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