BARRIERS TO ADVANCE CARE PLANNING AND ADVANCE DIRECTIVE COMPLETION Barriers Related to the Design and Purpose of Advance Directives Barriers Related to Patients and their Families Barriers Related to Ineffective Application of Advance Directives Barriers Related to Clinical Experience and Training Barriers Related to Organization of the Health Care System VII. ADVANCE DIRECTIVES AND ADVANCE CARE PLANNING AMONG PERSONS WITH DISABILITIES Who are Persons with Disabilities? How Would Advance Care Planning be Different if the Disabled Community were Engaged from the Start? Advance Directives and Advance Care Planning for People with Physical Disabilities Advance Care Planning for People with Intellectual Disabilities Advance Care Planning for People with Psychiatric Disability VI. STRUCTURE AND USE OF ADVANCE DIRECTIVES AND ADVANCE CARE PLANNING Only a Small Percentage of Adults Complete Advance Care Planning and Advance Directives Advance Directive Use Differs by Care Setting Knowledge and Use of Advance Directives Vary by Race, Ethnicity and Culture Use of Advance Directives among Individuals with Cognitive Impairment Preferences May Change Patient-Provider Communication Affects Use of Advance Care Planning and Advance Directives V.
HISTORICAL PERSPECTIVE AND ETHICAL ISSUES IN ADVANCE DIRECTIVES AND ADVANCE CARE PLANNING The History of Advance Care Planning and Advance Directives in the United States Ethical Issues IV. INTRODUCTION Advance Directives in the Context of Advance Care Planning and Other Factors that Influence End-of-Life Care Advance Care Planning Models, the Disability Community, and Other Under-Represented Groups This Report II. TABLE OF CONTENTS PREFACE LIST OF ACRONYMS EXECUTIVE SUMMARY I. They do not necessarily reflect the views of the Department of Health and Human Services, the contractor or any other funding organization. The opinions and views expressed in this report are those of the author. In addition, specific commissioned papers by Myra Christopher, John Carney, M.Ed., Charles Sabatino, J.D., and Gary Stein, J.D., M.S.W. Department of Health and Human Services, Office of the Assistant Secretary for Planning and Evaluation (including Judith Peres, L.C.S.W.-C.). Shugarman, Ph.D., with Anne Wilkinson, Ph.D.) and staff from the U.S.
Their e-mail addresses are: and report was prepared through a contract with RAND Health (Neil S. Humphrey Building, 200 Independence Avenue, S.W., Washington, D.C.
For additional information about this subject, you can visit the DALTCP home page at or contact the ASPE Project Officer, Susan Polniaszek and Judith Peres, at HHS/ASPE/DALTCP, Room 424E, H.H. Department of Health and the RAND Corporation. This report was prepared under contract #HHS-100-03-0023 between the U.S. Department of Health and Human Services Office of the Assistant Secretary for Planning and Evaluation August 2008
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