intro’d to BJ here (via share from Courtney):
ted2015 – what really matters at the end of life
patient – one who suffers – so i guess we’re all patients..
american healthcare system – more of its fair share of dysfunction – to match its brilliance… most everyone who goes into healthcare really means well – but we who work in it are also unwitting agents for a system that too often does not serve… why?
healthcare was designed with diseases.. not people at its center
which is to say – it was badly designed.. and nowhere are effects of bad design more heartbreaking or the opportunity for good design more compelling than at the end of life.. distilled/concentrated.. no do overs..
so fractalistic.. to Ed.. so not only heartbreaking at end of life.. but at 5.. when we are still bursting w/curiosity/imagination..
intention and creativity to the experience of dying
on redesigning how it is we die – for most people the scariest think about death is being dead,… it’s dying/suffering – key distinction
suffering is necessary as it is and suffering we can change..
called to make space.. adjust.. grow..
it can be really good to realize forces larger than ourselves… proportionality.. a cosmic right sizing..
on the systems side.. so much of suffering is unnecessary, invented…. good news.. since made up.. we can change it..
5 min – making the system sensitive to this fundamental distinction of necessary and unnecessary suffering… gives us our first design cue.. our role as caregivers… people who care.. is to relieve suffering.. not to add to it
like wanted and unwanted stress… to systemic change.
6 min – palliative includes end of live care but not limited to it.. it’s about comfort and living well… you don’t have to die anytime soon to benefit from palliative care
loss is one thing – regret quite another..
7 min – on having the support to make decisions that are best for your life over time
yes. huge. a & a ness
most of this is on shift in perspective.. on how you can see – when you can’t change what you can see..
zen hospice project
9 min – well intended in the name of sterility… but hospitals tend to assault our senses… and the most we might hope for w/in those walls is numbness…anesthetic.. literally opposite of aesthetic..
i revere hospitals.. but we ask too much of our hospitals.. they’re places for acute trauma and treatable illnesses.. they’re no place to live/die
my stolen hospital moment – snowball – made me realize – in that moment just being any part of this planet in this universe mattered more to me than whether i lived or died.. that snow ball packed all the inspiration i needed to both try to live and be ok if i did not..
11 min – on people ready to go – not because they found peace.. but because they were so repulsed by what their lives had become
12 min – we are no where near ready for this silver tsunami.. we need infrastructure dynamic enough to handle these seismic shifts.. …now is the time to create something new.. i know we can because we have to… the alternative is unacceptable..
an infrastructure – deep/simple/open enough
key ingredients: policy, ed/training, systems, bricks and mortar..
systemic change – infrastructure – via imagination – a nother way
13 min – smoke – to fill her lungs filled while she has them…priorities change
sensuous aesthetic gratification where in a moment we are rewarded for just being
so much of it comes down to loving our time by way of our senses.. our body.. the very thing doing the living and dying..
kitchen most poignant room, even though most can’t eat much.. one of most tried/true interventions (with all going on under our roof) baking cookies..
and who would believe that.. unless you/they did that.. no? – graeber law of model.. when it’s that crazy/simple/deep..
15 min –
as long as we have our senses.. even just one.. we have at least the possibility of accessing what makes us feel human/connected
2 needs ness – as infrastructure
primordial/sensorial delights that say the things we don’t have words for…impulses that make us stay present.. no need for a past or a future..
1\ teasing unnecessary suffering out
2\ tending to dignity by way of senses/body
3\ set our sights on well-being – making life more wonderful rather than just less horrible
getting right at the distinction between disease centered vs people centered… an even playful act..
16 min – play – one of our highest form of adaptation
since dying is necessary part of life.. there are mtns of sorrow that cannot move and one way or another we will all kneell there.. rather i am asking we make space.. to allow life to play its way all the way out… rather than just getting out of the way..aging can be a process of crescendo thru to the end
we can’t solve death… we can design towards it
a liberation – to redesign life around parts that have died..
if we love such moments ferociously.. then maybe we can learn to live well… not in spite of death.. but because of it..
let death be what takes us.. not lack of imagination
find/follow BJ via zen hospice:
#1 regret ness.. so change up input.. as palliative care..
a nother way.. deep/simple/open enough
Also here’s @jmooallem‘s story for @CalSunday featuring the brilliant BJ Miller, Death Redesigned: stories.californiasunday.com/2015-04-05/dea… cc @zenhospice
When you sit with a dying person, Miller says, “Time is always in the room.
Zen Hospice had hired Ideo for the better part of a year to work on several ambitious fronts at once. Miller told me Ideo would first help them “better articulate ourselves to ourselves” — zero in on what makes Zen Hospice’s philosophy and style of care valuable, and enhance it even further.
“I think,” Miller told me modestly, “we’re interested in gestating something like a movement.”
Ideo, meanwhile, had encouraged Miller to reach out to ted, and he was soon invited to speak on the final day of the ted conference in Vancouver in March. This was a tremendous opportunity: Bennett and Miller both sensed that the scattered but intensifying conversation about death in the culture was searching for some center of gravity. To become a genuine movement, it needed some stake to wrap around and grow — an ambassador like Miller, or an organization like Zen Hospice, or even an entire community, like San Francisco. “San Francisco feels like a very logical place to me for death to be normed,” Bennett told me. “It’s a place where radicalism was born. Why can’t the radicalism of death be something we help build here?” It’s a clumsy analogy, maybe, but it was easy to imagine Zen Hospice emerging as a kind of Chez Panisse of death, and Miller as death’s Alice Waters.
Miller, on the other hand, was delivering compassion. His whole life seemed to cling to a certain hard-to-articulate ideal — a determination since his accident, as he put it, ..
to live a full life and stay rooted in real things.
being mortal – aspen institute
19 min – bj starts: palliative care did grow out of hospice.. it was anti medical..
1980s.. medicare got the business of hospice… (6 months or less to live.. that’s all insurance)
palliative: multidisciplinary pursuit of quality of life and mitigation of suffering… still relatively underdeveloped
courtney: insane that it’s a small field.. when you define it that way
bj: yes .. it’s part of life..
the first patient.. is the healthcare system itself.. which is a disease centric model..
25 min – courtney.. two themes… control and suffering..
35 min – on senses
36 min – end of life.. people are worried about 1\ being a burden (role in life dying before death) 2\being at peace 3\ being in pain
37 min – we still have at least one sense.. a great way to stay in touch until very last breath..
45 min q&a
CNN (@CNN) tweeted at 5:20 AM – 19 Jul 2019 :
What a doctor wishes patients knew about the end | BJ Miller, M.D., a hospice & palliative medicine physician, for @CNNOpinion https://t.co/gTtM8j0jMkhttps://t.co/PaJBSRdY4d (http://twitter.com/CNN/status/1152176388180467715?s=17)
You don’t need to be dying to receive palliative care
Don’t wait for your doctor to bring up hospice
It’s OK to laugh
In my book, “A Beginner’s Guide to the End: Practical Advice for Living Life and Facing Death,” someone tells of their stepfather wearing a shirt that read, “I’m so old I can’t find my own nuts,” with a doodle of a squirrel on it. His dying wish was to make his daughter laugh, and it helped both of them immensely.
When we get sick, people around us start censoring themselves. The solemnity is supposed to be a form of kindness, perhaps, but it can feel more like yet another loss, almost a premature death. As patients and caregivers know, illness and its indignities offer plenty of rich material for humor. The joke is only on us if we don’t find some way to laugh back.
Those guardrails on the hospital bed go down
When those guardrails go down, it is possible to cuddle or caress one another. Those moments are about feeling connected, sexually or otherwise, and finding ways to be in that body while you have it. They are about reminding yourself and each other that you are still here, both of you, able to love and be loved. This is how healing works, and it is very much possible to be healed — to be whole — even as your body falls apart.
To the caregivers: Don’t be afraid to leave the room
(for caregiver) our loved one might say or do things that are completely out of character. Behavior ranges from sweet to insufferable. I met an elderly woman at a conference once who nervously relayed the story of her husband hurling strange and vulgar accusations before losing consciousness for good. Now there was trauma on top of sorrow.
(for one dying) It’s almost as if the presence of others — especially deeply loved ones — gets in the way of the dying person’s final step. That big moment may need to happen alone. What dying people seem to need at the very end is to know that the people they love are going to be OK; that life will go on and that you — the person they care for — will be able to take care of yourself. So, the kindest thing you can do is to demonstrate that care by leaving the room when you need to.
If you’ve ever lost a loved one, you know end of life care and grief are gnarly & seemingly endless processes. This is a gorgeous warm chat between BJ Miller & AP that might not make you feel better, but you’ll realise you’re not alone. /Kelly. https://t.co/7cqtWIk2tR
Original Tweet: https://twitter.com/GuiltFemPod/status/1316302589110161408
70 min podcast from may 2019 interview: https://amandapalmer.net/podcast/the-art-of-asking-everything-s1e3-bj-miller-an-expert-on-death-talks-about-life/
16 min – burn unit 3 mos – sterile.. starving for art.. a hellish nature.. screams coming from patients room.. your body screaming at you.. makes you really appreciate when you’ve got it.. ie: magical when i could start sitting up again.. reacquaints you with most basic things.. ie: feeling gravity.. helping me be fascinated by the material world was again
20 min – went into art – for appreciation – the observer of it.. seeing it not creating it.. so enthralled w the raw material of life.. looking at my life as art
21 min – from a driven/inherited path.. to couldn’t imagine a future.. then to a .. just getting thru the day ness got me to a mindfulness
23 min – have to be careful.. using disability as excuse.. used it after graduation because graduation scared me.. what next.. i found that disability world was a creative world.. just needed to be re framed
a: my understanding of disability as art came out of ted
25 min – that relationship between creativity and limitations
30 min – silly and anti therapeutic that we don’t play with our disability devices.. to begin to feel agency again.. like an argyle sock on my arm
33 min – i was boringly as standardized as i could be.. once you get there organically yourself (creative ornament et al).. people were staring at me either way.. i might as well find a way to play with it
37 min – if you absorb that .. i am unique ness.. getting pity for disability.. you just isolate yourself.
a: two sides for unique.. we are all the same.. and completely unique
a: we’re so bad at language.. incredibly limited.. my least favorite is love
39 min – my thesis.. subtext.. how lame/inadequate language/words are as i write about it.. so constantly sandbagging it myself to show that trying to talk about art is so dumb
43 min – a: i feel like at 43 i get how galvanizing (beautiful) loss is .. i never expected things like that .. a miscarriage.. would be a gift.. just a beautiful experience to see what i could do.. what i could see with my eyes.. i think what artists intuit.. is that the dark is really incredibly fruitful.. but what fucks most artists up is you try to fumble around in the dark and pick the fruit up.. and you can’t
46 min – a: in your book ‘death becomes the soil for the beauty’.. so many artists know this.. but so many artists have to manufacture it.. drugs et al.. on a level it’s true.. w/o accessing dark can’t get to the light.. but it eats you
47 min – one of risks is to become overly enamored w the dark.. subtle distinction to appreciate what darkness helps you see.. and the power the dark gives to the light.. if not careful.. overly enamored and clutching to the darkness.. very easy to do.. there’s an important hair to split in there
48 min – seeing.. light here darkness there.. life here death there.. but they’re all interrelated.. i think it’s the tension between the two.. if you need to get hooked on something.. get hooked on the natural tension.. don’t need to manufacture anything.. there’s enough pain .. if you’re paying attention.. no lack of pain
50 min – a: fear of de fertilizing the dark.. working thru the dark doesn’t mean you’ll lose access to it.. there’s no way to escape it
51 min – that’s what i mean.. you don’t need to own it.. protect it
52 min – book/title is huge.. a guide book.. we’ve invented so many ways to distract ourselves from death.. but not really living/alive.. people suffering so much more than they need to.. basic idea is to lift the floor.. access to basic info.. so that the floor of the experience.. so people don’t have to fall as far
56 min – a: on child birth being so horrifying.. we’re so bad at taking care of each other.. birth and death have so many parallels.. so much in common .. who’s allowed in the room et al
57 min – a: your quote: ‘our med system is wired to extend life.. as defined by the presence of a heart beat whenever possible.. no matter how uncomfortable the means’
59 min – birth and death so linked.. both in the natural way and in the artificial way.. the way we separate ourselves from them
1:01 – flaw in all of our systems: independence .. primary skill set (needed) is being a fellow human being ..t
thurman interconnectedness law: when you understand interconnectedness it makes you more afraid of hating than of dying – Robert Thurman
1:06 – my activism is the health care system
sicko ness et al
1:07 – about the book and all the things i had to cut.. all the insights/perspectives of patients that got cut from the reductive process of writing