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Service Delivery Innovation Profile

Community-Wide Education, Trained Facilitators, and Improved Processes Lead to More Advance Care Planning, Consistency Between Plans and End-of-Life Decisions, and Low Care Costs


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Snapshot

Summary

Respecting Choices is a comprehensive, community-wide program, created and led largely by health organizations and State and local medical societies; its mission is to engage patients and their families in informed conversations about advance care planning and to improve the systems and processes used to collect and store advance care planning decisions in patients' medical records. The program provides standardized, locally developed patient education materials to patients across all health care settings in the community; trains nonphysician facilitators to guide patients and their families in advance care planning; and implements common policies and practices for collecting, maintaining, retrieving, and using advance care planning documents across settings. The program increased completion of documentation of advance care plans, achieved a high degree of consistency between patients' desires and actual care decisions made at the end of life, and is associated with low care costs during the last 2 years of life.

Evidence Rating (What is this?)

Moderate: The evidence consists of pre- and post-implementation comparisons of the percentage of dying adult patients with an advance care directive in La Crosse; a post-implementation review of patient charts to determine the degree to which patient wishes were honored at the end of life; post-implementation data on care costs in the last 2 years of life (compared with the national average); and a pilot study and randomized controlled trial evaluating the level of congruence between patients and providers and patients and surrogate decision makers with respect to understanding end-of-life treatment preferences in groups using the program's facilitator skills training and control groups not using the training.
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Developing Organizations

Gundersen Health System; Mayo Clinic Health System: Franciscan Healthcare
Franciscan Healthcare was formerly known as Franciscan Skemp Healthcare, and Gundersen Health System was formerly known as Gundersen Lutheran Health System.end do

Use By Other Organizations

Respecting Choices leaders have developed the La Crosse model into a comprehensive advance care planning curriculum available for sale across the country and internationally. The model is currently being implemented statewide in New Hampshire, North Carolina, South Carolina, and Wisconsin, with other initiatives having been launched in more than 40 other communities and organizations across the country. Information provided in December 2013 indicates that Kaiser Permanente of Northern California is rolling out all three stages of Respecting Choices planning to its 26 regions. The approach has also been implemented in Canada and Singapore, and is being tested in Spain and Germany, and serves as the model for end-of-life care in Australia.

The Australian implementation of the model, called Respecting Patient Choices, has modified the original program to ensure that the language, educational materials, and proposed system changes are applicable to the Australian health care system. A randomized controlled trial of patients participating in the Australian implementation found that program participants were more likely to have their end-of-life wishes known and followed than were members of a control group. Family members of program participants who died experienced significantly less stress, anxiety, and depression than those of control group members. Patient and family member satisfaction was also higher among program participants.12

Date First Implemented

1991
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Patient Population

Respecting Choices works with all patients with advanced or serious illness.Vulnerable Populations > Terminally illend pp

Problem Addressed

Seriously ill patients often cannot express their wishes due to mental or physical incapacitation, leading to health care decisions that may be inconsistent with personal preferences. Although advance care planning—a shared decisionmaking process about future health care choices—can help, many patients fail to engage in such planning. For those that do, advance care plans are often not followed.
  • Many hospital deaths, but few advance care plans: Nearly 80 percent of Americans die in health care settings,1 many after long battles with chronic, life-threatening illnesses. Although many dying individuals are incapacitated and thus cannot participate in health care decisions, only approximately 20 to 30 percent of Americans have completed an advance care plan that makes their wishes for end-of-life care known.2
  • Multiple barriers to planning: Many patients report feeling uninformed about end-of-life care options, and/or believe that legalistic advance directive documents are too confusing and leave little room for discussion of personal beliefs and values.3 Health care providers also report barriers to advance care planning, including the lack of appropriate skills and adequate time to engage in the planning process with patients.4,5
  • Failure to comply with plans in place: Even when advance care plans have been completed, physicians may not be aware that the patient has a plan on file, or may be unable to follow the plan due to vague or ambiguous content or incomplete documentation.6,7

What They Did

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Description of the Innovative Activity

Respecting Choices is a comprehensive, community-wide program, created and led largely by health organizations and State and local medical societies; its mission is to engage patients and their families in informed conversations about advance care planning and to improve the systems and processes used to collect and store advance care planning decisions in patients' medical records. The program provides standardized, locally developed patient education materials to patients across all health care settings in the community; trains nonphysician facilitators to guide patients and their families in advance care planning; and implements common policies and practices for collecting, maintaining, retrieving, and using advance care planning documents across settings. Key program elements include the following:
  • Locally developed patient education materials: Patients in all health care settings across La Crosse, WI, (including the city's two large integrated systems) receive a locally developed, standardized set of patient education materials. Program leaders and area providers also distribute the materials throughout the community at presentations, health fairs, and other events. The materials include a card with basic information on advance care planning (also given to all hospital patients upon admission), a 12-page booklet covering advance care plans in more detail, and a 4-page planning guide that helps patients and families initiate conversations about end-of-life decisions.
  • Trained nonphysician facilitators: Trained health professionals and other volunteers, including nurses, social workers, chaplains, and community members, serve as nonphysician facilitators. These facilitators help to engage patients and their family members in informed conversations about advance care planning. Patients can access these facilitators across all health care organizations in La Crosse, including the integrated systems, hospice programs, home health programs, nursing homes, and community hospitals. For example, patients receiving care at Gundersen’s cancer center receive facilitation services from hospital social workers, while other inpatients typically receive facilitation services from the pastoral care team. Facilitators focus on helping patients who are older or who have been diagnosed with a serious progressive illness. They typically meet with patients and their families for more than 1 hour, helping them explore options for advance care planning. Facilitators elicit and explore patients' goals, values, and beliefs to create a discussion with the patient and their family, helping to connect those goals to end-of-life care decisions. Although the focus is on conversation rather than documentation, facilitators also assist each patient in recording his or her wishes in an advance care plan, which can then be entered into the patient’s medical record. To make the facilitation process more effective, the process has been divided into three stages of planning, serving three patient populations, as described below. By creating these stages of planning, it becomes possible to prompt both health professionals and patients to know when to move to the next stage of planning so that plans are updated and reflective of the patient's worsening health condition. It also becomes possible to train health professionals to engage in these stages of planning so they are done consistently and competently. The facilitators keep the patient's physician informed of the process so that decisions are a shared process between patient and physician.
    • "First Steps": Basic, First Steps advance care planning is focused on all healthy adults, with the aim of completing this stage of planning before age 65. In this early stage, the goal is to legally appoint a well-chosen surrogate to serve as power of attorney for health care and determine when a severe, permanent brain injury would be serious enough that the goals of care should change from prolonging life to allowing death to occur.
    • "Next Steps": The Next Steps advance care planning occurs when a person of any age is suffering from a progressive, chronic illness and begins to have serious complications (e.g. repeated hospitalizations). This planning is focused on considering when a bad outcome of treatment may change the goals of care from attempting to prolong life to allowing death to occur. In this stage, the issue is not foregoing treatment, but a consideration of when treatment would be considered a failure for the patient.
    • "Last Steps": The Last Steps advance care planning occurs when clinicians "would not be surprised" if the patient died within the next 12 months. In this stage, the individual has end-stage illness. At this point, the goal of planning is to develop a detailed plan expressed as medical orders and recorded on a standardized order sheet called the Physician Orders for Life-Sustaining Treatment.
  • Common policies and practices for managing planning documents: The program developed common policies and practices for using and storing advance care plans across health settings in the community. Although individual organizations have different electronic medical records and/or procedures for inputting advance care planning information into patients’ charts, all settings follow a standardized set of guiding principles that help them to gather the same key pieces of information, review them for accuracy and thoroughness, and record them for easy retrieval and, if necessary, transfer between facilities. Initially, health care facilities used a paper system, with all information regarding a patient’s advance care planning and education being kept in an easily visible green paper sleeve affixed to the patient’s chart. Because most health care settings no longer rely on paper records, facilities now record the same information in each patient’s electronic medical record, following a set of standardized guidelines so that advance care decisions are easily retrievable across settings.

Context of the Innovation

Located in La Crosse, WI, Gundersen Health System is an integrated health care network providing primary and specialty care through a multispecialty group practice (one of the Nation's largest), regional community clinics, hospitals, home care, behavioral health services, vision centers, pharmacies, and air and ground ambulances. In 1986, Dr. Hammes began to notice a pattern involving Gundersen patients on dialysis, many of whom had suffered serious neurologic injuries from which they would not likely recover. Family members of these patients often did not know what end-of-life choices their loved one wanted. After a review of charts and the medical literature found that many dialysis patients do not decide to stop treatment on their own, Dr. Hammes approached Gundersen’s Ethics Committee about starting a program to engage patients and their families in advance care planning.

Did It Work?

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Results

The program increased completion and documentation of advance care plans, achieved a high degree of consistency between patients' desires and actual care decisions made at the end of life, and led to low care costs during the last 2 years of life. Studies show that the use of standardized facilitator skills training from the program leads to increased understanding of advance care planning and patient preferences by patients, providers, and surrogate decisionmakers.
  • More advance care plans: Before program implementation, a random telephone survey of 304 adults in La Crosse found that only 15 percent had completed an advance care plan. Several years after program implementation, a 1998 community-wide study found that 85 percent of the 540 adults who died in participating health care settings in La Crosse had advance care plans. In 96 percent of these cases, the advance care plan could be found in the patient’s medical record.1 A similar study conducted in 2008 showed an even greater prevalence of advance care plans, with 90 percent of deceased adults having plans in place and 99 percent of these plans being in the patient's medical record at the time of death.8
  • Vast majority of patient wishes honored: The 2008 review of decedent medical records in all settings of care found that in more than 99 percent of cases, care decisions made at the end of life were consistent with the patients' wishes as expressed in the advance care directive.
  • Enhanced understanding of patient preferences: In both a pilot study and a larger, randomized controlled trial, groups that used facilitator skills training from Respecting Choices (see Planning and Development Section for more details) demonstrated greater congruence between patients and providers and between patients and surrogate decisionmakers in terms of understanding patient goals and preferences for end-of-life treatment than did control groups not using such training.9,10
  • Low care costs at end of life: At Gundersen, the average care costs for a patient in the last 2 years of life is approximately $18,000, well below the national average of nearly $26,000. Some hospitals spend as much as $50,000 to $75,000.11

Evidence Rating (What is this?)

Moderate: The evidence consists of pre- and post-implementation comparisons of the percentage of dying adult patients with an advance care directive in La Crosse; a post-implementation review of patient charts to determine the degree to which patient wishes were honored at the end of life; post-implementation data on care costs in the last 2 years of life (compared with the national average); and a pilot study and randomized controlled trial evaluating the level of congruence between patients and providers and patients and surrogate decision makers with respect to understanding end-of-life treatment preferences in groups using the program's facilitator skills training and control groups not using the training.

How They Did It

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Planning and Development Process

Key steps in the planning and development process included the following:
  • Implementing pilot program: From 1986 to 1991, Gundersen ran an advance care planning pilot program for dialysis patients, called If I Only Knew. The program used existing hospital staff to educate patients and their families on the advance care planning process, helping them to initiate conversations and document their decisions. After 2 years, the pilot increased the rate of advance care planning among dialysis patients from 2 percent to 46 percent.
  • Building support for community-wide launch: Project leaders used the success of the pilot to build support among area health care administrators and physicians for a community-wide advance care planning initiative. A respected, well-known nephrologist from the pilot helped to build commitment across health care settings within the community.
  • Assembling task force: Stakeholders from a variety of health care organizations across La Crosse formed an advance care task force, which met regularly to plan the core components of the program.
  • Developing materials and establishing common processes: Task force members developed a standardized set of patient education materials to distribute throughout the community, establishing a unifying logo and theme to aid in the delivery of a clear, consistent message regarding advance care planning. The task force also worked to outline core policies and processes for gathering and storing patients’ advance care plans, so that patients’ end-of-life decisions could be easily understood across various health care settings, regardless of any differences in individual facilities’ electronic or paper medical records.
  • Training facilitators: Each facilitator receives 16 hours of standardized training, including an 8-hour online and 8-hour classroom component. The online component teaches basic advance care planning concepts, while the classroom component focuses on building communication skills and general knowledge of the advance care planning systems in place in the community. When the program first started, the training program was offered three to four times each year, with 25 to 30 participants per session. Training between 30 and 40 people yearly is sufficient for maintaining the program at this point, so the training is currently offered twice each year.

Resources Used and Skills Needed

  • Staffing: The program employs a director and assistant director, along with an unspecified number of staff across health care settings in La Crosse who participate in the program as a part of their regular job responsibilities. Within Gundersen Health System alone, 90 to 100 active nonphysicians serve as facilitators as part of their regular duties.
  • Costs: Implementation costs are estimated at $500,000 over a 2-year period. Ongoing costs are spread out among participating settings, with no set operating budget for the program.
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Funding Sources

Mayo Clinic Health System: Franciscan Healthcare; Gundersen Health System
Each institution, including nursing homes, pays for the training of their own facilitators, materials, and time spent assisting patients and families.end fs

Adoption Considerations

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Getting Started with This Innovation

  • Secure administrative support: Success requires strong and sustained support from senior leaders across the community, who must be willing to stand behind and advocate for the concept.
  • Secure upfront commitment to human and financial resources: Administrators pledging their support must be prepared to commit both finances and staff to the program. Without that initial commitment, it will be difficult to move forward from the planning to implementation phase.
  • Be proactive about systems issues: Think creatively about how to incorporate advance care plans into existing information systems. Such plans will be of little use if they cannot be easily retrieved from the medical records.

Sustaining This Innovation

  • Emphasize standardization: Standardizing patient education materials and facilitator training throughout the community helps to ensure that patients receive cohesive, fluid advance care planning services, regardless of where they receive care.
  • Be patient: A community-wide initiative can take years to roll out and achieve results. Project leaders should be patient and strategically grow the program over time.
  • Seek sustainable funding: Unlike one-time grants, sustainable funding sources help to institutionalize program components, thus securing a long-term future for the initiative.

Use By Other Organizations

Respecting Choices leaders have developed the La Crosse model into a comprehensive advance care planning curriculum available for sale across the country and internationally. The model is currently being implemented statewide in New Hampshire, North Carolina, South Carolina, and Wisconsin, with other initiatives having been launched in more than 40 other communities and organizations across the country. Information provided in December 2013 indicates that Kaiser Permanente of Northern California is rolling out all three stages of Respecting Choices planning to its 26 regions. The approach has also been implemented in Canada and Singapore, and is being tested in Spain and Germany, and serves as the model for end-of-life care in Australia.

The Australian implementation of the model, called Respecting Patient Choices, has modified the original program to ensure that the language, educational materials, and proposed system changes are applicable to the Australian health care system. A randomized controlled trial of patients participating in the Australian implementation found that program participants were more likely to have their end-of-life wishes known and followed than were members of a control group. Family members of program participants who died experienced significantly less stress, anxiety, and depression than those of control group members. Patient and family member satisfaction was also higher among program participants.12

Additional Considerations

The program has prompted the creation of two collaborative projects: Honoring Choices Minnesota, led by the Twin Cities Medical Society in Minneapolis/St. Paul, and Honoring Choices Wisconsin, led by the Wisconsin State Medical Society. Sixteen health systems, Minnesota Public Television, and the Citizens League are involved in the Minnesota project. The goal of Honoring Choices Minnesota is to develop a consistent, standardized, effective approach to advance care planning modeled on Respecting Choices for a metropolitan region. More information about Honoring Choices Minnesota is available at: http://www.honoringchoices.org/. Honoring Choices Wisconsin is committed to implementing the Respecting Choices First Steps program throughout the state of Wisconsin; more information is available at: https://www.wisconsinmedicalsociety.org/professional/hcw/. (Updated December 2013.)

More Information

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Contact the Innovator

Bud Hammes, PhD
Director of Medical Humanities
Gundersen Medical Foundation
C03-006A
1836 South Avenue
La Crosse, WI 54601
(608) 775-2412
E-mail: bjhammes@gundluth.org

Innovator Disclosures

Dr. Hammes has not indicated whether he has financial interests or business/professional affiliations relevant to the work described in this profile; however, information on funders is available in the Funding Sources section.

References/Related Articles

Hammes BJ, ed. Having Your Own Say: Getting the Right Care When It Matters Most.  La Crosse, WI: Gundersen Medical Foundation; 2012. Available at: http://www.gundersenhealth.org/respecting-choices/having-your-own-say.

The Respecting Choices Web site is available at: http://www.gundersenhealth.org/respecting-choices.

Hammes BJ, Rooney BL, Gundrum JD. A comparative, retrospective, observational study of the prevalence, availability, and specificity of advance care plans in a county that implemented an advance care planning microsystem. J Am Geriatr Soc. 2010;58(7):1249-55. [PubMed]

Detering KM, Hancock AD, Reade MC, et al. The impact of advance care planning on end of life care in elderly patients: randomised controlled trial. BMJ. 2010;340:c1345. [PubMed]

Shapiro J. Why this Wisconsin city is the best place to die. National Public Radio. November 16, 2009. Available at: http://www.npr.org/templates/story/story.php?storyId=120346411.

Prendergast TJ. Advance care planning: pitfalls, progress, promise. Crit Care Med. 2001;29(2 Suppl):N34-9. [PubMed]

Hammes B, Romer AL. The lessons from Respecting Your Choices: an interview with Bernard Hammes. Innovations in End-of-Life Care, 1999;1(1). Available at: http://www2.edc.org/lastacts/archives/archivesJan99/featureinn.asp.

Schwartz CE, Wheeler HB, Hammes B, et al. Early intervention in planning end-of-life care with ambulatory geriatric patients: Results of a pilot trial. Arch Intern Med 2002;162:1611–1618. [PubMed]

Hammes BJ, Rooney RL, Gundrum JD, et al. The POLST program: a retrospective review of the demographics of use and outcomes in one community where advance directives are prevalent. J of Pall Med. 2012;15:77-85. [PubMed]

Hammes BJ, Briggs L. Respecting Choices: Building a Systems Approach to Advance Care Planning. 2012. Gundersen Medical Foundation. Available at: https://glrespectingchoices.dcopy.net/product/rc001-r-building-a-system-approach-to-acp-manual.

Footnotes

1 Hammes BJ, Rooney BL. Death and end-of-life planning in one midwestern community. Arch Intern Med. 1998 Feb 23;158(4):383-90. [PubMed]
2 Hickman SE, Hammes BJ, Moss AH, et al. Hope for the future: achieving the original intent of advance directives. In: Improving End of Life Care: Why Has It Been So Difficult? Hastings Center Report Special Report 35, no. 6 (2005):S26-S30. Available at: http://www.thehastingscenter.org/Publications/SpecialReports/Detail.aspx?id=1344.
3 Schickedanz AD, Schillinger D, Landefeld CS, et al. A clinical framework for improving the advance care planning process: start with patients' self-identified barriers. J Am Geriatr Soc. 2009;57(1):31-9. [PubMed]
4 Scherer Y, Jezewski MA, Graves B, et al. Advance directives and end-of-life decision making: survey of critical care nurses' knowledge, attitude, and experience. Crit Care Nurse. 2006;26(4):30-40. [PubMed]
5 Gorman TE, Ahern SP, Wiseman J, et al. Residents' end-of-life decision making with adult hospitalized patients: a review of the literature. Acad Med. 2005;80(7):622-33. [PubMed]
6 Fagerlin A, Schneider CE. Enough. The failure of the living will. Hastings Center Report. 2004;34(2):30-42. [PubMed] Available at: http://www.thehastingscenter.org/pdf/publications/hcr_mar_apr_2004_enough.pdf (If you don't have the software to open this PDF, download free Adobe Acrobat ReaderĀ® software External Web Site Policy.)
7 Tonelli MR. Pulling the plug on living wills. A critical analysis of advance directives. Chest. 1996;110(3):816-22. [PubMed]
8 Hammes BJ, Rooney BL, Gundrum JD. A comparative, retrospective, observational study of the prevalence, availability, and specificity of advance care plans in a county that implemented an advance care planning microsystem. J Am Geriatr Soc. 2010;58(7):1249-55. [PubMed]
9 Kirchhoff KT, Hammes BJ, Kehl KA, et al. Effect of a disease-specific planning intervention on surrogate understanding of patient goals for future medical treatment. J Am Geriatr Soc. 2010;58(7):1233-40. [PubMed]
10 Schwartz CE, Wheeler HB, Hammes B, et al. Early intervention in planning end-of-life care with ambulatory geriatric patients. Arch Intern Med. 2002;162(14):1611-8. [PubMed]
11 The Dartmouth Institute for Health Policy and Clinical Practice. The Dartmouth Atlas of Health Care 2008. Available at: http://www.dartmouthatlas.org/downloads/atlases/2008_Chronic_Care_Atlas.pdf.
12 Detering KM, Hancock AD, Reade MC, et al. The impact of advance care planning on end of life care in elderly patients: randomised controlled trial. BMJ. 2010;340:c1345. [PubMed]
Comment on this Innovation

Disclaimer: The inclusion of an innovation in the Innovations Exchange does not constitute or imply an endorsement by the U.S. Department of Health and Human Services, the Agency for Healthcare Research and Quality, or Westat of the innovation or of the submitter or developer of the innovation. Read more.

Original publication: May 26, 2010.
Original publication indicates the date the profile was first posted to the Innovations Exchange.

Last updated: December 09, 2013.
Last updated indicates the date the most recent changes to the profile were posted to the Innovations Exchange.

Date verified by innovator: December 04, 2013.
Date verified by innovator indicates the most recent date the innovator provided feedback during the annual review process. The innovator is invited to review, update, and verify the profile annually.