Resource Guide Outline

The Resource Guide is intended to be a companion document to the Report to the Board of Directors from the Working Group on End-of-Life Decisions and Assisted Suicide (Report to the Board). It is divided into nine chapters, each of which provides more depth coverage than was possible in the original Report to the Board. Each chapter includes an introduction and overview of the material, a summary of the empirical research with an emphasis on synthesizing the information, and a summary and conclusion section that explicates the implications for psychologists in their roles as clinicians, educators, researchers, and/or policy advocates.

After the nine chapters, there is a set of references, a glossary of terms used in discussing end of life decision-making, a list of Advisory Committee Members who provided feedback on an earlier version of the document, a list of resources, and an annotated bibliography.

I. Chapter One--Introduction and Overview
II. Chapter Two--The Current Context of Death
III. Chapter Three--The Experience of Dying
IV. Chapter Four-Controversial End-of-Life Decisions
V. Chapter Five--Attitudes About End-of-Life Issues
VI. Chapter Six--Provider Issues
VII. Chapter Seven--Practice Issues for the Psychologist
VIII. Chapter Eight--Education, Research, and Policy Issues
IX. Chapter Nine--Conclusions and Recommendations
X. References
XI. Glossary
XII. Appendix A: Advisory Committee Members Who Provided Feedback
XIII. Appendix B: Resource List
XIV. Appendix C: Annotated Bibliography

Chapter One is designed as an provide a foundation for the rest of the guide. It provides an introduction, a discussion of the historical context within which death has occurred, and an overview of recent key developments related to end-of-life decisions.

I. Chapter One--Introduction and Overview

1. Introduction
   1. Formation of Working Group on Assisted Suicide and End-of-Life Decisions
   2. Description of the Working Group's Report to the Board of Directors
   3. Organization of the Resource Guide
   4. Scope of the Resource Guide
2. Historical Context
   1. Demographic Changes
   2. Changes in Medicine and Technology
   3. Changes in Place and Causes of Death
   4. Shifts in Attitudes Toward Healthcare
3. Overview of Key Recent Developments
   1. Oregon
   2. Supreme Court Cases
   3. United States Congress

Chapter Two reviews the context in which end-of-life decisions in the United States are made. It begins with a review of the cultural considerations that affect end-of-life decision-making, then discusses how differential issues of access and the involvement of others are important at the end-of-life, and concludes with an overview of seven different end-of-life decisions.

II. Chapter Two--The Current Context of Death

1. Cultural Considerations
   1. General Issues
   2. Longevity Among Various Sub-Groups
   3. Health Overview
   4. Health Care
   5. Marital Status as a Mediator of Longevity
   6. Finances as a Mediator of Longevity
   7. Education as a Mediator of Longevity
2. Issues of Access
3. Involvement of Others
4. Examining the Full Array of End-of-Life Decisions
   1. Advance Directives
   2. Decisions About When Care is Futile
   3. Voluntarily Stopping Eating and Drinking
   4. Withholding or Withdrawing Treatment
   5. Aggressive Palliative Care
      1. a. Double Effect
      2. b. Terminal Sedation
   6. Assisted Suicide
   7. Euthanasia

Chapter Three is designed to provide an overview of the experience of dying. The chapter reviews generic issues of loss and trauma, important elements for assessment and intervention, and three types of models for the experience of dying. It then describes the experience of the dying person, followed by the experiences of significant others, and concludes with a review of physical and psychological issues that may be faced by both the person who is dying and this individual's loved ones.

III. Chapter Three--The Experience of Dying

1. Generic Issues of Loss and Trauma
   1. Types of Loss
   2. Grief and Mourning
   3. The Course of Bereavement
   4. Anticipatory and Preparatory Mourning
   5. Traumatic Stress
2. Influencing Factors: Critical Elements for Assessment and Intervention
   1. Psychological Factors
   2. Social Factors
   3. Physiological Factors
   4. Quality of Life
3. Psychological Models of Experience of Dying
   1. The Stage Model
   2. The Task Model
   3. Continuing Bonds Model
4. The Dying Person's Experience
   1. Types of Death
   2. The Living-Dying Interval
   3. The Dying Trajectory
   4. Denial and Acceptance, Control, Suffering, and Hope
5. Family, Significant Others, and Caregivers
   1. Societal and Cultural Influences on the Family
   2. Coping with a Loved One's Terminal Illness
   3. Post-Death Coping
6. Physiological/Psychological Issues
   1. Experiences in the Medical System
   2. Changes in Perception of Self
   3. Pain and Suffering
   4. Cognitive Changes
   5. Psychosocial Developments

Chapter Four provides a discussion of controversial end-of-life decisions -- assisted suicide and euthanasia. After an overview and a review of legal considerations there is a summary of the research and experiences with assisted suicide and euthanasia both in the United States and in other countries.

IV. Chapter Four-Controversial End-of-Life Decisions

1. Overview
   1. Definitions
   2. Controversies
2. Legal Considerations
3. Research and Experience with Assisted Suicide and Euthanasia
   1. The Oregon Experience
   2. Research from Other Parts of the United States
   3. The Netherlands' Experience
   4. Assisted Suicide in Australia
   5. The Experience in Other Countries
   6. Difficulties in Interpreting Data
      1. Methodological Issues
      2. Variety of Assumptions and Perspectives
   7. Open Questions

Chapter Five reviews the research that has been done on attitudes about end-of-life issues. Data from members of the general public, older adults, people who are ill, and caregivers are provided. This material is then analyzed and interpretations are provided, given the limitations in the data.

V. Chapter Five--Attitudes About End-of-Life Issues

1. General Public
2. Older Adults
3. People Who are Ill
4. Caregivers
5. Analysis and Interpretation
   1. Methodological Problems
   2. Diversity Issues

Chapter Six gives an overview of issues for health care and mental health providers, including cultural aspects of the care system, financial matters, and ethical and legal constraints.

VI. Chapter Six--Provider Issues

1. Issues for Health Care Professionals
   1. Training and Culture
   2. Attitudes
   3. AMA's Positions on Various End-of-Life Decisions
2. Health Care System
   1. Reimbursement Issues
   2. Priorities
   3. Responsiveness to Changing Demographics
3. Mental Health Professionals
   1. Ethical and Legal Issues
      1. Case Law
      2. State Statutes
      3. APA Code of Ethics
   2. Attitudes
   3. Experience and Education

Chapter Seven delves more deeply into practice issues confronting psychologists. Emphasis is placed on issues that need to be considered for assessment when end-of-life decisions are being discussed and other considerations for psychologists who are providing clinical services to people who are dying and their loved ones.

VII. Chapter Seven--Practice Issues for the Psychologist

1. A. Assessment of End-of-Life Decisions
   1. Diagnosable Mental Disorders
      1. General Factors to Consider
      2. Anxiety Disorders
      3. Clinical Depression and Other Mood Disorders
      4. Delirium and Dementia
      5. Personality Disorders
      6. Substance Abuse
   2. Other Mental Health Issues
      1. Autonomy/Control
      2. Capacity to Make Decisions and to Give Informed Consent
      3. Existential Issues and Spiritual Beliefs
      4. Hopelessness
      5. Mourning/Grief/Loss
      6. Underlying Psychological Issues
   3. Interpersonal/Environmental Issues
      1. Being a Burden
      2. Cultural Factors
      3. Financial Variables
      4. Presence/Absence of Significant Others
      5. Pressure/Coercion
   4. Issues to Consider When Exploring End-of-Life Decisions
      1. Preliminary General Considerations
      2. Overview of Issues for Consideration
      3. Role of the Psychologist after the Review is Complete
      4. Use of Instruments when Reviewing End-of-Life Decisions
2. B. Providing Clinical Services
   1. Content
   2. Objectives for Intervention
   3. Necessary Perspectives
   4. Addressing Spiritual and Existential Issues/Values Clarification
   5. Couple/Family/Group Counseling
3. C. Other Important Clinical Roles
   1. Advocate
   2. Consultation-Liaison Professional
   3. Educator
   4. Multidisciplinary Team Member

Chapter Eight provides a discussion of three major areas: Education, researchm and policy. The first section reviews how end-of-life issues can be incorporated into undergraduate, graduate, and post-graduation education and training. The second section provides a set of research issues for psychologists who want to explore end-of-life issues through empirical work. The final section reviews how individual psychologists, state psychological associations, and the APA can influence policy on these matters.

VIII. Chapter Eight--Education, Research, and Policy Issues

1. Education and Training Issues
   1. Undergraduate
   2. Graduate
   3. Post-Doctorate and Continuing Education
   4. Learning from Other Disciplines
2. Research Issues for Psychologists
   1. Ethical Considerations
   2. Methodological Considerations
   3. Key Areas of Need
      1. The Dying Individual
         1. Psychopathology and the Desire for Death
         2. Assessment
         3. Ways of Dying
         4. Involvement of Psychologists
      2. Intimate Network
      3. Creation of New Outcomes Measures for Assessing Efficacy of Psychologists' Involvement
   4. Policy Issues for Psychologists
      1. Individual Psychologists
      2. State Psychological Associations
      3. American Psychological Association

Chapter Nine provides conclusions and recommendations for psychology as a discipline and for individual psychologists.

IX. Chapter Nine--Conclusions and Recommendations

1. Conclusions for Psychology as a Discipline
2. Recommendations for the APA Contained in the Report to the Board of Directors
3. Conclusions for Individual Psychologists
4. Recommendations for Psychologists Working in Areas Associated with the End of Life

X. References

XI. Glossary

XII. Appendix A: Advisory Committee Members Who Provided Feedback

XIII. Appendix B: Resource List

XIV. Appendix C: Annotated Bibliography

Introduction
Section 1 | Section 2 | Section 3 | Section 4
References
Appendix A | Appendix B | Appendix C
Appendix D | Appendix E | Appendix F
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