Grace, Love, and Caregiving Choices

Full disclosure, I am a faithful listener to WBUR in Boston and I write for WBUR's Cognoscenti Page. I especially love On Point with Tom Ashbrook -- I have been known to have "parking lot moments" when I sit in my car, radio on, engine running in my office building parking lot, just to finish listening to a topic Tom and one of his guests are discussing. Tom's inquisitive questions and gentle yet focused interviewing style have kept me company on many mornings. Like many, I was saddened to hear that he was taking an immediate leave of absence to care for his wife who is very ill. Through this intentional choice of following his heart and his compassion, Tom has become a teacher to the rest of us that it is OK to say that family caregiving is a priority and to step away, albeit temporarily, from the demands of work. Tom posted a poignant and powerful letter to explain his decision yesterday, and I am sure I am not alone in feeling gratitude that he chose to share an
explanation of this difficult time with such grace, love and compassion.

Tom, as a male, has also taken bold move by stepping into the caregiving role. Statistics show that the vast majority of family caregivers during chronic illness and end of life are women. Often these women are attempting to work outside the home and be family caregivers at the same time, because of a lack of sick time or leaves of absence in their workplace. Tom's willingness to shine light on the need for families to have the ability take time away from their paid work for the well-being of their family is a teachable moment for all of us. Tom Ashbrook has been able to make this compassionate choice for himself, his wife and family is because he has been granted a leave of absence from his employer. As the Massachusetts election results rolled in on Wednesday morning and ballot question 4 (earned sick time) was approved by voters, it made me think of Tom and his family and gave me hope that another family facing end of life issues would now also be more able to make a similar compassionate choice without financial ruin.

To live in a compassionate society, we must be compassionate beings. Thank you to Tom Ashbrook, his wife Danielle, and their family for demonstrating what grace, love, and caregiving choices look like. I wish them peace, hope, and grace today and in the days ahead, and I will be welcome Tom back into my radio-listening life when he is ready to return.

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.