Innovations in End-of-Life Care
an international journal of leaders in end-of-life care

The Carolinas Center for Hospice and End of Life Care has been working to improve care at the end of life for more than 25 years. Originally established as a statewide hospice association, The Center provides technical assistance, education, and advocacy to hospices in North and South Carolina. In 1999, through a three-year grant from The Robert Wood Johnson Foundation and additional resources from The Duke Endowment, The Center created and implemented a two-state plan to improve end-of-life care in the Carolinas. Focus groups conducted across North Carolina, and South Carolina state surveys in 1999 and 2001, gave us a starting point.

Based on the results we received from our initial focus groups and surveys, we learned that the majority of people in the Carolinas, regardless of ethnic or social background, did not want to talk about their wishes for care at the end of life—or they did want to talk but lacked the appropriate words. The Center developed and implemented a public engagement campaign called Isn’t It Time We Talk? to reach caregivers and consumers with education about planning for care at the end of life.

A major component of this campaign focused on advance care planning (ACP) and linked together both a professional education initiative and a consumer education initiative. For the professional education initiative, we sponsored Gundersen Lutheran Medical Center’s Respecting Choices Advance Care Planning Instructor Certification Program in February 2001. We trained 50 instructors from North and South Carolina, all of whom passed a certification exam. Each instructor was charged with setting up two ACP facilitator trainings per year. In the two years since, these instructors have provided 76 Respecting Choices ACP facilitator trainings and trained more than 1,100 health care professionals and community leaders. Participants in the ACP trainings included hospital and hospice physicians, nurses, social workers, and chaplains, as well as AARP volunteers, Family Caregiver Resource Specialists, local extension agents, and other community leaders. The facilitators are trained to provide individual/family consulting on advance care planning, to offer educational programs within their community or organization, and to work within their organizational system to provide advance care planning.

To assess the impact of our training efforts, The Carolinas Center conducted a follow-up survey of the ACP facilitators in North Carolina one year after the initial instructor training. Of the 53 respondents, 85 percent had talked with family and friends regarding advance care planning, 82 percent had completed their advance directive documents, and 82 percent had helped patients/clients in a professional capacity. This sample group of only 53 facilitators had already helped 349 patients/clients with advance care planning.

To reach even more deeply into health care systems and local communities, The Carolinas Center is sponsoring additional Respecting Choices classes in March 2003: a second Instructor Certification Training, and for hospital teams, ACP Facilitation Skills for Special Patient Populations. The Center continues to provide technical assistance and support to instructors and facilitators, including training materials, tracking forms, newsletters, newspaper articles, flyers, letters of support, and follow-up meetings.

For its consumer education initiative, The Center created and distributes Isn’t It Time We Talk? ACP educational materials. These have included an introductory brochure, a discussion guide to assist family conversations, a planning guide/workbook, and a wallet card to record the location of advance directives. More than 60,000 brochures and discussion guides, and 31,000 planning guide/workbooks have been sold and distributed during the last 18 months by local end-of-life care coalitions, ACP instructors and facilitators, hospitals and hospices, key state partners, civic organizations, and churches, and at health fairs, community events, and town meetings. One local end-of-life care coalition has collaborated successfully with two major medical centers to co-sponsor distribution of the planning guide.

These local partnerships have been key communication points in reaching the public. In addition to offering educational materials to consumers, they have sponsored public forums and ACP facilitator trainings, and organized, sponsored, and/or promoted conferences and health fairs.

At the state level in North Carolina, key partnerships have led to system and policy changes. These include the creation of a registry for advance health care directives (that began operating on May 1, 2002), and establishing a process for "out of facility" Do Not Resuscitate orders. Work on the advance directive registry led to an opportunity to collaborate with North Carolina’s organ procurement organizations and the Health Law Section of the North Carolina State Bar to promote National Health Care Decisions Week, sponsored by the American Bar Association and supported by the American Medical Association.

The Carolinas Center is also working with a special task force of the Elder Law Section of the North Carolina Bar Association to review the advance directive statutes and make revision suggestions to the North Carolina General Assembly. At the first meeting, in November 2002, the task force developed a survey for attorneys and health care professionals in order to assess the issues concerning advance directives. The policy data on North Carolina advance directives from the 2002 Last Acts’ Means to a Better End report was very helpful in gaining consensus from the group to proceed with this task. After the results from the survey are complete, The Center will work with NC-AARP and other state partners to advocate for the necessary changes in the advance directive statutes.

Through the ACP instructors and facilitators, and local and state partnerships, The Center has developed an infrastructure to reach the consumer level and truly begin to change the culture of end of life care. For more information, contact The Carolinas Center for Hospice and End of Life Care at (800) 662-8859 or visit www.carolinasendoflifecare.org.

—Gwynn B. Sullivan RN, MSN

[Go to New Hampshire Partnership for End-of-Life Care]
[Go to Update on Respecting Choices]