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ExCEL A Steering Committee of VPQHC 2004 Spring Meeting Friday, June 11, 2004
Minutes
Attendees present: David Babbott, M.D., Retired UVM Professor of Medicine; Zail Berry, M.D., Aesculapius Medical Center; Peggy Bishop, ARNP, Dartmouth-Hitchcock Medical Center; Annette Blanchard, Franklin County Home Health; Jessa Block, Vermont Medical Society; Esther Boorse, R.N, Bennington Area Home Health; Fran Brokaw, M.D., Dartmouth-Hitchcock Medical Center; Diane Caccavo, RPh, Central Vermont Hospital; John Campbell, Vermont Ethics Network; Angel Collins, M.S., R.N., VNA of Chittenden and Grand Isle; Brookes Cowan, Madison Deane Initiative; Ginny Fry, M.A., Hospice Palliative Care Council of VT and Central Vermont Home Health and Hospice; Marilyn Hart, M.D., Central Vermont Hospice; Deborah LaMoy, R.N., Blue Cross Blue Shield of Vermont; Joan Madison, M.D., Madison-Deane Initiative; Sharon McDonnell, M.D., M.P.H, CDC and VDH; Letha Mills, M.D., SW Vermont Cancer Center & Hospice; Madeleine Mongan, Vermont Medical Society; Rhoda Neader, Fletcher Allen Health Care; Denise Niemira, M.D., Northeast Kingdom Palliative Care Initiative; Diana Peirce, R.N., Central Vermont Home Health and Hospice; Melissa Prouty, R.N., Bennington Home Health; Joane Root, R.N., North Country Hospital; Barb Segal, R.N., Fletcher-Allen Health Care Palliative Care Service; Lisa Szczepaniak, ARNP, Dartmouth-Hitchcock Medical Center Palliative Care; Olivia Weed, MSW, Northwestern Medical Center.
Introductions: Zail Berry called the meeting to order at 9 am and presented the agenda for the morning. Attendees introduced themselves.
Organizational Update
o ExCEL Then and Now: Diana Peirce described the history of ExCEL: ExCEL began in 1997 as the Vermont Palliative Care Initiative. It was an outgrowth of the Vermont Medical Society Ethics Committee and resulted from discussions on physician assisted suicide legislation. The goal was to coordinate efforts between existing groups working on end of life care statewide. The group changed its name to ExCEL – Excellent Care at the End of Life -- and continued its mission of coordinating statewide efforts.
After a gradual loss of focus, the group applied for a Robert Wood Johnson Rallying Points grant to fund a planning retreat. The meeting occurred in September 2003 and approximately 35 ExCEL coalition members attended. The group established a mission and vision, changed its name to Excellent Collaboration at the End of Life, and restructured the coalition. There are now three co-chairs from northern, central and southern Vermont, a committee structure, and a steering committee made up of the three co-chairs and committee chairs. The committees meet as needed, to work on specific tasks or projects. Larger coalition membership still exists and all coalition members should still receive periodic mailings and updates.
ExCEL also decided to seek a new administrative home that could offer more administrative support than the Vermont Medical Society, and was not an advocacy organization. ExCEL approached the Vermont Program for Quality in Health Care, Inc (VPQHC), because they believed that ExCEL’s mission fit with the VPQHC goal of assessing and improving end-of-life care. After several presentations, VPQHC agreed to take on ExCEL as a steering or project committee. ExCEL agreed to lead the end-of-life project for VPQHC, as well as write the chapter of their annual Quality Report on end of life care. In turn, VPQHC will provide administrative and technical support.
VPQHC staff would be at this meeting except that they had a staff retreat planned for the same day.
Action Step: make sure that all ExCEL members’ addresses and emails from the VMS roster are transitioned to VPQHC and the new mailing list. Some members have not been receiving mailings.
o Introducing VPQHC: Madeleine Mongan provided some background on VPQHC. They are a 501(C)3 with the goal of improving the quality of health care in Vermont. Their Director is Helen Riehle and the Medical Director is Cy Jordan, MD, MPH. Major projects that they have worked on include a diabetes collaborative and creating an electronic patient registry. They also publish an annual Quality Report. They have a history of collecting baseline data on quality of care, researching and disseminating best practices, and following changes in indicators over time – this model could fit well with the goals of ExCEL for end of life care. Attendees discussed VPQ’s methods of expert consensus building, using academic detailing to educate clinicians, improvements in care based on disseminating data on regional indicators, and how VPQHC is funded.
Present Focus
Much of ExCEL committee time this winter has been spent working with two groups created by the Vermont Attorney General’s office. Last fall, the Attorney General first convened a meeting of all parties interested in improving end of life care through legislative or policy change. The larger group split into two working groups: advanced care planning and pain and symptom management. The groups were expecting to have six months to create legislative and policy recommendations but ended up having to work immediately on bills introduced by the legislature at the beginning of the session. Forms of the bills have since passed, and the committees will continue to meet to make recommendations for the next legislative session. Madeleine Mongan mentioned that you can join the AG committee list serves even if you cannot attend the meetings.
o Advanced Care Planning: John Campbell is currently the chair of the ExCEL Choices in Planning for End of Life Care Committee and has been attending the Attorney General’s Advanced Care Planning Committee. While most of the ExCEL committee work has been focused on the AG’s initiative, John would like the committee to meet again soon to discuss a statewide DNR registry system.
The bill that passed the legislature on advanced care planning creates a study committee: there was not universal consensus on some of the concepts and more input is needed. To help shape the direction that a bill might go next year, the AG is helping to organize public hearings. ExCEL members should encourage clinicians and families to attend the meetings: it is very important for the AG and legislature to hear how end-of-life care really works. Hearings are occurring:
Wednesday, June 30th, 2004 4-6:30 pm Burlington High School
Thursday, July 1, 2004 10 am- 12:30 pm Bennington Library
Thursday, July 1, 2004 3:30 pm – 6 pm Vermont Interactive Television: White River Junction, Brattleboro, Lyndonville, Newport, Rutland and Waterbury
Sharon McDonnell added that it could be helpful to have some objective information presented at the beginning of the hearings, such as the definitions of DNRs, living wills, etc.
Attendees discussed the success of out-of-hospital DNRs and when ExCEL can address that issue. One attendee mentioned that FAHC approved an out-of-hospital DNR policy this week.
o Pain and Symptom Management: Diana Peirce described efforts to work with the Attorney General’s Pain and Symptom Management Committee. The legislation introduced would have mandated license-based education on pain management. The AGs committee supported this effort, but may not have invited enough affected parties to the table to discuss the initiative. For example, nurses and physicians both opposed the move, while for different reasons. Diana added that this summer the group needs to include people earlier and get consensus on questions such as: “Can we agree that clinicians need more education?” and “Do we agree that pain management needs to be done better?” Attendees discussed the roll that data collection could play in convincing clinicians that there needs to be better pain management. Some hospitals could also become early adopters of required education. Attendees also discussed methods of education, such as on-line courses.
Diana distributed copies of the final legislation that did pass this year – creating a study committee on pan management and clinician education. The legislation also changes the nursing home and hospital patient bill of rights to include the right to pain and symptom management; hospital and nursing home patients will now be surveyed for satisfaction.
Attendees discussed making this meeting (the Hospice Council meeting) more clinician focused, including the possibility of creating another track for clinicians.
Action Step: Denise Niemira will approach AHEC to see if they will offer CMEs, CEUs, pharmacist continuing education credit, for the meeting.
Attendees discussed how to convince physicians that care at the end of life is not as good as it could be.
Action Step: ExCEL institutional members could consider publishing newsletter articles that demonstrate what an ideal end-of-life care team/care experience would look like.
Attendees discussed Denise Niemira’s end-of-life care study in the Northeast Kingdom and whether feedback to physicians on their care could help improve quality. Surveys could help physicians and hospitals begin to discuss these issues and raise awareness.
o Funding/Research: Sharon McDonnell explained that the legislation that just passed mandates a study of end of life care and pain management benchmarks. ExCEL and VPQ plan to do much of the work to complete the study (currently it sits in the Department of Health Surveillance Department). The study is unfunded so ExCEL and VPQ have applied to Rallying Points for a $10,000 grant. The study would use computer and voice technology to survey people over the phone. It would survey family members of those who have died in hospice, hospital and home settings, using a validated instrument created by Joan Teno of Brown University. Attendees discussed how to create a sample for surveying, how to get the names of those who have died, how a computer voice system will compare to in-person interviewing, and the design of Denise Niemira’s and hospice’s surveys.
Sharon agreed that there are a lot of ways to approach studying end of life care. There are opportunities to survey hospitals for DNR use, use the behavior risk survey, and the Quality Indicator Group with the Department of Health that creates hospital patient surveys. Madeleine Mongan questioned whether the process for the survey was clear. The Steering Committee will be meeting with VPQ in early July to solidify the process and goals for moving ahead.
Action Steps: Steering Committee meetings are open to any interested ExCEL coalition member; announcements will be sent to everyone. The Membership Committee will review the membership list with VPQ to make sure it is current and complete. All members will receive a mailing including the palliative sedation guidelines, the advanced directives article and the ExCEL organization letter that have been discussed at this meeting. ExCEL website should transition to VPQ website (from VMS), and should be updated by VPQ to include most recent minutes and information. Co-chairs will meet with VPQ staff to discuss the on-going transition to VPQ support.
Next Steps:
o Education: Denise Niemira explained that ExCEL can use a Rallying Points Certificate to fully fund a program or speaker. Action Step: John Campbell will work with VPQ to propose a program on Advanced Directives with Bud Hammus.
Sharon McDonnell also envisions a physician (Zail Berry?) doing CME programs statewide to educate other physicians and possibly distribute local resource guides.
Zail Berry proposed that ExCEL should create an Annual Meeting Planning Committee to create more programs for clinicians at the annual meeting. Action Step: Proposal was accepted by ExCEL. Annual Meeting Planning Committee will be made up of Lisa Szczepaniak, Ginny Fry, Angel Collins, John Campbell, Deborah LaMoy, and Barb Segal. Chair will be Barb Segal.
John Campbell proposed that an interested group work on exploring an advanced directives and organ donation registry. Action Step: John Campbell and Sharon McDonnell will work on this project.
Attendees questioned whether ExCEL could partner more closely with AHEC to provide education to clinicians statewide. Could AHEC become a coalition member? Action Step: Coalition needs a membership recruitment letter to send to organizations/individuals who would strengthen ExCEL. Letter should include text from letter sent from co-chairs describing the changes in the coalition, the mission and vision. This could also be sent to AHEC. (Who will create letter?)
Sharon McDonnell proposed that ExCEL get students more involved with some of the research projects. Action Step: Create a potential project list for students at the upcoming Steering Committee Meeting in July. ExCEL could also medical/graduate students to present research at the Annual Meeting.
Other Announcements: Joan Madison announced that Brookes Cowan is going on sabbatical to develop the Madison-Deane Center for Excellence at UVM in conjunction with the Medical and Nursing schools Ira Byock is developing a parallel program at Dartmouth, and the two hope to collaborate closely. UVM is also developing the first Chair at the Nursing School, in palliative care.
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