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.