Engage with Grace this Thanksgiving

Each Thanksgiving since 2008 I have donated my blog to an initiative called: Engage with Grace. This year is no exception. There is never the perfect opportunity to talk about end of life issues and it may seem especially incongruous on a holiday set aside for giving thanks, yet why not Thanksgiving? End of life discussions shouldn't be one size fits all or even one time conversations, they should evolve and change as life changes. They are talks from the heart, conversations about the values we hold dear, an opportunity to share our life narrative with our loved ones -- what better time than Thanksgiving weekend to share this gift of listening and sharing? So I invite you to do something a bit unconventional this Thanksgiving, perhaps begin a new tradition, alongside the green bean casserole, share Engage with Grace and let the conversation begin.
Happy Thanksgiving,
Pam


Most of us find ourselves pretty fascinating… flipping through photos and slowing down for the ones where we’re included, tweeting our favorite tidbits of information, facebook-ing progress on this or that…

We find other people captivating as well.  In fact, there’s a meme going around on facebook where people share a handful of things that most people don’t know about them – and there’s a great joy in learning these tidbits about the friends and family we think we know so well.
This Thanksgiving, we’re asking our friends and family to try this exercise, but with a twist – we want to know how they’d answer just five questions on their end-of-life preferences.




What? Are you CRAZY? Talk about how you’d want to die over Thanksgiving?  Yup – that’s exactly what we’re suggesting.   You know why?  Because this is a conversation you absolutely want to have exactly when you DON’T need to have it… and it’s a conversation you need to have with your loved ones.   Our hope for you this Thanksgiving is that you’ll have the luxury of checking both those boxes.

As humans, we’re all pretty fascinating, and exploring what matters to each of us under different circumstances can be a captivating conversation…and captivating conversations are part of what turkey dinners are all about.  It’s also a vital one – there will be few times in our lives where ‘getting it right’ is more important than at the end of them.

There are also few greater gifts you can give to your loved ones, and they to you, than making sure these lives we are living with such ferocious intent have the luxury of ending the same way.
Engage with Grace is a way to help get the conversation about end of life started – a way to Engage in this topic with Grace.  Just five simple questions about our end of life preferences that we can all commit to being able to answer – for ourselves, for our loved ones.  Take a quick look – do you know how you would answer?  Could you answer for your loved ones?   There is no wrong answer – It’s only wrong if you don’t know your answers … or if you haven’t shared them.

Coming together over the dinner table to talk about the important stuff is part of our DNA…and it’s where so much of the good stuff happens.  We connect, we share, we learn, we laugh, we fall in love, out of love, we fight and make up, we celebrate, we (maybe even) cry.  If this Thanksgiving turns out not to be your thing, then pick another dinner.  Check out the genius Death over Dinner movement started by our dear friend Michael Hebb to help make that happen.  Thousands of dinners happening across the country – from cool hipsters to the very dearest grandparents coming together to think hard, eat well, and make sure we nail this end of life thing by making sure we’re talking about it.  We double dog dare you to have a Death Dinner – and not enjoy it.

Know what else?  What we want at the end of our lives often changes as we go through them… a mum of toddlers may find she’d opt for more intensive treatment options, while a great-grandfather may feel more comfortable choosing quality of life related treatment… so have this conversation once, then keep having it.

None of us are planning for anything less than living forever – so until one of us is smart enough to make that happen (go Google!) – let’s at least commit to this: we live our life with intent – we can end our life with that same honor.  70% of us want to die at home, only 30% of us do.  Each of us will only die once – make sure you get to die the way you want. Then make sure that’s a gift you give to your loved ones as well.

Just five questions.  Just get started.

Could there be a more important conversation to have this Thanksgiving? Nope. Maybe that’s why they call it talkin’ turkey.

Let's Start a Revolution: Engage with Grace

For several years I have been pleased to donate my blog space over the Thanksgiving weekend to a wonderful project: Engage with Grace. For me end of life discussions are not an abstract concept, as I have journeyed with both family members and clients down this path.  Talking about end of life is not easy, but it does not need to be the taboo subject that it is currently in our culture.  If in less than a generation we have shifted our cultural norms on other topics that certainly were never discussed in the past: cancer, erectile dysfunction, birth control, and feminine hygiene products then certainly we can start a revolution to normalize the discussion about end of life decision making!

This year I am expanding my participation in Engage with Grace to include the entire holiday season, not only Thanksgiving weekend.  Let's begin changing the culture by making it a priority to ask and listen to your friends and family about end of life wishes before we ring in 2013.

Engage With Grace This Holiday Season

"One of our favorite things we ever heard Steve Jobs say is… ‘If you live each day as if it was your last, someday you'll most certainly be right.’

We love it for three reasons:

1. It reminds all of us that living with intention is one of the most important things we can do.
2. It reminds all of us that one day will be our last. 
3. It’s a great example of how Steve Jobs just made most things (even things about death – even things he was quoting) sound better.

Most of us do pretty well with the living with intention part – but the dying thing? Not so much. 

And maybe that doesn’t bother us so much as individuals because heck, we’re not going to die anyway!! That’s one of those things that happens to other people….

Then one day it does – happen to someone else.  But it’s someone that we love.  And everything about our perspective on end of life changes.  

If you haven’t personally had the experience of seeing or helping a loved one navigate the incredible complexities of terminal illness, then just ask someone who has.  Chances are nearly 3 out of 4 of those stories will be bad ones – involving actions and decisions that were at odds with that person’s values.  And the worst part about it? Most of this mess is unintentional – no one is deliberately trying to make anyone else suffer – it’s just that few of us are taking the time to figure out our own preferences for what we’d like when our time is near, making sure those preferences are known, and appointing someone to advocate on our behalf. 

The holidays are a time for gathering, for communing, and for thinking hard together with friends and family about the things that matter.  Here’s the crazy thing - in the wake of one of the most intense political seasons in recent history, one of the safest topics to debate around the table this year might just be that one last taboo: end of life planning. And you know what? It’s also one of the most important. 

Here’s one debate nobody wants to have – deciding on behalf of a loved one how to handle tough decisions at the end of their life. And there is no greater gift you can give your loved ones than saving them from that agony.  So let’s take that off the table right now, this weekend.  Know what you want at the end of your life; know the preferences of your loved ones.    Print out this one slide with just these five questions on it. 

Have the conversation with your family.  Now.  Not a year from now, not when you or a loved one are diagnosed with something, not at the bedside of a mother or a father or a sibling or a life-long partner…but NOW.  Have it this holiday season when you are gathered together as a family, with your loved ones.  Why? Because now is when it matters. This is the conversation to have when you don’t need to have it.  And, believe it or not, when it’s a hypothetical conversation – you might even find it fascinating.   We find sharing almost everything else about ourselves fascinating – why not this, too?   And then, one day, when the real stuff happens?  You’ll be ready. 

Doing end of life better is important for all of us.  And the good news is that for all the squeamishness we think people have around this issue, the tide is changing, and more and more people are realizing that as a country dedicated to living with great intention – we need to apply that same sense of purpose and honor to how we die. 

One day, Rosa Parks refused to move her seat on a bus in Montgomery County, Alabama.  Others had before. Why was this day different?  Because her story tapped into a million other stories that together sparked a revolution that changed the course of history.

Each of us has a story – it has a beginning, a middle, and an end.  We work so hard to design a beautiful life – spend the time to design a beautiful end, too.  Know the answers to just these five questions for yourself, and for your loved ones.  Commit to advocating for each other.  Then pass it on." 

Let's start a revolution: Engage with Grace
 

Engage with Grace this Thanksgiving

For the past few years I have joined in the annual Thanksgiving blog rally, Engage with Grace: One Slide Project. This year, however, Engage with Grace holds special meaning and remembrance for me.  

On November 21, our community of Concord, Massachusetts lost an incredible teacher and mentor, David Prifti.  David, a gifted artist who taught photography at Concord-Carlisle High School, had the unique quality of connecting with each student to make them feel like they were the most amazing, talented kid in the world.  But more than that, David taught his students how to navigate life with grace, dignity, hope and humor.  

During the past two and a half years, as David lived with the diagnosis of pancreatic cancer, he allowed us all to become his students as he shared his journey through his widely read blog, Prifti News. Last month he shared with his blog readers his decision to enter hospice care and determine as best he could that the end of his life would be filled with the same beauty, grace and gentleness that had always been central to his life. One of the many gifts that David left with us is the recognition of the importance of communicating with others, expressing our wishes for the end of life.  

And so, this Thanksgiving, I dedicate my participation in Engage with Grace to David Prifti, in gratitude for teaching us all the meaning of grace, hope and peace.  

May your Thanksgiving be filled with mindful moments and shared conversations with those you love.
Pam


Engage with Grace 2011: 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 the Engage with Grace site, www.engagewithgrace.org), 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 ever y 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.

Engaging with Grace this Thanksgiving

As you gather together with family and friends over the Thanksgiving holiday, what are you going to talk about? I am guessing that the topic end of life choices will not be on the list of conversation starters. But perhaps it can and should be. While none of us knows the exact choices we will need to make for ourselves or a loved one at the end of life, we can open an ongoing conversation about what is important for us, what we value, and what are our wishes. As someone who has had to face end of life choices in both my professional life and in my personal life, beginning the conversation around the dining room table is much more compassionate, and empowering than beginning the dialog in the intensive care unit.

For the past three years, I have been participating in the Engage with Grace Blog Rally at the invitation of Paul Levy, CEO and President of Beth Israel Deaconess Hospital in Boston and am thrilled to see that the number of health care bloggers supporting this effort has grown exponentially each year. As we consider the exciting possibilities of participatory medicine and an increased desire for more shared decision making between health care providers and patients/families, we also must recognize that we need to ask about our loved ones wishes for medical care and intervention; understanding that they may not be identical to our own. Please join me and my family as we Engage with Grace this Thanksgiving with one slide and five questions.

With gratitude,
Pam

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.

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 on “letting go” – 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.

Engage with Grace: One Slide Project

Let Me Down Easy....What is Grace?

What is grace?...That is the overarching theme and question that resonates in Anna Deavere Smith's new one woman dramatic work Let Me Down Easy: a play in evolution currently being performed through October 11 at the American Repertory Theatre (Loeb Drama Center Harvard Square) in Cambridge, MA. I had the incredible experience of being in the audience on September 16 to witness and share in the journey Anna leads us through during the two hour performance. Through the stories and voices as varied as Ann Richards, former governor of Texas to Matthieu Ricard, a Buddhist Monk; from Jean Damascene Uwikijie, a Hutu prisoner in Rwanda to Dr. Phil Pizzo, Dean of Stanford Medical School; we are confronted with looking at ways in which our bodies and souls are both resilient and vulnerable. A sense of wonder, beauty, stamina, fear, grief and courage shine through all the vignettes...a snapshot into simply being human. "The only whole heart is a broken one, it lets the light in..."says the voice of Rabbi David Wolpe in Let Me Down Easy. Perhaps this is the essence of grace, to open oneself to the frailty and resilience of the human spirit with compassion and awe. What does grace mean to you? I would love to hear from you!