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..
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
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..
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:
a nother way.. deep/simple/open enough
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/gTtM8j0jMk https://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.