Engaging with Grace
This is a story about the power of ideas to go viral.
A few years ago we (that’s Matt Holt, Founder of Health 2.0 and Alexandra Drane, President of Eliza Corporation) met for dinner – the kind of dinner where food is the side and the main course is a fully engrossing conversation that barrels along a mile a minute. We wound our way onto the topic of end of life care – and jointly bemoaned how terribly our country deals with it. We shared statistics – facts like 70% of people want to die at home, but only 30% do. And then – because life is about a lot more than statistics, we started sharing our stories.
These are the stories that – we’ve since learned – so many people have. Stories of weak, aging parents who kept getting medical care when the prognosis suggested otherwise. Stories of families torn apart because they couldn’t agree on a care plan for a loved one who couldn’t speak for themselves. And my story, the story of my sister-in-law, Za, which you can see here.
Based on this conversation, we launched a non-profit, viral movement called Engage With Grace. The idea behind Engage With Grace is simple – we as a nation need a tool to help get these conversations started. Something that can be shared easily with family, friends, colleagues – anyone really. At the heart of the movement is what we call The One Slide – just five questions about our care preferences each of us should be able to answer for ourselves, and for our loved ones, before it is too late to decide. Preferences we should then commit to supporting – no matter what the opposition. And we asked a whole lot of people to answer the questions for themselves, and then spread the word.
The response has been wonderful, and humbling. People are willing — even aching – to have these conversations, and they are grateful to have a way to broach the topic in a non-threatening way.
It’s this kind of public engagement spirit that we are honored to bring to C-TAC. Though we haven’t spent a dime on marketing, it’s estimated that over a million people have been exposed to Engage With Grace and The One Slide – whether through events, our annual blog rally (the first of its kind, as far as we can tell) that’s gotten hundreds of bloggers to simultaneously post Engage With Grace-related content over Thanksgiving weekend, clinical textbooks and training programs, or the mainstream media.
And here’s what we’ve learned from people who have shared their experiences:
It’s not an easy conversation… but personal stories help broach the topic
• “Your story in the Boston Globe a day before Thanksgiving could not have come at a better time. I had decided to talk to my aging father about his wishes for the end of his life, and to do it as we were driving down to a family gathering where his brother would be. Introducing the topic with Za’s story made it much easier. I did not second guess myself. I did not feel I was introducing the subject too soon. As it was he found it all very interesting and told my uncle that we had discussed important things like end of life care…. Now, I say to him, that is out of the way, let’s go back to planning for the rest of your life. He is 91 years old.”
These conversations can be very revealing, even when you think you know your loved ones:
• “I am not yet 30 and expect to have many healthy years ahead of me, but my wife and I discussed the questions on the one slide anyway. I learned so much about her during this discussion, including that she does not want me to be her advocate in an end-of-life-situation. She would like one of her siblings who has an MD to make the difficult choices because he would understand both her needs and the medical situation. I want to make these decisions well in advance of an end-of-life situation. If I don’t, I may not have the opportunity to convey my wishes to my loved ones, and they might always wonder whether or not they chose the right course.”
People are motivated to do this to ease the burden on their own families:
• “My mother decided not to receive the care that had a small chance of prolonging her life but would also have left her with irreversible consequences and a shadow of her former self. She asked me to help her have a “good death.” Our family and her doctors all came down on the right-hand side of the “One Slide” continuum, wanting her to try anything to live. She didn’t have a valid advance care directive, but luckily she was still lucid and able to sign all the papers. We all knew what she wanted, but it was still difficult to let her go. I am still thankful that I helped her, but also that I was not left in a position to make the decision for her.”
Medical providers are using it as a conversation starter:
• “I’m a physician in an ICU and I can’t tell you how many times I’ve wished families had spoken about end of life, before the actual end of life. It’s painful that many times loved ones are kept alive with no hope of returning to a meaningful quality of life, while families fight over what “mom” or “dad” would have wanted. Clinicians do the best they can (some admittedly, better than others) to ride the emotional roller coasters with families, but it’s difficult to ignore the often needless suffering of their loved ones.”
We couldn’t have said it better ourselves.