Endless Knots

Post-Engage with Grace -- Year 5

Though I missed the annual Thanksgiving "Engage with Grace Blog Rally," it was not because I wasn't thinking about it. It's never too late to think about this stuff. In fact, it's never too early. The closer we bring death, the easier life is, at least in my (limited) experience. Having lived through a death where the person embraced the end, I am (eternally) grateful that he didn't fight it. In fact, Jeff Stamps entered his final year with enormous "grace."

Here again are the questions that "Engage with Grace" folks recommend families discuss; here also is their annual preamble to the conversation.

 

The Engage With Grace post for 2012

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.

Goodness, you might be wondering, just what are we getting at and why are we keeping you from stretching out on the couch preparing your belly for onslaught?

Thanksgiving is 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 Thanksgiving 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 as Jeff did - year 4 - #engagewithgrace

Jeff Stamps, age 15, US Junior Nationals Alpine Competition

For the fourth year running, I'm one of hundreds of bloggers staging the Engage with Grace rally to encourage people to think about end-of-life issues. Much has happened in our family since I started participating, including learning the (still) shocking news in May 2010 that one of our central family members -- Jeff Stamps -- was going to die. And then he did on June 11, 2011.

In the course of the 13 months from Jeff's diagnosis of Stage IV pancreatic cancer to his death, we talked about the five questions below quite frankly both with each other and with friends.

By the time Jeff was in the final moments approaching death (in his case, a relatively short period during which he was no longer able to communicate -- about 36 hours in total), I was very clear about his wishes, right down to which room he wanted to die in, what music he wanted playing, which candles I should burn from our collection (Jeff loved candles and lit them every night), and whom he wanted nearby. He even wrote a song for our grandchildren that was sung at his funeral.

As deaths go, Jeff's was a magnificent one. Preparation was everything. Not everyone has the good fortune, if you can call it that, that we did. His diagnosis was unequivocal and medicine had very little to offer (though his willingness to endure treatment, including chemo and very high-tech radiation, may have extended his life). He also was a great and inspiring realist, as his eulogists all said. Here's what our friend Ben Taylor told the Boston Globe: “He decided almost from the moment he received this diagnosis that he wasn’t going to be angry, bitter, or depressed. He was going to accept it and make the most of the time he had left. He showed us all how to die and was an inspiration to every one of us.’’

Since Jeff died, I've talked to many others who've lost spouses (and parents, children, relatives, dear friends and colleagues). Many loved ones died suddenly, including those with terminal cancer where the patient and family had not been clearly told that death could be come at any moment. Some admit they were in denial. And we all know cases where someone didn't want to know that their illness was terminal. Because sudden death is so common ("she went upstairs to get a book and had an aneurysm;" "he had a massive heart attack while walking to work;" etc), we need to bring death into our line of sight, into the middle of our conversations.

For all the blather in our society about "death and dying," I've experienced very little natural conversation about it. We're still wincing and avoiding the topic. Try listening for it in the course of a day, the course of a week, and see how often it comes up. Let's bring it up.

Meanwhile, read on for the official text of the Engage with Grace blog rally, includuing the five critical questions:

 

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.

 

Engage with Grace - Year 3

When this blog rally (now in its third year) began, I instantly decided to participate. In the array of things we have to think about, how we die is important. And, having had quite a few deaths (some here and here) among family and friends, I wanted to contribute in any small way to those facing end-of-life issues.

Little did I realize how soon its purpose would become manifest in our family. In the past few months, we've tackled all the questions on The One Slide below. And, thanks to the terrific "Art of Dying Conference" at Menla Mountain in early October, we've started into detailing the fine points. Friends, the kind of work that our family is engaged in is sad, difficult, and strangely wonderful. So much falls away at moments like these and the inner, often silent, parts of ourselves speak, sometimes in ways that make us laugh, others as nightmares.

Below, I'm reproducing the text that those of us in the rally all are posting. I can't recommend answering the questions on the slide at the Thanksgiving table but I do suggest that in your soon-to-come trytophan stupor you begin the conversation. In our experience, it will be easier for some people than others. Each of us has to answer the questions for ourselves eventually. Don't put it off until you're so consumed with sadness that you can't think clearly.

And, in the interest of levity, which has to be part of this, a photo I snapped recently at the hospital where we spend too much time these days.

 

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.

The problem with moving too quickly - Engage with Grace 2

Bloggers will understand. In my haste to throw up the previous post before doing something else that was no doubt vitally important, I failed to look at the slide I included, which was for fun during last year's Engage with Grace campaign. The real slide, with the right questions for your family to discuss relative to end-of-life issues is this one. Sorry (and I'm slowing down, she says, while typing like a maniac).

Engaging with Grace - encore performance

Last Thanksgiving weekend, many of us 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.

Our 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 now stands sentry on their fridge.

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

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

 

 

How gracefully did we engage?

The blogosphere-wide effort to encourage people to talk about end-of-life issues, discussed here and here and originating at Engage with Grace (kudos majeure to Alexandra Drane), was such a success that somewhere in excess of 100 bloggers participated and major news media, including Boston Globe (as mentioned earlier), USA Today, Wall Street Journal, and Business Week, reported on it. Very pleased that a number of writer friends, including Maryanne Stahl, Xujun Eberlein, and Scott Doyle, along with colleagues (Virginia Adamson, for example), also interrupted their vacations from writing and work to post.

Networkers, here's what's impressive about this: I first heard about the campaign just a few days before it launched, as in four days, via an email from Paul to a handful of people, most of whom are in healthcare. Obvious why they'd be interested, of course, but the deep human place that this touches caused it to spread quickly. I ended up talking with a number of people about the questions themselves, including my brother whom I'd never discussed this with at all.

Next step, according to the project, is for all of us speakers and presenters to add the slide to our presentations, regardless of our topics. Haven't figured that out yet for myself, especially since I've been going slideless.

Great initiative that demonstrates the power of collaboration and I hope Alex turns it into a book.

Engage with grace: The one slide project

Many bloggers (see "Talking turkey about death" by Kay Lazar in Nov 26, '08 Boston Globe) are staging a "blog rally" today to encourage conversation about a very difficult topic: how we want to die. What follows is the same text that appears on many other blogs (see backstory here). Please pick this up and pass along to fellow bloggers, asking them too to post, and to use Thanksgiving as a time to talk about something uncomfortable but oh-so-at-the-heart-of-it-all. This touches me deeply. My mother wanted to die at home. She did not. I know the same is true for many reading and this is one tiny way we all can help redress ancient and possible future hurts. Here also is the single slide, described and linked below:

We make choices throughout our lives - where we want to live, what types of activities will fill our days, with whom we spend our time. These choices are often a balance between our desires and our means, but at the end of the day, they are decisions made with intent. But when it comes to how we want to be treated at the end our lives, often we don't express our intent or tell our loved ones about it.

This has real consequences. 73% of Americans would prefer to die at home, but up to 50% die in hospital. More than 80% of Californians say their loved ones "know exactly" or have a "good idea" of what their wishes would be if they were in a persistent coma, but only 50% say they've talked to them about their preferences.But our end of life experiences are about a lot more than statistics. They're about all of us.

So the first thing we need to do is start talking. Engage with Grace:The One Slide Project was designed with one simple goal: to help get the conversation about end of life experience started. The idea is simple: Create a tool to help get people talking. One Slide, with just five questions on it. Five questions designed to help get us talking with each other, with our loved ones, about our preferences. And we're asking people to share this One Slide - wherever and whenever they can--at a presentation, at dinner, at their book club. Just One Slide, just five questions.

Let's start a global discussion that, until now, most of us haven't had. Here is what we are asking you: Download The One Slide and share it at any opportunity - with colleagues, family, friends. Think of the slide as currency and donate just two minutes whenever you can. Commit to being able to answer these five questions about end of life experience for yourself, and for your loved ones. Then commit to helping others do the same. Get this conversation started.

Let's start a viral movement driven by the change we as individuals can effect...and the incredibly positive impact we could have collectively. Help ensure that all of us - and the people we care for - can end our lives in the same purposeful way we live them. Just One Slide, just one goal. Think of the enormous difference we can make together.

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

Engage with grace beginning Nov 26

Dear friends,

I'd be hard put to list all the causes and groups I'm asked to join, both on Facebook and via that old method, email. Something's come through in the past few days that makes me want to "join," in the fullest sense of the word.

Engage with Grace: The One Slide Project is an astonishingly simple idea that literally touches everyone. Alexandra ("Alex") Drane, whose sister-in-law almost died in the hospital (had her family been less attentive - and at age 32 of glioblastoma* seven months post diagnosis - grab your tissues and see the backstory) has set in motion a talking/blogging/thinking campaign to get us to deeply consider how we want to die.

Alex's one slide has five conversation-starter questions about dying, really simple stuff like: given the choice, do you want to die at home or in the hospital; do you want medical intervention or not...etc (see below) - and then she did the networking thing. Now bloggers have agreed to post her message about the campaign as a Thanksgiving project. We're all posting the same message - with a lead-in of our choosing on Nov 26 - and leaving it up throughout the holiday weekend (yay! an enforced break from blogging - my family will be so happy).

There's also a great short video (as in a minute) with Alex explaining how she used the very best of networking principles to keep this really really simple.

I have lots of blogger friends reading here, more than I know about, and you've got lots of friends so...please direct them to the group on Facebook and/or ask them to contact me and I'll send the note that we're all posting.

Finally, why does this touch me when I let so much else pass by without really "joining?" My mother died in the hospital, which she did not want to do, her "Do Not Resuscitate" order was not enforced...and my best friend, Linda, who wanted to die at home, also died in the hospital...and, as many of my close friends here know, her husband died of *glioblastoma eighteen months later. So I connect in that beating, pulsating, deepest place with what Alex is doing.

Love,

Jessica