Appropriate care at the end of life
Authors: Van den Broeck Kris , Schmitz Olivier , Aujoulat Isabelle , Mistiaen Patriek , Friedel Marie , Genet Magali , Ricour Céline , Kohn Laurence , Wens Johan 
Published: January 2025

SCIENTIFIC REPORT .9 -- 1 INTRODUCTION 9 -- 1.1 GENERAL RESEARCH AIM 9 -- 1.2 POLICY RELEVANCE AND TARGET POPULATION .10 -- 1.3 RESEARCH QUESTIONS .10 -- 2 METHODOLOGY 11 -- 2.1 BUILDING UPON PREVIOUS WORK .11 -- 2.2 BELGIAN LITERATURE REVIEW .11 -- 2.2.1 Orientation of the study .11 -- 2.2.2 Search sources .11 -- 2.2.3 Search strategy .12 -- 2.2.4 In- and exclusion criteria and process 13 -- 2.2.5 Methodological assessment 13 -- 2.2.6 Data extraction 13 -- 2.2.7 Data synthesis 13 -- 2.3 ONLINE QUESTIONNAIRE 14 -- 2.3.1 Orientation of the study .14 -- 2.3.2 The questionnaire 14 -- 2.3.4 Data analysis 16 -- 2.4 QUALITATIVE FOLLOW-UP STUDY 17 -- 2.4.1 Orientation of the study .17 -- 2.4.2 Procedure .17 -- 2.4.3 Data analysis 18 -- 2.5 VALIDATION PROCEDURES 18 -- 2.6 ETHICAL APPROVAL 19 -- 2.7 OUTLINE OF THE REPORT .19 -- 3 BELGIAN LITERATURE SEARCH 19 -- 3.1 RESULTS 19 -- 3.1.1 Search results 19 -- 3.1.2 Terminology & definitions .20 -- 3.1.3 Prevalence 28 -- 3.1.4 Determinants and contributing factors 30 -- 3.1.5 Consequences 34 -- 3.1.6 Interventions 34 -- 3.2 CONCLUSIONS FROM THE LITERATURE REVIEW 36 -- 4.1 PRECEDING NOTES 38 -- 4.2 DESCRIPTION OF THE RESPONDENTS 41 -- 4.2.1 Description of the total eligible sample .41 -- 4.2.2 Sample descriptives by the perspective respondents adopted.42 -- 4.2.3 More information about respondents with a background in care .44 -- 4.3 CIRCUMSTANCES OF END OF LIFE CARE 44 -- 4.4 OPINIONS ABOUT AND ATTITUDES TOWARDS END OF LIFE CARE .46 -- 4.4.1 Who is responsible for inappropriate care? 46 -- 4.4.2 Opinions about and attitudes towards end of life care 49 -- 4.4.3 Balanced involvement in end of life care? 51 -- 4.4.4 Advance care planning regarding end of life care 53 -- 4.4.5 Preferences in decision making about end of life care .57 -- 5 QUALITATIVE ANALYSES 57 -- 5.1 CHAPTER OUTLINE AND AVAILABLE DATA 57 -- 5.1.1 Chapter outline: Three research questions .57 -- 5.1.2 Data and respondents 57 -- 5.2 RESEARCH QUESTION 1: DEFINITION OF (IN)APPROPRIATE CARE AT THE END OF LIFE 60 -- 5.2.1 Procedure .60 -- 5.2.2 Qualitative analysis of the online questionnaire 60 -- 5.2.3 Supplementary analyses of the qualitative follow-up study 66 -- 5.2.4 Conclusion: one general definition, different accents 81 -- 5.3 RESEARCH QUESTION 2: CAUSES AND MECHANISMS UNDERLYING (IN)APPROPRIATE CARE AT THE END OF LIFE 83 -- 5.3.1 Procedure .83 -- 5.3.2 Qualitative analysis of the online questionnaire 84 -- 5.3.3 Supplementary analyses of the qualitative follow-up study 96 -- 5.3.4 Conclusion: causes and mechanisms underlying (in)appropriate end of life care 117 -- 5.4 RESEARCH QUESTION 3: SOLUTIONS FOR AND PREVENTION OF INAPPROPRIATE END OF LIFE CARE . 118 -- 5.4.1 Talking, talking, talking, and listening, listening, listening 118 -- 5.4.2 Training for health care practitioners . 119 -- 5.4.3 Organisation of care 120 -- 5.4.4 Guidance regarding ethical issues 121 -- 6 GENERAL DISCUSSION 122 -- 6.1 SUMMARY OF FINDINGS . 122 -- 6.1.1 Definition of (in)appropriate end of life care 122 -- 6.1.2 Causes and mechanisms underlying (in)appropriate end of life care 123 -- 6.1.3 Solutions for and measures to prevent inappropriate care . 124 -- 6.1.4 The weight of our findings 124 -- 6.2 LIMITATIONS 127 -- 6.3 DIRECTIVES FOR FURTHER RESEARCH . 129 -- EFERENCES . 131 -- APPENDICES 148 -- APPENDIX 1. THE QUESTIONNAIRE 148 -- APPENDIX 1.1. DUTCH QUESTIONNAIRE 148 -- APPENDIX 1.2. FRENCH QUESTIONNAIRE . 163 -- APPENDIX 2. TEMPLATE USED TO ANALYSE THE QUALITATIVE DATA COLLECTED WITH -- THE QUESTIONNAIRE 178 -- APPENDIX 3. TOPICS INVESTIGATED DURING THE QUALITATIVE FOLLOW-UP STUDY 179 -- APPENDIX 4. ADDITIONAL QUANTITATIVE DATA AND ANALYSES . 185 -- APPENDIX 5. CHARACTERISTICS OF RESPONDENTS INVOLVED IN THE QUALITATIVE FOLLOW-UP STUDY 200