BJ Miller, MD: The problem with dying and what might we do about it

well we don't have a lot of time so I'm going to jump in okay and I'm going to sit if people don't mind so there's we have a big subject to handle in 20 minutes so it's impossible so I'm not going to really try to handle it in 20 minutes but I don't know how controversial statement this is does anyone here think that there's that healthcare is kind of working just as it should and dying is as easy as it could be okay so I don't okay great let's just save me about five hours of work all right you know there's I must start with well David Bowie in honor of David Bowie did you know he's I just love his music but more to our point here here's a guy who did what I hope we as a society can learn to do which is he confronted his desk he looked at it he worked with it and his final music his final album own notes guys know is all about his own death and so it was his final creative act I think we think of death and dying is its anti creative thing it's where everything's being taken from us which all negative so he gives us the first answer the question of the problem of dying is he paid attention to it he looked at it he worked with it which is really instructive for all of us and working at den hospice project for the last five years as I did this piece of paying attention really came to the floor for me there's a real craft to paying attention to something especially something as difficult as the abyss but when we don't do that all sorts of haphazard things happen and we could do unnecessary horrifying death or we're surprised someday to learn that we're dying so that's problem number one okay we're not going to do these are just are the pillars what I imagine if we so we agree there's a problem I think these are the four pillars that we need to address to change things so society right we all need to wake up we need to participate in this we cannot just hand ourselves over to the doctors and think everything's going to be fine no way I'm a doctor I can tell you that the cost with is and again that's not easy I'm you know again that is not easy I worked for similar that we need to be better trained Atul Gawande is book being mortal points is found a doctors clinicians general are pretty good people it's not that they're trying to be nefarious or point us in the wrong direction if it's for most part doctors and nurses and others aren't very well trained and having difficult conversations aren't very well trained beyond the point in which there's nothing to fix so when they stop when there's nothing more to fix we say oh I'm sorry thing where we can do but of course if you expand your purview to conclude support and non abandonment and kindness well there's something there's always something we can do right okay so those are the first two bullets policy we're not going to touch that one but does it that's a big piece of this puzzle infrastructure is another so another way of looking at the problem of dying is people aren't getting the deaths that they want and could have so I draw a big distinction between the suffering that comes to us by virtue of Mother Nature you know think my favorite allergies think about if you lost your home to a tornado you'd be sad right it's a very different enterprise and losing your home to arson it conjures different emotions okay so I think the fact that we die is not so stunning but the fact that we die when better jets and relieves and peace are actually accessible are actually possible but we just can't get to them that's an infrastructure issue a policy issue so just calling out the pillars of change here okay now again the rest of the talk is largely about getting us into the room together how okay we're saying we want to pay attention to subject or how do we do this so these are some prompts to help us get in arena together so one is to point out painfully obvious things which are dying people are still living I think you actually have to say that and it also conjures up there's some good news in that by the way because the way we live will help inform the way we die it's not some exotic esoteric phase of life that we can't understand Obul death may be unknowable and maybe some of you would argue that point but to me I think that is unknowable and as absence of life dying however is absolutely entwined with life and it is much more knowable and when I talk to people whether it's a den hospice project or in clinic at UCSF you know when it comes down to it most people I've talked to are really worried about the suffering they imagine dying to entail I don't know I have not met too many people I can count on one hand from clinic days of people who were afraid to be dead there was there was a fear of the abyss but for the most part I think we're afraid of the suffering that dying implies okay so I just want to call out and you most you guys probably know what palliative care is but it's always worth reminding ourselves even if I were given for all pound of care clinicians in the room I would still be putting this flight up it's a it's a really this is a quietly revolutionary field at least in its promise and its potential so just this is what the feds this is what CMS how the CMS defines pound of care can you see that well enough so I just shut up and let you read it yeah okay okay so contrast that with the rest of healthcare right cardiology nephrology name for organs oncology hematology name for disease this is named for the human condition like everyone everyone suffers right everyone then went on argue that point no one ever has by the way actually one person in Utah said that they hadn't suffered but I talked him about after he said I've had such a privileged life I just feel so ashamed that I had to say I haven't suffered I was like okay well anyway he's an outlier we take him off the table no one has ever said they don't suffer but suffering so we've all done it it's a human condition it seems part and parcel of being human being traditions like Zen will help point is that that's the starting point is that we suffer so it's not this anomalous surprise right and so we've all done it total inclusion and working this field is very different right how many brain surgeons have every time ever had brain surgery on themselves well all pad of care clinicians suffer there's a totally different buy-in and a relationship between caregiver and carries sleeve in the field which I love okay and the other thing about this to point out is while as the rest of Medicine and reasonably so is always in the pursuit of objectivity a pound of care embraces subjectivity you know I can't test you for suffering you have to tell me that and one of great potentials of this field is to upend the power dynamic which is really thrilling the patient's under the driver's seat they tell me if there's something I don't tell them that okay that's that's thrilling ii have a definition i will just be quiet for a second so they call out some of the domains of suffering no one discipline has a lock on suffering right but this is this is right after the 2009 death penalty bottle but somehow upended all of this and made it about the lack of choice we no one in the field saw this coming by the way so it's interesting that it lands as it does you'll notice who in this definition there's no mention of time there's no mention of death or dying and so this is again something you guys probably all know which is that hospice end-of-life care is a piece of the puzzle of palliative care but it's also an insurance designation it's the six months or less to live and said well you can go for hospice but you can't go for acute care it's that that's an invention there's nothing natural about that you don't change the color at six months or less to go so it's but to the point to get around some of the inborn restrictions the insurance designation we have this field of palliative care which is much larger and as you notice that that last the definition does not include a mention of time suffering okay we're waiting through these guys but I'll just point out here it's a personal suffering is very difficult to define I like to think of it as a wedge a wedge between the reality we have and the reality we want alright so you have two responses to that definition you can in the sort of Zen tradition did really practice at accepting the reality you have and not trying to change it all the time option one very hard to do option to change the world change your reality also very tricky so I think most of us try to do a little bit of both but the others I want to point out here is what I snuck onto the slide which is the bottom I can see logistical suffering this is a sad part and I as a clinician I am close to burnout much of the time not because I'm meeting difficult diseases or tough family dynamics I'm burning out because I'm working in a system that's not designed very well so I just want to call out that the health system itself can be a source of suffering which is a real shame because as we probably all believe people going to healthcare for really generally really good reasons and it's demoralizing to work on behalf of a system that doesn't serve well okay so on that note the design brief perhaps just this is the tips of icebergs here guys but you know perhaps the construct of the healthcare system is off so the last 150 years I think we've focused on disease the idea of being if we can stamp out disease which stamped out suffering and will live forever that's kind of the Assumption who would have guessed in the you know early 20th century that brainless little bacteria we're going to get smarter than our drugs right who the hell would have guessed that who would have guessed that if we cure an infant mortality behind that is waiting all sorts of other ways to die if we put that push back on heart disease and we're going to upend we're going to on earth new cancers there's an insistence here about the dying that seems to just not be willing to leave the room and I think that's kind of where we are now we're in a crossroad this is a reckoning for the healthcare system and for my money this has a lot to do with it those of us have been through hospitals as patients you feel you can you can feel yourself being processed you are you are incidental to your disease and there are some good reasons for that but it's also a ton of fallout from that and again it's one of the ways in which we suffer we've tried to separate medical from social issues in the healthcare system and what we pay for in a person I mean if you go to the ER San Francisco General or any County Hospital its stilled with people there for social issues but they're ending up in the medical nonetheless so that's a false dichotomy we have to sort of upend that one there's a lot more to say about this no time so we'll keep moving okay here's a here's a good reminder to us again working around in a Buddhist tradition it's been very interesting I mean I will meet some folks volunteers in hospice and others who will say it will point out to me well say things thank you no birth no death and I find that interesting but I can't really I can't sue the patient who's dying in a few weeks I don't don't worry there is no deaths you know there's a it doesn't really help and so I'm meeting people you can't even sew with it what is death when do we die we can keep a body of live forever on machines is that alive I don't know actually we're at a point where we actually have to redefine or think through the definition of death so one thing I think that we can agree on is that this body this body dies okay and that comes to this body and by the way I hope we're getting over the separation between mind and body okay so that's just meant to ground us and also meant to honor reward what it is that this body does before it fades away this body feels things you know when you think about the joys in your life and if you really are serious about living until death well what gives you joy in your life well a lot of it just has to do with movement and time and space and using the senses that we are given to enjoy our food or music or whatever it may be it's really this slide I mean it as a nod to the aesthetic domain and then we up we up take that as part of the therapeutic response that's not sort of aromatherapy that's cute on the side if we can you know we'll let people come in with their aromas it is no it needs to be much more integrated right food for thought there okay this one I love sorry to tell you guys but we are the dime you are one day very likely going to die I hope that's not shocking but I think it's very useful so we keep that in mind for one that means that's a total inclusion implied all of a sudden with this major theme of life we have something in common with people all the way halfway across the globe I have something in common with people who live in the jungle I have you know it's an a major thing for us to share and not just the fact that we die but that we humans have been a forethought to consider our own death before it happens so it's a major thing and therefore it has this potential to be a force for justice from ashes to ashes we can have wildly different experiences in a life I've seen as an hospice and at UCSF where people had just really just the worst luck in all stretches of their life and they're able to eke out some community and peace in the final hours and days and it's like with a happier ending it's like the whole life all of a sudden would felt worth it to the person you know something that ends well it's like even the struggles to get there it can those kind of fade quickly so there's this potential for justice in this an absolute inclusion which I love and also a nod for language going to be careful we say the dying it's like not a homeless if anytime there's Bob before proceeding the next word note you are actively separating yourself from that thing okay so we are the dime the good news here for designers and clinicians is also that well when you think about what dying people need well think about what you need the empathy becomes sort of the wave for work all right healing versus curing big difference curing fixings great stuff when it happens when it can happen but it can't always happen healing however can I believe all right so healing seems to be much more of an internal process I as a clinician can't fully I can't I may be able to externally come in and help secure fix something but I cannot force someone to heal that is an internal process I can be an agent on behalf of that but that's an important distinction an important goal for health care if we just stopped it cheering we have a lot of problems and we're kicking the can to some other systems some other industries someone else to take care of I think that's a mistake for a number of reasons so perhaps healing is a better goal things change and one thing just to note is we're designing things thinking through how things would be better to note how people's minds change by the way is it closed we know this from data closer people get to their own death their minds change pretty rapidly what's important then what they want they want to see to order they will not want to be early so you have to think maybe the name of the game now is for the system is nimbleness dexterity agility that we can bob and weave with people okay I don't know things anything I don't know that anything else I'm saying today is an opinion but this is an opinion just to note it I think and a lot of people have told me patients who are closer to death than me I have told me that this is true there are things that are worse in life than death I offered up for his food for thought and especially now since June that we in this state have assisted dying legislation it's a worthy question for all of us to ponder choice ok I watch my fellow clinicians do this all the time I think we equate choice with freedom and freedom as good thing and freedom has put if any felt freedom is pushing back on death in some way yeah well I've watched myself and other clinicians who are just so eager to offer some choice to people offer up false choices that's like a new form of negligence that that when we offer the choices we know in our heart are not going to help people just to offer something that's a negligence I think we have invented a new kind of suffering in those moments so I think we have to be very honest and very capable careful with each other on this one and by the way if you're in the bed and you're exhausted and death is coming sometimes being offered choice is not very helpful even if they're real choices my choice takes energy to make and then it means you can make the wrong choice sometimes just tell me what to do you know all right this is another light we suffer because of our language we suffer for our constructs and in medicine where we we have normal and we have pathological now that's very helpful on a slide histologically two points point a cancerous cell out from a healthy cell okay but that's a convention and we get into trouble we confuse our conventions with the reality they're meant to help just okay to be clear who here has never been sick all right that's just not part of a normal life right who aging suffering these are all this is normal so we send these aberrant signals to our patients especially with things that aren't fixable that somehow they're pathological and I as a disabled person have a lot of stories around that the disability isn't so hard it's the way the society treats you is so dang difficult okay so this is a varied Sordi pathologizing things I think is a very important thread for a way forward okay here is my favorite slide this is not a mistake this is simply to point out that it's really mysteries of very beautiful things not knowing is a very beautiful thing you know this is another great way another you know if you ever interested come volunteer with us at Dunn auspice project and we also have education programs which are very interesting that I'll help you kind of grasp not knowing and the profound sort of beauty and potential that's but that offers out this is also a nod to in the Health Sciences we we tend to call you know mystery ignorant and crowded out and say well no we got to work harder everything's can be knowable I just study a little bit are just maybe ok someday and I also think there's a lot of room and beauty in not knowing in mystery and I think some of the most therapeutic moments I've had with patients have been when I said you know I don't know but I'm not going to run away I don't have an answer but I'm going to sit with you it can be an incredibly profound moment ok so make room for mystery quality of life not much to say about that but other than to say that now first of all subjective you guys tell me what quality of life is and secondly quality of life and quality of health two different things but I think we're learning that they're actually entwined we know for more and more data that living well and living long are related not opposed and I know a lot of lost souls who have perfect lipid panels and perfect blood pressure so I think maybe maybe our goal is quality of life not just quality of health or maybe those definitions you didn't okay we're running out time guys less horrible more wonderful most people end up in the health care system because something's gone wrong right there's a problem we've crowded out preventive care in primary care for the most part people end up in the system because there's a problem and our goal of mitigating suffering is of is a noble one if we can do that that's great but I would just challenge all of us to raise the bar a little higher I mean let's sure let's make life less crappy but also can we look and keep an eye out for wellbeing for wholeness for healing for something being even more wonderful okay here we're at a time I will just simply say this this is from data from the California Health Care Foundation interviewing a couple thousand Californians about what's important to them at the end of life two things notice how few of these have anything to do with medicine or health care okay health care serve de facto default place for dying people end up but we're not necessarily much more qualified than an average citizen to deal with it the second point is this burden saying being a burden what this is an indictment I think of society that once we've lost our primary purpose like there's no space for us in this planet we just don't have to get out of the way we got to get way better at repurposing ourselves and encouraging each other I mean think of all the wisdom languishing in nursing homes what a shame and then the last point here and then I really will stop is that a burden purpose meaning good stuff I love purpose I love meaning but I also love meaninglessness and I would challenge us all to make space for things that have no purpose whatsoever playing with my dog riding my bike Sun on my skin these are reasons for living but I'm not sure they have much of a purpose okay that's it thank you [Music]

Channel: Stanford Medicine X

Views: 17,548

Rating: 4.9694657 out of 5

Keywords: medicine X, MedX, epatient, patient-centered, health care, medicine, end of life, palliative care

Id: IbtZUKl9XJo

Length: 21min 34sec (1294 seconds)

Published: Mon Feb 27 2017