Advance Care Planning and Public Engagement. A. Coalitions/Advocacy Organizations’ Attempts to Address Advance Care Planning

10/01/2007

Over the course of the last ten years, state and local community-based coalitions from more than two dozen states sponsored a variety of initiatives to promote advance care planning, primarily devoted to consumers.65 Education was focused on encouraging completion of advance care planning documents in compliance with existing state statutes. A few initiatives reported activities aimed at updating legislation or reforms that allowed for a combination of advance health care directives and proxy appointments, but the overwhelming majority of coalitions focused their work on simply getting consumers to complete forms that had been adopted by legislatures during the two previous decades. Reported “success” measures in most instances were identified as numbers of forms distributed or resource materials requested by consumers in public forums, over the phone, or downloaded online.

Their numbers were collectively impressive. The combined request estimates reported by nonprofit groups that sponsored publications and tools to facilitate discussion or promote completion of documents ranged in the millions in the period immediately surrounding Terri Schiavo’s death. This was the only time in which some organizations actually tallied their distribution totals. Participating groups included the National Hospice and Palliative Care Organization66 (Caring Connections® LIVE campaign), Aging with Dignity67 (Five Wishes®), the Center for Practical Bioethics68(Caring Conversations®) and Sacramento Health Care Decisions69 (Finding Your WayTM).

In addition, public entities such as states’ Office of Attorneys General (e.g., Missouri, Oklahoma, Maryland and Rhode Island) and Departments on Aging (e.g., Tennessee) have been involved in ongoing advance care planning promotions during the past decade. The states’ Attorneys General efforts were supported in large measure by the National Association of Attorneys General,70 which formally sponsored a multi-year project on end-of-life health care during 2003 and 2004. More recently, state public health officials have begun efforts to promote advance care planning as well. For the first time in its history, the Centers for Disease Control (CDC) identified “communicating wishes about end of life” in its 2007 Call to Action, elevating the issue to one of CDC’s current health priorities.71

Only time will provide a true measure of how those activities benefited health care consumers. Previous efforts to assess actual completion rates of consumer requested documents, point to disappointingly low numbers, ranging from single digits to approximately 25 percent.72 However, consumers’ familiarity with the terms “living will,” “advance directive” and “durable power of attorney for health care,” has increased over time.73

More recently, a number of successful statewide efforts to establish specific “health care decisions” days or weeks such as those sponsored by groups in Arizona, California, and Virginia have led to discussions about an effort to adopt a national movement. In May 2007 representatives from nearly two dozen organizations from across the country met via web-hosted simulcast and dial-in conference in Washington, Chicago, and Los Angeles to begin discussions.74

Institutional sponsorship has also played an important role in organizational involvement and systemic approaches to promote advance care planning such as that developed by Gunderson Lutheran Medical Center (Respecting Choices®).75 The American Bar Association has devoted concerted efforts to educating both the professionals and consumers through tool kit promotion.76

One community coalition in San Jose, California, the Coda Alliance, took a more innovative approach to advance care planning promotion through the development of the “Go Wish” Card GameTM, modeled after a popular children’s game. The game, designed for both solitaire and multiple players entertains, yet the players are required to think and talk about treatment options and values important in end-of-life decision making.77

A number of public and proprietary registries have gained popularity within recent years. This listing compiled in mid-2007 includes both proprietary and public/non-profit sources. Data on the number of persons who register are unavailable or unreported by the host sites.

  • The U.S. Living Will Registry available at http://uslivingwillregistry.com/ is a commercial registry (free) for consumers living in areas where registered partners sponsor listings.
  • LifeLedger is a proprietary health care organization offering secured online storage of personal medical information managed by family (caregivers). Includes advance care planning information retrievable via password. Available at http://www.elderissues.com/index.cfm.
  • Parting Wishes is a privately held company in Ontario, Canada formed in 2000, available at http://www.partingwishes.com/.
  • My Health Directive is a privately owned company (Healthcare Directive Partners LLC) offering storage and retrieval services available at http://www.myhealthdirective.com/index.jsp.
  • DocuBank is a service of Advance Choice, Inc., providing electronic document storage and emergency access to health care documents on a subscription basis. Available at http://www.docubank.com/advance_choice/advance_choice.asp.
  • America Living Will Registry is available at http://www.alwr.com.
  • FullCircle Registry is available at http://www.fullcircleregistry.com.
  • GIFTS Advance Directive Registry of Gateway Files Systems Inc. is available at http://www.giftsdirectives.com/Articles_pps/Giftsbooklet.pdf.
  • MedicAlert Foundation is available at http://www.medicalert.com/Main/AdvanceDirectives.aspx.

It is difficult to assess the true impact of social marketing efforts devoted to advance care planning during this time frame. Most statewide and community-based end-of-life coalitions reported advance care planning as one of many efforts they supported to improve end-of-life care. Many reported moderate success using measures they had developed, but many others used incidental or process measures rather than true outcomes. Given that no federal funding to support general public education in this particular area took place during this period, a nearly doubling of the numbers of Americans reported to have completed documents may be credible evidence of success. The fact remains however, that only about 30 percent of adult Americans now have documents in place.

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