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Tables of Contents for Describing Death in America
Chapter/Section Title
Page #
Page Count
Executive Summary
1
15
Introduction and Overview
16
5
Background on End-of-Life Issues
17
1
Numbers and Causes of Death in the United States
18
2
Overview of the Current Report
20
1
Key Data Elements Pertaining to the End of Life
21
7
Definition of ``The End of Life''
22
1
Categories of Data Relevant to the Quality of Life and Care of People at the End of Life
22
6
Currently Available Datasets
28
25
Datasets Traditionally Used to Describe Dying
29
8
Census Bureau Surveys
37
1
National Health Surveys
38
3
Surveys Focused on the Elderly
41
2
Disease Registries and Surveillance Studies
43
1
Reimbursement-Specific Administrative Databases
44
1
Other Data Collected by and About Health Care Organizations
45
4
Tools for Accessing Data
49
1
Information Most Readily Available from Existing Data Sources
49
1
Limitations of Existing Data Sources in Answering Key Questions
50
3
Methodological Issues in the Collection and Use of Data About Dying
53
10
Methodological Issues Identified by End-of-Life Researchers
53
2
Methodological Issues Related to the Use of Existing Datasets
55
1
Methodological Issues Related to Survey Methods
56
2
Analytic Issues in Using Data from Identified Decedents
58
1
Issues Related to Privacy, Confidentiality, and Linking Datasets
59
4
Conclusions and Recommendations
63
5
References
68
5
Appendixes
A Administrative Information for Relevant Datasets
73
23
B Information on Selected Variables
96
11
C Workshop Agenda and Participants
107