Today (April 16, 2008) is “National Healthcare Decisions Day”, a collaborative effort of national, state and community organizations committed to ensuring that all adults with decision-making capacity in the United States have the information and opportunity to properly communicate and document their healthcare decisions.
My law partner, Sam Fox, who serves on the West Virginia State Bar's Law & Medicine Committee sent out an email a few weeks ago asking lawyers in West Virginia to participate in promoting this important initiative. To do my part I thought I would blog some information.
Frist, check out the resources page on the NHDD website for more information on advanced directives and advanced care planning.
Third, today there are a number of businesses and organizations around the state who will be offering assistance in completing advanced directives. Check here for a complete list of locations.
As always I would also recommend that you consult your attorney in the process.
. . . that the cost of individual medical services isn’t the big driver of Medicare spending, at least for chronically ill patients in their last two years. It’s the intensity of care, such as the number of specialist visits and days in the ICU. . .
According to the map graphic West Virginia comes in low in the "below $37,500" category showing the average Medicare Spending during the last two years of life for chronically ill patients.
As the costs of our health care system increase over the coming years we will likely see an increased focus on looking at the end of life care issue vs. costs of health care in those remaining years. These bring to the front a variety of medical, ethical and legal questions.
Alexandra's talk personally touched me because my family went through a similar experience 30 years ago when I was 12 years old. My mother died at home with cancer in 1978. She had the opportunity to die at home surrounded by her 5 children because both my dad and uncle were her doctors. In the past and today, not all families are given this important choice. The memories I have of my mother's final days 30 years ago are still important to me today.
Last week, Matthew Holt who blogs at The Health Care Blog and Paul Levy, CEO of Beth Israel Deaconess Medical Center in Boston who blogs at Running A Hospital, spread the word to bloggers about a viral campaign (call it a blog rally) to raise awareness by encouraging families to discuss end of life care issues while gathering for the Thanksgiving holiday weekend.
Below is a message being posted today and throughout the Thanksgiving holiday weekend at blogs around the country and the world:
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 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’re 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’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, 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 www.engagewithgrace.org. This post was written by Alexandra Drane and the Engage With Grace team)
UPDATE: Paul Levy provides a post-rally update thanking those engaging gracefully. There were well over 95 bloggers over the Thanksgiving holiday weekend helping to spread the word.
For the third year running I am participating in the Thanksgiving holiday Engage with Grace Blog Rally. A viral effort to communicate the importance of having a conversation with your family and loved ones around end of life care wishes. Would you prefer to die in a hospital, or at home? Can your family correctly describe how you would want to be treated in the case of a terminal illness or sudden traumatic accident? Does your family know where you keep your living will and advanced directive?
At the heart of Engage With Grace are five questions designed to get the conversation about end-of-life started.They’re not easy questions, but they are important.The key is having the conversation before it’s too late. Throughout the year I continue to promote the Engage with Grace effort (and so can you) by using the One Slide (see the slide below) at the end of my power point presentations.
So in the spirit of the upcoming Thanksgiving weekend, take time after your dinner, turn off the TV, and take time with your family and friends to engage in the Engage with Grace conversation.
CNN article, At Thanksgiving, the hardest conversation which features a video interview with Alexandra Drane and good advice from Jeffrey Asher, an elder-care attorney with Eaton & Van Winkle LLP in New York on how to get the end of life care conversation started.
My 2008 Engage with Grace Blog post where I shared how Alexandra Drane's talk at the 2008 Health 2.0 Conference personally touched me because of my experience as a young 12 year old boy who lost his mother to cancer who was allowed to die at home surrounded by her husband and family.
Last year Paul Levy, Matthew Holt and Alexandra Drane asked me to participate in the Engage With Grace Thanksgiving Blog Rally. My post last year describes the Engage with Grace project and tells my personal story of why end of life care is important for all of us to discuss with our family and loved ones.
Along with my friends and health blogging colleagues, Paul, Matthew, Alexandra, Adam Bosworth, Christian Sinclair, Drew Rosielle, e-Patient Dave deBronkart, Jessica Lipnack, Ted Eytan and many others - we ask that you to take time to talk to your loved ones over this holiday weekend about these important end of life questions and carry out your wishes by executing a living will and medical power of attorney.
How else can you participate in the Engage With Grace Thanksgiving Blog Rally?
If you are a blogger, spread the word about the project by adding your own post about Engage With Grace. You can use the text below (download a ready-made html version here) or tell your own story of the importance of communicating your end of life wishes. We suggest you post it starting on Tuesday, November 24 and leave it up over the entire holiday weekend.
Second, you can donate your Facebook and/or Twitter status to the rally. Post a link to your post and post a status update. You can create your own status update or use the following universal update (use the following hashtag #EWG so that we can track the rally:
Pssssst - Engage with Grace at www.engagewithgrace. Join the Blog Rally. Pass it on. #EWG
Last Thanksgiving weekend, many of us bloggers participated in the first documented “blog rally” to promote Engage With Grace – a movement aimed at having all of us understand and communicate our end-of-life wishes.
It was a great success, with over 100 bloggers in the healthcare space and beyond participating and spreading the word. Plus, it was timed to coincide with a weekend when most of us are with the very people with whom we should be having these tough conversations – our closest friends and family.
Our original mission – to get more and more people talking about their end of life wishes – hasn’t changed. But it’s been quite a year – so we thought this holiday, we’d try something different.
A bit of levity.
At the heart of Engage With Grace are five questions designed to get the conversation started. We’ve included them at the end of this post. They’re not easy questions, but they are important.
To help ease us into these tough questions, and in the spirit of the season, we thought we’d start with five parallel questions that ARE pretty easy to answer:
Silly? Maybe. But it underscores how having a template like this – just five questions in plain, simple language – can deflate some of the complexity, formality and even misnomers that have sometimes surrounded the end-of-life discussion.
So with that, we’ve included the five questions from Engage With Grace below. Think about them, document them, share them.
Over the past year there’s been a lot of discussion around end of life. And we’ve been fortunate to hear a lot of the more uplifting stories, as folks have used these five questions to initiate the conversation.
One man shared how surprised he was to learn that his wife’s preferences were not what he expected. Befitting this holiday, The One Slide now stands sentry on their fridge.
Wishing you and yours a holiday that’s fulfilling in all the right ways.
(To learn more please go to www.engagewithgrace.org. This post was written by Alexandra Drane and the Engage With Grace team. )
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