A Beginner's Guide to The End of Life

hey hello everybody it's great to be here so  welcome to tonight's program within forum at   the Commonwealth Club San Francisco I am the  Reverend Cynthia Carter / Elliot the executive   director of the Alameda County Care Alliance  won't you join me tonight in welcoming our   wonderful speakers Shoshana Berger and dr. BJ  Miller Shoshana serves as editorial director   at global design and consulting company I do and  I love this about Shoshanna because in the book   a beginner's guide to the end Shoshana shares her  experience as a care giver with her beloved father   as he navigated a condition on the spectrum of  dementia at the end of life she's also written   on wired spin and the New York Times BJ he is  a hospice and palliative care specialist at the   University of California San Francisco where  he treats hospitalized patients with terminal   or life-altering illnesses dr. BJ suffered a  major injury in college which resulted in the   amputation of both his legs below the knee and  one of his arms he started telling his story as   well as his thoughts on matters at the end of  life on the infamous TED talk video which has   been viewed now over 9 million times so tonight  we're celebrating their wonderful new book a   beginner's guide at the end practical advice  for living life and facing death now in my   opinion this is a tremendously special book  and B the reason I say it's special because   it literally is a user's guide a manual on  how to tackle some of the toughest issues   that arise at this important phase of life and  I like to quote both Shoshanna and BJ they say   it's a bold and beautiful vision of how to make  life the life that we currently have folks more   meaningful by taking an active role in designing  the life we have now I want to say can I get a man tremendously important did you get an amen so  Shoshanna BJ I have to start by trying to get   an understanding first of all how did the two  of you meet and what really facilitated the   collaboration of this book well I met BJ three  months after the death of my father and it was   a really important time for me to be meet BJ  because the wound was still fresh I was still   in the thick of grief and I was trying to make  sense of the experience I had just had and as   you said so beautifully he has a very bold and  profound vision for how to shift that experience   at the end of life and I really needed that  right then my my sister and I had just been   caregivers to my father my sister should be here  tonight she here my and we were utterly clueless   about how to navigate that phase of life I mean  we had no idea how to talk to his doctors what   care we could expect how to navigate the hospital  insurance his new wife who who was difficult at   times so just say about that is she here tonight  she is not my mother is my actual mother all right so so you know we were so clueless that on the  morning my father died we sat at the computer   in the room where he lay cold and googled what  do you do after someone dies we we didn't even   know to call the funeral home and I thought to  myself if someone like me who speaks English as   a native language and has a graduate degree cannot  figure this out there must be a lot of people who   need help with this and I think the problem is  is that we don't talk about it in this culture   you know we are under the impression that death  might be optional because if we walk 10,000 steps   a day and eat kale we're gonna be fine and so I  think a lot of us are enrolled in an involuntary   crash course and so I I thought okay this man  can help me redeem the experience I just had   because he can help me do something to help other  people through what can be a profoundly difficult   experience Wow amazing so your backgrounds really  are pretty different BJ you're a doctor you give   care inside the medical world and Shoshanna you've  been a caregiver obviously outside of medicine so   we've heard your story Shoshanna BJ how did  your personal experience shape your approach   to this book you know it's way I think way more  the personal experience than the professional   ones in some way I mean the whole reason I got  into medicine was because of my injuries and my   experience as a patient the whole idea that these  were experiences not to overcome or put behind us   or somehow forget or move beyond but actually that  became part of the fabric of a life that loss was   part of the fabric of a life of a normal life and  kind of trying to make sense of well definitely   try to make sense of my own experience is what  pushed me to medicine and then in medicine I   was gonna drop out of Medicine altogether and  like as happens when you trying to reconcile   the ideals you go into medicine with and then  the the realities of practicing medicine it's a   it's a big cliff so I was gonna drop out of and  then I stumbled onto palliative care and fell   in love with it pretty much instantaneously  was everything I was kind of hoping for the   idea that like I mentioned that loss is normal  that it's something that drives meaning and it   helps us appreciate beauty and all that stuff  so that's where I've been working from and then   there's sort of going to medical schools to find  some tricks to sort of in a way in with people   but the book and all the experience the book is  much more drawn from a personal life than as a   professional one I think sure sure and you have to  tell this story now oh oh yeah so for those of you   guys don't know so I was a sophomore in college  I was 19 and screwing around on a this is out in   New Jersey and the commuter trains run with the  wires overhead much like the the buses here in   San Francisco and I just happened to scurry up on  top we climbed was just part it was just sitting   there was not uh did not feel like a very daring  thing to do but we screwed up the ladder on top   of the Train and I had a metal watch on and when I  stood up the electricity arc to the watch and then   turned the arm and down and out the feet that  was that so very much an instant I mean it was   it was an instant but then there was a hospital  for months with the amputations were sequential   over time over weeks and months yeah that's the  basic gist of the story we got so much more to   talk about so I'll keep it at that Wow see how  he was trying to get out of telling that story   I think you guys already know it I assume you  guys are bored with this anyway no never such   an inspiration such an inspiration both of you so  this whole end-of-life thing is pretty big deal I   mean it's it's really challenging to contemplate  the work that we do in the communities is trying   to bridge health systems with community members  so medical I hate to say vs. because we're not   against each other we need each other hmm but it's  two different worlds and so what do you all say   should we exactly be thinking about as relates  to end-of-life advanced illness serious chronic   illnesses wow it's a big question and there's a  lot to think about I always like to get to the   very personal thing first which is are you just  showing up in your life you know are you putting   down your phone and looking the person you're  talking to in the eye or saying goodbye like   you really mean it because none of us ever really  know you know so just the being able to show up   and be present in your life I think is is a big  reason why we wrote this book because we want   people to think through these issues but there's  also a lot of a lot of messes that we humans tend   to leave behind we leave behind a material mess  and then we leave behind an emotional mess and   the material stuff in a way is easier you know  a lot of us have homes full of stuff that we   accumulate over a lifetime and we hold on to it  but the fact is is that the people who love us   then have to go through it after we're gone and  that can be a really painful exercise it did that   in my dad Maya and I did that in our dad's house  so why are you holding onto all that stuff the   Swedes actually have a word for death cleaning  it's like DOS deadening or something like that   and and they actually as they age go through this  process of just kind of looking through everything   they've accumulated and thinking through what  can i what can i lose and get rid of before I   leave this earth and the other material ms is is  that you know just our paperwork and our stuff   is everywhere so you know does anyone in your life  have access to your passwords can they access your   computer and your phone so if you die they can  you know help shutdown your life all those things   we just don't think about and then there's the  more important stuff which is the emotional mess   and that's a little bit more difficult to sort  through but when you think about it if you knew   that you were gonna die tomorrow would you still  be holding on to those grudges would you have you   healed the old wounds with people that you love  in your life what would your regrets be if you   knew that you were going and working through  some of that stuff is so important we have a   friend IRA byock a palliative care physician who  has this beautiful framework he uses called the   four things that matter most to say to someone  before you go and they are please forgive me I   forgive you thank you and I love you and saying  those things can really unburden the people who   love you and we actually interviewed IRA for the  book and we asked him is there anything else since   you published that book that you would add to  that list of four things and he said actually   there is I have I've talked to 60-year old men  who are still carrying around grief that their   parent never said to them I'm so proud of you and  the the incredible importance of words and just   saying that to someone they carry that forward  throughout life so think about think about how   you can give people that gift mm love it CJ yes  what are your thoughts around that question it's   a big thing to contemplate mm-hmm what would  you say we need to be thinking about well so   and part of the part of the dance that Shoshana  avender this is finding our the compliments in   the way we approach things in different pieces  of the book come from different pieces of us   but for me so I kind of quickly go to discern  not so obviously practical things like I love   sort of the framework of it it's I think it's  I think my answer your question is I think we   just have to kind of come to terms with the fact  that we do in fact die like that start there you   know start with the idea that time is precious  and other things flow from that I think what's   normal especially these days it's I don't know  there's been a time in history where it's been   easier to be distracted I mean we're just so many  things pulling us away from our basic nature so   many things that eat up our time so it actually  is a real thing to remind yourself that time is   precious that you're not here forever and not in  this body anyway so for me it just really kind of   flows from that and once you once you wrap your  head around that or at least practice wrapping   your head around that then all of a sudden you  know it's a little easier perhaps to forgive each   other and yourself you know all of a sudden as  you and I've talks in about you know then all of   a sudden you realize how much you have in common  with everybody on the planet and everyone who's   ever lived that the fact that we are mortal and we  have to know that we're mortal that is a that is a   real bond between humans and so then therefore  compassion flows and kindness flows much more   easily and for me like my favorite you know what  I love about it is the fact that time is short or   precious compels me to try bell's me to get past  my fear and it also lets so that's great gets me   to try things and it also softens the blow if  I if I fail because it's not like a show point   it's not like if you get in the lock and the key  just so you you you get a pass and you get to live   forever that's not that's not on the table that's  not the math so no matter what you do the end is   sort of set so it's really all about how you get  there and then failure loses its its its grip at   least for me does mmm I love BJ's phrase you can't  fail at death like this is the one yeah I really   find really useful and I mean honestly really  super useful because I don't like failing very   much that's something I think it practicing and is  actually pretty useful 30 um but it is very nice   to know that I'm not gonna screw up I got a good  point show us about the book like there's kind of   a couple messages in the book one is reassurance  you know that we've been doing this a long time   that there's something in us that knows how to  die you know on some level we have to kind of   get out of the way of ourselves and there's all  sorts of things that we've injected into the mix   through our systems and that are not particularly  intuitive and actually do require some planning   you kind of can't just let mother nature get  you there so there's sort of two messages on   that point absolutely I don't know about you all  but I am really impressed with this audience and   the size and the response of is a relation to  this incredible subject matter of course here   in the United States folks don't really like to  talk about death but here we are talking about a   subject that's tremendously important but I  love the fact that both of you embrace life   and facing living life to the fullest and living  life with purpose and meaning and attention ality   I think that says so much about both of you that  is tremendous and it really brings me to my next   question because I am thoroughly impressed with  the fact that both of you bring not only your   personal but also your professional perspectives  as relates to life and living and meaning and this   whole life issue of dying what I'd like to know  is though what are your thoughts about individual   preferences as it relates to race and spirituality  and topics around this subject for folks that   don't look like you or don't have the backgrounds  that you folks do why would someone of a different   background be interested in reading your book  that's a really good question well I would first   say that you know this truly is our one universal  experience I mean all of us are going to the same   place regardless of race or creed in that way  it really unites us but you know there are a   lot of cultural differences in terms of how people  think about death and think about medicine and the   healthcare industry you know we know that there's  a lot of mistrust in some cultures and of medicine   of doctors and a feeling that there's still very  strong institutionalized racism and I know that   can make a difference in terms of especially  electing a hospice and BJ can speak a lot more   to this so those things are real and we don't  want to underplay those things but we do hope   that the advice we give in the book is really  for everyone because it's about being a human   being and how you face mortality as a human being  regardless of what you look like and what you   believe and BJ and I are both pretty enthusiastic  agnostics get an amen thank you but you know that   that doesn't mean that we are not spiritual in our  own ways and we we actually wanted to hold a lot   of space for people who for whom their faith and  their spirituality is key in this conversation I   mean certainly I can say that when my dad died  I felt great relief going back to my Jewish   community and saying Kaddish for him which is the  prayer for the dead and just feeling held by that   community and and also carrying that forward you  know I think that you I'm married to a Catholic   so so I'm gonna be the person who's gonna carry  that tradition forward in our family and that's   my bloodline and I did feel this sense of kind of  just that that that connection to generations past   and generations forward and how when one person  dies you carry forward the values and the beliefs   and try not to cry on stage here became really  important to me that's beautiful yeah I think   you bring a really important point we want us to  acknowledge first of all in the field of hospice   and palliative care our colleagues here in room  with us well look at us I mean we're a pretty   Caucasian crowd who are sort of self selecting  and leaning into this subject hospice world is   largely Caucasian I mean that we've got a long  way to go and the subject you know it was way more   interesting than our medical model would have than  any one race or one cultures viewpoint I mean oh   wait the cultures I mean the the subjects were way  more interesting than we've yet done a justice so   one thing we tried to do in the book is not is to  be transparent like you said seem like we're not   pretending to speak for everybody we are trying  to speak to universal themes and for us one of the   challenges in the book was to make space make room  for anything and everyone to feel what they need   to feel rather than try to pretend to speak to a  particular faith tradition we speak to the need   for faith or the power of faith and we're trying  to speak to issues that for most of us are the   thing that evinces faith in the first place so try  to kind of get underneath it with probably miss   mixed success and are another one of our caveats  of course is it's a beginner's guide to the answer   there's plenty room for other books and as really  is an invitation intermediate good yeah I know and   it's an invitation because everyone should have  access point to this subject this is not we are   not experts and you guys should be learning from  us this is something we're dog trying to share   and make space for more than anything mm-hmm I  often say death is a great equalizer mmm I mean   we're all going that direction no matter what  our background our perspective and frankly I   think it can be the kind of subject if we really  embrace it that can really bring people together   mmm so I'm excited about this book for a number of  reasons and one of them I think is the opportunity   for people across races and backgrounds and  generations and perspectives to say nice to talk   about it and so I'm really thrilled about that so  I want to personally thank you all for the labor   of love it means so much and I know our audience  is going to absolutely love love love this book   so my next question is how can we better support  loved ones who are going through chronic illness   hospital stage hospital stays particularly when we  have non-medical clinical people again I have to   go back to that issue because it's often in this  complicated clinical setting am i right you know   hospital settings you know large percentages  of people experience the ICU and end-of-life   in hospital settings while we know people say 70  some-odd present folks say they'd rather pass away   at home mm-hmm but how do we better support our  loved ones we're dealing with chronic illnesses   and advanced illness yeah that's a great I you  know what I found was the challenge of just   showing up and being there for my father and for  other people in my life you've been sick you know   we're so crazed in today's modern world were so  busy and I remember being at my father's house and   thinking I have a million things tugging on Miss  Lee it I have hungry kids I have a sink full of   dishes I have a million things that are calling me  from work and you know my mind is saying to myself   don't just sit there do something and yet when  you become a caregiver that phrase really becomes   inverted and it's don't just do something sit  there you know sit with the person who's suffering   bear witness sometimes just sitting on the couch  with my dad and holding hands completely silently   was was the best care that I could provide and he  didn't have any words left he couldn't communicate   anymore so that was of no use to us and he had  been a very intellectual man so in a way there   was a new intimacy that opened up between us when  I could just sit there with him and hold his hand   and keep him from slipping into oblivion alone so  I think people forget that that people don't need   to be fixed necessarily they need solutions they  don't need you to tell them about your aunt who's   suffering too or you know like people just want  to be listened to and and want someone there and   the other thing is is that you know oftentimes  when someone's sick you'll get a lot of offers   for help what people will say just call me if you  need anything and the problem with that of course   is it shifts the burden of figuring out what they  need to the person who's sick or dying right so   then suddenly they on top of their illness they  they have to figure out what they need and how to   delegate that so we give a lot of help in the  book about how do you how do you help help be   helpful so you know how do you like choose someone  that can delegate different tasks to caregivers so   if you have 10 friends who've offered help you  want to take advantage of that but you kind of   need to anoint someone to be the delegator of  that help and to say ok you're doing a load   of laundry you're going to get dinner you know  you're gonna drive her to the hospital and that   is a huge relief for the person who who's really  just struggling so we got we give lots of tips for   that cool yeah Oh answer with the old story when I  I remember my first I was in I was still in rehabs   in Chicago's in the inpatient rehab setting and  I was my first weekend pass home and my parents   lived in suburbia of Chicago and I went home I  was still using I didn't have prosthetic legs at   the time so I had a wheelchair when this big old  Everest and Jennings steel tank things hit anyway   I was at home and I was I thought I was gonna be  just overjoyed to be home cuz I had you know for   obvious reasons maybe and I found when I got that  I was deep I was really sad I mean it was a it   was a hard visit and somehow I was I was acting  I don't know pissy or moody and somehow my mom   at some point my mother said something we kind  of got a little heated and my mom said you know   this accident happened - and I had an adrenaline  surge that I had no I did not see coming it was   so spontaneous ice got out of my chair onto my  stumps stood up on my stumps that weren't this   is not a comfortable enterprise but I was such  I was livid and I literally took my one arm and   picked up the steel chair and hocked it across the  room I mean I scared her I scared myself I hadn't   I did not see that coming and the point is why I  think I had such reaction was because of course   mom was right and I was just trying to deal with  my own pain and here I had to think of oh my god   I've hurt other people with this idiot move - and  yeah I needed I needed to get there and my mother   was the best person to broach that with me but  it was really hard to take in my point is she's   right I think was so with caregivers and bridge  you know this when we're talk with patients and   families in the clinical setting is I think first  and foremost just naming how difficult it is to   be a caregiver and to name their pain I mean in a  hospital we have we have buildings erected to the   patient there's nothing much for the caregiver so  just naming that as I think very helpful and then   beyond there something that was really driven home  for me working at Zen Hospice project and kind of   coming at this from a contemplatively out was it  was naming what I had felt would come to feel as   a patient which was this the reciprocity between  caregiving and care receiving though I think it's   our language here they're giving it or receiving  it your your selfless or your selfish you're   taking or your that really that's not really  accurate that that's an oversimplification and   undermines actual joy of caregiving when you can  in one of the moments that was so powerful for me   in the hospital was when you're getting sort of  cared at and everyone's kind of throwing their   benevolence at you which is lovely but you  just sort of take it and the one of the most   powerful moments is when I when a nurse said to me  something about how she what she had learned from   my situation which she had taken herself she had  gained something it wasn't just her being selfless   that was one of the most therapeutic moments  for me to realize god it wasn't me just taking   she was getting something too so looking for the  reciprocity that you're not meant to just spend   yourself down as an act of love that actually  doesn't really help well said well said wow you   touched on some really important things both of  you and even in the discussion I couldn't help   but think about you know how do you maintain joy  mm-hmm how do you find joy first of all okay when   you're dealing with serious illnesses and you kind  of gave us some insight vjn sharing your personal   story in Shoshana as a caregiver for your dad but  I'd like you to speak a little more about joy and   hope and how about even laughter hmm I mean is  it I heard and I love here in the audience giggle   at certain points that you know we've made here  how do you find laughter in the midst of what's   tremendously trying so important yeah I mean come  on we need these moments of levity this is heavy   stuff we heard so many amazing stories in the  book from people who just like really found ways   to laugh in the most tragic of circumstances a  woman we interviewed whose father was dying of   congestive heart failure and he was on Hospice  at home and he was set up on a hospital bed in   the living room and he insisted this he was a  funny guy and he insisted that he had a huge   nude portrait of his wife right about him there  we go in the room so he also insisted on wearing   a shirt with a squirrel on it that said I'm so  old I can barely find my nuts you know administer   something to him or take his you know change his  catheter bag there he was sitting there in that   squirrel shirt under a naked mom so I mean she  says you had to laugh and she and she did and   it was awesome because it brought joy into the  during a very difficult time other friends who   we interviewed for the book sarin Francesca whose  father Len was dying of cancer and they brought   him home and they were taking care of him and he  kind of joined in the fun and they would leave   sticky notes for each other around the house  like constipated man in his natural environment   and you know they were just like go around and  find these weird jokes around the house and and   it was just these little subtle moments that that  allowed them to acknowledge that they were all in   this [ __ ] together and they had to just laugh  and sometimes when when they when they couldn't   cry anymore yeah Wow I think yeah that and maybe  it's oh I may not work for you do some of these   are sort of I can imagine rolling some eyes but  I I do feel like in a way pain if if it doesn't   I for me it's pain such up to feel joy or maybe  better said it sets up the need for joy like it's   really essential it's not on recreational thing  on the side it's really essential and in a way   when you're getting sick and your life's xx part  your everything's just blowing up and that can   have and there's some real absurdity absurdity  to that um and I think for all of us the queue   is so I say the one answer I think is that this  sort of backdrop is exactly what makes joy pop   is the foil so yeah I guess there's more to say  that but I'll stop cuz again there's more this   is really I think a tremendously important topic  as it relates to this subject and that has to do   with caregivers and you've mentioned it both  Shoshanna and nbj you know caregiver burden   is really real mm-hmm having been a caregiver as  well for my dad and helped with my brother older   brother who have actually passed away about a year  ago almost today you know this whole feeling of   being overwhelmed and you're feeling overworked  and literally forgetting your own needs because   you're so interested in the well-being of that  person that you care about and that you love so   so what's the most important thing for families  and caregivers as it relates to your own personal   experiences and what you see every day what should  they do and really helping themselves through the   process yeah that's it's such a great question I  mean there are 40 million caregivers in America   alone and it's an invisible workforce and they  suffer with you know emotional burden they suffer   physical burdens or just like getting sick and  having a higher morbidity rate themselves because   the work is so hard they have an opportunity  cost of having to drop out of the workforce and   losing you know money when they desperately  need money to help get more help so it is a   massive problem a massive systems design problem  I would say in this country and you know it's so   interesting that like we confer so much dignity  upon caregivers who are taking care of newborns   right like parents have the most honorable and  beautiful job raising these completely dependant   infants and we see that as a beautiful service  and we give people leave and we give them space   to do that and yet at the other end of life it  just becomes this invisible service you know   both the person who dies becomes invisible because  they're no longer productive and the person who's   taking care of that person is invisible so that  really needs to shift and we need to do a lot of   work on that and I'm hoping my company I do can  can help with this but there are a lot of people   out there who are thinking about this about how we  solve this profound systems problem for caregivers you DJ notes well I like to just listen mood  to his name state the obvious so like I think   there's any caregiver an audience will know  I think the the job in part or in large part   particularly cuz in the systems issues bro shows  it's this may be score to the work is activism or   advocacy and I think that's a really important  thing to name because you are gonna be you can   bumping up against all sorts of things nature  made sufferings but all these inane manmade   sufferings and it's it's it's crazy making and  it's consuming and I think it's really powerful   or important to name this idea that you're an  advocate or even an activist because you are   you know you are keeping the gate you are trying  to change something you're trying to change the   situation that without you there would be much  worse so naming that also helps us at the end of   the day to be like to sort of take some pride and  all that you're actually trying to do it's really   thankless work its unending work it's unsatisfying  that way there's not really much closure to it but   at least you have a frame for yourself and I think  that activism framework actually helps and kind   of puts you in a nice place so I'm gonna dive  into something that I saw consistently in this   book and it really opened my eyes so I'm going  straight there okay mmm-hmm let's do it alright   when I die file where did that come from tell  me more about that what is that notion behind   it and what goes in this when I die file you  got to help us out on that one well first of   all when we conceived with this I originally  called it the if I die file and aeneas like if I'm writing this book have a hard time when I died  so yeah there's that so the when I die file we see   is a really critical piece of preparing and it  gets back to your original question of how we   think about the end of life because it's such a  big topic but this gets it really down to brass   tacks and really pragmatic stuff so there's  like 20 things you have to put in this file   and they're all in the book but I'll just name  a few and one is your advance health healthcare   directive which is essential right and anyone  in this audience who doesn't have one I hope   you leave this conversation and look into it  because what it does is it means that if you   walk out of here and get hit by a bus and end  up in a hospital and can't speak for yourself   you have you have enlisted someone as a trusted  agent to speak for you someone who can show up   at the bedside and help navigate your care and  that is really essential so that needs to be in   there for sure and then as I said before all of  your logins and passwords you know where do you   bank where you know where did you have your your  stuff that stuff needs to be in there so that your   family doesn't have to literally go through your  mail and figure out you know who what's the name   of your lawyer you know where did you bank what  subscriptions do you have what what you know what   are your what do I have to do to file your taxes  there's a million little things that you have   to deal with leaner shutting down a life and it  took my sister and I two years to do that for my   dad it's like a full-time job so that's that's a  huge thing to have in there and then I'd say it's   just a softer thing is is there something that  you can put in there that really is going to be   meaningful to your loved ones to carry forward so  is there like a recipe that your family loved that   you cooked all the time that they wouldn't know  where to find or could you write a letter to the   people you love and just say the things that you  need to say to them those things are things that   they will carry for and I'm actually I'm looking  at somewhere in the front row here named Frisch   who is a letter midwife she's she's someone  who actually sits with people who are dying   and has them write letters to someone they love  and it is it was an incredibly profound exercise   for me to sit with you fresh and do that and I  ended up writing a letter to my daughter which   is in the book and you know like she asked me the  first question I'm like immediately it was hard   to get through but at the end of it I was so  relieved to have this thing that I could leave   for my daughter and know that she would find it  and and have those words so put that near when   I die file2 so important so important so in five  minutes we'll be taking questions from Bruce and   Shoshanna and we ask that you please line up at  the microphone in the back of the room if you'd   like to ask a question in the meantime we'll  keep talking how about that BJ did you have   any comments you want to add about that when I  die file I would yeah you can it's not I mean   some of this stuff is really kind of frankly a  to-do list I don't want to we can't make it sound   otherwise but there's also a huge opportunity in  this so you can you know you can personalize your   funeral you can like what music you want played  you know what burial instructions there's care   and handling instructions in the book it shows  did a beautiful job in this chapter I mean like   little things like how do you like your coffee  you know like if you're sitting at your deathbed   how do you want to be treated how do you want  to be positioned in bed what music do you want   playing all sorts of little wonderful details  so it can be fun to kind of take an inventory   of what affects your city what reflects you and  affects your experience and get that into the one   I died file too do not it's all not all drudgery  all right mm-hmm that's cool so before we get to   the questions from our audience I wanted to ask  what do you hope readers to take away from this   book I mean I guess it's a nice sort of simple  take away is a lot of things we've talked about   in terms of this subject uniting us and to feel  you know this body's gonna die yes but life will   go on and as soon as you can sort of dissolve your  ego and take pleasure and other people's Joy's and   and see life outside of yourself the better you'll  do but I guess in a some more simple pithy way I   would just say I think the bottom line is a dying  doesn't have to be as hard as we fear it to be yes and I think what I hope people will take  away is that you can actually be an active   designer of this part of your life and you know  I speak in design language so forgive me but you   don't have to be a passive part of this part of  life and I think I didn't understand this when   my dad died you know I thought you just kind  of hand yourself over to doctors and hope for   the best and we decided every other part of our  life you know we design where we're gonna work   and who we end up with and we're going to live  and yet when it comes to this part of life we   just kind of like leave it up to fate and that  just seems wrong to me so I'm hoping that people   after reading the book will feel like they can  actually lean into this experience and be an   active participant and feel some real agency in  it like I'm I'm a co-creator of my life here so   and that's important to me and I and I know I now  know how to do that fabulous what I hear from both   of you is practicality comprehensiveness and how  about this great compassion great compassion sin   absolutely thank you yeah yeah finally got that  a man finally so now we're going to the audience   please keep your questions short we'd like for you  to end your questions with a question mark please   so let's hear the first question so thank you all  for your time this evening I just like to pick   up on that last point of being in control this  conversation side note you should sell your book   to every wealth management advisor because it's a  great conversation that they should all be having   with their clients but of that to being control  the conversation do you talk at all about kind   of self-directed suicide so how do you have that  conversation at what what are the points where cut   me off I don't want to be here anymore and how  do you have that conversation I've had it with   my girlfriends and friends so they know when to  put this up in my applesauce but I'd love to hear   your expertise thank you well thanks for that's  a that's big big subject thanks for bringing it   up it's on a lot of people's minds I just sort of  I'll come at it a few different ways one is so the   language now around this is called we called aid  in dying or medically assisted dying and you guys   probably know California is one of the states and  maybe there are up to a dozen or so now seven not   quite a dozen seven so but there is something of  a movement around sort of us you know the right to   die movement and it's state-by-state Oregon was  a first in 1997 California has been they go for   a few years but anyway there's a big process to  it and you essentially you need to be terminally   ill and you need to prove that you're not that  you're of sound mind and there's a waiting period   and there's all this structure but the end result  if you get through that structures you can get a   prescription for a lethal dose of medication  to end your life explicitly to end your life   so this is a huge subject and people feel very  strongly about it in all erections so I part of   what I would just simply say is an invitation for  everyone here to think about what what they would   like it's worth noting a few things so one is  it's a symbolically as a huge huge issue it has   implications for our systems our justice system  our healthcare system etc a lot of doctors I know   don't participate in this and you can opt out as a  physician they'll say hey okay sure my patient has   the right it's their body but I can't participate  it is a big thing to ask someone to participating   in ending your life it's true so it's a huge  symbolic issue but it's still practically a   pretty small one and Oregon for example where all  the data is from it's about 0.4% of deaths per   year so it's a relatively small number practically  but one thing that's really interesting to note   is a lot of people who get that lethal dose of  medication never actually use it and back to   the origin this question that the therapy is just  kind of knowing it's you have a way out if things   get too hard you've got this parachute in the  medicine chest and that seems to be so much of   its therapeutic value and therefore it often is  never actually used so so that's sort of the sort   of legal structure around what our states are  providing for us now it's still hotly debated   subject I guess I would also just encourage  us all and I you know it's also a part of the   advanced care planning conversation which is we're  asked to kind of imagine how we would feel where   we're in some future state now I in the disability  world it's a huge kind of issue like a lot of us   who have become disabled if you would ask this  one where a able-bodied could you live without   three limbs or could you live as quadriplegia  or whatever we would say hell no I wouldn't   want that but then when we're in those shoes we  feel pretty different so it's worth noting that   this is a very dynamic subject and our feelings  about our own death and our what we're able to   live with and not live with is a dynamic thing  so leave yourself plenty of room to change your   mind but most importantly is keep talking about it  with someone someone that can chart you over time   anyway there's there's so much to say about this  particular subject but that's a that's an answer   can I just add one thing I love the question  I love that you said my girlfriend's gonna put   something in my applesauce because I think that  there's also I think another thing that was a   real education for me was understanding that you  can have some say in this even if you're not using   an aid and Dyan program so you know knowing what I  now know having seen my father die of dementia and   having not asked him those questions beforehand  you know what does quality of life look like for   you if you can no longer recognize us do you still  want to live you know if you can no longer read   the four newspapers that you have that you read  every morning this your life still feel like it   has the quality that you want and so what I've now  done as it's turned around and written some pretty   clear instructions for my own family and said look  if I can no longer recognize you and I can't eat   a bagel and I can't go to the bathroom by myself  I want you to let whatever little virus comes my   way just progress naturally you know and if I  get pneumonia I don't want it I don't want you   to call 9-1-1 I don't want to go to the hospital I  want you to keep me comfortable and just let that   progress and that there you know there are people  who can help you do that you know if you if you   elect Hospice soon enough that will be supported  and the problem is is that people end up electing   a hospice so late in the game that they they can't  fulfill those instructions you know my dad was on   hospice for like two days so anyway there's a lot  you can actually do to make sure that you have the   quality of life you want until you die maybe I  can even have one more thing cuz this brings up   somebody's like to see you guys know you don't  ever known of us we all have the right to turn   down any medical intervention that's as long as  you're sound mind you can got that so you on the   spectrum foam-like living at all cost to wanting  to hasten death there's this grave ass zone of   palliation of basically of getting out of the way  of death letting it come when it's gonna come and   that's always within our rights yes next question  yes I am Reverend dr. Charlotte Meyers and I work   for one of the largest hospice providers that  are here in the Bay Area the question that you   were just speaking to the end of life option  is one in which you have to be able to take   the medications yourself so yes you do have to  speak with your doctor you have three different   on three different times that you can make that  choice with your doctor and then it's really up   to you to make that decision about ending your  life but in hospice care the thing I wanted to   share with you is that there are five of us on  every patients team so there is actually a team   of people that takes care of people who are who  have chosen to enter into hospice and when you   choose to enter into hospice you are making the  decision that you no longer will have medical   treatment you have decided as you were saying  that you will accept death as it comes but what   I specifically wanted to speak to is the issue of  spiritual care and that spiritual care counseling   and grief counseling our clinical positions in the  hospice system and I don't think grief counseling   and the standards of grief counseling in this is a  very good book by the way and I'm not criticizing   and I'm simply saying I don't think it's here  and then the other thing is the spiritual care   on your team you have a doctor a nurse you have  a chaplain a social worker and you have a home   health aide so you have those five people that  are taking care of you the spiritual care is   every bit as important as what the nurses do and  what the doctors do okay just wanted to share that that'll get another amen hello thanks for taking  my question it will be a question I promise so I   I live in Oakland where we're lucky to have  decriminalization of some plant medicines   it's very powerful to sit with people who get to  practice dying and I'm wondering in this wonderful   very heavy book which I haven't read yet if  there's the the practical side of helping people   who are alive and well deal with the end-of-life  anxiety mmm good one there's a there is there's   a there's a a chapter on coping which is really  about how it danced with fear and and we bounce   off it as humans and it's sort of the mother  of all fears and and it's really unlike so   many other sort of fears or phobias which the the  fear of death is as far as we can tell really an   invitation to come closer to it actually not run  away from it now that's sort of generally where   the therapy begins but yeah there's all sorts of  ways there are all sorts of I don't know that we   we're not trying to necessarily take away fear  or any feeling but we counterpoint it we buffer   it and that's I think how we dance with fear and  very often if you do that if you accept that you   that fear is part of the mix sometimes it's it  loses its its teeth if fear kind of becomes a   companion among others of feeling among others  then it loses its punch and that's something to   work with that's something to diffuse over time  and you reference plant-based medicines and the   resurgence of psychedelic assisted therapy and  psilocybin I mean it's a very interesting time   right now on this front and I think those as you  say those offer a way to practice discombobulating   practice coming apart you know in a way and  so there are chemicals that can be helpful to   that end but really if you're paying attention  and I mean death is everywhere and we're these   were held together with duct tape and toothpicks  generally as people and you know if you're really   paying attention you know you're falling apart and  coming together all the time and we're very fluid   adaptive critters so part of its just sort of open  your eyes to that D shaming the fear so you don't   hate yourself for being afraid and then kind of  work with it from there and yes it's in the book hi first of all thanks a lot for the beautiful  insights you've been sharing with us so I'm part   of those type of people that are not very  comfortable with letting go and I'm very   worried that when my parents will reach that  point that apparently we will all reach at a   moment on another we might have a disagreement  and they might say if I reach that point let me   go which as of today I'll be like yeah sure of  course I'll respect your will but on the moment   emotion might kind of take over and I'd be like  no no no no no I'm not ready I'm not ready I'm   not ready so I don't know if you could have like  any advice or insight or anything you could share   Thanks yeah that I mean that's a big one and we  none of us are comfortable with letting go and   there were some really interesting stories that  we heard when we wrote this book about that exact   experience our friend Rebecca sue door who's also  in in medicine had a moment when she had to have   this conversation with her grandparents and she  her father was was ailing and getting frail and   so she said you know I'm sorry her grandfather  so she said grandpa I want to have this with you   about you know what you want at the end of life  and he was super clear about this he was like   look I've had a great life I've had a beautiful  marriage with your grandma I feel very fulfilled   I don't want any heroics you know no no pumping  my chest don't try to revive me just when my time   comes just let me go and then she turned to her  grandmother and she said grandma did you hear   what grandpa just said and grandma said yes I did  and she said well how do you feel about that she   said nope she said I want them to do everything  possible because just a minute more with him is   so important to me and then Rebecca turn back to  Grandpa and she said did you hear what grandma   just said and grandpa said yes I did and she  said well how do you feel about that he said   whatever she wants we exist in relationships  were social beasts sometimes what our spouse   or our sister or brother or our children want  is more important to us than what we want and   our and our decisions change it's an incredibly  dynamic system we're living in so I'd say just   like allow space for that things are going to  change and you know you may find it easier to   let go if you see your parents suffering you just  you can't anticipate what that moment is going   to hold so just allow it to be hello thank you so  much for the beautiful conversation I have gotten   a lot of peace from studying how other cultures  think about death who might have a more healthy   relationship with mortality than our culture does  and just for instance like Dia de los Muertos it's   I had just never seen death portrayed in such a  celebratory way for and it made me realize there   are other ways to to sort of approach the idea of  death sorry I'm breaking my own rule here it's a   long question but I I guess to bring it back to  to a question about our own society how do you   think we can sort of change the conversation  and change the perspective on death to have   a healthier relationship with it here aside from  writing a beautiful book that's very approachable   hmm well start yeah thank you but I mean we got  a long way to go here and I think it's one of the   for me how the u.s. handles aging illness death is  if it was a real tell it's it sort of proves that   we are pretty young country countries have been  as such around longer tend to do things a little   differently and what's the gist I mean I think  we I if you hold the view that death and life are   at odds are opposed then you're gonna be you're  kind of buying yourself that Waring approach to   the subject and for some folks that's great you  know that's just I don't wanna we're not here   to convince anybody to change their mind or do  differently or somehow love death that's certainly   not the deal here but we would hope would be that  we love life enough to include the whole shooting   match of it so I think as soon as this country  and perhaps nights like this I mean the fact that   you guys all came out for a conversation like this  you know this is beautiful and this is relatively   novel and relatively new so maybe things are  changing but I think first let's let's maybe   at least for me it's very instructive to link  living and dying that they're part of this that's   a package deal you don't get one without the other  and so once you sort of set that as your view of   reality or our healthcare system really needs  to do this the death is not at odds with living   and once you get that once you get that wrap your  head around that then so then our systems and our   structures and our policies can so again an answer  to your question it's a long game but I think   we're in the midst of it this is our last audience  question Thank You PJ and Shona and everyone my   question is I just grade from college and a lot  of young kids like me live Yolo you only live once   but how do young people Kip death in mind like  Yoda you only die once how do we actually keep   that mindset hmm but still living thriving can  we just all initiate yo dough tonight yo dough   is becoming a hashtag that's a great question you  know so it's always too early to think about this   stuff until it's too late and you know there's  so many life cycle moments when you can start   thinking about this so for example when you get  your driver's license and you go to the DMV and   it's the first time that you're asked do I want  to donate my organs in the case of death that's a   pretty important decision right and everyone says  that they want to be an organ donor and then very   few people sign up for it so that's a beautiful  moment when people turn 16 to start thinking about   it you know there's Jessica's itter who is another  Bay Area palliative care physician an ER doc talks   about why don't we have death ed along with sex  ed you know why shouldn't we talk about all the   important stuff in life so that's one thing I  think it's also important to note that when you   turn 18 you are then a legal adult and because of  HIPAA privacy laws your parents and your closest   kin no longer have access to your medical records  so you know we heard a story about a woman whose   son tragically at a frat party fell out a window  and you know became brain-damaged and she had a   hard time getting any information from the docs  about his medical records because she was not she   had not been appointed his health care agent even  as his mother so that's another critical moment   so when you turn 18 with your kids or when they  turn 18 with your kids you should have them make   you their their health care agent so there are  all these moments throughout life when we can   start thinking about it when you have a family  you know you got to do well in trust because at   that moment when you have children you have to  think about who will be a guardian to them who   will take care of them if you're no longer there  so there are all these critical moments to think   about it and I really appreciate you bringing  that up because I think young people do feel   invincible and and tend to not think about these  things but it's it would be great if they did I   mean I think that's also why this subject is very  often a lot of people come to this subject through   meditation and vice versa somehow they're linked  and I think I think why the link is just basically   around awareness I don't so however old or young  you may be again if you're paying attention death   is everywhere that leaf falling check the bugs  on your windshield and you are it's just all   over the place loss is in you death of cells  cutting your nails you name it I mean there's   this it's there's ends and beginnings happen and  all around you so another way in maybe is simply   meditation just simply being aware of life as  it is that can be very basic place to start wonderful conversations so folks were at the point  in our time together that we look at the wonderful   informed traditional question we ask all speakers  this important question so here we go what is your   60 second idea to change the whole world not at  all okay okay so I would say spend time with the   dine and spend time with the sick that has been  a life-changing moment for me so whether that's   volunteering for hospice or just spending time  with the people in your life who are are sick   or dying there is a moment of perspective  that happens at the bedside that is really   life-changing and you know we just celebrated  the 50th anniversary of the moon landing and I'm   reminded of the astronaut experience you know when  they rocketed out into orbit and for the first   time saw this floating blue marble and took a  picture of it and how that radically changed their   perspective and our perspective as human beings  about this little planet we live on you know and   and astronauts will talk about how they thought  to themselves how could we possibly be at war   with each other how can we possibly be unkind to  each other you know why aren't we taking care of   each other and this planet and that perspectival  shift and that kind of cosmic right-sizing really   happens when you watch someone die too you  know you realize what matters it really is   all the [ __ ] that doesn't matter and you you  you really rebalance so spend some time with the   dying that's my 60 second idea all right mine is  no new ideas like a moratorium on no new stuff no   innovation like let's actually work with all that  we have and already know that we just kind of keep   ignoring and trying to reinvent wheels like can  you imagine five year moratorium no new anything Wow Thank You Shoshana Thank You BJ what an  exciting evening to hear from these incredible   people can we just give them another hand please  please join them in the lounge thank you there   will be a signing of the book please join them in  the lounge for this incredible book a beginner's   guide to the end practical advice for living  life and facing death good night thank you soon

Channel: Commonwealth Club of California

Views: 2,388

Rating: 4.8666668 out of 5

Keywords: A BEGINNER'S GUIDE TO THE END OF LIFE, B.J. Miller, Shoshana Berge, INFORUM, UCSF, IDEO, Commonwealth Club, San Francisco

Id: K8FDhIAUmkI

Length: 68min 59sec (4139 seconds)

Published: Mon Jul 29 2019