Conversations on Compassion with Dr. BJ Miller

tonight we're going to talk about deaf I have as my guest the CB my friend BJ Miller and for those who may not know BJ he is a palliative and care physician and has been involved in hospice care and was the executive director for a period of time at the Zen hospice Center in San Francisco he has a book coming out called the beginner's guide to death which comes out in July and it's a practical guide not only how to live but also how to die and one of the reasons I was excited about having him with us is not only his extraordinary personal story but he's also a very sweet handsome guy but he's really done some amazing talks and actually we spoke together at the end well conference recently up in San Francisco which is quite an extraordinary conference in and of itself talking about end-of-life issues and so we're gonna have a conversation about death you know I gave a talk at TEDx Sacramento some years ago and and the reason I'm going to make this statement and it'll tell you though one of the reasons I'm interested in this topic and what I said at that conference to start out was that as a physician are as a neurosurgeon and a physician for the last quarter century my job has been to prevent death but one of the greatest experiences I've had as a physician is to be with those who are dying who have truly lived and the last decade as a neuroscientist is to understand what stops people from living and we will not escape our death but the key is how do you accept that reality and still be able to live to be joyous and and as our person here compassionate which all of us can learn to be better at so without further ado be Jana are going to start a conversation I'll I'll ask some very leading questions that are softballs that allow him to look really good and and then we'll go a little further so thank you so much for those of you who don't know much about seek care you can find out about the work we do at c-care CC ar e dot stanford.edu we study the neuroscience of compassion altruism and how those behaviors improve our health and well-being we do this through research we also have speakers we put on conferences and actually one of the funnest things that I do is this which is conversations on compassion and for those of you who may not have been to those before you can find them online and we've had the Dalai Lama take not hon Eckhart Tolle and now soon BJ Dowlen so thank you some of you may have your cell phone on so you may want to check you know I was at a conference one time and the gentleman said if I hear a cell phone it's so irritates me everyone turn off your cell phones because I'll be so angry and I'll throw you out and right then my cell phone went off well thank you for coming BJ thank you sir so we were talking a little bit before we began but all of us have a back story and oftentimes that back story results in our present story and I think certainly that is the case with you and you were an undergraduate at Princeton and had a horrible accident and maybe you can't share that with us and how it impacted you in terms of the consequences of that after and how it led perhaps to you gaining greater insight into our mortality yeah that's a question know the answer to thank you for that so yes a sophomore year college just after Thanksgiving break we had just gotten back on campus and we had been away from each other for all four days all those friends were excited to see each other there's a Monday night we went out just kind of horsing around and there's a commuter train in Princeton that runs from the Princeton proper to Princeton Junction to take people to Philly in New York and it's called the Dinky of all things so sad to lose limbs to a thing called the dinky it's very humbling but anyways we walking to the Wawa market to get a sandwich and there's this train just sitting there not very daring just a park train with a ladder on it just sitting there and so we climbed it like you would climb a tree or really didn't think for a second that it was a dangerous thing to do wasn't moving I think but when I stood up I had a metal watch on and when I stood up I this is like the sambar did the bus's in San Francisco the wires that run overhead so when I stood up electricity art to the watch a metal watch and that was it electricity you entered the arm and blew out the legs so yeah that was it it was instantaneous well the the amputations were surgical and I was in a burning it for three months or so in New Jersey st. Barnabus and Livingston New Jersey and got great care there by the way but that boy there's a lot to say but that as you say Jim that set me up for all sorts of things moving forward and I think early on the decision was thanks to my mom I learned and answered the disability rights movement I learned that disability was not was a normal B was something to you don't overcome it's because he it's not going away you know it's not something that you put behind you I think everyone sort of wants you to or that's often the narrative but thanks to my mother and others I knew that that was not possible also it wasn't smart so pretty quickly this became a compelling force for me to learn from to bounce off of to wrestle with and it also put me in front of a lot of very very kind people and giving people I feel so I mean there's so much to say about this so I'll try to keep it short and by the way if we get to questions anything's out there's nothing off-limits this subject that we're talking was huge and it's personal and professionals so anything's welcome but I learned how a couple things I think that really led forward one was this the the myth of Independence I'd like to call it that's that it's not like I went from the independent world to the dependent world which is sort of how we language this and that's one reasons why it feels harder than it has to be is you feel like the world is it made for you anymore and see to go over here but of course there is no such thing as an independent person I've never met an independent person I don't know if anyone would ever want to be and it would be a very lonely thing to be so it taught me that which was a very useful thing and then it which then ended up putting me in touch with all the things that we do have in common including that we suffer and so that led me into sort of interested in Universal threads that unites people and suffering is a big one and so that led me altima into medicine and into palliative care and I guess one more thing to say about it and again we can ping off it but you mentioned Joe Jim and how how some people die before they die you know there's all those ways we these early deaths before we actually die there's a gazillion ways to do that but if you have loss earlier in life and if you have enough support to kind of work with it move through it it's almost like a skill like you can get good at losing you can get good at falling we just witnessed a woman in the hallway he just was very good at falling it's like it's almost as there's a skill to it and she got up and she got up but there really there's a skill to it and and you get to learn resilience you get to find nooks and crannies in yourself that you wouldn't have otherwise had an excuse to find and you see these incredible acts of kindness from other people that you wouldn't have had an excuse to events and I guess where I'm going is for all the sorrow and all the heartache that certainly went with it I don't mean to be Pollyannish those things were exactly what made me realize the power and importance of joy and compassion etc they're all kind of related so in a way getting in touch with all that loss put me in touch with beauty put me in touch with kindness etc and so it's just continued to be a lesson a bundle of lessons for me and it's put me into all sorts of interesting work you know one of the things that sort of I think intersects with this is concept of equanimity because the nature of life is ups and downs and a lot of us sort of have a tendency to want the upside yeah and because it feels good and you feel alive and you feel great and a lot of attention comes to you because of that but the reality is I think as BJ was showing us is that oftentimes the greatest lessons we learn and the greatest insights we get or with the downsides which often has to do with very deep suffering but it's the nature of that suffering that demonstrates one's common humanity and the reality that none of us can avoid suffering so before we go on to this very deep topic I want to ask you about tea mm-hm so you were a tea merchant let's hear a little bit of Union none of you thought I was going to go yeah no so I so I was so it sophomore year before I got injured I was heading into East Asian Studies I was studying Chinese language the Tiananmen Square massacre had happened on my way into college and I was just interested in China and that led to an interest in the Chinese aesthetic which led an interest to into tea and one of my best friends at the time he was in Britain and he was learning about tea from the British angle and it just became this thing we had in common and we'd love to play with and I became really just it became a big hobby of mine and you guys know I mean teas is amazing it's all all tea comes from the same camellia plant all these practically infinite varieties of tea from the same little plant it's just a stunning thing it puts a wine to shame and it's something you can just play with forever and ever and ever so loved it loved it was big part of my life in general and then deep in a medical school mm-hmm I another we could talk about this for a long time but deep in a medical school I was gonna go into rehabilitation medicine that's what I was interested in putting this stuff to use so I figured I'll go to medicine I'll work with other disabled people won't that be nice and then I did a rotation in rehab medicine deep in med school and turned out I hated it and for all sorts of reasons and so I promised myself and then one thing I learned was that time was short and I wasn't gonna act you know sort of accidentally sacrificed my life I met a lot of people who felt stuck in medicine like well my dad was a doctor and I'm done all this training what else am I gonna do and they just stay in medicine and mm-hmm so I promised myself to not do that so I was gonna drop drop out I've been finished med schools it's a senior year but I was gonna stop and go into the tea business I had my friend I had started the business and we were doing it but I was gonna go recommit myself to it but then I did an internship in Milwaukee in palliative care and or in medicine and met palliative care and fell in love and off I went but for a while I thought that was going to be my in my life it's still a huge hobby of mine yes so I have two questions related to that should one put milk in their teeth deep questions this is actually an existential depends if you're trying to if you got crap tea and you want to masquerade it sure put some milk if you didn't know how many people are British sorry I mean and the actually the end of them will leave tea but shoot the other question is how hot should the water be um depends on the type of tea you were brewing black tea red tea you will use a hotter water who longs less hot green tea some green teas practically tepid okay so enough about tea lemon you know if you're trying to if you like lemon go for it but otherwise those are often like flavorings I've learned from being a tea merchant that that's often a way to just masquerade not a very good substrate in the first place so there's tea we were talking out actually outside about actually a seminal book by a fella by the name of Ernest Becker have any of you read that book it's called the denial of death and the interesting thing about medicine especially in the West is that well they're two problems one is medicine in the West is about illness it's not about wellness right the other thing though is that we have separated life from the natural process of death so that it seems foreign and that as a result many people especially doctors if they feel that they have failed as a physician which means their patient is dying they immediately cut off so they don't have to deal with that failure in front of them and frankly also a variety of issues associated with people who are near death and many people are not prepared to die and it makes it very painful for them because they're trying to cling and and they want so badly and it creates more pain and suffering actually not only for themselves but their family and so BJ maybe you could comment on and this book won the Pulitzer Prize actually in 1974 I think but maybe you could comment on how you intersected with that and your thoughts about sort of this duality between the physical self and the spiritual self and he talks about this immortality play that each of us creates for ourself and in some ways a narrative of being a hero mmhmm yeah that that's a very that book was very formative for me it's in you'll see it in Annie Hall it's referenced in Annie Hall times I just there's a lot to say about it for one it helped me understand help pull my because medicine is sort of assumed death as its subject in modern but which is sort of um there's a lot this is unfortunate in some ways but course it's not a medical not an inherently medical subject and so it was interesting to read Ernest Becker called a cultural anthropologist a totally different angle and the book he basically started in some ways takes Freud's sort of obsession with sex and sort of crossed out sex puts and death essentially that we humans are constantly bouncing off are trying to wrap our heads around our egos and trying to wrap our heads around the fact that we have to die and all sorts of cool things there's a terror management theory I can remember the guys names who who came up with this but there's a whole school of thought around human behavior that flows from Becker's work so it's really ripe stuff we court encourage you guys to look it up but essentially that we spend so much time because we're so enamored with ourselves are so consumed with ourselves maybe it's a better word and that this this crazy idea that we have to love life even though as we're losing it that we have to somehow you know find ourselves even as we're losing ourselves it just doesn't really work in a lot of ways with the human mind it really challenges us in some important ways and we do some really weird things as a species bouncing off of it really kind of fascinating things I mean I don't know about you guys I am I'm not really interested in doing away with neuroses I mean to me neuroses or personality so I mean I'm all for life is weird and wild and the crazy things we do are part of the intrigue for us and so so be it but I think what ends up happening if there's a tragedy in that is you can become so consumed with the development of your ego with the development of yourself that you lose out on a life beyond yourself that you lose touch with the life that's much bigger that's flowing inside and outside of you when maybe there's not so much to fear after all once we kind of loosen it's not for me it's not so much as get do away with the ego it's more like defuse the egos see myself and everything and everything in me it's not out of megalomania it's just said it's like a just a diffuse ego and that has been very helpful to me so yeah and we see this in our patients yeah fear is a huge thing that as you guys know it can be helpful I should have been afraid of that train I would have been helpful but but you know it's if there's a use for it but it can it can be too much and if you're not careful you can become so strapped with that you actually and you're so afraid to lose your life that you forget to live your life that's the great irony and sorrow where do you think religion fits into this well you know religion has well religions big obviously and I don't think I want to be careful that was the softball question I just want to be careful to not sound like an authority yeah about you know but the thing that they seem to have in common would be that they provide answers to unanswerable questions or questions that we find very difficult to answer like reconciling ourself with with the fact that we have to die like we've been talking that there doesn't seem to necessarily be an answer to this dilemma and I think that's part of you know for me I sort of more existentially sort of philosophically wired I'm interested in meaning I for me I think meaning is something that we make more than perhaps something that we find whether if there's some great meaning to the universe I'm not aware of it and that's okay I'm happy with the mystery but I'm also but meanwhile I'm very aware that we get to we're meaning making factories we can ingest or invest meaning just about anywhere and it's a powerful cool wonderful force but I'm giving off getting off track I guess back to religion I think religion provides us with a sort of a structure for meaning and a structure for unanswerable questions and a way to ease our fears because it implies that we belong to something larger than ourselves and for me that that's the cosmos and that's enough but whether there's a creator I'm agnostic personally and I like I'm a devout agnostic but I do think that one of the things that's going on today is that we have lost with the secularization of society we there's a lot of loss that goes with that and I think in some ways without that ready-made catchment for ourselves we really extra struggle when we flail around so it's interesting because fear is not healthy and one of the things that we study is how people's anxiety fear stress has a very negative physiologic effect and in fact is associated with the occurrence of disease a chronicity of disease the severity of disease and is often associated with the shorter life the interesting thing though is that this issue of our mortality for many people does create an immense amount of fear and some people postulate that one of the purposes of religion is actually to create a belief system that says that you're going to live beyond this physical life and therefore you have no reason to fear death and in fact studies have shown that religious people actually live longer as do Republicans and that's associated with being righteous no no I'm not joking actually there there is science about about this but but the point of that statement may seem unclear but the point is that it's here we create the narrative that gives us what that is and whether it's meaning whether it's comfort with our own mortality and I think you were saying you're a devout agnostic I'm actually at about a theist and because I don't need to just sort of have this thing that says well if it's somebody's there then I'm you I agree you could be there I just don't choose not to believe that but but it's okay because I don't have that fear and you're talking about meaning and it's this idea of you create meaning and that's a very powerful thing and each of us have the potential within us to define what that is what it can be and actually it's incredibly powerful what's a Guinness oh and you know the other thing I was going to comment on is that I've spent a fair amount of time with fairly significant spiritual and religious leaders like the Dalai Lama or tick not Han or AMA and the thing I found fascinating about that is not one has hit me in the head and said you're an atheist yet I have deep relationships with some of these people and the extraordinary thing about that is is their interest at some level is no longer about the dogma of the religion it's about what's in your hearts and whether you care and I think that is the fundamental core of not only who we are but the gift that we actually can give to other people one of the things I want to talk to you about is what percentage of people actually carefully prepare for their death mm-hmm I don't know the number but it's it's small the minority by a longshot but that's changing conversations like this I mean that is there's you guys come into a talk like this there's an interest that seems to be shifting but very few people that I meet are prepared have thought about it enough to prepare to die sadly I think we all agree that that's an important thing to do I think the great I think that if there's like a jump to the answer or an answer but like people who work in hospice and around end-of-life and perhaps in medicine in general perhaps you too Jim there feels it feels like there's a secret like a lot of us stave off thinking about death it almost feels like a superstition like if you think about it somehow you're welcoming if you say the words you make it happen and so we kind of just keep it over there and that and we think that that's going to help us live a have more fun or something but I think the trick and the the converse or some inverse converse is that when people see oh you work in hospice oh you must be so miserable oh that must be so sad and yeah sure it's sad but this the secret I'm getting to is no I mean I think a lot of us get hooked on this work because you learn pretty quickly that by roping death into your worldview into your frame of reality not not the opposite of your reality not the antithesis of your end but part of it when you accommodate it a it becomes less frightening but B you tend to live much more richly and potently and you have a certain you right size yourself there's you neither need to puff yourself up to somehow defeat this thing but nor do you have to feel diminished because you're gonna lose to death so the secret I guess is what I'm trying to say is those of us who have rubbed it into our world view it's not morose it's a little bit of a it's a way for us to actually love life while we have it and that that's a sweet sweet side effect so I think that's one of the messages a lot of us are trying to get out there that yeah preparing for your death is practical and useful in all sorts of ways it helps your family does all sorts of things but it will also help you live your life in a much more rich way in the meantime how many people actually have done if you will all the work you think is necessary to prepare for death well that's a large number Wow one person - okay - but it just shows you because most of us sort of want to push that away and you know it's quite extraordinary because you know we can just and immediately and I have to tell you I have not done adequate preparation myself actually you've been with a lot of people who have died and I have as well and as you point out I mean sometimes it is painful to watch and it's especially painful for someone who's made no preparation whatsoever and and it's that I think is very very painful to watch but being with somebody who actually has prepared and has been thoughtful and has released them themselves to that inevitability it is actually an extraordinary honor and privilege to spend those last moments with those individuals and I was wondering if you might share one or two examples or of an experience that you can recall yeah you know there are a fair amount of negative examples for folks who have put it off put it off put it off until it's too late and you know in a word those examples are potent because they point you to regret and that that is and I'm all for I'm one of the things that's kind of happened I grass a little bit one of the things that's happening is as as there's a sort of reacquaintance with death as a subject and increasingly in popular culture and one of the and that seems really good but one of the fears is that that just the reductive forces of media and sort of group thinking are lopping off some of the harder emotions and that mix because it is hard the idea is to not look at it so that you think it's really neato and and to put some glitter on it that would be that's a mistake you you look at it so you can expand your capacity to feel all sorts of things not to narrow your aperture but to blow it open and I little I worry sometimes that were again in this massive way we're cutting off the things on the margins that are so critical so that that's a digression but one of the things I see that's really hard at the end of life are folks who are just loaded with regrets and invariably they say you know if I hadn't only if I had just stopped and thought about how precious my time was I would have done X Y or Z I would have told my kids I love them more or I would have done this or I wouldn't have done that and now there's no time and so they have all this extra sorrow it's extra regret and that that's really really hard to be around and I also very informative for me I meant another quick digression for me I feel like my goal from doing this job is so that I can learn to love what I have while I still have it that's my goal I I keep watching myself appreciate things right when I'm about to lose them or right after I've lost them I'd do it all the time so it feels like my thanks to my patients they keep reminding me to watch that so anyway so I'm sort of heading towards the negative examples regrets and those are powerful and in some ways a goal of minimizing your regrets is a really it's a really good one sometimes sitting with patients who are trying to make decisions about treatment will often use this sort of if they don't know which way to go and they're not really sure how they feel and ambivalence is so normal sometimes they'll say well do this little trick we'll say well let's leap ahead let's get to this picture self in your deathbed and look back how will you how will you wished you have handled this what would you have wished to have done what would you have wished to have become it's a little little trick and sometimes it's really helpful I'd do it too so I'm digressing on digressions but there are other so I think what you're asked my Jimin is some of the powerful stories of people who have done their homework well I sort of feel sorry for those guys because they end up there not only do they have to be dying but then they have to end up teaching everybody all these things too so they have to like because they're actually have things in perspective and things in check and again that doesn't mean no sorrow they just have it in perspective and they're and and same with disability one of the things that's so hard about it is not so much the inborn aches and pains of it but it's how the world treats you and so I watch these poor folks in death beds who have really done their homework and people are projecting all their junk onto him and they've got a you know navigated infinite but their final contribution is as these teachers I just remember one patient is just there were multiple but at Zen hostas project a woman named Jeanette who stood out she was really she had ALS she was really feisty and cantankerous and one of my favorite things about her says she was dying she started smoking again which was I thought was just so beautiful as a doctor I can't tell you how fun and it's prescribed cigarettes it's like practically it was such a weird thing but Jeannette loved it she she also reminded me of this sort of aesthetic potential the immediacy of our senses and the sort of power of having a body in the first place so she would watch her smoke out on the patio and she would just like it was ecstasy and it was just like and she had trouble breathing so it's not an easy task but she it was like it was like watching her she was like making a cast of her lungs with every inhale it was like allowing her to feel the contours of her lungs it was just gorgeous this is I don't mean to go I'm not encouraging to go smoke but I just mean that a person has done their homework and is daring to live out every last cell it's a beautiful thing to behold and it doesn't necessarily have to look like piece it can be filled with smoke and and if feisty angsty all sorts of stuff it's all welcomed but the trick is those who've done their homework I guess to the bottom line is they don't hate themselves for dying the when you had your accident did you have a near-death experience but technically I mean I almost died but no I didn't have didn't see no not in the way I think you're talking not asking no nothing special happening but I did come very close to death but I didn't it was really after I was out of the woods that my doctors were finally honest with me let me know how close it was with the things they were telling my family at the end of my parents at the end of most days and and maybe maybe this is a little bit maybe this was a near-death II insofar as well I remember hearing I remember hearing that and being I almost I think I maybe even smiled or laughed because a it felt cool to have almost died be like there was something I feel like there was something in me and I'm not I don't know where it's coming from maybe it was the drugs maybe it was ignorance but I really felt like I knew better like I knew I wasn't on some level that was sort of the feeling I get the smile that came on my face when he told me that was I think because I realized I had some that there was this thing called intuition there was a gut going on at work and yeah but no answer your question Jim unfortunate didn't I didn't see God I didn't see a light I didn't know how many have seen the light how many near-death experiences and survey did how many of you saw a religious figure or something related to a belief system during that event and was since you're still here you did not die but how many of your lives were profoundly changed by that how many it didn't do anything so I had a near-death experience for those of you who did not read my book and so I was resident and I was out celebrating with some of my colleagues using various substances some of which were illegal and a friend of mine lost control of the car that we were driving and ran us into a tree at 40 miles an hour and I was wearing a lap belt and I didn't keep flexion injury the back and I had a spine fracture was paralyzed lost bowel and bladder function had a transected small bowel and a fractured spleen and it was not a good day so I went to the emergency room fortunately my colleagues at the hospital was at the hospital I was training at did not do any drug or alcohol levels but I do not recommend you take drugs and alcohol I was not the driver but I should have known better but anyway I went to surgery they were player the small bowel they took out my spleen but the Chief of Surgery who operated on me missed a bleeder so when I came out of surgery my blood pressure which was like normal 120 over 80 or so started dropping and literally the chairman of my department and neurosurgery was arguing with the chief of surgery as my blood pressure went from like a hundred over 60 80 over 40 60 over 20 about the possibility that he could not have made a mistake and missed a bleeder and this and what happened was actually left my body as my blood pressure got really low and I was up in the corner of the room looking at this argument between these two people where the chairman finally said he used an expletive if you don't take him back to surgery I will and the guy finally relented and I had five liters of blood in my belly my blood pressure was 40 over zero when they took him back so I really almost died but once I went to the o.r I had a classic near-death experience where I was going down a river of light I heard all my loved ones who had passed before welcoming me I was also reliving my life and and at the end of this river of light was this tunnel of light that was the brightest warmest experience I mean it's incredible and I wanted to merge with the light and and in some ways it was the most joyous wonderful of feelings and the river started speeding up and the initially it was slow and then it started really going fast and I was going to merge with the light and right before that I screamed to myself no and then I woke up in the recovery room so of course people asked me wow that was an incredibly profound experience how did that change you and actually it didn't I looked at it from a science point of view and realized that I had a lack of oxygen to my occipital cortex and that was why at this burst of light and the deepest memories you have are the ones that stick with you so as I was losing all my memories the ones that were most deeply embedded the most important to me we're still there for me and well in fact it was what was left at least that's how I put it now if I was an agnostic I could see I could be probably very wrong but I think it was just physiologically so but that being said in later reflection I realized how powerful that could be and at the same time though it also reinforced though how powerful us being here is and how you first of all you don't control your end but at least most people don't but also that it's you being here that makes the end there and how you act here what's here and how you see yourself and how you see your purpose and your meaning because I think being with older individuals who have died and I do think it takes some age almost everyone at the end of their days wants to feel that they had purpose and meaning here and of course purpose and meaning for most people translates to be of service to others and I think that's what gives most of us our meaning in life and that certainly has been my experience and so I can look at the clock here we only have a few more minutes I think we're gonna open it to questions and for those people who may have questions what I'd like to ask you to do if it's not too much trouble is to actually use the microphones and does anybody have any questions now it's always interesting at these sorts of things although I don't think it'll be the case here of course we'll ask for questions and then someone will just talk and you'll finally say well what's the question there was only one person who prepared for death and I want to know what she prepared I'm sorry there was only one person who prepared for death and so I wanted to know what she did there's only one pearl or the woman I was mentioning ah oh oh the woman in the audience yes that what's not a question for us good but go ahead no answer the question go up to the mic and answer the question so I lost my husband to cancer about two and a half years ago so we started preparing for death so to speak you know before that and I'm thankful sorry so basically when I think about preparing for death a lot of things come to mind and it's all the paperwork let's say a living trust will Vance directives that's a start right because I know that there are some people probably in this room that are like I'll get there I'll do that well let me tell you even when you have those things prepared you still have to fight they fight for things in a sense with the law but you're better off if you get it done so with that in mind ask questions of your partner regardless if you have all the paperwork done because it doesn't necessarily mean that they've talked about exactly what they want or how they want it and I know that my parents had asked me they're like well how'd you know and because everything's like oh you you had that conversation no we didn't have a conversation we were very young my husband was first diagnosed when he was 42 so battled it for three years anyways my point is we sort of came to preparing by just lit I just listened to what he wanted and I think that anyways became very important so as far as what I'm doing to prepare like I have all that done and then I'm also living my truth I became a family patient advisor with Hospice of the valley one of the only groups that's partnering with hospice to make a difference in the conversation around death so I don't know I think that's how I'm preparing so and I talked to my child about death and it's a part of life and so I hope that answer your question thank you I wondered what you suggest by way of preparation and I'm thinking more on the spiritual psychological ease of passing than the paperwork part of it yeah thank you thank you both I mean so and I and I I'm really glad that you brought it back there's there's there's a range of things to be done and in in the practical logistical things are really key it's amazing the difference for those who are left behind when someone has not taken the time so to be clear let's so just so let's just move from the sort of nitty-gritty logistical up through the inter intra personal and spiritual so I mean so as you mentioned an advance directive and if you're really living with a serious illness I'd recommend you do this next step thing called a pulsed an advance directive is a legal document a pulse designed by a doctor it's an actually a medical order its pulses physicians order physician order for life-sustaining treatment it's a companion to your advance directive and because it's signed by a doctor it's actually an order advanced directive some hospitals will blow right past them so just because you have your advance directive is not a guarantee that your wishes will be met a POLST will increase the odds that they will be so those are really important pieces of paper and of course they're not just piece of paper they reflect conversations not just one people change their minds over time what I'm willing to live with and what I'm not willing to live with that is a moving target so these are conversations you have over time with yourselves and people you love and your doctors and then things like a will a very important and then you mentioned a trust so unless you want to a burden your loved ones with probate you don't stop at the will get a trust and don't just get a trust sign it and fund the trust a lot of people think they're done when they did the trust but they didn't actually fund it and that's a problem so these are things that conversation to have with you your financial person with your legal person with their families I mean it is actually we make it really hard to die there so there's those are sort of paperwork stuff that's really really key increasingly sort of a lot of us have lives on social media so one of the you guys may it's really kind of stunningly hard to like turn off Facebook accounts and things like that after the death so what and sets up this very grotesque thing where people are sending Facebook alerts out from a dead person's account and I just can get really ghoulish there is increasingly Facebook is working through this I'm not it's not just Facebook but there are social media is another way you have to kind of tend to your death so beyond that save a bunch of money mmm dying I mean can can you afford to die is the question is is really tricky we have all chapter in our book on this you know 70 pertinency here yeah I think health care expenses are the number one cause of personal bankruptcy in our country and I think it's something like 70 percent of those who go bankrupt are insured yeah so I think we all think of the insured versus the uninsured that's not there's no insurance ain't ain't enough so start saving like now it's really really hard and laws most of us gonna live with chronic illness for years that may mean being out of the workforce for years and being on fixed income for years whereas we used to get sick and died in a co matter of days or weeks now it's many many years so start saving for it sorry I know this is very depressing litany but really really really important so those are some of the logistical things and then I think moving beyond that it's sort of the the stuff I was referring to a Jeanette and her cigarettes it's just sort of a life where you've minimized your regrets when you actually act on the impulse when you love someone you need to tell them but you act on it you know when you want to learn something you go learn it you don't continually put things off that sort of this sort of deferred gratification that we do all the time in the name of discipline and other things can really catch up with us in a harsh way so living yourself I mean it's pretty hard to live every day like it's your last I don't even know if that's possible and I don't want to be too cheeky here but do watch that if you watch if you see your stack of your to do stack of I wish I had written that person and this person I wish I needed to talk to I haven't talked to aunt Jeannie in forever you know if you see that list growing tend to it keep regrets at bay and then finally I think you what ends up happening if those of us who are lucky enough to be on the planet for long enough certainly has seems to happen naturally which is this diffusion of your ego you know you you you get small I mean I one of the things where I'm happiest is when I realize how nice and small I am that's a real there's a real release in that and I then I you start seeing value and Worth and life outside of yourself and then all of a sudden you have a pathway to immortality right there you know when you die you're gonna dissolve and but your your your your atoms go back and you're part of this world that keeps on going I mean this this phrase end of life is really as an important misnomer it's end of your life light life will keep going and if there's as soon as you get in touch with that whether it's through a faith system or whatever however it gets you there start caring about the world beyond yourself that includes yourself I'm not saying like don't you know you clewd yourself in this this is not a matter of this is not an aesthetic pursuit so anyway the long answer sorry but this is a really important question but there's there's a pretty good list for you do those things can you say the name of your book which is coming out July I'm not able on Amazon Thank You Jenna yeah a beginner's guide to the end a beginner's guide to the end he misspoke before he said beginner's guide to death I wanted to let him B's my elder but it's a beginner's guide to the end yeah to Shoshana burgers my co-author and that's coming on July I'm hurt big guy one of the interesting things and we'll get to your question in just a sec is that I've seen it is your turn about letting go up your ego it's fascinating to watch people who are wise get older because many of us have a tendency to you know have our house exactly neat everything is perfect but you watch a person as they're heading towards the end and all that BS doesn't matter anymore right they wear the same clothes okay they're not worried about a little dirt on the floor a few crumbs or anything like that and amazingly their content and happy because they've let go of this trying to keep everything together and look perfect and have a display for others they're living for themselves yes sir thank you Jim Thank You PJ for a great conversation so I think that one of the ways that I prepare is to to be loving in a present kind of way as hard as that is and as importantly to express love BJ I love your brother and you know in my 50-something a body I think I'm preparing my questions really about my mom so my mom's 80 something has arthritis more importantly in this context is she has Alzheimer's her memory is not very good she doesn't know what day it is doesn't recognize people that those kinds of things you know thinks her parents are alive doesn't know where she is and so when I think about her and I've tried to understand well how can we help her prepare or how is she preparing when I'm not even sure she knows I mean she's in her last chapter I'm not even sure sort of where her consciousness is to be able to think about death so I imagine you might have some experience with mm-hmm Alzheimer's patients and yeah well I mean so thanks yeah today I mean and I really appreciate you sharing them and this is we all have as a very personal inherently personal subject and the more we talk in think out loud together the better so thank you I mean so one caution is for wow we're compos mentis it's a good time why another reason why it's great to not defer leasing as too long oops and but if mom didn't do that you know that's okay that a lot of people don't one way does it for one reason or another and this gets out what one of the probably if I had to pick one thing to do to kind of prepare yourself at least to navigate the healthcare system through the end of life is to name your proxy you know someone who's gonna be speaking on your behalf when you can no longer speak on your behalf and that may default to someone in the family but if if you're gonna do one thing do that and it's not just it's not an honorific it's not just it's not to bestow someone with it's it's actually a really important job and sometimes that means it's not the spouse sometimes it's someone who's going to be able to think soberly on your behalf not project their wishes but to speak on your behalf on your mom's behalf did your mom does she have a health care proxy Anthony in any of fish so yeah my siblings dying we've done all the paperwork and all of that kind of stuff and we feel like for prepare on that end and certainly there's all the financial part of it but you know again I'm more concerned with how she's facing each day mm-hmm how she thinks about you know the direction of her day and her life you know because part of me you know in the whole context of this conversation is seeing the end of life as not something to fear something in fact maybe per to look forward to and it's just a struggle because I don't think I can we can't have that conversation she doesn't sort of understand where she is in her life and you can't actually you know I my only comment was I actually my mother went through that to the point where she didn't even know who I was and she was not in this world and then you know I well again you're projecting in some sense her humanity that it still exists but what happens unfortunately sometimes is I think they're gone and then the question is who are you making decisions for because actually there was a recent experience with a spiritual leader who was a friend of mine who had a massive stroke and they asked me to come and see him and I and it was a Miss dominant hemisphere and I told him they should let him die because you know uh this is an individual who his words are incredible he has people surrounding him and most people at the age of 80 s late 80s would want that and I told his followers you have to be careful about what decision you're making and who it is for because often times you want to cling on and they're not there or they actually would not want that and then you're being selfish and you have to I think be very very careful about that but maybe we can ask a couple more questions and I want me to cut you off but we have a few can I say yes sorry you're my elder because if you can't talk to mom and if you can't sort of use cognition and your intellect to kind of find your way together suffering is kind of an amazing thing you can rely suffering will show itself so in your gut or from a furrowed brow or from restlessness your mom will probably show you whether or not in the moment she is getting something from life yeah it does you don't need a narrative over time that's why the aesthetic world is so powerful to me there's a world beyond the intellect and so your gut furrowed brow difficulty breathing fidget enos if she's turning away food she's telling you that's that's communication yeah okay thank you thank you bye thank you this is a related to compassion so how does a patient's experience of compassion impact the choices they make in terms of their care and in particular because in Canada we have medically assisted dying so I just wanted to see if you had well it's interesting if somebody has the cognitive abilities and they have a perception in their own mind that their presence in this world is causing suffering to others I think that they have the right to make a decision now often times other things can interfere with that but in the best sense if someone is making a decision while they have their mental faculties and they're actually doing it not only to help their own suffering but also to decrease the suffering of those around them you know one of the challenges I have had frequently is in modern society we don't have a let's say your parents with you they live someplace else typically the siblings are spread all over and oftentimes those siblings haven't seen their loved ones for a long time or been with them yet there'll be one sibling who's lived nearby and has sort of been the caregiver and then when a tragic event occurs everyone comes and the people who've been the least there decide now it's time to give their opinion and and exercise their decision because of all the guilt they have about ignoring their family member and this gets into a very very difficult I'm sure you've and so you have this one person you know I've been taking care of mom for the last five years she told me what she wanted I'm trying to do it and said you don't know you you're just being selfish because you want everything and you wanted to die that's your only and oh my god and so I think it is important that you actually take the time to know what the person wants and also have the conversation with siblings because I have seen this actually destroy relationships among siblings too and when in fact this should everyone should come together to make someone's passing at ease versus now you're having screaming contests outside of the you know the hospital bed and any of your experienced I would say that kind of points me to one of the one of your jobs as a caregiver is self-reflection because one of the enemies in this is projection and so I think it's one of the most the kindest things we can do is be self aware and it gets really heated at the end just as you're saying Jim so put that on your list of to do now the and one other thing which I found and you can tell me if you've been experienced with this I'm a very pragmatic realist and when it's clearly evident that this person is going to pass you know I start having that conversation now a lot of neurosurgeons run away because it can be a painful and time-consuming but that being said there sometimes though is a doctor a subset of doctors who for whatever reason they want to torture the patient to the absolute end and to assuage their own guilt of failure that I have done everything possible yet that what they're doing is causing the patient to suffer horrible horrible pain and and it's in sort of in some ways your note now no longer caring for the patient you're dealing with your own ego issues and I've had a number of conversations about that go ahead I wanted to go back to your recovery after your traumatic accident and in learning about post-traumatic growth mm the wise teacher here at Stanford said the rule is dudes you have to resist the temptation to point it out to somebody who's who's suffered a trauma that you may not be the one to say hey there's gonna be amazing things you learn is so like you need to zip that but I'm curious about who like what influences did you have around you that helped you do that remarkable shift into I mean I heard you speak in San Francisco where you talked about studying art and plumbing like the definition of what's what it is to be human and I suspect your mother probably had something to do with it but like can you talk about what what helped nurture you and inspire you to do the tremendous growth you have hmm well thanks thanks for quite yeah I you know I think well one is I think I think I got a running start as I referenced my mom and I had grown up with a disabled mother so a lot of people I met in rehab really almost had to almost felt like a required 1 to 3 year period of hating themselves for because they couldn't play football anymore or whatever whatever it was and they had to just hate their body and I got to sidestep all that you know I had my mom had taught me in her example and just and explicitly that you know that you know this is just part of life and loss as normal and one of my favorite things that happens when I'm talked to us sometimes I'll give talks with school kids my favorite thing is when it's when someone when a kid asked me well don't you miss having two hands and I'll say well yeah I mean do I really do two hands is so lovely but you know you know it's okay and you know and don't you miss having three hands and they'll say you know I always wonder like how if they ever get it good every once while you watch a kid get it because who are you comparing yourself to am I like so unlucky to have have lost a hand or am i super lucky to have my dominant hand you know this is all very mushy stuff and you get to say so I had learned from so much for my mother so I had a kind of a running start I knew that I wasn't just my body I knew this thing was gonna die anyway I knew that it was something to work around I knew that limitations were exactly what get us creatively primed you know talk to an architect they don't deal with a blank sheet of paper they got gravity they got all sorts of material limitations limitations are what Prime us as humans to find a way through the way we were lost without limitations in some way they are exactly what make us creative so I knew all those things already going in on some level that was very helpful then as you referenced turning my service I went back to college and turned my major to art because of this question I wanted to learn this perspective I want what made a human being a human being and I had this this magnificent campus and this rediculous course catalog and I saw it as therapeutic you know that was that I'm very proud of myself for seeing that for the therapeutic potential of my mind and being in a place where I could cultivate my mind and studying art taught me how to see and that was a really huge gift we human beings it's stunning we can change out our lenses we can change how we see things that is a probably at least my favorite human capacity and it's so dang therapeutic this is not a recreational interest as a therapeutic one so so I took advantage of what I had there and then I guess along the way I just realized that this was again not something overcome but something to work with something to use I would not be doing the work I'm doing if it hadn't happened right so I'm built a life with it and after a while I couldn't I couldn't hate this accident anymore because it brought so much my way that was the trick so first thank you so much for the discussion that we feel I think all honored to be here and listen to this so I was curious if you have insights or advice for those of us who are interested in being of service in the field of palliative care who don't have a medical background great great great great so well any clinical but I'm so doctor so proud of care you guys know the team is doctor nurse social worker chaplain at least do you mean not not not a doctor or not a clinician so I guess not a clinician I'm hoping that someone else will benefit from this question I'm a user experience designer and also interested in mindfulness meditation and as I've been learning about palliative care it seems like there are so many opportunities and challenges but it's a bit overwhelming to know where to kind of start and like get oriented but I just feel very drawn commission so so that's I guess the context behind why I'm asking great so I think I think I mean we can talk for hours on this so this is why so the book that we referenced my co-author Shoshanna burger she's editorial director at IDEO she's a designer because to me Design Thinking is this whole other sort of social science is a way of if we see illness and death as an experience well then we get to create for it and condition it and that is that's design you know so you can exercise this in all sorts of ways directly you could get involved with design around patience patient experience durable medical equipment adaptive devices architecture or indirectly just take out on your mission that your work is to be a force in this world that helps people suffer less and love more you would be in my bind a palliative designer if you did that so you can ply it directly or indirectly also just to mention at stat c-care we've developed a compassion cultivation training program that actually is very useful for people who are caregivers or are suffering or dealing with other existential crises and a lot of people in fact one of our teachers Robert Cusack deals with a lot of people who are grieving or at end-of-life types of situations to be respectful of BJ he has to pick up his dog up in San Francisco in Mill Valley in Mill Valley I'm sorry and so we're gonna have to let him go thank you all so much and I'm sorry we can't get all of your questions thank you guys thank you you

Channel: CCARE at Stanford University

Views: 16,850

Rating: 4.944056 out of 5

Keywords: CCARE, Compassion, Dr. James Doty, Dr. BJ Miller

Id: AKe9OqxBb9Q

Length: 68min 50sec (4130 seconds)

Published: Tue Mar 26 2019