The Coalition for Compassionate Care of California
Care toward the end of life (EOL) is deeply entwined with culture. This was the stunning conclusion of SUPPORT (Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatment) (1995) (The SUPPORT Principal Investigators, 1995), a 10-year multi-million dollar study designed to improve EOL decision making and reduce the frequency of a painful and prolonged dying process. The results of the SUPPORT study stunned the health care community because the carefully designed interventions were shown to have had virtually no impact on the patient experience.
One of the most insightful explanations of SUPPORT pointed to the realization that our experiences at the EOL are connected to culture (see Lynn, Arkes, et al., 2000; Lynn, De Vries, et al., 2000). Culture is the broad concept that encompasses the knowledge, beliefs, behavior, values, goals, and practices shared by a group of people, a field of study, an individual institution, or all of humanity. Often, we're not aware of the culture in which we operate because it feels so natural. At the EOL, our experiences are connected to the culture of individual providers at the bedside, the health care institutions in which they work, our health care system at large, and society in general.
That's why a coalition is well suited for changing care practices and patient experiences at the EOL. A coalition can bring together a broad range of individuals and organizations to bring to light that which is unseen, co-create a vision of a better future, and ultimately change cultural norms. The Coalition for Compassionate Care of California (CCCC) exists for these reasons. The Coalition exists to work on multiple levels simultaneously—including working on the level of professionals, institutions, public policymakers, and consumers—to change the culture of death and dying.
This chapter provides a brief background on the Coalition's history, achievements, and lessons learned. It is an example of what can be achieved through collaboration. We hope that it will inspire you to go out and create change in your sphere of influence.
The Coalition for Compassionate Care grew out of a community-based project in Sacramento, California conducted by the Center for Healthcare Decisions (CHCD). In the mid-1990s, CHCD engaged more than 1,000 individuals in a series of public discussions about EOL care. These discussions occurred in two clusters—discussions among clinical staff from a variety of disciplines and discussions in community settings among local citizens. This endeavor sparked local hospitals to make tangible changes in their policies and processes for caring for seriously ill patients.
The success of CHCD's work led to the 1997 convening of a statewide group of health care professionals, long-term care associations, state agencies, and consumers to propose ways to improve EOL care for residents of California's nursing homes. Early on, it became clear that in order to influence nursing homes, the task force needed to be a statewide body. This group produced the ECHO Recommendations, discussed below. As the task force was finishing up its work, the Robert Wood Johnson Foundation (RWJF) announced its Community–State Partnership Initiative, which was designed to establish and support statewide efforts to improve EOL care. The California Hospital Association volunteered to be the lead agency on the grant and the grant was funded. So in 1998, the task force turned into the Coalition for Compassionate Care.
The Coalition established a Steering Committee to provide guidance on implementation. We asked the various statewide trade associations representing health care providers—including physicians, hospitals, nursing homes, hospice, and others—to join the Steering Committee. We sought out the participation of key state agencies—including agencies with oversight of medicine, health care, and aging. We invited consumer advocates and representatives to participate. Individual folks who were passionate about improving care toward the EOL also joined us at the table.
The Steering Committee formed three workgroups, one to oversee each aspect of our original grant. The Steering Committee and the workgroups—public engagement, skilled nursing facilities, and professional
education—met three times a year to provide input and advice on the Coalition's activities.
Over the years, the Coalition's relationship with the hospital association evolved. The Coalition started out as a project of the hospital association, which allowed us to focus on grant activities rather than day-to-day business operations. Over time, the Coalition took on more and more responsibility for fully supporting and funding itself. In 2010, the Coalition became separately incorporated.
The Coalition started out with an executive director at 20% time and a half-time administrative assistant. We have grown to a mix of six fulltime and part-time staff. Much of our work has been accomplished through other organizations or individuals that we use as independent contractors to help us achieve certain objectives.
Originally, the Coalition was led by an executive committee, comprised of two cochairs of the organization and the chair of each of the workgroups. That evolved into an advisory board, which evolved into a governing board when the Coalition became separately incorporated.
Eventually, the steering committee and workgroup structure became stale. After 10 years, instead of hosting tri-annual steering committee meetings, we switched to a single, annual membership meeting and conference. We also traded standing workgroups for specific-purpose, time-limited advisory groups and task forces. We implemented a dues-paying membership structure.
The Coalition exists through philanthropic support, namely grants and donations. To date, most of our funding has been from grants. While we are eternally grateful for the grant funding we have received, the challenge with grant funding is that it limits an organization to activities that a grant funder believes is important. Just because we see a need, just because our members ask us to do something, doesn't mean we can secure the resources to do work on that issue.
Throughout the Coalition's existence, our hallmark has been collaboration. For people who want to make bigger changes than they can do on their own, the Coalition is the way to make that happen.