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advance care planning

The Importance of Careful Advance Planning

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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 nhdd@elderjusticemn.org.

 

Submitted by: Nora Huxtable

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

(651) 440-9300

https://elderjusticemn.org/

Facebook: Minnesota Elder Justice Center

Twitter: @elderjusticemn

 

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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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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!

Micki+Zodiac.jpg

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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Plan for No Regrets...

Some of us have the best of intentions when it comes to our plans to complete our advance directives or start the advance care planning process with our families. But, our intentions to plan for the medical unknown are often waylaid by our fears or what we perceive to be our loved ones' fears of discussing such things.

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NJHPCO's Telling, Touching Video

If you’ve ever sat down to have ‘the conversation’ about advance care planning with your family members or even your friends, you’ve probably had to assure someone that you didn’t want to talk about death, but how they plan for life circumstances. It’s something we’ve said time and time again and something that we stand by.

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Have you planned?

A personal call to action and story from advance care planning advocate Shalama Jackson, writer and Board Member of Carolinas Healthcare Public Relations and Marketing Society.

If you were incapacitated, would your loved ones know what type of health care intervention you would want? Would your family know who you would want to speak for you if you could not speak for yourself?

The possibility of becoming physically or even mental incapacitated by either accident, injury or illness is very real and one that should not just be ignored.

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Ending the Cycle...

The Story of Two Loved Ones Who Didn’t Have the Benefit of Advance Directives in Their Times of Need...

Jacqueline Janssen
"Marilyn Geary and I, like most boomers, have suffered losses. When commiserating with each other at dinner at Café Gratitude in Marin County, we came up with the idea to help other boomers finish their plans.

Marilyn’s story…
Marilyn lost her husband to emphysema, and though he used an oxygen tank, they were both in denial. Their son was fourteen when it became clear her husband was dying. She did not know if he wanted to be buried or cremated. She kept him on life support until she could drive to several cemeteries to select one she thought he might prefer.

My story…
My siblings and I lost both parents when they were young adults. The siblings embraced different religions and fought over funeral directions. My father ended up with a traditional ceremony, though I maintain he would have wanted jazz, bourbon and Zen poetry. Over that and asset distribution without wills, it took the siblings, who had been close, years to reconcile.

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Today is the day!

That's right; it's finally April 16, 2011—today is the Fourth Annual National Healthcare Decisions Day!

We’ve challenged our friends, family members, neighbors, colleagues and complete strangers to ‘have the talk’—to confront their healthcare decisions head on before it’s too late! That was only the lead up and today is just the beginning of our wide-ranging effort to spread the word about the importance of advance care planning. However, we have worked hard spreading the word to date. So today, in our NHDD blog posts, we’ll celebrate our efforts. We’ll post new ‘have the talk’ stories, interesting tweets, pics from events held in honor of NHDD this week and even a relevant video or two.
So let’s get the ball rolling with Amber, 7 years old and already an advance care planning advocate. She posted this video message yesterday:
Check back every hour on the hour for our celebratory NHDD posts.

 

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'Empowered': One CEO's Take on ACP

In our efforts to bring you the importance of advance care planning through the eyes of varying individuals nationwide, we cast a wide net. Most recently we caught up with a well-respected leader in the hospice and palliative care community— Malene Davis. Davis is President & CEO of Capital Caring, one of the first and largest nonprofit providers of hospice and palliative care services in the United States, serving thousands of patients across six regional office locations throughout the metropolitan Washington, DC area. And, we were able to steal a few moments of her time to get the scoop on what advance care planning means to her. Here are some highlights from that interview:

Q: What was it like when you first completed your advance directive?

A: I was naturally a little hesitant. This is not an easy thing to approach for anyone, no matter what your age, or your profession. But I also felt empowered because I knew I was planning ahead in the event my health was compromised to a point where I couldn’t make decisions anymore. I wanted my family to feel assured that things were in order so they will never have to guess about what decision to make, especially during an emotionally charged time.

 

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The Pledge

 

So you’re an individual in an organization that isn’t doing anything for NHDD, what can you do? ... The Pledge!
 
We can all start with ourselves... including me! I did my advance directive about three years ago, and since then have learned that the person I chose as my agent hates hospitals. I chose this person because they are the most practical decision maker in the family so I thought it made sense if the situation arises where difficult decisions need to be made about my healthcare, he could be the one to do it. Well except for that thing about hating hospitals.
 
So now we’re just two days from NHDD and I’m going to take the pledge to update my advance directive, and do my absolute best to discuss my wishes with my family. One of the hardest aspects of advance care planning for me in the past has been discussions with my family. Just the thought of it makes me slightly anxious. I think they hear me talk about how important it is so often that they don’t hear me. So I get disappointed, if I can’t talk to my family about my healthcare decisions, who am I to be advocating to anyone else about how important advance directives are? This is something Christian Sinclair and I have often discussed and as disheartening as it may be, sometimes your family sees you as just that, family, regardless of the insight you may have from your professional experience.

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HaveTheTalk

Tonight the hospice and palliative care online community will be dedicating their weekly #hpm Tweetchat to discussing advance care planning with the #HaveTheTalk hashtag as a way to support the NHDD initiative. 

But lets take a step back and start off with some basics... so this # symbol, what is this about? 

For people not on Twitter, we’ll start by explaining a hashtag which basically is a way on Twitter to organize Tweets (short messages on Twitter) around a topic. Placing the # symbol in front of a word

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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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Advance Care Planning: Confessions (Cont'd)

Today, we'd like you to glean some inspiration from the continuation of Janice Lynch Schuster's telling advance care planning journey. Part one of 'Advance Care Planning: Confessions' was this week's Wednesday evening post.

Part 2 of 2 by Janice Lynch Schuster

(To the left Schuster is pictured with her four children; Meredith, mentioned in this piece, is the young lady on the far right)



Writing: 1997

In the late 1990s, I got involved in working with Dr. Joanne Lynn and Americans for Better Care of the Dying. Through that work, I came to understand and appreciate the importance of completing an advance directive, of naming a health care spokesperson, of making sure that one’s wishes and preferences are known. I wrote about admirable and successful programs, from Respecting Choices in LaCrosse, Wisconsin, to The Five Wishes document available online. I read about values questionnaires and life reviews. I wrote about how important it is for families to have the conversations, to record their wishes, to make sure that their wishes are known to one another and to their health care providers. I helped to write several books on improving care for the end of life, and in each one extolled the importance of creating an advance directive, describing it as a gift to families, a way to help them avoid heartbreaking and divisive decisions that can occur when no such plans exist.

And yet I was a hypocrite—for all my talk, I had not completed my own advance directive. I thought about it, talked about it, described my wishes to my husband, but never went so far as to put anything on paper. Then, in 2001, when my fourth child was born, I decided to complete an advance directive form as part of my labor and delivery. When I asked the nurse for the hospital’s standard form, she laughed. I was there to give birth, she said, not to die. Even so, I was by then an older mother, aware of the many complications that could arise during the most routine births. I insisted that I be given the form, which I dutifully completed, noting that if it came to it, sparing my life would be more important than sparing the baby’s. It was a selfish but essential thing to do; several other children then depended on me as their mother.

When I’m Gone

I saw a book advertised that I thought would help me through the process; if nothing else, it would give me a place to write down the scores of passwords and usernames I have developed in my prolific online life. I looked forward to the book, which is a nice spiral bound compendium of some 144 pages. I opened it, was promptly overwhelmed by it, and closed it. It sits on a bottom shelf, gathering dusk and triggering my guilt.

I don’t want to be morbid

My 18-year old daughter recently sent me an email message with the subject line, “I don’t want to be morbid.” For some reason, her abnormal psychology class was discussing the importance of creating advance care directives, and Meredith felt that she and I should sit down and craft hers. She didn’t want to think about dying, she said, but she did want to think about what she would want done if she were in a car crash and unable to live, breathe, eat, or think on her own. She asked if I could help her with this, and I promptly referred her to The Five Wishes website, which seems the easiest and most straightforward form to complete.

In hindsight, I realize that I need to sit down with her and complete this form together. We need to have a conversation, each of us, about what we want and don’t want, about what we fear and what we hope for. We think we know—but until we begin the dialogue, we are only guessing at beliefs, based on our own experiences. Today happens to be Meredith’s 19th birthday. As a present to her, I am making a promise to myself—and to her—to sit down together and go through this process.

Janice Lynch Schuster has written extensively about improving care at the end of life. With Joanne Lynn, she coauthored two books on quality improvement for end of life care: Improving Care for the End of Life: A Sourcebook for Healthcare Managers; and Clinicians and A Common Sense Guide to Improving End of Life Care (both from Oxford). Currently a senior writer with Altarum Institute, Schuster’s past work includes serving as director of communications for Americans for Better Care of the Dying. Her work has been widely published and is often featured in The Washington Post. She has received several blue pencil awards for her work with the National Institute on Aging.*

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Advance Care Planning: Confessions


In this telling, two-part post, Janice Lynch Schuster, this week’s NHDD guest blogger, acclaimed end-of-life care advocate and writer shares her very personal experiences with advance care planning.
Part 1 of 2 by Janice Lynch Schuster



My Grandmother: 1994
Many years ago, when my grandmother was dying of kidney cancer, we thought we had an advance care plan that clarified her wishes not to suffer or to be a burden to the family: We would pull that archetypal plug. We were naïve, having never been exposed before to a dying person, and we thought that, in fact, there would be one big plug that tethered her to some kind of life support, and whose unplugging would free her spirit from this life. It turned out, of course, that no such plug existed. To be sure, she was plugged in to an array of medical devices and monitors, but unplugging anyone of them would not have brought a swift end to her suffering—in some cases, it might even have prolonged it. And as her pain and suffering grew ever more intolerable and intractable, my family pleaded with the health care team to end my grandmother’s pain. They could not—and so the few wishes I had heard her express for the end of her life went unheeded. She did not, as she had wanted, die at home. She was transported, as she had not wanted to be, back to the hospital by ambulance. She was in near constant pain. And her final hours were not peaceful and dignified. Despite all of our plans, nothing went as it should have or as we expected it to.

Birth: 1990
When I was pregnant with my first child, I made an elaborate, pages-long birth plan for all of the many eventualities that I thought I might want to accompany his birth. I wanted my husband in the room, of course—and I wanted music, tapes, tennis balls, warm socks, a bathtub, and all of the other happy distractions that were meant to take my mind off the work at hand. Also, I did not want an epidural or an episiotomy, I did not want a C-section or a forceps delivery, I did not want to be shaved and I did not want to be in stirrups. When labor began in earnest, my birth plan went out the window. The epidural was administered, compromising my ability to push and leaving me with a forceps delivery and an episiotomy from which it took months to heal. My single experience of trying to plan for my own health care wishes and preferences had failed miserably—mostly because of my own failure to understand or believe that childbirth, for all we know about it, is a messy, painful, unpredictable, and emotional experience. It did not matter what my wishes were, once the reality of my situation came to pass. It was all I could do to get through it. The next three times I gave birth, I made no plans whatsoever, other than to get all the painkillers I could when I could. And even that didn’t always work out. It eroded my faith in being able to plan for health care.

Want to get the rest of Janice's compelling advanced care planning journey? Check out tomorrow’s evening post for part two of "Advance Care Planning: Confessions."

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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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Making Our Mark in the Media: Advance Care Planning News Round Up

As we work with organizations and advocates throughout the nation to promote the value of advance directives to our families, friends, colleagues –and to everyone else we come into contact with on a daily basis—the topic is attracting more and more media coverage and overall, exposure. And, that’s what we’ve all been working so hard to achieve because increased exposure equals an increased opportunity to spark the conversation about advance care planning. So from now until April 16, 2011 when our efforts to raise the profile of advance directives over the past 12 months culminate into the observance of the Fourth Annual National Healthcare Decisions Day, we’ll be posting the “Advance Care Planning News Round Up” twice a week. Here’s what we have for you today…

Just yesterday, Aurora Health Care, in partnership with Aging with Dignity, explained how they are working together to give a voice to patients who may not be able to be heard during a medical emergency by posting “Five Wishes: how has advance care planning improved?” Available for you to view below, the short video discusses how the Five Wishes advance care planning tool has made completing advance directives more patient friendly.


In the past few days, we’ve also found two NHDD mentions garnered through the media outreach work of participating organizations:

In a short, but effective letter to the editor titled “This will help you take care of your own health care destiny,” NHDD participating organization Western Maryland Health System Hospice Services highlights the importance of the initiative and having advance care planning conversations in general.

While scanning the newswire, we ran across the MedicAlert Foundation’s recent press release urging ‘All Americans to Make Their Wishes Known in Recognition of National Healthcare Decisions Day - April 16th, 2011.’

And of course you are all familiar with the two WSJ articles we highlighted last week on this very blog. See NHDD team member Christian Sinclair's "One Month Until National Healthcare Decisions Day" and "Wall Street Journal discusses POLST and Advance Care Planning" posts.


Know of other NHDD or advance care planning media mentions? Or has your organization been working hard to get the word out about NHDD? Keep us in the loop by emailing nhdd@klxmedia.com.

Look for our second Advance Care Planning News Round Up on Thursday.

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