2012 NHDD Blog Rally

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2012 NHDD Blog Rally

You're invited!

Are you still not sure what you're going to do for National Healthcare Decisions Day? As an individual, there's something for everyone, whether you complete your own advance directive, update your advance directive, make sure your family knows what's on your advance directive, start advance care planning conversations with family or friends and now you can donate a spot on your blog. Something as simple as a tweet and facebook post can help raise awareness so hopefully you'll consider participating in the blog rally. Last April we hosted the first NHDD Blog Rally, inspired by the Engage With Grace initiative every Thanksgiving.  We are just one week away from National Healthcare Decisions Day and are hosting a second annual Blog Rally for NHDD. All are welcome to participate to help raise awareness about the importance of advance care planning. 

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One Month Until NHDD!

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One Month Until NHDD!

As the Fifth Annual National Healthcare Decisions Day approaches, I cannot help but think about how far we’ve come and what we’ve accomplished.  NHDD was founded out of the passion of a small group of dedicated people and organizations who recognized that we need to do better as a nation with respect to advance care planning.  The efforts have produced a grassroots initiative that has now touched the lives of millions.  And, we’ve done it with very little money and without a single full-time staffer.

The growth and impact numbers of NHDD are and should be a great source of pride, but the reality is that we’ve only just begun. 

A recent study in California found that approximately 80% of people said they believed that advance healthcare planning was important, yet less than 25% had actually engaged in it. At a minimum, those figures ought to be flipped.  Sadly, for untold numbers of those without their advance care planning in place, their families are going to be thrust into situations in which they will intimately understand the reality of why advance care planning is so important, which is that the absence of advance care planning all-to-often leads to pain, confusion, frustration, additional time and expense, worry, bickering, and myriad other horribles. 

It is my sincere hope that every adult in the US (and Canada, too, since they’ve joined our efforts with National Advance Care Planning Day), will have some exposure to NHDD and will then make it real in their own lives. 

Too many of us procrastinate on advance care planning discussions because the timing now just doesn’t feel right or because it’s a hard topic to broach. 

NHDD exists to eliminate the excuse.  With just one month until the fifth annual NHDD, just mark you calendar, gather your loved ones, watch the Speak Up video and have the talk.  And, when you’re done, be sure to document the discussion using one of free advance care planning forms.  When you do, the reality will sink in: a burden is lifted and you’re prepared.  It’s an awesome feeling.

Thanks to all who have made and continue to make NHDD a reality.

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Live Forum

Since September 2011, National Healthcare Decisions Day has hosted a live monthly discussion to raise awareness about the importance of advance care planning on Twitter with the hashtag #NHDD. Friday, March 16th at 10am PST will be the last #NHDD TweetChat before National Healthcare Decisions Day 2012 on April 16th and we hope you’ll consider joining the conversation. To view the transcripts and analytics from #NHDD TweetChats since September, please visit the #NHDD TweetChat archive.

What is a TweetChat?

A TweetChat is a planned discussion on Twitter. There is a set time and place people gather to discuss a topic or set of issues. Usually there is a moderator that guides the discussion and plans topics for the group to chat about.

Click here to join the TweetChat.

Why participate? 

  • Every tweet helps increase the chance that someone will learn more about advance care planning
  • NHDD participants are passionate about raising awareness about the importance of advance care planning, the TweetChat is a great way to meet others who share your passion
  • For all the people in our country and around the world that have not yet taken time to document and discuss their healthcare wishes if at some point in their care, they were unable to make decisions for themselves. The taboo of discussing these wishes becomes lessened every time we talk about it (especially if we’re having conversations on a pubic platform)!

 

 

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Hearing A Call To Action

Below is a contribution from Michael J. Bernhagen, Co-Producer of Consider the Conversation: A Documentary on a Taboo Subject.

While we are thrilled about the recent award for Consider the Conversation: A Documentary on a Taboo Subject, the most important outcome of our work began unfolding one year ago, right here in Wisconsin.

In January of 2011, the Wisconsin Medical Society’s Council on Health Care Ethics asked me to address Council members in our capitol city of Madison. The Council said it had significant interest in the topic of advance care planning, but I was immediately skeptical for two reasons. First, I had repeatedly encountered a general attitude of “polite indifference” toward end-of-life issues when calling on doctors in the course of my hospice work. And, second, I privately feared the Council’s agenda revolved more around pursuing legislative mandates than establishing “best practice” patterns for discovering, documenting and honoring the wishes of chronically and terminally ill people.

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Story Time

Last week, I convened our monthly State Liaisons call.  We had a long discussion about what works best for NHDD activities.  The group agreed that stories are among the most powerful tools to spur people to engage in advance care planning.  Stories can take all sorts of shapes and sizes.  They can be happy, sad, frustrating, and rewarding.  No matter what, telling stories is likely to engage people and help them understand the benefits of advance care planning.

People repeatedly ask me how and why I founded NHDD.  Of course, I respond with my story.  My story is that I’m lucky.  I haven’t really had to deal with a complex healthcare decision-making situation in my immediate family, although we’ve been sharing our wishes for decades.  Yet, in serving on several hospital ethics committees, I’ve repeatedly seen the agony that comes as families try to make decision on behalf a loved one who never talked about his/her wishes (and, in most cases, was never asked).  I’ve been humbled, however, by countless stories from NHDD participants about how helpful NHDD has been to prevent some of those situations from happening.  Thus, stories lead to more stories.

 All of us have some story to tell about advance care planning.  Don’t be shy.  Making the topic personal makes it real.  Whether your NHDD event involves a crowd or an intimate group, please consider telling your own story (or even someone else’s).  You’ll be amazed how effective it is.  And, then, when you’ve got an NHDD success story to tell, share it with us and we can amplify it with this blog!

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Open The Door

This is a contribution by Michael J. Bernhagen, Co-Producer of “Consider the Conversation:  A Documentary on a Taboo Subject.”

In the weeks leading up to the February 5th, 2011 premiere of our documentary film, Consider the Conversation, Terry Kaldhusdal, and I were scared. We were worried that, if given the opportunity, no one would show up to watch a movie created by a hospice professional and 4th grade teacher, let alone one that examines our struggle with communication and preparation at life’s end.

After all, the country just went through the whole “death panel” debate, right?

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Dear President Obama

Please, Mr. President, Recognize National Healthcare Decisions Day.

I have written another letter to the President, requesting an official proclamation regarding National Healthcare Decisions Day.  My fingers are crossed that this year, our 5th, will finally be the one that enjoys Presidential recognition.  And why shouldn’t it? 

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"The Descendants" Sneak Peek

Note: There are some small spoiler alerts in the post below. 

Image from Fox Searchlight PicturesIt is not a subject matter you would expect Hollywood to address – the issues surrounding advance healthcare directives – but The Descendants did an excellent job of stressing the importance of pre-planning and depicting the heartache that results when a loved one can’t speak for themselves. 

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The Spirit and Power of Collaboration

Among the many great things about National Healthcare Decisions Day (“NHDD”) is that it creates a wonderful opportunity for collaboration within the community and among various organizations.  The Speak Up! video featured below and now on the NHDD home page is a wonderful example of this.  The U.S. version of the video is a slightly revised version of the Canadian video, which itself was inspired by NHDD.  

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Never Thought About That

On April 7, 2010, Terry Kaldhusdal and I were flying to New York City to meet with authors Thomas Cathcart and Daniel Klein for Consider the Conversation, our film about the American struggle with communication and preparation at life’s end.  While preparing for the interview, our discussion shifted to constructive criticism given six days earlier by an African-American physician who attended an educational conference where we screened clips from the unfinished film.  Her feedback was extremely helpful. 

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Holiday Reminders from NYTimes Health

Last week, The New Old Age, a health blog out of the New York Times, wrote about a Holiday Reality Check

Some organizations urge families to use these holiday gatherings to raise the issue of advance directives, giving parents a chance to express their preferences for future care decisions before a real crisis hits. It’s a fine idea to initiate these conversations in person, when older relatives can hear and see their children and when siblings may also be on the scene.

The idea of using the holidays to talk about advance directives and other advance care planning issues is great and supported by several organizations as

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Occupy With Grace

In honor of Thanksgiving, NHDD is celebrating the Engage With Grace (#EWG) movement by publishing a blog post by Alexandra Drane and the Engage With Grace team. Every year the Engage With Grace movement has a theme to encourage family to discuss their preferences in end of life care while they gather for the holiday. Helping families understand decisions in advance care planning is crucially important to ensuring an individual's wishes are honored. We often discuss how advance directives are important for everyone to complete, not just someone who is experiencing an illness, so we hope this will be a reminder of the opportunity to make sure the people you love know what's important to you.

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Closing The Gaps

One of the reasons that I founded National Healthcare Decisions Day (NHDD) was because of the far-too-common problem of seeing patients who had been in the hospital for several days without having their healthcare wishes documented and without having a healthcare decision-maker named.  Why and how does this happen?  I believe the answer is that there are several gaps in the healthcare system.

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No Matter How Small

When National Healthcare Decisions Day (NHDD) was still just a dream, we talked a lot about whether “it was time” and whether we were “really ready” to launch such an ambitious event.  Fortunately, the original planning group agreed not to let the perfect be the enemy of the good.  Ultimately, we took a leap of faith and just launched NHDD, not entirely knowing where it would all go.  By several measures, it has gone very well.  Sure, we’ve got room to improve, but we’ve built a very solid foundation.  One example of the impact of our efforts can be seen in the numbers below. 


 

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#NHDD

With eight months until the fifth annual National Healthcare Decisions Day on April 16th, 2012, NHDD is announcing the launch of a new TweetChat dedicated to connecting advance care planning advocates across the country. For the past two years NHDD advocates have used the hashtag #HaveTheTalk to encourage advance directive discussions. This year we will be using #NHDD as the official hashtag to share advance directive resources instead of #HaveTheTalk mostly because we want to avoid any confusion with the other kinds of "talks" happening for public health.

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New Book Celebrates Patient Empowerment

A huge part of motivating every day people like you, me and most National Healthcare Decisions Day (NHDD) advocates across the country to make informed medical decisions is helping us feel empowered to do so. On this blog and through the NHDD presence on Facebook and Twitter, we try to do just that by sharing advocate stories, quality advance care planning information and resources. Well, I recently ran across a new book by long-time health care consultant and the blogger behind Patient Safety Blog, President and CEO of PatientAdvoCare Ken Farbstein.

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Success! A Look Back at NHDD 2011

It's been exactly one month and two days since National Healthcare Decisions Day 2011!

I wanted to take some time out to say thank you for all you did to make NHDD 2011 bigger and better than ever. Our participation numbers took a nice step up, but it was our activity level that saw a huge jump.

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Silly Social Media

Did you know that at this very second you're participating in social media? Yes, right now! Do you feel silly? Your answer could be 'yes' but more than likely, it's probably 'no' because you read blogs all of the time and turn to them as a trusted source of information, right?

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Plan for No Regrets...

Some of us have the best of intentions when it comes to our plans to complete our advance directives or start the advance care planning process with our families. But, our intentions to plan for the medical unknown are often waylaid by our fears or what we perceive to be our loved ones' fears of discussing such things.

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