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Understanding End-of-Life Care Key to Making Shared Decisions with Your Family »

Talking About Death Won’t Kill You

October 17, 2012 by Emmi Solutions

Featured Guest Blogger: Alexandra Drane

Alexandra Drane

Alexandra Drane

Here’s a sobering statistic: 70% of people want to die at home, yet only 30% do. Here’s another stat you might not have thought about recently – you only die once, as Atul Gawande points out in his essay “Letting Go”.

End of life in the US has somehow failed to become personal. It’s like this thing we put on a shelf and ignore. And getting what you want at end of life has become synonymous with filling out forms and getting waivers and going to some lawyer’s office where you pay a lot of money and get excited when you get to keep the pen.

Talking about sex won’t make you pregnant, and talking about death won’t kill you. It’s time to think about how we can make these conversations more approachable and more frequent as our lives and realities change. Simply making your wishes known is itself a form of health literacy – helping your doctors and your loved ones understand your preferences and be able to advocate those wishes should you be unable to speak for yourself.

Even politicians are warming to the idea and moving away from the “death panel” language that was introduced back in 2009. If you haven’t read it yet, be sure to check out former senator Bill Frist’s article in the The Week, in which he calls for “a national, high-profile, civil dialogue, which should begin in the living rooms of patients and their families and extend to nurses’ and doctors’ offices, hospitals, religious institutions, and policy chambers” that asks the question: How do I want to die?

"Talking about sex won't make you pregnant, and talking about death won't kill you."

It’s a tough conversation to have, but once it’s started, we’ve found that almost everyone has a story about an end-of-life experience that might have been different if only we knew more. You can see the story that launched Engage With Grace here: http://www.engagewithgrace.org/About.aspx#video

So we came up with this idea… a way to help get the conversation about end of life started – a way to Engage in this topic with Grace. Just five simple questions that we could all commit to being able to answer – for ourselves, for our loved ones. The thought was that if we could answer the questions for ourselves, and for our loved ones, we could then focus on making sure the intent they represented was honored – no matter what.

The questions are deceptively simple. Yet the offer lots of room for private introspection, for discussion around the family dinner table, and for revisiting from time to time to see how our answers might’ve changed since the last time you thought about them.

Here they are:

theoneslide

Of course there are no wrong answers – It’s only wrong if no one knows your answers, and no one is willing to advocate for you.

Since we launched in October 2008, we’ve seen that once this conversation does get started, once we share these thoughts with each other, the lawyers, the affidavits, the system that intervenes to bowl over our intent – it stops being intimidating – we become empowered.

Reinventing the way we deal with end of life is a gift for everyone – for each and every person alive today. And it’s something we have to do. Unquestionably, 100%, we have to do this better.

So please, commit to being able to answer the five questions for yourself, for your loved ones. Commit to advocating for each other. Then commit to spreading the word – use your power for this good – take this on as a mission. Just one slide – just five questions – just two minutes to spread the word. So we can all end our lives in the same way we lived them – with intent.

About the Author:

Alexandra Drane is the Founder, Chief Visionary Officer, and Chair of the Board of Eliza Corporation.  She’s devoted her career to inspiring people to lead healthier, happier and more engaged lives through the use of innovative technology. She’s also a co-founder of Engage with Grace , a not-for-profit movement launched in October 2008 aimed at helping people understand, communicate and have honored their end-of-life wishes. Based on her experience engaging people in conversation about health topics, in 2010 she co-founded a non-profit, web-based movement called SeduceHealth that aims to reframe how the healthcare industry communicates with the people it serves by adding greater passion, joy, and inspiration.

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Posted in empathy, End-Of-Life, Events, Health Literacy, informed consent, Patient Communication, Patient Education, patient engagement, patient experience, Patient Safety, Patient-Centered Care, Research, Shared Decision-Making | Tagged Atul Gawande, Care Management, Communication, Conditions and Diseases, Education, Health care, Health literacy, informed patient, Patient Education, patient engagement, Patient Experience, Patient Safety, Shared Decision-Making | 3 Comments

3 Responses

  1. on October 17, 2012 at 8:29 am lkafle

    Reblogged this on lava kafle kathmandu nepal.


  2. on October 31, 2012 at 8:01 am The 2012 Health Literacy & Shared Decision Making Series: A Recap « Engaging The Patient

    [...] Alexandra Drane spoke from experience about how discussing death is something we as a culture avoid. We keep ourselves and our families in the dark. She proposed five questions to get the conversation going. [...]


  3. on November 1, 2012 at 8:44 pm The 2012 Health Literacy & Shared Decision Making Series: A Recap | Knowledge of Medicine

    [...] Alexandra Drane spoke from experience about how discussing death is something we as a culture avoid. We keep ourselves and our families in the dark. She proposed five questions to get the conversation going. [...]



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    Both news and opinion, Engaging the Patient is brought to you by Emmi Solutions and is designed to connect healthcare leaders with peers who are making patient engagement a reality.

    This is a place where high profile healthcare experts write about their work and their goals. Our topics might vary from day to day but our focus remains constant. We believe patients are the biggest untapped resource in healthcare and we are searching for ideas and stories of new, innovative ways to make patient engagement a reality every day.

    If you have questions or would like to be one our featured guest bloggers, drop us a line.

    Some comments or opinions expressed on the blog may not reflect those of Emmi Solutions, LLC

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