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Advance Care Planning
Preface
Acknowledgments
PLANNING FOR ENDINGS
THE PROMISE OF ADVANCE DIRECTIVES
ORGANIZATION OF THIS BOOK
REFERENCES
I Advance Care Planning: Promise and Challenge
Introduction
Planning for End-of-Life Care: Where Are We and How Did We Get Here?
SETTING THE STAGE
Defining Advance Directives and Advance Care Planning
Advance Directives
Advance Care Planning
How Did We Get Here: A Brief History of Advance Care Planning
The Longevity Revolution
Expanding Medical Technology
The Consumer Movement and Advent of Advance Directives
The Legal Environment of Advance Care Planning
Ethical Foundations of Advance Care Planning
Potential Benefits of Advance Care Planning
Challenges to Effective Advance Care Planning
Underutilization
Reluctance to Talk About Death and Dying
Lack of Awareness About Advance Directives and Advance Care Planning
Difficulties in Deciding on Specific Treatments
Inability of Surrogates to Predict Patient Preferences
Lack of Health Care Provider Skills in Communication
Focus on Autonomy and Control
The Ideology of Rescue
THE COMMUNICATION REVOLUTION IN ADVANCE CARE PLANNING: A NEW PATH FORWARD
From Product to Process: From Advance Directives to Advance Care Planning
Bringing the Community Back In
CONCLUSION: WHERE DO WE GO FROM HERE?
REFERENCES
Advance Care Planning: Focus on Communication and Care Planning Rather
BACKGROUND
INTRODUCTION
DISCUSSION: THE PROBLEM
CONCLUSIONS: PROPOSED SOLUTIONS
REFERENCES
Barriers to Advance Care Planning: A Sociological Perspective
THE KNOWLEDGE SOCIETY AND THE CULTURE OF DECISION MAKING
Rational Knowledge
Professionalization
Reliance on Experts
Experts and Routine Activities
The Attack on Professions
Deskilling in the Knowledge Society
THE SICK ROLE
Performing Illness
Advance Care Planning and Trying to Get Well
DISCUSSION
REFERENCES
Advance Medical Care Planning: The Legal Environment
THE CONTEMPORARY LEGAL ENVIRONMENT
INFLUENCE OF THE LEGAL ENVIRONMENT ON END-OF-LIFE CARE AND ADVANCE MEDICAL PLANNING
Overview of Advance Medical Planning
Problems With Advance Directives
THE NEXT STEPS IN ADVANCE MEDICAL PLANNING
The POLST Paradigm Defined
POLST Strategic Issues
Storing and Retrieving POLST Forms
Policy Issues for Health Care Institutions
CONCLUSION
REFERENCES
Advance Care Planning and the Problem of Overtreatment
THE PROBLEM OF OVERTREATMENT
History of the Problem
HONESTY AND HOPE
DEATH AND DYING
REFERENCES
Religion, Spirituality, and Culture in Advance Care Planning
A STORY OF BELIEF AND END-OF-LIFE CARE DECISION MAKING
THE IMPORTANCE OF RELIGION AND SPIRITUALITY IN ADVANCE CARE PLANNING
DISCUSSING RELIGIOUS AND SPIRITUAL ASPECTS OF ADVANCE CARE PLANNING
DEFINING RELIGION AND SPIRITUALITY
SPIRITUAL ASSESSMENT AND ADVANCE CARE PLANNING
THE MEETING OF SPIRITUALITY, RELIGION, AND CULTURE
CROSS-CULTURAL INFLUENCES AND ADVANCE CARE PLANNING
CONFLICTS WITH “WESTERN” MEDICAL SYSTEM VALUES
Nondisclosure
BELIEF, PAIN, AND ADVANCE CARE PLANNING
RELIGIOUS PERSPECTIVES ON ADVANCE CARE PLANNING AND ADVANCE DIRECTIVES
CONCLUSION
REFERENCES
II Best Practices for Communicating About End-of-Life Care
Introduction
It Ain't Easy: Making Life And Death Decisions Before The Crisis
UNCERTAINTY
AUTONOMY AND INTERDEPENDENCE
Conflicting Autonomies
VALUES AND GOALS
CASE STUDIES
SUMMARY
REFERENCES
Advance Care Planning: Considerations for Practice With Older Adults
TRAJECTORIES OF DECLINE AT THE END OF LIFE
RECONCEPTUALIZING PLANNING IN ADVANCE FOR CARE
MULTIPLE CARE CONSIDERATIONS BY DOMAIN
Psychological Considerations
Social Considerations
Cultural Considerations
Spiritual Considerations
Medical Considerations
Physical Considerations
Financial Considerations
BEHAVIORAL CHANGE MODEL FOR PLANNING
Personality Styles Associated With Decision Making
CONCLUSION
REFERENCES
Worlds of Connection: Applying an Interdisciplinary Relational Model of Care© to Communicating About End of Life
DEATH IS NOT THE ENEMY
BEYOND OBJECTIVITY, PATERNALISM, AND AUTONOMY
A SHIFT TO RELATIONALITY: APPLYING THE INTERDISCIPLINARY MODEL OF CARE
UNSPOKEN CLINICAL REALITIES: TRANSFERENCE, COUNTERTRANSFERENCE, AND COTRANSFERENCE
Reflective Practice: Discovering Countertransference and Cotransference
COMPASSION IN THE CLINICAL RELATIONSHIP
Compassionate Communication
HOPE, DEATH, AND COMMUNICATION: REFLECTIONS THAT INFORM THE IRMOC
YOUR WISH, MY COMMAND: FINDING SOLACE IN ADVANCE DIRECTIVES
REFERENCES
Conversations That Matter: Stories and Mobiles
THE CHALLENGE OF PLANNING FOR END OF LIFE
OUR EVOLVING FAMILY STORIES
DEALING WITH DARK EMOTIONS
REFLECTIONS ON LIFE AS WE WORK WITH OTHERS
THE IMPORTANCE OF CULTURE
MOBILES AND SHATTERED GLASS
COPING WITH THE REALLY BIG STORM
STEWARDSHIP, JUSTICE, AND PROFESSIONAL ETHICS
PERCEPTIONS OF SUFFERING AT THE EOL
THE PROFESSIONALS' OWN STORIES
REFERENCES
Advance Care Planning and Nursing Home Residents and Families: Lessons Inspired by TV Game Shows
BACKGROUND
The Role of Contemporary Nursing Homes
Resident Health and Functional Status Characteristics
Federal Laws Related to Advance Care Planning in Nursing Homes
The Social Support System of Nursing Home Residents
WHAT CAN WE LEARN ABOUT ACP IN THE NURSING HOME FROM TV GAME SHOWS?
Jeopardy: The Importance of Asking the Right Question
The Importance of Knowing Goals of Care
Wheel of Fortune: Don't Count on Controlling Everything
Complex Medical Characteristics of Nursing Home Residents
Communication Challenges in the Nursing Home Setting
Lack of a Seamless Health Care System
Let's Make a Deal: The Importance of Recognizing an Opportunity
ASSETS OF THE NURSING HOME SETTING
Hospice
The Importance of Nursing Home Staff
SUMMARY
ACKNOWLEDGMENT
REFERENCES
Watch Over Me: Therapeutic Conversations in Advanced Dementia
PREDICTABLE CAREGIVING NEEDS OF PERSONS WITH DEMENTIA
NATURAL PROGRESSION OF DEMENTIA
THE FAMILY JOURNEY
OPPORTUNITIES FOR DECISION MAKING AND ADVANCE CARE PLANNING
WATCH OVER ME: THERAPEUTIC CONVERSATIONS
Prepare
Create the Space
Set the Agenda
Deliver the Person With Dementia From Anonymity
State the Obvious
Determine Understanding of Illness
Identify Hope
Normalize Feelings of Relief in Grief
Tailoring and Anticipatory Guidance
Maximum Conservative Treatment and Care
Dying for CPR
The Unasked Question
APPLYING THE PRINCIPLES OF WATCH OVER ME
Setting the Agenda
Identify Hope
Normalize Feelings of Relief in Grief
Tailoring and Anticipatory Guidance
Maximum Conservative Treatment and Care
Dying for CPR
The Unasked Question
Summary
CONCLUSION
REFERENCES
On Writing One's Own Advance Directive
DISCUSSION OF THE ABOVE ADVANCE DIRECTIVE
Bad Death/Dying Poorly
Good Death/Dying Well
Heroic Support
Nutritional Support
Arrhythmia
Ventilator / Respirator / Mechanical Ventilation / Breathing Machine
Dialysis
CPR
Terminal Condition
Brain Injury/Pathology
Hemiplegia
Progressive Dementia
Aphasia
High Spinal Injury
Severe Burns
III Implementing Advance Care Planning: Model Programs
REFERENCE
Respecting Choices: An Evidence-Based Advance Care Planning Program With Proven Success and Replication
HOW IS THE RESPECTING CHOICES APPROACH TO ADVANCE CARE PLANNING DIFFERENT FROM THE TYPICAL APPROACH TO ADVANCE DIRECTIVES?
THE GOALS OF ADVANCE CARE PLANNING ARE DEFINED
ADVANCE CARE PLANNING IS PERSON-CENTERED
THE PROCESS OF ADVANCE CARE PLANNING INVOLVES UNDERSTANDING, REFLECTION, AND DISCUSSION
Understanding
Reflection
Discussion
A STAGED APPROACH TO ACP
WHY HAS THE RESPECTING CHOICES APPROACH TO PLANNING WORKED WHEN OTHER APPROACHES HAVE FAILED?
Key Element #1: Designing Systems to Support Advance Care Planning
Key Element #2: Advance Care Planning Facilitation Skills Education and Training
Key Element #3: Community Engagement and Education
Key Element #4: Continuous Quality Improvement
CAN THE RESPECTING CHOICES MODEL BE SUCCESSFULLY REPLICATED?
SUMMARY
REFERENCES
The Take Charge Partnership “Just Talk(s) About It:” A Model for Sustained Grassroots Activism
COMING TOGETHER
ESTABLISHING OUR IDENTITY
ACHIEVING IDENTITY
JUST TALK ABOUT IT
THE CONCLUSION ...TO OUR BEGINNING
REFERENCES
The Coalition for Compassionate Care of California
BRIEF HISTORY
PRIMARY FOCUS ON ADVANCE CARE PLANNING
PHILOSOPHICAL UNDERPINNINGS
PUBLIC ENGAGEMENT
NURSING HOMES
PHYSICIAN ORDERS FOR LIFE-SUSTAINING TREATMENT
The Importance of Local Leadership
CULTURAL DIVERSITY
DEVELOPMENTAL DISABILITIES
FUTURE
REFERENCES
Passion, Persistence, and Pennies
ENGAGEMENT
Summary of Engagement
SYSTEM INFRASTRUCTURE
Resource Development
Policy and Medical Orders
Summary of System Infrastructure
EDUCATION
Summary of Education
CONTINUOUS QUALITY IMPROVEMENT
Summary of Continuous Quality Improvement
OVERCOMING CHALLENGES
Whose Role Is It Anyway?
How Is Information and Education Provided to Almost 30,000 Staff?
Who Has the Time?
How Do You Reach the Physician Group and Move From a Curative Medical Model of Care?
SUMMARY
REFERENCES
IV Systems Level Change: Charting a New Path for Dying, Death, and End-of-Life Care
Introduction
Does the Nation's Survival Depend on a New End-of-Life Conversation?
THE MAJOR KEY: RESCUE AS NATIONAL IDEOLOGY
Minimizing the Dying in Death
Calculating Value
Health Policy and End of Life (EOL) in the United States
Reforming Ideology, Reforming Worldview, Reforming Health Care
Taking Comfort in Complexity
THE MINOR KEY: PALLIATIVE CARE, THE VIRTUES OF CLASSICAL CITIZENSHIP, AND A NEW END-OF-LIFE CONVERSATION
Palliative Care
Palliative Care and the Virtues
The Centrality of Truth Telling or Parrhe–sia
REFERENCES
Inspiring Improvement and Leading Change
LEADERSHIP AND GREAT TEAMS
Effective Leadership
Great Teams
When Great Teams Are Not Enough
QUALITY IMPROVEMENT AND LEADING LARGE-SCALE CHANGE
Quality Improvement in End-of-Life Care
The Institute of Medicine Principles and Advance Care Planning
“To Err Is Human”: Building a Safer Health System
“The Quality Chasm”
Improvement Science
Improvement and the Institute for Healthcare Improvement
Making Quality Improvement Easier
Making Quality Improvement Difficult
Failure or Success?
IMPLEMENTING LARGE-SCALE CHANGE
Delivering Higher System Performance
The Conversation Project
The Leadership Challenge
Six Leadership Actions From Kabcenell and Conway
Identifying Patients With Particular Needs: The Gold Standards Framework
Universal Positive Change
The Triple Aim
Kotter's Change Management Tools
CONCLUSION: THE MORAL TEST
Leadership and the Commitment to Change
REFERENCES
Advance Care Planning as a Public Health Issue
WHAT DOES ADVANCE CARE PLANNING ASK OF US?
THE PUBLIC HEALTH ROLES OF DEATH EDUCATION IN SUPPORTING ADVANCE CARE PLANNING
A HEALTH PROMOTION AND COMMUNITY ENGAGEMENT CONTEXT FOR ADVANCE CARE PLANNING
HOW PUBLIC HEALTH CONTEXTS ADDRESS CHALLENGES AND BARRIERS TO ADVANCE CARE PLANNING
THE CHALLENGE OF FACING DEATH FOR AMERICAN PUBLIC HEALTH
REFERENCES
V Selected Resources on Advance Care Planning and End-of-Life Care
NATIONAL INITIATIVES
STATE OR REGIONAL INITIATIVES
PROFESSIONAL ASSOCIATIONS
BOOKS
JOURNALS
OTHER
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