite personal in nature, please contact us at support@dyingwithdignity.ca and then we’ll follow up with you individually. We’re also going to be sending out a post webinar survey that will pop up on your screen after the webinar and it will give you the opportunity to share your feedback. We are also recording today’s session, so you will be able to watch it again later, share it with friends so no need for you to worry about taking any notes.

Now to introduce today’s speaker. Dr. BJ Miller is a longtime hospice and palliative medicine physician and educator. He currently sees patients and families via telehealth through Mettle Health, a company he co-founded, with the aim to provide personalized holistic consultations for any patient or caregiver who needs help navigating the practical, emotional and existential issues that come with serious illness and disability. BJ has worked in all settings of care, hospital, clinic, residential facility and home. Led by his own experiences as a patient, BJ advocates for the roles of our senses, community and presence in designing a better ending. His interests are in working across disciplines to affect broad based culture change, cultivating a civic model for aging and dying and furthering the message that suffering, illness and dying are a fundamental and intrinsic aspect of life. His career has been dedicated to moving healthcare towards a human centered approach on a policy as well as a personal level.

BJ has given over a 100 talks nationally and internationally on the topics of death, dying, palliative care and the intersection of healthcare with design. His 2015 TED Talk, Not Whether but How, aka what matters most at the end of life, has been viewed over 11 million times and his work has also been the subject of multiple interview and podcasts, including Oprah Winfrey, PBS, the New York Times, the California Sunday Magazine, GOOP, Krista Tippett, Tim Ferriss and the TED Radio Hour. His book, A Beginner’s Guide to the End was co-authored by Shoshana Berger and published in 2019. What in a incredible resume, thank you so much for being here today, Dr. Miller and I will turn it over to you to get us going with today’s presentation. Thank you.

Thank you, Nicole. Sorry for the long bio, it’s kind of fun for me to hear and think back on the years of this practice. But anyway guys, thanks for having me. Hello everybody. I’m really glad to be with you. I’m in sunny California right now. It may be nice to hear or annoying to hear but here we are. My favorite part of talks is really the Q and A and the discussion aspects, the dialogue.

I’m going to, hopefully not, I’m going to go through some slides just to level set and bring us into a similar page. But hopefully there’ll be plenty of questions. I’d like to get that part out of the way to get more to the conversation. Please don’t hold back. And it’s an invitation. I think a lot of us who do this kind of work, the personal and the professional lines get a little blurry or say porous, which is both a wonderful thing and a hazardous thing of the occupation. But all that is to say, I welcome any questions or comments. Pretty much any, whether it’s about my own route or my own experiences or about the profession, et cetera. Don’t overthink it.

Let me pull up my slides guys, real quick and we’ll go through them. I will say, here we go. Slides, you’ll see my slides are like this, they’re imagery or phrases or a word. It’s just prompts really. My talk today, I called it letting as opposed maybe to fighting but also to kind of right size ourselves, I suppose, in this kind of work. We’re sitting in front of or dealing with or in the flow of enormous natural forces, huge, big, big forces like living and dying. And the more I’m around this subject, the more I spend time with other folks going through the end of life or think about my own, the more convinced I am and maybe this is what happens when you get better at your job or more experience at your job is you start realizing that in some ways you do less, not more. In some ways I’m more and more in tune with what’s underneath all this irrespective of whatever I do.

It’s a nice realization, humbling too, I suppose in a way, but it’s a nice one. Depressurizes me or any one of us to have all the answers to everything, to make things happen versus letting things happen. Of course, that’s a oversimplification. There’s a song and response between our interventions, our actions and what’s going on outside of ourselves. There’s a dance between ourselves and the rest of the world. There’s a dance between ourselves and mother nature. It’s not as simple, letting is not an passive thing. It’s not a matter of going limp here. It’s like relaxation. It’s active.

Anyway, enough for that one word. We’ll move on. But This is a tryptic by Francis Bacon, a painter whom I love. And it may seem like gruesome imagery, perhaps. I think find it kind of an interplay between gruesome and beauty. And more I spend, the more time I think about beauty, the closer related it is to terror too. I think terror, being terrified and being overwhelmed by something gorgeous is not a dissimilar experience. In any way, I love this painting because it kind of mixes the terror and the beauty and it kind of reminds me of what we do in healthcare and what we do to a person with our subspecialization and our focus, which is many beautiful things have come from that kind of focus and we’ve gotten very good at taking a person apart into their bits.

We’re not so good about putting people back together again but illness will do this too. It’s a discombobulating experience. And yet even as our bodies fall apart or even if that’s the right word, even as our bodies die in some way, that’s a shrinking, a shriveling, a decline. But I think a lot of us are also aware that even as the body may be getting smaller and one’s access to the world may be narrowing to just their bedroom, just their bed, just their inner life, there is all this room for expansion and growth in the spiritual and the social planes, in the intrapersonal planes, interpersonal. All sorts of, in some ways in every plane but the body yet the body’s a place where so much of our attention is especially in the medical world, the physiology and anatomy that kind of rules our roost.

I better pick up the pace or we’re going to be here all night. Sorry. This is just the title page. Palliative care, the sort of meta theme or the theme of the talk today. You all probably know very well what palliative care is but I start most talks with this slide, just because even those of us in the field still struggle to describe what the heck we do and there’s so much confusion about it, versus hospice, et cetera. I thought I’d just start us here, just naming the field, defining the field. And this is a definition that comes from the The Centers for Medicare and Medicaid Services. The government’s take on what palliative care is. The World Health Organization, others have different ones, but I’ll just shut up and let everyone read it.

Boy, we could spend all day on this one. I will try to, just a couple novel things to point out. One is this idea that our fulcrum, the thing that we’re treating per se is suffering. That is a unique statement within the rest of healthcare because suffering, suffering is a first of all, it’s something that everyone does. It may be the very first thing we do when we come out of the womb. A healthy child, wails, cries. Suffering is elemental. Religions formed around it, making meaning from it and also trying to mitigate it. It’s a tormentous process and one packed with growth opportunities too. It’s a mighty, mighty thing, suffering.

But for our purposes here, let’s just say a couple points. One is again, it’s universal. Everyone suffers and yet it’s wholly individual. I don’t get to test as a physician, I don’t have a test for suffering. I don’t have a probe or a blood test. And so one of the things it does is it sort of equalizes the playing field. Each of us gets to say when we suffer. It’s not for anybody else to judge or to tell us or to weigh. It’s wholly subjective. I define suffering as the gap between the world I wish for or the reality I wish for and the reality I have. That kind of helps me sort of normalize it as a very common thing. It’s almost a figment of, this is what we get for having an imagination. Because as human beings, we could probably always imagine a world better than one we have or reality that we prefer or whatever else. There’s something in us that can set up this space between us and the world around us. Us and reality.

And we’d see this play out in so many different ways. The way we kind of go to war with reality, whether it’s the going to war with illness. What is more natural than getting sick? What is more natural than dying? I’d say pretty much nothing. Then yet we as humans have decided to try to root those things out, name them a problem and go to war with them. Forgetting that we’re therefore at war with reality or at war with ourselves. Another way that suffering, we just can’t seem to get it to leave the room. And so maybe we should stop trying so hard. I used to think that my job was to help people. It was sort of the science of comfort. I don’t think that so much anymore. Comfort is powerful, useful power. Yes, I’m pro comfort. But as the endpoint to all of it by its own as the singular goal, I think we would do ourselves a disservice if we were chasing comfort all the time.

Of course, in the context of serious illness and end of life, that’s very different math. We presuppose suffering and comfort is the salve in this situation. But if we’re always pursuing comfort, keeping difficulties at bay, we will be keeping life at bay. Anyway, much to say about that and we’ll circle back to that theme a little bit later. But suffering versus the rest of healthcare may be focused on a disease. And so while palliative care embraces the subjective sense, the subjective experience of suffering, of illness, the rest of medicine is a counterpoint to the rest of medicine that is hellbent on objectifying it, rooting thing out. There’s a tension here.

Even though I love this exercise, if you take the word palliative care out of the first. For my money, I would love to see this be the definition of healthcare. Couldn’t you put in healthcare means patient and family centered, blah, blah, blah? It’s a beautiful challenge because even if we’re pursuing the medical conventions of objectivity and randomized controlled trials and expertise of a certain kind, I think we always have to realize that those are constructs. Those are conventions, those aren’t realities, natural realities per se. And even with all those tricks, I suppose we’d never want to operate on someone, save a life per se, as a means to the end of promoting their quality of life and mitigating their suffering. In other words, I think this definition really belongs over the whole of healthcare. And I think like you guys, like Dying with Dignity, like organizations here, like people in the field of hospice and palliative medicine, I think a lot of us are just trying to make the case that we’re trying to get sort of back to a deshamed affect or a deshamed orientation to ourselves in the world.

Why should we be ashamed of dying? Why should we be ashamed to think that there are things worse than dying in this life? Why should we be ashamed to welcome our own deaths? It’s a really important question. Anyway, I’ll get off this page here but let me just, I just want to point out again, palliative care, really focus on this subjective experience of illness. The subjective experience of suffering. It is promoting the quality of life, of one’s life and those are related. And these are very important distinctions from the rest of healthcare. And you can see how palliative care is the right discipline to be in the mix around conversations of death, even though death isn’t anywhere in the definition in some way.

And one more thing I want to say, vis à vis specifically this idea of hastening death. I think a lot of us, especially in the legal frameworks, we make space for this idea of hastening one’s death, ie. welcoming death, which is so anathema to the rest of how healthcare and a lot of society is wired. But we sanctify that. We say, “That’s okay, as long as we’re treating some intractable suffering, as long as a means or sort of a last resort. In other words, as long as the patient is miserable enough to warrant this profound intervention.” I get how that’s an important legal framework but why do we make each other be miserable to welcome our end? Why is that the currency? I don’t have answers here but I think it’s a worthy question. Well, actually I’ll save that story. I’m going to come back to that on a later slide. Hang in there. I’ll leave you cliffhanger.

Don’t need to spend much time here, guys, but except to say sort of imply, but suffering is an enormous multi-modal. Because it’s completely entwined with life, there’s no one person or one discipline who has a lock on this subject, no way. And in healthcare, we’re very proud that the palliative care team is doctor, nurse, social worker, chaplain, at least. Music, thanatologist, art therapist, volunteers, et cetera, et cetera, PT/OT. There’s a lot of other disciplines but at the base, medicine, nursing, social worker, chaplain. And then within healthcare, that’s a profound interdisciplinary team. That’s enormous interdisciplinary team but truly if our subject matter is mitigating suffering and promoting quality of life. I mean, geez Louise, where are the arts? Where’s architecture? Where is design? Where are the social sciences? So many of the things of the human enterprise come back to making sense of life, making life less tormentous. Anyway this, it’s a big round table and it should be bigger still.

I will just point out two more things here. One is to note this idea of intellectual suffering. I was fascinated to see that in the palliative care definition. What the heck is intellectual suffering? I wonder if they meant when they wrote that definition, neurological illnesses, dementias, and other illnesses that affect our thinking, our intellect. Maybe, certainly at least that. But I also think and I kind of referenced this a moment ago is I also think it’s relevant to us as where our human inventions, the kind construct, like the medical model or any model that we come up with, we suffer when our models for reality or the things that help us understand or digest reality don’t actually really sync up with that reality. I wonder if that makes sense?

In other words, I think a lot of us who suffering from flaws in our constructs, the made up notions of living as a human being versus the natural reality of being a human being. I think it actually is pretty darn common. And so it goes with suffering in healthcare. And so it goes with suffering around on both sides and perhaps the argument of making aid in dying legal. I think a lot of the chafe is oftentimes with the process or the model for the law, not what’s underpinning the law. My life, my death, if death is coming anyway soon. I think to a lot of us it makes visceral good sense but we get wrapped around the acts when we try to legislate it or put it into words or offer a universal framework for a very exquisitely individualistic process.

One more thing to say on this slide about suffering is this last piece, logistical suffering. I put that in there. That’s my little addition to the wheel of suffering. Just to note, we don’t need to harp on it here, but how healthcare is very often this thing that a lot of us spend years training to participate in, go into great debt to participate in to serve others, et cetera. And yet, as a system, our healthcare system, at least in the US leaves a lot to be desired and often enough, well often enough, too often, the healthcare system ends up being the source of the suffering, which is ironic at best and demoralizing and negligent at worst. Just to call that out because sometimes the sorts of suffering is us humans and our models or our healthcare notions of health, et cetera.

All right, well, this is just a fun painting, guy. Fun, maybe the wrong word. This is a bloody painting by William Prosper. I think it’s 2001 called, I think it’s called Ether Day. This is referencing a moment in Massachusetts General Hospital in 1846. I think it was right at the beginning of the technology revolution, the industrial revolution, full swing. This is where medicine and science are getting in bed together. Medicine had been much more mystical process to date but the scientific method started to take hold mid 19th century. And this is the notion that gives us the sort of our modern notions of science, again of objectivity, reproducibility, specialization, randomization. Amazing system. I by the way, am alive because of it. I was injured in my college years and would’ve been dead without my flawed American healthcare system. There’s a lot of beauty that comes from it.

This is a moment chief among them when ether was finally harnessed and given to a patient so that they could sleep through surgery. What a moment. Those of us who have had surgery, geez Louise. Thank you. This was a very powerful moment. The alternative used to be bite on a stick or some vodka. Big, big deal and you can also see what happens from here. Look at the patient here. The patient is essentially gone, asleep and with our science, we can, in some ways separate the person from their body. Get the pesky subjective, peculiar, idiosyncratic, emotional human out of the way, the person out of the way so that we can get to their body where the disease is hanging out. That’s been essentially our model and no wonder a specialty like palliative care had to come along in the late 20th century, a 150ish years after this moment as a corrective. Because like I said, the definition of palliative care, it probably should be all of healthcare but it’s not.

Again in ways we’ve just sort of just mapped out. In some ways, palliative care is here to reacquaint us with the subjective, with emotion, with the fullness of being a human being that won’t be found in our flow charts. To celebrate the things that are different among us, not just the similarities. I like to think of palliative care again as a corrective. If we have our way, if we remind this system and we can get the system to focus on human beings who carry the disease, if we focused our energy, it’s this very simple, constructive shift. If the focus of all this effort were on the person dealing with disease or illness or disability versus focusing on illness, disease or disability, it would change everything. Much more would flow. We wouldn’t be trying to separate the social from the medical, from the spiritual, it’d all be in the mix. But we got to ways to go guys. I’m sure I would imagine in Canada as well as in the US. For time being this little specialty of palliative care needs to keep on going and beating this drum, I think.

These next few slides are prompts that come from at least my own experience, not just mine, but many people who practice this kind of care. These are kind of lessons you learn. And they relate to our big subject care of mortality and the sort of subheading of how does one relate to their mortality, to the point where it’s a choice, it’s chosen, it’s welcome, it’s preferred. And not in a ghoulish way but in a thoughtful, full wholehearted way. Again, these prompts are meant to kind of get us in the ballpark of where these things start to make sense and where we see how the traditional healthcare system just wasn’t up to the trick and why we need a legislation like MAiD et cetera.

Here’s one distinction, curing versus healing. Curing’s amazing. When you have a problem and it can actually be fixed. Woo, that’s great. As palliative care doc, I’m all for curing, full steam ahead. The trick here is to realize that healthcare, medicine and society to some degree, when someone is beyond curing or fixing or doesn’t want to be cured or fixed, we’re not quite sure what to do with them. That’s problematic and healthcare system traditionally says, “I’m so sorry. There’s nothing more we can do.” And essentially, if you’re lucky, they’ll sort of say anything to you, otherwise it’s a sort of a quiet abandonment can happen. Even a gaslighting. You just stop being so relevant, feeling so relevant to your doctor’s office or to the hospital because their tricks aren’t really working on you. Again, I’m not here to bash medicine, just to understand how it is that we need to opt out of that wheel. I think if we move, so again, curing great but let’s not stop caring once we’re beyond the cure.

That’s the problem. Abandonment is the problem. I’ve never met a patient who was angry at me as a physician because I couldn’t cure them. They may be sad or whatever else but angry at me? No. I’ve met patients who are angry at me because I didn’t return their call because I just stopped paying attention to them because I abandoned them. And I get that now more and more. Like we said, if we move from a disease focus to a human focus, that would answer so much of the problems. If we move from a focus on curing to a focus on healing, that too would make a big, big difference. Healing, same route as wholeness, being whole, being intact. Healing is a much more mysterious process and it requires us the patient to be engaged. I kind of retract from the word healer myself.

I don’t know that healing seems maybe another, a person can bestow a kind of presence that can evince or catalyze healing but I don’t know about this idea that I have this special power and I’m going to come along and bestow you with my healing. It’s much more an engagement, much more of a relationship. It is kind of true of curing, the surgical fix, et cetera. My job as a patient is basically to sit still. My job if it’s healing, I as a patient have a much bigger job, I get to have a bigger role. It’s a relationship. It’s a dynamic. I as a dismembered, as an amputee, I can be whole. My sense of self can be whole. I can be healed even though my limbs aren’t growing back. So does with folks who are on their death bed, who are dying. Even and perhaps especially those who have chosen to die.

There’s healing is still possible. That just simply means they are whole. They are themselves. They are intact. Their persona is intact. Find your own words for this. It’s a little mysterious but the idea here is it’s bigger and healing is almost always, perhaps always possible whereas curing is rarely possible. Healing may be always possible. Curing is sort of a thing of expertise. Patient lies still, healing is a thing of engagement. A relationship, a back and forth. Patient has much more relevance to their own care and the pressure’s off the doctor to somehow work miracles. Again, it’s a dynamic.

Another big distinction, acute chronic. Modern medicine’s great at acute care. That’s the sexy stuff. That’s hospitals built for acute care. That’s where we are intervening on nature. Very different, transactional, quick, in out. There’s not an ongoing longitudinal relationship, generally speaking, unless you’re in and out of the hospital enough. Great. Acute care is amazing. I’m all for it. I don’t know that we need so much more development. The proportionality in our system of research dollars, infrastructure, et cetera, that goes towards acute or cure mentality stuff is 90 plus percent because chronic illness implies you’re not curable, well, in some ways the healthcare system has to offer you is pretty de minimis relative to the acute care.

For those of us trying to push healthcare to develop, it’s the chronic stuff. And what does chronic mean? Chronos time, over time. It’s therefore an experiential approach. My job working with people who are beyond curing, is to be with them, to move with them over their life, to develop this relationship, to help substantiate a feeling of belonging, a sense of self acceptance, these kinds of things. And these happen over time. Again, it’s a relationship and that’s where it gets very exciting. That’s the starting line that happens when you’re beyond cure and it’s not so bad. There’s a lot of beauty that happens in that chronic, that protracted, that care over time.

Here’s another, one we look at the time I’m gabbing here. In healthcare, people come there’s preventive care but most healthcare is something goes wrong, uh-oh, get your butt to the ER, to the hospital, to a doctor to make something horrible, make it less horrible. You got a problem maybe, solve it. But the order of business for the most part for my job and many people in healthcare is to take a hard thing and make it less hard. For our own self care as clinicians and for the sake of the community and the patients that we serve, I think we also need to make sure to stake a claim for how we can things more wonderful, not just less horrible even onto the death bed. And of course the two are related. It’s not like we have a fulcrum that you’re either feeling horrible over here, which is diametrically opposed to feeling wonderful over here.

It’s way more fascinating than that. I think those of us just thinking back on our lives, if you think about what you’ve learned from any of the hardship, from hard things that you would never have chosen but had to go through, those are very rich experiences and lend themselves to a meaningful life, a wonderful life. And even as foils, if you know suffering, well I tell you what, you’re very likely to know joy as a foil. It isn’t so simple as more wonderful, less horrible. It’s some relationship between the two. How we treat hard things can bring wonder into the mix and that can be itself therapeutic. I don’t think we should ever stop looking for wonder or awe or amazement. Find a way to be fascinated with our situations, whether we’re patients or clinicians is a great way to carry us forward even into death.

And I wanted to say earlier in the definition of palliative care, of quality of life versus treatment of suffering, it’s a little bit of going for more wonder or less horror. Vis à vis my own experience with people, I’m in California, we have an aid in dying law in the books since 2016, I believe. I’ve been involved with a handful of cases with people who made this decision. And the thing that’s interesting to me is, again, all the laws, all the pathways I had to navigate as a clinician had me essentially proving that this person was miserable beyond a reasonable doubt and that everything else had been tried. That’s sort of what I needed to document and that was accurate. And if the medical record were allowed for a thicker essay, I would have to say that a lot of the people I was working with, there was a little bit of a wink around the suffering.

Yes, they were suffering but they weren’t choosing to hasten their own death out of a flight from suffering. They weren’t running from life or running from pain. It wasn’t this last ditch resort thing, this least horrible option among horrible options. In fact, if I’m honest and when they were honest with me, when we talk about it, there was a potency of power that came from choosing this path. It was a meaningful choice, not a flight from a horrible option. It seems like a really important distinction. I don’t know how you would put that in the law. I don’t know how you would legislate that or put it in there but that was what’s happening in these handful of cases that I was involved with. And I think probably very often that people are making what is a meaningful choice for themselves.

It may not feel wonderful but it’s a meaningful one. And the families that I’ve worked with, people who chose this was interesting. Their grief seemed to be attenuated because they think they all felt like they participated in a meaningful event. Again, death was coming soon anyway, so they’d gotten over this idea that death was the enemy and maybe death was welcome. In some ways, for some of us, it’s sort of like quitting before getting fired or something like that. Some people I’ve worked with it’s a little bit of a middle finger to death. Sometimes it’s just a full embrace. Let’s move on with this. But one way or another, I think a lot of what was happening here, if we’re honest, is something much more meaningful than a flight from suffering.

This is just a slide, make space for nonverbal communication. We need this aid and dying process, it requires communication, verbal, written, et cetera. It’s really important. Boy, do we need our words, but man here again, honestly, we work from so much fuller a palette than just our vocabularies. Body language, vibes, eye contact, all sorts of stuff. And I would just love to bring that into the mix around this aid in dying conversation. Again, there’s stuff going on underneath our words. And I wish, I just wish we had some ways to get more in touch with it. Including things like intuition. As a physician, did my intuition, did my gut say when this person was requesting to hasten their death, no matter what the data suggested or their medical record suggested, what did my gut say? Did it feel right? Or was my gut saying, “Hold on here, there’s something we’re not addressing?”

My gut’s been extremely useful and it’s not a very wordy place. One’s gut I think is an extremely useful thing, intuition. It kind of puts us also in mind of, well, this woman here, Florence Nightingale. Florence Nightingale made a huge impact in the world. She wrote this book 1860s, 1870s. She’s also in scientific explosion, technology revolution, industrial revolution. She’s practicing her craft at the same time. But if you look at this book, she talks about things like flowers, the power of fresh cut flowers or natural light. These things, the aesthetic domain.

And the segue is around this intuition, this gut sense, this felt sense. It isn’t really an intellectual thing. It’s something different, something visceral, not such a wordy place and yet it’s a place of knowing. And I think this word, I think we should all use this word more freely. I hope we’ll be hearing more and more of it. I think the aesthetic domain is what’s been left out in some ways as a very serious piece of the human enterprise. Sure, there’s emotion. There’s thought. These are very powerful, important ways that humans relate to themselves and to each other. But I think the third leg of that stool is probably the aesthetic sense. The aesthetic plane is simply the world of senses, of perception, feeling, a feeling our sixth senses. Our five senses plus a sixth sense, which we kind of call intuition. It’s interesting that painting that I referenced earlier, what was happening there? What was the big pivot for healthcare there was but the invention of anesthesia, literally the antonym of aesthetics.

You can see how, look at a modern hospital. They’re not pretty places. They’re not places that tend to your senses. They tend to assault our senses. My sense is if we brought the aesthetic plane, this other way of experiencing life, this other way of relating to one another, this vibe place without being too California woo woo here. There’s a philosophical, rich, philosophical tradition around aesthetics. My sense is it’s what’s missing for us in this puzzle. I just want to call it out as important piece of palliative care as far as I can tell. And medicine is, I think it’s really an important piece of the puzzle again, that is lacking that I think could use some fresh attention. Yes, that’s an invitation to all of us to think on it and also don’t fall the trap of aesthetics being this pretty aesthetic dentistry, white, straight teeth. It has nothing to do with prettiness. It’s just, there’s no value, good, bad. There’s no adjective. It’s just a felt experience.

One more thing to say about aesthetics that I love is if you, John Dewey, a psychologist and philosopher in 20th century, he wrote a great book called Art as Experience and he defines the aesthetic as anything that enlivens or quickens or builds on our sort of anything our sense of aliveness in real time. An aesthetic experience, it’s something that’s happening in real time. It doesn’t require the intellect. For those of us who are going to be living with dementia and can’t imagine life without our intellect, well, there is a life beyond your intellect, it’s called the aesthetic domain. It’s just a feeling, a sense.

It’s another way of putting a bigger value on our experience or reify but also on the human experience of just being. Isn’t it amazing to just be, just to feel something? And here again, I want to invite that even into the end of life space. Why would we choke our senses off at the very end as we’re made to propel people into the afterlife? Well, I suppose this could be an aesthetic explosion really at the end of life. Anyway, much more to talk about on aesthetic plane. I just want to at least introduce a concept the here or bring it up.

As I was saying, this aesthetic thing, one of the power is it doesn’t require a narrative. There’s no story. There’s not an intellect so it can be a part of meaning making but meaning making tends to require a narrative. And I think a lot of us aware more and more that our stories are very powerful ways of loving life, experiencing life, communicating life, being interested in it. But our stories also can hem us in. We can become prisoner, stuck with our story. Very often when I’m working with people towards the end of life, very often it’s a process of rewriting their story.

Meaning, I’m all for it but I also think we need to make more space for meaninglessness. Oftentimes I don’t know what the meaning of this or that is. It’s out of reach to me. Does that mean I’m less engaged? No. No, I’ve come to love when I can’t find meaning, then I’m just curious, then I’m fascinated. There’s something really powerful about meaninglessness as well as meaning. And I think we should all, it’s a note for us because I think a lot of people who’ve never doubted the source of meaning or doubted their faith until the very end of life, their world can crumple, they’re unpracticed at doubt over meaninglessness and their world can up quickly and they can often then kind of go right to, boy, I got to get off this planet. I can’t handle this meaninglessness stuff.

Again, I’m neutral on aid in dying. I don’t want my patients necessarily to make this choice per se. I want them to have a full and rich life. And sometimes that includes hastening one’s death. But in advance of if I can help them live with a meaninglessness, have some relationship to doubt, that might forestall this idea of hastening their death. Maybe.

This slide guys is simply a nod towards speaking of meaninglessness, a nod towards mystery. Another thing we have to all have to bring into, especially in medical science, we crowd out mystery. We kind of call it ignorance. No, no, no. The smartest person of course knows, there’s plenty that we don’t know. I just want to make a nod to mystery. And if you want to be working with people towards the end of life, you better have some relationship to mystery or you as a clinician, you’re going to freak out.

Let me pick up the pace here, guys. These are slides just to say another thing that I think of our job here and together as humans and one of our big human muscles, that seems so powerful to me is this idea of perspective making. We can’t change so much of what we’re seeing in life but we can often change how we see it. That is a supreme power. For an example, here we have an image of Earth. One thing. On it, we’re all one. We have proof. There’s an image. You can see it. Okay, we’re all one.

Or you can zoom out and you can see us as one of many. Also true. Verifiable. Or you can zoom and this is little virus particles. You can zoom in on a fraction of any one of our bodies and see it teaming with life. I myself am a universe with trillions and trillions of little organisms hosting. Hosting trillions of little organisms. It’s insane. All three of those states ares are true, none more true than the other. What’s different is we’re exercising the human capacity to change how we see things. We change the context. We change the focus. Those photographers, zoom in with your lens or zoom out. That’s this human capacity. And I think we should all get much more facile with it, including towards end of life. How we frame death, how we think about it ourselves before it, that’s very much a framing exercise. And we can bring a lot of comfort, meaning, peace with our capacity to zoom in and zoom out.

I want to get over to questions. Let me just simply just roll through these quickly. Discernment, humans are great. We need contrast. We see contrast but I think so, yes, to discernment, noting, to seeing, bearing witness, most powerful things we do in palliative care is just witness people. It’s very different from judging people. Sometimes we can’t help ourselves. We have to put things in this vertical alignment, good or bad. I hear myself often asking people I meet with lung cancer, did they smoke? And there’s a piece of me that asks because it’s in judgment. I want to know because then ostensibly, they deserve of their cancer or something like that. It’s not great to track that urge. Yes, let’s develop our capacity to discern, to note, to see. Let’s attenuate our penchant to judge.

Power of possibility. We need to be much more honest. I live in Bay area nothing’s impossible. You can do anything but bullshit, excuse me, not in this life. Maybe over the course of life in general, this planet, maybe anything’s possible but not in this life. And I think we hurt each other with this presupposition that you can do anything, especially with someone who’s dealing with the end of life. No, you can’t do anything. There’s relief and innocence in just being honest to things that are actually impossible.

We are the dying. Let’s not separate ourselves from each other on this one. We’re all going.

Myth of independence, let’s also do away with this Western autonomy, rugged individual thing doesn’t exist. I learned that by becoming disabled myself and I was so relieved to realize that the whole dang independence thing was a myth. We could be relatively dependent or relatively independent but we’re all on the same spectrum of dependency going throughout our lives, period. End of story. There is no such thing as being a burden per se because we’re all burdens per se.

Grief is good. I can just leave it that in the interest of time.

And then I’ll just end here guys. One more image for us. This is a painting called Et in Arcadia ego, which is a Nicholas Poissin painting, 17th century. He’s very Christian, theological painter. Et in Arcadia ego, I too Exist in Paradise. That’s what that means, that’s Latin. And we see these three guys walking, hiking around paradise and they come across a sarcophagus in paradise and you can’t see it but they’re pointing to the inscription. It says, “Et in Arcadia ego.” And looks like they’re conferring with a goddess or some divine character. What is death doing here? Thought this was paradise, essentially. Not understanding, not getting this. Et in Arcadia ego, I too Exist in Paradise. It’s an active tense, not I was here. This is not a memorial.

One way to read this painting is that death is part of paradise. Death is part of life, not this thief that steals life from us. And that just begs a very different orientation. If we see it as part of our life, nothing to be ashamed of, is completely natural, as one of the ways we get to experience paradise is we know that it can end on some level.

I’ll just stop there. And hopefully that invites a different kind of relationship to death into the mix, which is, I think somewhat so much of us are all about. Let me pop out of the slides.

Perfect. Thank you so much for such a powerful and fascinating presentation. We have lots of questions that came through. I’ll get started with asking you some of those.

Great.

The first one is, what do you think about the future of palliative care and what that will look like? Are there any new innovations that are on the horizon in the next few years that you could share with us?

Well, I think palliative care, my answer to that is and it’s a selfish one, because that’s what I think I’m trying to do right now, but is pulling quality of life, suffering, mortality, illness, vulnerability, intimacy, these are other words for what we’re up to here. And these are not wholly medical issues. Palliative care is a clinical discipline. That’s its kind of birthplace. But again, the subject matter we’re all dealing with here is not just a medical phenomenon. None of it is. Again, partly just to be honest, partly to invite a bigger round table like we were saying earlier and partly to find different ways of accessing this kind of care and perpetuating the mindset of palliative how to care into the world because I do feel it’s a pretty dang beautiful benevolent way of caring, of being.

In answer to your question, I think, and this is what I’m trying to do with Mettle Health. Mettle Health, come see us on our little website, mettlehealth.com. We pulled this palliative care, it’s counseling and coaching. It’s I let go of me being Dr. Miller. I am happen to be a doctor but I am coaching people in this new way outside of the healthcare system to better engage the healthcare system, to use their doctors more thoughtfully but also to be more or different from just a patient all the time, to let go of some of that framing and to blow it up a little bit. I hope what we’re going to see is that palliative care gets democratized. The table gets bigger. These concepts make their way beyond medicine and beyond healthcare. That’s one hope for where I see the development going.

Okay. Sounds good. Thank you. What do you think of bucket lists? Do they place too much pressure on us to complete them and then create disappointment if we’re not able to get to everything on them?

Thank you for that beautifully leading question. Yes, so I think bucket lists are some people like any other convention or trick or tool, sure, if it works for you, beautiful. But I have to say in my experience, it does often end up pulling us away from acceptance, makes us sort of focus versus letting us sort of let things happen and fall back and take a wider aperture and see the world and let go of this control and let go of this focus. Maybe the better way of saying is letting go of this sort of strategic thinking, everything’s a means to an end. I’m going to do this to get that. It’s exhausting and it pulls us away from this majesty of actually just existing at all. But each to their own. And I think for a lot of us, this idea of mortality does a little of both. I’d be lying if I’d say that my brush with mortality didn’t make me focus and get to work making a meaningful life and doing the things I wanted to do. Yes.

And it also lends itself, and I’m sorry about the language here, guys. I’m about to swear again, warning, but there’s a TED Talk that I saw. Some guy put this out in response to the bucket list, he did a talk on the fuck it list, which I think is beautiful. And I think it’s talking about what we’re talking about here. It’s letting go. I’m never going to get to the things, everything I’d ever want to do. Let’s just see what else is going on out there. Let’s get beyond myself. Let’s get beyond my ego’s drives and let’s just see where we go. That sort of openendedness, it’s beautiful. And I think for a lot of us, we kind of use the fuck it list and use the bucket list to suit. I might try my bucket list when it doesn’t look like it’s going to work out, I’ll defer to differ to my fuck it list. I think there’s a real sweet fluidity to move between these kinds of ways of thinking.

Great. No, that’s a great perspective and I’ll have to check out that TED Talk. Sounds very interesting. Next question is about assisted dying. Our audience tend to have lots of questions about assisted dying.

Can imagine.

This one is about your experiences in California and the law in California is of course quite different from what we have in Canada but this person is wondering what that looks like. If there’s any issues with access for folks trying to move forward with aid in dying in California.

The big wall, and the California law more or less echoes the Oregon law, which was the first state to legalize aid in dying in the late 90s, I think 1997. And I think there’re now 10 or 11 states in the US. I should have checked my map because it’s an ongoing debate in most state houses or many state houses. I think there are 10 or 11 states now in the US that have an aid in dying law on the books. And most of them look much like the Oregon law, including the California one.

The vagaries, the problems we see with our law are the big ones are one is the waiting period, 15 day waiting period. That could be tricky depending on someone’s situation. Oftentimes people, their thinking is starting to get tangential. They’ve made this wish known forever. Folks who have dementia on their problem list. We need them to be fully compos mentis to sanctify or make this happen, to give the prescription. Oftentimes even in that 15 day waiting period, someone moves from fully mentating to not. And that’s really sad, even though they had laid all the foundations for the law. This 15 day thing is problematic.

This other thing that’s very problematic is that the person, the individual has to themselves ingest, take in mechanically, take in the medicine by themselves, ingested. Well what about people with ALS who can’t move their arms? They’re by the letter of the law, they’re not allowed. That of course makes no sense. That’s crazy as a for instance. That’s another huge, huge sticking point. And a lot of us don’t have functional digestive tracts at the end of life, too. Another problem.

These kind of technicalities are a lot of the problem. There is, I need to check in. California there was going to be changes to the law that allowed for 48 hours instead of 15 days. And a lot of people are sort of just fudging on the person having to ingest the medicines themselves and finding ways of work arounds. I think people are ahead of the law here to some degree. The law is trying to keep pace but we’ll see. I think the changes in the law in California this year will help.

Great. Thank you. And a reminder folks, we do have Thaddeus Pope with us next week who’s also going to do a deep dive into the assisted dying laws in the US.

He’ll know more.

Next up we have lots of questions about end of life doulas. Someone’s asking, we’re seeing this becoming more popular in healthcare. What are your thoughts on working with nonclinical support folks like doulas?

Personally I love it. Again, because my biases to see these issues as not just medical, I have no turf issues that way. And Lord knows we need more help. Even if I just wanted to medicalize the world, I would have to come to terms with, I couldn’t train enough palliative care clinicians to do this work and I would have to find a way to collaborate with others. It happens to be that I want to so I’m very grateful for the death doula movement. Where it’s been a little chaffy, where it’s been a little tricky is where there’s not a sense of sort of mutual respect in the mix. I met some doulas who have a real, and I met this sort of same vibe when I was at Zen Hospice Project years ago. And I’ve been demonstrating this whole talk. There’s a real suspicion of the medical system and of the medical model. And I think it’s well deserved. And I also think there’s a lot of power and poignancy and capacity in our healthcare system. I am not interested in dispensing with it. I’m interested in improving it, working with it, complimenting it.

Sometimes I’ve met an energy in doulas I’ve worked with who had a real chip on their shoulder about medicine and then towards me as a physician and then we weren’t collaborating. They saw themselves as something, there was like we were engaged in some sort of superiority match or something. It was uncomfortable. A long winded way of saying, I think there’s a lot more work for doulas to understand what we do in healthcare and better understand the system before criticizing it. And there a lot more for us to do within healthcare to appreciate all that can be done without going to medical school, et cetera. I think there’s more time to build these relationships, but in short, I’m nothing but excited for the death doula movement.

Okay. Thank you. Another question here related to healthcare providers, not necessarily in the doula movement but just in general, what advice do you have for aspiring healthcare providers based on your memories of your earlier self and your evolving perspective in healthcare?

For folks aspiring to go into healthcare? Is that what you’re saying, Kelsey? A lot of them were sort of clues were buried in my talk. One is understand the medical model as just that, a model. Don’t confuse it with the totality of reality. Medicine knows a ton of stuff. It’s breathtaking. Wow. There’s a lot to celebrate and be impressed by and to utilize in medicine, just don’t confuse it with the full enchilada. That’s where the trick gets in. That’s where you get dogmatic. That’s where you get stuck. That’s where you become closed to other ways of seeing and doing and thinking. That’s a big one. Remember it as a construct. Master it, love it. Just don’t confuse it with mother nature. That’s a big one.

Second one would be to just get palliative care tenets into your bones now, rather than a lot of people have to learn, have their empathy, their compassion, their sort of subjective sense, their style, have it beat out of them through medical training and then maybe they’ll do an elective in palliative care and sort of try to salvage some of those parts of themselves. One is understand palliative care in your bones now and why it’s important and then protect those sides of yourselves, that medical training that can really accidentally not malignantly, beat out of you. Again, it can crowd out so much of a personal experience. And sometimes in medical training you’ll feel forced to choose between being a competent physician who gets to go home at night versus an incompetent physician, who cares you can’t ever leave the hospital because they care too much. Very often you’re asked to care less to get onto the next patient.

That’s really, really tricky. Be prepared for that. Be prepared for the disillusionment between the ideals of medicine and the practice of medicine and begin to build your own buffers and strategies and counterpoints to hold you through that skill mastering process. In other words, don’t abandon yourself. Don’t hand yourself over to the doctor. Patients shouldn’t, we shouldn’t as students, as clinicians. Work with them, partner with the doctor. And as if you becoming a doctor, realize your job now is much more to advocate and to collaborate, partner with your patient, not rule over them.

Thank you for that. I, I like what you said about sort of getting that palliative care basis early on. And we had a presenter earlier in the week talking about palliative care and the palliative care approach that everybody can take. You don’t need to be a specialist in any area but it’s just this basis that every healthcare provider should be practicing.

Right on.

Very interesting. You touched on healthcare advice for healthcare providers. Do you have advice for caregivers who are supporting somebody at end of life and how to support the person dying and how to support themselves through everything that they’re experiencing?

Yeah. That’s a great question, Kelsey, whoever asked or brought it up, thank you. I don’t know what the stats are in Canada, in the US we have something like 52 million informal, in other words, unpaid caregivers in this country. 52 million people caring for someone at home while trying to raise their own family, hold down a job, whatever else. It’s astounding. And yet our policy, we have a very piddly policy around support for caregivers at the national and state level. We as a society, don’t really honor caregiving. It’s more expected if you’re a partner or spouse or a kid or something. We just sort of presume it’s we should all do it and we should all know how to do it. But illness has gotten so spectacularly complicated. Society’s been so spectacularly complicated. Thanks to all our progress, we’re all upwardly mobile. And we live thousands of miles away from, there’s no longer three generations in the house, et cetera.

And we’ve kind of distanced ourselves from death in some ways. This idea that we should intuitively know how to be a caregiver is nonsense, especially without any support, nevermind training. Just to state the problem, it’s another reason this is not a commercial for Mettle Health but it is one reason why we pulled Mettle Health out of the clinical world. Because as caregivers, even though we say in palliative care, that it’s about patient and family, it’s very hard when I was working at UCSF and the cancer center, it’s practically impossible for a family member to schedule an appointment to come see me just the way billing works. They’re not the patient. When they’re in the room, I’ll tend to them, et cetera. Structurally we keep marginalizing the poor caregiver. If you’re in a hospital, family meeting is generally happening in the hallway, in any average patient room, there’s not a lot of space for family. You’re an afterthought.

In all these ways, we marginalized caregiving. Again, I keep stating the problem, not the solution. But in Mettle, we have tried. One of the reasons and one of the joys was to make this direct to consumer. Actually 65 or 70% of our clients are caregivers because there isn’t anywhere else to turn for. There are not many places to turn for support. That’s just one thing to note. You guys are always welcome. We have free webinars monthly. We do a lot of things on caregivers. There’s that. We wrote a fair amount of our book, A Beginner’s Guide to the End, to the caregiver, tips and tricks there. But I’ll just say one piece of advice would be in the same way that we, I think it’s powerful to craft a world view of living that includes death. I think similarly, it’s powerful to craft a idea of caregiving as really care receiving. Care giving this is again, the problems of language.

The truth is when caring is done well, the carer is receiving too. There’s this loop, this reciprocal loop that goes on and we need to all understand that better. Care giving shouldn’t be this self sacrificing pure draining one way street. Medicine’s filled with it. We call it pathological altruism. Doctors are the worst. The more I care for my patients, well, I’ll show that by sleeping less, having no personal life, never leaving the hospital. What the hell is that? And of course that leads to burnout and a miserable provider and so it doesn’t really work.

I guess my advice here is for you as caregiver, part of your job is to learn how to receive the stuff too, from the person you’re caring for, from the act itself. But don’t fall into this trap that you show your love by draining yourself. Of course you can’t do much good as a caregiver for you’re running on fumes. This is all much easier said than done. Because like I said earlier, we don’t have the structures and the training or the support in place. We need to create that. But meanwhile, as an individual, at least just try not to fall on the trap that good caregiver means running on fumes or yourself. No, no, no, no. Caregiving, receiving has to be a loop. You have to look for that. That’s not selfish. That’s you stocking up on energy, even if your whole goal is to just be a good caregiver.

Very important discussion. And continuing to be an important discussion as we have much older population and the healthcare system will be certainly interesting just to observe what happens over the next little bit as well. We might have time for one more question. This one’s about children and death and you were speaking earlier about honesty and openness and those sorts of themes as well. What are your thoughts about talking to children about death and dying? And if there is somebody approaching the end of their life, should a child be involved with that and around the dying person? Any comments on that would be great.

Yeah. One thing to get right off the top is, culture, hugely powerful way humans experience. It’s not just the individual. We all come from a culture, cultures. We participate in cultural activities. It’s part of how we understand life, how we experience it. It’s huge player. And yet it’s not handled very well in medicine. It kind of falls off the medical model pretty quickly because we’re interested in human physiology, not what culture might do to your physiology. Even though I think medicine is learning lessons that we’ve left culture and social bits out of the picture for too long and it’s caused trouble. But so we’re still to a place where we don’t really appreciate cultural influences on a person’s experience but we as human beings, we as people do.

Sorry. Geez, I went off on a tangent there. All that is to simply say is that first order of business here is honor the culture. If there’s a language or if there’s an approach to talking about dying, honor that, so it’s consistent for that child, so they hear the same languaging at home or at their church or place of worship or whatever it is. That would be, but that caveat aside, I think more and more child sort of developmental psychology, my own experience, others’ experience would point us to simply say that the right way to handle death with a child is to be honest, to be direct. We get into trouble. Kids generally are much smarter, more aware than we realize and they’re taking things in, even if they’re quietly playing in their video games. Read them, follow their lead a little bit.

If they’re expressing curiosity about what’s going on, if they want to come, honor that. If they want to leave the room because they’re getting uncomfortable, honor that. Speak plainly about it. Yeah, Grandma is dying and this is part of the deal. This is what people do. Someday we all will. This kind of language. Giving kids some choice. You might suggest or encourage them if they’re comfortable enough to be present physically with the person. I was when I was six with my dying grandmother and that really made an impression on me. I got to see her, touch her, feel her body as it was dying and it helped me understand what was happening. It wasn’t scary because my parents handled it honestly. It was sad but it wasn’t scary. Direct language, default to direct language, read them, assume they know, ask. Honey, how you doing? Would you like to know more about Grandma’s situation? You don’t necessarily just foist it on them. That’s the sort of general gist overhaul. Depends on the age of the kid, developmental sort of arc of the kid, et cetera. But that’s a generalism that I think holds true.

Great, thank you. Very important tips and something that we should all keep in mind when we’re crossing that bridge with somebody and a child experiencing end of life. I think we will end it there. I wanted to thank you again for joining us this afternoon and just reflecting on one of the questions you asked earlier on why should we be ashamed of dying? It just resonated so much with me and what a lot of us are trying to do in this space and trying to just create more death literacy and awareness of death and dying. Thank you again for being with us. Thank you to our audience for your engagement this afternoon. We do have more webinars coming up. Sam just popped the link there in the chat and we look forward to seeing you next week. Thank you again, Dr. Miller. Take care.

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