The Importance of Careful Advance Planning


The Importance of Careful Advance Planning

It’s notoriously tough to make Minnesotans open up.

Whether it’s “Minnesota Nice” or reserved Midwest sensibilities, Minnesotans tend to be quiet, private, and polite. They’re not the types to talk about death, disability, and tragedy with a total stranger. Yet the Minnesota Elder Justice Center, Legal Services of Northwest Minnesota, and Elder Law Section of the Minnesota State Bar Association are gearing up for just that – a 2-location, 4-hour advance planning blitz for National Healthcare Decisions Day on April 16th. Each organization is dedicated to improving the lives of Minnesotans in need through legal representation, advocacy, policy work, and education.

In a small St. Paul office overlooking slushy train tracks, a team has been planning this day for months. Chris Courtney, Victim Services Coordinator for the Minnesota Elder Justice Center, is spearheading Minnesota’s National Healthcare Decisions Day event. With legal aid groups hosting their own clinics in northwest and east-central Minnesota, Courtney is focused primarily on the “Metro” area, covering Minneapolis, St. Paul, and their suburbs. Over the last several weeks, she has assembled a crack team of legal professionals from private practice, academia, and local nonprofits to organize and execute this one-day event.

Working with abused and exploited elders every day, Courtney stresses the importance of careful advance planning. “It’s not about having these documents,” she frequently says about healthcare directives and powers of attorney. “It’s about whether they name the right person.”  Courtney knows that advance directives with unscrupulous agents do more harm than good. Her goal is not only to execute these documents in April, but to ensure they won’t be an instrument for abuse and control.

Courtney’s team, along with nearly 50 volunteers from the legal community, will draft and execute powers of attorney and healthcare directives for Minnesotans in need. To make these potentially difficult subjects less challenging, volunteers will use games and hypotheticals to start the conversation with clients before they meet with an attorney to draft and execute the documents. Attorneys aren’t technically necessary to execute these documents in Minnesota, but their experience and perspective will help clients choose the right options—and the right agents—for them.

Courtney and her team are accepting reservations for the clinic at Episcopal Homes in St. Paul, and they are equipped to help nearly 100 people in the 4-hour period.

For more information or to volunteer, email


Submitted by: Nora Huxtable

Minnesota Elder Justice Center - 2610 University Ave. Suite 530, Saint Paul, MN

(651) 440-9300

Facebook: Minnesota Elder Justice Center

Twitter: @elderjusticemn



Embracing the Mission of National Healthcare Decisions Day


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


Twitter: @MWHCConnection

Instagram: @MWHCConnection


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

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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, called me personally with an offer to visit Bellingham for NHDD 2019!  

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



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


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.


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


National Healthcare Decisions Day: Get Inspired and Get Involved!


National Healthcare Decisions Day: Get Inspired and Get Involved!

Looking for inspiration from others as you plan for National Healthcare Decisions Day? Check out the ideas below. We’ve compiled a list of  ideas from community members, coast-to-coast, who shared with us what they were planning for NHDD 2018. Additionally, check out these suggested activities. Or, listen to The Conversation Project’s Feb 2018 community call and/or review the slide deck to learn more on what groups are doing to promote NHDD.

Run a targeted educational series or use a broader social media approach: One hospice in Arizona planned to run a three-day collaborative educational campaign for community healthcare professionals. A hospital in New Jersey planned an 8-week community series on Advance Care Planning (ACP), including hosting an author discussion and 2 CEU programs for hospital and long term care social workers. One hospice in Hawaii noted they would run a social media campaign to promote awareness and hold at least one session on ACP for a local healthcare facility or church. A state government health agency in Washington planned a series of workshops, a collaboration to develop a Governor’s Proclamation for NHDD, and a newsletter that would reach tens of thousands of long term care clients. A healthcare industry association in Arizona planned to ask their staff and board of directors to fill out their directives, and will share those photos on social media. They also are considering hosting a twitter chat. They also plan to make sure their staff members and hospital members lead by example and complete their own Advance Directives.

Coordinate with those already doing ACP work in your community or tap into community groups where you already have a (non-ACP) connection: One organization in Pennsylvania was considering a collaborative initiative with local community partners. Another noted while she wasn’t running something herself, she planned to share NHDD information, resources, and ideas with local healthcare organizations she worked with. One community member in Illinois noted she was on the Board of a local domestic violence shelter and planned to connect with them about conversations and importance of Advanced Directives for victims of domestic violence that are married to their abuser. Several other community members noted they would host one-time events targeting a specific group they were tied to in the community, such as a retirement center or faith congregation.

Work with financial and legal advisors in your community:  One community member in Tennessee noted she would speak at an April 16th event hosted by a trust attorney, an elder care law attorney & a financial adviser for approximately 50-100 clients and prospects.

Bring information to employees in your organization:  One healthcare organization in Arizona noted they would host Conversations with staff over breakfast and run a workshop for staff with information on Advanced Care Planning. Another healthcare system in Georgia planned to conduct a follow-up survey of staff to see if the percent having Advance Directives (ADs) has increased since their past NHDD efforts. They planned to host sessions for chaplains to stop in, obtain information and get assistance for completing their own ADs.  They also planned to write an article in their communications to physicians about how they can bill for advance care planning. Lastly, they planned to expand their reach to other county/city employees by having advance directive information at county/city health fairs. A healthcare insurance plan in Massachusetts planned internal employee educational sessions, focusing on defining the medical terminology and advance care planning documents to get employees informed. A health care system in Michigan planned to have ‘tables’ at their eight hospitals to distribute ACP documents; information gleaned from The Conversation Project resources will be on their intra- and internet sites and also in their employee newsletters.

Go Big! Set a community-wide goal and create events across multiple sites in your region: Last year, one healthcare system in North Carolina set a goal of reaching 1,000 individuals and having 200 ADs completed (up from 151 ADs competed last year!). They planned to host a community event to launch their week of activities and kick off the week with a story from an employee, that would reach 65,000 employees in their system via intranet banner  Throughout the week, they planned to host over 25 event sites across the region. One community member in Illinois noted her organization was trying to expand their typical community reach by sponsoring a multi-day public art project around Chicago, engaging residents with a question like “How do you wish to live well at the end of life” and having graphic facilitators/cartoonists depict the city’s vision of “living well.”  She was hopeful that would spark social media engagement among participants, and help with trying to get a resolution passed in the Chicago City Council. Another organization decided to have a NHDD be their year-long mission. They planned to launch and educate their staff mid -March, having a celebration around the launch and then develop a healthcare CME education program. A Regional Health District partnership in Iowa planned on running presentations for their community on April 16, featuring the two hospice/palliative care physicians from two hospitals. This would be followed by an optional table top workshop on completing advance directives. This group also hosted three presentations in the last 3 months of 2017, produced a video and provided information on their website using Conversation Project and Canadian Speak Up resources. They also have a community group of clerical, legal, medical, and educational leaders coordinating activities.

Start Small! NHDD starts with You: One community member noted she received encouragement on ‘walking the talk’ on The Conversation Project (TCP)’s NHDD community call and committed to completing her own advance directive and helping her family members to do the same.  Another community member planned on running an article in her local newspaper. And, another community member in Rhode Island planned to present various resources to a local leisure learning group she was part of and lead a group discussion. You don’t have to go big, one conversation can start a spark!

Interested in learning more? JOIN US on February 20th from 3-4pm EST for our next Community Call in preparation for NHDD 2019Register here.

What are you doing or thinking of doing for NHDD?  Tell us here!  


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


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


Having the Conversation - Once is Not Enough


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.

SueHoben (2).jpg

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.


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.


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:


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. #TalkingMatters #eolc


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:  #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: (

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Empowering Healthcare Professionals to have Effective Conversations about Advance Care Planning


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.

Rose Allen.png

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)


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


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.


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


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


How can National Healthcare Decisions Day change our culture?


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...


March 2014 News Roundup


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.


February 2014 News Roundup


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.


January 2014 News Roundup


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

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

Dying: What no one wants to talk about

A great resolution involves pre-planning

No one wants to talk about death, but you need to anyway,0,5263335.story#ixzz2qXakYdqR

End of Life Planning in Japan

Tips on how to create a living will

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

Having a say in your health care when it matters most

Digitize your advance directives

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

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

This holiday season, give the gift of planning

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

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

Researchers investigate new way to improve end of life planning


One Share At A Time


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