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The Living Fully Guide: Honoring What Matters Most at the End-of-Life. [Update 8-2, title, body, project needs. 8-3 Descri. 8-4 pilot ]

Community members would live more fully by having access to a local-centric EoL planning guide and provider list.

Photo of Justin Magnuson, MA, LMT
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Who is your idea designed for and how does it reimagine the end-of-life experience?

The Living Fully Handbook is designed to inspire inter-generational conversations between adults (25-40) with their parents regarding their end-of-life wishes, provide education, connection to local services, and connectivity between providers. The three phases of planning:
1- Awareness, Education, Advance Care Planning, Communication Tips, User Stories
2- Care (Medical Care, plus Social, Psychological, and Spiritual Needs)
3- Ritual, Body Disposition Options, Bereavement Support, Legacy

[Updated 8-1-16]

Background

The 2014 Institute of Medicine Dying in America report paints a startling picture of a system that fails to provide end-of-life care that is person centered, family oriented, and evidence based. The Conversation Project and John A. Hartman Foundation track equally disturbing trends regarding low rates of advance care planning and healthcare practitioner discomfort initiating these conversations. The IOM report recognizes the need for community based end-of-life planning and care that harmonizes with the social, psychological, and spiritual needs of patients and their families, but this system is currently fragmented, burdening patients, their families, and the overall healthcare system.

Organizations, such as The Conversation Project, are working to improve the low advance care planning rates. There are also online end-of-life planning guides, such as Get Your Shit Together or Living Smart Guide, that connect consumers to general information about advance care planning and options. However, none of these resources connect users to local professionals who actually provide services for patients or families. 

The Living Fully Guide is an initiative to create a community specific end-of-life planning toolkit, available both online and as a handbook, that would serve the purpose of providing end-of-life planning information and connect users to service providers.  This idea would improve the end-of-life experience by providing patients and their families an advance care planning “roadmap," increase connectivity between related professionals, and assistance finding service providers as families seek care nearing the end-of-life, during care, and post-death.

DESCRIPTION AND IMPLEMENTATION [Updated 8-4-16]

The Living Fully Guide  idea was generated by a work group that is part of a community health initiative to make Louisville the "model city to live fully into death." This group has formed slowly over the last several years in response to community conversations related to death and dying including Death Cafes, Let's Have Dinner and Talk about Death, and The Conversation Project. Several of these projects, started by Justin Magnuson (his story was shared on Open IDEO  here), evolved into collaboration for National Healthcare Decisions Day in the spring of 2016 and the current work group. 

The work group was first convened in March of 2016 and has been using an Open Space format to meet and discuss what needs to shift in Louisville and how to do it. The group recognized at the June meeting that Louisville is "resource rich, but systems poor" in our approach to death and dying.  Despite many resources in our community, there is not a system in place to connect users to advance care planning services, education, and service providers needed at the end-of-life. The idea was conceived that a "user guide" and education campaign could change this problem. 

The group is currently seeking resources and providers in the community to create the resource list. In addition to a resource list, web development and marketing professionals have helped outline the project feasibility, estimated project costs, and refined the Living Fully Guide development strategy. Relationships are being formed with content experts related to end-of-life; including hospice/palliative care experts, healthcare professionals, gerontologists, financial advisers, elder lawyers, psychologists, sociologists, clergy, funeral directors, and concerned community members. The planning and resource guide would be authored by an advisory committee representing these fields of  expertise. Additionally, these professionals would  provide inclusion criteria for service providers.  

Louisville, KY, would be an ideal city to pilot this project for several reasons. First, the current mayor has established bold initiatives to brand Louisville as a 21st Century city, including a Healthy Louisville 2020 initiative and being recognized as a model " Compassionate City." The Compassionate Louisville project has generated a city wide conversation about the role of compassion in our community and Louisville has been recognized as the "Most Compassionate City" for the last four years.  Over 100 local companies have signed resolutions affirming their commitment to Compassion as inspired by Karen Armstrong and the Charter for Compassion. The city's Healthcare Constellation has developed relationships with more than 500 local healthcare professionals in nearly 3 dozen healthcare organizations and is pursuing over a dozen initiatives to allow Compassion to be more of a driving force in our healthcare experiences.  

Second, the confluence of healthcare companies, universities, and interfaith groups all can serve as excellent partners and connection points for the guide, assist with distribution, and for hosting education efforts. Third, an internet search for terms related to end-of-life care (such as advance care planning, end-of-life planning, death and dying, etc.) yield little or no direct links to services (other than the local hospice), existing guides, or paid advertising. This gap would ease the risk of competition and create many opportunities for growth.

Finally, Louisville has a vibrant independent business association that hosts a Buy Local Guide, several annual events, and has a successful brand in the community. Although the Living Fully Guide would serve a different purpose, there might be potential for collaboration or use of existing networks that could expand the project's reach and growth. 


Who will benefit from this idea? [Updated 8-3-16]

The Living Fully Handbook would benefit patients and their caregivers, healthcare workers, plus the healthcare system and employers due to decreased healthcare expenditures.  Ideally the deployment of the guide would be as inclusive as possible, connecting with both the dominate culture and marginalized members of the community. Also, because some community members do not have access to the internet, the information would be available in both web and print based versions. Successful implementation could also benefit other communities by serving as a template. The Living Fully Guide would highlight how to disseminate important information in a respectful, useful, and measurable way.  Although slated as an "end-of-life planning guide," ideally, as the project matured, it would slowly pivot to engage communities to change their relationship to sickness, old age, dying and death.  

How could this idea be tested in a quick and low-cost way? [Updated 8-4-16]

The Living Fully Guide could be tested as a minimum viable product quickly and inexpensively by piloting it at the Before I Die Fest- Louisville in the fall 2016. The pilot guide would elicit feedback regarding messaging and ease of use; reliable surveys would be identified to measure changes in knowledge and behavior. Results regarding messaging and ease of use would influence initial pivots and format of both the print and web format; long term, funding would be secured and allocated to conduct focus groups to identify appropriate messaging. Knowledge and behavior changes would be followed over time, ideal intervals would be identified for follow-up surveys (for example in possible 3, 6, and 9 months intervals). 

Currently a working group is collecting information, resources, and support services for the guide.  Relationships are being developed with content experts in the fields mentioned by the IOM (medical, psycho, social, and spiritual, as well as legal, financial, educators, and burial, etc), as well as with related service providers. 

Once the prototyped guide is piloted, focus groups and a branding campaign will be used to establish it in the community. 


What kind of help would this project need? [Updated 8-4-16]

The project would need help in six main areas:

Messaging- what is the most appropriate language for effective engagement and behavior change? What measurable goals would be included in this behavior change from patients and care providers? What messages need to be considered to reach marginalized or non-native English speaking groups? How can the language be shifted to include end-of-life planning for all adults, not just those traditionally thought of as nearing death? 

Design- how can the web design and printing format ensure a product that is both functional and motivates users to action?

Measurement- what would be the appropriate metrics to measure how effective the guide is in changing behavior, connecting users with services, and improving provider connectivity? What would success look like? 

Scaling- how can the guide effectively reach nearly 1 million members of the Louisville community? Can the guide and community building process be used as template to be implemented in other communities?  

Sustainability- how does the guide maintain relevance and remain a financially viable project? 

Organization Structure- related to sustainability, what is the ideal organization structure (for profit vs nonprofit) to build a long term project to effectively change the end-of-life experience? 


Will this project go forward if it is not an Open IDEO finalist? [Updated 7-30-16]

Yes, this project will move forward in Louisville if it is not a finalist of the Open IDEO campaign, albeit it might exist at a reduced scale. Members of several local organizations have expressed interest in the value of the project and a relationship is being developed with a division of metro government dedicated to local innovation. Additional relationships are being developed with local healthcare organizations, professionals, and the local medical society to measure enthusiasm and possible collaboration. 

A local nonprofit, The Global Human Project, has offered to serve as a fiscal sponsor for financing received in regards to the handbook. An appointment has been set with the local Center For Nonprofit Excellence to learn more about the process of starting a separate nonprofit as the project moves forward. 

The Living Fully Guide would serve to improve the 'connectedness' of the death and dying experience for both the patient, their care givers, and the local system by offering them a template to help them plan for a "good death." Besides connecting to general information and local resources, it would also include connection to national organizations and insights for providers that might not be available in Louisville. This project is dependent on collaboration and connectedness. Additional ideas and insights are wellcome. The Living Fully Guide will be continuously updated to keep the community informed of the latest information, resources, and support available in Louisville. 


What early, lightweight experiment might you try out in your own community to find out if the idea will meet your expectations?

The Living Fully Guide could be tested as a minimum viable product quickly and inexpensively by piloting it at the Before I Die Fest- Louisville in the fall 2016. The pilot group could be surveyed regarding the guides messaging and ease of use; the pilot group could be measured for changes in knowledge and beliefs, then followed-up at a pre-determined times following exposure to measure changes in behavior.

What skills, input or guidance from the OpenIDEO community would be most helpful in building out or refining your idea?

-Connection to existing services in other communities
-Assistance with formatting and web design
-Ideas for implementation and delivery
-Evaluation

Tell us about your work experience:

I have worked in integrated healthcare for almost 20 years. I have directly served hospice patients as a volunteer for 5 years, served as chapter president of AMTA-KY, served on the hospice ethics committee, and hosted conversations about death and dying in Louisville, KY.

This idea emerged from

  • A group brainstorm

40 comments

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Photo of Alex
Team

It gave me an interesting study about how we should be designing something for the customers and how well they can utilize it to the fullest. I think this article can be of great help to all the business people.
www.babyloncitytours.com/

Photo of Bettina Fliegel
Team

Congrats Justin!  I was away and just came back to the world of internet access, and see that you are in the Top 10!   All the best as you continue to work on developing the project.
Bettina

Photo of Justin Magnuson
Team

Bettina,

Thank you for the well wishes. I hope you are well and continuing with your work!  Let's stay in touch. 

Best,

Justin

Photo of OpenIDEO IDEO
Team

Congrats on being a Top Idea, Justin! It's been absolutely inspiring to see how you've developed The Living Fully Guide to re-imagine the end-of-life experience for ourselves and our loved ones. What an amazing journey it has been. In the coming weeks, we'll be making an official announcement to celebrate you and the other Top Ideas of the End of Life Challenge.



In the meantime, we would love for you to share your story in the upcoming End of Life Impact Phase. The Impact Phase is a space where the OpenIDEO community can share updates on how our projects are progressing beyond the challenge. For reference, here's a template for writing an Impact phase story:http://ideo.pn/1U9DrSN Well done Justin!

Photo of Justin Magnuson, MA, LMT
Team

Thank you so much, this is very exciting! I'm looking forward to my call with Joanna and Shane, I will also start the Impact story tonight. 

Best,

Justin

Photo of Joanna Spoth
Team

Hi Justin! I wanted to quickly share some feedback we recently received from our sponsors and advisory panel: "Although there's quite a bit of information out there around death and dying, we couldn't point to an existing online set of resources for families that was unique to their local area. We also started thinking about how pieces of the guide could be tangible (e.g. here are the top 10 Netflix movies people in Louisville in a similiar situation to yours have loved). We're excited about the method in which the information would be collected for the guide. Could crowdsourcing play a role? We're curious who the "author" of the guide would be and the perspective they'd be coming with. Do you have thoughts on that? We're also wondering, as the idea builds momentum, if the title might too – and we see it already has! We're excited to see the titles continue to be more inspiring and interactive."

Look forward to seeing your idea evolve during this last week of the Refinement phase!

Photo of Justin Magnuson, MA, LMT
Team

Joanna,

I answered some of these questions to Shane below, should I include my answers in the body of the proposal? 

Thanks,

Justin

Photo of Justin Magnuson, MA, LMT
Team

@Joanna, also, I have some questions about the editing convention. Is the format that I'm dating my edits clear enough (note, it's been a few days since I've made an edit to the proposal. 

Photo of Paul Ennis
Team

Justin - I trust you've been well since we last spoke. I'd like to offer to be on your 'Team' if that is something you would like to include me in as your idea continues to move forward. I believe HDCR could provide increased visibility, public awareness, networking and cross-pollination to your efforts/ideas through the programs, website, YouTube channel, twitter feed, etc., that are being created at this time via Home Death Care Resources. Let me know your thoughts. Enjoy your day... - PWE

Photo of Justin Magnuson, MA, LMT
Team

Thanks for reaching out Paul, collaboration is key. If there are things that I can do that would be helpful let me know. 

Best,

Justin

Photo of Naiomi Lundman
Team

Hi Justin,
Impressed with the conversation happening here. I'd like to take the comment about an online version a step further. My perspective is influenced by 1) business background (i.e. sustainability)  and 2) recently supporting a family member through end of life stages.   

1. Market size or impact potential. Understanding that you're building a guide for your geographical location, there also may be value for other geographies - but perhaps through a template version of what you're creating. i.e. your 'product' can be replicated with ease by others. This gives potential for scale, sustainable revenue, and/or larger impact. The template version could be digital and perhaps more a form version that others could purchase, download (or upload content) and populate as you're doing. 

2. Bringing it online. I get that a paper version can be preferred (how much time do we really need to spend on computers/smartphones!?) and more friendly and comfortable to use with the elderly.  Yet, if you haven't already considered this, an "online support" version or tool may increase value and stakeholder engagement (involving caregivers, medical team, contracted service providers, for example) - in addition to the paper version.   Allow me to reference my experience. When my mom was "dying" over a period of years, her support team grew and the decisions needing to be made grew. And my mom (and my dad) actually did a lot of coordination on her ipad and phone. Emails, calls and notifications from and to care providers, as well as all the logistics stuff for end of life.  Your end of life roadmap made me wonder if the current process (my mom and us coordinating with many) could be reversed (many service providers coordinating through an online 'roadmap' with her). i.e. instead of static and heavy client effort, the online support option makes it interactive and less burdensome on the client. How might all these providers (and their e-systems link with the online roadmap) to stay coordinated and give the "client" a big picture look at what is to being done/to be done according to the roadmap she's plotted out? This may be too far reaching for what you've set out to do; however I hope it stimulates additional thought and refinement. 

Photo of Justin Magnuson, MA, LMT
Team

Naiomi,

Great feedback! I really hope you were able to get the support and care you needed for your mom. That's the big motivation for my idea. Regarding your comments:
1) ideally the guide could be transferable to any market. I'm in love with the idea of creating a procedure manual to include the roadmap, linking to service providers,  the technical pieces,  and sponsors then making the whole process open source or linked to a central website. 

2) Making the guide available in both formats is really important to me because I've heard it from multiple people,  but I agree that digital formats give you more options.

Connectivity of care is one of my passions for patient centered healthcare. Your idea is great, it would be quite beyond my technical expertise and I would have concerns about HIPPA requirements, but I think care providers should be in communication and it should be simple.  

I think either way the guide would need to be connected with multiple service providers,  including the local government,  and marketed through PSAs, community outreach, and education. 

If you think of other feedback or ideas please be in touch. 


Best, 

Justin

Photo of Bettina Fliegel
Team

Hi Justin and Naiomi.
Connectivitiy of care is an interesting issue to tackle.  I remember reading about an App developed as part of a design challenge for cities, by a group in Barcelona during the Inspiration Phase.  You might find it exciting and an inspiration as it incorporates that idea within it.  I love the idea!
From the website:  "Vinacles brings together and coordinates the support of friends, family members, neighbors, and professional care givers around at-risk seniors."

http://mayorschallenge.bloomberg.org/ideas/collaborative-care-networks-for-better-aging/

http://smartcity.bcn.cat/en/vincles-bcn.html

Photo of Justin Magnuson, MA, LMT
Team

Bettina,

Thanks for the link, I'll take a look!

Justin

Photo of OpenIDEO
Team

Welcome to the Refinement phase Justin! Here are some key questions and milestones we encourage all idea teams to consider in the Refinement phase:

1. How might this idea address the unique needs of the target audience you're designing for?
2. Clearly summarize the value offering of your idea in 1-2 sentences
3. Communicate your idea in a visual way with user experience maps http://ideo.pn/UX_Map
4. Identify assumptions that need to be answered in order to validate your value offering: http://bit.ly/1Oi8ZHu
5. Collect feedback from potential partners and users to answer the assumptions you’ve identified.

Lastly, here's a useful tip: When you update the content of your post, it'd be helpful to indicate this in your idea title by adding an extension. For example, you can add the extension " - Update: Experience Maps 07/12" to you idea title. This will be a good way to keep people informed about how your idea is progressing!

Photo of Shane Zhao
Team

Hi, Justin

Here are some feedback from our sponsors and panel of experts. Looking forward to how this idea will grow in Refinement!

Although there's quite a bit of information out there around death and dying, we couldn't point to an existing online set of resources for families that was unique to their local area. We also started thinking about how pieces of the guide could be tangible (e.g. here are the top 10 Netflix movies people in Louisville in a similar situation to yours have loved).

We're excited about the method in which the information would be collected for the guide. Could crowdsourcing play a role? We're curious who the "author" of the guide would be and the perspective they'd be coming with. Do you have thoughts on that? We're also wondering, as the idea building momentum, if the title might too. Let's brainstorm a few titles that might be a bit more inspiring or interactive!

Photo of Justin Magnuson, MA, LMT
Team

Shane,

Thank you for the encouragement and questions, here are my thoughts:
- Information collection, currently I have 8 people brainstorming to find information and services in Louisville. Services tend to be fairly silo'd, i.e. most practitioners I have spoke with only know a few other practitioners  and organizations like Metro United Way only has 5 services listed under "Death and Dying,  that isn't very comprehensive. An approach I've thought about is to find 'experts' in the areas identified by the IOM (medical, psycho, social, and spiritual, plus the areas of awareness, financial, legal, and burial not listed) to find practitioners who are considered to use 'best practices.' I'm not sure how to vet services or providers, it might not be necessary.
-Regarding authorship, I've thought about a panel approach. I'm on the ethics committee of our local hospice, that might be a good start, but I want representatives of the various stakeholders. Key perspectives in my mind; patient and family centered, supportive of the quadruple aim, and sensitive to the political landscape of the area (i.e. death with dignity would be a non-starter in many places). 
-I've been thinking about this, I'm trying to avoid cliches, but I'm wondering if trail guide or road map (this metaphor is suggested below) might work. 
    * "The Road Map to End-of-Life Planning in Louisville" it could play on the language of the CAPC Atlas of Palliative Care to provide an overview of EoL issues and then a road map for Louisville. 

Is that too cheesy? Help making is sexy would be appreciated. 

Thanks,

Justin

Photo of Justin Magnuson, MA, LMT
Team

Thank you, I'm working on clarifying my target audience and the user experience map. I have a meeting set up to prototype the idea.  Can you clarify where suggestion 2 would live?

Thanks,

Justin

Photo of Justin Magnuson, MA, LMT
Team

@Shane Zhao,  could you send me a link to the recorded questions from today's call?

Photo of Shane Zhao
Team

Hi Justin, there seemed to have been an issue with saving the recording. We mainly went over how to use the experience map template and how the tool can help ideas become more focused and human-centered. Did you have any specific questions? Let me know and I'll see if I can point you in the right direction!

Photo of Bettina Fliegel
Team

Great idea Justin!  I like this because it can potentially provide guidance and services across socioeconomic groups.  Do you plan to have versions in multiple languages depending on demographics?  
It would be great if you could provide the guide to those working within each area described in it, including all health care providers across systems.  They can use it themselves as a resource to refer patients.  As a primary care provider working in resource poor communities I have often struggled with getting care or services for patients/families.  This would be a great first step (for EOL care planning).  I like paper versions.  Great to have in a waiting area for people to browse, or even in the office while waiting etc.

Can you elaborate a bit on what you services would be included in Step #3 - Ritual, Body Disposition and Bereavement?  Will you be including legal services in Step 1 for people to be able to write wills?

I posted an Idea, "Poker and Planning Parties", as a suggestion on how to engage adults/seniors who are in resource poor, low socioeconomic communities who have not had access to planning guidance, bringing professionals to the seniors to start conversations, educate and provide services.  A guidebook like this would be great in any region.  Have you considered including an Action Plan or the paperwork that can be used to create a legal living will/ advanced directives?  I think availability and hard copies might make the difference.

Looking forward to watching you develop this!  Good luck to the working group in Louisville!

Photo of Justin Magnuson, MA, LMT
Team

Bettina,

Thank you for the encouragement and thoughtful suggestions. Currently I am involved with several organizations that serve the immigrant and refugee population in Louisville, so, I am aware of this need, but I need to strengthen these relationships to provide bilingual resources. I also want to collaborate with these communities because I realize there is much to learn about other cultural traditions. 

Regarding connecting with health and social services, I think you are absolutely right in suggesting that healthcare providers have access to the resource guide. Ideally it would be available in both a print and web format with  ongoing opportunities for service providers to meet and learn about each other's services.

I laid the steps out in a 1, 2, 3 fashion, but it could be set-up in any number of ways. I  envision Step 1 to include legal and financial planning. Step 3 could be any service for after a person dies, there might be a better description of what to do with a corpse, but body disposition sounded more polite than body disposal. A few services that could be offered might be:
-home funerals
-disposition options might include; cremation, aquamation, green burial, cremain spreading, etc. 

I love your idea for "Poker and Planning Parties," meeting people where they are and providing a novel way to engage the process is important. We considered hosting cocktail planning parties. If you have ideas or suggestions please be in touch, Justin@livingfullyky.com

Photo of Bettina Fliegel
Team

Hi Justin.  I checked out the "Living Fully Kentucky" website linked on your profile page and read about the Conversation Project.  It is great!  I think it would be a great way to present information at the Poker Parties and I linked it to that Idea, and I also linked your post there, in the "Update section."   Is that your website or do you host a page on it?

What types of financial options and advice do you plan to include in your guide?  I wonder about this for individuals who have less economic means.  Are there mechanisms to save as families, or communities for burial fees?  I have no knowledge around this topic other than I know that the cost of funerals/burials can be very high.   Wouldn't it be great to have a pre tax mechanism to save money, up to a set amount, to cover these fees as an incentive to save?  

Do you plan on sharing the costs of the different disposition options and also their environmental impact in the Guide?  At the NYC OpenIDEO Chapter Meet Up during the Inspiration phase an architect from Columbia came to give a short presentation on her work in the "Death Lab."  She shared information on environmental cost of different methods of body disposition.  Their work is very interesting.    Here is the post that the NYC OpenIDEO Chapter put up in the Inspiration Phase.  The "Death Lab" website is linked in the post.
https://challenges.openideo.com/challenge/end-of-life/research/how-we-live-with-death-in-the-city

Photo of Justin Magnuson, MA, LMT
Team

I own the domain name LivingFullyKY.com, but currently link it to the Global Human Project website that they manage/host. I am currently exploring revenue ideas to develop my own organization or business, but since the GHP has their non-profit status and I really like their mission I will probably stay housed as one of their projects for the time being. 

The guide will probably just link to services and resources in the community for the time being. Although it would make sense to offer a format for providers to submit content and possibly bundle services.  Burial is very expensive, one rational to plan in advance is to weigh the various options. There is a Potter's field in Louisville, which I think is a valuable service, but I think it really serves the indigent population. 

We are currently planning a week of end-of-life planning activities for the fall. One of the ideas is to provide interactions with the funeral homes in town, I'm sensitive to their needing to make a living, it would be nice for some transparency though about various options and the relative cost. For example, in KY, you do not have to be embalmed to be transported or buried, but you do in Indiana.  This is an est added cost of $400-$1,200 according to locality and provider that is necessary in some states and not others. 

I am a big fan of sharing as much information as possible about the various disposition options. I'll check out the "Death Lab' post, that's very interesting. Thanks for the follow up. JM

Photo of Bettina Fliegel
Team

Hi Justin.
It is interesting to hear that laws vary from state to state in terms of body preparation and funerary practices.  In the Jewish tradition bodies are not embalmed.  It is against doctrine to embalm.  Burial is to be within the same day, if possible.  (The only reason to wait is if close family must travel to get to the burial.)  Bodies are buried in simple wooden caskets, and sometimes only in a shroud.  They are in a simple linen shroud.  (Everyone the same.)  It is essentially a green burial.   (I am interested to hear that in Indiana embalming is mandatory.   Are Jewish burials an exception there?  Muslim burials are very similar to Jewish.  I don't think they embalm either.  Why would it be mandatory for one group and not another?)

On another note - talking about "end of life planning" - the words are not inviting from my point of view.  I wonder if more people would become involved just by changing what we call these activities?  

Photo of Justin Magnuson, MA, LMT
Team

Actually,  now that you mention it I might have overstated the case about embalming.  There are rules about embalming and burial vaults,  in at least some cemeteries,  but confusion,  at least on my part, regarding green burial and home funerals. At least part of my idea for a resource guide is to clear up confusion,  I realize how quickly I run out of my leash. 

Advance care planning isn't a horrible name,  I also like it because it doesn't seem like old age is pre-rec. The Conversation Project used the hashtag #WhatMattersMost when Being Mortal first aired an Frontline,  that seemed to engage people. 

You bring up very good points.  Thanks for keeping the dialogue alive. 

Photo of Bettina Fliegel
Team

Actually I like Advanced Care Planning, it is the End of Life Planning phrase that I don't find as something that would bring me to "the party" perhaps.  I like the What Matters Most as it implies values.  And I agree totally that it is important to engage everyone, and the earlier the better, not just seniors.   I think my focus on seniors with Poker and Planning, although targeting a particular demographic in a certain space/time is a good idea, it has it's limits for the same reason.  I really like your cocktail party idea.  It has the potential to be multigenerational which is something I always find interesting.   I always learn so much from these OpenIDEO challenges!  
Enjoy your Sunday and thanks for the conversation!

Photo of Bettina Fliegel
Team

Congrats Justin!  Great that your resource guide idea is in Refinement!

Thinking about Eric's comment below and Joanna Spoth 's link to Lennon Flowers 's great Idea I wonder if a resource guide can also help people anticipate needs.  It struck me when reading Lennon's post that people did not always know what to ask.  This is so true when facing experiences one has never had to face before.  Although a Louisville guide might not have helped Eric access local resources in Georgia, I wonder if hearing/reading about what worked for others along their process, how they "navigated",  what questions they learned to ask and from whom, might have helped?  Maybe the guide also has a "roadmap" component?  Just a thought.....   Does that make sense?

Photo of Lennon Flowers
Team

Thanks, Bettina! And hi there, Justin! Suffice it to say: We love this idea. Strikes me that some elements of the guide are universal, whether you're in Louisville or the Golden Isles of Georgia or Oakland, CA: Helping people to understand what their options are, and to master all the vocabulary out there (hospice vs palliative care, home funerals vs green burials vs cremation, and their various intersections), as well as nationally-active orgs. And then there are those that are place-specific: Which care-providers and services come recommended, and to what end?

I could imagine a collaborative working group creating the backbone, with a structure through which local orgs could then fill in the portions that are specific to their own communities, using Louisville as the prototype.

 For a subject as intimate as this, we've found that the critical thing is to lead with real stories of real people, ensuring that you've captured enough diversity so that every reader can see themselves reflected in the pages. You want it to feel friendly and accessible, avoiding anything that feels institutional or like the "yellow pages" for EOL. We're biased, but obviously love the idea of organizing a dinner series to help surface those stories (in partnership, for ex, with the orgs you mentioned serving local immigrant and refugee populations). We've got an active table in Louisville, and are happy to help however we can. Email: lennon@thedinnerparty.org

Photo of Justin Magnuson, MA, LMT
Team

Thank you so much for the follow up and congrats, sorry for the slow response, I've been playing catch up from vacation. I like the road map metaphor, that was my intention with my idea of three phases, but I used your language because it makes sense and might help someone see it in a different way. I'm Skyping with Paul tomorrow, maybe we could connect sometime soon and find ways to collaborate?

Best,

Justin

Photo of Justin Magnuson, MA, LMT
Team

Lennon,

I'm going to follow up with an email. 

Best,

Justin

Photo of Torrie Fields
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Hi, Justin!!

There's a group in Oregon who put one of these out as well (departing decisions). I'm coming from a business standpoint, and the guides were difficult to use in paper form. One thing I contained in Oregon was to make an online repository with a governance structure (so there was an approval process). This is not only lucrative  for individuals but also for the care managers trying to look for resources for patients. You have absolutely no idea how essential a guide like this is for the gathering of resources for these individuals... Google is great, but it's not reliable. 

Photo of Justin Magnuson, MA, LMT
Team

Torrie, 

Wow, that's a great website.  I've been looking at http://www.caringcommunity.org/ in CA, it seems very similar. I really like the layout and content of the DD site.  I am a big fan of web based material, but the feedback I've gotten from participants is that some older adults need a physical copy. 

I absolutely agree that Google is great, but it only seems to be reliable if you are savvy, having both the time and resourcefulness to search for information. Neither of which is helpful if a person is in crisis. 

Best,

Justin

Photo of Joanna Spoth
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Hi Justin! Great to see you keeping the idea alive here and am loving your back and forth with Bettina Fliegel . I wanted to point you to Lennon's post about The Dinner Party's aspirations. I think there could be some really neat learnings there! https://challenges.openideo.com/challenge/end-of-life/ideas/living-well-after-loss-listening-tour/ 

Photo of Justin Magnuson, MA, LMT
Team

Joanna, 

Thanks for the feedback. I'm sorry I missed this and am just now responding. I'll take a look at Lennon's idea. 

Justin

Photo of Justin Magnuson, MA, LMT
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Actually, I see that I've visited her page and oddly I commented before, but it seems to have disappeared. 

Photo of Paul Ennis
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Justin - Excellent post/idea. If you are looking for linkages that are worthwhile to include as your guidebook comes into being I've recently discovered the 'National Home Funeral Alliance' here:  http://homefuneralalliance.org/

They've got many, many valuable resources available for review in relation to the 'Home Death' arena.

I've also just posted my 'Idea' submission for this next round of activity on the OpenIDEO platform.

You can visit my latest offering here:  http://pwe.me/28ZR0cl

Your feedback would be welcomed.

Enjoy your day...

Paul Ennis

Photo of Justin Magnuson, MA, LMT
Team

Paul, 

Thanks for the resources and feedback.  I'm going on a long car ride today,  if I don't get to check out your idea today,  I hope I can still comment when the submission phase ends tomorrow. 

Best, 

Justin

Photo of Eric Snyder
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I write this comment from quite a different perspective.  From the perspective of a Canadian actively managing the final year of life of a 95 year old American cousin, a widow living on St. Simons Island, Georgia.   I was her primary caregiver, located 1200 miles away in another country.  A local death and dying resource manual for the Golden Isles area of Georgia would have been a Godsend for me.  It was always a time consuming struggle trying to find the resources and services she needed on her final journey.

/e

Photo of Justin Magnuson, MA, LMT
Team

Eric,

It is confirming to hear that my idea would be useful and regrettable something similar doesn't already exist. When I was my grandmother's health surrogate I was much less familiar with the system and struggled immensely. It pains me that families suffer what is in my mind a very easy solution.

I hope that if I'm ever honored to be responsible for someone else's health decisions/care again I am better prepared and have a good system to rely on. If you think of a way I can help or you have specific suggestions to improve my idea please don't hesitate to reach out.

Sincerely,

Justin