History

The La Crosse Experience

In 1991, leaders of the major health organizations in La Crosse, Wisconsin collaborated on the development and testing of an improved model of end-of-life planning and decision making. The program was unique because it used an integrated systems approach that not only depended on printed material and videos to educate the community, but also provided the personal assistance of trained staff. This approach was then integrated as the routine standard of care through consistently applied policies and practices.

Realizing that all aspects of end-of-life care needed to be thoroughly and systematically addressed, the La Crosse program also sought support for the project from all community and healthcare leaders and professionals.

After two years of full implementation of the education intervention and system change, the La Crosse project appeared to have had a significant impact on end-of-life planning and decision making. Of the 540 adult deaths in the La Crosse community studied from April 1995 until March 1996, advance directives had been written by 85 percent of those who died. Of those documents, 96 percent were found in their medical records. Treatment preferences expressed in advance directives seemed to be known by family and physician, and were typically followed.

The lessons and skills learned from the La Crosse experience have been developed into a comprehensive curriculum that has become known as Gundersen Lutheran’s Respecting Choices Organization & Community Advance Care Planning Course.

Respecting Choices is now being implemented statewide in Kansas, Ohio, New Hampshire, North Carolina, South Carolina, and Wisconsin. Additionally, initiatives have begun in over 30 other communities or organizations across the country.  In August 2002, Respecting Choices was presented for the first time in Heidelberg, Australia where it has since become the model for end-of-life care in all of Australia.
References are available upon request.

Hammes BJ, Rooney BL, Death and end-of-life planning in one midwestern community. Arch Intern Med 1998: 158:383-390

Overview

Why Effective Systems are Essential to Improving End-of-Life Care

For many organizations, the vision of advance care planning remains too narrowly focused on increasing the completion of documents, establishing an electronic storage system, or providing more consumer education. This narrow vision will not begin to address the planning needs for millions of Americans who desire to have a “good death.”

How and where people die in the United States has changed greatly over the last 30 years due to dramatic developments in medical science and technology. The ways in which these innovations have been socially organized and financed have created a need to make choices about how, when, and where a person dies.

As life expectancy has increased, so too have the multiple complications associated with chronic illnesses in the last years of life. Often the patient is unable to participate in decision making when it may be most important. It has become essential that plans be made in advance to guide future decisions about efforts to prolong life. Yet, nothing in our past experience and culture has fully prepared us for these often complex and stressful choices.

Joan Teno has described the goals of advance care planning to encompass the following:

1. Ensure clinical care consistent with patient preferences when capacity is lost.
2. Improve decision-making process.

o Facilitate shared decision-making process.
o Allow proxy to speak on behalf of patient.
o Respond with flexibility.
o Provide education.

3. Improve patient’s well-being by reducing frequency of over or under treatment.
4. Reduce patient’s concern regarding possible burden placed on family and others.

(Teno, JM et al Hastings Center Report 24:S32-6, 1994)

These goals will not be accomplished without a commitment to changing the systems of care delivery and without changing the routine of care. Respecting Choices has developed the components of a systems approach that includes: 1) community engagement, 2) professional education, and 3) organization/ community standards of practice. Addressing only one of these components will leave gaps in a system, as many organizations and communities have discovered. Addressing all will have a clear impact on improving care at the end of life.

While many groups have developed advance directive materials or documents, Respecting Choices¨ has taken a more comprehensive, systematic approach. In this program, the focus is on developing a system of training, practices, and policies so that effective advance care planning and end-of-life decision making becomes the routine - the expected care - throughout a health organization or a community.