Showing posts with label end of life care. Show all posts
Showing posts with label end of life care. Show all posts

Thursday, November 24, 2011

Thanksgiving 2011: Occupy The Dinner Table and Engage With Grace

The Engage with Grace Project is an effort to raise awareness of the importance of end of life care planning and discussing your wishes with your family and friends.

Dr. Bryan Vartabedian captures the simplicity of the project in his post, "It began with a simple idea: Create a tool to get people talking. Their tool is a slide with five questions designed to initiate dialog about our end-of-life preferences."  Take time during the Thanksgiving weekend to "occupy the dinner table" with your family and friends. Discuss the 5 questions below and share your thoughts and feelings.
 
This is my 4th year participating in the Engage With Grace Project. What prompted me to start participating? It was having the opportunity to watch Alexander Drane tell Za's story at the 2008 Health 2.0 Conference. Her story personally connected as I shared in my 2008 blog post.

West Virginia is often negatively portrayed nationally at the bottom or top in national health rankings. However, it is great to see West Virginia leading the way on end of life care planning. 49% of West Virginians have filled out at least one advance directive -- the highest among all states reporting these statistics. However, this statistic shows how few of us actually take the time and effort to document our wishes. More than 1/2 of the population have left these difficult decisions to be made by their family and health care providers. This statistic shows the importance of the Engage With Grace message.

For West Virginia readers who want to learn more about end of life care check out the resources provided by the West Virginia Center for End of Life Care. There is valuable information for health care professionals to "Why and how to have end-of-life discussions with your patients", "Accessing Decision Making Capacity", and POST (Physicians Order for Scope of Treatment) Forms.  The website also provides FAQs, educational videos, and forms, including the standard West Virginia Advanced Directive Forms.

West Virginia is also creating the e-Directive Registry in conjunction with the West Virginia Health Information Network (WVHIN), West Virginia's health information exchange (HIE). The e-registry will store advance directive forms, Physicians Orders for Scope of Treatment forms, and do not resuscitate cards. The registry will allow treating health care providers to access the stored information 24/7 from around the state through the WVHIN. Most importantly, the registry will be accessible by you and I as health care consumers to verify the accuracy of our wishes. 

Following is the 2011 blog post by the Engage With Grace Team -- Occupy With Grace. Help spread the word this Thanksgiving weekend by telling your end of life care story and posting the message below. You can get the HTML to post here.
 
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.
occupy_with_grace_logo
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 at the Engage with Grace site), 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.

theoneslide

We all know the power of a group that decides to assemble. In fact, we recently spent an amazing couple days with the members of the Coalition to Transform Advanced Care, or C-TAC, working together to channel so much of the extraordinary work that organizations are already doing to improve the quality of care for our country's sickest and most vulnerable.

Noted journalist Eleanor Clift gave an amazing talk, finding a way to weave humor and joy into her telling of the story she shared in this Health Affairs article. She elegantly sums up (as only she can) the reason that we have this blog rally every year:
For too many physicians, that conversation is hard to have, and families, too, are reluctant to initiate a discussion about what Mom or Dad might want until they're in a crisis, which isn't the best time to make these kinds of decisions. Ideally, that conversation should begin at the kitchen table with family members, rather than in a doctor's office.
It's a conversation you need to have wherever and whenever you can, and the more people you can rope into it, the better! Make this conversation a part of your Thanksgiving weekend, there will be a right moment, you just might not realize how right it was until you begin the conversation.
This is a time to be inspired, informed - to tackle our challenges in real, substantive, and scalable ways. Participating in this blog rally is just one small, yet huge, way that we can each keep that fire burning in our bellies, long after the turkey dinner is gone.
Wishing you and yours a happy and healthy holiday season. Let's Engage with Grace together.

To learn more please go to www.engagewithgrace.org.This post was developed by Alexandra Drane and the Engage With Grace team.

Thursday, November 25, 2010

Thanksgiving 2010: Will You Engage With Grace?

Will You Engage with Grace this Thanksgiving weekend? I hope so.

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. 

Thanks to Alexandra Drane, Paul Levy, and many other health care bloggers and professionals for continuing to inspire and share the Engage with Grace message. Learn more about Engage with Grace and the One Slide Project at http://www.engagewithgrace.org.


Some other resources you may want to read and explore:
  •  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.


Tuesday, November 24, 2009

2009 Engage With Grace Thanksgiving Weekend Blog Rally

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

Following is the 2009 Engage With Grace Thanksgiving Weekend Blog Rally blog post:

Some Conversations Are Easier Than Others

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:

ewg satire 2

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.

ewg five questions

(To learn more please go to www.engagewithgrace.org. This post was written by Alexandra Drane and the Engage With Grace team. )

Wednesday, November 26, 2008

Engage With Grace

Last month I had the opportunity to watch Alexandra Drane announce Engage With Grace: The One Slide Project at the Health 2.0 Conference in San Francisco. The idea behind the project is to get people to share just ONE slide that helps them and their loved ones talk about having a purposeful end-of-life experience.


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.

For West Virginia readers who want to learn more about end of life care I recommend checking out the resources provided by the West Virginia Center for End of Life Care. There is also valuable information for health care professionals. Here individuals can find forms for the standard West Virginia Living Will and Medical Power of Attorney. The site also includes information, FAQs, list of West Virginia palliative/hospice providers and other resources.


Engage with Grace from Health 2.0 on Vimeo.

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.

Wednesday, April 16, 2008

National Healthcare Decisions Day (April 16)

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.

Second, for more information on West Virginia advanced directives go to the WV State Bar's resource page and the West Virginia Center for End of Life Care which includes a variety of downloadable forms and information.

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.

Monday, April 07, 2008

Dartmouth Atlas Health Care Stats on End of Life Care Costs


The WSJ Health Blog posts (WSJ article, More Choices Drive Cost of Health Care) interesting statistics on end of life care costs according to the latest Dartmouth Atlas of Health Care edition (due out today).

The report shows:
. . . 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.