PRIMARY FOCUS ON ADVANCE CARE PLANNING
The Coalition has had two primary areas of focus—ACP and palliative care. Between those two, the majority of the Coalition's activities have focused on ACP. The reason is that no one profession or health care institution has taken responsibility for ACP. Physicians find themselves interpreting advance directives (ADs), but often have no role in completing them. Hospitals have an obligation to ask about ADs, but no responsibility to encourage their
completion. Attorneys, emergency responders, and others have a piece of ACP, but not the whole picture.
In addition, often the time between execution and implementation of an AD is multiple years. Thus, the provider who helps a patient complete an AD is not the one who reaps the benefit of it. Moreover, while medical knowledge is helpful to ACP, quality planning also requires consideration of the patient's psychological, emotional, social, and spiritual values and beliefs. This causes many health care providers to view ACP as “taking too much time.” For all these reasons, ACP was ripe for being the focus of a collaborative approach.
Coalitions can be very powerful. At the same time, they are very fragile. A successful coalition requires two things: (a) everyone needs to feel that they are heard and (b) they need to see progress. So it's a combination of process and outcome. Both process and outcome are needed; otherwise, you risk losing participants because they don't feel ownership of the coalition's efforts or they lose interest in an effort that appears to be going nowhere.
Ownership is particularly important. This is where the magic happens. When all participants feel that they own the efforts, outcomes, and successes of the coalition, they look for opportunities to promote the coalition and further its efforts. This is when synergy starts to happen. Connections are made. Impacts are bigger and further reaching.
When it comes to ACP, we firmly believe that it is a process that happens over time, not a one-time event. Conversation is the foundation. Really good conversations—among loved ones and between patients and their health care providers—can prevent the majority of controversies and challenges. For healthy people, naming the person you want to speak for you and discussing your goals and values with them is a critical step. This can be documented in an AD. For people with advancing illness, frailty, or chronic conditions, discussing what medical treatment you want based on your diagnosis and prognosis is beneficial. This can be documented in a Physician Orders for Life-Sustaining Treatment (POLST) form.
The traditional approach to education, that is, lecture, has been shown to have limited impact in creating change. The Coalition strives to incorporate adult learning principles into all of our educational efforts, including interactive exercises, real-life case examples, and personalized application. Being clear on the goal of the educational effort can be helpful. Sometimes, the goal is to impart a particular attitude, transfer knowledge, develop skills, establish behaviors, or bring about institutional change.
In the following section, I focus on the Coalition's work that has been most fundamental to our impact on ACP practices in the state of California.
From the beginning, public engagement was a core part of our work because it was required by our grant. Given the size of California, we needed a strategy that enabled us to reach groups of people throughout the state. Working one-on-one with individual consumers was not realistic.
We structured our public engagement work based on the following assumptions:
■ ACP can begin in non–health care settings.
■ Interactive small group discussion can be an effective format for stimulating reflection and discussion about EOL issues.
■ Organizations and community members can be equipped, through a variety of tools, to plan and implement ACP activities on a largely volunteer basis consistent with their time, resources, and interests.
■ With common tools and activities to link them, multiple organizations can form effective, locally based coalitions to bring attention to EOL issues.
Thus, we decided to focus on promoting ACP activities in community settings, rather than medical or individual settings. We targeted settings where people were already naturally gathering, such as churches, senior centers, and assisted living facilities.
We used a number of tools to encourage and assist consumers in engaging in ACP, including:
■ A booklet to assist consumers in talking with their loved ones about their treatment wishes.
■ A series of articles on EOL issues that could be published in local newsletters or church bulletins.
■ An AD fact sheet.
Several of these materials were culturally and/or linguistically translated into Spanish or Chinese.
An important component of our work was development of a discussion guide for lay leaders, Talking It Over. The guide provides a program and exercises for three sessions to give people ideas for thinking and talking about their wishes at EOL. Some people were comfortable using the discussion guide after reading it. Others felt they needed training before they would feel confident in leading a discussion. So we developed a companion training to compliment the guide. The guide was translated into Spanish and Tagalog.
As we did this work, we started connecting with a number of local community-based coalitions with similar missions. We soon realized that these
local coalitions would benefit from networking with each other. We invited local coalition leaders to join our public engagement workgroup. These meetings allowed local coalitions to share information about their activities, what worked, and any lessons learned. Those coalitions that were in driving distance or had travel support attended in person. Others attended by conference call. The Bill Moyers series On Our Own Terms prompted the creation of many local coalitions after its broadcast in 2000. At the height of activity, 23 local coalitions existed in California. Today, about half a dozen of those local coalitions continue to exist.
After our original grant ended, we were unable to secure significant funding for public engagement activities. Due to our reliance on grants, our focus moved away from continued formal public engagement.