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5 Conclusions and Recommendations In order to better understand how Americans die and toimprove the care received by those at the end of life, we must look beyond the death itself to the experience of chronic and terminal illness as well as dying and bereavement. The prevention of premature death will always be a key public health goal, but the well-being of the nation will also be served by the prevention of unnecessary suffering at life’s end. A better description of how Americans of all ages currently die and the impact on their families is much needed and must be followed by continuing efforts to track changes over time. Both the quality of dying and the quality of the health care provided at the end of life should be addressed. No single type of data collection will provide the full range of information needed to comprehensively describe the quality of life and quality of care at the end of life. And the broad sweeps that are the focus of this report should be associated with small focused studies to better understand patterns—such as geographic variation—that can be detected at the national level, but only understood at the local level. Longitudinal, population-based panels will continue to provide an important opportunity to observe events that may have significance to dying when death cannot be predicted. A nationally representative follow-back survey of the next of kin of decedents is essential to capture the depth of information needed to adequately describe events immediately surrounding death. And, finally, surveys of health care agencies and providers are needed to collect information on quality of care from the professional.
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Recommendations to make the best use of current data collection efforts as well as fill important gaps address three broad questions: What could be learned from already existing data? What modifications would improve the usefulness of currently collected data? What new steps should be taken to enhance the accuracy and richness of data collection to better monitor and improve the quality of life and care at the end of life for patients of all ages and their affected families? Recommendation #1: Support Researchers’ Use of Existing Data Systems Agencies should promote research that uses existing data resources to describe aspects of the quality of life and quality of care at the end of life, by publicizing their availability and providing funding for analysis. A great deal of information is recorded, for a variety of purposes, that could describe aspects of quality of life and quality of care at the end of life. It is probably not surprising that Medicare claims and other data collected for purposes other than measuring quality at the end of life are not always used to their fullest for measuring quality, given that their primary purpose is purely administrative. In addition, the full potential value of many surveys and studies of health and well-being in characterizing quality of life and care at the end of life is not realized because data are analyzed only to answer some questions but not others. The reasons for this vary, but include a general lack of funding support for further data analysis, the fact that researchers are unaware of the data resource, and in some cases, the relatively new ability to link data from different sources to facilitate meaningful answers to important questions. Currently, little support is available to researchers to make use of existing data resources in describing aspects of the quality of life and and the care provided to individuals who are dying. Research-funding agencies should provide support for using existing data resources for this purpose. Some examples of the types of studies that could be conducted with modest funding include: Making use of existing longitudinal surveys to examine the health trajectories of those who die in order to learn more about the role of suffering, disability, and chronic illnesses at the end of life. Studying patterns of costs and utilization in the years before death
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to more fully describe the use of home care, hospice care, in-home privately paid help, and informal care. Studying the number of care transitions in the last year of life, both in terms of settings and of providers. Comparing data from multiple settings with regard to the rates of pain and other symptom assessment, and use of opioids and other symptom-relieving interventions. Developing valid indicators of variables and constructs that are important to good end-of-life care. This is an important but slow process—and one that needs to be attended to immediately. Examining individual and institutional factors that influence racial and geographic variations in patterns of end-of-life care. Recommendation #2: Improve the Usefulness of Existing Data Systems Government and private organizations should institute training initiatives and make incremental changes to surveys to improve the usefulness of currently collected data in describing aspects of quality of life and quality of care at the end of life. Training for researchers and incremental changes to surveys would be relatively inexpensive ways to improve the usefulness of currently collected data in describing aspects of quality of life and quality of care at the end of life. Training for Researchers More funding for analysis and better publicity about data sources will improve the use of existing information up to a point, but beyond that, researchers may need training in specific datasets or enhancement of skills to be able to understand the possibilities of existing information collection. Focused training opportunities, limited in scope, can open the way for much better use of what data currently exist. Specific recommendations for training of researchers are as follows: Government agencies that sponsor data collection should sponsor a series of training initiatives to open dialogues among researchers and health care workers to increase the reliability and validity of ongoing data collections. These should emphasize: Training professionals in various disciplines in the use of data sources.
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Training existing palliative care researchers to incorporate research questions in their studies, which would utilize existing data bases. Promoting existing health service researchers with expertise in these databases to collaborate with palliative care researchers. Improving the Quality of Data Recorded Professional organizations should promote increased standardization of language through open dialogue about terms that now have diverse meanings, e.g., hospice care, palliative care, and end of life. In settings where physicians complete death certificates regularly, institute training and quality control measures. The federal government should mandate that institutions and organizations providing care (hospitals, nursing homes, home health agencies, outpatient settings) conduct ongoing quality improvement efforts, including training in recording required data. Incremental Changes to Ongoing Data Collection Efforts The information content for studying end-of-life issues can be enhanced in specific surveys by relatively minor changes. The following improvements, modifications, or supplements to ongoing data collection efforts would be relatively inexpensive ways to build upon existing efforts: Sponsors of longitudinal health surveys should insist on the routine use of “exit” surveys to capture information from the next-of-kin of participants who die between survey rounds. These supplemental surveys not only enhance the existing survey by covering a more inclusive range of outcomes but can provide rich data about end-of-life issues at relatively low cost. Improvements to the information infrastructure, such as nationwide electronic reporting of death certificates, should be made to facilitate more timely collection and analysis of vital information. Sampling frames for current surveys should be carefully reviewed for adequacy both in terms of contemporary housing arrangements and changing health care organizational structures. Survey questions regarding health care utilization should include probes that capture need for and use of the full range of supportive services. Mechanisms should be put in place for continuous refinement of large ongoing surveys, using input from a wide variety of sources. Web-
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based opportunities to e-mail questions and suggestions would facilitate this exchange. The Centers for Medicare and Medicaid Services (CMS)—formerly known as the Health Care Financing Administration—should consider minor increases in the data elements recorded on Medicare claims under the hospice benefit. This topic should be addressed by the Medicare Payment Advisory Commission (MedPAC), a Congressionally-mandated organization that advises CMS on the Medicare system. Ongoing efforts should be directed towards facilitating links among key types of data collection, especially between surveys and health care utilization records. Recommendation #3: A New National Mortality Followback Survey The federal government should undertake a new National Mortality Followback Survey to enhance the accuracy and richness of data collection related to quality of life and care at the end of life. A new National Mortality Followback Survey program of regular, periodic surveys that gather comparable data over time, should be initiated. The new NMFS would be a collaborative effort between the National Center for Health Statistics (which would carry out the survey), the National Institutes of Health (NIH), and the Agency for Healthcare Research and Quality (the latter organizations would sponsor the survey). As the lead institute for end-of-life research at the NIH, the National Institute of Nursing Research could take a major role in supporting a National Mortality Followback Survey and determining content, with collaboration from other NIH institutes (in particular, the National Institute on Aging, but possibly including some of the disease-oriented institutes), and the Agency for Healthcare Research and Quality. Three specific aims should be considered for future National Mortality Followback Surveys. First, a major focus should be on determining the extent of morbidity experienced at the end of life, to aid the long-range goal of reducing unnecessary morbidity. Second, deaths among children should be oversampled in order to yield information specific to this understudied group. And third, minority populations should be over-sampled to improve understanding of ethnic and racial differences in the experience of death and dying in the United States.
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