| | Respecting Choices®
 An Advance Care Planning Program Different Than the Rest
“The goals of advance care planning can only be achieved by changing institutional and professional routines. What must be created is an innovative system for advance care planning within healthcare.”
- Bud Hammes, PhD, Director, Respecting Choices
Respecting Choices is focused on professional training and organizational change.
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.
In this program, success is characterized for each health organization, and the professionals working in them, in terms of developing and maintaining new routines of care. The routines can be described as a list of Five Promises:
We will:
Initiate conversations about advance care planning with all adults who need to plan.
Skillfully facilitate planning with each individual.
Make sure all advance care plans are clear to all involved and specific to each person.
Make sure that plans are available when needed.
Follow plans in a thoughtful and respectful way.
References:
- Prendergast, T.J. (2001). Advance care planning: Pitfalls, progress, promise. Crit Care Med., 29 (suppl.), N34-N39.
- Lynn, J., Nolan, K., Kabcenell, A., Weissman, D., Milne, C., Berwick, D.M. (2002). Reforming care for persons near the end of life: The promise of quality improvement. Ann Intern Med., 137, 117-122.
Discussions of advance care planning in Innovations in End-of-Life Care. See 1 (1) (Jan-Feb 1999): 5(2) (March-April 2003), 5(3) (May-June 2003), An on-line peer reviewed journal available at http://www.edc.org/lastacts
Program Flexibility
Respecting Choices¨ isn’t a “one size fits all.” As each organization develops its own advance care planning system, it will have its own set of unique needs. We recognize this, and have created training and educational materials that can be customized for your success.
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, and 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.1
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 New Hampshire, as well as in North Carolina and South Carolina. 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. References are available upon request.
1 Hammes BJ, Rooney BL, Death and end-of-life planning in one midwestern community. Arch Intern Med 1998: 158:383-390
Why an Effective System of Advance Care Planning is 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:
Ensure clinical care consistent with patient preferences when capacity is lost.
Improve decision-making process.
- Facilitate shared decision-making process.
- Allow proxy to speak on behalf of patient.
- Respond with flexibility.
- Provide education.
Improve patient’s well-being by reducing frequency of over or under treatment.
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. |