Engage With Grace

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Engage With Grace

Once again, we are joining the Engage With Grace thisThanksgiving weekend with a blog rally to encourage everyone to have end-of-life conversations with their loved ones. People are invited to share this post written by the Engage with Grace team (or some version of it that speaks to you) with your friends, family and community. Happy Thanksgiving.

One of our favorite things we ever heard Steve Jobs say is… ‘If you live each day as if it was your last, someday you’ll most certainly be right.’

We love it for three reasons:

1)      It reminds all of us that living with intention is one of the most important things we can do.

2)      It reminds all of us that one day will be our last.

3)      It’s a great example of how Steve Jobs just made most things (even things about death – even things he was quoting) sound better.

Most of us do pretty well with the living with intention part – but the dying thing? Not so much.

And maybe that doesn’t bother us so much as individuals because heck, we’re not going to die anyway!! That’s one of those things that happens to other people….

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6 Months!

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6 Months!

NHDD 6months.001.png

You may have noticed we've been a little quiet lately on the blog. We're gathering some fresh resources for NHDD 2013, if you have ideas for the blog this year, please don't hesitate to be in touch with us!

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Fulfilling

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Fulfilling

Can discussing advance directives with family actually be fulfilling? Brad Stuart M.D., Chief Medical Officer for Sutter Care at Home may be speaking from the heart about the importance of goals of care discussions, but as a leader of the Advanced Illness Management program, there is some pretty incredible research showing the benefits of advance care planning for healthcare truly delivered around the wishes of each individual patient...

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Simple Amplification

 

We're thrilled that today is the big day! The fifth annual National Healthcare Decisions Day. Below we've included some tips about a super easy way to share NHDD and the importance of advance care planning with a simple Facebook update.

Share NHDD

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Give Family A Gift

Below is a contribution from Randi Siegel, NHDD State Liaison in Pennsylvania.

Nathan Kottkamp recently blogged here about the power of stories to motivate people to do advance care planning.  The Descendants, an award-winning film starring George Clooney, is one story that we can all use as a teaching tool.

First of all, just mentioning George Clooney may help get folks’ attention.  So, too, may the publicity around this movie (including Golden Globes for best picture, best actor Clooney, and an Oscar for best adapted screenplay).   

The film sets up Clooney as a middle-aged husband whose vital, healthy wife has just been seriously injured in a tragic boat racing accident.  She now lies in a coma on life support.  At her bedside, Clooney’s character, Matt King, pleads with his wife to awaken from her coma.  After three weeks of waiting, doctors tell the anguished King that she will never wake again.

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Honoring Decisions

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Honoring Decisions

Last winter, as I celebrated the holidays with family, I was grateful for something a bit unusual... a family that is familiar with my wishes regarding end-of-life care. 

I recently completed the Five Wishes document, which gives us each an opportunity to think about and write down what we want if we are in a position where we face a life-limiting illness or injury and cannot speak for ourselves. The other important factor is to then take it a step further and talk about what we want with our loved ones.

I'm teaching a course about end-of-life care, and insisted that all of the faculty complete the forms before we asked others to do it.

Insiting people satrted with themselves meant I had to finally bite the bullet and think about this myself...

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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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