Dr. BJ Miller: Advice for Living Life and Facing Death

[Music] [Music] [Music] hi dr. Miller how are you I'm doing all right how are you I am good I am good I am so grateful you're here I shared and over shared this event with everyone because I was so excited so I know we had booked the podcast a while back and I thought it would be great for everyone to go to see so much gratitude for you for being here yeah so um I thought it would be interesting to start today by talking about how when I was a teenager I had a tremendous fear of death and I read a lot of Sylvia Plath and I wore you know black combat boots and I loved her lady Lazarus poem like I eat men with air I have this red hair my hair red and I don't but like when I had to go to a funeral or I had to be presented with the idea of dying or death I was very like terrified of it and like a lot of people are of course but four years ago I was about 12 weeks sober so I'm four years sober now but just quit drinking and I get a call from my mom that my grandmother had taken a fall and she was in the hospital and the message was basically you know come now and my mom and I were with my grandmother as she exited life and I owe so much gratitude to her for giving me that gift and I know that sounds so weird but I learned so much sitting with her at the end of her life and I was so grateful that for that moment my mom she mentions it too and so then I saw your TED talk and I've been following you and I've read your book and I thought this is just something that no one talks about not enough and so I'm just honored that you're here and I have lots of notes I took I don't usually take this many notes I like to free flow but thank you let's start let's start quickly with your story and I know you've told it a million but just so people kind of know where you came from and why you decided to become a doctor yeah sure well first of all thank you and I really it's so important to be on this big subject yeah it is it stays abstract unless people are willing to get a little personal so I really I really appreciate you sharing your story a little bit there about your time with your grandmother and your own feelings about the whole subject so thank you so for me yeah I when I was a sophomore in college screwing around this was 1990 fall of 1990 I had just gotten back from Thanksgiving break and friends and I were just horsing around and we climbed up on top of a park commuter train that runs on campus it's just sitting there's after hours we climbed it like you climb a tree and I had a metal watch on in the powerless New Jersey and the power lines run over head above the Train excuse me and so when I got up on top of the Train and stood up I had a metal watch on and the electricity art to the watch and that was it so I got electrical burns lost my arm below the elbow where the watch was and then both legs below the knee and that was it it's basically a you know fluke freak kind of accident but I was 19 at the time and it was um I mean I guess we could talk about this for hours there were all sorts of things that flowed from that experience but or our conversation here what it really did among other things for me is it really woke me up to my own mortality and it really woke me up to just how connected we are and how mutable and changeable we are and how and how hard that can be but also how beautiful that can be so anyway it was much to say but that was my entree that took me into medicine and took me into this kind of work yeah because you were so close to death yeah that was a big piece of it yeah yeah and so you that happened to you and you walked around and said oh what why me why did this happen to me became a total victim right was that easy I mean what was your mindset like I mean well that's not the first go to know I mean it was there were there were you know it took years right I mean I there were and it's not linear you know some days I was just a basket case and and very and filled with self-pity and the next day I for whatever reason was feelings are strong and in good humor and helping other people around me be comfortable I don't know it was just all over the place but you could feel there was grief to it you know kind of coming to terms with what I had lost but thanks to a lot of support that I had I it wasn't all that hard really in retrospect at the time it was brutal but looking back there was a sweet arc to sort of grieving what I was losing and then becoming aware of all that I still had and the two go together very nicely and I needed to say I needed to be sad and needed to miss the things I was losing that was an important piece of it I didn't just jump right to some sort of Lebanese and oh I got this I needed roll around in the dirt I needed to be lost and I was for awhile but I had a lot of support around me people helping me see the shore and within a couple years I was much more aware of all that I still had versus what I had lost yeah yeah in your book so everyone the book is a beginner's guide to the end when you talk about your story I am I wrote down this quote that he wrote I needed people to see that I wasn't afraid so that I wouldn't be I learned not to constantly compare my new body to my old body or to other people's instead I could engage and I love this in the creative process of making my way through the day I got close enough to see something of death and come back from the ledge only to realize that it's in and around us all the time and now I see this truth in my patients looking to change and be themselves all at once and so I thought that was so beautiful because the creative process of making your way through the day I'm sure it truly did become a creative process it did it it did and it be quema creative process but it's probably more true to say Meredith's that it was revealed as always having been a creative process it's not like it's like what does this experience of course change the architecture of my body but that was actually a bit player in all this what it really did was tweak how I saw myself in the world and how I saw the world in general and how I how I became aware of change inevitably of change and in other words I was still looking at very much the same world in a lot of ways I was just now looking at it differently or with a bigger lens and so I do feel that all of us any of us is engaged in the creative act just making our way through day that it's filled with improvisation and all sorts of things we didn't plan for we don't call we don't give ourselves a credit of being creative for making our way through the day but I I just think it just genuinely is for all of us anybody that's such a great way to look at it it takes a lot of pressure off too it's instead of having this perfectionistic tendency it's like well how can I be creative today and yeah it's like an agility that comes with this like you know once you realize the ground once the ground is pulled out from underneath you you know you find your balance internally in some ways you find some balance through agility because things are moving all the time and what you wake up to is whether you're amputated or not the ground is moving underneath you all the time I mean it seems like what's going on with us right now in the world with kovat is exposing we may have thought the ground was solid underneath us but that's only ever been temporary or an illusion you know at best and it's just being revealed as [ __ ] it's always been so I think if you ask me yeah that's a really good point another part in your book that really struck me and I think it's in the first chapter is you you wrote there's nothing wrong with you for dying and I thought wow is that part of our thought process like oh I'm sorry I'm dying I'm sorry that this is happening to you through me you know I thought that was such an interesting interesting start because like we don't talk about it we don't talk about our plans for end-of-life I'm a recovering attorney as well so I did did a lot of a state or if I worked in a teeny tiny town and with a lot of with an aging population and we did a lot of estate work and so um but but no one talked about it they didn't talk about it until it was late or the planning needed to have been done 10 years ago and and so I do encourage anyone to get dr. Miller's book the beginner's guide to the end it was so comprehensive and so so fantastic but the one thing that really stuck out to me as you said only 10 to 20 percent of us died without some kind of warning yeah yeah I think so I just cut you off well yeah a couple of thoughts to tie in those two statements you know yeah I think it is really important I think it's at first I think it's the first sentence of the book that there's nothing wrong with you for dying because right we don't talk about it much and when we do it tends to be with pretty fight frightful terminology filled with warring analogies we're gonna go to battle and all this stuff and you know hey if that language suits you fine but very often because there's not a more robust and fuller conversation we just have this sort of gnarly battle mentality and it's a war that we all know we're gonna lose and so when we our language you know even if we don't feel even if we don't feel like anything's wrong with those for dying the world sir seems to be telling us that there is like we didn't we had negative thoughts or we didn't eat enough vegetables or we didn't you should have jogged more or whatever it is we simplify we do talk about it suggests that you're a loser for dying right you should come to illness or whatever it is so it's very hard to escape the the sort of vibe around that language and that's why I think it's so important to just to normalize this right out of the chutes and get try to get the shame out of picture of course there's sorrow sadness there's all sorts of stuff but we don't need to add shame to the mix we don't need to feel bad for feeling bad is the way I feel bad so anyway that's that's one I think there's like that's a huge there's a lot to say about that and why a book like this seems to be important because wow this is a fundamental essential part of being human we've sort of lost touch with that it's it's how necessary it is it's not a conversation we have and I started reading a lot of Stoicism in last year and one of the big tenants of stoicism is like you're gonna die yeah hello accept it and I thought the first time I listened to Ryan holiday on a podcast news talk it's like memento mori I think is the last term I thought oh I don't I don't like this I don't I don't like this conversation mortality but the more I think about it when when you step in - yeah we're we're gonna die and that's part of living and because I know I'm gonna die one day how can I be present today how can I be kinder and I know we were supposed to book we're supposed to talk on the podcast last month and my daughter wasn't feeling well because she was pre appendicitis and I had just texted you and I said hey I know this is a dumb thing it may be will never see schedule it but I gotta be with my girl today and you text me back and you're like hey you're doing the right thing and I'm like I figured you would understand that with that in mind that we are all going to experience this at some point one of the things that you really focus on is - is for us to be mindful of our goals of care toward the end and and I think this is a really important thing to discuss so touch on that yeah it is so so goals of care is a phrase that you might you might hear in medicine more and more it's sort of a it's it's not my phrase and other words just say if there is a thing especially in palliative medicine we refer to our goals of care it's sort of it's a it's it's a way to contextualize your life and so that you can make good decisions for yourself so it comes up in healthcare a lot around treatment decision invariably like like you had indicated a minute ago Meredith most of us are gonna die from chronic illness in other words we're gonna know we're gonna be given a diagnosis months or years in advance of it killing us so we're gonna have some sense of this of the read of how we'll die well in advance so another reason why it makes sense to have some to force some sort of relationship with your own death because you're gonna have the idea that I could back in the day the idea like have meet a lot of people who who really believe that the death that's coming for them is you know they're basically gonna be great and then they're gonna go to sleep and never wake up or they you know I hear this a lot they're gonna drop dead on the tennis court by doing what they live and then totally dead that doesn't really usually go that way so it begs the hence the need to have some sort of relationship with this thing that you got to live with this illness is chronic unfixable thing you got to live with so that that's an I think why that's and so important is that's the bulk of us are gonna have some experience with chronic illness so so given that trying to kill this just means it's something you can't fix it doesn't go away you gotta live with it so so how to live with it becomes a question how do you accommodate illness how do you accommodate death in your life so that these events don't feel like these foreign invaders robbing you of life they're part of you so so the goals of care is a way to to make sense of your situation to bring it back to what's important to you now so that you can make good decisions for yourself the norm in health care in medicine is you know it used to be that there weren't that many things to try and I think back in the day it made sense to just say well I'm gonna give I'll try anything the doctor offers and you know cuz it's two or three things and when those stop working then I'll accept death and then I'll get out put my affairs in order and that may have made sense at one point if it ever did but now there there's no shortage of things that your doctor can try so if you're waiting for that list to run out before you dare to accept that you're gonna die you're in don't don't do that because there's not good you're not gonna run out of things to try and at some point actually you're gonna be offered things to try that probably won't serve you so you have you have to be much more active in your care so how do you assert yourself in all this process well you you assert yourself by becoming known to your doctor and you know so I for me BJ what might be important for me is you know when it comes time you know I don't mind hospitals but I know I really don't want to die in a hospital you know I know I want to be around friends and family I know I want to be comfortable you know so those goals those goals become important around which to make decisions I know if that's my goal then I'm probably not gonna try that last-ditch treatment that's gonna have me in the hospital I know I'm probably not gonna choose to be on a ventilator when I'm dealing with multiple chronic illnesses and things like that so by asserting who you are you Meredith not generic person acts what you care about if you put that into the mix it has a way of organizing decisions that need to be made because if you don't do that you'll fall down these default pathways in medicine and the default pathways tend to be more gear more stuff intubation more machines and we can prop up a body practically indefinitely so you have to actively say no to that if that's not what you want yeah it totally does and when I listen to your TED talking you'd mentioned you there you had a chronic patient I guess she had ALS and she said she wanted to start smoking at the end and I thought and that was so I was of course when I was reading Sylvia Plath cigarettes and all that so but I quit smoking years ago and I've always said you know if I have a good life around 85 I'm gonna start drinking and smoking again you know and I thought about that you know when I was reading your book yeah you know at the end of life how do you want to be you know you want to feel the smoke in your lungs because you don't know how much longer you have with that and that's such a foreign concept for us to think about that long term what we would want but what a gift death can be if you think about it along the way and how many people are totally uncomfortable like a show of hands talking about this people like oh no anyone know y'all are also very very forward-thinking cuz you're my friends one of the things that you talk about too is the health care system was designed and I have a bunch of friends in medicine who say this to the healthcare system was designed with diseases not people at its core and that we asked too much of our hospitals in our health care yeah I mean medicine I love medicine it saved my life I love being a doctor blah blah blah but nothing's impossible and rekted my internship in Milwaukee the Medical College of Wisconsin the freighter hospital was one of the main hospitals we rotated through her tagline was where miracles happen every day and I hated that I mean I hated walking in a bill I can't I'm not a miracle worker I can apply some science but miracle is not my it's not my station and that kind of expectation that we can do anything you know it's just it's I get why I understand there's there's an up truth to it and I also understand the seduction of Hope that goes with it but we went we kick the can down the road and we defer the inevitable moment where actually there's certain things we can't do you know and we don't we just keep kicking that down the road and then we end up extending our pain and complicate our pain so but now I forgotten Meredith the Jess question was I I'm probably not I usually just talking was you know life kind of the Tony Robbins concept of life is happening for us not to us if we wait the long you know stretched the you know everyone's going to be healed and we don't accept that life is happening for us that we have some control over you know our wishes in the end we can do certain things I mean then it's happening to us and it becomes this rapid panic and toward the end nothing is taken care of your life semester houses the most your children are fighting and one of the amazing things in the book and here's me not having a question again is ways to to manage this toward the end or even now like I'm 40 I am a former lawyer he doesn't have a will in the state of Massachusetts you know things like that and I'm reading your book on obj part of part of accepting that we're going to die and and especially when we have an illness is it's getting your affairs in order and and one of your main points was don't leave a mess and I loved that chapter so how about that dr. Miller will you please talk about don't leave of us also link its back to somebody you know first of all let me just also get this a little bit clearer to like yes death is a part of life and that is a central theme here that is if we're interested in culture change in this country I think this is one of the reveals that you can tell the u.s. is not a very old country not a very developed society per se because of our attitude toward aging and death we treat it as this optional thing that happens if we don't try hard enough for something you know this piece of nature that we can push back on and I think what's waiting for us as a culture is if we dared to see death as part of life not as the antithesis of life then we'll stop being at war with ourselves with our nature and you don't have to love death it's just do you love life and if you love life that's a piece of it I mean that's the basic I'm not I'm not here to suggest that you need to just squeal with death and giggle within rows skip down this room in that if you do great I'm just saying you just have to it just is you can put an adjective to it if you want but it just is so that's that's why I think we need to deal with it and what's what when happily waiting for us on the other side of that of that daring move of dealing with mortality is you start seeing what it does for you it does teach you things and chief among those things is I think it proves the point that life is precious I mean for me this phrase like what what makes anything precious but that it ends you know how would you feel about life specialness if it just went on indefinitely I mean we have we have we have movies and books devoted to that it looks like vampires and zombies it's like not that's not it's not a happy state and so anyway that's just sort of backup of ways to kind of get into the ball get into the arena with the subject so that you can relate to it and deal with it so that that you can get around to these practical things to like at some point a well lived life at some point I'd see this with patients all the time and in myself - if you really want to die at some amount of peace you've got to begin somewhere along the way to see the power of life beyond yourself you know that your ego yourself is pet is an amazing thing it's important but don't confuse yourself with everything in other words if you start investing yourself if you start injecting your love or seeing yourself outside of yourself because yourself is gonna die that's the part we know the ego is gonna die but life's gonna go on there's life beyond yourself and you can feel part of that I mean I'd encourage you to think about that's another reason to ruminate on this just start to feel part of things beside yourself and so as your self Withers you're expanding into a universe around you and you can start thinking about life beyond yours but beyond your own life like a legacy like what do you leave behind what effect what residue do you leave behind what pile of mess you leave behind what beauty do you leave behind this becomes can be a really organizing question for yourself as you move through life and especially as you get towards the end because if you want to I think that's the key to immortality is actually seeing the seeing life outside of yourself and investing yourself and Mike outside yourself and one of the kind of things any of us can do for our loved ones is to it is to not leave a mess to you know do your darn will do your advance directive family aren't left guessing what you'd want so they can just be acting on your behalf lovingly and know that they're doing what you want them to do rather than guessing dealing with your stuck your stuff so that your loved ones grieving process isn't soaked up by endless estate sales and paperwork and all sorts of craziness so there can be like spiritual almost a cleansing to cleaning cleaning your emotional life up and your attic out so that when you die you leave a pretty sweet clean sorrow not-not-not layered with shellac with guilt and regret and second out and recrimination etc it does it does my husband said for a long time when we when we first got married he's like when I die I want to have a Viking funeral I want to be pushed out into the water and burned I was like you're gonna have to put that one in a will anyone that's lost someone and you have to go clean up you know you know what that is and but it is it is a sort of presence that kind of all goes back to that presence if we accept that we're gonna have to die one day then we need to be present and clean up our mess and decide is this important is this pile of junk important to me you know and then you have to you have to kind of go down that that path of asking yourself what is important to me where what matters am I yeah and it's a constant as a question you don't ask once or twice it's you know it's a constant you're constantly trimming your sails I mean I always love this with when I work with patients and families you can often feel people being kind of by a diagnosis and the effects of treatments and stuff can kind of be pulling people down roads that they don't want to be on this sense of self goes away their identity is all was all was all screwed up and messed up and often times you know we love conviction I love meeting someone who knows who they are and they're staying strong and they're that way no matter what there's something very charming about that but you know what I'm also especially moved by people who have roped in a change into their makeup that they aren't static that they are affected by life I that's one of my new favorite words in last year's affected I want like effect means mood to affect means to obviously to have changed something to alter something to invest yourself in something and what an honor it is to be affected you know if I'm having a conversation with you Meredith and I'm affected by that and what a beautiful exchange that is there's something very moving by about being moved and that means not being static so as you deal with the threats to your identity that illness can prove that can consume superimpose on you if you can find a way to dance with that and move with that and be affected that I think is a very adaptive response and it takes you down very beautiful pathways and illness can lead you to see things that you never would have seen before if you go with it this way so I don't know why I went down that launch down that pathway but I do think there's something really really beautiful to being changed to being affected I wanted to see that I can't remember why well you know it's the human condition when we make connections with people when people are showing us their true selves how they really feel and and someone that can say hey this is this is impacting this is affecting me that allows us to say you know what this is impacting me too and here's how I feel I mean if you're the one dying and you give people permission to feel a certain however they feel about it and and you because you're able to feel it's just the whole the whole connection that we may yes in an exchange like we're seeing each other your life is changing because we're changing and vice versa you know then there's such a dynamic thing and it also begs it makes the point that yeah we're one person your eyes is one person right you because they were just a drop in the button the ocean Baba but you know it wouldn't be the same motion without your little drop there's something you right-sizing about this like yes I'm teeny and I'm potent yes yes I'm itty-bitty but the world would be different without me we're like the vanilla extract such an exotic be people think vanilla is like bland but anyway yeah there's something about being in the flow of life and I guess that's another point I wanted to kind of make here is if you like have these conversations Meredith you roll around with this in a daily way you know routinely those changes that we're describing are also little deaths you know like you can practice your dying a little bit like your identity shifts like I felt one way last week but that way died in a way now I feel this way and you if you can kind of roll with change in a way you're rolling with death you're you are practicing loss all the time you're trimming your sails all the time and you're seeing loss and gain in the same equation all day every day you walk down the street you see death happening by the bugs you step on it or leaf you see falling from the tree or whatever it is it's just all around you and in you and it doesn't feel like this exotic foreign invading force and therefore when it does come your time you've really been you've been rehearsing this in a way yeah yeah so if anyone has any questions feel free to put your little glue zoom hand up you can do it by going to I think manage participants and you can raise your hand and I'll call on you and we can you can ask a question or and feel free to type it in the chat this is a great opportunity guys take advantage of it and practice your public speaking skills I think one thing that we could segue from from this is legacy the concept of legacy you kind of mate it's like a cringe word what is my legacy because I'm so important but there is an idea that you know what are we going to leave and I think your book that's an excellent job kind of putting legacy in perspective and then at the end of the chapter on it you mentioned something like no matter if you didn't write a book or you didn't write anything down or send a letter you were still here you still matter and so maybe we can talk about the concept of what leave behind or legacy and what that what can we do about that in this moment yeah well any questions I'm yeah you just tell me when there's a question huh yeah I will I will okay but yeah there's a question take a question all right and Jane Bennett you are unmuted I think good morning and thank you so much for your time my question goes back to what you married a few had said you know when I get older I'm gonna smoke again or that patient did and I'm thinking about something happening with my grandfather who's an assisted-living now and my mother and her sister are arguing about the types of food you should be ate and how many pieces of glass that you should have for breakfast and is there a tactful way to address that I guess because I kind of wanted to say you know when your doctor told you let him eat all the cheeseburgers he wants how can I say that in a more tactful and loving way and I'm sorry did you say this was your father or your grandfather it's my grandfather it's my mother and her sister that arguing about it and you know I understand where they're coming from they want one of them wants to hold on as long as possible and the others kind of has my mindset well you just named if something really really important which is oftentimes what you'll see and families around someone who's doing the dying is you know family dynamics come out here and what you might be experiencing and your mother and her sister is their own grief so you sort of intimate it as much it's I think it's an important lens so that you know how to hear each other well because sometimes it can get pretty intense around the bedside and families can sometimes sir get at each other rather than come together and I guess I just name that is you grief will come out in all sorts of ways so maybe it's it's just it's you're so wise to have compassion for your mother and her sister as they deal with the impending death of their father rather than chasing their argument around just seeing it as their there they're suffering so I don't know if that's even true in this case but I just needed as a generic comments so that so we know how to read the signals at the bedside and not get too swept up so anyway that's one point the second point would be you know is your grandfather Abe is he communicative at this point oh yes very much so and he I think he just stopped talking because of the two of them are talking so much he just sort of sit back and accept whoever wins that argument in a loving way absolutely oh yeah he loves him both very much pistol' calls all of us pumpkin so it yeah I mean everybody's coming from a loving place yeah I think my motivation is probably trying to use that tension yeah well so ideally so if your grandfather you know ideally it gets back to what Meredith the brought up the sort of goals of care and if if the patient if your grandfather's able to say hey guys you know what they've been thinking about this and these are my final days who knows how long I have but you know as I look and this is my life now and and I realize here's what's important to me you know what when it comes down to it I'd really just love to watch the 49ers or the Cubs or whatever and as much sausage as I want you know or whatever it is I mean you know ideally it'd be coming from your grandfather because he's the boss here and if he says here's what's important to me and now and here's what's not so important to me now then you've got your marching orders and then everyone can show their devotion by honoring his wishes so ideally he's the one making making these kinds of statements and giving us direction do you think that's a possible could you imagine a conversation where with enough questioning he might answer it and say well gosh now that you asked me what's so important me now here's my answer what do you answer that question absolutely now that you say that it would be really easy to sit grab his hand and say grandpa what do you want I don't I think he just hasn't been asked because I I've been you would answer that question that's a great great suggestion well and it may sometimes and sometimes it really is kind of that easy it's amazing just simply just asking and and I will just say one more thing you know in that conversation it could be very helpful to contextualize it so hey grab what's important to you that you maybe get an answer but you say you know if there's a way to be talking about his health and if the doctor has sort of let him know if there's a prognosis moment or if there's a treatment decision moment you know those can be really times to sort of circle the wagons sit down to have a big conversation say here's a couple decision now we've got to think these things through grandpa how do you want to approach this what's important now how do you want to make this decision so in other words contextualizing the conversation can be very helpful and leave just very naturally into the answers that I think you're looking for but it sounds like you guys will find your way is there anything more you want to talk at about that situation though no thank you that was that was fantastic recommendations I really appreciate it my pleasure yeah my best year family awesome okay Ashley I'm going to unmute you go ahead maybe I should actually unmute you why is it not working alright hold on let me try Lorraine and see if I can unmute you okay Lorraine I think you're unmuted I am okay I really appreciate this conversation when my father passed I had a very powerful moment were both of us acknowledge that he was dying ignoring that could you comment on that important to the importance of acknowledging the fact that someone is dying to them mm well yeah thank you and did I did did you say that some that that that was acknowledged is that how it played out or was it was his death not acknowledged as was there sort of a charade around simply acknowledge that with with my father yeah it was acknowledged you're kind of breaking up blurring yeah okay yeah I think it's really really generally important so let me say a few things here Lorraine and and if I if I if I say anything that doesn't quite fit your situation forgive me but I'm just going to speak in sort of generality so there's a great book called the death of Ivan Illich and I can't remember the author's name right now but anyway it's about sometimes the pain you know some of us I think many of us maybe all of us at some point we just want to be seen you know the phrase bearing witness and to be seen for all that we are even if we're falling apart even if we're dying or whatever it is just to be seen in truth that's a very powerful feeling to be seen and not judged to to is is powerful and sometimes when we're trying to protect the dying person at a sick person we may watch what we say our hush tones or speaking half-truths that that can end up hurting the person who's actually doing the dying because they know something's up most people I've ever worked with even their gut even if they've never been told their diagnosis somewhere inside of them knows that they're that they're dying very often leo tolstoy Thank You Monica I see that comment on the bottom yes it's Tolstoy book the death of Ivan Illich but back to the Lorraine's question or the point here is it can be a powerfully it can be a powerful source of despair when you know there's a truth you're sitting in some truth and the people you love around you are ignoring that truth like you're not sharing reality and that can feel it's its own sense of tension in its own sense of pain so for the most part most of us you were doing each other an honor and a service by acknowledging the full reality that we're dealing with now that can be hard to do there are ways to do that but I also need a caveat here Lorraine and for everybody else there are a cultural and personal overlays here so in some cultures the person who is doing the dying they're not told that they're dying and for ceremonial reasons and symbolic reasons and that's that is the cultural tradition and that may be so in other words that sort of that blindness may be desired may be culturally appropriate so that's something to acknowledge here there is no right or wrong way so when I meet families that are suggesting don't tell mom or dad that he or she is dying you know what I weigh too handle that as an American physician with our ethos around autonomy autonomy is to say okay well I'm not gonna force that diagnosis on your love bone on your mom your dad but I am gonna ask them what they want to know so if I say hey mrs. Jones you know this is complicated what's going on with you right now do you want me good it'd be helpful for me to try to talk to you about all that's happening with your life and your body right now or would you just as soon I talked with your family and I've given the patient the power to tell me what they need so if they say no doc I want to know everything then it's my job to bring the family together and broker a conversation around the truth but variants that they usually want to know say but most often my experiences most often is they know and most often they want the family and people around them to share in that reality so they're not propping up some charade right right but it's not always the case it is usually the case yeah rambled a little bit but Laurie and I have responded to your point a little bit yeah that was great and you made me think of something on the the new movie with Tom Hanks a beautiful day in the neighborhood about mr. Rogers oh yeah yeah I don't know if you've seen it but there's a scene where one of the also good where one of people are dying and mr. Rogers the Tom Hanks character goes over and whispers to him and there's a like a nodding and acknowledgement and then the dying man's son says what did you say to him and mr. Rogers says I asked him to pray for me because no one is closer to God than a man going through that and it was just this moment where he acknowledged this man is dying and you know it's just and it made you feel like oh my gosh yeah a respect like we see you we see you and what you're going through and we're here we're here for you you're right we're not pretending it's something else we're septic even though we don't understand it that is so much honor and respect and love and that it's hard but it's beautiful yeah yeah okay actually I'm gonna try and unmute you one more time and if not maybe you could type your question yeah for some reason oh wait there we go yeah okay so you kind of answered my first part of my question already so I'm an only child growing up death was not something we talked about at all my parents were older and then my dad suddenly passed away six years ago my mom lost her mind and I was the one that like handled everything they had nothing set up they had no wills anything like that so now every time I try and talk to my mom about it like hey let's not do this again when something happens to you ultimately she gets really closed off doesn't want to talk about it I've tried being pushy I've tried just kind of dropping it into conversations it never works so I mean part of it was about like how do you handle something like that and then on the other side like I have two small children that are two and four and I don't want them to be in the same position down the road and I feel like at two and four obviously it's not a conversation you sit down and have with them but like how do you suggest making it so that conversation is easier down the road if that makes sense with the kids or with your mom or both yes well okay so let's see so mom you know hard to know obviously I don't know your mom and there could be so many things going on here it may be that some some folks accept it that it's almost almost like a tradition that that that the way we showed that we family show our love each other is by by waiting into a hard confused place and like it maybe maybe I'm not suggesting this as a situation with your mom but sometimes it's sort of like that pattern plays itself out the dying person is not talking about it the family has to do a lot of gymnastics around that person to try to figure that out and then some for some families that is a sort of a version of love that is passed on but that is the tradition in a way and family members can show their love by just wading into the confusion and being lost together I'm not saying I'm such what she's doing or that's a great idea but I get the feeling sometimes that that is almost what feels like a thought an unthinking position often times is a thinking position and that's one point another point is you know your mom may very often people take a little bite at a time with this you know they don't go right to an accepting place you know your efforts to try to talk with her about it probably our landing somewhere and over time they may have their impact it may be the hundredth time that you say hey mom you know have you thought about X Y or Z then one day she might just say all of a sudden have a an answer waiting for you then you might just be completely shocked y on the hundredth time that I asked did you finally answer the question sometimes it just you just need to chip away so I would just continue to bring it up in this loving thoughtful way and also for your own sense of sanity that you don't overly personalize her response so she may not be able to go there just yet and it doesn't have anything to do with her not hearing you or not loving you at cetera so offering it up mom I'd love to talk about this if you're ready if not we'll keep on going you know Sunday she might be ready maybe maybe then another point here is very often communication is indirect so she may not sit down say honey here's what's important to me X Y & Z when it's my time I wanted to do bah blah blah she may not be that directive but maybe she'll lob in maybe you can talk to her about what she loves about life and you know if we talk about what you love about life mom that that's an indirect way of saying what they're afraid to lose or what they're sad what their what their what the sadness that will be in the counterpoint so if she says gosh I just love being with family I just love being at home that's a little bit of an advanced directive so that means that when it comes time maybe she wants to be at home maybe that means hospice not the ICU and things like that so sometimes you can have an indirect version as conversations through talking about what she loves that gives you a sense of how to decisions on our behalf going forward because you'll know it's important to her so those are some generic kind of thongs and then lastly the kids you know and it may be sometimes up a certain generation older folks I've seen who are just not they're never gonna talk about their own wishes they see it as self-absorbed you know it's almost like they see that as selfish like they but the second you say hey mom you'll be doing the grandkids such a favor if you you know if you let us know what's important to you or whatever it is if you'd make it clear to mom that she's doing your you and your grandkids and your kids a favor then all of a sudden things can change sometimes people won't do it for themselves but if they know preparing for their end is a kindness to the family they'll do it in a hot second so those are some generic thoughts then sorry for the kids you know kids are amazing they're so resilient as a rule death is not so foreign to kids as we I think we imagine so very often with kids you just let it depends where they are their developmental art but as a rule you follow their lead if they're asking questions and showing curiosity then you go with it you know if you're trying to take them into a hospital of someone's bedside and they're actively repulsed and not wanting to go then you know don't force them but you can usually read kids in real time and follow their lead they'll tell you what they're ready for and I would say in general we underestimate kids ability to deal with that yeah I'll add to that too ma'am my grandfather passed away last year and my son he's 12 we were at the viewing and he said I really want to poppy was my grandmother he's like I really want to touch him and I was like well let's go touch him and despite my great growth and death and and being better with it I'm still not real cool and I'm touching the dead and but I thought well my son's okay with this and he wants to go touch poppy so you know and it's so interesting how when you're with a child you grow I mean you just grow and so we didn't we went and we held his Papi's hand and he said he feels like our lizard and I said yes he sort of does and it was this you know this moment but taking a child's lead is a really easy way to to kind of grow yourself I notice do I'm gonna meet you okay you're good hi I just wanted to say thank you I'm looking at the read back here yes we do suck at death and dying the United States for sure but I have to say that this conversation has given me great comfort and I did listen to your TED talk prior to the call this morning my mom passed in November so thank you you've given me comfort that I gave her a beautiful job oh thank you thank you so much it's so beautiful to hear that you're such a dick she is such a dear person no but she was in she had Alzheimer's and she suffered a fall last May and it was kind of a slippery slope and it was interesting when you were talking to the other participants about communication and she gave us a lot of signals and it was the other thing that I found interesting about this is I felt like I was the person that didn't want my mom to know that she was dying and my sister was a little more forthright in that communication with her and so my mom was a runner and towards the end of the end of the end I said to her I said mom this is your final finish line and we will be there with you if you want us to be and if you don't we will honor that too and she waited she was there was a period of time or she was with a hospice volunteer my sister and I had some things to do when we came back and my sister I was holding her hand my sister was at her head my niece was in the room the hospice volunteer was their favorite nurse was there and we had some really lovely music going and she you know sprinted across that finish line with a whole bunch of love around her and I really loved in your TED talk in your hospice that you sprinkle flowers I thought it was really beautiful after she passed we opened the window to kind of let her spirit go so I just want to say thank you this is a really sticky sticky topic a lot of people and I really look forward to reading your books so thank you for taking the time today oh thank you for sharing that story that is so beautiful I mean hey tears are totally welcome I mean guy I love tears they're so powerful and useful I mean so let them let them fly you know and that's and what a way to honor your mama whatever it is is so beautiful I mean so thank you so much for sharing it and and thanks for moving making a point that that beauty is not opposed to pain that tears are not a post joy they go together you know and thanks for living that for us and so it's just gorgeous thank you what a lucky woman she was yeah sweet okay I'm Tanya you are unmuted hey everyone I just wanted to really say thank you I really appreciate that we're talking about this more when I you know how teenagers think they're so invincible well when I started college at the age of 17 there was a school shooting and that was the first sort of that was the first time that I even though I had seen grandparents passed away it was the first time I realized I could die and that was that was a huge game-changer and ever since I've always made it very clear you know sorry so I totally lost my train of thought but yeah I've always I've always you know let my family and friends know that I wish to be an organ donor that I would prefer to die at home that I don't want extensive last resort sort of measures taken if my quality of life would greatly impacted it just made me realize that even though that was a very spontaneous event that death is a thing and it's part of life and I do want my friends and family to know my wishes at the end and this isn't something we talk about a lot and so I'm very grateful to be here and thank you so much for bringing more awareness to this Thank You Tanya thank you and I you know you make the point here I wish you and I had both had really hard reasons to make death real in our own lives right we had something that happened that was really you know regrettable in so many ways but I also I don't know that I would have as a young person I don't know that I would have dared to wrap my head around death as soon as I did without that experience and I don't know about you Tanya it's hard to wish for our school shooting in the backdrop but it's also it's hard to escape that for especially for us young folks we you know you need an excuse to kind of really wake up to this I mean yeah we know we all die sure yeah yeah in the back but to really really internalize it and to feel it in our bones is a very powerful force in some way I don't know how to I don't know what to do with this wish because it ends up feeling a little sadistic but I especially when I work with young students who are going to the health professions I actively want them to have an experience like you had Tanya or like I had to make the abstract a little bit more real because it's such a poignant place to get to it's a hard hard to get to but once you're there it's the life affirming and so sweet and so beautiful in such a connecting force I just so I wish the world had at a young age had some something go wrong to make them and wake up in this way but not wrong enough to hurt you you know it's wish for but I'm just grateful that you and I both have these experiences and thanks for sharing definitely thank you all right well I want to be respectful of your time I think we probably have time for for one more quick one I'm not sure I'm your name it's HP notebooks iPad here I needed that's me I'm Lori Larson and I look like the comments that I wanted to make was that I've had I've had a lot of experience with deaths I've lost two children and a nephew and my mother and my father of course but I was quite young when that happened but you know I just wish people would be a little bit more forward about it and you know you don't pass there's no Rainbow Bridge you die man and you know it's it's actually you know the fact that people can't talk about it actually makes it harder because you you you can't you know they want they don't know what to say so they say the wrong thing and and they're trying you know I get that but but people don't talk about it enough to know how to talk about it in a comforting helpful way and I find that's kind of frustrating and and you know I also feel like one of the one of the things that you said this is this one quick little comment I I think that as a doctor you or doctors in general they they all the patient the honesty to help them deal with their deaths and not necessarily to defer to their family's wishes because if their family doesn't want them to know about it that's too bad it's their illness in their body and you know there's so much denial out there I mean so many people are so uncomfortable with this they don't want to help Mom and Dad died they don't want to deal with mom and dad dying so they just say well we'll just not talk about it good person like you said a person knows exactly what's going on with their body usually I just I hope that I mean I'm so glad about this conversation because it's just one conversation but it's one that we need to have and I hope people can all take it to their other conversations that they have in there right then and I help others understand that it's something that you can just talk about yeah thank you Lord think that's so beautiful thank you I mean it's a perfect of summary comment I think to our conversation and look we are having this conversation they are happening and denial is a very real thing out there it's a powerful thing too but there are also some counter points Meredith you hosting this conversation you all participating in it and you're right Laurie we can all go out in the world and do a little differently and be part of this change I think the basic change of your pointing to you and we're all pointing to one way or another and this is part of life this is not the antithesis of life this is not against life this is life and so therefore let's deal with it together and let's not make it harder than it needs to be then I think you know this is how we're gonna do it yeah well this is a culture change we as patients as the public pushing this conversation and pushing our doctors to do a little differently and medical education needs to needs to shift itself to to be prepared to have these conversations so we're not kicking the can down the road so anyway Laurie amen I'm with it all the way and I think this this very conversation is is a counterpoint to the denial that we're all aware up to attack well I want to be respectful of your time thank you so very much everyone dr. Miller's book is a beginner's guide to the end it is fantastic I've read it it's it's wonderful a way we can continue this conversation is once we post once I post up this podcast and the YouTube videos share it this is how we get conversations going I mean there's a reason dr. Miller's TED talk has 10 million views like this is how things get talked about and seen so thank you all for being here and dr. Miller thank you for your work and everything you do thank you guys such a pleasure meeting y'all thank you very much take care [Music] [Music] [Music] [Music]

Channel: Meredith Atwood and The Same 24 Hours Podcast

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Id: 50P4bzY13Oc

Length: 60min 19sec (3619 seconds)

Published: Wed Apr 08 2020