#354 – What the dying can teach us about living well: lessons on life and reflections on mortality | BJ Miller, M.D. and Bridget Sumser, L.C.S.W.

Hey everyone, welcome to the Drive Podcast. I'm your host, Peter Atia. This podcast, my website and my weekly newsletter all focus on the goal of translating the science of longevity into something accessible for everyone. Our goal is to provide the best content in health and wellness and we've established a great team of analysts to make this happen. It is extremely important to me to provide all of this content without relying on paid ads. To do this, our work is made entirely possible by our members and in return we offer exclusive member-only content and benefits above and beyond what is available for free. If you want to take your knowledge of this space to the next level, it's our goal to ensure members get back much more than the price of a subscription. If you want to learn more about the benefits of our premium membership, head over to peteratiamd.com forward slash subscribe. My guests this week are Dr. B.J. Miller and Bridgette Sumser. B.J. is a hospice and palliative care physician with expertise in serious illness and of life issues and death. He is the co-founder and president of Metal Health, an organization providing support to patients and families living with illnesses and he was a previous guest on the drive all the way back in November of 2020. Bridgette is a licensed social worker who specializes in helping people with serious illnesses, promoting connection and well-being and working with patients and their families during end-of-life periods. In addition to her private practice, she is a provider at Metal Health and the Palliative Care Program for adults at UCSF. I wanted to have B.J. and Bridgette on to have a conversation to explore the insights gained from working with people at the end of their lives. What do they reflect on? What do they find most important? What I really wanted to understand here was what can the dying teach the living? In this episode we discuss the physiological and emotional processes of dying, what happens as the body shuts down and how families interpret those changes, why our cultural aversion to discussing death leads to unnecessary suffering and how acknowledging mortality earlier in life can be empowering, the differences between Palliative Care and Hospice and how our healthcare system often delays comfort-focused care until it's too late. What suffering really means, how it's not just physical pain but a threat to one's identity and reality, the importance of honesty and emotional courage at the end of life and how dying can bring profound emotional, spiritual and relational clarity, insights from decades of working with people who are encountering their death, what patients regret, how they grow and what really matters in the end. We talk about this idea of how people die the way they lived and why cultivating emotional, spiritual and relational awareness while we are alive shapes how we die probably more than anything else. We talk about the role of forgiveness, acceptance and connection in dying as well especially self-forgiveness and the ability to be with what we can't control and ultimately we talk about what the dying can teach the living not just in terms of how to die but perhaps more importantly in terms of how to live. So without further delay please enjoy this discussion with B.J. Miller and Bridget Sumster. B.J., amazing to have you back again and Bridget, great to meet you for the first time. Thank you guys both for coming out here. B.J., you and I go way back. You're a previous guest on the podcast and we've spoken a little bit about some of the topics we're going to get to today but when I reached out to you a few months ago to talk about this idea you immediately suggested bringing Bridget along so let me just share with folks what I wanted to talk about and I would love for you to share why you felt that this would be a great three-person discussion as opposed to a two-person. I reached out to you and I said look I want to understand more about living and I have an idea that we could learn a lot from people who are dying and people who listen to this podcast know that I think that quality of life matters as much and potentially more than length of life and a big part of that probably comes down to things that people think about during their life and during the end of their life and maybe that there are regrets that people have that only surface at the end of life. So anyway I kind of ran this idea by you. Actually I think I ran the idea by you as do you even know anybody that would have thoughts on this and you said I'd love to talk about it and so yeah. Well first of all thanks for having us Peter it's good to see you buddy and I just love the setup for this conversation. I think we're very happy to be talking to you in general but also to continue to form the it's not quality of life versus quantity of life kind of false dichotomy that you've done so well to re-approximate so we're really happy to be here and talk about this stuff. But why Bridget I mean so for me a couple of thoughts I mean one is I just love Bridget and her mind and we get to work together and myriad ways over the years and the subject you'll hear us again and again we're going to thwart the idea that there's an objective and approach to death that is the way to go. You're not going to hear us citing much data it's an easily studied phase of life. What data do exist tend to be qualitative. With all that subjectivity it feels really important to have other voices sharing their point of view on sort of a similar outlook so that's in part why Bridget and also too for both of us which is Bridget I mean to speak for you but I think one of the things we should get up front too is my work in the last four years has pulled me farther away from being at a bedside but both of us have spent many countless hours in hospital bedsides and other places that we'll be drawing from but I think to get to the questions that you're interested in answering so much of the work preparing for dying begins earlier in life one way and another. So the idea that I think for your audience to imagine deathbed scenes that in the final moments there's this great epiphany or climax of some sort can happen but that's really not the norm. A lot of the action is in the days weeks months years preceding the death moment and death is a moment and so one thing I think we want to get across as you've brought quantity and quality of life we need to bring dying and living together they are part of a whole they're not at odds and so when do we begin dying Peter? The second we're born. Exactly so in some ways all of us have some access to the subject already Bridget and I are just a little bit closer to it on some level. Bridget, what drew you to this space? I'm sure this is a question you get asked the moment people find out what you do. It is an uncomfortable place to stand. What's drawn you to it? You know we all have our places in the world and while this is an uncomfortable place maybe from the outside for me it is a pretty comfortable place and that was what got me there. I had many people in my life die and I was in pretty close proximity to those deaths and I wasn't freaking out and so there was something in me I looked around and a lot of other people were freaking out and I was sort of like oh this is weird am I unaffected am I guarded in a way that makes it some kind of numb and no actually it was more just that there was something in me that was okay around dying and also really curious about it so that's how I got to this work. Can you say a bit more about that what if you're comfortable what were some of the experiences you had growing up? My cousin Kristen died when she was 13 and I was 18. She had pulmonary primary hypertension. I was with her the day she died and as you can imagine a 13 year old dying is a pretty chaotic scene. She was not in a like official dying process that anyone was recognizing so it was crazy and traumatic and there was just a stillness in me. I mean I was very affected there's a lot of emotion I felt fear and overwhelm but I also felt really able to be there. For others? I was 18 and the adults around me were as you can imagine all over the place and so it was less about others although I felt quite connected to her it was more about being able to be like stay in my own body and be in my own experience and pay attention to what was happening make contact with what was happening so it was a pretty internal experience and awareness. It wasn't until later experiences with one of my best friend's moms a few years later that I felt sort of that capacity in relationship to others as like a main supporter. That first imprint was really like there's something in this experience for me. PJ people who listen to our first episode will be familiar with your story invariably there are a few people here who aren't you want to give the super readers digest version of your story and how it probably shaped a lot of what you do today? For sure it did. I went into medicine very simply because I had been a patient it's not like I was preordained to head into medicine or I had never considered it but at age 19 sophomore in college around the time Bridget you're having your experience at the bedside one way or another I was in the bed thanks to an electrical injury at Princeton I was screwing around on a commuter train and climbed up on top and I had a metal watch on my left wrist and the electricity arc to the watch that was that so I came very close to death you could say part of my body died I lost both legs and one arm part of them and so that was a really big wake-up call. For people who aren't familiar with that type of injury I've seen you without a shirt on it's not like oh we just cut these things off and you'll be we'll be home Friday and we'll see you at clinic next week the magnitude of these burns the skin grafts that are required how long were you in the hospital? I was in the burning it for about three months so burning it's horrible they're just a special place it's not I don't know what to compare a burning it to for the patients or the people providing the care it is very very special people in those units yes and careers tend to not last very long for a lot of reasons these are houses of pain of a certain kind so anyway three months in that particular setting which says a fair amount to your point about the complexity of electrical injury I mean that means I was on the edge for about three months did you lose kidney function? I don't recall that I don't recall that but wouldn't be surprised if it was dinged I remember I remember looking over at the monitors many weeks in and my heart rate was 190 and just sitting there there's a lot of fallout from an injury like that and it takes a long time for the body to settle in and declare what's going to live and what's not so the amputations were sequential they take a little bit see what tissue is viable all the while the risk of the way generally people die from burns is infection because you lose immediate defenses they're line of defense of your skin so hyper sterile environment no windows nothing natural about it at all anyway so that went on for a long time until I was out of the woods and then it was clear I was going to survive and then becomes the sort of longer work of learning to cope with this new body then tailed a lot of mourning a lot of grief a lot of effort a lot of creativity on my behalf as well as a lot of people around me so took many many months to get out of that setting from the burning it into a step down unit and then into a rehab unit and then outpatient and then begins the work of reentering the world and that's its own challenge with a visible disability and as you say the skin grafts I was you know I used to be so ashamed of that look I used to cover it up there was the work of getting used to it and being comfortable in my own skin literally again and that took about two years before I was willing to show anybody this five years again hit another milestone for me to sort of being inhabiting my own life again on some level than being anything other than an object to glare at so anyway there's a lot to say about you know a very slow process and it's ongoing I recently had a procedure we don't need to go into details but it's fallout from a central line that was being placed in my neck that got botched and clotted off and 35 years later I had fallout from that so it's an ongoing process all the time I get new legs every two years or so and that's its own process so does not end so a moment ago you alluded to the idea that movie death bed scenes are probably the exception and not the rule I want to kind of explore this idea a little bit more but I also want to help people maybe understand at the population level what death really looks like so on this podcast we talk a lot about causes of death people who listen to me are very familiar with the four horsemen and we know about cardiovascular disease and we know about cancer and we know about neuro degenerative disease and we can talk forever about these things but we don't really talk about the very very end perhaps with the exception of a fatal myocardial infarction and about 50 percent of MIs are fatal but about 50 percent or not and they're just setting you up for maybe heart failure or something else so as difficult as it is I'd love for you to sort of explain the mechanics of death and we can start with the more common cause of death which is cardiopulmonary death we could talk about brain death after but I'd love for both of you to sort of describe what's happening both medically socially cognitively to the individual through that process Peter do you mean like the moments leading to the death as the body shutting down yeah in those final hours what is really happening what does it mean to die of cancer you know I think for many people it's a very foreign idea that this woman had breast cancer okay there were cells in her breast that all of a sudden acquired mutations those cells escaped from her breast and went to other parts of her body but there's still a bit of a disconnect why did the invasion of those cells to her bones and her lungs and her life bridge you want me to talk a bit a little about sort of the medical physiological stuff yeah and you can talk about social that sound right yeah starting with this sort of more cut and dry anatomical physiological things happening as a body's trying to die and I like that phrase trying to die because we often find ourselves intervening in a body that's trying to die it is one thing to get right out of the gates here is bodies die living things die I think a lot of us absorb a notion of death that it's some foreign invader or something that comes out of the woods and grabs us and otherwise I was just fine and then not no and as you know better than any of us there are all sorts of things we can do to promote life and there are a lot of ways we're wired to hang on to life and to run from anything that's a threat to us those are all true and all natural but included on the list of natural things that we do is die that's what a body's supposed to do I just want to get that clear there's nothing wrong with you for dying this is the way it's supposed to go so your body knows how to do this so let's talk about what the body knows how to do I mean in general depending on the cause of death whether the pathway might be cancer as you're mentioning or heart disease or neurodegenerative diseases there's a final common pathway of a body kind of shutting down and it tends to shut down by organ system and it doesn't follow a neat and tidy pathway it can happen spontaneously in a kind of a moment they're here and then they're gone but very often especially these days most of us like 80 plus percent of us will die of chronic illness we will meet the thing that eventuates our death well in advance of the death so we'll get that diagnosis that someday will be the thing that ends our life we could talk about that that's its own ball of wax it comes with that fact whereas in the old days many of us most of us died more spontaneously you're very alive and you're very dead not a lot of in between so in this in between thing to get to funny to your question peter is this sort of shutting down phenomenon so oftentimes if we're trying to prognosticate help a person or family get a sense of how much time is left we're looking at things like are they in and out of bed much are they getting up and out of bed so if you're asleep on the couch or in the bed 50% of the day that's sort of a progressive process more and more fatigue more and more tired that usually in the context of chronic illness tells us we're heading towards the end an interest in food and fluid is a big one so a body trying to die a gi tract that's on its way to shutting down will stop sending hunger signals and this is a big one for the audience to hear because a lot of us food equals nutrition equals nourishment equals life so if we see someone we love or ourselves not eating the impulse would be well put some food into us that's life i don't want someone to starve to death is often what we can also love right yeah that's how we show our care and exactly symbolically the act of feeding another is the nourishment the love to your point bridge it comes with that there's so much around food but before we cut over to bridge to explain more of that piece of the puzzle that you know the body again is sending you a signal don't put food in me because it will hurt if a gut is not able to process the food it sits in place and can cause pain same with fluids if we're forcing fluid into a body that's trying to die that fluid will pool and cause trouble so the judgment to call wind to push the food and fluid and when not is up to really a dialogue and a song in response with the patient you might try a little bit of fluid and if that ends up in their lung or ends up swelling then we pull back but back to your question so as a body's trying to die it will stop sending signals for food and fluid and that's to be generally respected not pushed past mental status so people often get really fuzzy in their thinking delirium is very common so oftentimes they'll be disoriented I think it's 1912 and they're in a forest somewhere where they're in a hospital bed so that's very common and BJ delirium is not uncommon in the hospital a lot of times with otherwise very healthy patients who are in the hospital to get surgery the loss of circadian rhythm the use of narcotics and other medications can easily induce delirium in a person who's otherwise not going to die is this a different form of delirium and what is really underpinning it I don't know that it's a different form of delirium per se it's a similar pathway and then it looks the same so you can have a hyperactive delirium which are very easy to spot someone's jumping up and down under bed and going nuts and acting in a way that's not comporting with the context of sitting in a hospital bed so hyperactive delirium can be easier to spot very often it's hypoactive delirium which we often miss especially in the hospital setting might just be a little tangential thinking or not quite clear on what day it is something that's not so obvious and very often the person's just silent and that's more often the case I'd say at the end of life it's more likely to be a hypoactive delirium and so it may be hard to spot and the person's been sleeping a lot anyway so you might miss it but one reason to bring it up is because if you don't know what to look for I think a lot of family members and loved ones will be at the bed trying to eke out every last moment with this person and looking for clues about what's going on for them and last relational moments and exchanges and very often I've heard from a lot of people reports of well gosh my husband never said a mean word to me in our 50 years of marriage and I've been traumatized for the last two years since he died because those last words to me were this vulgar something or other or he told me to get out of his some harsh comment oh one of those big takeaways for the audience just please keep delirium in mind because what it also means is that person who is delirious it's not themselves they are not themselves so whatever they're saying you really cannot take it literally you really cannot take it literally so that poor woman was suffering for you know if someone had told her about delirium then she would have understood she took it very literally and was suffering immensely so anyway that's a note about delirium it does feel like an important moment to pause just to note a couple of things which is delirium at the end of life we take as seriously as we would in a more acute setting where someone's in the ICU with expectation to recover and we think about environmental factors that influence delirium like lighting and noise and interruptions because if we can minimize delirium we want to want to treat it and care for it I think the other thing about this space is that we enter into the like rich and nuanced and complicated space of interpretation and the meaning that's being made around what's happening so in that story I was sitting at a bedside once with two daughters and their mom was dying and she had been mostly quiet I hadn't really talked in a couple of days and we're sitting there talking about her and telling stories her kids are telling me about her and she opens one eye and she kind of sits up and she says to her daughter I love your jacket and I looked at the daughter and the daughter just bursts into tears I'm sitting there thinking like oh this is so nice I'm expecting something positive and the daughter's like she's never complimented my clothes before if anything she always looked at my dress in this critical eye like this is so off and I think that could be one of those projections that we're going to get to the end and dad's gonna say mom's gonna say the thing that we never heard them say and they may and that might not feel good it's complicated and so interpersonal and personal and subjective and it's one of the reason why two of us being here together and why this work is done often in teams because we could both be in the room with the same person and have very different kind of hits or interpretations around what's happening what's most important in the room what needs to be tended to god but there's so much to say about this stuff and that delirium thing on this point of altered consciousness and what people are saying what's coming out of people it's also true that deep dark secrets can sometimes get revealed that's also too so but so much needs to be interpreted and it's therefore held lightly these are final moments you may never get the clarity of what mom or dad or that person actually meant in that comment which is another trick to holding death in our living is to hold it lightly we will find ourselves wanting to apply a story of meaning on all of this stuff as a human's what we do but one of the great lessons around this work is just to hold that carefully and lightly it's not always what we think it is and on that note of delirium too I will say as a medical person I was taught that delirium is inherently a kind of suffering that it's uncomfortable that to be confused to be disoriented is itself uncomfortable and it's certainly problematic for the loved ones so we always medicated it with anti-psychotics halopair and others thorazine just shut it down I will say my own arc of my career and I sort of deluded the medical piece with other ways of thinking I'm not so quick to shut that down there may be something either vital happening for that person in the bed to express whatever's in there and maybe something that's helpful for the person to hear I gave you the counterpoint that it's hurtful for a loved one to hear in a decontextualized way but I think one of the meta messages here is dying can't always be shouldn't perhaps made me to use that hard word be so tidy and immaculate and clean and perfect I want to disabuse I think we both like to disabuse that notion of that that's a good death a quiet death I've increasingly would not medicate a delirium unless I had a conversation if you were my patient I'd say Peter hey there might be moments where you can get a little confused etc and if that happens would you rather maybe there's an opportunity for me to ask it would you like us to kind of air on the side of medicating that and help you sleep through it or talk to family about that but the bottom line here is it's not such a one-to-one thing when we see this that means suffering that means medication it's much more mysterious than that one of the things I've been thinking a lot about lately is how people died hundreds of years ago and thousands of years ago so let's use thousands of years ago before the advent of any medicine at all so admittedly they weren't living that long and admittedly life expectancy would have been into the mid to late 30s but people always confuse that for meaning nobody lived beyond that of course that's not true it just means so many people died young infant mortality was through the roof tons of trauma and infection but clearly there were people that were living into probably their 60s and I'm sure some of them were dying of cancer so I wonder absent any medicalization of death what death looked like then do we know anything about this I mean I don't from the books I mean I can imagine and I think we knew that people died more acutely but to your point that's probably because they just they didn't know they were harboring a tumor or atherosclerosis whatever else so and I think an average human had a different relationship to the day-to-day suffering and pains that went with being alive and I think modern life has tempted us with the idea that we could always be comfortable and that pain is a problem to root out and fix quickly get back to the norm which is comfortable always which is just crazy talk so I think part of it is we've induced people's pain by offering these fixes to them by virtue of having something to offer your suffering we might be more primed to tune into our suffering and seek that fix for it and we've pulled this ourselves forward over time through modern life in such a way that back in the old day I don't imagine that people were so distracted by their daily aches and pains so I'm kind of getting off your question I don't think we know in these among us I don't think we know from an historical like I couldn't tell you factually what used to be the case but watching patterns and knowing that human nature hasn't probably changed so much in the last couple hundred years per se I think one is that people harbored a much that lived closer to death and live closer to pain and so in some ways they suffered less because it wasn't tainted by a sense of injustice or why me I'm projecting which is an irony because as I think about a person dying in their 80s today I think of that as kind of a remarkable privilege that we could be alive in this period of time where we could make it into such an old age but yet at the same time it feels like a tragedy even though ironically the tragedy is those people that were dying thousands of years ago I want to ask you a question Bridget unless you wanted to say something else about that but I was going to ask you a question about pain please okay so when you're talking to somebody who makes the decision to enter hospice care or palliative care I want to come back to making sure people understand the similarity and difference let's take an example of an individual who is cognitively completely intact but is faced with a terminal illness and let's maybe even talk through different examples somebody that's got something as debilitating as Lou Gehrig's disease where their mind is completely intact and they're suffering a neurologic disease that's going to kill them versus an individual with a cancer that has metastasized and is just a matter of time what are their greatest fears when they come to you and where does physical pain and discomfort rank on that list I mean it's such a humbling question it's a little bit hard to answer when you put something like Lou Gehrig's disease and cancer next to each other pick one and let's talk through yeah I think the thing I want to say sort of before picking one is the path that gets you to the intersection where you are thinking about entering hospice or able to tolerate that idea is very different as you know if you're facing neurologic illness or cancer or heart failure the experience that patients and the folks around them have had maybe quite short maybe a decade maybe with really successful treatments maybe this downward feeling slope the whole time and so you're really primed I think in different ways that intersection depending on what this last chapter has been like have you been mostly healthy and felt pretty good and something happens quickly have you been in and out of the hospital sort of in this endless cycle you're holding very different experiences and people have honed their muscle of adjusting and adapting and adjusting and adapting very differently depending on their experience of the illness they've had it's also really really colored developmentally depending on where that person is in their life are they 42 with two young kids are they 85 having lived a life they feel pretty good and full about and so those are a few of the layers of context that really inform given how much there is to unpack there and now I realize I want to go into all of that let's take the step back and help people understand the difference between palliative care and hospice care so I sort of think of it as palliative medicine is the big umbrella palliative care is the big umbrella and hospice care is the very end or the backside of the umbrella palliative care is a medical specialty usually provided by a team for folks with a serious illness serious illness can be defined in lots of ways and is defined differently in different health systems depending on how their staffed and how their palliative care programs are created to function what purposes they're serving but some of the and bj ujump and at any points but some of the big differences is that with palliative care generally there's no limitation around any disease directed or modifying therapies you might be pursuing and you don't have to be dying inherently or even clear that you're facing death you could be diagnosed with a very serious cancer that actually has pretty robust treatments and you could live for quite a long time meaning many many years so in that situation what is the objective of the palliative care team to think really holistically about who is this person where are they in their lives how do they make sense of what's going on what do they understand about their illness who's supporting them all really grounded in this are there ways that we can help this person feel sort of as well as possible to treat the symptoms related to serious illness to treat the symptoms related to the treatments of different serious illnesses but in the context of a whole life which means on a clinic day you could be seeing two people that seem on paper generally the same similar age demographic backgrounds diagnoses and be dealing with really different things when you walk in the room no matter how you slice it the goal is the focus is quality of life period whether it's pad of care hospice and by the way for both bridges so it's inherently interdisciplinary as Bridget was saying that's why Bridget's so schwork and I'm a medical doctor but we work with chaplains nurses music thanatologists potentially art therapists volunteers it's when the subject matter is suffering and quality of life there's no one discipline that has a lock on that stuff so but whether it's pad of care or hospice the focus is really on helping someone feel as well as possible and that is an inherently holistic question because it gets at their identity yes as well as possible as defined by them yeah and so for someone that could mean very aggressive pain management and for someone else they could have a different relationship to the experience of pain and they wouldn't put that at the top of the priority list they might put more concrete or relational supports higher up on their list the beauty of our jobs and our work is to meet this person in this moment in time and identify what's up for them what's most important and where it is that we get to meet them to work towards quality of life as defined by them so what is the transition then for an individual from being under the broad umbrella of palliative care into a more narrow defined level of care as hospice i mean i think there's some world of ideals in that and then there's what actually happens and the reality in this country is that folks are admitted to hospice very very late the length of stay on a hospice program this country is something like a three week average and so it's actually quite little bit of time and when i think about when hospice is a good fit for folks i think about wanting to stay out of the hospital being in a place where they are ready to or being forced to grapple with the reality that there is not anything left to do to change what is happening in their body to change the cancer to delay the neurologic illness and or folks that are more explicitly ready to be supported in their end of life care or in their transition and just done with chasing the treatment done with chemo that chemo might have something more to offer them in terms of life spent but they are just electing to be done with that whether chemo and other things have run their course and there's nothing left to try which is often the case or they feel done with what's left to try they're telling us that they don't want to try anything else either way they would be much more likely to be hospice ready now you're saying the average length of stay in hospice and really there are as i'm aware of it so correct me if this is not correct there seem to be three paths to hospice there's hospice in your home where you go back to your home and a hospice team comes there and cares for you in your home there is a palliative care ward inside a physical hospital that provides hospice care but it's still within a hospital and then there are outpatient hospice facilities dedicated facilities for hospice that are not hospitals with those three encompass how hospice care is delivered or is there another one sort of in terms of sites of care this is where it starts can get really complicated and you can shut us up here there's so many different so many tributaries but to back up a little bit it may be orienting for your audience here so Bridget's totally correct palliative care is the larger umbrella hospice is the subset of palliative care devoted to the final months of life so to be real clear same philosophy in a lot of ways but by insurance and reimbursement lines and by policy designation you can get palliative care alongside curative intended care you cannot do so in hospice when you go on to hospice you have to give up that curative intended care and not just that I mean you can't have an IV line generally speaking so the way it's set up is a crossroads will make the point that dying and living look a lot alike but in the man-made world of policy and health care structure there are some important forks in the road so one of them to go into hospice is you no longer have access to or don't want curative intended care and things that go with it and also someone somewhere has to certify that should nature run its course you likely have six months or less to live so those are the two forks in road to qualify for hospice neither of those applies for palliative care so that's a really important distinction one other point to make there is while palliative care is the larger umbrella hospice is the older one so we started in this country with hospice and since the 1982 when medicare got in the business we had those restrictions and then people in the 80s and 90s realized like why are we waiting to the final weeks and months of life to deliver this kind of loving care and so that palliative care was born as a younger bigger sibling to get outside of those restrictions so it's a wonky history well what's interesting is you just said that hospice care was the original it was six months of life expectancy and today we're at a point where median or mean is three weeks in hospice well if that's true and we think about what we know about what an individual looks like when they have three weeks left of life this is usually a person who's already in delirium already in the early stages of organ failure this is a person who probably is already spending more than 50 percent of their time sleeping and what i guess i'm hearing you say or maybe i'm imputing is should they have moved into hospice sooner have they been unnecessarily discomforted by pursuing therapeutic intent until that three week mark on average in broad strokes in general the answer is yes i think we know that patients and families wait too long they're suffering more than they need to and taking on treatments that are no longer helping them for a longer period of time that there's a what can feel like a charade portion of care and there's a lot of reasons like patients and families not wanting to look at that piece of the puzzle yet denial is a thing you know and also referring physicians perhaps is the bigger reason that they are not seeing the writing on the wall or don't want to or whatever else so it's very often that the physicians don't bring up hospice until way late in the game so for many reasons i think it is a generally true statement that we wait too long to invoke hospice we wait too long based on our own stated goals of feeling peace and having some comfort towards the end and not wasting our time doing things that don't help us and we also get into these situations where my wife tells a story about one of her very close friends who died in 2018 she had an abdominal cancer and her wish was to die at home she was re-admitted i think for a bowel obstruction and she was never able to get out of the hospital so she died in the hospital and this is probably not an uncommon situation where i think back to patients i took care of who heroic measures were done so maybe someone had an aortic dissection or a ruptured abdominal aortic aneurysm they're old they already have organ failure you go ahead and do it but this is a person who was cognitively completely intact when they came in three weeks later they're intubated they're on dialysis you can't transfer that person to hospice because they can't have the ventilator you can't have the dialysis the moment you turn those things off the person expires so they're going to expire in an icu never what they wanted probably but how often in your experience are people in that no man's land where they now have missed the window to go into hospice all i can say is not uncommonly i don't have numbers of sight but that is not an uncommon story and that's why if the second i hear someone say i never want to die in a hospital my ears go up as a potential refer like we should really look to get this person to hospice as soon as possible bj i've never made anybody who wants to die in a hospital i'm going to go on record right now and say i don't want to die in a hospital now i hope that my death is 35 years away 40 years away if i'm lucky i don't want to die in a hospital i've watched too many people die in a hospital it's never ever ever what you imagine it should be or could be the goddamn beeping the smells the noise the chaos it is awful yeah so if you are my patient you are our patient it'd be interesting to to go down that road a little bit and bredge you may have different things to say but i hearing that and the stridency with which you say it versus like i don't want to be in a hospital hospital suck but to hear that kind of level of passion which comes from having been there exactly most people might not be as adamant about it as i am but they haven't watched a thousand of these deaths all the more reason for me to really take what you're saying very seriously you know where of you speaketh here so if i were in any way involved in your care i would just pull up a chair and say peter i heard you say that buddy and first of all i might ask you like is that a throwaway comment do you mean that today really get behind with what you're saying there and to see how durable a choice that is and then i might say to you very explicitly like even in the abstract peter someday as you know there's going to be something that's going to come along is going to ventuate your death so you and i we're going to keep a real hawk's eye on this together there's going to be crossroads along the way around treatment decisions and what your oncologists or cardiologists or whatever doctor may not share with you is what it means to take on this treatment and what might happen together you and i will interrogate all these decisions and really dig in to see what might land you unexpectedly in a hospital in ways that you're kind of feel stuck and i would also say to peter part of dying well is also letting go of all the things you can't control and there's going to be so many things that we can dictate that's right i could get into a car accident tomorrow that ends me up in an icu where they struggle valiantly to save me but i still die that means i'm dying in a hospital yeah so i would sort of disabuse you have some absolutism around this but you have just given us our marching orders as the thing to let go for you as peter atia to not suffer more than you need to where you are when death comes is a huge point for you so that's noted so we'll wrap that into our care together as we move through time and we'll make decisions with that in mind but that is because you were explicit about it and you say most people they don't know who wants that hospital that's true but that conversation rarely rarely actually happens to get that goal stated and into the kind of care plan let's give a couple of examples of where that discussion has relevance so now let's go back to a couple of these examples so you've had that discussion when a person is still in palliative care before transitioning to hospice are you sometimes waiting to have that discussion in hospice for the first time about where yeah where i think it depends i mean i think it depends on the kind of clarity or adamance a person comes into so it might be one of the first conversations you have if somebody's had a really visceral experience in their own life it could be the first thing they're thinking of with the diagnosis of a advanced cancer or something and it may be a conversation that's happening weeks into hospice depending on how things have evolved with the family and or how they're changing i do want to just step back which is i have seen very beautiful hospital deaths i think the reason i'm so jaded is where i came from you're running codes on people who are dying yeah they're dying while you're doing chest compressions on them and you're shocking them and you're breaking ribs so yes i should really clarify i'm coming at it from a very narrow point of view that has maybe maybe skewed my view too much and that's worth a conversation we're all informed by those experiences i'm not a physician so i haven't had this experience but i think coding someone while they're dying is a incredibly painful experience for the team providing that care potentially but i have seen beautiful hospital deaths and i have seen people very clear in their sense that not dying at home is the goal that to die in their living room with their kids watching is intolerable to them to know that they're leaving their family with that imprint because it is an experience that we've plucked out of our living rooms and most people don't have a familiarity or comfort with it plenty of people maybe especially younger people who are dying are very clear like no no i'm not gonna do that at home and if that means i'm in an acute care setting like okay that's fine with me and preferred and by the way from an insurance perspective because that must factor into this is there a fundamental difference in what an insurer either cms or otherwise will provide based on those options i mean it's a great question i kind of go back to your initial laying out of the three trajectories into hospice and i think we should be really clear the lion's share of hospice is what they call and reimburse for as quote residential hospice which means in a place someone's living their home their assisted living in a car sometimes i mean right really where people are it also could include hospice facilities like the resident hospice residences which are uncommon in this country very rare yeah so 80 percent of hospice happens where people live okay and the remaining 20 is either in a hospital hospice unit or a dedicated hospice facility or nursing home or nursing home why is that rare i would have assumed that the most economical and desirable place to provide hospice care would be in a dedicated facility it's the assumption so i've had hundreds of conversations being the social worker to go in and describe hospice and give hospice education and what the assumption is is hospice is a place that you go to die and overwhelmingly that it is not true hospice is a service that comes to you where you are i mean there's a lot of people that feel like you're suggesting hospice you're going to send me away to die and that is a barrier because people don't want to be sent away but then there's also disappointment of oh there aren't like a plethora of choices of places for me to go we actually have to like figure out how to hunker down and make this happen at home and what does that mean in terms of resources what is provided so if an elderly couple who live alone one of them becomes terminally ill elects hospice let's just assume that if it's the husband who is sick that the wife is not physically going to be able to do much she was able to care for him before he had one critical last event because these things work typically is a step he's sick but then he falls and that's the straw that breaks the camel's back does the home provision cover full-time support no nothing even remotely close so how would she care for him if he is now bedridden requiring pain medication requiring medication for sedation and any other form of comfort care how would she clean him yeah you're pointing to i think one of the biggest systemic issues we have in this space which is little to no reimbursement for caregiving so what does home hospice mean then if you're not giving that it means an expert team that's available 24 hours a day and comes to you basically as needed that could be once a week that could be once a day certainly i think the goal is often like a couple of times a week this is part of why hospice is underutilized is because it doesn't always have the resources that people need to manage care at home and the reality is is that when somebody goes home it's usually a communal effort folks are coming in and out when they're not working they're taking off time working they're pulling in friends if there's the resources they're hiring caregivers which is quite expensive thing to do it's a huge lift on caregivers care partners and families to have someone die at home i didn't realize that so you're saying that if a person elects home hospice care and they need full-time support they're paying for that out of their own pocket yes yes that can't be cheap no no i mean there's multiple ways to hire caregivers in the bay area for example the range the hourly range would be something like 20 to 55 an hour kind of depending on if you're hiring and you know that's just like a home health yeah yeah because there's so much to say this stuff here peter i mean as you're talking you're reminding me about this home point just to make this case a lot of us in the abstract would say i want to be at home when i die but then when it comes down to it when weeks turn into months and the family is burning out because it's at least 23 hours of the day is family and friends doing the work so a lot of us say i want to be at home but when it comes down to it that is not always necessarily the easiest place or possible or even possible for all these reasons so do your question about why are there not more hospice houses if they are not willing to pay to have someone come to your own house they're certainly not going to pay for you to have a facility exactly the medical system separates the social services from medical services so the room and board of a facility the infrastructure of the house those will not be considered medical issues so therefore are exempted from coverage so i worked at one of the very few hospice houses in the country and it had to close as famous as it was the world over this sweet little six-bed hospice was known all over the world and it couldn't make it because there was no financial pathway it's complicated there should be more of these places and to note around your very reasoned incredulity there because it's much less expensive when the alternative is to go back to an acute care hospital but as you know this is not a rational system per se you know it's why you see of that couple that you mentioned where he's dying and she's home and she can't bathe him she can't deal with his bedpan it's why you see in those stories people go into the hospital go to subacute rehab max the medicare days go home go back into the hospital because there is this sort of not always explicitly called out or intended sort of like how do we maximize the benefits that are here it's one of those examples and unfortunately medicine is full of these especially in the united states i have a lot of great things to say about the health care system here probably know where i'd rather live with respect to health care but there are so many examples just like this where both the payer so i would say all three the payer experience the provider experience and the patient experience would all be better with a different system totally it's more expensive it's worse for the patient it's worse for the care team to have the patient do what they have to do now to game the system it's a real shame that even if you didn't care about the quality of an individual's life if you just acted economically just the bean count if you just fall in the beans that's part of the joy and craziness of working in this part of the health care system you get a line of sight as you say there could be this alignment where it's better care for everybody involved and cost less money the whole pout of care in the hospice world has done a really good job over the last 40 years of gathering data we save the health system lots of money we improve care this stuff works but it's still not rootinizing the system for all sorts of reasons the six-month prognosis component of the hospice benefit was really an arbitrary choice in some ways that was about getting it funded the sort of original thinkers were like yeah this should be a year and that's probably more right you should be eligible if you're prognosis but the fact that it's three weeks on average tells you how many resources are being of course yeah drawn out of the highest price provider yes if we're thinking about the last weeks and months and the swirl that's happening because you're getting sicker all of these things are changing in your life so much is changing your touch with the health care system is really high that in that time to also get really sober maybe for the first time about what's important to you where do you want to be can you see this thing clearly like it's almost an impossible time to do that let's focus on that for a second because this strikes me as a cultural issue you two live in this world I would say I'm adjacent to the world but I don't live in it and most people aren't even adjacent to it so death is a really foreign thing the reason I suspect that this can gets kicked down the road so much so much in fact that after all the can kicking people get to the end of their life there's no road and there's just a pile of cans so what is it culturally that prevents us from talking about this when we're 50 when we're 60 when we're 70 when we're 30 yeah like why is it because it's become such a I don't know if I want to say it's a black box I don't want to say it's a mystery but it's just something that we don't want to talk about and as such I really believe that that's why we get to that three we okay fine we're pulling the plug it's three weeks and you fall off a cliff kind of thing do we know anything about other cultures how is it in Japan how is it in Europe how is it in in other parts of the world do we know anything about how end of life functions there a little bit culturally there's a lot to study and be so fun to take a couple years and really study the anthropology around dying and how cultures do this differently we've been dying a long time it's our greatest skill yeah you will not fail at it see the only thing you will not fail at promise you and I think what you're calling attention to there's the culture so I scan the navy and cultures Japan a place that venerates its elders and aging and dying are different but they bump into each other a lot so my armchair read on say life in Japan where the comfort of being in old skin might be a different experience but you're still left with the sort of natural phenomenon and cultural phenomenon of aging bumping into this healthcare system idea and that is the cognitive dissonance we have these systems that are engineered and wired in such a way that are so at odds with mother nature on some level and so blind to cultural issues in the name of science in so many sort of reductive ways still if you were in Japan I think you'd still find a healthcare system that struggles with this question even as the culture maybe doesn't as much similar probably in Scandinavia but I think in those places I know the Scandinavian model one of the things that comes up for people then of life is other living issues like housing like your relationships they're still there so one of the things that makes dying harder in this country is the social determinants of health in society are not cared for so you still have your housing issues when you're trying to die you still got bill paying things that are you know that's the stuff that makes dying extraordinarily hard in some cases or in many cases so you're saying the wider net of the social safety net here compared to a country like Canada or Scandinavia or Japan presumably just adds one more stressor to an already stressful situation largely and it any one sense doesn't do it justice because as you said the healthcare systems these places they can also do amazing work and so I don't want to just blindly categorically denigrate a healthcare system in any country there's some good things happen but it's such a mixed bag and as many problems as it solves it creates some other ones especially around issues that people are struggling to look at to your point still holds we do have a problem in why Bridget and I came this far science to see your smiling face but to talk about this in such a way that allows an audience as large as yours to begin to think about this before it's too late this is I think all of our work as citizens to begin to rope this part of reality into our view so that we can prepare ourselves for it and we can live with these realities and not be so surprised by the fact that we die someday in part is so that we learn how to advocate for ourselves versus yeah I'd love to see our health system mature around these issues and we'll continue to work on that or towards that but I think the bigger note for your audience is what can each of us do to prepare ourselves in ways that the health system is not to die well in this country at some point you kind of have to say no thanks to medicine one thing your audience needs to appreciate and why advanced directives are so helpful for example is the default modes of our healthcare system would be just do more stuff prop your body up anything to give you a pulse unless you've written or stated otherwise we're going to try to protect you having a pulse most of us don't equate having a pulse with actually really being alive and that becomes a problem at some point we in this carnival where we can really prop up a body almost indefinitely you have to find a way to say no to that and unwind what that hospital can do you have to get out of the way of that to die peacefully in this country does that make some sense PJ makes so much sense and as you're saying it I'm just reflecting on the internal struggle that I think most nurses and doctors experience we don't talk about it much but I remember during residency the pride that I took in how heroic we could be what we could do for a patient in the ICU how many central lines I could put in you and how I could look at all the different cultures and figure out the five antibiotics you need and how good I was at managing your dialysis and getting that CVVHD to manage the pressure and this and that and how I could alter the aortic intraaortic balloon pump to just keep your heart like there was such a sense of awesomeness in like this technology it is awesome but then you take a step back and you're thinking what am I doing what am I doing this is a physiologic experiment it's not a life anymore yeah yeah and you would say well is there a chance that this person is going to recover well of course there's always a chance but how big does that chance need to be for the expected outcome to justify what you're doing and there's two ways to answer this question the first is economically that's an easier way to answer it because expected outcomes are probabilities it's what is the expected outcome of this survival multiplied by the cost of this intervention you take the dot product of those you add them all up there's the cost of your healthcare system with respect to end-of-life care let's put that aside there's the human one how many people are spending their last weeks or months in an ICU where they are for on tents and purposes no longer there the amount of sedation you have to put on a person to keep them in that state is extreme they're now swelling into a Michelin man and is this what we want their family's final memories to be of that as you're talking I just like feel I have such visceral memories of sitting in those family meetings in the ICU where the person in the bed is unrecognizable and the expectation that physicians and nurses and social workers and spiritual you know the healthcare teams should be able to have all of that expertise knowledge not all of it just some of the expertise knowledge that you just outlined and then also the very nuanced interpersonal capacity to with a relative stranger ask some of the biggest philosophical questions in a moment of crisis I mean that is like in some ways a beyond human expectation of physicians and many do it with profound grace and beauty even when it really doesn't feel like it to them but that's where the consumer side or the patient side is like come in having wrestled with it not because you were given a diagnosis of a serious illness but because we all do die and that gets back to your original question like this is hard because it's kind of impossible to imagine not existing anymore to actually psychologically spiritually philosophically grapple with I'm here and I won't be and my children are here and they won't be and my spouse is here and they won't be and maybe I can kind of wrap my head around that being true for my grandparents maybe and then my you know this is a fundamental contemplation of being human and it's a good muscle it's a life-giving muscle I think to start to flex when you are healthy when you feel good when you're like it is actually true that I don't know when I'm going to die it could be because I'm hit by a bus it could be from some unexpected instantaneous physiologic thing or it could be some process when I'm 85 like we don't know and collectively we have a hard time talking about and being in spaces together when fundamentally we don't know. So let me ask you a question let's assume we put you in a role you're an advisor that walks through the oncology ward outpatient oncology so they bring you in for a consultation with and maybe you tell me this is actually not a bad idea but they just say like we're going to bring you into the outpatient onc ward on Tuesdays and we just want you to meet the patients. Now these are patients that are in all stages of oncology so let's assume that this is a breast cancer clinic and that means you are dealing with women who have just been diagnosed with pre-cancer Dr. Carson Oman's I2DCIS all the way up to women who have progressed through every intervention and are now facing completely unresponsive stage 4 cancer. You are introduced to Jody Smith she's 42 years old she's a mother of two and she was recently diagnosed with what is turning out to be a stage 3 breast cancer so she has a mass in her breast that they have removed and at surgery they also found lymph nodes under her arm but the workup of the rest of her body found no evidence of cancer so she is now going to undergo chemotherapy plus or minus radiation and by the way I'm not entirely familiar with the odds on this but let's just say it's a 50% chance cure rate. There's a 50% chance that this is never going to come back there's a 50% chance it will come back and by the way if it comes back she will die from this. It will go on for years but it will come back in a distant organ. What would you say to her when you introduce yourself and let's just assume she understands why you're there and what you do so if she says to you do I really need to meet you shouldn't I be meeting my cancer doc what would you say? I mean the do you need to meet me question is interesting. What I would want to know is what has this experience meant to her so far? Let's say she says this has been the most jarring terrifying thing I have gone through in my life. I'm 42 I have a 7 year old and a 5 year old that are my world it has never crossed my mind that I wouldn't be a grandmother and I'm now being told there's a 50% chance I won't be a grandmother but I'm a fighter and I have faith that these are amazing doctors and it's a coin flip I'm going to get heads. Yeah yeah I mean I would join her in that I think I would also want to normalize the fact that she has never imagined anything other than being a grandmother I mean I think so much about those initial encounters or meeting of somebody is about rapport building right you have to get into a back and forth so that they feel you as another person there that's curious about their experience and you were quick to kind of add context for me but actually the process of someone feeling comfortable to say I've always imagined being a grandma and I'm going to be a grandma. That's probably three discussions right? Sure well it's at least there's at least I probably maybe know her kids names or she's told me something like she's asking me yeah it's okay skipping ahead but it's also skips over into like the relational component that people I think are sometimes caught off guard by and also really welcome because they have been having this experience and nobody's had the time to say how are you what does this mean to you? Oh you're waking up at night what are you thinking about when you wake up at night? What is the biggest worry that this brings up for you? Has it crystallized something into greater clarity? I mean it seems to me that first of all based on the definition of palliative care she would be a great candidate for palliative care because she is still 100% full core press treatment but palliative care would bring in she doesn't seem to me that she needs someone to manage her pain she probably needs someone to talk to talk about what she thinks about when she wakes up at four in the morning scared to death yeah right because that's probably not something her oncologist but she may need somebody to learn about other impacts of the treatment and how that's affecting her life and is there anything to do to mediate that so maybe her interest in sex or her sexual function has changed and nobody's asked her about that nobody's thought with her about like what can you do to adjust and adapt to still have access to that part of your life even though you have stage three breast cancer or with stage three breast cancer. How many of the theoretical patients that I just described of which there are tens of thousands in this country if not hundreds of thousands how many of those patients are in palliative care right now in very fraction yeah why a couple reasons come to mind one is that people conflate hospice in palliative care and so people say I'm not ready for palliative care when they're saying I'm not ready to think about dying yet the idea is once I'm in palliative care we're not fighting we're not treating which is untrue untrue and once you get into the room and you say what palliative care is and people meet you and they'll feel you they're like who wouldn't want this I'm wondering if I should be in palliative care right now by the way the reality is I mean palliative care is just good health care yeah it is just one of the reasons it needs a rebranding but yes yes it really does I mean oftentimes we're doing these very basic things what feel very elemental like sitting down and saying hi Peter I'm BJ introducing yourself with some of the magic about of care I mean that's a little extreme but that's true often what Bridget is doing our people colleagues are doing is just some very elemental work that gets skipped over at everyone's expense so that's true but I also don't want to land there the work of palliative care while often is very rhetorical not just the prescription pad for the MD we don't value the psychological elements as much the relational elements existential elements so I don't want to say the work of palliative care is easy it does tend to the fundamentals of care in ways the rest of health care doesn't but it doesn't stop there there is a real skill set that Bridget has for meeting you timing her questions how she hears you when she calls this conversation and saves it for the next time when she decides to bring up the potentials for suffering when she introduces mortality those are all that's a real felt experiential thing that doesn't just happen haphazardly so I guess I'm saying two things there's a real skill set to this work that often gets short-sighted which is another reason why palliative care doesn't get invoked very often is you'll hear physicians especially and other people have systems oh I don't need pad of care I do that or they're not ready they're not ready or I'll take care of that because they're saying like I care about my patient I treat their pain that may be true to a point but very often why people don't get pad of care back to your important question there is one a misunderstanding what pad of care is two an underestimating the work that goes into this relational stuff and so therefore a lot of people pretend or think they're delivering pad of care when they're not and third would be capacity we don't have enough of people who are trained to do this work so those are big three reasons why people don't get into pad of care so let's say you get to know her better let's just say she says you know I really love being able to talk with you about this stuff because I'm scared and by the way this treatment's hard my hair is falling out I'm sick I don't have the energy to like play with my kids right now like there's a lot of stuff in life that is really difficult even as I am hopefully going through this journey to come out on the other side healed how often would she get to interact with the palliative care team is this an insurance-based question again a health system it's a health system staffing question and also question about in any given system sort of what are the named priorities of palliative care in that system which can be quite different so there isn't a great way to answer that question I think it depends on staffing it depends on if she has other supports if there's a way to connect her to other supports and I think this is where our work at metal health I think folds in because the health system is not staffed or primed or any other number of adjectives to support people in the ongoing way that most would benefit from that's really a community-based resource issue or intervention it's like where people are actually living their lives with this illness is where that support is going to come from and you know I think most people find that in their lives from their spiritual community or church community or friend group most would benefit from having somebody outside of their lives sharing your fears with me is very different than sharing your fears with your friend who's having their own very personal like you can't die how would I live without you you're supposed to be a grandma with me like don't talk about that they're bringing all of their own myriad protections and guards from this subject into their caring for that person I think so often when we meet people in this counseling space we might be the first person who hasn't with all of the love and all of the good intent minimized what the person is sharing because it's hard to tolerate our people's fears we want them to feel better we want that to stop for them and so we say things like oh but you're gonna be fine like look how well you've done so far it's gonna be okay so how would your interaction change if I put you into a neurology clinic and you were meeting people who were all newly diagnosed with Alzheimer's disease so now we have people who who show up with cognitive impairment but they're still good they're actually still okay but they've now had that amyloid PET scan that demonstrates the buildup of amyloid in their brain and certainly to the eye of a skilled neurologist the diagnosis is unambiguously clear it's a clinical diagnosis of course they've now been given the diagnosis you are in the early stages of Alzheimer's disease we don't know the speed at which this is going to progress but we know that it's more or less monotonically going to get worse what are you asking that person I mean this is a very beloved space of mine that I've gotten to spend more time in in the last few years and I think for a lot of people one of my first questions is what have the doctors told you what do you understand because a person may have had many visits with their neurologist and the neurologist has given very clear information let's say that this person for the sake of this case study watched their parent die of Alzheimer's disease and there's a strong hereditary component here and they now understand let's just say they've been in denial for the last year while they were noticing some changes exactly they were like oh I'm probably just a little tired it's probably just you know a little distracted but now they've been confronted with there's the amyloid PET scan there's the C2N blood test and here are the results of the cognitive test and you are on the same path as your your mom or your dad and they remember they remember what it was like for the last four years of that person's life so let's assume that there's not a lot of ambiguity in their mind about what what's happening what's going to happen yeah I mean I'd want to know more about their experience with their parent I'd want to know the things that they're most worried about I'm gonna just say I am most worried that I'm not going to be able to care for myself that the people I care about are going to need to take care of me and it's going to inconvenience them and I'm not ready to lose my mind like I'm young let's say this person is 68 years old this is on the verge of being early onset and they're realizing that that in another couple of years they might not be sentient this is a high-functioning individual this is a person who is still working who is contributing who loves their life and they're basically mourning the loss of that yeah I would not interrupt their mourning of course to their feelings and it's sometimes that's hard for me to like pluck questions that I would ask out because it is such a like in the moment thing tell me more about how much you don't want this to happen why what's the worst case what happens between now and there there's a certain amount of creating and allowing for space for people to say the things that they're catastrophizing in their minds that they're so scared of that they don't want to have happen to lay that land in order to come back to in a trajectory yes you've laid out like a path but also so much uncertainty actually for like how the progression will happen and when and what the changes will be just how hard it is to not know what that will actually really look like what are the considerations because again they're just in palliative care they're going to go and try all sorts of therapies deep down they know that the therapies in this space are far less efficacious than the woman you met earlier with breast cancer where she's really got a shot the most these therapies are going to do is slow things down but look if you slow them down enough maybe something experimental comes along so they're going down the path of i'm going to do this palliative care thing because you seem like a nice person and i like talking with you i'm going to do everything i can to slow this down so now let's fast forward a year or two things are getting worse what are the things you want to understand before you're so far gone walk me through the things you need to do to help them in their family prepare for what is effectively inevitable i mean bj jump in if there's things bouncing around for you well maybe i could say real quick to kind of just double click as they say and what you are saying i mean though early work whether it's a cancer patient or someone dealing with Alzheimer's that early work is so much of relational getting to know the person laying out a safe place for them to fall apart share their fears without being shushed all that stuff so a bridge it's saying that i just really that's really key and that might take all of the first visit you may ask no questions about the diagnosis it might take five visits before you get to anything for the reason you're supposedly there all that is to getting to know a person because we know there's some magic in a person being seen bearing witness them getting to express themselves is its own therapeutic value but then as the provider you are learning about what makes this person tick what inspires them what turns them off what do where their fears lie etc so you're gathering all this knowledge that that'll help you as you go down the road with them over time to be able to spot the look around the bend a little bit for this person and see what might be coming up for them and then you can sidle up to them and say hey remember last time we talked about this or that thing or remember you told me how much this or that thing is a source of fear i just want you to know i'm going to be here with you it just lends a much more specific ability for you to accommodate and accompany this person that's so much of the work is really it's an accompaniment and looking around the corner with someone before we move off that into other things i just wanted that to get really clear what Bridget's points are not casual kind of you're not just stalling for time that is the early lattice that's the foundation that's the foundation then the person gets to feel seen heard and held and then when that trust is in place a lot of other things become possible so just to back up it's not inherent that because somebody saw their parent die of all timers and they've been diagnosed with all timers and it's the worst thing that they could imagine it's not inherently true that it ends up being the worst thing that they could imagine we don't tend to i'm going to speak in a massive generalization but we don't tend to anticipate our ability to adapt very well especially when like the worst case thing is happening sometimes having been intimately involved in this worst case thing you surprise yourself or your kids surprise you know there's these things that unfold that you wouldn't have guessed would be a part of the experience and i think i really try to hold space for that to stay curious about like okay you're very sure that this experience is going to look like this and together we'll see what it actually looks like and feels like in this instance let's say that this person was also married or partnered i'm just so acutely aware of that spousal or care partner experience sorry to interrupt you but are they also a patient or is there a patient confidentiality thing where you can't really be there to support them because your patient is the spouse the foundational documents about of care the unit of care is the patient and family oh okay so this is a very unique part of medicine then yes in a number of ways and that's one of them we still bump into the western autonomy individualistic like the patient is the patient we are not documenting in the chart about their spouse or if we are we're doing it very carefully but you have more you have more latitude because you can think of the entire unit of support that that patient would define and in the experience of all timers the person whose body that's happening and if we don't start to get better at this in a major way her often experience is central to their well-being how far into this relationship are you broaching medical decision-making power of attorney things like that i mean these are those difficult discussions in that they require sort of a cognitive acceptance like i'm actually now putting medical decision-making into someone in his hands who are not my own because in the future i'm going to lose the capacity to make those decisions i mean how difficult the discussion is that i think it really depends on the person have they really truly managed all of those decisions by themselves or they're used to some back and forth or they have a different model that's quite intertwined so for some people that's really hard to imagine i think in my experience in the neurologic illness space so often if a patient has someone which not all do that person's coming to visits because they've been showing signs where they're not remembering or they couldn't get to the doctor's office on their own or get the zoom up by themselves etc so they're often presenting with somebody else and there's immediately another person to engage with their experience the number of times spouses adult children are immediately brought to tears with the question how has this been for you because no one has asked them not because they didn't want to but usually because they don't have time right the neurologist is mostly there to think about the patient yeah yes and this gets complicated all these things are such tips of icebergs i mean and that unit of care thing even in pad of care and one of the reasons why we started metal outside of health care is to make good on that promise yes the unit of care is patient family but when i was working in the medical system in the cancer center or anywhere in the medical there's no way to bill for the spouse so we'd sneak that family into the side door sometimes i have an appointment with them or we would dovetail it in the appointment with the patient so yes there is space at least intellectual and emotional space preserved for the family members but very often it's still short shrift gives the billing issues so there's a lot to say about that and that's another reason why metal i mean probably 60 percent of our clients are the family members because there's just no place no one's asking about their experience to bridge this point what are some questions you're going to ask that patient as their cognition is declining and things that you need clarity on from them their wishes what do you want to understand well you brought up advanced directives and advanced care planning spend a moment on that we should all if you're 18 in this country you should have an advanced directive and my guess is virtually nobody who's young and healthy has one true i mean virtually anyone who's older and isn't healthy has one exactly i mean we ask these questions in studies and also just casually if you give a talk yeah how many people have an advanced directive maybe 20 percent of people raise their hand how many people think an advanced directive is really important most people raise their hand many of us are not doing the thing we know we're supposed to do this this deferrable thing like life insurance anyway so one public service announcement here is advanced directives very important and you can download a form online yes you don't need a lawyer to do no you do not need a lawyer to do this and the most important thing to come out of an advanced directive if you had a picture of one of the questions that gets asked it's probably the proxy if god forbid you all the sudden an accident or something happens and we can't ask you peter what kind of care is important to you who do you want speaking on your behalf in such a moment is that and that's probably the most important question to get clear you know why would a young healthy person think about that so my first advanced directive i was in my late 20s when i actually finally did it even though i've been in these conversations for a long time and i one day was imagining something unexpected happening not being able to participate in a conversation lying in a hostile bed i was imagining my parents who do not speak to each other trying to make decisions over their child and my casual mostly casual partner at the time kind of sitting there trying to figure out how they belonged in the scene i was like i don't want that for them regardless of what happens to me and my body or what they actually choose to actually put myself in the position of the people that those choices would default to i didn't want that for them if i was at all sentient i definitely didn't want to hear it i didn't want them in throws of totally unexpected grief to be trying to negotiate that relationally it's an awesome responsibility i'm very honored to say the number of people that have asked me to be the decision maker for them i can't imagine how many have asked you this i mean there are more than a dozen friends who have asked me this and i say the same thing to all of them which is it's an honor to do it but we have to sit and talk you can't hand me that stick yes yes and just sign my name on there exactly we're gonna have dinner we're gonna have a bottle of wine we are gonna talk this through i need to know how to do this job you need to understand what you want and don't want good on you because a lot of people don't do that and again the job is not for you to insert it's not my will yeah exactly your job is for you to honor the other person's wishes speak on their behalf so to do that well you have to know the person's wishes and that's not a couple of questions that's a big old conversation and just as you do with the bottle of wine and dinner like that's what we're doing with patience you're setting a table that's comfortable often you're sitting you're asking intimate questions as providers you may be sharing intimate details too as part of a relational set a table for intimate things to happen so i just want to borrow your table setting there that's what we do too it's an important piece of getting to this level of detail and it's also true you don't have those conversations once Bridget's saying a lot of really important things i want to double click on another thing like the advanced rective the conceit is problematic right out of the shoots you're asking someone to put in themselves in this future oriented position where they're in a situation that they can't imagine where they can't speak and so what will they want then it's as best as we have but it's a problematic tool and as people move through life with illness or disability their realization of what they can or might like to live with shifts we have data around this you ask a bunch of healthcare providers if you were brought in your own emerging department quadriplegic from an accident would you want your colleagues to save your life most providers say hell no i could never live like that go ask most people who live with quadriplegia if they're happy to be alive and say yeah i couldn't have imagined same with me i hey you're gonna lop three limbs off you'd cool that i'm like no but as it goes in this life we are adaptive we have capacities that we don't know until something comes along to pull them out of us so part of this mind bender of an advanced directive is to allow room for a person's sense of themselves and their capacity to change in any direction so all of that is a preamble to say you have these conversations over time multiple times and let the person change over time this is one of those places where you want to focus on the things that are important to you the experiences that are central to good days to meaningful time because having counseled a lot of people actually in the acute moments of having to make these decisions being able to reorient them towards you know what i've heard you say is that your dad was always in his garden he wanted to be at home if he could hear your voice that's what was important to you blah blah blah the ventilator doesn't get us there what are we moving towards is much more motivating than not doing x y and z not intubating not resuscitating because those things for most people exist from scenes from tv shows and are still pretty far away but it is easier for people to choose the scene that we're going towards that they can square against how they knew their person there are people who are very clear about abnc interventions being something that they would never want and i certainly honor that maybe i hold it with a little bit of grain of salt but i honor it i'm more interested in when i have been asked to be in that role to understand what makes this person's life not because it's gonna perfectly translate if i can't dance under the full moon in bali like my life is not enough and you're like okay but what if you could like see the full moon from your bed we adjust that's a really important point bridget i've never thought of it that way i probably have just always had a bias towards okay what are the things we don't want to do what are the things we don't want to do right think about medical lingo dnr dnr no chest pounding no intubation blah blah blah but i like this framing better of okay what are the minimum set of requirements you need to have to still hold some delight in life and what do we need to get you there those are the steps we'll take there's some language around that peter by there's a movement to change dnr to and allow natural death to get away from the things we're not doing and the things that we're are doing to make that point in it interesting has that taken hold yet i don't know that it's taken hold there is an effort to try i like that to your point is a really if we have a sense of what's the goal moving towards yeah even if we have to be very flexible and allow our mind to change enroute that's just a much more deliberate path and it's also very helpful for those around us to know what to do versus just not to do what are the differences that you have both experienced in dealing with dying cancer patients between those that are quote unquote old and those that are young i mean of all the chronic diseases cancer obviously disproportionately strikes the young people in their 40s and 50s don't really have to worry about heart disease and neurologic disease for the most part but they're far from clear of cancer there's actually an article out recently that even suggests that the incidence of cancer is rising in young people so i'm curious as to what you've learned about living and dying through the lens of cancer in the tragic cases i'm just using this term sort of loosely where everybody agrees the 40 50 year old dying of cancer is tragic versus the part of life when someone is in their 80s and 90s and dies of cancer well one thing that leaps to mind in my experience with younger people i mean you can get very philosophic on say what is old and you know and i've seen some kids die which i mean that's a whole new level a whole new level of sorrow and senses of tragedy on some level for the parents very often very different level of engagement or awareness yes mentally but i have and i write actually the child the kid the young person i have seen some we want to be very careful to not be judging and grading deaths this is why the problem of good death is a really problematic construct and in terms of something instructive to learn from i've seen some younger people die so beautifully and adapt so remarkably to the reality that they're living it's just stunning why do you think that is i mean my sense is because you know you could say because they haven't yet been around on this planet long enough to develop such concrete notions of identity i am bj i am this i am not that expectations expectations when do you think that kicks in bj i think it's a spectrum at late teens early 20s i would say something like that is our sense of as we individuate and our identity sort of set up as something relatively independent compared to our earlier years i certainly feel different about myself now than i did when i was 19 but to your point i think as we said earlier dying is a natural thing we'll all do it hey what's the problem it's it's but the problem is hey that it's really hard if there's a problem around dying it's the social pressures or the expectations from ourselves or others that make us feel that we're doing it wrong or that there's something wrong with me for dying etc this is where a lot of the problem comes so a kid may just have a much more fluid sense of themselves in the world i think that's a big one they may not have developed haven't seen enough of the planet to attach so firmly to it perhaps but those are just guesses there is a theme and we have a colleague chris adrian who's a pediatric pad of care doc at middle would be interesting to talk to him but that's my experience with younger people now it's a very different conversation with their parents so that's one thing i mean they give space just to pause and note how complicated it is because the grief the sort of anticipatory grief of a dying person is very different than the anticipatory grief of the people that will go on to live without them and that's the space that we're trying to negotiate these decisions and make plans two very different developmental tasks overlaid in the experience of children of course this is not universal but in those experiences of children who are clear like i think i'm dying nobody is willing to talk to me about that looking around for another sober person to engage with them that's just kind of an amazing thought just a pause on that for a moment i've never really spent much time thinking about it because in pediatric surgery you saw some children who died but they were usually on a medical or pediatric service by that point i don't really understand what the medic cognition is of a dying child so a 10 year old child who's got cancer let's pick something like that they're aware that something's happening i suppose some certainly are deeply yeah more than often sometimes with a more direct shoot to kind of the truthfulness of what's happening then adults around them including the physicians and clinicians yeah i think there's an arc for our development where we know a lot as kids and we go out in the world and as adults and we take on we try on all these other outfits for size and do the things we're supposed to do and shoulds and stuff and then there's this can be this return to a sort of a playfulness and a lightness within old age that would have you thinking that our wisdom was never higher than when we were kids we just didn't get seduced into thinking that someone else outside of ourselves knew more than we did and started externalizing we could draw lots of fanciful narratives around that i mean the fluidity with which my three-year-old and six-year-old will sometimes they'll wake up and be like do you think nana died last night when are you gonna die there is a curiosity that they have without the attachment actually to like the deep meaning that we may as adults get into anticipating and then because we're anticipating feeling it they can kind of just like ask the questions will you be alive when i die mom will you be old they're just trying to figure it they don't get in their own way in the same way yeah maybe there's a way of putting them into project yeah yeah no totally it's not comfortable i want to go back to something you said a second ago you brought up anticipation of loss and death and then the actual event and the loss once that person is gone and obviously those two states exist for the surviving only one of those states exists for the dying so tell me about the experience for the person who's going to die what are the things that they express to you as their greatest fears how often is it again pain physical pain how often is it not existing how often is it leaving someone behind and their suffering and then similarly i'm curious as to what the anticipated versus realized experiences of the loved ones i mean i think for many people there's real fear about the physiologic experience of dying of pain and other symptoms and i think one of the beautiful parts of our work is in the nature of people being linked to palliative care hospice care there's some ability to comfort that that we are here we are watching those symptoms we're working with you so could we say that nobody in the year 2025 needs to actually suffer during death i mean is that to an extremist statement for example is there a pain that is so deep that it can't be reached by the most potent narcotic is there a shortness of breath that is so significant that it can't be offset and palliated by probably a narcotic as well like a well just from a sort of medication medication physiology land at that end of the conversation yes to your question i think we can say that no one in 2025 needs to die suffering as long as you include the potential for sedation to be part of that it may take so much narcotic to quell your pain or your shortness of breath yes that we are actively putting you to sleep so if you include what's called palliative sedation then i think that is a true statement i think i just want to make a quick note on the use of narcotics in this setting like narcotic is a police term it's a term of law enforcement and the medicines that are being used in this time are opioids and it's an important distinguishment because opioids are often one of the central medicines in managing the symptoms related to dying and related to serious illness at a certain point and people for good reason in 2025 in the setting of how opioids exist in our culture are scared i recently at a podcast with Sean Mackie who's a pain specialist and we talked a lot about opioids because on the one hand they are a very important part of the toolkit of a pain specialist they would be an even more important part of your toolkit and they have been the most widely abused class of drugs in the history of modern medicine those two statements can be simultaneously true absolutely it doesn't detract from the former yes right yes there is a fair amount of work opioids are being used to manage people's symptoms with serious illness we need to pause and ask the questions of like how do you feel about this medication being prescribed you have experience with it because everyone comes with some imprint around the meaning of these medicines and if we want to help people use the medicines correctly to get to that place where they might be as comfortable as we're able to get them like we got to peel back the layers on the relationship to the medicines being used is that a common phenomenon where people show up with a belief about this and is the belief that it sounds like a silly thing to say do people think it's cheating do people think there's some nobility in suffering through death certainly some people do some people feel that pain is redemptive that they don't want their experience blunted or muted or that they have such a commitment to a quote natural experience or they have been a person that never took pharmaceutical medicines or drugs anyway that this could be a real diversion from how they've understood or been comfortable in relationship to medicines and I would say often there's a need for conversation in this space at this point unless you're living with no access to media everybody has some touch point reaction and bias about these medicines and so maybe it's not a long conversation but it's a really important conversation and a lot people are worried about addiction people who are sober are wondering how this impacts their sobriety right that's a super interesting thing I'd never thought about so you take an individual who's been sober and they're wondering wait can you really give me a benzo if you give me fentanyl and morphine is that violating my sobriety how do you answer that question I answer that question usually with more questions around their sobriety what that experience has been like where they are with it now has it been important that there has been absolute abstinence it exists differently from different people questions that's sort of there I might put in the camp of identity are they telling you I mean I might say from where I sit peter there's no nobility in you suffering unnecessarily pain unnecessarily you as a sober person allowing me to prescribe you an opiate at this stage of your life to me personally as your physician poses no moral quandary to me at all but what about you you're the person who's living in these shoes and and if you tell us absolutely no opiates or absolute no benzos okay we will listen to you that may mean more pain than otherwise but that's your call so to bridge his points to be back to more questions and not putting it on the patient and even saying and by the way bob you can change your mind anytime let's live with this decision today and if you wake up tomorrow you want to change your mind yeah nothing's changed exactly but also I'm really I'm not you bridge I'm always knowing sort of the social clouds around some of these issues I will go out of my way to say you're not gonna get addicted to these medicines we're going to be using them judiciously a lot of people when they hear get the morphine if there's a phrase like hang the morphine sometimes is a euphemism for essentially euthanizing a patient it's not legal to do that anywhere we're not going to kill you we're going to use only as much medicine as this helps your symptoms okay so there's a lot of room to clarify how we would use these medicines what they mean and what they don't mean so even if someone doesn't ask me those things I usually find an excuse to say those kinds of things I think we have to step back to for a second because we're using suffering and pain yeah we're using suffering in a little bit of like a I would say not correct way because yeah someone can have all of their symptoms pretty well managed and feel pretty comfortable physiologically and have an extraordinary amount of suffering so to say in 2025 nobody needs to suffer at the end of life like I think that's impossible pain yeah for the most part we can say we will do everything we can to help you be as comfortable as possible like can we say we can do that perfectly no I mean I guess outside of the well no I think you're drawing one of the things you're saying bridge and I think it's really important is there's a difference between pain and suffering so help me with that a little bit more so pain we understand I think we understand shortness of breath and things of that nature yeah exactly so let's bracket that those can all be managed physiologically and more done so pharmacologically yeah now talk about the residual of suffering how much of this is sadness how much of this is grief tell me more about what the suffering is once you've addressed those receptor-bound physiologic things yeah I mean it's one of the reasons why precise nuance symptom management is so important because it's when the noise and the volume of the pain often is turned down that we get to learn about the stories someone is telling or the things that are replaying in their heads about not getting to see their kids grow up or not getting to finish that piece of work that felt so important to them or the ways in which they wish they hadn't taken something for granted when symptoms are allowed it is really hard to get into the places of suffering that are about incompleteness they're about what we won't get to do or what we won't get to do with our person or our people there's a whole pot spiritually existentially around faith and relationship to God potentially or what that is for you and if that has stayed whole in this experience of illness right so there's just so much turning the volume down on some of the physical stuff really can all open up the space to move your nauseous you're not going to tell me how you're feeling other than the nausea so the only thing going I mean in some ways like a lot of misconceptions around our work as we've said time and again one of them is that it's just about symptom management that we're symptomatologists essentially and that's really importantly wrong it's a sort of hyper reductive and as Bridget's saying in some ways the first thing to do is turn down the symptoms the degree possible so that the rest of you is present that's the starting line it's once we get you comfortable enough so you can think about anything but your pain or your nausea that's when the real work begins of getting to know you and evincing your fears and your hopes and your dreams and that's the stuff that's really the meaty stuff that we want to get to the end so comfort is a starting point in a way and just maybe to back up a little bit first so what do we mean when we say the word suffering for me pain is a stimulus there's safety to it tells us to stop doing what we're doing there's a sensation it's complicated the pain pathway is not a simple one there's not a pain pathway and it always involves emotion always involves cognitive stuff it's just a matter of degree but that degree is so when we tip into something where your pain or other symptoms are causing a threat to your identity a threat to your sense of self a threat to what you see as real in the world that's when we get into suffering so suffering is a mosaic of physical emotional spiritual existential the whole panoply of the human experience goes into suffering so someone may have inordinate pain but if they believe that that pain is redemptive is going to bring them closer to god or is burning off some bad karma they're not suffering they might be very uncomfortable extremely but they're not suffering it's not threatening their sense of self in the world and someone might have a very what looks to be a mild cause of pain but be suffering extraordinarily because that has undone their sense of being it's a really different notion it's not just the sort of physiological signaling cue does that make sense completely yeah so let's not mix those terms yeah i want to pivot a little bit to talk about how to pull all of this together right you guys have had good luck buddy decades of being at the bedside for experiences that i'm sure you look back upon and think that was really a wonderful experience that patient passed out of this world and their family escorted them out in the best way i can imagine and i'm sure you have seen the opposite i'm sure you have seen things that made you cry and made you think i weep for all parties involved what are some lessons we can take away from that what are i hate to call it do's and don'ts because that's such a stupid but you know what i mean what are some of the things that have in the process we'll come back and we'll talk about insights that you've learned from the dying because that's where i want to end it today but just from the process of the dying and their loved ones tell me things you've learned that people should know that increase the probability of it being as positive as it can be versus the opposite wow it's a toughie it's a toughie as we said this subject just really thwarts much objectivity or anything that smells reductive and in some ways that's the death that we are as practitioners are heading for is something that allows for while we talk about a body or a person in decline that's our medical bias towards a physiology in the bodily it's also very possible that people can have be having this incredible emotional and social and spiritual growth even as their body is in decline so part of it is our naming and overcoming the biases we're born into in this particular culture in this particular world one answer to your question is it's so hard to answer but for me for me these days the word honesty comes up for me a lot so the bullshit that we tell ourselves the partial truths that we tell ourselves the pieces of ourselves that we don't look at that we don't allow in because we're either ashamed of or whatever it is or blind spots or we've bitten this sort of autonomy independence thing so much that we don't let any social reflection in dying can be is this sort of great accounting it all has it's all coming out in the wash there so one thing that I see make a difference and head towards the do's and don'ts if each of us can take into our perhaps our responsibility but also our privilege to know ourselves over time and to dare to look and to see and to be true to ourselves my way of thinking if you ask me this question five years ago I probably said something different but that's my big takeaway these days is if you want to be ready to die well get real with yourself as sooner the better because one of the things you'll allow in is a richer life and one of the reasons why we would encourage people to think about death earlier in life is not just to avoid the defaults of a medical system that doesn't think about these things but you also allow in the idea that both your bigness and your smallness I'm one of a zillion people who's ever lived I'm a drop in the ocean but also allow in that the ocean would be different without my drop in it that work of placing yourself in the world and feeling in right size to it all requires a lot of dynamic honesty and that takes effort you need to dare to look at yourself and that to me is sort of a big do if you do that well so much of what we talked about today is it's not the problem of dying so much but the difficulties of uncertainty is so much of what we're guarding against or working with not so much death but living with uncertainty and that's something that we all do all the time so my answer to all of that is get real with yourself and be as honest as you can one moment to the next and allow yourself to move and change with reality that's a mouthful but that's as close as I can come to a do yeah sorry does that and no that's that that's actually really a profound one because on the one hand it seems so easy is maybe not the right word so self-evident but on the other hand it's so difficult and it's something that anybody with a modicum of introspection struggles with yeah and even when you think you've got it oh I now I know I am no as relational beings whatever's coming tomorrow might yank all sorts of other things out of you that you didn't know were there so the sense of self this identity thing is a biggie I guess this feels connected but the word for me when I think about those beautiful experiences or the ones where I walk away just feeling like not bad I'd be okay with that is about connection and what does that mean like whether you are the person who's dying like your ability to connect to self to the environment to the people around you if there are other people there if you're a person around supporting like can you be connected and in contact with what's happening when there's a lot of connection or connectivity in this time the circumstances matter but a lot of different circumstances a lot of different storylines can actually feel quite aliving or even nourishing or validating because it is being in touch with what is real how many patients are permitted that medically in other words isn't that in part constraint by their symptoms and the medications that are needed to again either sedate or control pain and then we talked earlier about delirium like what fraction of patients that you experience in the final days and weeks of life have the ability to be in that state that's a tricky question but I think many if the state is any level of connection to what's happening I'm not talking about moving towards totally conscious death or something I'm saying even in delirious states there can be moments where there's just like real connectivity maybe we don't understand cognitively totally what's happening but your kid is sitting there telling you stories about the things that were important to them and their experience of you or there's some sensation in your hand that's receiving input from your spouse or the light we just don't know what that experience is so if we work towards environments and a focus on promoting the idea of connection I guess I just really believe that that translates regardless of mental status or like mental clarity and I think you said something earlier most people three weeks there's probably delirium I don't know that I think that's true you're the expert not me yeah I don't think it's most I think days before you maybe days obviously so common but I think there's opportunity for connection the whole time especially if you include to yourself and other parts yourself then for sure and especially if also once you include inanimate objects and non-human things I mean I have some of the most connected experience of my life I've been with dogs so once you broaden the scope of what you can connect to I think Bridget's points are really well placed you may also allow a surprise and to feel connection to a perfect stranger has happened to me I felt like my life has been saved by strangers many times one way another say more I'm just despondent about especially earlier days in these shoes and just feeling so alone and so in pain or whatever it is or just tired but the kindness of a person walking by just a little bit of eye contact a little wink hey I see you you see me maybe they hold the door open but just a little connectivity and just the realization that it is an illusion to say you're alone it can feel very real but none of us is actually alone so as you head towards the cosmos you are there's room this comes up with psychedelic work there's room to feel connected to all sorts of things you can't name but you feel that connection how much have either of you followed the psilocybin work Roland Griffith's work the end of life stuff and what is your take on again notwithstanding the regulatory challenges of that what is your take on that literature and its efficacy I think anecdotally I have seen psychedelic experiences be incredibly helpful to folks that have run into a place in themselves where they've just hit a wall in their own imagination in their own mind as to what this experience is or what it can be that there's just this opening that can happen sometimes incredibly subtly that allows for just some slightly different insight not generated by the brain that you know so well or the parts of your brain that know so well and I think it can be amazing super helpful I mean I'm really in my own experience and those of people I've worked with it's easy to start feeling evangelical like we should just be putting psilocybin and other psychedelics in the water and let's be careful I mean I think we're gonna want to learn from reality as we begin to do more of this work and study let's be true to what we learn but on the whole these substances these medicines have been able to achieve in a session with a patient what months or years of talk therapy other things haven't accomplished and it's not necessarily about learning something in those experiences can be from my time it's more that I get past my thoughts and I get into this embodied felt thing it's not an epiphany it's just I feel the power of that epiphany or that idea in my bones in my flesh it's a different kind of knowing which then allows for a super sense of connectivity you can't be disconnected that's just you are connected and you feel that and the therapy of that also you get to see how silly our minds can be and you just learn that very simple bumper sticker truth of don't believe everything you think you come out of there with a new relationship to how you hold your thoughts and people get to that by other means through meditation through prayer through deep transcendent communal experiences it's accessible by way of other avenues so you've obviously spent a lot of time with people in by definition the final stage of their life what have you learned what have you learned that changes the way you live your life or the way you want to live your life I can say something again huge beautiful questions you asked Peter me but one is and maybe this is some relief for your audience I think many of us would say we'd love to be fearless and love to go into our death unafraid or live a life so conscious that we have no regrets and my patients have taught me to undo those strangleholds a little bit it's more the truth that I've learned from folks at the end is change your relationship to fear your relationship to regret the mark of living with no regrets there may be something for you in that but I'm not sure how if you're being really honest with yourself how possible that is the lesson has something to do with coming around to accepting everything that's in you including the gnarly stuff like regret and fear and even suffering are there certain regrets that people have shared with you more often than others the common thread and depending on sort of whether it's I regret working too much didn't tell my kids I love them that standard regret menu what they all seem to have in common is they regret not letting themselves feel or not letting themselves be true to what they actually felt something got in their shame or something else wedged in themselves and separated themselves from themselves or separated themselves from other people they love and the regret has something to do about artificially or accidentally putting a wedge between you and anything he could spend a lifetime running from fear and I've watched a lot of people come around to when they finally got the cue that fear was just a natural part of being in a body they became okay with fear they took away that secondary shaming of fear and then then fear became this it was sort of right size to them and it was defanged you know I've seen that play out a lot the same with regret the commonality back to your question has something to do with not being quite true to themselves or trying to keep something out of their experience and all the work they did and when they kind of realize that it's all got to go anyway welcome even pain to feel anything is wild and magical do people need to be really close to the end to typically come to that near inevitable realization or is that something people are realizing six months out where they can do something about it where they still have all their faculties and they can still mend a bridge or mend a relationship yeah absolutely that can happen anytime back to kids they're not gumming their own works up they can do that so yes we can do this we can learn to do this is another reason why we would invite this subject into our daily lives if you look out your window death and life are happening all the time you see it on your windshield it's all over the place if you can really be aware let these messages in then you can let the lessons in too towards reconciliation or why hold a grudge why would you ever cause suffering in another person knowingly or in yourself included etc so yeah buddhism was sort of founded around this question and to give you a life of practice around meditation to how do you hold your mind so that you don't suffer unnecessarily so that you can be okay with the fact of your death there are scholarship bodies of thought and just your own personal experience of living daily life if you let it in you can gain these lessons anytime along the way of life if i think about my own learning you can't i don't think really hang out in this space a lot and not really wrestle with the reality that we don't know when we're going to die which means that this is my life i've got two young kids so regular i'm kind of like okay this is my life this is my life just as like a management strategy but i think there's also like a tether to the reality that this moment is what i have it is not it may start to sound trait but it is not tomorrow is not promised to me 10 years is not promised to me and if that is true can i use that as this reminder this moment the way that i speak to you being tender when i do things out of my value system right staying really connected to now is the invitation that comes next to or has come for me in being so aware of mortality you do not have to be sick you do not have to be facing that of your life no one in your life has to be dying right now to just take pause and be like this is my life this moment and then the next do i remember that all the time absolutely not but it is a very available reminder yeah i intentionally stay connected to it i intentionally make it something my kids can be connected to because it's inarguable we can have three different takes on everything that we've said today but it is inarguable that we are always living in the reality that we don't know when we're going to die yeah amen sister and i think that gets back to sort of the do's and don'ts do have a relationship with mystery with not knowing do have a relationship with the present moment those are some pretty good do's what i'm saying is not light or easy it doesn't make me not afraid i feel very aware of how much i want to be alive and how long i hope my life is and also humbled by the fact that like what i have influence over and control over really inarguably is right now and i hear you not being ashamed of your fear and that's a difference i think a lot of people would be afraid and then what they're really experiencing is the shame of being fearful i'm very terrified every time i get on a plane yeah and i think also sort of dovetailing too is this word control comes up a lot it's a big one and i think in terms of if we're you know remotely dispense any advice the serenity prayer it comes up a lot one way or another i think a lot of your listeners will know this the ability to discern what you can control and focus some efforts there and let go of all the things you can't control and maybe in the middle identify that even though there are some huge things we can't control there is a lot we can influence those are different and that there's that spectrum between control influence and like surrender and how do we build our flexibility well and how do you learn to sit with i think that message of the serenity prayer often i hear people myself included in the past some friends take that wisdom of that message and say okay i'm just going to focus my attention on what i can control and then they have a lifetime of focusing their line of sight in one direction i think what we let go of is the other half of that message which is not i don't give a shit about it because you can't control it learn sit with all that you can't control practice not being in control that will serve you very well as you head to your death what about the role of forgiveness how often do you encounter the dying who are wrestling with needing the forgiveness of someone or needing to forgive someone it's a big theme it's written about a fair amount the things to kind of focus on saying out loud i love yous i forgive you please forgive me thank thank you these are tried and true messages that seem to cut across culture and stand up pretty well back to your specific question about forgiveness i don't know how to often i guess i would say more commonly what i see people needing to learn how to do is forgive themselves picking something in sort of common i see that a lot how do you encounter it being at odds with themselves when there is no boogeyman there is no they're just not comfortable with themselves they're at odds with themselves self-loathing self-critical even in the final weeks of life some we have a bias there's a bias all the people we've seen have had the benefit of hospice and out of care involved so they've been loved on they've been hurt there's an inborn bias to our experiences i don't know i don't know if i have like a good answer about the forgiveness piece i think i think it comes up i don't know that i think it comes up a lot i don't know yeah again i think that might be the bias of people that you've spent time with over time those things have gotten to there's no need for a deathbed i mean there's not a lot of truisms in this space that i generally vibe with and i'm pretty allergic to most of them but i will say that i do think there's something to like people die the way that they live those who lived in love die surrounded by love kind of thing yeah that or if you had a lot of people around you maybe there's going to be more people around you if you're a person that dug into your life and really investigated your mind and you did that relationally and you shared your reflections and like that's also more likely to happen when you're dying so if there's an experience you would like to happen if you're imagining into the future you're like i think dying in this way would be okay or more tolerable or nice or beautiful start doing it now you're worried about forgiveness investigate that now you want to feel more connected how do you do that you want to be in your body more how do you do that that's the best way to get there at the end is that you're building those muscles now i mean some people do 180s with a big diagnosis or the awareness that they're dying but mostly we lean on the places that we have hyperdeveloped because they're comforting because they're familiar in the face of this vast thing i mean that might be the single most important insight of them all which is we die how we lived and we will what's the expression we we rise to the level of our training in sports we talk about that at fatigue you rise to the level of your training and so we will default to our regular strategies the strategies that got us through life are probably the strategies that will get us through death and so what we should all be doing is imagining the death we want and begin practicing that at life and make that our scaffolding today i think about as good as advice as i can imagine especially if you throw in the caveat that along the way learn to deal with things when they don't go as planned so that you don't have this sense of failure at the end i mean one of the saddest things i think we see is people who feel like they're failing at dying so i don't want to set it up as an accomplishment per se or an achievement per se but your advice sounds really good to me like we can't control for the outcome with certainty but we can build the muscles and the capacities that are going to help us land in that place if you're a person who builds new coping skills or new ways of being in like high stress adversity like you'll probably do that then just keep going there you said it feels like a throwaway line when do we begin dying you don't become a different person when you're dying you're still going to be peter you're going to be bridge i'm a bj and that has already begun that active dying we never finish answering that question what goes in that the final day or two when the body's really shutting down so active dying has its own frame and we can revisit that any old time but everything up to that is some form of living so you can begin practicing this dying thing today well let's talk about that final thing what does that last 24 to 48 hours look like so the phrase we use is active dying to distinguish it from the rest of living dying thing and the body is actively shutting down so system by system you'll stop your kidneys will shut down you're not making as much urine in part because you stopped drinking probably a few days ago because your body couldn't handle the fluid so thanks to kidney shutting down you get a build up of toxic metabolites and you get a little intoxicated little dreamy that may be the the mechanism of your delirium so you're not eating you're not drinking as a general rule you're probably a little fuzzy or entirely asleep breathing the two biggies those can happen anywhere along the way but the ones that tell you you're really close are when you have modeling of the skin a sort of lacy bluish experience where your body's just not moving blood effectively and you'll see skin changes especially the extremities and breathing patterns change oftentimes you get apnoic so long periods with no breath at all you often hear something that's it's like a frightful phrase but the death rattle which often is sort of a gurgling sound with breathing that's just because your oral pharynx is no longer the reflexes are dying out so you're no longer moving fluids as they pull in the back of your throat which is an important note there if your reflexes are no longer functioning you're not likely feeling it so a death rattle sounds pretty gnarly but it's generally probably harder for the audience than the person dying but those are the things that are typically experienced in a body that's actively dying and that's only going to last a matter of days at most hours to a day or two i think the other thing that's happening is the experience for the people around that person and there's so much to say in that space but i do think having counseled a lot of people there's a feeling of preciousness we don't know when that last breath is going to come maybe we really want to be there maybe we feel like we can't but often for someone watching and waiting it can be really hard to stay connected to our own experience people won't get up and go to the bathroom because they don't want to miss that moment they don't need maybe their appetite is low anyways which you know is fine but it is a time to be thinking about really basic needs and basic comforts for everyone in the space because that influences the space and the environment for all and most people feel like this is the dying person's experience all of the focus is there we're watching every respiration we're even matching their breathing we're creating anxiety in our own bodies because of that and if we can invite attention to everyone's experience and give permission to like you need to take a walk go take a walk it may mean that they die when you're not in the room and maybe that's okay maybe they die in the one minute you're going to the bathroom for the first time in six hours it may just be that way that's a really really important point once you understand delirium and so you can contextualize what you're hearing from a loved one that point Bridget is pointing to is such an important one a lot of loving families keep these vigils and don't sleep don't do anything so that they can be there for the death thinking that that's the most that's the highest high that's what it means to be there when someone dies is in that exact moment when they take their last breath and so to Bridget's point this is a lived experience for everyone so you gotta sleep yes and I don't think any of us could tell you why this is but it is just a thing you talk to anyone who worked in hospice for a while it seems to be that a lot of people need to be alone for the final moments on the planet to really let go I can't tell you why but it is a thing so you going to the bathroom or taking a walk or stepping out of the room may be exactly the thing that that person needs to finally let go so the messages don't leave and therefore the person will never let go you just potentially can make it harder and harder for that person to actually finally let go so go to the bathroom take a walk kiss the person goodbye and drink some water and know that not only they may be gone when you come back but that may be exactly what they needed to finally let go it's a hard one for families to take in but it's just a thing well guys thank you very much for this discussion today very important very difficult discussion not one we want to have I imagine for you guys that's pretty common you go to parties nobody wants to ask you what you guys do well they have got a great story that they feel is relevant yeah but given how much of our time on this planet we spend heading towards the inevitability the one thing we will all be 100 successful at it's certainly more into discussion yeah amen brother and more and multiple discussions as we pointed out today you just it's slippery it's huge it's a windy inherently messy conversation so it's not just us struggling to articulate something as much as we are articulating the messy this inherent complexity of something yeah well thank you guys thank you thank you Peter thank you for listening to this week's episode of the drive head over to peteratea.com forward slash show notes if you want 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