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Executive Summary
Pages 1-15

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From page 1... ... We have only begun to pay attention to the circumstances in which chronically ill people approach death and experience the dying process. We know relatively little about the quality, appropriateness, or costs of care they receive, or the burden on caregivers and survivors. Read the entire page →
From page 2... ... The Board noted that we have little understanding of the particular dying experiences of most patients with cancer where they die, who cares for them as they are dying, what the quality of such care is, whether care guidelines are being followed, and whether these things are changing over time. This lack of information hampers our ability to develop a clear policy agenda and will, in the future, impede monitoring trends to determine whether interventions are having their intended effects of improving the quality of life for individuals at the end of life. Read the entire page →
From page 3... ... The suffering and distress is caused in some cases when caregivers provide care that is clinically inappropriate or not wanted by the patient; in other cases, it results when caregivers underuse effective treatments to relieve pain or other physical or psychological symptoms (IOM, 1997~. As a consequence, many Americans "have come both to fear a technologically overtreated and protracted death and to dread the prospect of abandonment and untreated physical and emotional distress" (IOM, 1997~. Read the entire page →
From page 4... ... One category of outcomes in dying patients for which there is particularly strong normative and empirical evidence to support quality measures is pain management (Teno, 2001~. In 1997, the IOM reported on the American Geriatrics Society suggestions for other domains of quality of care for dying patients, among them physical and emotional symptoms, support of functioning and autonomy, advance care planning, aggressive care near death, patient and family satisfaction, and global quality of life (IOM, 1997~. Read the entire page →
From page 5... ... In this report, the end of life is defined very broadly, to include the period during which an individual copes with declining health from an ultimately terminal illness, from a serious though perhaps chronic illness, or from the frailties associated with advanced age even if death is not clearly imminent. Public discussions and focus group research have helped us to understand what the American public values in the care of the dying (Steinhauser et al., 2000a, b; Teno et al., 2001~. Read the entire page →
From page 6... ... SOURCES OF DATA Very few efforts to gather data specifically to illuminate the issues surrounding dying and the end of life have been made, but data are routinely collected for other purposes that can fill some of the needs. In some cases, data simply must be extracted and analyzed to prove useful, and in other cases, changes in what is collected routinely could greatly improve the usefulness of various data sources for these purposes. Read the entire page →
From page 7... ... Both the quality of dying and the quality of the health care provided at the end of life should be addressed. The IOM's recommendations, summarized below, address supporting the use of existing data systems, improving the usefulness of existing data systems, and undertaking new data collection efforts to learn about the quality of life and care at the end of life. Read the entire page →
From page 8... ... 8 DESCRIBING DEATH IN AMERICA TABLE ES-2 Types of Data Available from Datasets That Contain Individual-Level Information Number Pain or other Data of deaths Cause physical Physical type year[s] of death Comorbidities symptoms funchon AHEAD C1 MCBS B 1,900 (1993-98) Read the entire page →
From page 9... ... XECUTIVE SUMMARY or other ical Moms Physical Psychological function symptoms Site of Lived QoL Cognition death with Social support 9 t/ t/ Read the entire page →
From page 10... ... ; AHEAD Asset and Health Dynamics Among the Oldest Old; LSOA Longitudinal Survey of Aging; MCBS Medicare Current Beneficiary Survey; MDS nursing home Minimum Data Set; MEPS Medicare Expenditure Panel Survey; NDI National Death Index; NHANES National Health and Nutrition Examination Survey; NHEFS NHANES I Epidemiologic Followup Survey; NHHCS National Home and Hospice Care Survey; NHIS National Health Interview Survey; NLTCS National Read the entire page →
From page 11... ... EXECUTIVE SUMMARY 11 ADS Decision Use of making Satisfaction Support services Quality Providel Long-Term Care Survey; NMFS National Mortality Followback Survey; NNHSNational Nursing Home Survey; OASIS Outcome and Assessment Information Set; PSID Panel Study of Income Dynamics. 1Deaths during 5-year follow-up period total 20-year follow-up (1971-1992~. Read the entire page →
From page 12... ... 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 to more fully describe the use of home care, hospice care, in-home privately paid help, and informal care. Read the entire page →
From page 13... ... � 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. Read the entire page →
From page 14... ... � 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. Read the entire page →
From page 15... ... , and the Agency for Healthcare Research and Quality. Three specific aims should be considered for future National Mortality Followback Surveys. Read the entire page →

From page 1...

... We have only begun to pay attention to the circumstances in which chronically ill people approach death and experience the dying process. We know relatively little about the quality, appropriateness, or costs of care they receive, or the burden on caregivers and survivors.

Executive Summary Pages 1-15

Executive Summary
Pages 1-15