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Meet Rosaria Vandenberg

Who was it who said, “The death of a million is a statistic — the death of one is a story.”?

Engage with Grace begins with a story — a story about an extraordinary young woman named Rosaria Vandenberg who was 32 when she was diagnosed with stage IV glioblastoma. An extraordinary young woman who was 32 when she died — just 7 short months later — leaving behind a two year old daughter, a doting husband, and a loving loving family. Her experience — as well as her family's experience — is part of what inspired us to start the Engage with Grace movement.

Za almost died in the hospital having not been touched or held by her two year old daughter, Alessia, in over two months. Through the force of one person, the family stood up to the system and did what they thought she would have wanted — they took her home.

And that night — after two months in the hospital, two months of Alessia feeling afraid to hug her mum, lie next to her mum, talk to her mum, touch her mum — on the very first night she was settled at home — Alessia crawled up next to Za in the bed, and for the first time in eight weeks, gave her mum her medicine. For the first time since Za's 2^nd surgery, she crawled in to bed next to her. And Za — who had not spoken or opened her eyes in at least a week, woke up fully, and looked her daughter square in the eyes, and loved her in the way that only a mum can. And the next night she died, peacefully, at home.

Would our experience have been different if we, as a family, had discussed these difficult choices? If the family had not found the strength to take her home, would Za have ever held her daughter again?

These questions are in part what have led to the Engage with Grace movement.

About Engage with Grace

We make choices throughout our lives — where we want to live, what types of activities will fill our days, with whom we spend our time. These choices are often a balance between our desires and our means, but at the end of the day, they are decisions made with intent. Somehow when we get close to death, however, we stop making decisions. We get frozen in our tracks and can't talk about our preferences for end of life care.

Studies loom out there — 73% of Americans would prefer to die at home¹, but anywhere between 20-50% of Americans die in hospital settings.² More than 80% of Californians say their loved ones “know exactly” or have a “good idea” of what their wishes would be if they were in a persistent coma, but only 50% say they've talked to them about their preferences.³

But end of life experience is about a lot more than statistics. It's about all of us.

In the summer of 2008, Matt Holt (Founder of Health2.0) and Alexandra Drane (President of Eliza) met with some friends for dinner. Over their second cocktail, they got deep into conversation about these very topics. Many of us live with such intent — why do we put the end of our lives in someone else's control?  Why isn't this a conversation that people are having? How could we help start it?

And it hit us — What if we could work together to start a viral movement — a movement focused on improving the end of life experience?  What if we took responsibility for starting a national (even global) discussion that, until now, most of us haven't had?

Engage With Grace: The One Slide Project was designed with one simple goal: to help get the conversation about end of life experience started. The idea is simple: Create a tool to help get people talking. One Slide, with just five questions on it.  Five questions designed to help get us talking with each other, with our loved ones, about our preferences. And we're asking people to share this One Slide — wherever and whenever they can… at a presentation, at dinner, at their book club. Just One Slide with just five questions to help get us talking. Just One Slide that we as a community could collectively rally around sharing — in meetings, at a conference, or over a drink.

This is the link to the slide, and this is what we are asking you to do…

Download The One Slide — http://engagewithgrace.org/Download.aspx

Share it any time you can — at the end of presentations, at dinner, or at your book club. Think of the slide as currency and donate just two minutes whenever you can.

Commit to being able to answer these five questions about end of life experience for yourself and for your loved ones. Then commit to helping others do the same. Get this conversation started.

Let's start a viral movement driven by the change we as individuals can affect …and the incredibly positive impact we could have collectively.

Donate just two minutes to adding just this One Slide to the end of your presentations. Get others involved. Help ensure that all of us — and the people we care for — can end our lives in the same purposeful way we live them.

Just One Slide, just one goal. Think of the enormous difference we can make together.

Why It Matters

Many of us do not die in the way we would have chosen

• 73% of Americans would prefer to die at home¹, but anywhere between 20-50% of Americans die in hospital settings.²
• More than 80% of Californians say their loved ones “know exactly” or have a “good idea” of what their wishes would be if they were in a persistent coma, but only 50% say they've talked to them about their preferences.³
• Eight out of ten people say it is “very” or “somewhat” important to write down EOL wishes, but only 36% actually have written instructions.⁴

• According a NY Times article,

  Dr. John E. Wennberg of Dartmouth Medical School, the chief author of the study, said doctors and hospitals that provided more care, or more intensive care, did not necessarily achieve better results for patients. He stated, “Some chronically ill and dying Americans are receiving too much care — more than they and their families actually want or benefit from⁵

And it comes at a great cost

• A study by the California Healthcare Foundation compared patients who received palliative care services (i.e. reducing the severity of symptoms, not trying to cure the disease) versus those who did not over the last three days of life. The cost for patients who received palliative care services was $492 versus $2,671 for those who did not, creating a savings of $2,179 in the last three days of life.⁶

People don't talk about death, which means that often times, people aren't able to die in the way that they lived — with intent. Some people die in a hospital when they would have preferred to be at home. Others are kept on life sustaining treatments way beyond the point they would have wanted. This comes at a high cost to us, our families and the healthcare system. Communicate your wishes. Engage with Grace.

• ¹ http://www.publicagenda.org/citizen/issueguides/right-to-die/publicview/people-concerns
• ² http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=1282180
• ³ California Healthcare Foundation, “Attitudes Toward End-of-Life Care in California,” 3. (Lake Research Partners, November 2006).
• ⁴ Ibid.
• ⁵ http://www.nytimes.com/2008/04/07/health/policy/07care.html
• ⁶ “When Compassion is the Cure: The Case for Hospital-Based Palliative Care.” California Healthcare Foundation, 2008, p 31.

Outside Resources

“Thank You” to Our Supporters

For letting us tell this story:

• John Vandenberg
• Alessia Vandenberg
• Antonio Bertone

The Eliza Team - for their time, passion and resources, particularly:

• Alex
• Arden
• Gene
• Leigh
• Lucas
• Sarah

Health 2.0 - for their investment in the idea and willingness to provide a forum for us to launch it:

• Matthew

And thanks to others who supported us along the way:

• Charlie Baker
• Evelyn Goodfriend
• Gordon Norman
• Molly Joel Coye, MD MPH
• Paul Wallace
• Sarah Park
• Healthwise
• Paul Levy - for being the mastermind behind our “blog rally” and an all around supporter
• Carol Lin