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.