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NHDD

Embracing the Mission of National Healthcare Decisions Day

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Embracing the Mission of National Healthcare Decisions Day

My mother and father recently planned a European cruise. They established a budget.  They determined the amount of time they wanted to travel. They created an itinerary and booked accommodations. They made certain their travel documents were in order.  For many weeks before the trip, they shared information about their travel plans with my siblings and me.   

My parents are very hesitant about discussing their end-of-life wishes.  My parents are not irresponsible.  They know how to plan.  Their planning can be exceedingly concise where while on vacation my sister, brother, and I know the day and hour my parents will eat pizza in Napoli.  What can we do to help create a culture where advance care planning is considered as necessary and beneficial as planning a vacation? 

Located in Fredericksburg, Virginia, Mary Washington Healthcare is a not-for-profit regional system dedicated to improving the health of the people in the communities we serve.  The Mary Washington Healthcare Ethics Committee has embraced an Advance Care Planning Campaign incorporating The Conversation Project resources. There is a general reluctance people have to thinking about death and dying.

We find an understanding of advance care planning can be instrumental in improving healthcare outcomes and alleviating this reluctance.  At Mary Washington Healthcare we:

Embrace National Healthcare Decisions Day (NHDD).  In recent years, we are increasingly seeing people who come to our hospitals specifically to learn more about Advance Directives.  We are looking forward to participating in NHDD activities this year.   

  • We will promote NHDD in local media outlets and invite local media and the Community to the event. Learn more here.

  • We will have Associates who are comfortable walking people through the Advance Directive process at the event.  We hope to have some participants who leave the event with a legal, signed Advance Directive.

  • We will have a “mini-registration” for people who have never been patients in our system, so that we can scan their Advance Directives into our electronic record in case they do present in the future.

  • We will have displays, refreshments, both internal and external speakers, participation by LifeNet and The Conversation Project. 

  • We will provide Advance Directives, both a long and a shorter, simpler version in English and Spanish. 

Inform Providers. It is common for healthcare providers to wait for the patient to begin the conversation about advance care planning.  We encourage providers to take the lead in initiating a conversation about advance care planning. 

  • We created a Palliative and Hospice Care Physician Resource Guide. The Guide highlights advance care planning resources. The Guide includes an Advance Care Planning Billing Guide.  

  • We have recorded an advance care planning podcast which we share with physicians. Click here to access the recording.

Identify Opportunities.  Seek organizations who are committed to improving healthcare outcomes and ask to partner. 

  • We utilized the opportunity to feature the documentary, Being Mortal. The opportunity was coordinated by the Hospice Foundation of America from funds provided by the John and Wauna Harman Foundation.  We partnered with our local library system to screen the documentary at our regional libraries.  Each screening was followed by a post-documentary panel discussion.  

  • We partnered with AARP Virginia’s Movies for Grown Ups.  We screened the movie The Theory of Everything.  The screening was followed by a panel discussion on advance care planning and caregiving. 

  • Every year, we partner with the Spotsylvania, Stafford, Fredericksburg TRIAD and present advance care planning information at their end of life series.   (The TRIAD is a Cooperative Agreement between AARP, International Association of Chiefs of Police, and the National Sheriffs’ Association.  Their mission is to protect our growing elderly population. Click here to learn more.)

Provide Tools.   Provide copies of Advance Medical Directives, The Five Wishes, and The Conversation Project Tool Kit.  Utilize every opportunity to present and provide these resources.

  • We have found most people are not ready to complete an advance directive immediately after we present advance care planning material. We are establishing advance care planning office hours where people can ask questions about advance care planning, including receiving assistance to complete an advance medical directive.  

Ask for Advice.  Seek local leaders who may be able to help with public engagement campaigns and provide networking opportunities.

  • Our local Chamber of Commerce Leadership Fredericksburg Program selected Mary Washington Healthcare’s The Conversation Project in the Fredericksburg Region initiative as a project.  Leadership Fredericksburg examined creative ways to create a multi-faceted marketing strategy to promote advance care planning awareness in our region and provided feedback to our team about funding opportunities (click here to learn more).

 

Meaningful and lasting change takes time.  We continue to educate and encourage staff, patients, and families to get their thoughts together, talk to their providers and loved ones, and document their wishes.  I continue to embolden my parents to discuss their end-of-life wishes with my sister, brother and me. Perhaps my parents will be more motivated to advance care plan if they are enticed with a vacation. Mom and Dad, can we cruise?

 

Terri McAuliff is the Community Liaison with Mary Washington Palliative, Hospice, and Grief Support Services.   

 

To learn more about Mary Washington Healthcare’s efforts contact Terri McAuliff or Ashland Evans, MHA, CHPCA Director, Palliative, Hospice, and Grief Support Services.  

 

Mary Washington Palliative, Hospice, and Grief Support Services

2300 Fall Hill Avenue, Suite 401

Fredericksburg, VA  22401

540-741-3580

www.mwhc.com

Facebook.com/MaryWashingtonHealthcare

Twitter: @MWHCConnection

Instagram: @MWHCConnection

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Bring a shovel: One community’s NHDD story and lessons learned for the future

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Bring a shovel: One community’s NHDD story and lessons learned for the future

The Fox Valley Advance Care Planning Partnership is located in Appleton, Wisconsin and we serve the surrounding area. We are a collaboration of two large health systems, a family medicine residency clinic, and the community with the goal of making advance care planning and conversations an integral part of living. While we like to think of every day has National Healthcare Decisions Day, we do like to commemorate April 16th in a special way each year. 2018 was an exciting year as we chose to engage providers on a wide scale and invited doctors, nurses, social workers, and other clinicians throughout northeast Wisconsin to come together, learn about the Advance Care Planning Partnership, and learn from a leader in the field, Dr. Art Derse from Froedert Health System in Milwaukee, WI.

 

This event was successful as we were able to engage a diverse group of providers, including those who are key champions for this work and others who had no idea that a collaborative and local resources even existed. We connected over appetizers and refreshments, listened to a beautiful musical presentation by a renowned local palliative care physician and his mother-in-law and, importantly, had an opportunity to tell our story including where the Advance Care Planning Partnership came from and where we are going. Our learning session was fantastic and included continuing medical education (CME) credits, which was well appreciated.

 

There are always challenges in engagement and events, including weather— in our case this was in the form of a late-spring snowstorm. About 2/3 of attendees who RSVP’d to the event ended up coming, so while it was smaller than expected, it wasn’t empty. In addition, engaging providers is a challenge in itself. We were very cognizant of the timing of the event, the location of the event, and including CME to entice attendees who required credits. In all, organizing events are challenging. When working with our teams, we keep this in mind and weigh the benefits and consequences of the type of engagement we are planning to pursue.

 

This year, NHDD will be more widespread and we are doing more to engage our partners to take the lead with support of the Advance Care Planning Partnership. Our coalition takes pride in the fact that we are utilizing collective impact theory and do nothing on our own—all work is in collaboration and to support our partners to achieve their mission and support ours. We are working with members to reach out to a number of assisted living communities and our health care facilities with key information and guidance back to our resources and facilitators. We also have strategically planned a multi-part community education session over this time and will be holding a faith-based series, too. While we do this work at other times of the year as well, this is a great talking point and can help to make the messages stick with community members.

To conclude, April 16th is a fabulous opportunity to reach out, get the word out about advance care planning and local resources, and engage current and new partners in this vital work. But, let’s be honest, every day is a great day to do this! Don’t let your message get lost in the shuffle and as you plan NHDD this year and beyond; think about impacts that are lasting and actionable.

Submitted by: Ellen Koski, MPH, CPH. Director, Fox Valley Advance Care Planning Partnership.

229 S. Morrison Street, Appleton, WI 54911

(920) 997-8412

www.FVACPP.org

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Planning, Organizing and Leading NHDD Activities: Persistence and Passion Required

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Planning, Organizing and Leading NHDD Activities: Persistence and Passion Required

My husband's first heart surgery was as a teenager. It gave him many healthy years, a rewarding career and adventures that most people could only dream of. Decades later, he had two emergency heart surgeries within three weeks from cascading issues related to congenital defects.

His cognitive abilities suffered from those surgeries. With time and hard work, he recovered much of his brain function, but never to prior capacity. However, with his indomitable spirit – and a cardiologist who listened and honored his values—Bill lived a remarkably good life.

My experience as his caregiver in the complex maze of healthcare convinced me that we need to get serious about weaving advance care planning (ACP) into our social fabric, not only for older populations but also for young people, to ensure better outcomes in end-of-life care.

Bill's death sparked me to action.  

Organizing NHDD 2018 Events

I've organized many events, including The Realities of Advanced Medical Interventions which has reached over 2,200 people. This event provided attendees with information about ACP, choosing a reliable healthcare agent, advance directives, and understanding what a POLST is.

In 2018, supporting National Healthcare Decisions Day (NHDD), I conceived a program called “What's up, Doc? We're dying to talk." Promoted as an intergenerational conversation featuring 7-minute vignettes related to mortality, the speakers represented people from ages ranging from their 20’s through their 90’s. To generate student interest, I raised $7,500 and divided those funds into five $1,500 scholarships as door prizes.

Initially, when I described the plans, skepticism abounded. One person said, slapping the table for emphasis, "Good luck! We've been trying to interest older people in this [ACP] for years, and you expect young people to show up!" I did not let this waver me—I continued to move forward with my plan.

Because humor is the great equalizer, I booked an improv theatre professional as master of ceremonies. Gratis! There was laughter, tears, fun, live music, food, and friendship. 

Sure, the culturally and racially diverse, overflow crowd was lured by the scholarship prizes, but the event was a measurable success. Students remarked that they would tell their parents what they want: "We will have the conversation." "Wow, this is important stuff." "Now, I get it!" 

One of the scholarship winners, a nursing student, subsequently attended an ACP workshop with her boyfriend, both completing and notarizing their advance directives.  She intends to become a certified volunteer ACP facilitator after graduation this spring. Another winner, a member of the Lummi Nation, reported in the Northwest Indian College student newspaper, "the event opened up a dialogue on campus."

 

Planning for NHDD 2019

Supporting NHDD 2019, I have proposed a lead-by-example campaign: "I've Got Mine!". This campaign is in collaboration with PeaceHealth Medical Group. I've taken myriad photos of physicians, nurses, chaplains, hospital and hospice volunteers, prominent community members, a superior court judge, county medical examiner, and others holding up their advance directive, illustrating that they have documented their end-of-life choices.  Their photos will be displayed on a "testimonial wall" at PeaceHealth St. Joseph Medical Center leading up to April 16.

A local nephrologist and I have secured a commitment from Bellingham's mayor and the Whatcom County Council Executive to issue a joint proclamation declaring April 16 as Bellingham - Whatcom County Healthcare Decisions Day. We're using community billboards around the county to promote the day. My husband's cardiologist agreed to a billboard as a persuasive testimony of provider buy-in. Whatcom Transportation Authority agreed, on a pro bono basis, when I asked for signage on WTA busses. Local firefighters IAFF chapter will post ACP-related messages on their electronic billboard. Our trash/recycling service will post an NHDD message on their high-visibility reader board, as will a community-oriented credit union. And, so on...

A local filmmaker and I co-produced a video titled “Have the Conversation” now used by numerous organizations. PeaceHealth posted it on their ACP web page, hospice groups in Canada share it with their audience and Providence Health & Services ACP facilitators use it in their work as examples.

Also, in support of NHDD, at my urging, a local musician composed a catchy tune that we used as the soundtrack for this short I've Got Mine! video. 

As a volunteer advocate, I've faced obstacles and frustrations in trying to mainstream the ACP message. The most disappointing experiences have been collaborating with large organizations. Some entities seem so entrenched in processes and procedures that they are incapable of understanding or being touched by the subtle –and not so subtle – ways they provoke discouragement. History validates that the seeds of change are in the grassroots -- change is rarely top-down—though it is essential to develop, and nurture, alliances with all stakeholders.  

A most gratifying payoff to my persistence is that Nathan Kottkamp, founder and chair of nhdd.org, called me personally with an offer to visit Bellingham for NHDD 2019!  

Now, that's a success! We look forward to welcoming him!

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Author:

Micki Jackson

Micki is a lifelong advocate for peace, justice, equality, inclusion, and equity. In addition to her work in improving healthcare, she is a member of the Friends Committee on National Legislation Bellingham Advocacy Team. She honors her wonderful husband every day -- his memory lights her path when things look bleak. Micki believes that young people are the future -- and that we should never lose sight of our responsibility and obligation to honor them through our actions.

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Sharing the Care Campaign: A Coalition’s Dedication to Supporting Their Community With Advance Care Planning

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Sharing the Care Campaign: A Coalition’s Dedication to Supporting Their Community With Advance Care Planning

“Hardships often prepare ordinary people for an extraordinary destiny” – C.S. Lewis

In 2017, a nurse approached one of our volunteers during National Healthcare Decisions Week, wanting to complete her advance care directives. After her mother passed, this nurse was left to help care for her ill father during his last moments of life. During an already stressful time, the situation became more complicated when the father’s girlfriend intervened and disagreed with his treatment.

This daughter had several conversations with her dad previously about his values and wishes for treatment, but unfortunately, he had never completed his advance care directives. The daughter and her dad’s girlfriend spent more time fighting about his care than supporting him during his final days. After enduring the terrible experience with her dad, this nurse completed her own directives. Then she shared her story with her co-workers, encouraging them to make sure their wishes were documented.

We hear stories like this daily. Imagine the pain and conflict that could have been avoided had this nurse’s father documented his preferences. Each of us has our own experiences that influence how we value advance care planning. This is what motivates us to help others complete their directives on National Healthcare Decisions Day.

In 2016, a collaboration was formed between Sharing the Care Campaign, UCHealth and the Larimer Advance Care Planning Team, united by a common passion to help individuals complete their advance care directives. Together, we held our community’s first National Healthcare Decisions Day event. This collaboration has helped nearly 1,000 individuals complete their directives.

Sharing the Care Campaign is a grassroots effort with a mission to “transform our shared suffering within the current health care system into meaningful patient and caregiver-driven changes to bring joy and connection into people’s lives.” 

UCHealth is a health care system covering eastern Colorado, western Nebraska and southeast Wyoming. It works to “improve lives in big ways through learning, healing and discovery; in small, personal ways through human connection.”

The Health District of Northern Larimer County operates the Larimer Advance Care Planning Team, a program dedicated to making advance care planning a natural and expected part of care.

Together, these organizations are leading efforts to transform National Healthcare Decisions Day into a week-long event. They host “lunch and learn style” presentations that introduce the basics of advance care planning. Volunteers help people complete documents at their cafeteria booths from breakfast through lunch, and they tour the nursing units to reach staff directly, even the overnight shifts.

UCHealth leaders’ support has been integral in motivating others to see and understand the value in advance care planning. Last year, the CEO of UCHealth in northern Colorado publicly completed his own directives and wrote a letter to staff encouraging them to complete theirs. This support from the top of the organization is pivotal. This ripple effect leaves a mark of sustainability and builds a culture of respecting patients’ wishes and values for medical treatment.

UCHealthcartoon.png

Once someone completes their advance care directives, the documents are uploaded into their electronic health record, making them easily accessible and giving peace of mind.

Despite our success, recruiting volunteers is a challenge. Each year we learn something new, which helps us to improve the next time around. In past years, we’ve received feedback that clinic staff would like us to visit their locations to help with forms. This year, we plan to concentrate more time at those hospitals and clinics and have extended our reach to a newly opened hospital.

We leave you with one last piece of advice for planning your own community event for National Healthcare Decisions Day: Collaboration, coordination, communication, and teamwork are essential for preparation and execution. I think we all understand and value the truth in the saying “two heads are better than one.”

With new clinics and hospitals, passionate volunteers, and roughly 340,000 people left in Larimer County to complete their advance directives, we’re excited to see what stories and experiences 2019 brings.

 

Submitted by: Liz Morgan, RN, BSN. Coordinator of Clinical Programs.

Poudre Valley Hospital and Medical Center of the Rockies - 1024 South Lemay Avenue, Fort Collins, CO 80525

Facebook: @uchealthorg

Instagram: @uchealth

Twitter: @uchealth

https://www.facebook.com/sharingthecarecampaign/

https://www.facebook.com/healthdistrict/

https://www.instagram.com/healthdistrict/

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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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NHDD Blog Rally 2011...

Rallying to Encourage and Empower Us All to Make Our Healthcare Decisions Now for the Unknown Later… 


College education. Career path. Relationships. Starting a family.

Buying or selling a house. Vacations. Retirement. From the age that we’re old enough to understand, most of us are taught and accept that these are the markers in life that we plan for. However, there’s one key marker that’s all-too-often missing from this list: healthcare decision-making. Like planning for these other life events, planning for the time (or times) that we are unable to express our healthcare wishes is of the utmost importance. It is something that should be well thought out, documented and revisited at different points in life to reflect any change in our desires or family situation or the person we wish to advocate for us. Unfortunately, it is a planning point that that majority of us have missed. As a consequence patients’ families suffer the added burden of having to guess when a health crisis happens. That’s why Nathan Kottkamp founded National Healthcare Decisions Day (NHDD) back in 2008 and why this nationwide advance care planning awareness initiative is as important as ever. So this year, I’ve joined my fellow bloggers throughout the country to spread the word about the importance of advance care planning with this special NHDD edition blog.

 

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Just 12 Days 'til NHDD 2011: Won't You Share Your Story?

So here’s my story:

I clicked the link to fill out my very own advanced care directive. What an odd feeling to be the ‘patient’ filling out this form. It’s a subject I’d broached with my family time and time again (and, they were having no part of it), something that I’ve publicly advocated for over a year and that I’d publicly and privately chastised others for either not doing or not being interested in doing. And now, here I was, finally making an honest advocate of myself. As I read the instructions, all I could think to myself was ‘who can I possibly trust to respect and voice my wishes? ’ I’m closest to my twin sister and my mom, but not only do they not even trust me to pick out my own wardrobe, I can’t even bait them into a conversation about advanced care directives. Oye Vay! So I read it again! After more careful thought, I decided that my mom might let emotion cloud her judgment and my advanced care directive may turn up missing. But Melissa – my twin sister – on the other hand, she’s a straight shooter. She might not like or agree with my choices, but she’d speak up because it’s the right thing to do.

Then, I got down to business, filling out the form! Luckily, this part was easy…what I had done for the past 16 months, is deliberate and clearly determine what I would or would not want done in terms of life sustaining treatments in various scenarios of terminal illness. Do attempt curative care in the initial stages of illness (if you haven’t already tried and failed) if physicians are hopeful of recovery or the odds seem like they are in my favor. DO NOT seek life sustaining care if it’s apparent that I’m dying and nothing is going to stop that process; let me live comfortably in my home surrounded by my stuff with hospice taking on the burden of care and giving aid to family caretakers. The details of which I clearly stated in the five lines allotted. And, it was a good feeling. In fact, ‘good’ may be an understatement, a wave of relief washed over me! My next thought was my next step: convince my family to have the same piece of mind I experienced when my advance directive was complete. So I guess my story is to be continued...

 

You may –or may not—have been able to relate to my advance care directive story. However, many of the people I’ve shared it with in hopes of sparking ‘the conversation,’ have. We want the NHDD initiative to inspire people from all walks of life to be moved to plan their healthcare decisions and so we need people from all walks of life to share their stories.

 

So, now I ask: after reading mine, won’t you share your story?

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NHDD Makes Headlines in the Midwest

That’s right; National Healthcare Decisions Day (NHDD) participating organizations must be working over time to get the word out because their efforts are paying off tremendously.

For today’s NHDD and Advance Care Planning News Round Up, we found an NHDD mention in the blogosphere...

In a recent post titled ‘Gearing Up for National Healthcare Decisions Day,’ Angela Morrow, RN—and author of About Palliative Care Blog—exalts the importance of advance care planning, and tells a little bit about her personal advance directive experiences.

Plus, as we scanned our news aggregators, we stumbled across not one, not two, but five news stories about NHDD in publications all over the Midwestern United States. So we've devoted this round up of NHDD mentions to that particular region...

In the Northwestern most part of the Midwest…

“Experts encourage sharing health care wishes,” a SCTimes.com story, highlights the efforts of The Central Minnesota Council on Aging (CMCA) to promote awareness of the need for advance care planning during NHDD 2011.

In the ‘mid-Midwest’…

The Northwest Herald reported that there is a “National Healthcare Decisions Day event planned at MCC.” According to the article, McHenry County, the Chicago End-of-Life Care Coalition (CECC) Northwest Branch will sponsor a free screening of a film in support of the NHDD initiative.

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Hot Off the Presses (ACP News Round Up): From NHDD Events to Social Media and Patient Health Care

...that’s just to mention a few. Advance care planning has been ripe for media attention for a while and the press is finally taking notice. So here's what they're reporting on:

As you know, the NHDD 2011 team has taken steps to broaden the reach of the initiative and engage more people through social media with @NHDD on twitter and the NHDD Facebook page. Well, recent Dayton Business Journal article “Patients flock to Facebook for health” says we’re doing it the right way! If patients are turning to social media more and more to make their medical decisions, they are certainly running across NHDD!


However, we’re not the only ones embracing non-traditional means of spreading the word about NHDD. In “A drama of dying wishes,” the Charlotte Observer reports that Mecklenburg End-of-Life Coalition and Hospice & Palliative Care Charlotte Region, is hosting three, free productions of during this and next month of “Vesta,” a play written about starting the advance care planning dialogue. The production has been deliberately timed to coincide with NHDD in an effort to help people “have the talk.”


Turning our attention away from the stage and back to the presses and the blogosphere, here are a few more noteworthy articles:

  • Also in the Huffington Post, Clinical Psychologist Joseph Nowinski’s post What to expect when a loved one receives a terminal diagnosis” is a great way to spark the advance care planning conversation with loved ones. After reading all that your family unit will have to endure and overcome upon receipt of a terminal diagnosis, I'd be thinking : 'why wait and add more stress by not planning in advance?'

To round out our news tidbits, our trusted resource @HospiceAction just informed us that long time advance care planning champion on Capitol Hill Rep. earl Blumenauer will be the keynote speaker at their up and coming Hill Day 2011. We'll keep our ears to the ground to find out what he's got to say about the importance of advance care planning, advance directives and NHDD.


Check back on Tuesday for more on the latest advance care planning news stories.

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Global Advance Care Planning: NHDD Inspires Innovation in Canada

My fellow, proud NHDD advocates, your eyes are not deceiving you and you haven’t misread the title of this blog post so there is no need to adjust your computer screen! You read correctly and the NHDD team couldn’t be more excited that just four days before we, here in the states, gear up to celebrate the Fourth Annual National Healthcare Decisions Day, our Canadian counterparts will be hosting their very own version of NHDD—“Advance Care Planning Day.”

Below is an advance care planning video featured on their site that we obviously love since it's a great resource!

We know it’s often said that imitation is the sincerest form of flattery, but in this instance it’s far more than that. The First Annual Advance Care Planning Day (ACPD), scheduled for April 12, 2011 is monumental! Why? In communities all over the world, we are taught to plan for our education, relationships, financial futures, children’s educations and retirements. However, this new international effort to promote advance care planning signifies that it may soon become universal standard for us to also plan for our unforeseen medical emergencies and end-of-life care.

Canadian Hospice Palliative Care Association (CHPCA) and ACPD Project Manager Louise Hanvey shared our hope that this is a step toward establishing advance care planning as a universal standard by first establishing it as a standard in our communities and nations— so for her, in Canada.


“Planning for the end of our lives is not easy, but we need to change our mindset about that,” Hanvey said. “Our [CHPCA and the National Advance Care Planning Task Force] main goal in launching this is captured in the initiative’s tagline—‘It’s about conversations. It’s about decisions. It’s how we care for each other.’ We’re all about connecting Canadian community organizations and leaders to the tools they need to spark the [advance care planning] conversation.”

We at NHDD would like to applaud the leaders of the Canadian National Advance Care Planning Task Force, CHPCA and all others involved in the planning of the first ACPD their nation has seen. Let’s all hope that NHDD and ACPD will serve as inspiration to advance care planning advocates worldwide and result in more similar awareness initiatives.

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