Engage With Grace 2011: Occupy With Grace

The term “Blog Rally” was coined in 2008 with the phenomenon of concerted blogging in support of the movement called, “Engage with Grace: The One Slide Project.” Engage With Grace was organized to encourage family members to discuss what is important to them with respect to end-of-life care issues. The timing coincides with the annual American Thanksgiving holiday weekend. The idea being to capitalize on the fact that many families gather together in particular over Thanksgiving.

This is a movement you can easily get behind in person if you are an advocate for good patient centered health care, which you likely are if you are reading this blog. So donate your blog, Facebook update, Twitter account (#EWG) to Engage With Grace this holiday weekend. And then put your money where your mouth is and bring it up yourself while your family is together.

Here is the this year’s post from the Alexandra Drane and the Engage With Grace Team:

Occupy With Grace
Once again, this Thanksgiving we are grateful to all the people who keep this mission alive day after day: to ensure that each and every one of us understands, communicates, and has honored their end of life wishes.

Seems almost more fitting than usual this year, the year of making change happen. 2011 gave us the Arab Spring, people on the ground using social media to organize a real political revolution. And now, love it or hate it – it’s the Occupy Wall Street movement that’s got people talking.

Smart people (like our good friend Susannah Fox) have made the point that unlike those political and economic movements, our mission isn’t an issue we need to raise our fists about – it’s an issue we have the luxury of being able to hold hands about.

It’s a mission that’s driven by all the personal stories we’ve heard of people who’ve seen their loved ones suffer unnecessarily at the end of their lives.

It’s driven by that ripping-off-the-band-aid feeling of relief you get when you’ve finally broached the subject of end of life wishes with your family, free from the burden of just not knowing what they’d want for themselves, and knowing you could advocate for these wishes if your loved one weren’t able to speak up for themselves.

And it’s driven by knowing that this is a conversation that needs to happen early, and often. One of the greatest gifts you can give the ones you love is making sure you’re all on the same page. In the words of the amazing Atul Gawande, “you only die once!” Die the way you want. Make sure your loved ones get that same gift. And there is a way to engage in this topic with grace!

Here are the five questions, read them, consider them, answer them (you can securely save your answers at the Engage with Grace site), share your answers with your loved ones. It doesn’t matter what your answers are, it just matters that you know them for yourself, and for your loved ones. And they for you.

We all know the power of a group that decides to assemble. In fact, we recently spent an amazing couple days with the members of the Coalition to Transform Advanced Care, or C-TAC, working together to channel so much of the extraordinary work that organizations are already doing to improve the quality of care for our country’s sickest and most vulnerable.

Noted journalist Eleanor Clift gave an amazing talk, finding a way to weave humor and joy into her telling of the story she shared in this Health Affairs article. She elegantly sums up (as only she can) the reason that we have this blog rally every year:

For too many physicians, that conversation is hard to have, and families, too, are reluctant to initiate a discussion about what Mom or Dad might want until they’re in a crisis, which isn’t the best time to make these kinds of decisions. Ideally, that conversation should begin at the kitchen table with family members, rather than in a doctor’s office.

It’s a conversation you need to have wherever and whenever you can, and the more people you can rope into it, the better! Make this conversation a part of your Thanksgiving weekend, there will be a right moment, you just might not realize how right it was until you begin the conversation.

This is a time to be inspired, informed – to tackle our challenges in real, substantive, and scalable ways. Participating in this blog rally is just one small, yet huge, way that we can each keep that fire burning in our bellies, long after the turkey dinner is gone.

Wishing you and yours a happy and healthy holiday season. Let’s Engage with Grace together.

To learn more please go to www.engagewithgrace.org.

This post was developed by Alexandra Drane and the Engage With Grace team.

Poems for November 2011

Linda Hogan
(1947 – )

The Way In

Sometimes the way to milk and honey is through the body.
Sometimes the way in is a song.
But there are three ways in the world: dangerous, wounding,
and beauty.
To enter stone, be water.
To rise through hard earth, be plant
desiring sunlight, believing in water.
To enter fire, be dry.
To enter life, be food.

–

Ronald Wallace
(1945 – )

Obituary

Just once, you say,
you’d like to see
an obituary in which
the deceased didn’t succumb
after “a heroic struggle” with cancer,
or heart disease, or Alzheimer’s, or
whatever it was
that finally took him down.
Just once, you say,
couldn’t the obit read:
He got sick and quit.
He gave up the ghost.
He put up no fight at all.
Rolled over. Bailed out.
Got out while the getting was good.
Excused himself from life’s feast.
You’re making a joke and
I laugh, though you can’t know
I’m considering exactly that:
no radical prostatectomy for me,
no matter what General Practitioner
and Major Oncologist may say.
I think, let that walnut-sized
pipsqueak have its way with me,
that pebble in cancer’s slingshot
that brings dim Goliath down.
So, old friend, before I go
and take all the wide world with me,
I want you to know
I picked up the tip.
I skipped the main course,
I’m here in the punch line.
Old friend, the joke’s on me.

Poems for January 2011

Kim Addonizio
(1954 – )

New Year’s Day

The rain this morning falls
on the last of the snow

and will wash it away. I can smell
the grass again, and the torn leaves

being eased down into the mud.
The few loves I’ve been allowed

to keep are still sleeping
on the West Coast. Here in Virginia

I walk across the fields with only
a few young cows for company.

Big-boned and shy,
they are like girls I remember

from junior high, who never
spoke, who kept their heads

lowered and their arms crossed against
their new breasts. Those girls

are nearly forty now. Like me,
they must sometimes stand

at a window late at night, looking out
on a silent backyard, at one

rusting lawn chair and the sheer walls
of other people’s houses.

They must lie down some afternoons
and cry hard for whoever used

to make them happiest,
and wonder how their lives

have carried them
this far without ever once

explaining anything. I don’t know
why I’m walking out here

with my coat darkening
and my boots sinking in, coming up

with a mild sucking sound
I like to hear. I don’t care

where those girls are now.
Whatever they’ve made of it

they can have. Today I want
to resolve nothing.

I only want to walk
a little longer in the cold

blessing of the rain,
and lift my face to it.

–

Sharon Olds
(1942 – )

His Stillness

The doctor said to my father, “You asked me
to tell you when nothing more could be done.
That’s what I’m telling you now.” My father
sat quite still, as he always did,
especially not moving his eyes. I had thought
he would rave if he understood he would die,
wave his arms and cry out. He sat up,
thin, and clean, in his clean gown,
like a holy man. The doctor said,
“There are things we can do which might give you time,
but we cannot cure you.” My father said,
“Thank you.” And he sat, motionless, alone,
with the dignity of a foreign leader.
I sat beside him. This was my father.
He had known he was mortal. I had feared they would have to
tie him down. I had not remembered
he had always held still and kept quiet to bear things,
the liquor a way to keep still. I had not
known him. My father had dignity. At the
end of his life his life began
to wake in me.

Engage With Grace

Things we are grateful for this year

For three years running now, many of us bloggers have participated in what we’ve called a “blog rally” to promote Engage With Grace – a movement aimed at making sure all of us understand, communicate, and have honored our end-of-life wishes.

The rally is timed to coincide with a weekend when most of us are with the very people with whom we should be having these unbelievably important conversations – our closest friends and family.

At the heart of Engage With Grace are five questions designed to get the conversation about end-of-life started. We’ve included them at the end of this post. They’re not easy questions, but they are important – and believe it or not, most people find they actually enjoy discussing their answers with loved ones. The key is having the conversation before it’s too late.

Engage With Grace, theoneslide

This past year has done so much to support our mission to get more and more people talking about their end-of-life wishes. We’ve heard stories with happy endings ~ and stories with endings that could’ve (and should’ve) been better. We’ve stared down political opposition. We’ve supported each other’s efforts. And we’ve helped make this a topic of national importance.

So in the spirit of the upcoming Thanksgiving weekend, we’d like to highlight some things for which we’re grateful.
Thank you to Atul Gawande for writing such a fiercely intelligent and compelling piece, Letting Go: What Should Medicine Do When It Can’t Save Your Life – it is a work of art, and a must read.

Thank you to whomever perpetuated the myth of “death panels” for putting a fine point on all the things we don’t stand for, and in the process, shining a light on the right we all have to live our lives with intent – right through to the end.

Thank you to TEDMED for letting us share our story and our vision.

And of course, thank you to everyone who has taken this topic so seriously, and to all who have done so much to spread the word, including sharing The One Slide.

(To learn more please go to www.engagewithgrace.org. This post was written by Alexandra Drane and the Engage With Grace team. )

Poems for February 2010

Alicia Suskin Ostriker (1937 – )

In Sickness and Health

My friend whose husband
will soon succumb to cancer
loves to lie next to him at night

to smell him and feel the warm
stomach and flanks through his pajamas
the two of them are glad

he can still walk the streets of New York
still get tickets to the Philharmonic on impulse
they never fight any more

—

Margaret Atwood (1939- )

February

Winter. Time to eat fat
and watch hockey. In the pewter mornings, the cat,
a black fur sausage with yellow
Houdini eyes, jumps up on the bed and tries
to get onto my head. It’s his
way of telling whether or not I’m dead.
If I’m not, he wants to be scratched; if I am
He’ll think of something. He settles
on my chest, breathing his breath
of burped-up meat and musty sofas,
purring like a washboard. Some other tomcat,
not yet a capon, has been spraying our front door,
declaring war. It’s all about sex and territory,
which are what will finish us off
in the long run. Some cat owners around here
should snip a few testicles. If we wise
hominids were sensible, we’d do that too,
or eat our young, like sharks.
But it’s love that does us in. Over and over
again, He shoots, he scores! and famine
crouches in the bedsheets, ambushing the pulsing
eiderdown, and the windchill factor hits
thirty below, and pollution pours
out of our chimneys to keep us warm.
February, month of despair,
with a skewered heart in the centre.
I think dire thoughts, and lust for French fries
with a splash of vinegar.
Cat, enough of your greedy whining
and your small pink bumhole.
Off my face! You’re the life principle,
more or less, so get going
on a little optimism around here.
Get rid of death. Celebrate increase. Make it be spring.

Engage with Grace 2009

Some conversations are easier than others.

Last year during Thanksgiving weekend, many bloggers participated in the first documented “blog rally” to promote Engage With Grace, a movement aimed at having all of us understand and communicate our end-of-life wishes.

It was a great success, with over 100 bloggers in the healthcare space and beyond participating and spreading the word. Plus, it was timed to coincide with a weekend when most of us are with the very people with whom we should be having these tough conversations – our closest friends and family.

The original mission – to get more and more people talking about their end of life wishes – hasn’t changed. But it’s been quite a year – so we thought this holiday, we’d try something different.

A bit of levity.

At the heart of Engage With Grace are five questions designed to get the conversation started. We’ve included them at the end of this post. They’re not easy questions, but they are important.

To help ease us into these tough questions, and in the spirit of the season, we thought we’d start with five parallel questions that ARE pretty easy to answer:

Silly? Maybe. But it underscores how having a template like this – just five questions in plain, simple language – can deflate some of the complexity, formality and even misnomers that have sometimes surrounded the end-of-life discussion.

So with that, we’ve included the five questions from Engage With Grace below. Think about them, document them, share them.

Over the past year there’s been a lot of discussion around end of life. And we’ve been fortunate to hear a lot of the more uplifting stories, as folks have used these five questions to initiate the conversation.

One man shared how surprised he was to learn that his wife’s preferences were not what he expected. Befitting this holiday, The One Slide www.engagewithgrace.org now stands sentry on their fridge.

Wishing you and yours a holiday that’s fulfilling in all the right ways.

You can join the Engage with Grace group on Facebook.

(This post was written by Alexandra Drane and the Engage With Grace team. )