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. But when it comes to how we want to be treated at the end our lives, often we don't express our intent or tell our loved ones about it.

This has real consequences. 73% of Americans would prefer to die at home, but up to 50% die in a hospital. 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. But our end of life experiences are about a lot more than statistics. They are about all of us. So the first thing we need to do is start talking.

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 are asking people to share this One Slide -- wherever and whenever they can -- at a presentation, at dinner, at their book club. Just One Slide, just five questions.

Lets start a global discussion that, until now, most of us haven't had.

Here is what we are asking you: Download The One Slide and share it at any opportunity --with colleagues, family, friends. 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 effect...and the incredibly positive impact we could have collectively. 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. (To learn more please go to http://www.engagewithgrace.org/)

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As a side note, the origins of this movement are chronicled in a very interesting article in today's Boston Globe. Check it out.

Fox Guarding the Chicken Coop? In the Bag?

There was a story in last Friday’s Globe about Jason Fox, a young child who died at Children’s Hospital, and the investigation surrounding his death. Just looking at the picture of this beautiful baby boy, one can’t help but feel enormous sympathy for his grieving family. The loss of a child is an unimaginable tragedy.

There are serious allegations of withheld medical records, substandard care, and so on. We won't comment on the facts of the case as there is a great deal of investigation going on by a number of parties, and it is unclear from the article exactly what happened. What is clear, however, is that a family has been devastated. We know, too, that the clinicians (the doctors, nurses, and everyone else involved in Jason's care) must also be significantly affected by Jason's death.

Sometimes events like these can have a polarizing effect, and they serve to trigger strong emotions on all sides. This is especially evidenced in the online reader comments to the story. Unfortunately, we can still see an “us against them” mentality. At MITSS, we recognize that adverse events have significant consequences for ALL involved, and we advocate for patients/families, clinicians, and healthcare institutions to work together to find common ground and work toward effective solutions. After all, we are all human, and we all have a stake in safe, quality healthcare.

One reader comment stuck out for us especially, and we felt it important to comment. Sconiico writes…

Classic example of the fox guarding the chicken coop…

- heck, the lay group formed to help such victims (Medically induced trauma support services aka MITSS) has its office rent paid by Brigham & Womens Hospital. Everyone is in the bag!...

In the interests of complete transparency, we’d like to offer the following response:

As a small non-profit, MITSS relies on the generous donations (financial and in-kind) of organizations and individuals from both in and out of healthcare. Brigham and Women's Hospital has generously provided us with an in-kind donation of office space. They, like our other donors, support our mission and share our vision. However, we remain an autonomous organization governed by our own independent Board of Directors. We would invite anyone to contact us at (617) 232-0090 or visit our website at http://www.mitss.org/ and would welcome the opportunity to clear up any other misconceptions.

Appropriately, the theme of our annual event last week was Together, Moving Forward!, and that is our sincerest hope for the upcoming year.

Not Able to Attend Our 7th Annual Dinner and Fundraiser -- Not to Worry!

Our last blog post referred to how busy we've been getting ready for our Annual Dinner. I am happy to report that this year we are doing something different. We will be videotaping the keynote speakers for the purpose of streaming the video from our website. We hope that those who aren’t able to make our dinner will be able to enjoy the important highlights.

Our keynote speakers are both extremely dynamic change agents in Healthcare. Margaret Murphy from Ireland is a member of the WHO, World Alliance for Patient Safety, Patients for Patient Safety Steering Group. Margaret sees patients and families as a seriously under-used resource. Following the death of her son as a result of medical error, she became actively involved, sharing her family’s experience and engaging positively with healthcare systems and professionals. Her story is one of pain, needless suffering and death, and HOPE!

Paul F. Levy was appointed President and Chief Executive Officer of the Beth Israel Deaconess Medical Center in Boston in January 2002. He is the author of numerous articles in a variety of fields and co-author of Negotiating Environmental Agreements (Island Press, 1999). He is author of a blog entitled “Running a Hospital,” and in that regard is one of the very few hospital CEOs to share thoughts publicly about hospitals, medicine, and health care issues.

We will let you know as soon as we have these videos up and running from our site. As always, we will welcome your comments once you’ve had a chance to view.

Linda Kenney
MITSS
Executive Director