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ExCEL Steering Committee Tuesday, February 10th, 2004 Minutes Present: Zail Berry, MD; Marilyn Hart, MD; John Campbell; Diana Peirce; Sharon McDonnell, MD; Denise Niemira, MD (by phone); Judy Murphy; Ira Byock, MD; Cy Jordan, MD; Maureen Fraser; Jessa Block; Madeleine Mongan Note: Next Meeting of Steering Committee: Monday, March 8th, 5:30 pm, Vermont Medical Society Other End-of-Life Care Initiatives Several members met early to discuss legislative initiatives, including the creation of a Palliative Care Commission and how ExCEL could fill this role. Contact Madeleine Mongan at the Vermont Medical Society for more information. The Steering Committee then discussed the two committees that the Attorney General’s Office has created -- on Pain and Symptom Management and Advanced Directives -- and the legislative initiatives being proposed by the committees. Many ExCEL members are also active on these committees, which are meeting on a short-term basis with the main goal of policy change. Dr. Zail Berry then asked Dr. Ira Byock to describe some of the research he has been doing. He referred people to the project website: www.promotingexcellence.org His research studied how good palliative care could be implemented in places where hospice typically was not used (inner cities, very rural locations, the VA, dialysis units, cancer units, prisons, pediatric wards). They found that changes were adopted first in “safety net” settings that had global budgets where they could measure cost savings. Overall, they concluded that palliative care can be adopted even in the toughest locations. ExCEL Transition to VPQHC Dr. Cy Jordan described that ExCEL is becoming a project committee of the Vermont Project for Quality in Health Care. He gave Steering Committee members more background on VPQHC, including the organization’s mission, funding history and board composition. He then answered the question “what does VPQ do?” and handed out an outline of VPQ’s strategic goals and operating principles and described how VPQ is staffed. Next, he answered “What does VPQ get out of joining with ExCEL?” He described two goals: that VPQ would like ExCEL to “own” the chapter in the VPQ Quality Report on Care at the End of Life, and that ExCEL will help VPQ to measurably improve the quality of end-of-life care in Vermont. ExCEL will be able to define and create the projects within these broad goals. In turn, ExCEL will receive from VPQ: administrative support, a webpage, minutes, mailings, meeting planning and technical expertise in statistical analysis and quality improvement. Next Steps – Survey At this point, Dr. Berry asked what next steps ExCEL needs to take. She raised the question of whether ExCEL should continue to work within the committee structure the group created in September and ask each committee to identify goals, measures and focus. The group also questioned whether tasks should be divided by action goals (policy change, improving education, etc., instead of by topic) The group discussed the relationship of ExCEL’s work to the research that would be mandated by the Palliative Care Commission bill. The committee discussed that ExCEL could be the group to do this research. The report mandated by the bill could become the end-of-life chapter in the Quality Report and could help the ExCEL committees identify areas where more work needs to be done. The committee agreed that it is also important to work towards collaboration with the various groups trying to improve end-of-life care (the Cancer Society, the Attorney General, ExCEL, etc.) The Committee then discussed how lack of data on end of life care in Vermont is a big problem for quality improvement – how can the group track improvements without a baseline to measure from? Dr. Byock added that you need to be careful how much you limit the scope of what you want to first measure, as end of life care cannot be limited to DURs and symptom management. He described a process of identifying broad domains within which you can measure baseline data and identify priorities for change. He gave the domain examples of continuity of care, bereavement services, patient satisfaction with care/quality of care, community support and services, and support for care-givers. Within each of these domains you could create a metric for measuring quality and then prioritize areas for improvement based on your findings. Dr. Byock asked if the goal of ExCEL is limited to improving health care delivery at the end of life. The group agreed that it is not limited to just health care delivery and should be focused on improving patient-centered quality of care. The bill-mandated report would also not have to be limited to just studying health care delivery. Dr. Niemira described the study she is helping administer in the Northeast Kingdom. For the past four years, they have sent a survey to the next of kin listed on death certificates. The survey asks questions about symptom management, bereavement support, where the death occurred. They receive a 20-40% response rate. The committee then discussed whether this survey could be expanded to the rest of the state. Dr. Niemira thought it could potentially be expanded but not all of the data would be useful in a larger setting. Dr. Jordan asked whether there was a consensus regarding the domains and tools that Dr. Byock described. Dr. Byock said that there is a fairly wide agreement on the domains you would want to examine and the tools for measuring are quickly improving. Dr. Hart asked what the biggest goal for ExCEL is for the year and what ExCEL is trying to accomplish. The Committee agreed that measuring the state of end-of-life care in Vermont, to establish a baseline, is the first priority. The Committee identified the following rough timeline for next steps: ¨ Identify the scope/domains to study ¨ Identify the metrics within the domains and the instruments that exist to measure ¨ Measure within the domains that you can, possibly based on available tools ¨ Identify the biggest gaps and needs in care ¨ Prioritize what areas to work on, possibly starting with one area The Committee discussed using validated, well structured after-death interviews to perform the study; the study can add follow-up questions or other types of data as the project continues. The Committee then brought up questions of how to implement a study across the state in a random fashion, as well as funding sources. The group agreed that grants would probably be available to help with this sort of research and funding questions can be answered later in the planning stages. Dr. Berry proposed that 3 or 4 ExCEL members form a subcommittee to identify the patient-centered domains that ExCEL wants to study and the 3 or 4 tools that could be used to measure these domains; the subcommittee will bring back the pros and cons of the tools to the Steering Committee. Dr. Byock added that in the end it is probably best to select only one measurement tool that can span across several domains. Dr. Berry, Dr. McDonnell and Dr. Mills agreed to be on the subcommittee. Any other ExCEL members interested in being on this subcommittee, contact Zail Berry or Maureen Fraiser at VPQ. The next meeting of the Subcommittee will be to review the possible domains and tools for measurement and plan next steps for the study. Dr. Jordan ended by describing how you could implement such a survey by randomly selecting death certificates and identifying next of kin, mailing or visiting the individuals selected, and performing the survey. He mentioned that the momentum created by the Death With Dignity movement could encourage Vermonters to want to participate and describe their experiences with end of life care.
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