The Portland and Arizona examples help illustrate different approaches to getting started.  Portland held an initial community convening to generate awareness, gain alignment on critical issues, and gain commitment for involvement. The Arizona effort was initiated by a vital funder who helped bring key stakeholders together. Each of the efforts relied on a small group of people to get things started and to provide the leadership to help it gain momentum.

Once the groups come together, they may take different paths in determining their strategic focus. In Portland, the focus areas - public education, care delivery, and policy advocacy - became more evident as a result of the roundtable discussions. All efforts relied on a small group of people, who helped strategically guide the undertaking, and help it gain momentum. In both Louisville and Arizona, the organizers had a clear idea of where they would like to focus from the outset.

Portland and Cambia

As active members of C-TAC, Cambia Health CEO, Mark Ganz, and Peggy Maguire, President of the Cambia Health Foundation, believe that Oregon could benefit from the formation of a Serious Illness Care Coalition. They were willing to help initiate the effort and took the first step by bringing together stakeholders from a variety of organizations. Their goal was to create a shared knowledge about palliative and hospice care, gain feedback on the idea of collaboration, and confirm the willingness of others to participate.

In doing this, stakeholders were invited to attend a screening of “End Game,” a 40-minute documentary that weaves together stories about individuals and families facing serious illness. A networking reception and roundtable dinner, where Mark and Peggy shared their vision of bringing organizations together, to improve care for those with serious illness followed the screening. Those in attendance were then asked to share what they thought of the idea, and if they were, they willing to be part of the effort. Organizations, including AARP Oregon, all voiced their support for the idea and expressed their willingness to be involved. The next day, a small group gathered at Cambia Health to debrief the stakeholder meeting and draft a vision statement, principles, and strategic focus. These will be examined in an upcoming chapter.

Arizona End of Life Partnership²⁴

The Arizona EOLCP began as a small community coalition comprised of passionate people from community non-profit organizations. The coalition received an initial $10K Convening grant from the David and Lura Lovell Foundation for community stakeholders to address Strengths, Opportunities, Aspirations, and Results/Resources for end of life in Tucson. The convening led to a $30K Planning Grant and a $3 Million Grant to ten organizations to lay the groundwork for the creation of the Arizona End of Life Care Partnership (Az EOLCP). Nine of the ten grantee organizations are in Pima County/Tucson and one, the Arizona Hospital and Healthcare Association.

The United Way of Tucson and Southern Arizona (UWTSA) was designated as the backbone organization and Senior Director, Sarah Super Ascher leads the effort on their behalf. The initiative includes the following members:

• Arizona Hospital and Healthcare Association
• Interfaith Community Services
• Southwest Folklife Alliance
• Tu Nidito
• Tucson Medical Center Foundation
• The University of Arizona Center on Aging
• United Way of Tucson and Southern Arizona
• Casa de Luz Foundation
• The Tohono O’odham Nursing Care Authority Foundation
• Pima County Council on Aging

The partnership has sought to develop and implement a broad-based collaboration with a shared vision. This shared vision calls for all individuals to have excellent healthcare at all points in their life transitions; to die with dignity, meaning, and respect. The shared vision further calls out our communities and health systems to meet those expectations. As a result of its membership, the partnership offers a community hub for a network of services and resources; human-centered community education, advocacy, and support; healthcare provider education and support; caregiver workforce development; workplace initiatives; public policy advocacy, statewide leadership and global models for community collaboration

Portland and Cambia

Cambia Health held a meeting with organizations in the community interested in advanced illness care, caregiving, palliative care, and hospice. Those in attendance were excited about working together to focus on these items. Based on their feedback, a smaller group drafted a vision statement for others in the community to review. Their draft vision is:

All Oregonians with serious illness receive comprehensive, high-quality, person- and family-centered care that is consistent with their goals and values and honors their dignity.

Several things are worth noting in the vision statement. First, the vision describes the group of people who will be affected. Second, it represents a future state that the group hopes to achieve. Finally, it provides a detailed description of the future state.

Arizona End of Life Partnership²⁵

The End of Life Partnership seeks to develop and implement a broad-based collaboration with a shared vision. This shared vision calls for all individuals to have excellent healthcare at all points in their life transitions; to die with dignity, meaning, and respect. The shared vision further calls out our communities and health systems to meet those expectations.

The partnership offers:

• A Community hub for a network of services and resources
• Human-centered community education, advocacy, and support
• Healthcare provider education and support
• Caregiver workforce development
• Workplace initiatives
• Public policy advocacy
• Statewide leadership
• Global models for community collaboration

Massachusetts Coalition for Serious Illness Care ^{26, 27, 28}

The Massachusetts Coalition for Serious Illness Care has effectively used digital tools to share their message. They have adopted a portfolio approach that allows them to use a variety of outlets to maintain energy up and drive involvement. Their website has played a central role in their efforts. It has several components that have been used to help them grow to their current 103 members. These include a research tab that provides access to surveys that the Coalition conducted in 2016, 2017 and 2018, and a news/events tab providing summaries of the summits and examples of media coverage of the coalition. 

In addition to the website, the coalition uses a variety of communication means with members about current activities and opportunities for engagement. Of the social media channels, the Coalition uses Twitter exclusively. The group also hosts two meetings each year are a dynamic way of connecting with and updating members. The sessions generate considerable enthusiasm and energy.

The coalition uses Constant Contact to disseminate email updates and an e-newsletter. A key component of each newsletter is a feature article highlighting the work of a member organization. Members appreciate the coverage and the interaction involved in preparing the stories.

Massachusetts Coalition for Serious Illness Care: Communicating Impact

• 2018 Summit, including videos
• 2017 Summit, including videos
• 2017 Meeting Photo Collage
• 2018 Research

A sample of media coverage is available here.

Their Annual Summit, the largest of the meetings, attracts 300-400 people. It is intended to energize the movement by providing a place where people who share a passion for a serious illness can gather and connect with their colleagues. The event also features marquee speakers who share updates and insights from the latest research. The Coalition also hosts a smaller fall meeting that draws 60-70 attendees. Its purpose is very different. At this more intimate session, participants share ideas about goals and strategy, often using design thinking methods. This meeting is used not only for input but also as a means to reinforce why individuals should be involved. The coalition also occasionally convenes task forces focused on specific initiatives. Participants are typically active members who have particular expertise to share. These types of convenings help make participants feel part of the group’s leadership.

Arizona End of Life Partnership²⁹

The Arizona End of Life Partnership has also effectively used digital channels to share their message. Their website has several components that have also been useful in growing their effort. The first tab on their website focuses on the vision, values, and purpose of the partnership and even includes investment opportunities.

The site also provides useful resources from the Partnership and its members. Another notable feature of their website is a focus on inspiring stories which contain videos, articles, and websites as well as an opportunity for people to share their stories. They also have a survey they are fielding about advanced care plans. The current website represents phase one of website design. Plans include navigation through resources in the community with a goal of the site being a hub for all resources.

While their effort is still young, the Arizona End of Life Partnership has focused three of their six pillars on outreach and impact. These include community-based education, community outreach, and healthcare provider education. Their community-based education efforts include scheduled community workshops, train the trainer sessions, and coaching. Their community outreach efforts include a helpline, info line, and calendar as well as conferences and presentations. Their healthcare provider education is focused on Professional Development.

What Matters: Caring Conversations About End of Life³⁰ 

What Matters: Caring Conversations About End of Life has sought to create a community that is guided by Jewish values and embraces advance care planning as a natural part of life. Where the end of life decision is known, respected, and honored.

The initiative is a collaboration between the Marlene Meyerson Jewish Community Center in Manhattan, The New Jewish Home, and the Center for Pastoral Education at the Jewish Theological Seminary. It builds upon Respecting Choices, and its success can be attributed to their ability to start small but think big. To share best practices, they hold regular meetings between the site leaders who share best practices, facilitate support sessions, and engage the community.

Under the leadership of Sally Kaplan, What Matters aims to accomplish three things. First, it seeks to heighten awareness about the importance of completing advance care directives. Second, it enables individuals to consider and document their end of life preferences thoughtfully. Third, it engages Jewish values as part of the process.

Unlike other programs, What Matters has trained sites and allowed them to build on their own culture and organization. As a result, trained and certified facilitators walk individuals through the process and encourage them to discuss their wishes with family members, loved ones, and physicians. It is spiritual, relational, and emotional.

During its 4-year existence, the initiative has grown from five sites initially to nine program sites with a goal of fifteen. The current sites include six synagogues, one community center, one communal organization, and a nursing home. They represent three different denominations and other theological approaches.

Honoring Choices Pacific Northwest³¹

Honoring Choices Pacific Northwest is a collaboration between the Washington State Hospital Association and the Washington State Medical Association. This collaboration has sought to inspire adults of all ages to create their end-of-life care plans and connect people to the tools they need to get started.

The Washington State Hospital Association is a membership organization representing community hospitals and several health-related organizations. The Washington State Medical Association is a professional organization that represents physicians, physician assistants, residents, fellows, and medical students throughout the state. Together they have provided resources to guide people through sharing those plans with their loved ones and with their health care professionals. They have also gathered professionals together from various organizations across the region to promote advance care planning through increasing awareness, knowledge, and resources. Their program consists of has five components – advanced care planning, community engagement, professional development, advocacy, and a central repository.

Organizations participating in the Honoring Choices Pacific Northwest Program offer facilitated advance care planning conversations to patients based on the Respecting Choices® First Steps® model. Included in this program are certified facilitators who speak with people of all ages and stages of health regarding concerns about end-of-life care. These facilitated discussions define how to identify a healthcare agent, someone the person believes is willing and trustworthy to make medical choices if he or she is unable. Most importantly, when religious and cultural beliefs are revealed, attendees often leave these discussion forums with advance directives completed.

Arizona End of Life Partnership³²

As the United Way of Tucson and Southern Arizona and the Arizona End of Life Partnership has begun their work, they have identified a series of benefits and learnings from their plan of action. A shared mission, vision, and values that have been adopted by key community stakeholders and cross-sector organizations involved in the work has helped create trust amongst the partners. Having a well-respected organization like the United Way serve as the backbone has helped them better connect the different facets of their work and increases visibility both inside and outside of the Partnership. The organizations and leaders involved have adopted systems thinking which has helped them look at problems differently and to be open to unexpected opportunities for expansion. They also allow themselves to think big, which requires them to start with why and then listen; think creatively and challenge assumptions. The pillars they created to guide the work have helped create connection and show overlap between the work of their action groups and decrease duplication.

The End of Life Partnership is aligning their 6 Pillars shown below to Action Groups that consist of members across Partnership organizations.

The approach has led them to create products that have benefited both Partners and the community at large. From the outset, they have collected and shared data between the organizations that have helped lead to quality outcomes and continuous improvement.

Sarah Ascher and the partner organizations have also encountered challenges which have also led to significant learning. There remains a need to break down silos and help change the mental model for change for partnership organizations. There is also a need to adopt a more significant community mental model to achieve the Partnership mission.

Massachusetts Serious Illness Coalition³³

More than 100 Massachusetts-based organizations have come together to form the Massachusetts Coalition for Serious Illness Care. Working at these groups are dedicated physicians, nurses, hospice workers, counselors, clergy, hospital, and health plan administrators, social workers, attorneys, policymakers, researchers, and other health professionals. Ultimately, people need to be at the center of discussions with family and others concerning all aspects of their care. The coalition’s mission is to ensure healthcare for the people of Massachusetts is aligned with the goals, values, and preferences at all stages of life and care.

The Coalition held its third annual summit on May 15, 2018, at the John F. Kennedy Library in Boston. The day featured a discussion with Jonathan Bush about the experiences of serious illness and end-of-life-care with his aunt, Barbara Bush and his uncle, George H.W. Bush.

Also included was a presentation of the coalition’s 2018 consumer research, as well as an in-depth panel discussion on lessons that can be learned from significant public health and social change success stories.