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III Implementing Advance Care Planning: Model Programs

Introduction

Leah Rogne

It is clear that just giving individuals the legal right to make choices about end-of-life (EOL) care has not been enough to shift how we deal with dying, death, and care. As health care providers and communities have had more experience with advance directives (ADs) and with individuals who find the whole process of dealing with EOL daunting and confusing, many communities have developed focused programs to provide public education about death and dying and to provide user-friendly tools for advance care planning (ACP). Drawing on lessons learned from the disappointing results of the SUPPORT Study (The SUPPORT Principal Investigators, 1995) and other efforts to promote ADs, model programs have moved from a formsfocused approach to a broader ACP approach, taking care to provide community awareness programs, support systems, and a variety of resources to help individuals understand their options, explore their choices, and (perhaps most important) learn how to communicate with their families, friends, and health care providers about their values and desires about how they would like to live until they die.

This part features four model programs that have drawn on research, the experience of others, and their own experience to develop effective advance planning initiatives. Research and experience have led them to develop strategies for dealing with common barriers for the public, for health care providers, and for meeting the needs of special populations. All of these programs emphasize the central role of communication in ACP
and provide resources to support people to lift the veil of silence around issues related to death and dying, and help community members communicate effectively about their wishes about their care during EOL. Two programs are statewide coalitions, and two are model local/regional initiatives. (See Chapter 22 in this volume for other programs and resources focused on ACP and EOL care.)

In Chapter 15 Linda A. Briggs, associate director of the acclaimed initiative Respecting Choices® at the Gundersen Clinic of LaCrosse, Wisconsin, outlines how the Respecting Choices three-step model of ACP addresses some of the key barriers to effective planning for EOL care. Focusing on the importance of understanding, reflection, and discussion among practitioners, patients, and family members and the facilitation of conversations appropriate for patients in various stages of wellness and/or illness, Respecting Choices has succeeded in transforming its community to the extent that by 1996, 85% of decedents had ADs and, more important, 98% of patients' wishes were honored at EOL. Briggs discusses how Respecting Choices has been replicated in other communities and emphasizes the importance of effective training of facilitators, organizational commitment, and the infusion of conversations about EOL throughout the community as well as within health care institutions.

Chapter 16 features a statewide initiative, the Take Charge Partnership of Pennsylvania. Partnership founders Margaret L. Stubbs, Jolene Formaini, Cynthia Pearson, and Dena Jean Sutermaster describe the development of the partnership, which got its start in the late 1990s as a part of community awareness and action project associated with the Public Broadcasting Service's television series on death and dying, On Our Own Terms: Moyers on Dying. The authors describe how the all-volunteer partnership has provided community outreach and resources to foster action that makes a difference in how individuals, families, and communities deal with EOL issues. Actions have included a series of 26 regional forums to discuss the television series and to lay the groundwork for local action, the development of an online resource bank, and a series of public service announcements. The partnership has developed a robust web-based education system that provides short videos (free of charge) and online discussion guides on ACP, the reality of caregiving, hospice and palliative care, and managing pain. An especially innovative approach has been a web resource called “Empower Others.” This tool is directed toward a variety of individuals who interact with the public, such as members of religious and community organizations, barbers and hairdressers, health care workers, tax preparers, employers, counselors and therapists, educators, and trainers and coaches. It communicates the idea that you don't have to be an expert to talk about EOL matters and provides these community members with resources to initiate important conversations when appropriate. Stubbs and her colleagues provide helpful tips on how to build what they call a “proactive, agentic” grassroots organization on a shoestring budget and how to prioritize outreach efforts that can make an immediate difference in the community.

In Chapter 17, Judy Citko, executive director of the Coalition for Compassionate Care of California, outlines key successes of the statewide group. The Coalition's groundbreaking initiatives on EOL care in nursing homes succeeded in developing a system to reduce unnecessary nursing home-to-hospital transfers at EOL and showcased promising practices to provide high quality care in nursing homes for those nearing EOL. Citko describes how the Coalition's workgroup created a guide to EOL nursing home care that is explicitly tied to federal nursing home regulations as a way of gaining adoption of and legitimacy for the recommended new way of dealing with EOL in a long-term care facility. Citko also outlines the Coalition's work to promote the use of Physicians Orders for Life-Sustaining Treatment (POLST) as a way to deal with some of the shortcomings of traditional ADs, and discusses its efforts to create a system that empowers persons with developmental disabilities to direct their EOL care. Finally, she describes the Coalition's work to create a process that assures that EOL conversations take into account the variety of cultural and spiritual beliefs that prevail in our increasingly multi-cultural society.

Finally, in Chapter 18, project implementation coordinator Cari Borenko Hoffman outlines the ACP initiatives of Fraser Health Authority in British Columbia, Canada. By creating engaging education programs for the public and for practitioners, and by working with a network of other organizations in the province and throughout Canada on education, outreach, and policy, Fraser Health has fostered effective conversations about EOL care among patients, families, and providers, resulting in a dramatic increase in the proportion of people in its service region having ACP documents. Fraser Health drew on the Gundersen Clinic's Respecting Choices® model and put a particular emphasis on involving physicians in planning and feedback to increase physician attention to the goals of ACP for their patients and families.

REFERENCE

The SUPPORT Principal Investigators. (1995). A controlled trial to improve care for seriously ill hospitalized patients: The study to understand prognoses and preferences for outcomes and risks of treatments (SUPPORT). Journal of the American Medical Association, 274, 1591–1598.

 
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