BJ Miller & Shoshana Berger - A Beginners Guide to the End

[Music] welcome to everybody a lot of familiar faces and it's great to see new people you are now part of this cult that we don't call me we're it's a benign and very good cold you just heard yeah so we've been doing as Oran noted a lot of programs for the through the years and this one was one that a few of us cooked up as a way to have these kind of gatherings and have presentations on a wide variety of things a lot of them are related to calm will work we do environmental things and healthcare of various kinds and some of them are just philosophical and we have had artists and musicians and all kinds of things and it's really great and really fun one of the themes that's come up partly by design and partly by default in these new school talks and they are most of them at least for quite some years now are archived in podcasts and video casts on the commonweal website you can find them and there's a list of themes you can click on one of them was end-of-life issues and we've had a lot of great presentations on that and this is something that I talked about doing when we first started doing these talks here and it's a it's interesting to observe the change in time and our culture on this because when I landed in San Francisco to finish training you see in the 80s there was the explosion of the HIV epidemic and a lot of mortality death and dying going on and it was very clear to me that this was something that people hadn't talked about that much even within medicine but also just in the greater culture and so the way one way you could kind of biopsy that or look at it and see is that if you went to a bookstore and look for books on death and dying there was no section on it there were a couple of books that were in psychology usually like Elisabeth kubler-ross one or two others now you'll find whole sections and all kinds of discussions out there which i think is a cool thing and you know there's all sorts of reasons for that I suppose one of them is the demographics of a population age particularly those that I'm a part of so it's one of these okay boomer things right you know let's talk about death you know but it has a great side effect of making people look at what's important in life thirty or so years ago there was a huge survey of Americans Gallup poll and they asked what are you most afraid of in the top three things that came up were number one public speaking mm-hmm number two was death and number three was talking about death so here we are and the speakers we have here today have different perspectives that they came upon to do this great project we might call it that is embodied in the book downstairs a beginner's guide to the end practical advice for living life and facing death so when I was reading this being in a an okay boomer it reminded me of a book I hadn't thought of in a long time and that was when I was a kid and a lot of you I believe too and I was here in California coast almost everybody drove Volkswagens eww bugs indeed OB vans you could buy him for three four or five hundred dollars and drive him into the ground which if you wanted to fix them there was this one book and it was written by a guy named John Muir and he was in fact the descendant distant relative of the John Muir but this was the guy who was an engineer trained at Berkeley dropped out and lived in New Mexico and he wrote a book called how to keep your Volkswagen alive a complete guide for the complete idiot and what it was was a very practical knowledgeable book that went chapter by chapter on all the kind of issues you'd face in this is really troublesome little cars but also laced in with a lot of philosophy and stories and jokes and even kind of cool little drawings so I'm reading through this book and I'm thinking who's this it's kind of like the John Muir book for the end of life you know and it really yeah so you look it up you'll see it was it's still in print 19th edition there's been millions now I rebuild a Volkswagen van using that book you know and it would say things like well if the car is too hot to touch go sit on the corner and smoke a joint and come back this one doesn't say that but it's close so what I want to start with with you guys is two of you from different backgrounds and how you got into not just writing this book we talked about that but BJ story is well known but I want to know I know some of you haven't heard it in a briefest form like you did in the book what brought you to doing a book like this and getting into this field and go in whatever order you in yes sir not so sure um sure I guess mmm we could start a couple different places I mean personally I got involved in medicine not because of any love of medicine at all but because of I had benefited from it been a patient and I got to see how amazing medicine was and how just unbelievably ridiculously horrible it was to so both something to be inspired by and something to save my life as well as something to go participate in shifting but that was a way in healthcare and that professionally landed me pretty quickly into this field of palliative care because I was very interested in subjectivity I was very interested in the limits of control these things which are sort of against the point in the rest of healthcare I so that took me in a pound of care and that took me into hospice work so that's kind of one angle in another angle in was really my experience so I had electrical burns in college that's what landed me as a patient and in that experience being in a burn unit for a few months you have a lot of thoughts and one moved me towards studying art and I went back and studied art back to college and studied art it's a funny feeling that would be very relevant for this new body so let's think creatively about it and there's experience there I was looking at old statues on Greek statues missing body parts and I remember distinct I well I'm sitting here looking at these sculptures and we're not talking about the parts that fell off a thousand years ago something else we're still admiring these sculptures missing parts and all and they weren't incomplete sculptures and that was a very therapeutic moment for me and there was another moment just like that setting modern modern architecture where they started to celebrate the material not covered up like Louis Sullivan started to reveal the material to celebrate the material and that changed my perspective to my my prosthetic legs these weren't simulations of something I lost these were something in of themselves beautiful in their own right sir you know powerful or useful or something in their own right and I stopped comparing myself to the way I used to be I started getting into the way I was and there's that kind of thinking that led me to deal with things all the things I can't change like the facts of death it's that sort of attitude that brought me here and then one lesson to say was then I was working with ideal when I was with his end hospice project and we're working together was idea of the design firm a bunch of different ways but that's what that's where I got to meet Shoshana and that was a really exciting time for me because here is we were trying to pry this subject out of the medical world and here was this amazing place filled with very creative thoughtful people asking for it works as the rest of time you know we present this material a lot of people and they run away from it and these guys are actively getting into it so that was sort of the set up those of how things that came to be and then Shoshanna one day we're there so I guess it was a lot to say to her in the story but I just will say for now that the show she came up to me in one point we all realize that there's a need for some basic fundamental material in one place that you can get a piece and yell all over the place but there was so much suffering going on in the world around just a basic lack of information never mind pain and sorrows or other kinds this is unnecessary because of inaccessible information so that's so chef came up and said hey let's write a book together and I said okay because they knew there's a need for a book and I guess what all this has circled back to is also particularly Shoshanna asking it felt really important to have a clinician but and a non clinician a patient a caregiver you know it helped me felt very important to have a couple different angles and also show she knows how to do things like write which I know so and we've had a lot of experiences together just as people marinating on a subject and being vulnerable together so anyway it felt really right and I said immediately yes yay for me so yes so when I met BJ I was about three months out of having cared for my dad who had dementia for about five years and it was a very very hard and attenuated death watching someone lose their identity and I just started working at I do too and so this whole new world design had flowered for me thinking of not designed like a shiny object that makes us sound when you drop but how do we design experiences how do we design our lives and so all there was this great confluence at this moment when I met BJ of all of these things swirling in my head and I love that you brought up this guide about driving your Volkswagen Fox wagons for idiots basically because you know we thought maybe we should call this book death for dummies because that's kind of how I felt being a caregiver to my father I kind of felt like a big dummy I felt like the whole experience was profoundly undesigned I had no idea what I was doing I didn't know what kind of care to to pursue or what I could expect from the medical system I had no idea what questions to ask both his doctors or him about how he wanted to live out his last days we are so profound only underprepared for this experience and and I thought to myself if I'm having this much trouble and I have a graduate degree there's a lot of people out there who need help so when I met BJ we were in this crazy brainstorm together at idea idea was the kind of place that likes to like create this a lot of pageantry around important and hard conversations so we actually built like a death eert within our offices I'm not kidding you we actually built like an igloo like structure inside our offices about ten of us came in from the Embarcadero through this narrow passageway into this yurt and we had a candlelit conversation about how we wanted to die and there were some pretty grand visions these are designers mind you so people imagined you know being on an iceberg and Iceland with like you know Sara through straw booming people had playlists people had the whole room and that imagined and I was sitting there thinking wow this is nothing like what it looked like to be with my father and sit with him as he was dying it was a very quiet experience sitting in my sister's old childhood bedroom just you know stroking his head and whispering into his ear and trying to scramble and find some Yiddish folk songs I could play for him because I knew that's what he would want to hear and so I was thinking how do I square these two visions and I kind of locked eyes with BJ and I think he could feel the regret and confusion that I had and there was just like instant trust I felt instant trust and so we worked a little bit on that TED talk together and then on the back of that which went kind of crazy beyond your wildest imagining my bad is it 12 million people have watched it now it's crazy that's it that's called going viral a little bit but beyond no bacteria my gosh your TED talk with bacterial so so yeah that's how we came to write the book together so let me ask it kind of the philosophical background question for this and we've talked a bit about this there aren't how a lot of books out and so forth but backing up to what if you were trying to encapsulate the elevator speech since almost every religious and faith tradition and humans have come up with councils that awareness of one's own mortality is very important for various reasons so how do you see this what's the primary benefit of acknowledging this fact of life got someone your mind well I just I'll just I I don't know if it's 25 or jealous but I'm actually just reading Frank's book the five invitations now and he talks about how being in relationship with death informs how you live and that's that has very much been my experience I think you talk about that a lot the idea that if you are in relationship with it throughout life it changes the urgency with which you live and I think you know we've heard many people on the road with this book come to us and say you know there's this cliche of the gifts of cancer like you know when you have something that is forcing you into a sense of a timeline and a trajectory it does change the urgency with which you live and so that that's what I would say yeah I guess mine's a version on that too I think I think if you look at the ways you know the us as a young as such as a young culture beside is the way we deal with aging and death it's our tell wait keep treating them as though they're kind of up you know you know signed them to feet or something that you cook to the bay if you have only thought positive thoughts or eight or get the right veggies or whatever else and it that implication it's kind of smeared all over us and then you watch so many people feel like embarrassed to be dying or ashamed to be sick and it just breaks my friggin heart like I'd only have to be depressed or sad or pain then you have to be embarrassed to feel like on top of it it just it drives me bonkers and there's no nothing in us that's trying to make death easy in this book that would be really mm-hmm but it is a rich experience too and it does have this thing as a foil for the rest of life it just makes can make beautiful beauty pop and all sorts of beautiful things happen so I guess it no coming along so I guess we're trying to work on behalf of our society roping death into its field of view roping death into this idea of reality not the end not the antithesis of life but part of it I think that's one way to put it but more maybe more technically I think the book is just basically gonna help you make make it less difficult and more meaningful in a nut so yeah so that's sorry I usually have one of these on too but that's the next question basically so as I mentioned there's now a shelf of books out there is a lot I know you guys didn't know I want to write another one that repeats otherwise so what is different and unique about this one tear why I think I mean I think this you know the subject is you can put anything into decide again it's a big pink abyss and it fits everything anything and everything go in it so you can project amazing amounts of stuff onto it and it is a fascinator like it's not imposed it's like but they're the subject are mortalities is way more fascinating than we treated the idea that we have to we have to learn to love this life even while we're losing it it just it's a real it's a mind bender it's a powerful challenge to be a human being so I think there's all sorts of fantastical things to think about it but what what felt like it was but we felt like the world needed right now with something pretty darn practical like in one place you can think through what advanced directions our estate planning right next into some of the psychology the psychological and social emotional issues that go with it and not force the reader to choose blending populist offer - I need emotional stuffer just kind of lay it all out in some distilled way that's not pretending to tell you everything there is to know because we don't know but make a lot of space for what we don't know but also point out the things that we do know that's the basic gist and so I guess in a word this book feel much more practical than others that we had seen and and at least an attempt to be to speak to something of a common denominator among people whatever your religion your sex your age if wealth status whatever for example my son who's 12 was really constipated this week just to overshare for a minute and I was like oh yeah we have something on constipation I actually went back and read it but we literally sent set out to think about the entire experience from very early on you know when you turn 18 many people don't know that as you become a legal adult HIPPA laws are such that your parents can no longer see your medical records so if you go off to college and get in an accident god forbid you know doctors really are not supposed to show your parents your medical records which can be very complicated when you are you know unconscious and your parents want to weigh in about your medical treatment so you know from that moment we advised that you know when you turn 18 you should really have your parents be your health care agents you should sign that that documentation a power of attorney for health care or an advanced directive even at that point we talked about creating a when I die file which is literal it can be a shoe box it can be a file it can be a cloud drive but it's a place where you put all of your paperwork you put all your passwords you put all the stuff of life that you've accumulated so that when you die the people you love aren't forced to go through this horrible accounting that most people end up doing and when they lose someone which is that they have to find all of those passwords find all of the accounts go through this slog of shutting down a life you know it took my sister and I two years to do that for my dad and he was pretty organized but still there were bank accounts and things that we had to deal with way past you know the horizon when we were imagining we would have to and this is all when you're like in the thick of grief having lost someone and then you have to get on the phone with Verizon and sit on a phone tree for three hours right it's like pouring salt into a wound so we go through a lot of very practical stuff in this book how to prepare yourself in terms of the paperwork how to prepare yourself emotionally how to have the conversations the tough conversations you need to have with people in your life to ask them the questions I didn't know how to ask my dad about like if you move you lose your cognitive faculties if you if you can't recognize us anymore if you can't read the paper anymore does that still feel like a quality of life to you you know do you still want to hang around on this earth for a while if you can't do all that stuff and I didn't know how to ask those questions so we go through a lot of that practical stuff welcome a lot that's that's you can see why the first chapter is called don't leave a mess yeah right and let me tell you the rest of me give you a flavor of this so it's don't leave a mess leave a mark yes there's paperwork can I afford to die then dealing with illness section I'm sick taking stock now what coping breaking the news and love sex and relationships and help on the way hospice and palliative care symptoms 101 Hospital hacks as in hacking getting in there getting dealing with hospital help I need somebody care for the caregiver everyone dies how to talk to kids it's your body and your funeral this is wooden death is closed can I choose to die final days and then after the first 24 hours grief how to write a eulogy and obituary celebrating a life and what's left and as with the car manual a lot of really practical information glean from experience and training but also it's it's very directly stated and almost like a conversation the way you you guys have written this which is it deceptively easy to read that kind of stuff any writer will tell you to make it sound conversational and very direct is actually the hardest thing to do so you guys are great at that and then but each of the practical things has a very human philosophical side to it as well in some of these and you can tell your stories come from experience so really great book you know so I'm asking directed to you in particular because I know you're in the middle of this and I have been to within healthcare within medicine itself in particular it's a subset of the generational shift in a sense is that we were talking before about movements and so and debating in little is there a movement within medicine to deal with this in a more humane informed way now the specialty that you're part of and that is described in here a palliative care is part of that what does that really mean how does that come out in for people who are confronting terminal illness or at least the possibility of that in health care well so it's all heard of palliative care anyone not heard you should give it a quick okay I mean there are a lot of different ways to define this field I mean most of the definitions if you go online there two or three paragraphs long it's kind of tricky to find but essentially palliative care is the team-based approach to quality of life and the mitigation of suffering you might say trying to make it been hard stuff less hard the good stuff more good basically is the gist and then Hospice is a subset of that kind of care so I don't care one of the problems we have in this field is that everyone conflates it too and so people think of part of care is only relevant at the end of life but one of the things to really get across guys is you don't I have patients they've been seeing for 12 years we're nowhere near death but they may still be suffering from the effects of she's so pavatt cares is trying to wrap it just wrap their arms around folks who are dealing trying to cope with serious illness period and then a subset is hospice and end-of-life care okay so that's how they're related since 2006 it's been an official subspecialty of medicine and it's officially called hospice and palliative medicine okay so that's that's this is all very new stuff even though the subject matters ancient and in some ways it's what health care is ever concerned itself with the way health care was gone in the last 170 years has meant that a subspecialty this esoteric thing you had to come along to point out the obvious it's very telling about where the health care system is it requires an exotic field to point to the basics but here we are that's just the truth of it so in some ways the the primary patient of this field of palliative care is the healthcare system itself a lot of us if we have our way we're try and drive those principles deeper into schools of medicine nursing social worker and chaplaincy so that you don't need a specialist to seem to be able to sit and talk to you about things that you can't control etc so that's happening but this is a very health care industry and institutions that feed it at the healthcare education stuff it's all complicated and moves really slowly so just so you guys know that's happening but I wouldn't wait around we should not wait around for that health care system to enlighten us it's on this stuff it's usually the other direction patients and caregivers are the ones who are really doing much of the teaching for us clinicians so so that's one kind of comment steven is that's what I'm helping him hell going on in health care and that is that it's a real movement you know there's a different that is a different lens Resta health care is focus on the disease we're focused on the person dealing with the disease and that's a really important distinction so have hope and is that the system is letting these thoughts in and that's sort of an infiltration model of happening so now you'll meet surgeons who have pound of care training for example so it's spreading out stay tuned but the more interesting worker just as ending or bigger work I think is among us as society as a culture and item so a lot of us we were talking earlier list you mentioned a lot of us were wondering is there a movement area so it feels like for a lot of us there's a lot of energy in this thing there's something that we all know needs to change that we're all struggling more than we need to and we're more isolated than we need to be because the thing that's isolating us are these very universal experiences so I was sitting in my clinic and on one patient after another tell me how lonely they are and and the thing that's isolating them is this very normal thing called illness or this very normal thing called you know deaths coming soon in the way where why right now those those things have the potential to unite us somehow are dividing us so there's there's that to tell it's an indictment on some how we're handling this subject how we treat ourselves in each other when we're suffering there's something here for us too and I also believe that if the health care systems really gonna really change its a lot of its gonna come from pressure from the out it's going to be us patients telling our doctors what's important to us and not waiting for them to ask etc so maybe if there's a central central movement we kind of mention this a moment ago but if there is a if there's a central method message for us as patients as the public maybe it has something to do I love I would love your your thoughts on this but maybe maybe it is something very something to do if it's on us to push back these reductive tendencies that keep narrowing our sense of reality push back on those and demand that nature is part of human nature that death is a part of life and said I may think of a captain state articulate the right capture for all this then there won't be so many are you inside or outside you know are you part of the group are you outside of the group well what if we have the right catchment we're all in and that I think is a central message the central charm of our mortality is that you know this we say this in the book you can't say enough it's like 100 percent of us go therefore we all have this in common it is nothing to do with failure you will not fail it dying and it's the one thing you see that there's a lot of little for reassurance on this and let that be this thing that unites us hard as it may be we all are dealing with it so let's come out of our closets on that I used to say when I was teaching in the medical students that life is one of the very few conditions that has a mortality rate hovering at a hundred percent again still in in health care so this manifests often as you know too well with an inability to give up on trying to fix it yeah right so it you know with hospice care in our nation it's getting better but in our nation among other Western and developed nations a stay length of stay in Hospice is much shorter other places Europe Japan Australia they're much better at realizing when they're not going to fix it and they should go to a palliative model so here we tend to have people for a much shorter time and it's more difficult to work what you're trying to do with hospice care everything so how do you change that fundamental problem of getting the professions healthcare professions saying doctors but it's at all its you know to realize that there is a limit in that they should go sooner to a carrot of instead of a curative model are we teaching younger students now and they get it yeah you know but old dogs and new tricks is really hard well it's really tricky I mean it's really you're right on I mean there's some a lot to say about this one is the truth of it too I mean let's not accidentally shame ourselves by shaming the shame around it because there's something we are wired on some level we are wired to run away from anything that threatens our existence you know we have hormones that flow through us in a millisecond you know there's just there's something there's something very real about that too so you see sorry you see that kind of these these these especially in a stressful setting like an ICU time you see these sort of basic human impulses playing out and I don't want to a little those those are real then you have the problem of clinicians not being very well educated or on how to have conversations with people how to sit with people suffering that they can't change how to note the limitations of their craft doctors classically will tell you that's very important stuff but they're not trained how to do it so no one's very comfortable having those very uncomfortable conversations a lot of patients you know the the you know here we are all together you guys came out to this talk but there's something we have to acknowledge too there's a fair amount of denial around this subject and even those of us who think about it a lot when it comes our time I mean the hospice world is filled with clinicians who have spectacularly difficult deaths because they mean very easy to seduce yourself by thinking about it by talking about oh and it's my time I'll be fine on the impede not necessarily so so you got so you've got these are social layers is construction we don't have a language and may not be polite to talk about these things even all these forces it and then collude to keep this subject out of the room a little bit and I see it play out again and again in medicine and doctors will go in these come these meetings were very well intended to say I'm gonna really we're gonna really talked about the whole cold hard truth we're gonna really and the patient won't allow it no our witness so many I so many experiences where I've heard from a patient that done on conscious he never comes minute it never and then I'll go to oncologist house and he'll say or she has I have told we've had this I've tried that this conversation 15,000 times look at the record I just put in the chart and they just won't hear it they just can't hear and you hear these stories all the time so it's not so easy as dr. sock and patients are amazing it's not easy there's something all of us that kind of keeps the stuff at bay or week and a half talked about it we squint through it so we can fruit you're like can we convince ourselves we've actually addressed him when we barely scratch the surface so all that stuff is playing out and then you fill in these are systems issues and they're you know this is a policy issue tombs from aboard the hell you guys it's a big question but there's a policy how health care gets reimbursed the incentives are incredibly perverse that's what the Affordable Care Act was meant to help us do is to start an incentive izing quality not just doing more stuff and but we're still stuck with this fee-for-service just keep doing more stuff that's what we get paid more patients want more stuff we want to give them more stuff we're gonna get paid more so why you know in the heat of it that's just skinned away it's just the way it's gonna play out again and again and again then the last point I'll make is and this is why I think the reason why this book was we felt important like like we're saying there's a room for a ton of reassurance you will get through this you will find your way to the grave I promise but I know I mean I'm sorry Cassie I mean really you will then don't worry and some level but we have this sort of modern overlay of the health care system whose technology is very impressive it is amazing and every year we try to catch up by the time we kind of catch our breath and find a time to meet some new gizmos are out and so if we're waiting I guess from long stories if you're waiting like in the old days in the old days maybe being 30 years ago well look I'm gonna fight as long as there's something to try and then when there's nothing left to try then I'll yield to this fact of death then I'll accept it that was a very reasonable let's that makes sense to me the problem is now the list of things to try is inexhaustible so if you're waiting for that list to run out before you turn your attention to the fact the idea that you're gonna die at some point or your loved ones gonna that's a grave mistake you will distract yourself all the way to the end and so that's why you have we have to overlay this new ability for us all to triage these decision moments together you will be if you're waiting for that doctors say now is it time to go get your affairs in order that's not likely gonna happen so we have all these pre dead people here today what would you I mean distilling this down so coming right out of that discussion is the advanced directive talk so what are the two or three most important things you should say to somebody listen if you're gonna eat no matter how old you are and where you're at what should you be doing now ahead of that time practically what would they be questions you should ask the person about their end-of-life care their end-of-life plans is that what you mean anything what would you you know most people most of us are like you say in denial about this in RK I'm gonna do things I mean I mean you'd mention or the doctors I used to do surveys in talks and the doctors had the same percentage of them who had done advanced directives as the general public which was about 20% yeah and these are people who see sickness all the time yeah so there's denial about it yeah breaking through so beyond I I'm gonna assume and hope that that's one of them is look into advanced directives for health care how up you know however you want to switch ones you say but what else yeah and by the way that's not an easy conversation right and so another thing we do in the book is we talk about how do you get into that conversation with people I mean you know what BJ was just talking about where the doctor says I've been trying to have this conversation with the patient for ages and patient doesn't want to have and the patient's saying I want him to be honest with me is not being honest with me there's this great anecdote about the family saying to the doctor don't tell him he's dying he can't handle it about you know grandpa and then grandpa saying to the doctor don't tell my family I'm dying they can't handle it you know so it's it's I think in some ways we're just talking past each other and I can just say you know having written this book I've been very activated around this conversation and desperately wanted to have it with my mother who does not have an advanced health care directive and is 78 and not in great health and so you know I kept trying to sit down with her and say mom you know I'd really love to talk to you about you know how you rent want the rest of this to go and she would just ignore walk away didn't I change the subject can't we talk about something more pleasant and finally I sat down with her and I said you know mom I would love to hear some stories about your childhood about how you grew up and then we were off to the races I mean she talked I just turned on my phone recorder and she talked for hours about what it was like to be a kid growing up in the Bronx and her first crush and where she went to school and the day she got lost and that became her way in and then I was like god it's so amazing for me to hear all these stories I didn't know any of this now can we talk about what are your hopes and dreams for the rest of your life for what the rest of your life might look like and that became a kind of side door to talk about some of this stuff and there's some very practical things you have to get down to like do you want artificial nutrition if you know do you want life extend measures which is what you're gonna check off on your advance health care directive right but those questions point-blank are not a point of entry is what I've found you know you gotta kind of ease your way into the conversation and so we do suggest some opening gambit in the book for how to how to talk about it and it's not easy to imagine it's not easy to forecast forward to a place where you are not capable of making decisions for yourself who wants to go there right and you know even having this conversation with my own husband saying you know I need to be able to trust that if I have the same share the same fate that my father had and I lose my cognitive functioning and I can't recognize you and the kids I want to be able to trust that you're gonna allow me a natural death by not giving me curative measures if I get sick you know so if I get pneumonia or a cold or a flu I don't want to be treated at that point and that's a really hard decision to make for someone you love it's really hard to not give them the medicine that they need when you love them and you don't want to lose them right so not you know it's not easy and I think we're all going to find our own ways in but I do think that we have found some side doors that we talked about in the book that are useful yeah I'd add to like you've just even more tactically like if you're probably gonna pick one thing an advanced directive can do is the name your healthcare proxy the person who would speak for you if you can no longer speak for yourself and some advocate and that's a durable power of attorney for health care yeah right on it was so I guess we're to say once on a very basic thing to go do on your checklist I'd that would probably be a because all the defaults and system even with well intended folks in the system the defaults are gonna always be to the ICU more to it's more the medical idea of the worst case scenario is death but we all know that there are some fates worse than death but as an organizing principle that's how its wired so you can't so if you can't advocate for yourself or someone can advocate on your behalf you can so easily end up down these chutes that you many of us don't want to be on itself that's a big big point I was also into Scioscia's point these conversations you know there's not like you don't have them once our minds change what any of us is willing to live with and what we're not willing to let go of it you know that's it this is all very dynamic over the course of a life so you don't have this conversation once you have it over time and not only because your mind might change but it also takes some of the sting out of it it becomes then you're a little bit more familiar with this conversation each of you has a more chance to think about and come back from different way different angle and your family you so get it routinize it once a year maybe the holiday time or you know if you're dealing with the diagnosis a change in status so if you go from my say a stage Street cancer to stage 4 cancer it's a really good moment to kind of revisit the realities of what you're looking at for example so get in that habit and I'll say one more thing about because it's cuz it's just aren't interesting and it's another reason to have a proxy as so there's so as a disabled person one other thing that's very interesting is how when I was in the hospital some of my mom's my parents friends approach them and seemed sort of suggested that they let me go yeah I hope that it would be so horrible for me to live with these burns and missing body parts and that they would be doing me a kindness by letting them let me go what's so funny be I would go see these guys at a cocktail party later of course that was then that was there I didn't take it personally but my point there is like you know imagining what you'll feel like someday in these shoes that you can't imagine is it has its limitations yes empathize try to put yourself in those shoes think about it amen that's important I didn't know the limitations of that until you're there you may not you may feel very differently and there's their data on this in the disability world like there's some study like if you of er Docs and nurses if you were and when it got an accident you're a quadriplegic you're brought to your own er would you want your colleagues to save your life and the sudden like 85% of hell no I don't know I'm not living like that now ask a B 85% of quadriplegics who would never have guessed that they could live in that state after they become quadriplegic eighty eighty-five percent of them say you know I'm really happy to be here I wouldn't have guessed as much so there are limitations what you can imagine all the more reason this is a dine up that gets again this is a dynamic thinking this is changing over time and that's why that proxy you knows you can help sort of extrapolate from the truth of you into these new shoes that make sense okay so one more sin one more thing very good question about like just down there to practically speak so yes advance directive yes the proxy I would say two more things within the advanced directive world there's a pulsed form so if you were seriously if you're living an advanced age or with advanced illness there's a pulse form it's an acronym physicians order for life-sustaining treatment look that up most states have laws in the book unlike an advanced directive the pulse form is signed by a doctor so it's a medical order because right now you can do all your advanced directive it doesn't necessarily mean the hospital's gonna honor it there's a lot to say about that but a pulse form you have legal protection so that there's what that's a really important form to have and have it very accessible so if like a lot of us was coach if you're living in the throws of advanced illness put them put that on the refrigerator in case Mattox have to show up they'll see your wishes right there and it's a doctor's order they're protected lasting a huge source of suffering at the end of life or an illness it's extremely expensive and families are going bankrupt all the time health can cost the number one cause of bankruptcy so take the time put your stuff in a trust keep your poor heirs out of probate court royal court and things like that so just financial planning we can talk more about it but I have to note that's one of the major ways we really suffer the end and just getting everything into a trust is also a form of suffering go into the bank and making that happen [Laughter] yeah and on the post form it actually is it I helped write that thing for California and and so it's kinda it's designed to stand out it's kind of the color of BJ shirt here in paper but it also goes into the ER what is now the common most common electronic medical records so it would follow you around a few changing your you know main providers amazing story when we weren't researching the book about this guy who actually tattooed DNR my his chest and had a massive coronary came into the ER and they ripped open his shirt and there they saw DNR and they had this crichton's ethical crisis do we abide by what is tattooed on his chest and not resuscitate him or do we not and they ended up not resuscitating him and there was this whole ethical quandary around it and I think the Ethics Board determined that they had done the right thing they had you know done a human centered thing and abided by his yes report II found the DNR later they found the actual DNR has been a couple days we reported a lot in the medical literature but one of the big arguments one of the nurses made was what if those are his initials a girlfriend yeah mom you know I want it you know you have a great chapter on fear and not just fear of dynamite just fear of what's happening you you you have the great quote that maybe unfortunately now it's Woody Allen but as I'm not afraid of dying I just don't want to be around when it happens you know which which is really true for a lot of people but the most common conception is that people are afraid of pain at the end of life and what's actually been shown through like surveys and just direct experience it's mostly a loss of control and whatever that means for you you know so part of it is these advanced directors having some control of things but what else can people do in terms of mindset and practical stuff in terms of taking control yeah well you're right so then one thing to sit interesting so you guys know about the end of life options act that's our medical aid and dying in our state and along with six or seven others you know you can legally obtain a prescription for medicine that's intended to take your life within the context of advanced illness it means their parameters rounded but that there's it's a very interesting and really flummoxes the healthcare system and all sorts of interesting ways although it's really gaining momentum and acceptance um but I was in porting I guess that point there was Oh from so Oregon was the first state in 1997 and a lot of data coming out Oregon about how this law how this law is played out and one of them is just to Steve's point that a huge chunk of people who actually get the prescription go through all these stuff to get this lethal prescription never use it and that the realization simply is that you know it's just really nice to know you have this parachute in the medicine chest if things get too nuts you have a way out and that's that is the therapy knowing you have that way out so just confirming what you're saying a big thrust for all a lot of this is its control so you know I think it's a really useful thing to look at your fear around about anything the fear can tell us a lot can tell us a lot about what you care about and a lot about what you want but I'll say is I've found it very useful to divide when folks when fear comes up around death and again this is can may be a little bit overly convenient but it works are you afraid of dying of the pain and suffering you imagine is sure to happen because that that's you know we know a lot about the dying process and there's I can really reassure you that you know you don't have to not necessarily you're not gonna be in miserable pain necessary there's a lot we can do not 100% but there's a lot we can do to help you be comfortable in a life and you don't have to have a miserable experience in your final moments not necessarily and that's something we know now there are a lot of us have this sort of fear of being dead something much more it's much more interesting much more existential philosophical spiritual but being non me I mean this is this big monumental wonderful beautiful questions so a lot can be lurking in there but very often when you open that up with people well sometimes you know sometimes that what pops out is you know if someone I've already given bless you is a person of faith you know sometimes they're afraid of dying because the judgement days come a they think right and then and once we kind of uncover that then it's very easy my prescription to them is to go spend time with their priest it's not more medication or something it's very it's a very useful thing to kind of fear doubt and help them direct their time sometimes it's a fear of missing out you know and what is that it simply just points you to all the things you love and how hard it is to imagine the world with that that's gonna keep going without you that's kind of sad in hard legs feeling but really underneath all that is if you're asking this question what you're afraid of and you realize it's all these things that you love so much that you're gonna miss well if you're asking this question you still have time right so that can be a really galvanizing moment for people to realize where their priorities should be so as an example that's a really it can be a very useful path so anyway unlike that there are ways the fear around mortality is begging us to actually come closer to actually look at it it is it is a very rich zone versus a lot of fears there the the precision is to run away go the other direction you're afraid of a snake go to leave the snake now this is very different this is asking us to go in and this is where we need support we need to help looking this is where psychedelics can be very powerful at the end of life for example we're getting to that this is more ferocious Shoshana there's a chapter in here about dealing with kids around the topic of death that I thought was really great 25 years ago I wrote a grant proposal to actually develop a curriculum for teaching kids about death and I actually got to the last it was a big one foundation back east and they flew me back east I got to the last round and then I was rejected and I finally ran into one of the board members some time ago what happened why didn't I get it he said you you really kind of freaked them all out you don't talk to kids about this stuff you have this bit day and you also have a beautiful letter you wrote to your daughter in here so I mean do you want to say you know when children are in the equation in a family or children themselves or young people who are dying with some advance notice yeah what is you know advice there well we had we had amazing advice we talked to someone who specializes in talking to kids who is how I had a pediatric focus and you know it's kids can handle so much more than we think they can and we try so hard to protect them and to swaddle them and to keep them innocent but the fact is is that they see death all over the place right like they see maybe their dog dies Grandma and Grandpa and if we're not honest with them about the fact that we all died and this is just a natural part of life they will fear it more and so we have this little book within the book called eight questions kids ask and they ask questions like can I catch cancer you know I was mean to Grandpa last week and then he died this week am I to blame is it my fault so just being super honest and brave and sitting down with them and saying look honey people people get tired and sick and their heart stopped and this is a natural way of life and it's not your fault and we're all sad and it's okay to be sad you know bringing kids to a funeral there was a lot of question about that should you bring kids to a funeral and again it's just about preparing them you know there will be a body inside a coffin the body will look like it's sleeping you know grandma will look like she's sleeping it's nothing to be afraid of you can touch her if you want and just normalizing it you know making it feel like it's just a part of the fabric of living so that was it was really great to be able to do that we have this wonderful illustrator marina Lewis who brought that whole section to life with these beautiful drawings of animals taking care of each other so that was a real joy and then the letter I wrote thank you for bringing that up the letter I wrote to Cleo was again as part of thinking about this when I died file and kind of compiling all of your things it's the idea of what would it feel like to sit down and write a letter to the people you love knowing that we have no idea when we're gonna go like I could go out there and on my drive home not end up coming back home you never know so I sat down with this woman named Fresh Brandt was a good friend of ours who is like a a letter midwife she just coaxes coaxes it out of you and she just asked me questions what would you say what would you say to Cleo who's 13 and so I just told her and I I spoke it out loud and she took ten minutes and she typed it into a letter and I now have that letter with my will and all of that stuff so you know if something happens Cleo's gonna find that letter she probably read it in the book before she finds a letter probably not nobody reads anymore you know sadly um but anyway it gave me a great peace of mind to know that I had said those things in writing and and that she would have that I didn't ask you this before but I'm actually moved to ask you it sure would you read it to us oh sure Cleo you are incredibly strong and can weather anything in your life they're likely going to be times when that strength is challenged you may feel let's see if I can get through this holding it if you can okay you may feel like the world is testing you doubting you perhaps doesn't see you the way you see yourself remember this you are capable of anything you can see the world as a series of open doors if you can see the world as a series of open doors rather than closed doors there's nothing you can't do I learned my bravery from my mother who never heard the word no a crazy matriarchal spirit comes through our line there is art in there if you look for it your great-grandmother Paula could take any misshapen lump of clay and draw a spirit out you will carry that forward as a child I felt like I was being chased and you have that same fear there is some value in that fear because our time not unlimited and in a way we are being chased by death and have like 5 minutes here so do all you can sometimes I feel like our family had a lot of strife I worried about it I worried about not modeling well what a loving family could look like sorry guys I didn't realize this was gonna do this just today and I hope you know how deeply your father and I love you Cleo we are on a small blue marble in the sky look up and there's all consuming and overwhelming as life may feel remember that we are just a small part of everything life is a really grand experiment and I have no doubt that you are ready for it [Applause] I'm sorry to spring that on you but that's I thought it was so beautifully done and it contains so much that and it shows the spirit behind this book so let's come back to the the much simpler issue of drugs BJ mentioned this so I happen to pick up down at the little book exchange here downtown Marin magazine which is usually about real estate and food that's about it I mean and but it has this whole article and it just shows how this is spreading called free your mind once taboo psychedelic drugs are being rethought as possible remedies for PTSD depression and addiction which is true the interesting thing is is one of the key things that it's being looked at is for dealing with end-of-life anxiety etc etc coming to grips with mortality but on a conference last june about this at UCSF that sold out and the first-ever clinicians I'm sorry that's different but there's all sorts of stuff going on in this now and I know you've been directly involved in looking into some of the research on it what is the application or the ideal that we're looking at for using this in the context of mortality and dying so yeah you know there I had not been aware I mean there's huge history not just beyond our own 1960s history with psychedelics I mean there are plant-based medicines that go back hundreds and thousands of years at cetera and there so there's a lot to pick up on of existing knowledge and alone this is not new but there's we're newly revisiting it in a sort of a medical context and so so far Johns Hopkins NYU UCSF there may be other institutions in there but these places have revisited research specifically with psilocybin and also MDMA but psilocybin is probably leading the charge right now and these are the are contact like your sanity there is there are data now to support and it's probably maybe three to four hundred subject subjects have been tested to single dose of psilocybin with two psychotherapists as guides with some specific music and iPad and eye masks on there's a this whole process and sudden setting is very important there's a meeting before you take the drug and then an integration meeting afterwards but with all that effort just a single experience has been dramatic for folks who were gripped by death anxiety living with illness and terrified of death to the point where they were just incapacitated is there not folks who are just trying to get their jollies this was not these are folks who are really struggling and then single experience with this mushroom and came out of it completely feeling part of the you know part of the cosmos part of the world around them completely losing their fear of death the dissolve between and this this question of fear of death brings us up is the the distinctions of barriers between ourselves and others it turns out no one's autonomous and we're very porous beasts and there's life's in and around us all the time and this experience is just to show you that prove that and so out of the backside of this one time experience was zero adverse events none and then they would ask these folks a year later or six months later and the their their sense of belonging and their lack of anxiety remained just one trip so it's astounding we need medicine how have anything else like this to offer it and this sort of existential fear the closest we have would be we'll smother you into wet blank and we'll give you a valium or something to just you know Matt like just quiet your brain but we otherwise we don't have much to offer this major thing that the existential fear existential anxiety I think it's probably the most common complaint if we articulated such in any clinicians office and so here we have this ancient route this non farmer route that can do a ton of so it's really really excited and it's happening now so what is phase three of studies and it's coming online I wouldn't imagine if it's you know then next maybe five years three to five years we're gonna see some effort to get the FDA to improve these drugs so there's some really interesting stuff going on this is what we have in common with the Volkswagen books let the giant eat a mushroom and don't drive you know I just do we haven't really touched on this more specific to what we're talking about drugs but so the legal wants prescription drugs we talk about pain this country's in the midst of a huge drug problem related to medical use partially but with opioids and so forth and the balance clinically has always been you know the fear of addiction which is as they say in psychedelic country I just wonder if you have a comment on how do we deal with that I mean the end of life it's not supposed to be a problem just be able to use whatever you want with patients to treat pain and distress because addiction isn't gonna be an issue but it does impact it hovers over healthcare and over the practice and you see has it been improving in that regard addiction how we handle non addiction of treating pain in end-of-life in particular no in some ways we're going backwards had to say yeah sorry in some ways and there was a so I I my own experience as a patient and all sorts of pain you can imagine from electrical burns including this Mindbender of phantom limb pain which went in early 1990s that was considered a psychiatric phenomena not a physiologic one so that was no fun there's no fun to have these horrible sensations and summer sort of look at you like you're either crazy or sort of pat you on the head I mean it was and it was very normal if anyone very normal to have your pain second-guessed and it's a really miserable experience then in the mid 90s I can't remember his name there was an anesthesiologist who was a pain researcher so she came in on the scene and suggested that you know that no that medicine really had a duty to take pain seriously a lot of doctors had found a way to say well paint you know paints part of the disease I'm gonna work on your disease and that that's what I can offer you your pain is sort of a consequence it's not my department kind of thing again if you focus on the disease as a system that's what you're gonna get if you focus on the person dealing with the disease you'll get something else so with some new data suggested in sort of an anesthesiologist pushing this idea that pain became the fifth vital sign so as important as your blood pressure and your pulse your temperature where are you having pain and this if it was felt like really this felt like evolution in action this felt really great that people were gonna take pain seriously and medicine was gonna address it and so it did to some degree and then all of a sudden what would that would that look like was basically we loosen the grip on our prescription pads and just started pushing opiates pretty freely and we all and we were pretty convinced that was a good thing to be doing less sure paint opens had a had a downside but if you're really treating the pain thoughtfully and carefully then most time you're gonna rework gonna run afoul of addiction and if you did there were things to do about it it was basically the idea and whatever those things were the old days of ignoring pain that's certainly worse so we all felt like we were and some improved path until we realize we weren't and that the evidence mounted that the whole communities were just being decimated by this this lacks attitude towards opiate and a lot of the lot of these drugs were in the form of pills and they were coming on doctors offices and so then now we're in this moment in the last couple years coming to terms with that fact and unfortunately it feels like what's medicine is doing is going back to this very clunky fix which is no actually pain isn't important anymore sorry we're not gonna treat that pain and so we're worse the pendulum swinging back and I'm really pretty on enlightened way and it's and it's really terrifying and I want to say one of the reasons always clinical medicines become very difficult if I'm prescribing an opiate to a patient the amount of Hoops I need to jump to my team my staff and the administrators need of the paperwork it's so obnoxious and then you'll get to a pharmacy in the pharmacy may not stop that may not stop because they don't want the liability and if even if they do they will find some way to make you the patient feel like not looking you suspiciously like what do you need morphine for you look fine you know and just all we're going back to the shaming and so trouble all I can say I'm not I'm really worried about this right now and the upshot will be pressure on researchers on the system to come up with other routes of treating pain meditation other kinds of medication more specific kinds of medication you know if you look at overall research at funding in healthcare probably less than 1% of research dollars have anything to do with researching things about how you feel your experience of including pain so you know maybe this will put a pressure on us to uptake the research that goes into the science of how we feel mm-hmm and what are we heard from care givers to how difficult it is when you're desperately trying to get an opiate for your loved one and they won't refill a prescription you know because you you've you've used it too quickly or you know they're concerned about abuse so you know you're calling the pharmacy over and over again you know I need this medicine my my loved one is in terrible pain and it falls on deaf ears so it's terrible for the halo of caregivers to who are trying to get that pain medicine I will say it's a nice plug for hospice we also wonder if one of the many reasons to go on auspice when it's time is you get to sidestep a lot of that that clinton that clerical junk so hospice can go can bring those opiates to you through them so there's nice as an option on here for once you're on hospice to avoid a lot of that junk so you guys wanted to do a little bit Q&A yes'm okay so let's you try that now questions for our speakers I want them to be questions not speeches please because we can get a bunch of people in here but anything's fair game I think yeah so please go ahead yeah okay I guess it's me I'm sorry I'm sorry excuse me I'm gonna um I want to know it in your research you found another culture that had a really enlightened approach to death and what that might be and if we could if you could tell us what it was and we could go study that culture see because it obviously it's a real cultural phenomenon around death so anyway that's my question yeah there's so many examples um that wasn't the specific focus of this book but we certainly came across a lot of it you know first of all in the treatment of the transition and this big life cycle moment is that could it be a more celebratory moment you know my friend who grew up in sitting a horse said there were raids and fireworks displays when someone died it was a celebratory moment we see Dia de los Muertos and how you know you celebrate and honor your dad and it's it's a it's a you know a celebration of our history and our legacy in ER and the people we've lost and then just I have to say I moved to Denmark for a year right when we finished writing this book and boy are the Scandinavians of lightened about treating people with dignity at the end of their lives they are much more livable liberal about allowing people to have agency in whether or not they want to live anymore so that aid and dying it's much more much more in the actual patient and persons purview and just a sense of not over medicating death is not a medical event we are not going to try everything we are going to treat you as a whole human being who has spiritual needs and a family relationship and this may be a group decision we had a really interesting experiment where we wrote an op-ed about someone who wrote a whole Steve's what does Steve's prognosis about the operation yeah yes prognosis declaration um where he and his wife wanted for control over how much she knew about when she was gonna die and there was there's a series of questions this is not bad we wrote for the New York Times about how much you actually want to know about how long you have which is a decision and why shouldn't people be able to make that decision for themselves rather than having it forced it upon you and and that's something that you know he's trying to advocate for here there are there's so many people and so many actors in this movement that we're trying to start who are trying to move to move the wheels on this but yeah there are so many cultures to study out there and I did love the Scandinavian way there is a fabulous book called the gentle art of Swedish death cleaning which became a best-seller which is crazy but it was a I think 75 year old 80 year old Swedish woman who wanted to just go through her house and clean it up and tidy things up before before the end of her life and she was doing that as a gift to her family and she writes about it yes so I am I've had stage 4 diagnosis for about five years and have been given different times like you know then it was less than a year to live those well maybe you're in the five to ten year cohort so I've had to deal with that idea of dying for a long like a good long time and I've been very open about it and I found that some of my friends have been responding like just they've kind of disappeared a lot of friends have been much stronger and wanting to hang out and I've been sort of like yeah this carpe diem must go do stuff that's fun is there something though psychology books that I could be sort of like reach out to those folks in my life who have sort of disappeared or are avoiding you know because it is like you say it's the most you know feared thing and people just don't like to talk about it well there is a French bug comes to mind to five invitations as a way to help people find some way to relationship with this subject so ostensibly they don't need to run away because they don't know what to do so I Frank Isis ESPYs book two five invitations especially if you come if you're partial to a sort of a Buddhist approach so that would not highly recommend specifically to friends oh I wonder if he's one that we could think of we think on that if there's one that would be really good to get to your friends would think about that there's that great card book Kerry's book about couldn't we talk about something no no no yeah you've seen that one yeah basic things to say to people yeah it's all about like what you say to people when someone's died yeah yeah okay I trust you yeah think about it let's see if there's another reason Vanessa's not to find it but we do have a big resource section at the end of the book includes a bunch of other materials and business stuff I don't remember but yeah and there actually is a bunch of stuff in our book about this very phenomenon where people run because they just can't they can't contemplate it they're scared they feel awkward about knowing what to say you know there's so many layers of fear and and self-recrimination actually people don't know what to say and don't know how to deal with it so we do we do talk a lot about there's a chapter called breaking the news which I imagine you've had to do a lot and it's all about how that's received and to prepare yourself for how it's received because not everyone can receive it this will sound like a hypothetical question but it's not if you met somebody today who told you that they were in intractable pain that they were going to end their life in exactly six months they give you the exact date exact time does not qualify for end-of-life in under California law they're going to do it themselves this is in a state incidentally that still has a law on the books that says anyone who encourages advises or assists a suicide is committing a felony and so what would you do mm-hm what would you say to them sorry getting stuck with this one that's a doozy it don't move I mean I'm joking but it actually has happened people have moved to other states but was your question implying that they don't have a terminal illness per se and they wouldn't qualify in those states anyway right gotcha right gotcha right well I think I would as a physician you know I have an oath and I think I could deal with the law I may be naive but I think I would I think what I would do is sit down with that person and my what I'm trained to do is to open up like what's behind that question what's behind that impulse because sometimes you're met with folks who have a very compelling vibe around them that they're ready to go that this is not pathological they're done and they need your help but there's so much can be lurking behind the request to a hasten one's death is it untreated depression is it family pressure because they're a financial burden is it they've lost meaning in their own life they have no sense of purpose and haven't had found help to repurpose it etcetera so I at least what I would do I think and sit down and open up that question talk about all that's behind it and I don't think that would I mean if that wasn't caught if that someone thought that was encouraging anything I would I think I could fight it and beyond that if I really landed in this place that there was a very durable thoughtful request in there and it wasn't just a failing of a family system or health care system etc that they were really serious and this was true on faced what they wanted to do what would I do I mean and I think what I you know if I got to that place where I had real confidence in this person's request and that there was an untreated stuff I can't remember what they've called themselves now but though hemlock society is split into compassion and choice as I understand compassion choices which is sort of the policy piece it's above board you'll see them advocating for end of life options act in various states and then there was a second arm I don't know what it's called well there you go final action that Network X if I don't exit network so this is a folks this is underground these are folks who will help people in their lives and I don't know if my telling someone about the existence of this network would constitute something illegal I don't know but that's what I think I would do yeah there are you know so I came to this long before pre legalization in California and like I say in the middle of HIV epidemic and so this was a very common question people who knew they were dying and it was all underground but it happened a lot and there were resources pesterin on mimeograph sheets and formulas for this and it doesn't always work it's not as easy as some people think but it did happen a lot and it did happen where you could talk to people and not be accused of you know accessory to murder or whatever it might be and so there was a whole network in the Bay Area among AIDS patients on how to do this and it did work a lot and now online you can still find a lot better information than was available then other questions we had here yeah I appreciated your your notion of focusing on agency at the end of life and having that be a priority for those who are in caretaking or you know social workers physicians whatever in that role and it's in contrast to and I think it was you to said it but what have you said something about you may have your advance directive but in fact the medical community may not an honor it and I was recently at a small lecture or a physician was talking just about those things and talked about cases where the physicians would not honor the advance directive and her advice was to thought about that tattoo that tattoo is wonderful you know but her advice was to handwrite something different something other than the form something that that had a personal piece to it so that it was in your writing and then your family and the people appointed to make decisions for you had copies of that your wish that you could use it I'm wondering if you could speak to that or talk about it mm-hmm yeah both probably could yeah I need that right you're one of the meta messages of what your of your point here is that it's not just about the form and the foreign is this clerical piece that's helpful but it's not the thing it's not right um and so these letters are sometimes Wilkin courage people too you know with their iPhone or whatever you can make recordings you know to hear someone in their own voice to something up here have a doctor or family and Brad I see you at the bedside and have the voice come over say hey this is so-and-so and I'm you know today is bah bah bah and this is how I feel and this is why I think it you know that's very compelling that's not a legally protected document but one of the reasons that these advance directives don't get honored one is the oaths or the cover-your-ass legal kind of thing then in the old days it has felt like got Mulligan's suit if we don't try that gizmo it's sitting right there why don't we try it and they send it in went but most people yeah well we're better off airing doing the thing even if say they don't want it then we're less likely to be sued I have a sense and I don't know this to be true that legal cases are mounting up in the other direction of people who stated their wishes didn't have it honored and then sued for them saving their life I would love to see that pendulum swing a little bit so there's fun this sort of legal cover-your-ass thing but there's also beyond that I mean it does feel when you're at the bedside when you're spent as a clinician you've got these you have these things that you know might help might work and you have signed these oaths and you have your own ideas of what life means and what it doesn't mean and your own role cara mia' it's really hard to be participating in someone dying sooner than they might have to is I don't mind that that's a challenge I don't mind that that's a hard thing for clinicians to reckon with I think there's a lot to say about it but knowing that it's hard if you can offer up this sort of complimentary contextualized very personal information again it's not legally protected but it's gonna make a very big difference that clinician going home at night knowing that did the right thing by pulling the plug or whatever it is so I do think if that's what if you're advocating for that you would certainly get agreement from us these letters on the side that flesh it out recordings whatever it is I want to ask you one last thing because it's a crucial part of all this and you have a great section in here about grief so there's anticipatory grief when you know a loss is coming and then there's just the grief of dealing with during and after there's a I loved this one sentence in here really grief denial fear at root they all have to do with longing if you stop and think about it missing someone or something fearing whatever might remove you from them and rejecting the idea that you'll ever be apart or all expressions of appreciation realizing this link is helpful it contextualizes the pain and sets us up to feel grateful to have ever had the health or ability or relationship in the first place so gratitude and gratitude right and you say one of you say the growing the great thing is a book and they say at the beginning is you have to guess who's writing which part turning it together so one of you said in there that in your experience and that grief tends to resolve in a certain period of time there's complicated grief which lasts longer and is more difficult but six months something like that I mean is that that's one of the essential messages of hope I think in this because when you're in the middle of grief it feels like it's forever mm-hm yeah and you'll never end but it does it does it shifts it moves I don't know but if it ends but it certainly moves and becomes a source can become a source of warmth because of that link to all that love and longing and appreciation one of the things that religion is useful for is ritualizing this and so many of us especially out here in groovy California are so unaffiliated with any kind of organized religion or we've kind of come up with our own religion but you know I was just struck by how helpful it was to me to sit Shiva but for my father and have a group of people just come and sit with me for seven days of intense grief and you know in that period you're not expected to host you don't have to make anybody any food or do anything the expectation is that people will come to you and just be in a circle with you and you could talk if you want to talk and tell stories or not and that's a seven day increment in which time you're not supposed to be functional at all really and then there's a 30 day increment when you're supposed to be kind of barely functional then not returning to work and then you have a full year of recovery and what I love about that is it's a staged grief process you know that it's a recognition by the community that you are not well you know you you have had a profound loss and you're offering from it and so I think it in a way we have to kind of recreate that for ourselves because we've lost so much of that sense of community and folding us and and taking care of us when we lose someone and there used to be all sorts of external you know externalization of grief you know hanging crepe and the windows are wearing black or you know with and in the modern workplace we've just kind of lost that you know people don't get paid time off after a loss and there's just no space to recover so I think we have to recreate that together importance of ritual in a sense to tradition so thank you both very much for coming here today [Applause] you [Music] you

Channel: NewSchoolCommonweal

Views: 890

Rating: 4.5999999 out of 5

Keywords: TNS

Id: QFpKIe_qPSQ

Length: 89min 0sec (5340 seconds)

Published: Mon Mar 09 2020