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

A Patient's Story

 "If I have learned anything, it is that we never know when, how, or whom a serious illness will strike. If and when it does, each one of us wants not simply the best possible care for our body but for our whole being.’’  ~ Kenneth B. Schwartz

Seventeen years ago a seminal piece was published by the Boston Globe.  It was entitled: A Patient's Story, written by Boston healthcare attorney Ken Schwartz.  Ken had been diagnosed with stage 4 lung cancer and was now facing the end of his life in 1995.  Through his eloquent prose, Ken taught us all that often it is the compassion of the health care provider, the humanness of the experience, that is as important as the medication and high-tech treatments that we offer our patients. The Schwartz Center for Compassionate Healthcare was founded after Ken's death and has been doing wonderful work on ever since. Little did I know when I read A Patient's Story in 1995 that it would reflect and inform my own experiences as a mother of a terminally ill adolescent and ultimately would redirect my professional life as a passionate advocate of the integration of compassion and empathy into health care environments, for both the patient and the caregiver.

Today, the Boston Globe reflects on the past seventeen years since the publication of A Patient's Story, and of The Schwartz Center for Compassionate Healthcare's work on supporting and improving compassionate caregiving. Click here to read the article: Finding Healing for the Healers by Helen Shen.

I would love to hear your stories about compassionate caregiving or perhaps opportunities that were lost. How can we work together to ensure compassionate and empathic healthcare?  Please feel free to post your thoughts and comments on my blog.

Vicki Kennedy's Reflections on Compassionate Care

I had the pleasure of hearing Vicki Kennedy, the wife of the late Senator Ted Kennedy, give a very moving speech at the 8th annual Celebration of Women in Healthcare hosted by the Kenneth Schwartz Center on May 26. Mrs. Kennedy spoke eloquently, but more importantly authentically from her heart, when she reflected on her caregiving journey and the healing power of compassionate communication between providers and patients. Click here to read an article about the event.