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Advance Care Planning - Leah Rogne


Year 2014



PrefaceAcknowledgmentsChapter 1 Introduction: A Matter of Life and DeathPLANNING FOR ENDINGSTHE PROMISE OF ADVANCE DIRECTIVESORGANIZATION OF THIS BOOKREFERENCESPart I Advance Care Planning: Promise and ChallengeIntroductionChapter 2 Planning for End-of-Life Care: Where Are We and How Did We Get Here?SETTING THE STAGEDefining Advance Directives and Advance Care PlanningAdvance DirectivesAdvance Care PlanningHow Did We Get Here: A Brief History of Advance Care PlanningThe Longevity RevolutionExpanding Medical TechnologyThe Consumer Movement and Advent of Advance DirectivesThe Legal Environment of Advance Care PlanningEthical Foundations of Advance Care PlanningPotential Benefits of Advance Care PlanningChallenges to Effective Advance Care PlanningUnderutilizationReluctance to Talk About Death and DyingLack of Awareness About Advance Directives and Advance Care PlanningDifficulties in Deciding on Specific TreatmentsInability of Surrogates to Predict Patient PreferencesLack of Health Care Provider Skills in CommunicationFocus on Autonomy and ControlThe Ideology of RescueTHE COMMUNICATION REVOLUTION IN ADVANCE CARE PLANNING: A NEW PATH FORWARDFrom Product to Process: From Advance Directives to Advance Care PlanningBringing the Community Back InCONCLUSION: WHERE DO WE GO FROM HERE?REFERENCESChapter 3 Advance Care Planning: Focus on Communication and Care Planning RatherBACKGROUNDINTRODUCTIONDISCUSSION: THE PROBLEMCONCLUSIONS: PROPOSED SOLUTIONSREFERENCESChapter 4 Barriers to Advance Care Planning: A Sociological PerspectiveTHE KNOWLEDGE SOCIETY AND THE CULTURE OF DECISION MAKINGRational KnowledgeProfessionalizationReliance on ExpertsExperts and Routine ActivitiesThe Attack on ProfessionsDeskilling in the Knowledge SocietyTHE SICK ROLEPerforming IllnessAdvance Care Planning and Trying to Get WellDISCUSSIONREFERENCESChapter 5 Advance Medical Care Planning: The Legal EnvironmentTHE CONTEMPORARY LEGAL ENVIRONMENTINFLUENCE OF THE LEGAL ENVIRONMENT ON END-OF-LIFE CARE AND ADVANCE MEDICAL PLANNINGOverview of Advance Medical PlanningProblems With Advance DirectivesTHE NEXT STEPS IN ADVANCE MEDICAL PLANNINGThe POLST Paradigm DefinedPOLST Strategic IssuesStoring and Retrieving POLST FormsPolicy Issues for Health Care InstitutionsCONCLUSIONREFERENCESChapter 6 Advance Care Planning and the Problem of OvertreatmentTHE PROBLEM OF OVERTREATMENTHistory of the ProblemHONESTY AND HOPEDEATH AND DYINGREFERENCESChapter 7 Religion, Spirituality, and Culture in Advance Care PlanningA STORY OF BELIEF AND END-OF-LIFE CARE DECISION MAKINGTHE IMPORTANCE OF RELIGION AND SPIRITUALITY IN ADVANCE CARE PLANNINGDISCUSSING RELIGIOUS AND SPIRITUAL ASPECTS OF ADVANCE CARE PLANNINGDEFINING RELIGION AND SPIRITUALITYSPIRITUAL ASSESSMENT AND ADVANCE CARE PLANNINGTHE MEETING OF SPIRITUALITY, RELIGION, AND CULTURECROSS-CULTURAL INFLUENCES AND ADVANCE CARE PLANNINGCONFLICTS WITH “WESTERN” MEDICAL SYSTEM VALUESNondisclosureBELIEF, PAIN, AND ADVANCE CARE PLANNINGRELIGIOUS PERSPECTIVES ON ADVANCE CARE PLANNING AND ADVANCE DIRECTIVESCONCLUSIONREFERENCESPart II Best Practices for Communicating About End-of-Life CareIntroductionChapter 8 It Ain't Easy: Making Life And Death Decisions Before The CrisisUNCERTAINTYAUTONOMY AND INTERDEPENDENCEConflicting AutonomiesVALUES AND GOALSCASE STUDIESSUMMARYREFERENCES Chapter 9 Advance Care Planning: Considerations for Practice With Older AdultsTRAJECTORIES OF DECLINE AT THE END OF LIFERECONCEPTUALIZING PLANNING IN ADVANCE FOR CAREMULTIPLE CARE CONSIDERATIONS BY DOMAINPsychological ConsiderationsSocial ConsiderationsCultural ConsiderationsSpiritual ConsiderationsMedical ConsiderationsPhysical ConsiderationsFinancial ConsiderationsBEHAVIORAL CHANGE MODEL FOR PLANNINGPersonality Styles Associated With Decision MakingCONCLUSIONREFERENCES Chapter 10 Worlds of Connection: Applying an Interdisciplinary Relational Model of Care© to Communicating About End of LifeDEATH IS NOT THE ENEMYBEYOND OBJECTIVITY, PATERNALISM, AND AUTONOMYA SHIFT TO RELATIONALITY: APPLYING THE INTERDISCIPLINARY MODEL OF CAREUNSPOKEN CLINICAL REALITIES: TRANSFERENCE, COUNTERTRANSFERENCE, AND COTRANSFERENCEReflective Practice: Discovering Countertransference and CotransferenceCOMPASSION IN THE CLINICAL RELATIONSHIPCompassionate CommunicationHOPE, DEATH, AND COMMUNICATION: REFLECTIONS THAT INFORM THE IRMOCYOUR WISH, MY COMMAND: FINDING SOLACE IN ADVANCE DIRECTIVESREFERENCESChapter 11 Conversations That Matter: Stories and MobilesTHE CHALLENGE OF PLANNING FOR END OF LIFEOUR EVOLVING FAMILY STORIESDEALING WITH DARK EMOTIONSREFLECTIONS ON LIFE AS WE WORK WITH OTHERSTHE IMPORTANCE OF CULTUREMOBILES AND SHATTERED GLASSCOPING WITH THE REALLY BIG STORMSTEWARDSHIP, JUSTICE, AND PROFESSIONAL ETHICSPERCEPTIONS OF SUFFERING AT THE EOLTHE PROFESSIONALS' OWN STORIESREFERENCESChapter 12 Advance Care Planning and Nursing Home Residents and Families: Lessons Inspired by TV Game ShowsBACKGROUNDThe Role of Contemporary Nursing HomesResident Health and Functional Status CharacteristicsFederal Laws Related to Advance Care Planning in Nursing HomesThe Social Support System of Nursing Home ResidentsWHAT CAN WE LEARN ABOUT ACP IN THE NURSING HOME FROM TV GAME SHOWS?Jeopardy: The Importance of Asking the Right QuestionThe Importance of Knowing Goals of CareWheel of Fortune: Don't Count on Controlling EverythingComplex Medical Characteristics of Nursing Home ResidentsCommunication Challenges in the Nursing Home SettingLack of a Seamless Health Care SystemLet's Make a Deal: The Importance of Recognizing an OpportunityASSETS OF THE NURSING HOME SETTINGHospiceThe Importance of Nursing Home StaffSUMMARYACKNOWLEDGMENTREFERENCESChapter 13 Watch Over Me: Therapeutic Conversations in Advanced DementiaPREDICTABLE CAREGIVING NEEDS OF PERSONS WITH DEMENTIANATURAL PROGRESSION OF DEMENTIATHE FAMILY JOURNEYOPPORTUNITIES FOR DECISION MAKING AND ADVANCE CARE PLANNINGWATCH OVER ME: THERAPEUTIC CONVERSATIONSPrepareCreate the SpaceSet the AgendaDeliver the Person With Dementia From AnonymityState the ObviousDetermine Understanding of IllnessIdentify HopeNormalize Feelings of Relief in GriefTailoring and Anticipatory GuidanceMaximum Conservative Treatment and CareDying for CPRThe Unasked QuestionAPPLYING THE PRINCIPLES OF WATCH OVER MESetting the AgendaIdentify HopeNormalize Feelings of Relief in GriefTailoring and Anticipatory GuidanceMaximum Conservative Treatment and CareDying for CPRThe Unasked QuestionSummaryCONCLUSIONREFERENCESChapter 14 On Writing One's Own Advance DirectiveDISCUSSION OF THE ABOVE ADVANCE DIRECTIVEBad Death/Dying PoorlyGood Death/Dying WellHeroic SupportNutritional SupportArrhythmiaVentilator / Respirator / Mechanical Ventilation / Breathing MachineDialysisCPRTerminal ConditionBrain Injury/PathologyHemiplegiaProgressive DementiaAphasiaHigh Spinal InjurySevere BurnsPart III Implementing Advance Care Planning: Model ProgramsREFERENCEChapter 15 Respecting Choices: An Evidence-Based Advance Care Planning Program With Proven Success and ReplicationHOW IS THE RESPECTING CHOICES APPROACH TO ADVANCE CARE PLANNING DIFFERENT FROM THE TYPICAL APPROACH TO ADVANCE DIRECTIVES?THE GOALS OF ADVANCE CARE PLANNING ARE DEFINEDADVANCE CARE PLANNING IS PERSON-CENTEREDTHE PROCESS OF ADVANCE CARE PLANNING INVOLVES UNDERSTANDING, REFLECTION, AND DISCUSSIONUnderstandingReflectionDiscussionA STAGED APPROACH TO ACPWHY HAS THE RESPECTING CHOICES APPROACH TO PLANNING WORKED WHEN OTHER APPROACHES HAVE FAILED?Key Element #1: Designing Systems to Support Advance Care PlanningKey Element #2: Advance Care Planning Facilitation Skills Education and TrainingKey Element #3: Community Engagement and EducationKey Element #4: Continuous Quality ImprovementCAN THE RESPECTING CHOICES MODEL BE SUCCESSFULLY REPLICATED?SUMMARYREFERENCESChapter 16 The Take Charge Partnership “Just Talk(s) About It:” A Model for Sustained Grassroots ActivismCOMING TOGETHERESTABLISHING OUR IDENTITYACHIEVING IDENTITYJUST TALK ABOUT ITTHE CONCLUSION ...TO OUR BEGINNINGREFERENCESChapter 17 The Coalition for Compassionate Care of CaliforniaBRIEF HISTORYPRIMARY FOCUS ON ADVANCE CARE PLANNINGPHILOSOPHICAL UNDERPINNINGSPUBLIC ENGAGEMENTNURSING HOMESPHYSICIAN ORDERS FOR LIFE-SUSTAINING TREATMENTThe Importance of Local LeadershipCULTURAL DIVERSITYDEVELOPMENTAL DISABILITIESFUTUREREFERENCESChapter 18 Passion, Persistence, and PenniesENGAGEMENTSummary of EngagementSYSTEM INFRASTRUCTUREResource DevelopmentPolicy and Medical OrdersSummary of System InfrastructureEDUCATIONSummary of EducationCONTINUOUS QUALITY IMPROVEMENTSummary of Continuous Quality ImprovementOVERCOMING CHALLENGESWhose 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?SUMMARYREFERENCES Part IV Systems Level Change: Charting a New Path for Dying, Death, and End-of-Life CareIntroductionChapter 19 Does the Nation's Survival Depend on a New End-of-Life Conversation?THE MAJOR KEY: RESCUE AS NATIONAL IDEOLOGYMinimizing the Dying in DeathCalculating ValueHealth Policy and End of Life (EOL) in the United StatesReforming Ideology, Reforming Worldview, Reforming Health CareTaking Comfort in ComplexityTHE MINOR KEY: PALLIATIVE CARE, THE VIRTUES OF CLASSICAL CITIZENSHIP, AND A NEW END-OF-LIFE CONVERSATIONPalliative CarePalliative Care and the VirtuesThe Centrality of Truth Telling or Parrhe–siaREFERENCESChapter 20 Inspiring Improvement and Leading ChangeLEADERSHIP AND GREAT TEAMSEffective LeadershipGreat TeamsWhen Great Teams Are Not EnoughQUALITY IMPROVEMENT AND LEADING LARGE-SCALE CHANGEQuality Improvement in End-of-Life CareThe Institute of Medicine Principles and Advance Care Planning“To Err Is Human”: Building a Safer Health System“The Quality Chasm”Improvement ScienceImprovement and the Institute for Healthcare ImprovementMaking Quality Improvement EasierMaking Quality Improvement DifficultFailure or Success?IMPLEMENTING LARGE-SCALE CHANGEDelivering Higher System PerformanceThe Conversation ProjectThe Leadership ChallengeSix Leadership Actions From Kabcenell and ConwayIdentifying Patients With Particular Needs: The Gold Standards FrameworkUniversal Positive ChangeThe Triple AimKotter's Change Management ToolsCONCLUSION: THE MORAL TESTLeadership and the Commitment to ChangeREFERENCESChapter 21 Advance Care Planning as a Public Health IssueWHAT DOES ADVANCE CARE PLANNING ASK OF US?THE PUBLIC HEALTH ROLES OF DEATH EDUCATION IN SUPPORTING ADVANCE CARE PLANNINGA HEALTH PROMOTION AND COMMUNITY ENGAGEMENT CONTEXT FOR ADVANCE CARE PLANNINGHOW PUBLIC HEALTH CONTEXTS ADDRESS CHALLENGES AND BARRIERS TO ADVANCE CARE PLANNINGTHE CHALLENGE OF FACING DEATH FOR AMERICAN PUBLIC HEALTHREFERENCES Part V Selected Resources on Advance Care Planning and End-of-Life CareNATIONAL INITIATIVESSTATE OR REGIONAL INITIATIVESPROFESSIONAL ASSOCIATIONSBOOKSJOURNALSOTHER
 
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