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| The Vermont Health Care Quality Report 2008 |
Ch2: Measuring Quality of Care Ch3: Chronic Illness in Vermont
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Care at the End of Life Introduction What is quality end of life care? How do we know if the people of Vermont are receiving it? What measures are available to assess it? These are the questions that the Vermont Program for Quality in Health Care (VPQ), and others throughout the state, are facing as they look to evaluate how Vermonters are experiencing the healthcare system during their last months and weeks of life. 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. However, over the years, attempts have been made to quantify this elusive measure. A study undertaken in 1997 by the Vermont Ethics Network gathered qualitative data on experiences with end of life care for loved ones, including unmet needs for family and friends, and how decisions about care were made. On a national level, organizations such as the Last Acts Coalition (http://www.rwjf.org/newsroom/feature.jsp?id=20938&typeid=151) and the University of Wisconsin Pain and Policy Studies Group (http://www.painpolicy.wisc.edu/) have used the quality of advanced directive laws, location of death, hospice use, palliative care programs, and pain policies to look at end of life care. In the spring of this year (2008), Vermont passed S. 281: An act relating to end of life care and pain management. This act calls for the creation of a study committee that will report back to the house and senate by January of 2009. This report will look at palliative care, end of life care, and pain management in Vermont. Excellent Collaboration at End of Life (Excel) ExCEL is a subcommittee of VPQ, and is comprised of individuals and organizational representatives with a wide range of experiences and perspectives regarding end of life care in Vermont. The mission of the group is to serve as a network of groups and individuals working together to improve end of life and grief experiences for people in Vermont, through education and the sharing of resources. ExCEL membership is broad. Members include: representatives from community and academic medical centers, hospices, visiting nurses associations, the Vermont Funeral Directors Association, the Vermont Medical Society, 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. Past Work In May of 2005, ExCEL was awarded a grant to adapt and field test an end-of-life care survey for the purpose of planning a statewide study on end of life care. The survey was ultimately administered to survivors of Vermonters who died of natural causes in the state. A total of 976 surveys were sent out to individuals listed as the contact person on the death certificates for all Vermonters who died from natural causes in the fourth quarter of 2004 (October – December, 2004). One hundred twenty five people responded (13%). Results of the survey indicated that the majority of the respondents felt that pain, trouble breathing, and anxiety were common experiences during end of life care, but that these issues were adequately addressed by the healthcare provider. The majority of people received palliative care during the last week of life, and most received their care outside of the hospital setting. Some of the results of the survey are listed in the tables below. When asked about the individual’s difficulties during the last week, respondents indicated:
When asked about personal care and information, respondents indicated:
Twenty-six percent of respondents felt there were other important issues not covered by the survey and shared that information through the narrative portion of the IVR system. The comments focused on several main themes, including: a need for increased hospice and respite services; a lack of information about what to expect in the last hours of life and a need for increased knowledge in this area; the importance of valuing the participation of the patient and caregiver in the dying process; a need for inclusion of complementary and alternative medicines; and finally an expression of gratitude for the medical personnel who went out of their way to ease the dying process, both emotionally and physically, for the patient and their caregivers. In 2007, members of ExCEL were asked to identify two or three key barriers to providing quality care for Vermonters at the end of life. The barriers identified were: funding issues; cultural issues; pain and symptom management; resources for the support of patients and their caregivers; advanced directives planning; lack of data; and adequate staffing. Next Steps Discussions with the ExCEL membership recognized that the issues Vermonters face at the end of life are linked with the issues that Vermonters face across the healthcare spectrum, availability of resources and support, chronic disease management including Alzheimer’s and chronic pain. The need for improved quality of care at end of life needs to remain a high priority for all Vermonters.
VPQ has seen this methodology succeed in the Chronic Care arena, and IHI has used this model for improving end of life care at the national level. The results of the Institute for Healthcare Improvement (IHI) Breakthrough Series Collaborative on Improving End-of-Life Care are outlined in “Improving Care for the End of Life: A Sourcebook for Health Care Managers and Clinicians”. Over 45 people representing 11 teams from communities around Vermont attended the kick-off Learning Session on Friday May 23, 2008. Topics included an introduction to quality improvement and change methodology, information about the national Collaborative, a presentation on how this work has been applied in a local community, along with information about advanced directives. There was also time for participants to begin working on changes they would like to make in their own practice setting using the Model for Improvement and Clinical Microsystems methodology. For more information about the Collaborative please contact Patty Launer at 802-229-2152, or at pattyl@vpqhc.org. |
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