Losing My Mother Inspired Me to Help Others — Like You

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Losing My Mother Inspired Me to Help Others — Like You

An avalanche of grief, combined with mountains of difficult decisions to make and details to attend to, was triggered the moment I received a phone call from my brother saying “Mom’s dead” one sunny May morning in 2006.

My seven year career spent as an estates and trust paralegal helping widows search for information after the death of a loved one, together with the experience of my mother’s sudden death gave me the gift of being prepared and inspired me to create The LastingMatters Organizer, my contribution to others like me.

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Blame NHDD

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Blame NHDD

For many people, it is very hard to start an advance care planning discussion.  One of the key problems is finding the “right time” and the “right way” to bring up the topic.  All too often, this becomes a perpetual stumbling block because it often feels like the “right time” and the “right way” don’t exist.

A solution to this situation is to “blame” NHDD for the timing and the way to start the conversation.  Let NHDD be the scapegoat.

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Let's Get to Work

We’ve got a lot of work to do.  That is one of the simple messages found in the Institute of Medicine’s recent report “Dying in America.”

To be sure the IOM identified several flaws in the way that we address end-of-life care in America.  Many of these issues are well outside the scope of what National Healthcare Decisions Day (NHDD) can address, but the IOM did strongly urge the on-going and enhanced used of advance care planning as a key strategy to improving end-of-life care. 

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April & May 2014 News Roundup

The countdown is over! National Healthcare Decisions Day has come and gone. Yet, news of advance care planning, the NHDD movement and “having the conversation,” just keeps rolling off the presses!  Over the last two months, there has been yet another noticeable increase in press around ACP issues. Media outlets, including The New York Times, TIME, Mobihealth News and HuffPost Healthy Living, have shared everything from announcements about NHDD events to editorials about the value of ACP to articles defining and providing resources to start the process. The growing buzz about ACP over the past two months has not just been limited to our corner of the world; news of the first-ever “Conversations that Count Day” in New Zealand  and Canada’s third annual “National Advance Care Planning Day” hit the presses and airwaves repeatedly since we last reported. So, without further adieux, here’s a look at many of the interesting and thought-provoking ACP stories that have been popping up all over the globe over the past two months:

April 2014 Advance Care Planning News Roundup

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How can National Healthcare Decisions Day change our culture?

The following is a guest contribution by Nick Jehlen, Partner at The Action Mill.

We, as a culture, are scared to death of death. And we know this is a problem.

We know that there are real dangers if we avoid discussions about death. We risk pain and trauma for ourselves and our loved ones if we don’t talk about what we want at the end of our lives. But we also risk losing out on deeply meaningful interactions with the people around us.

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March 2014 News Roundup

We just one month away from NHDD 2014! As the big day draws near, the media coverage around advance care planning (ACP) and advance care directives is increasing daily. Over the past month, we’ve seen a considerable surge in interesting and relevant articles in local and national outlets including national public radio (NPR) and the Wall Street Journal (WSJ). These pieces have been raising interesting (and, in some cases controversial) discussions about everything from La Crosse, Wis.—“A Town Where Everybody Talks About Death” –to how advance care planning can cut medical costs and the fact that caregivers and potential caregivers need to plan ahead.

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February 2014 News Roundup

With just two months left until NHDD 2014, conversations about advance care planning (ACP) and end-of-life-care have been heating up all over the country (and the world) over the past month. Since our last roundup, the news cycle’s focus has covered the entire spectrum of issues associated with ACP. It has run the gamut from struggles to have living wills respected—one in Texas and one overseas— and new found support for ACP initiatives to living wills, advance directives and do not resuscitate (DNR) orders as Valentine’s Day gifts.

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January 2014 News Roundup

It’s 2014 and we’re kicking off the new year with a fresh National Healthcare Decisions Day (NHDD) news roundup of recent articles relevant to advance care planning. NHDD plans to collect and organize interesting articles each month for our community of people interested in issues related to discussing and documenting informed healthcare decisions.

Recent news cycles remind us about the importance of this NHDD community and it’s dedication to raising awareness about advance care planning (ACP). Just this week, Hillary Young, Medical Guardian’s Communications Manager published a piece on the Huffington post urging people to think about end-of-life care titled “Are You Thinking About End-of-Life Care? You Should Be.” Young’s piece is a thoughtful examination of the awareness levels of people throughout the country about the importance of advance care planning and advance care directives. Young references a “new study published in the American Journal of Preventative Medicine” and breaks down the disparities of awareness across the United States. Some of the facts she highlights are alarming, though we would argue, important to examine in building the much needed momentum for the ACP movement.

On Sunday, CNN introduced "Dying: What no one wants to talk about" by Jacque Wilson. This piece was spurred by the tragic brain death of 13-year-old Jahi McMath following a routine tonsillectomy. The news outlet explores the sometimes awkward, but necessary conversations and virtues of advanced cared planning in preventing emotional and heart wrenching decisions for families. CNN is also covering a brain death case in Texas “Family seeks to take pregnant brain-dead Texas woman off ventilator,” where Marlise Munoz’s family has had disagreements since she suffered a pulmonary embolism. These stories have sparked a difficult conversation and debate about advance directives that will likely carry-on long after the news cycle has ended.


Quick look at articles from the past month:

Matters of life and death: Making decisions now will help loved ones in future

http://www.freep.com/article/20140112/FEATURES01/301110014/Life-and-death-conversations-family


Are You Thinking About End-Of-Life Care? You Should Be.

http://www.huffingtonpost.com/hilary-young/are-you-thinking-about-end-of-life-care_b_4590795.html


Dying: What no one wants to talk about

http://www.huffingtonpost.com/hilary-young/are-you-thinking-about-end-of-life-care_b_4590795.html


A great resolution involves pre-planning

http://www.capitalgazette.com/bowie_bladenews/senior_moments/a-great-resolution-involves-pre-planning/article_d08d26c8-ee84-5ca7-bb76-5cbb111f6d30.html


No one wants to talk about death, but you need to anyway  

http://www.latimes.com/opinion/commentary/la-oe-stulberg-advance-healthcare-planning-20131230,0,5263335.story#ixzz2qXakYdqR


End of Life Planning in Japan

http://www.theepochtimes.com/n3/421693-end-of-life-planning-in-japan/


Tips on how to create a living will

http://www.baxterbulletin.com/article/20131223/NEWS01/312230027/Savvy-Senior-Tips-how-create-living-will?nclick_check=1


Talk end-of-life care to take the shock out of death

http://www.rrstar.com/article/20131221/NEWS/131229913/10472/NEWS#ixzz2qXa8GyfE


Having a say in your health care when it matters most

http://michronicleonline.com/2013/12/18/having-a-say-in-your-health-care-when-it-matters-most/


Digitize your advance directives http://thehill.com/opinion/op-ed/193444-digitize-your-own-advanced-care-plan


Aging Well: Time is now for end-of-life planning

http://www.timesonline.com/healthandwellness/aging-well-time-is-now-for-end-of-life-planning/article_cad15866-2f4e-5998-8284-8e879d3d10c4.html


Holidays a good time to have 'the talk' about end-of-life planning

http://www.delawareonline.com/article/20131217/HEALTH/312170017/Holidays-good-time-talk-about-end-life-planning?nclick_check=1


This holiday season, give the gift of planning

http://www.mysuncoast.com/health/kagan/this-holiday-season-give-the-gift-of-planning/article_9efe22c4-66a3-11e3-8fef-001a4bcf6878.html


Editorial: Medicare-funded end-of-life planning benefits everyone

http://www.spokesman.com/stories/2013/dec/17/editorial-medicare-funded-end-of-life-planning/


Lack of Awareness Continues to Be a Barrier for Americans in Making Medical Wishes Known

http://www.digitaljournal.com/pr/1642392#ixzz2qXYcH7Uy


Researchers investigate new way to improve end of life planning

http://phys.org/wire-news/148371097/researchers-investigate-new-way-to-improve-end-of-life-planning.html


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One Share At A Time

With a little more than a week until NHDD we've started to get excited about our annual day dedicated to inspire, educate and empower the public and providers about the importance of advance care planning.

For the past week we've been publishing quick facts and quotes about advance care planning on Facebook and we thought we'd post a quick reminder that using the share button on Facebook is a great way to amplify the reach of good information about advance care planning. 

Looking forward to advocating with you over the next couple of weeks!

- The NHDD Team

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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!

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

 

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

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

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!

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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