A Beginner’s Guide to the End | JCCSF

[Applause] hi everybody thank you so much for being here it's such a treat to partially see you under those lights and it's really wonderful to be on stage tonight with you two I'm totally thrilled I love your beautiful wise funny book I wanted to start with sort of a general question so Abraham brookey's the physician writer who wrote cutting for stone who many of you maybe also loved said something so nice about this book he said I'll just read a straight from the cover this is a book that every family should have the equivalent of dr. Spock but for this other phase of life and I love that and I'm wondering if maybe together maybe starting with you Shoshanna you could just tell us kind of a bit about who you are and ultimately what this book is and like who it's for hmm okay Wow maybe let me just ask you this yeah why don't you tell me what the book is and who it's for and then I want to know what made you to come together to write it okay so the book is kind of for everyone I mean we're all going to the same place and I think part of the inception of the book was feeling like there's no operating instructions there's no manual for this phase of life and we always used the correlative of What to Expect When You're Expecting well you did yeah like right there's this great I mean okay it's not that great it's kind of fear-mongering and awful and just you know like if you don't your baby but so but we always did think like there's so much instruction and care and foresight and thought put into bringing new life into the world right and people were hungry for that book at the time yeah I mean it is like the you know after like TV Guide the best-selling thing of all time I think 9 d I think 90% of pregnant women read that book Wow which is incredible and we always say about our book that it has a hundred percent market penetration so I think you know we we started out thinking there needs to be instructions for this other half of life does that ring true to you yeah that sounds about right yeah I guess from my point of view and when Sean I asked if we want to write this book together and it's a pretty quick yes for a lot of reasons that show she's already said but the basic gist and you probably know this clinically when you definitely know this Lucy clinically where you just see situations that don't have to be so hard you know over and over again for systems issues or a lack of the languaging or a concern for shame or whatever else makes hard situations even harder and but that's written all over the place with chronic illness and terminal illness and so I think that was the impulse was to sort of see if we could have a level setting raise the floor a little bit so we all had sort of a basic gist of what to think through so they didn't have to be quite so hard I just want to tell you in the audience the kinds of things that are in this book so there are things like the nuts and bolts of illness are dying like having a folder in your house called when I die they literally fit wrote about that how to talk about dying how to cope including some really beautiful writing and reflections and philosophy and suggestions about everything from mindfulness to psychedelics finances hospital hacks love and sex and relationships regret the question of can I choose to die and a lot more than that and the tonus really I'm sorry I sound like an up here selling your book but I'd like kind of I think you should get in it's a gift and very useful it arrived for a time um so tell us just quickly how you came to know each other and like it sounded like you solicited BJ you that's my husband so yes yes that is true so what happened was my father had just died and I had just started working at this dreamy place called IDEO here in San Francisco which is a design and innovation firm and BJ and I were assigned to this project to kind of rebrand hospice if you will like hospice has such a bad rap and so much baggage and you know BJ has said that people often think that it is the place that kills you or that you go to hospice to die and it's a death sentence and you know BJ at the time was the executive director of the sudden hospice beautiful center here in San Francisco and he wanted to just amplify that message that not only does it not kill you but in fact it is the greatest suite of care yeah that you can get at the end of life and it's very it's a Medicare benefit I mean incredible so so let me just set the scene here so I do as is its want to do built a like igloo inside of our offices to have this conversation this kickoff conversation about the end of life and my colleagues were teasing us that we had created a death yurt inside inside the office and BJ came to the office and we walked through this tunnel and there was like flickering light above and then it was a candle that stage and about 10 of us sat in this death yurt and had a conversation about about the end of life and everyone was asked how they would like the end of their life to look and there were some great reveries about this you know like I want to be I'm an iceberg alone and Iceland and you can almost hear the soundtrack starting and and you know people had playlists and they had you know they had some really interesting very highly designed ways of dying and I'm sitting there thinking wow this is not at all what death looked like and you were fresh freshly grieving years yeah yeah I mean this is not what it looked like when I was sitting in my sister's old bedroom with my father who had been you know really out of it for quite a long time it's just you know it's it's quiet and it's not always pretty and it's it's hard and so Vijay came in with this very beautiful and bold vision for how to kind of grapple with that experience in a different way how to come to it and approach it and put your arms around it in a different way and that just really lit me up when I was in the midst of grief and also just a lot of confusion like literally my sister and I when my dad died - sat down at the computer in his room and googled what do you do when someone dies and we were totally clueless totally so when I met EJ and and we embarked on this project it became very clear to me that a lot of people probably need help with this do you remember what you said in the igloo like that Roshan over 70 when you're hearing you know Shushan is there you hear this person with the iceberg idea do you remember what you were bringing in the igloo I don't remember what I was saying I remember what I was thinking because it was it was it was amazing I mean I loved going to the idea office it's just such a creative juicy place you know you feel your neurons firing just being in the building and not especially in this created sub environment it was it was a really remarkable feeling and it was so thrilled to be outside of a clinical setting to be having this conversation because I reserved sort of an inherited thing especially in Pat of care that everyone in the world in denial and no one wants to talk about this stuff and so therefore don't talk about this stuff I mean that there's a there are a lot of assumptions made and I think we keep learning the fact that denial I think is a little overplayed that there is a zeal to talk about this there's an interest if we could just sort of set the space and lend some safety to it but anyway but I remember what I was thinking so we're hearing all these these stories that were fantastic because of what I loved was hearing people thinking creatively about their death about something that otherwise is assumed to be the antithesis of creative you know and it was fascinating but I was biting my lip a little bit then finally Shoshanna says something about essentially you know well I'm sitting here feeling you know people were sharing all these service inspired feelings if she said something about well I'm saying you're feeling a lot of regret and my ears perked up because ah finally someone was sort of attending to some other gnarlier feelings too and that was a huge relief and I remember feeling very connected to her in that moment because right this is not this the idea here isn't to make this happy and elbow out all the hard feelings that would be a real mistake quite the opposite so hearing shows own the regret felt really important and and it felt really important than moving forward that she was that she wasn't a clinician because medicine gets so much the medicine assumes this subject and as we all know it's not just a medical subject and so it felt really good to work with Shawn one clinician one non-clinician I think that that seemed really important yeah it's a great pairing and I think also you're a palliative care and hospice physician and you're somebody super smart and creative who has also been a family caregiver and half of this real wisdom from that in a second I want to ask you guys if you'd be willing to read a little bit from the book but first I wanted to ask you Shoshana because I want to ask some a couple questions about advice and like the type of advice that comes through in your book maybe some specifics and then we're gonna have time to do audience questions too so if you are here with a particular question or have been thinking about something feel prepared or welcome to ask a question a little bit later in the program okay by the way guys like any questions really like this subject should should but often evokes a lot of feelings hard and otherwise so I guess it's an invitation and sometimes we forget to say that like all feelings welcome you know and any question welcome the personal and a professional pretty well entwined yeah I wanted to ask you because you you talked about regret and in the book you talk about regret and I'm wondering it doesn't even necessarily have to be about regret but in your own experience caring for your dad as he was ill with dementia what do you wish that you had known that's kind of my question and the the other alternate freezing of it would be like how has this changed the way that you would advise someone or in the future just like what did you learn so many things I think the first thing the most top-of-mind thing that we write about in the book is I spent my whole life I think up until that point thinking that the world and everyone around me needed to be fixed you know like I could be improved or like you needed to fix that it was a lot kind of both I mean I took it on myself you know like I came from a house where you know my parents have a difficult marriage and ended up in divorce and I always felt like I can fix this you know I would like go and scrub the whole kitchen and like do crazy things thinking that it would fix their marriage and I think my whole world view was that you know when people are in a truck are in trouble they need to be fixed and I think that's part of the folly of what happens as what I've seen happen in health care too that you know sometimes people just can't be fixed and when they can't be fixed certainly my father's illness was incurable at people telling you that it can be fixed and you can just do this or that leads you down this path of thinking you should always be doing more and what I found was the most profound feelings that I was actually taking care of my father we're just when they showed up you know and just didn't run from it and and wasn't constantly cycling through what more could we be doing you know do we need to go visit this specialty center you know does he need to be doing more exercise or you know we we had a doctor say to us you know you know as he tried to a yoga and you know eating a vegetarian diet and stuff like that and I'm sitting there looking at every thinking we are so far beyond that oh yeah yeah so I think that lesson of just showing up and not running from it and not fixing it and just bearing witness and being there was the most important lesson for me would you mind reading a little section that we had talked about where I think you end up talking about this kind of saying yeah what I felt like for you sure learning to do that I happen to have it right here okay being there at a certain point stanley burgers world became a very slow and quiet place just turning his head to look at me took eons we were suspended in time his doctor said he needed peace now no drama I'm not a particularly quiet or slow person so learning to be a good caregiver meant adjusting my dials and synchronizing to his pace a meal consisted of holding a straw to his lips for a full minute so he could pull a few sips then doing that again and again until an inch of the smoothie was drunk time spent together meant lying silently side by side on his bed with the TV on or sitting on the couch watching my children play in his living room that may sound easy but it was agony for me I had dirty laundry and gross grocery shopping and a sink full of dishes and hungry children holding up a sign of protest that read don't just sit there do something when you become a caregiver you learn you have to turn that phrase upside down don't just do something sit there when I could do that pour all of my attention into the small corridor between my father and me my heart was so full that it heated up my chest there was no longer any point to live anew our time with chatter none of that nagging urgency to recite recent accomplishments or to try to impress him he didn't need it his internal word processor was too broken to really get what I was saying anyway all he needed now was someone to hold his hand and not let him slip into oblivion alone thank you this is a slightly different topic but could you share what else helped you during that time and I'm particularly interested in ritual you either during the time that your dad was sick or after Dad died well that's an interesting question you know so obviously part of the function of religion is to surround you with ritual and community when hard things happen and my father was Jewish and you know I I spent my time growing up with him in synagogue and I'm not a particularly religious person but going back and saying Kaddish for him saying the mourners prayer for him was incredibly incredibly profound for me because it felt like it opened up this funnel through time and space and I was connected to him again and I remember we were doing you know so in my intro you heard that I worked on modern Judaism at I do which is like it's so crazy that I go to work and get to work on these things because they're so personal but I remember during that project it was with a local startup synagogue called the kitchen and one morning in our project space the client and all of these people just gathered around me in a circle and and held arms and said Kaddish for me at work and I completely lost it of course but it was such an such a beautiful moment to feel I could show up at work and have this circle of love and support around me I mean I I just I feel absurd even talking about this because like it's who goes to work like that like that's just it was it was an incredible thing but but I do think that ritual does help and you know we're living in a deeply unaffiliated time when people have turned away from organization for good reason there's a lot there's a lot of baggage and a lot not to like right but I do think we need to find those things again because I think that lack of community and that lack of support when you're in free fall and greed is really hard for people and it's why the church and synagogue and other places the houses of worship can be really helpful yeah I think I found that I had a similar experience actually just noticing I'm not really just either but my late husband was and I found the rituals to be so so comforting and important in a way that I had totally not expected yeah yeah Vijay would you mind telling us so you you treat very ill patients either with serious chronic diseases or our patients who are dying and would you mind telling us what you have learned from your patients watching them through that experience being with them through that experience that that ended up in the book oh yeah that you learned from patient that you totally wouldn't have known wouldn't about dying or about anything you know hmm well I think one well I happen to have one patient in the audience that I know of attempted to speak to her this woman will call her Jay she brings I mean she's the perfect example of how important humor is Jay has dealt with many things in her life and worked through tons of stuff sometimes with others much the time by herself and she is just a sort of a walking inspiration in all sorts of ways by the way she comports herself and so what every time I see Jay it's always basically we do to sit around and laugh is the bulk of the appointment yeah one way or another all the while dealing with very serious things but I suppose what the lesson of Jay and that just bears out all the time is how this is up what I love about the subject it just it forces you to to create or craft or see a bigger worldview because there's all these things to include you can't just hang out in sorrow especially with Jay she'll make you laugh and you got to come over here and you know all the time people are holding all this this huge panoply of emotions and thoughts and feelings and the sheer necessity of ambivalence that that's not a weakness or wishy-washy thinking that that in fact some ways being adult I think is measured by how many opposing thoughts and feelings you can hold it once and so that's the muscle I love that I love to exercise with my patients that they teach me about them all the time this makes me think of you have a chapter in the book I camera what it's called is called like love and sex and romance or something like that and I was so happy to see that in this type of book it's very unusual so can you tell us why you decided to put that in there well you just you've named it because it's not in so much of the conversation and for all sorts of reasons I suppose but one way or another and another colleague of mine a woman named Karen skanky was also here tonight and I've gotten to work with her for many many years and she's done all sorts of amazing work including work and it's like all psychotherapy and sex therapy then she would point out early on and in my work where you know the the UCSF we call the palliative care outpatient program we call this symptom management service and that's his historical legacy because the words palliative care had too much baggage so we had to change the name to get in the door I think those days are gone but symptom management if you reduce all this work to just symptoms you leave so much juicy stuff out and then a trick of Strictly symptom management point of view things very vital things like our our the life of our senses our sensual experiences our including our sexual experiences just don't make the cut but Karen was so good about bringing that into the conversation because of course it's elemental and that's what's sort of being challenged one of the things this subjects does it so it brings us down to our studs brings us down to the nub like what is what is the essence of life and it's what you know as far as I know I don't know what happens after we die but I think we all agree that this body dies and why is it interesting to have a body in the first place why would it be sad to see it go well for many of us that has to do with the things it can touch it can be touched you can feel things you know that's why I love having a body so you start thinking about what a body as people are trying to grope for a sense of meaning as loss is just piling up and it's so hard to keep up with the losses and try to realize what you still have which is why I think grieving as a muscle is really good inner to exercise and the way you can it's a skill almost so you can both digest what you're losing and acknowledge what you still have and as long as you have a body you've got something to feel and beyond the world of the intellect beyond the world of our thoughts which so many of us think is the pinnacle I think the pinnacle is really the life of the senses I think that's the irreducible piece of being human for me at least as long as I have a body and so anyway that's a long-winded way of saying that the this subject matter doesn't have to be sexual doesn't then it really doesn't have to be intercourse but we're just talking about human connection by way of the body and it's just an orphaned issue right next to death sex is that other taboo so and you just sit in clinic sometimes and often times we just broach the subject you know are you guys are you guys you know sometimes you have couples and ask are you sexually active or how are you guys experiencing touch there are other ways to get into this subject and every time I ever have thanks to Karen's teaching it always pays off people are so thrilled to be asked and then sometimes they're just thrilled to be reminded that they still have a body and that they could hope for their body to be a source of pleasure and not just Payne I'm so excited I can't hear maybe Karen the one who told us the great sex story in the book she probably did she does a lot of great sex stories so woman is in the hospital with her husband who's dying Joseph's heart failure and of course what we forget is those bed rails on the hospital bed do retract and so she was performing oral sex on her husband in the hospital and he died in the middle yeah and she was like oh did I just kill my husband did I do this and she was so beset with with guilt that she didn't talk to anybody about it for like six months and then she ended up in the support group because her she was carrying this around was guilt with her around for that long and she finally was like okay I've just I've got to confess something and she blurted out the story I was giving my husband a bj and he died and the entire support group got up and gave her a standing ovation so you know it's kind of amazing what we carry around with us but yeah thank you Karen for that story is so good I love you have the section in the book called Hospital hacks and one of them I think in that chapter another chapter is like nurses will hook you up with what you need like they'll give you some time alone or they'll like you give a shout out to nurses for being actually flexible and really person-centered which i think is true and cool thank you for the great story Karen BJ could you just tell us about the difference between hospice and palliative care and who should think about whether palliative care might be for them mmm yes thank you sorry public service announcement because by now most of you guys I would think you've heard of palliative care but a lot of us even think we know that what it is and don't including doctors and nurses I mean it'sit's very commonly misunderstood so it's really important to make this distinction so essentially palliative care is the interdisciplinary treatment of suffering that's our goal is to treat suffering this is all shorthand those more to it but that's the basic gist that's really novel in medicine because the rest of Medicine is treating diseases we're treating suffering and suffering is something that everyone does that's entirely subjective I don't get to tell my patients if they're suffering they tell me that so it has this power shifting dynamic to it's so beautiful but anyway so the treatment of suffering within the context of serious illness so you'll notice there's no mention of death in there you can a lot of my patients like Jay I've been seeing for maybe ten years so the common misperception is conception about palliative care is that it's end-of-life care and it's not and it's really important that we realize that it is inclusive of end-of-life care but it's just about suffering so because commonly people wait way too long to invoke palliative care and they suffer unnecessarily for years when there's this beautiful service just down the hall waiting for them so keep that in mind it's really never too soon to get palliative care so Hospice is a sort of a subset of palliative care that is sort of the treatment of suffering at the end of life so it's it's it is it's a type of palliative care that is designed for the final throes of life the final months of life and one more so that's that's the distinction one more thing is that Hospice since the 1980s is an insurance that's a benefit so there's a Medicare hospice benefit so when you say someone's on Hospice what we're saying is there on the hospice benefit and that it's insurance designation that has all these sort of rules to it like you have to have six months or less to live to qualify for it and to get Hospice you have to give up curative intent is care those are the insurance rules whereas pout of care is not an insurance designation per se and pad of care so you don't have to give up anything to get palliative care and that's a really important distinction in fact pad of care works best when it's alongside aggressive intensive care and can you just name some diseases that people might have that sure you could treat in palliative care along with their other specialists or primary care yeah pretty much I mean just about you name it just about any source of suffering in some especially in a chronic or overtime in other words you wouldn't call pad of care if you broke here are your arm and you're in pain that's not the that kind of acute emergency kind of care um but it you know typically chronic illness is the thing so cancer or heart disease or lung disease kidney disease you name it neurodegenerative diseases like ALS some folks like my mother and waning population has polio MS you name it pretty much would be easier name the the chronic illness is that you wouldn't seek out of care for in fact I can't think of a chronic illness that you wouldn't see palliative care for call thank you um I maybe have one or two questions more maybe two and then we can open up for questions too and comments could you guys speak to maybe I'll say is Shoshana the what kinds of things should everybody be doing like everybody in this room and it doesn't matter your age or your health to think about what you need to be doing to prepare in case you die or for the future and there's some ripples out in families right it like because then there's the question like should you be asking your loved ones to do a similar thing and but can you speak to that sure so we're big advocates of starting this conversation really early really far upstream and there's a couple of life cycle moments that seem like obvious places like for example when your kid goes in to get their drivers license at the DMV and they're asked whether or not they want to be an organ donor that's kind of an intense question like it's the first moment where you contemplate Wow I could get in a cab great example of something it's been totally normalized right yeah yeah and it's like you just check a box and you know 97% of people say they want to be organ donors and like a third of all people are because when it comes down to it they don't sign up and it's so that feels like an enormous opportunity like what if you went to the DMV and actually had a conversation like you are young and invincible now but you know this is something to start thinking about another moment that people are unaware of is when your child becomes a legal adult and you know graduates from high school or or I guess it would be somewhere in between high school and college when they when they turn 18 they you are no longer as their parents able to see their healthcare records legally do to have the HIPAA laws right so if your kid gets in an accident and ends up in the hospital it is not a given that you can see their healthcare records that you can be involved in their care so at that moment when they turn 18 is when you should sit down with them and say I think it might be a good idea for you to make me your health care you should actually be your durable power of attorney and your health care proxy exactly interests so to do an advanced care directive with your kid and then and that's another opportunity another moment to start talking about it I mean throughout life we have these moments and the fact is that were just a deeply phobic culture around death and we don't talk about it until we're in an emergency and can you say what when I die folder is because I think you're saying these moments you're talking about the moments to like do a couple things and then talk about it put it in a folder go and check on it down the line like what's in the folder yeah so um so the when I die file and this doesn't have to be a file like it could be a shoebox it could be a cloud drive it could be whatever you want and the funny story about this is that when we were writing I was like let's have people do an if I die file and BJ kind of looked at like if I die I'm sleeping here so when I die and so what goes there's like 20 things that go in this folder and we're not gonna bore you with every one but you know all of your legal paperwork so of course the most important thing is your advanced health care directive and the reason that document is important is that it forces you to have a conversation with the person who you're going to trust with your health care decisions if you can't speak for yourself so if you end up in an accident in the hospital and you can't speak for yourself you really want someone who you deeply deeply trust to be able to speak for you and help direct your doctors so that document of course you know your will your all of your passwords I mean we walk around just like collecting these things they just like they multiply on their own and you know we have password managers now to help us but if we don't give our people the password manager password yeah they don't have access to that - and I remember my sister and I trying to just find the emails of my dad's colleagues to invite him them to a memorial and we couldn't access his computer and his and his and his phone and stuff and so this can get really really useful totally I mean you probably experienced get the Apple ID oh my god you can't get photos with them yeah I mean it's like think of every time you've called Verizon to deal with an issue and multiply it by like a million right like you're in a phone tree forever right and here you are just trying to gather at that I say something interesting it's like takes 16 months to close and it's like to do all the paperwork you stuff something right you yes and every month the average number the average number of months is 16 which is you're like making it so that that paperwork is either done or it can be found or yes it's really smart there so there is a list of things in your book and if there's there's a long list and then aside from all of the like you know stuff that you need to put in there the passwords and all of that we also talked about the softer stuff to put in there which I really love because people forget to do this stuff to you so like writing a letter to your pupil you know your kids your brother or sister your parents maybe whoever it is the act of sitting down and like writing a letter to people and saying what you want them to know should you not be there is really powerful we do that in the book too there's this lovely woman who may be here tonight but I don't know Frisch Brants who is kind of a letter midwife she sits with hospice patients and and has them write a letter to someone in their life and I wrote one to my daughter Cleo who should be here tonight that's in the book and it's a really powerful exercise and of course I'm sure that letter will change over time as I get closer to death but it it brought me such relief just slipping that in our file and knowing that she would find it that's beautiful BJ for families who I guess this could be any stage like hey we should sit down and talk about these documents or if somebody is really ill like I'd like to talk to you about X all the things you that are looming do you have any advice for people who are trying to figure out how to broach that conversation whatever that might be how to have it where to have it when to have it what to say to open it like what would you say to people and it's it's really it's a good question it's a very clumsy a lot of us try to open up this conversation end up accidentally offending folks or you know you can be met with all sorts of surprising responses again because the subject just has a lot of it's got a lot of luggage and it just it's a very emotional subject and it was a big question from the publisher - is anyone gonna buy this book and we've been asked a lot about I want to give this book to my mom but if I give it to my mom what's she gonna think of me am i sending these crazy signals like I want her to die I mean it I mean it's sort of so it's tricky there's no easy answer there this is kind of why I'm so excited about folks showing up to talks like this and something like reimagine happening in the world so that there's not so much tension around the subject and therefore it's easier for us all to talk about so we're getting there but meanwhile I think a couple chicks like one is especially talking to folks there's some older generation I have found the commonly if you try to get them to talk about the end of their life for their own sake they're not interested but the second you say you know it's going to be so helpful to your kids after gone if you do X Y & Z if you do the advanced directive and if you talk to kids about this you're doing your family such a big favor and you'll see them in a single oh well that's a case if it's not for me I don't know but if it's for my family they'll do anything for their family so that's often a very good way in another good way in is if you own it yourself so say you know Uncle Bill you know I've been I got this book recently or you know whatever I was filling out my advance directive recently or whatever it is I've been thinking about that in my life because I got a scare I house scare or whatever it is own it yourself saying you know I found myself thinking about the end of my life and I have to say it was so if I found it very enriching actually he wasn't so scary and it made me realize some things about myself or certain things that I wanted you know and then from there it's an easier jump to sit to get Uncle Bill to talk about it if you kind of own it yourself that's a nice trick and then I think lastly you don't have to sort of you know you don't have to open the whole subject at once in fact I don't recommend it it's a huge subject there gazillion ways in we need a lot of on-ramps and sometimes the way in may be talking about what you love in life what hey what you know sitting around just talking with friends or family about all the things that are so precious to you and there you can link from well gosh someday what's it going to be like to lose that you know so you can kind of ease in through love or through joy or to the things you love about life and that can open up a bigger sort of existential conversation so those are some tips I left that you ended on the letter to your family and you ended on the big existential mmm questions because I think it's so interesting it's like we're after you're talking about people work and then you like zoom out and zoom in and it's just like really kind of interesting to see I want to ask one other question of Vijay and then let's do discussion and audience questions the American healthcare system is you know like I'm a physician and sometimes I feel sort of like personally embarrassed or like I want to apologize on behalf of like the system that were part of and I'm just curious I mean embedded in this question is like what do you wish you could change about healthcare but I think the question I'm curious for you and maybe I'm wondering to what you say to your patients is like how do you tend to orient to your patients to healthcare or what healthcare can do for them the healthcare system in particular not just like you or office we're a losing team healthcare system like what it's good for it's not good for and like as you go through it like you're thinking about this or whatever like is there something that you say like that yeah there's a lot to say about that is so true and I feel a lot of time and clinic I spend to sort of apologizing for the health care system and that kind of care is really there is a sort of a corrective to mine the gaps that open up and the rest of healthcare and there's some truth to that and sometimes apologizing for that healthcare system really often means explaining why that oncologist did this or that or why you know it's it's in helping patients and Families understand what folks are going through working in the healthcare system I think it's really important to separate in general the critique of individuals work at working the system from the system itself burnout is a huge problem in healthcare for a good reason because as hard as it is to be a patient in this system it's very hard to be a practice - you're constantly you're so compromised you can't do the work you are trained to do just from the daily vagaries of the system and that's demoralizing yeah so it's just hard all the way around and I think it's useful to get that across so that people aren't bashing the individual instead maybe we can focus that ire towards the system's issues so it's a little background but to bigger question a bigger answer to your question Lucy would be um I think this sort of singular thing to get across to anyone and everyone is you cannot don't hand yourself over to the doctor even if you have the a mensch for a doctor if you have dr. Welby as your doctor don't you know that that no one has the time anymore the way it's wired to get it everything you're gonna need and - and to get to know you in the old-fashioned way I mean there's still family medicine and there are still some our small town Doc's and there are relationships that do our given time and mouth medicine but those are very rare so you have to participate in your care in a new way you cannot let abdicate yourself that's I guess my bottom line because otherwise momentum takes hold one treatment baguettes together and you just go down these paths and you don't even know you just sort of momentum takes over and you just assume that the good doctor has your best interest in mind and they most likely do but you need to tell them what your best interest is because it's a highly subjective idea then the last point I think is in critical to get it across it these are different times now and why a book like this is necessary and wide these conversations and why maintaining your agency is so necessary as medicine we have the list of things that we can do in medicine is is huge and getting longer every day so if we're waiting for us to run out of things to try and then I'll then I'll yield to death don't you're not you're you're not gonna run out of things to try in fact most of us are gonna have to there's going to be come a time where we actively have to say no thanks to that next street if we want to get off this planet in a way that we would find meaningful so that's why that's why the caution hope that makes sense is some complexities in the system of ours I hope that makes sense great and I think in the book you talk you talk about that um which is super helpful and I think you the having a palliative care team if you have a serious illness who can help you parse out what's what including taking an interest in who you are as a person and having a book like this is really helpful um so let's do questions if anybody would like to start there out there out there yeah this is - BJ um hi my name is Randy Ren and I do hospice care work um where do you draw your strength and what brings you meaning hmm hi Randy thank you where do I draw my strength exactly you know this one right here helps me a lot mazie is her name I just like so many of us feel a great connection to nonhumans but so for me spending time with her in this sort of wordless way and feeling connected to nature through her someone's a little closer to a wildness than I am um part of his just sort of the aesthetic joy I have of being a companion like a fellow traveler with this other species and communicating together and intuiting things ago just I just can't say enough about that experience for me and what it does for me I might learn a lot too and when I had I had a service dog for eleven years right after I got to the hospital his name was Vermont and I remember very early on in my own trajectory in the first couple years after my injuries which was when I was 19 so early adulthood you know like so many of us I would get caught up in comparing myself you know either myself now to my old body or this body to everybody else's and driving myself kind of nuts with that and I still do many of us do but one lesson that really I get sort of daily hit from I know I'm quite certain that Maisie spend zero time worrying about the life she doesn't have yeah you know and I find that a very wise position you know especially once you kind of turn to the fact that time is precious so that's a big big part of my answer but some I need some connection to nature and the aesthetic domain in the world of the senses like I mentioned so that's my answer is there another part of your question or I think that was it okay thank you next question here on your left over here this question is um BJ hi Marsha hi BJ so you mentioned regret thoroughly tonight yeah my husband died about 10 years ago and BJ thank you for helping with that he had asked if at the end of his life he could have one more MDMA experience and at that moment I said okay but at the end of his life I got scared and my regret is that I didn't make that happen I could have made it happen but when you mentioned early also BJ psychedelics and death I want you to talk some more about that well thank you Marsha I appreciate you sharing your story - and and by the way what an honor it was to be anywhere near you and John so I think one thing to kind of get across around regret is and you can argue with me on this but regret regret can be one of those proxies for love and just wanting one more thing together you know and if you had had that experience with MDMA I bet you would have found one other thing to say gosh I wish I could have done that I wish I could have done that and in a way I hear that as saying that your love and your desire to be with them is just sort of inexhaustible and so in some level and I don't mean to put words your mouth but when I try to metabolize regret I oftentimes I think it regret it's sort of a fear of the past in a way and coming and coming to realize trying to reconcile the finite nature of our lives with sort of infinite desires we may have or the infinite love we may have that's a that's a clunky mismatch and so for anyone who any of us who loved life we're bound to die with some regrets of things that we just didn't get to that may be or may not be helpful but you bring up the idea of psychedelics at the end of life and this is one of the things that's most exciting to me right now that's happening you know besides us finally talking about these things in an open and honest way you know in medicine I think sort of existential fear existential distress essentially it's sort of a crisis of meaning which you know think about us human beings we're meaning we that's a that's a nutrient for us and my guess is existential distress it's now giving acknowledge as a phrase in healthcare but a lot of us would wouldn't think that that's our jurisdiction but I think if you step back I think most of us are dealing with illness are trying to find make meaning from that illness I think probably existential distress is the number one cause of any doctor visit I would I would imagine one way or another and today we have when someone comes to us with of crisis of meaning and there's anxiety around it we don't have much to offer maybe we'll sort of indirectly treat it with a valium and maybe sort of sedate their anxieties but that's not that's a poor substitute for actual meaning making um so in now at this moment finally there's a resurgence of old research around LSD psilocybin MDMA where these drugs were taken seriously at one point then all sorts of things happen the government got involved in popular culture took Oh ran away with in this deadness that way and all of a sudden those things became sort of a potent now there's a resurgence you guys might well no I mean ci is has a certificate training program and psychedelic assisted therapy here in San Francisco I mean there's some real momentum happening Michael Pollan's book how to change your mind your own work Marcia but essentially the data were you know Johns Hopkins NYU UCSF there's trials studying psilocybin specifically and other drugs too for this more like angst this existential distress is studied in people who are facing more telling themselves and are just paralyzed by it and the data are stunning so in the psilocybin data I think there's about 400 test subjects to date zero adverse events and most everyone walks on these are not thrill-seekers these are folks who are trying to make meaning of their lives most everyone walks out these one time experience it's guided it's very important structure to it's guided and there's an integration moment after the after the trip and people walk out of these experiences feeling connected to the cosmos in the world around them losing entirely losing their fear of death these are stunning results used to direct meaning making results and what's more is they seem to last for months besides that beyond that one trip so this is just we have nothing like this in medicine this is this is and now maybe we do so there's more study to be done maybe there are adverse events out there that we had to look out for etcetera some some amount of caution here but nothing but optimism and I'm just thrilled I feel like this is our this is a real heyday in the King bring help right over here thank you very much this is a wonderful talk I wanted to ask about the managing in home hospice I was helping to care for my father when he came home from the hospital and decided as you said doctor that there were no more treatments that he wanted to do he wanted to come home and so it made sense then for us to arrange for hospice we you've also spoken about taking a personal responsibility for one's care and how important that is at that stage of life it's often very difficult for the patient themselves to take that responsibility and it falls to the to the loved ones we found it tremendously difficult to wrangle and organize and manage the in-home hospice people who may have been very well intentioned but we're very poorly organized and oftentimes made mistakes significant mistakes and we found ourselves sort of weak we had every six hours when the new staff would come we would have a huddle in the hallway where my father couldn't hear to talk about what had happened in the past six hours what we were expecting to happen in the next six it was as if we were on staff and I'm curious if that is the normal experience or if there is a better experience that we could hope for hmmm I'm talking aloud jump in on here this event thanks for your question it is I mean we are unabashed fans of hospice as a rule there's no two ways about it and from a systems point of view it is the sort of the gold standard from the system's point of view of end-of-life care now it's also far from perfect and increasingly there's media coverage around some of the failings of some hospice age see some hospice organizations it's worth noting in the last 10 12 15 years that the bulk of growth in the hospice industry is in the for-profit sector mergers and acquisitions is becoming a volume business etc and and it's a business and it's also it's a piece of the healthcare system which we know to be broken and so beautiful things happen in Hospice and mistakes happen in hospice too and I think one thing too just while we're on it like you know if any of us in many many places in this country you may have a choice of several hospices to choose from so doing your due diligence interviewing these hospices before you make a decision asking around word-of-mouth asking about nursing ratios asking about how frequently expect home visits etc can be helpful to choosing but I would also say that the best hospice care I've ever seen still won't be enough in a way one thing to get across is and it sounds like you're experienced actually mistakes were made and that's obviously there's no excuse for that but even if there were no mistakes made I think one thing that people need to understand is that most you know you're gonna have an aide coming to the house maybe for an hour to a day a nurse maybe three times a week chaplains in military Social Work similarly but that still leaves 23 plus hours a day where no one's around and it's amazing that they're available 24 hours a day by phone but um so what I'm saying is even the best hospice care you're still going to need family and friends rallying around no matter what so that that would be an important message to get across here um but I would also just encourage you to keep talking about your experiences I think some folks say that Hospice is it's filled with angels and it's such important work and it is important work and it is filled with angels but it's awesome but not necessarily it's filled with people and please feed back to that Hospice please speak of your experiences I think it's really critical I worry that that our field it's it's now getting more and more popular which puts pressure on organizations and busyness takes root and we go the way of any other medical subspecialty so call it so please speak up just as you're doing thank you also my name is Jen I'm an ICU nurse and I have sort of an anecdotal story to share and ask you to speak to it a couple years ago I was working nights and I had a patient who was really sick and then obviously at nights there's very few resources and that particular team wasn't there and in the morning a PA who's part of the treatment team for this patient I was told like they're not gonna escalate care and I said oh she is the patient gonna see palliative care oh no the attending doesn't like palliative care the last time we consulted with them the patient lived it was something to that effect and of course my response was but that's a win it was I might have the verbage wrong at this point but it was something to that effect so my question is I'm in a teaching institution and that list that you referred to earlier it just seems to go on forever and sometimes it seems like maybe it's just an opportunity for the residents to practice things and I very rarely see the healthcare practitioners even broach palliative or hospice care and I mean it's it's such a it's such a difficult being such a loaded subject and I don't know that any of us can really say when the time is for a particular person but it certainly doesn't seem to be brought up very often I've had the privilege of sitting in a couple of family meetings and I generally don't say anything in terms of that so I mean this question can go to all of you but how like the resistance that's Matt with curative versus palliative and there doesn't there seems to be some kind of disconnect and collaboration yeah I mean the thing that I have found so surprising is that the taboos that exist outside the hospital follow you into including within healthcare culture and some of that is what BJ was talking about we have this list of tools that's so long and people say in medicine if you have a hammer everything looks like a nail so if you know how to do a particular treatment that's what you can offer and that's a way of showing love to your patient and so oftentimes people's practitioners clinicians tool boxes aren't as big as they should be and I think that's changing in medical schools around the country and hopefully your institution too right including because of your work like spreading the word in a practical sense in the ward where you work because I think the nice thing about palliative care is like there's no trick there's no like you were saying BJ there's nothing that you have to give up it's getting it's getting a wise team there to talk about what's really happening what are the trade-offs and how can we mitigate suffering whatever that might look like and help you feel better during this time no matter what's happening whatever that means so I'm it's been surprising to me as a clinician as it has to you that the that there are misconceptions within healthcare about what hospice or palliative care are and so I think that work there's a lot of work to be done by us within healthcare to I've had this similar experience to just do things I mean I think part of I think to exercise your own frustration one is medical education and I think we need to rewire how how doctors nurses social workers chaplains are trained period and some level some set of folks you just need to retire and on this note and then I'll add the other pieces you know for us as human beings and this is why I think it's really important I think to act through this activism to be and to be working with the public not just within healthcare because if you patient say hey doctor I'd really like palliative care involved or and they say well no I don't need that and then say well why not you know you have that activism potential as a patient it's usually on it doesn't register and patients may not feel that power but you actually have it so the other trick here is to push on all of us as the public to push on our doctors hi my name is Debra I'm also an ICU nurse actually and in the ICU as you probably are aware I see a lot of patients kind of dying you know under these artificial conditions on ventilators etc and I think for me as a relatively new nurse and someone who's younger it's very hard and I feel like I'm experiencing like a lot of burnout and compassion fatigue and moral distress and I'm just wondering if like you guys have any tips or advice that you could share with me because I don't want to sort of burn out of the profession completely I love being a nurse but it's hard I think for me being in the ICU and wrestling with the kinds of deaths that people are experiencing yeah it's it's really hard right I mean I think I'll just say a few things time talk about here one is I think for all of us is to realize that again most of these I think the data suggests that burnout is usually related to the system's issues I mean most of us don't burnout because cancer exists it's because of sort of these structural impediments that are around it so we have to work against so you may I think for me personally I used to do full-time clinical work and just got I couldn't handle it didn't want to handle it I was getting bad at it you know and so cutting your own work by working at the policy level to change healthcare or working nursing and medical education to affect how folks are trained I think are two really good ways to exercise that anxiety and also to sort of dilute some of the bedside work I find it really useful to have a little yin and yang with that too and I think the data around burning out I mean it's it's sort of like caregiver burden you know it's basically find someone to share this angst with and have some sort of contempo Tyvek sir sighs some metabolize it meditations bless you meditations a good one whatever it is you need to some sort of technology to sort of off-gas and I think it's really important for us to attach with our patients but I think the other half that coin that doesn't get taught so well is I mean I think it's easy for most of us for many of us in healthcare to want to care for our patients I think the harder thing that the technology that isn't taught is how to detach should a wind wind up with a patient and a family and then wind out and at the end of the day I think it's really useful to do both of those things or else you can get stuck and you start snowballing and you fart walk and start walking around feeling like you're carrying the weight of the world I'm going to take two more questions and I just want to invite everybody to come to the atrium immediately after the program Shoshanna and BJ are both gonna be signing books next question up here on your left hi maybe I can give BJ a break I'm a design master student and I'm really curious about the outcome of the project that you guys worked on together were you able to rebrand Hospice and I'm guessing it was a bit of a mixed bag what was successful and what were the challenges and overall what do you feel like the role of design is in this space well thank you for that question I am so encouraged by the fact that a master's in design is here at this talk that's awesome so yeah you know what I learned landing at IDEO is that everything is designed like every experience in life is designed right and so you know I talk about it like a rebranding Hospice but in if in effect what we were trying to set out to do I think was to give people the sense that they could have some agency in designing the end of their own lives but you do have some say in that can you control everything no of course not there are times when you'll be yielded little control but setting out with the intention of being an engaged and active participant in that experience is a kind of design and just speaking to the outcome of that project I mean that project was pretty limited around Zen Hospice and trying to get the word out about a specific hospice and hospice in general but I'll say the outcome of that project was this I mean you know I BJ wrote a TED talk right after that project I helped him a little bit with that that TED talk has been seen by almost 10 million people which is just bananas and we set out to write the book on the back of that and you know what we're really trying to do in this exercise is give people a sense that they can lean into this and and be the designers of their own lives and you know again you say this all the time we see like so much of writing about death talking about death is just learning how to live right just learning how to live with intention and design so you know when you when you go through that experience of taking care of someone as they're dying you just realize how little time we really have you know we've got like five minutes here and so let's let's live that five minutes let's really live it and and suck the marrow out right thank you so this was really the outcome of that project reimagined and really I mean reimagine came out of I do as well it was born it I do out of this you know we helped design the original experience of a civic conversation around death which has scaled into this incredible community event which BJ and I are both on the board we're super proud of what Brad and Jeanie have done and it's traveling to other cities now basically like everyone into the pool the more that we can be talking about this and have people like design students in these conversations and young ICU nurses wow that's just we feel really emboldened by that it's really great we're gonna take one last question here in the front hi Shauna it's Jennifer Holmes we went to high school together so do you know amazing she could open the door at the hospital so I was at Zen Hospice when BJ came on and I had been there a couple of years and and even though you weren't a Buddhist practitioner you totally jumped right in and flowed with us perfectly and I just wanted to know what you got from us as Buddhist practitioners as a palliative care doctor coming into our weird super earnest space [Laughter] well let's see you again only a birthday High grad who could freeze a question that way well done yeah it was a why it was it was a wild experience entering that place it really took me a while to get my bearings um a remarkable place um but answer your question Jennifer two things leap out I mean - written in a way they're the reasons I went there and those reasons got fleshed out in a beautiful way for me one was just this - proof that living until you die the death is not just a medical event you know that having a place that is led largely by volunteers where spirituality forms the basis of the work versus medical science you know it you don't have to fortunately you don't it's not one or the other and that's I think the point we were trying to make by wet marrying some of these things together but you guys made the point so beautifully that the spiritual approach to care and a volunteer sort of a non professional approach to care could do such amazing work this is not esoteric it's probably the least esoteric subject there is in a way that was beautiful to behold and to be put into witness and learn from and then the second piece was something that you know that the that's became designed that the bricks and mortar of the guest house in particular I mean there's a certain importable 'ti to the work that's done in Laguna Honda versus the guest had a guest house or anywhere else that a lot of that beauty flows with the person wherever they're going but there was something about the house - of having that Victorian space and seeing what the environment of care nevermind the people in it in addition to the people that's the house itself had this palliative effect you felted the second people walk through that door that was that was beautiful to behold and it converted it convinced me that one of the ways this this movement can can accelerate is getting architects and interior designers involved that the hope that once you start seeing illness and death as an experience well then you know that opens the door of how an experience gets crafted and its large it by environmental and material cues so it's a huge palette to work with that we barely scratched the surface so those are the two pieces that I'll carry with me as long as I can remember thank you so um do please join us outside in the lobby and Shoshana mpj will be signing books is there my last question for you is is there a particular way that you sign the books or inscribe the books or anything out of curiosity like anything you write or do maybe it depends on like what the person we're students to you and you're signing right yeah it depends like any you know like we'll we can go anywhere with these things but it would I don't know about you I think most of us have taken a lot of time sometimes we want to think of something unique and if with that freaking book which has gotten a little hard so but anyway thank you so much please tell me thanks [Music] thank you [Applause] you

Channel: JCCSF

Views: 3,760

Rating: 5 out of 5

Keywords: death, dying, lectures, life lessons, education

Id: NEr9CuZZoOo

Length: 74min 11sec (4451 seconds)

Published: Wed Oct 30 2019