Vermont Program for Quality in Health Care

Opportunity Awards - Application

I. Coalition Information

Name of Coalition: Excellent Collaboration at the End of Life (ExCEL)

Name of Leader: Patty Launer, RN, Quality Improvement Specialist, Vermont Program for Quality in Health Care, Inc.

Address: 132 Main Street, PO Box 1356, Montpelier, VT 05601

Phone: (802) 229-2152

Fax: (802) 229-5098

Email: pattyl@vpqhc.org

Co-chairs: Zail Berry, MD, MPH, Letha Mills, MD, Diana Pierce, RN

ExCEL is comprised of individuals and organizational representatives statewide with a wide range of experiences and perspectives regarding end of life care in Vermont. Our shared vision is that in Vermont, people’s end of life and grief experiences will include excellent care that respects wishes, values and concerns. Our mission is to serve as a network of groups and individuals in Vermont working together to improve end of life and grief experiences for everyone, through education and the sharing of resources.

ExCEL membership is broad. Coalition members include: representatives from community and academic medical centers, hospices, visiting nurses associations, the Vermont Funeral Directors Association, the Vermont Medical Society, the Vermont Project for Quality in Health Care, the Vermont Ethics Network, the Vermont Department of Aging and Disabilities, the Vermont Department of Health, the Community of Vermont Elders, the Vermont Chapter of the American Cancer Society, the Vermont Office of the Attorney General, the University of Vermont School of Medicine, and insurers, as well as individual physicians, nurses and clergy.

For the purposes of this grant, we expect to strengthen relationships with specific coalition members, including the Vermont Department of Health, the Vermont Funeral Directors Association, and clergy, and potentially identify new coalition members.

I a. Background

Very little data on the quality of end of life care in Vermont exists, especially for those who die outside of the hospital or hospice systems. Limited data does exist. A 1997 study performed by the Vermont Ethics Network gathered qualitative data on experiences with end of life care for loved ones, including how decisions about care were made and unmet needs for family and friends. The Last Acts Coalition 2002 report, “Means to a Better End: A Report on Dying in America Today,” did rank Vermont’s quality of advanced directive laws, location of death, hospice use, palliative care programs and pain policies. The University of Wisconsin Pain and Policy Studies Group also ranked Vermont’s pain policies in 2003 (Vermont earned a “C”). The Vermont Pain Initiative studied the quality of pain management in select Vermont hospitals and the national hospice palliative care organization has just begun distributing family satisfaction surveys. Much of this data is limited in scope, however, to select locations of care, general trends or policies.

As the Institute of Medicine recommended in the 1997 report “Approaching Death: Improving Care at the End of Life,” in order to improve end of life care, we need to strengthen our methods for measuring outcomes of care for dying patients. Vermont lacks a systematic method for gathering quantitative data on how we care for our dying. With this grant, we propose to create such a method, in order to establish a baseline for our state’s quality of end of life care, and be able to track improvements.

II. Application Questions

1. Please describe your idea

In order to establish the current state of end-of-life care in Vermont, to identify priority areas for our coalition to work to improve care, and to track our improvement, ExCEL seeks an Opportunity Grant to adapt and field test an end-of-life care survey for the purpose of planning a statewide survey. The survey will ultimately be administered to survivors of Vermonters who have died in any setting statewide, including hospitals, nursing homes and at home. ExCEL partners, including the Vermont Program for Quality in Health Care, the Vermont Department of Health and the Vermont Medical Society, have committed to implementing an end-of-life care baseline survey.

The grant period will include the initial phases of the survey project, including:

adapting and validating an existing survey tool to Vermont’s needs, addressing applicability to all settings and regions of the state;
- the coalition has identified a high quality, validated survey tool, developed by J. Teno at Brown University and used in a national study; we will adapt the tool, in collaboration with Brown University staff, to create a shorter instrument that can be validated for home, hospital, and nursing home use in Vermont (see Appendix A);
strengthening partnerships with existing coalition members, and identifying new members as necessary, to complete a validated survey; targets for this project include Vermont Department of Health, the Vital Statistics Office, the Office of the Medical Examiner, the Vermont Funeral Board, the Vermont Attorney General, health care professionals and families;
developing the appropriate methodology to identify and contact potential respondents in the appropriate timeframe;
- partnering with funeral directors, in particular, may allow us to contact participants in a timely and standardized fashion, overcoming hurdles experienced in some previous end of life care studies;
developing and testing the methodology for implementing a statewide survey using interactive voice response technology (see Appendix B);
completing the Institutional Review Board approval process through the Vermont Department of Health;
completing a field test of the survey with 10 to 20 families, with follow-up and related analysis, to test the survey tool and methodology;
developing a strategic plan, including funding, for implementing and sustaining a full statewide survey.

See Appendix C for timeline.

2. Please describe how you plan to use the award funds

The award will be used to fund the planning and field test phases of implementing a statewide end-of-life care survey. This will include initial capital expenses, along with the costs of adapting, field testing and analyzing the survey.

Capital expenses will include the purchase of the Interactive Voice Response (IRV) technology, a low-cost alternative to completing staffed phone interviews (see Appendix A), and a toll-free phone line for field test respondents to use. In addition, the grant will fund survey partner meetings and staff time to adapt the survey tool to Vermont, program the IRV system, prepare and present the IRB application, collect and analyze field test results, and prepare and implement outreach efforts. The grant will also fund outreach costs such as informing physicians, funeral directors, clergy and the public about the survey, and mailing survey information to potential participants.

3. Why do you think your coalition could benefit from this opportunity?

Our coalition will benefit from the opportunity to plan and pilot a survey for several reasons. The project will allow us to:

Obtain critical information and improve our ability to plan for end of life care services
- In order to fulfill our mission of improving end of life experiences, we need to know what experiences Vermonters at the end of life, and their families, currently face. An established baseline, starting as a result of this funding opportunity, will show us where to focus our resources to improve care and allow us to track change. This data will benefit not only our coalition as a whole, but will also help to direct the work of member organizations (hospitals, state agencies, hospices) and allow us to develop and improve cohesive transition of services between settings and disciplines. Additionally, we hope that this data can be incorporated into the chapter on end-of-life care in The Vermont Health Care Quality Report, published annually by the Vermont Program for Quality in Health Care.
Disseminate information on end-of-life care in Vermont.
- Improved data on end-of-life care will allow us to present information on strengths and needs to new audiences, such as clergy, legislators, administrators and health care institutions. Vermont’s legislature and Attorney General’s Office is actively seeking more information on end-of-life care.
Strengthen our partnerships with existing members, and help us recruit new members
- Jointly developing a necessary survey and methodology will strengthen our working relationships with existing and new member organizations, and create opportunities for future collaboration, such as a Department of Health initiative to create new death certificates.
Allow our coalition to test the ability to adapt a national survey to local needs
- We hope to successfully adapt a national, validated survey to our geographic, cultural and institutional needs. Using a validated survey would allow us to compare some results to national data. We hope that this could be a helpful methodology to share with other coalitions and states, as well.

4. How does your coalition intend to maintain the momentum from this opportunity?

Our coalition is considering this opportunity award a planning grant that will lead to a larger, statewide project. The data we gather from the pilot, and the capital investment in equipment, will allow us to compete for additional grants to fund the full implementation of this survey, and future studies on end-of-life care. If this pilot allows us to demonstrate the success of an end-of-life survey and methodology, it is also possible that the survey could be incorporated into ongoing Vermont surveillance projects, such as the Comprehensive Cancer Control Planning Grant from the CDC or from the Department of Health. In addition, the working relationships that we develop with members and new partners will create opportunities for collaborating on future projects and applying for joint funding.

There is already a strong momentum in Vermont to improve end of life care, however more data is needed. Our Attorney General created two committees this fall, one to study advanced directives and one to study pain care. Our legislature also proposed two bills this winter, to address advanced directives, living wills and pain management at the end of life. Both of these initiatives should be driven by data regarding the needs of Vermont families. This funding opportunity will allow us to plan and begin testing a statewide survey tool that can inform Vermont’s discussion on improving care and the end of life.

5. Please itemize your expenses here

Please see Appendix D.

6. Total Financial Request: $10,000

7. Do you agree to use these funds within 6 months of payment and to submit an expense report at the conclusion of those 6 months?

_x__ Yes ___ No

Email: mail@vpqhc.org
Phone: 802.229.2152
Fax: 802.229.5098

Vermont Program for Quality in Health Care, Inc.
132 Main Street, P.O. Box 1356, Montpelier, VT 05601