Massachusetts General Hospital Patient Care Services Ethics in Clinical Practice Committee Annual Advance Care Planning Information Booth

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Massachusetts General Hospital Patient Care Services Ethics in Clinical Practice Committee Annual Advance Care Planning Information Booth

On April 11th 2017, the Patient Care Services Ethics in Clinical Practice Committee hosted its Annual Advance Care Planning Information Booth in the Main MGH Corridor for patients, visitors and staff. The Ethics in Clinical Practice Committee (EICPC) is one of several Collaborative Governance Committees within Patient Care Services (PCS). The Collaborative Governance model empowers employees in direct care, formal leadership, educational, research, and quality improvement roles to positively impact quality patient care outcomes across the organization through a wide variety of activities and venues.

EICPC is a multidisciplinary committee that (1) supports and educates patients, families, the public, and MGH clinicians and other staff regarding ethical issues, (2) provides a forum for front-line clinicians throughout PCS to raise and discuss ethical questions and concerns, (3) develops and disseminates ethical resources available at MGH, and (4) provides opportunities for the professional development for EICPC “champions” (members) through their participation in Collaborative Governance. The work of this committee involves identifying strategies to integrate ethical judgment into professional practice and consultation at unit and organizational levels related to ethical issues in daily practice.

Promoting the advance care planning process across the MGH community has been at the core of EICPC’s work particularly over the past 15-20 years. Successful advance care planning often starts with a conversation.  The Advance Care Planning Information Booth gives patients, families, visitors, and staff the opportunity to have a conversation with caring and knowledgeable individuals.  A planning committee comprised of several EICPC champions supported by EICPC leadership coordinate and facilitate the booth each year. A sign-in sheet is circulated among EICPC membership to volunteer their time to assist in staffing the booth. EICPC leadership assure that there is a blend of experienced and novice EICPC champions that volunteer to support everyone involved and promote their involvement as a positive professional development experience.  Marketing strategies have focused on advertising this event through a variety of MGH publications, all user email broadcasts, and in collaboration with other EICPC colleagues at unit, departmental, and service levels.  

The planning committee also obtains proclamations from both the Governor of Massachusetts and Mayor of Boston each year that recognize the importance of National Healthcare Decisions Day and further emphasize Massachusetts’ commitment to advance care planning as an important and necessary aspect of patient care. Other EICPC champions are invited to join the planning committee in staffing the booth to provide on-site consultation regarding the completion of an advance directive, important considerations in identifying and selection a health care agent, and distributing a variety of resources that include copies of the Massachusetts Health Care Proxy and Medical Orders for Life Sustaining Treatment (MOLST) forms, copies of the MGH patient education handout, Planning in Advance for Your Health Care, information on organ donation, and a list of advance care planning web-based resources.  Sample copies of the Massachusetts Health Care Proxy form in Spanish and Five Wishes forms for adults, children, and adolescents are also made available for patients, families, visitors, and staff.

In 2017, approximately 136 individuals received on-site consultation and education related to advance care planning, many of whom completed a Massachusetts Health Care Proxy form on site! Activity at our 2017 booth was quite robust and we are energized and excited about this year! The Annual Advance Care Planning Booth is scheduled for Wednesday, April 25th. In addition to some of the previously mentioned materials, we hope to incorporate a continuous showing of the NHDD video, Imagine, in our display. EICPC is grateful to have strong PCS leadership and institutional support to promote the advance care planning process in several ways but the Annual Advance Care Planning booth is a major focus and highlight among our yearly activities.

 

Submitted by: Cynthia Ann LaSala, MS, RN. Nursing Practice Specialist, General Medicine and Advisor, PCS Ethics in Clinical Practice Committee. 

Massachusetts General Hospital - 50 Fruit Street, Boston, MA. 02114

clasala@partners.org

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Having the Conversation - Once is Not Enough

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Having the Conversation - Once is Not Enough

I loosened my embrace and pulled back to look at Bruce. “If anything happens,” I said, “I don’t want to be kept alive as a vegetable.” I knew logically that these were my wishes, but I finally had the need, and the courage, to voice them in a way that left no doubt.

We’d already had this conversation. More than one in fact, but those had been hypothetical. On Christmas Day in 2000, it was suddenly real. Two days earlier we’d huddled together as the surgeon detailed the risks involved in cutting a jumbo-egg-sized tumor from the interior of my heart. When I agreed to the surgery I also made clear my end-of-life wishes should something go wrong. 
“You’re going to be fine,” Bruce said.
“I hope so, sweet love. But I need to know that you’ll be able to make the tough decisions if it comes to that.”
 “I will. I would feel exactly the same if it was me,” Bruce assured me. This clearly was not easy for him to say, but even so, I knew I could count on him.

Eight years later our roles were reversed when the most powerful chemotherapy available had weakened Bruce’s body but failed to vanquish the Stage IV cancer that ravaged his esophagus and liver. Bruce decided to stop treatment. He chose quality of life over quantity. 
When Bruce called our children and siblings to tell them of his decision, we both felt relief that they didn’t try to persuade him to try more treatment. Frank discussions, as well as sharing our living wills and healthcare directives, had set the stage for this difficult conversation.

We met with his oncologist to make it official. Sitting side by side, my hand resting on his thigh and his hand atop mine, tears in our eyes, Bruce told her, “I’m done. I don’t want to die with chemo in my veins or a tube in my stomach.” He would not spend his last days tethered to an IV for treatments that would sap his body and addle his brain. Instead, he chose to live his life as fully as possible. 
“I understand.” She wasn’t surprised. 
“I want to die at home,” Bruce emphatically told her.
“I don’t see any reason why you can’t. Hospice can come to you on an outpatient basis.” 
“You said last time that I’d probably have three to six months. Do you think it will be closer to three or six?” Bruce was already pivoting to planning the rest of his life.
“It’s impossible to tell,” she replied, not comfortable going beyond citing a range.
Bruce didn’t let her off the hook. “If I made you guess, what would you say?”
“I’d say it would be closer to three months.”
 As it turned out she was right on the money: Bruce would live another two months and twelve days. 

Bruce’s decision to stop treatment was not as hard as one might expect. We had been talking about it in the abstract for months, even years. We had living wills and health care directives. We had reaffirmed them when I’d had open-heart surgery, again when Bruce was diagnosed. Now, when the abstract became real, we did not agonize over whether it was still what we wanted. Our end-of-life wishes had been formed over a lifetime of watching people die, and just as importantly, watching people live. 

It was strangely calming to have a more certain future and to be in position to better plan. The path became so clear, the priorities lit in neon. How Bruce wanted to live and to die was his choice, and my role was to make it happen. Our family had a single goal that everyone could devote themselves to—Bruce living the rest of his life as fully as possible. Little did we know that by focusing on easing his transition we would also be easing ours.

The many conversations we’d had over the years ensured his end-of-life experience was exactly what he wanted, albeit sooner than we wanted or expected. Doctors worked as a team to fulfill Bruce’s wishes, fully supportive of his decision. Appreciative family and friends took advantage of the opportunity to say good-bye. These last months were some of the most celebratory, peaceful, and intimate we had shared during our forty-six years together.
 

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Author: Susan Ducharme Hoben

Susan Ducharme Hoben is the author of Dying Well: Our Journey of Love and Loss,  a memoir about an uplifting end-of-life journey that offers a thought-provoking perspective on dying.

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Have You Had the Conversation? We’re Here to Help

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Have You Had the Conversation? We’re Here to Help

National Healthcare Decisions Day exists to inspire, educate, and empower the public and providers about the importance of advance care planning.

During the week of April 16 – April 22, we hope that you will join us in advocating for better public understanding of advance care planning.

It starts with you and your loved ones.

Have you had the Conversation?

We talked to people in Faneuil Hall (Boston, MA) to understand their views on advance care planning. Wherever you are in your journey of talking about what matters most to you in your end-of-life care, we are here to help.

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A mother and daughter discuss the conversation. Watch the video here.

Suggested Social Media Post: A mother & daughter talk about the importance of advance care planning. It is a conversation everyone should have. This #NHDD, talk to your loved ones: https://goo.gl/qCu5Zh

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A mother and son talk about advance care planning. Watch the video here

Suggested Social Media Post: A mother & son talk about the importance of advance care planning. Want to talk to your friends or family about your end-of-life care wishes during #NHDD? @ConvoProject is here to help. http://ow.ly/R4Hi30iyAzx #TalkingMatters #eolc

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A father and daughter talk about what matters. Watch the video here

Suggested Social Media Post: Real people are having the conversation and talking about what matters. Have you had the conversation? @ConvoProject is here to help: https://goo.gl/AU2n3P  #NHDD #TalkingMatters

 

We encourage you to use these videos to promote advance care planning in your communities. We have some suggested social media posts to help get you started!

Suggested Social Media Post: Talking matters when it comes to #eolc and advance care planning. Start with you & your loved ones this #NHDD: (https://goo.gl/FjwPgt).

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Empowering Healthcare Professionals to have Effective Conversations about Advance Care Planning

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Empowering Healthcare Professionals to have Effective Conversations about Advance Care Planning

When joining The Conversation Project’s National Healthcare Decisions Day (NHDD) initiative in April 2017, our Bioethics team at Baptist Health South Florida (BHSF), reached out to various community groups to educate on the importance of having the conversation about Advance Care Planning. We had a successful two months between April – June 2017, visiting a total of 7 groups; attended by over 100 engaged participants.

Following this successful community initiative, I remained enthusiastic about sharing information on The Conversation Project. I found myself eagerly discussing it with our healthcare professionals as I conducted bi-monthly Bioethics orientation for new employees. Additionally, when responding to ethics consults, I had further conversations with various disciplines. The question I posed often was - “Have you had the conversation about what matters most to you at the end-of-life?” Surprisingly, very few acknowledged they had the conversation about what mattered most to them. Yet, many expressed that more community education was needed. The question then came to mind – “Who is our community?” I realized then that our healthcare professionals were a diverse representative of our community. They were our community!

I immediately discussed with our Medical Director and Bioethics team the idea of empowering our healthcare professionals to have their own conversation by providing them with the education, tools, and resources. Ultimately, the expected goal was that they in turn would educate their family and friends to help impact an even larger population of our community.  Subsequently, I met with the manager of our CME department who willingly embraced and supported our plans to offer a CME/CE education session called – “A Guide to Effective Conversations about Advance Care Planning”, as an incentive for physicians and other healthcare professionals to attend.

By September 26, 2017, the first CME/CE (1.5) education session was conducted by myself and our Medical Director, Dr. Ana Viamonte-Ros, with 21 participants of physicians, psychologist, nurses, and social workers. The 1 ½ hour session included didactics with videos and small group activities. Since then we have coordinated 2 additional CME/CE sessions that have been well attended by our interdisciplinary team of healthcare professionals, totalling 51 participants. Overall, participants appreciated the tools and resources provided such as The Conversation Starter Kit, links to videos, and Advance Directives document. We have created our own canned version of Florida Statute Advance Directives document which are available in English, Spanish, and Creole to meet the needs of our diverse population. In gathering feedback from our participants, approximately 15 already had the conversation but planned on reviewing their documents again; 7 indicated they were going to complete an Advance Directive; 6 were going to discuss with family, while 11 were going to help someone complete an advance directive.

As we prepare for NHDD 2018, plans are to engage more community groups in education sessions during the month of April. However, we will continue our mission of empowering our BHSF healthcare professionals by continuing to offer quarterly CME/CE education and providing them with the tools necessary to have effective conversations about advance care planning.

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Author: Rose Allen

Rose Allen, DNP, MSM/HM, RN, CHPN is the Director of the Bioethics Program at Baptist Health South Florida (A 9-hospital health system, with outpatient and urgent care that serves a diverse population)

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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

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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

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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?

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How can National Healthcare Decisions Day change our culture?

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

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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

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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

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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

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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

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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!

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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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