Wednesday, November 21, 2012

Engage With Grace

@engagewithgrace #blogrally12 Once again, a group of us (including Matthew Holt, Alexandra Drane and our friends) are launching the Engage With Grace blog rally to coincide with Thanksgiving weekend. As in previous years, we’re suggesting that people who want to join the rally simply post the attached “ready made” blog content starting tonight, November 21, and leave it up through the entire weekend (consider it a much-deserved break from blogging for a couple days).

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.   


Papa Jim said...

Thank you Paul. I appreciated your analogy to the effort put into the beginning of life. These are hard questions... and even if you have discussed them, the actual bedside decisions I have found are still very tough. The more they are talked about and aired with the whole family/ friends, the easier it is to be assured that you are doing the right thing for your loved one. Thanks for pointing out that today is a great chance to do this.

Monica said...

in my professional role, I have watched many families struggle with decision-making on behalf of their loved one. They will say,' we don't know what they would have wanted.' The decision is about giving the Gift of Life- organ donation.
I thoroughly support the idea of designing a beautiful end, but this should include the question- 'Have I made a decision about organ donation and do my family know my wishes?'

Gr8Life said...

Hi Paul,
I didn't see a place on your blog where I could e-mail you so I am leaving a comment to ask you a question I am curious as to what your thoughts will be.
My 4 year old son who has a terminal illness was recently in the hospital to have surgery and ended up having a near death experience do to negligence of the Dr.'s and staff. I believe we have a solid case of negligence that I think would be an easy win for us.
But my point of suing the hospital would be to have changes made in how the Resident Dr.'s & Attending Dr.'s communicate to prevent such a issue from recurring and to have some other changes made. After meeting with some of the administration recently I am not under the impression that despite the apology for what happened that anything would change unless we do sue the hospital.
My question to you is how would you go about getting changes made without filing a lawsuit? How do you hold the medical people responsible for their lack of action if the administration will not? Money will not change what happened but is it possible to get administration to make changes without suing the hospital? And how are the Resident Dr.'s held responsible when the administration does nothing to reprimand other than having a stern talk with the resident? To me a stern talk is not adequate.

Here is a link to my blog if you want to read about the negligence that occured. Thank YOU

Paul Levy said...

This an eerily familiar feeling to the Lewis Blackman story and others like it. Helen Haskell, his mother, would likely be a good person to advise you on how to proceed. Go to Facebook to the Partnership with Patients page (, and post something there.