Assessment and support of decisional capacity in persons with dementia or mental health problems
Authors: Vinck Imgard , Benahmed Nadia , Dauvrin Marie , Desomer Anja , Cornelis Justien , Jonckheer Pascale , Mistiaen Patriek 
Published: January 2025

1 INTRODUCTION 13 -- 2 SCOPE OF THE STUDY 15 -- 3 RESEARCH QUESTIONS 17 -- 3.1 RESEARCH QUESTION 1: WHAT ARE THE DIFFERENT APPROACHES TOWARDS DECISIONAL CAPACITY, ITS ASSESSMENT AND SUPPORT? 17 -- 3.2 RESEARCH QUESTION 2: HOW DOES BELGIAN LEGISLATION DEAL WITH DECISIONAL CAPACITY AND ITS ASSESSMENT AND SUPPORT? 17 -- 3.3 RESEARCH QUESTION 3: WHAT ARE THE NEEDS OF (HEALTH)CARE PROFESSIONALS (IN THE DOMAIN OF DEMENTIA OR MENTAL HEALTH PROBLEMS) IN THE ASSESSMENT AND SUPPORT OF DECISIONAL CAPACITY? 18 -- 3.4 RESEARCH QUESTION 4: WHAT ARE THE NEEDS OF THE PERSONS WITH MENTAL HEALTH PROBLEMS OR DEMENTIA IN THE ASSESSMENT AND SUPPORT OF DECISIONAL CAPACITY? 18 -- 4 METHODOLOGY 18 -- 5 DECISIONAL CAPACITY IN SCIENTIFIC LITERATURE 19 -- 5.1 OBJECTIVE 19 -- 5.2 METHODOLOGY 19 -- 5.2.1 Search strategy 19 -- 5.2.2 Selection criteria for in- or exclusion 19 -- 5.2.3 Data to retrieve / analysis 21 -- 5.3 RESULTS 22 -- 5.3.1 Description of the included articles. 22 -- 5.3.2 Presentation of the findings 22 -- 5.4 PART 1 - TERMINOLOGY 22 -- 5.4.1 Decision-making : a complex phenomenon 22 -- 5.4.2 Decision-making in the medical context 23 -- 5.4.3 Different wordings and four elements 23 -- 5.4.4 Decisional capacity: decision and time specific 30 -- 5.5 PART 2 - PATHOLOGIES AS SOURCE OF DECISIONAL CAPACITY IMPAIRMENT 32 -- 5.5.1 Dementia 33 -- 5.5.2 Brain tumors and other neurological cancers 33 -- 5.5.3 Schizophrenia spectrum and other psychotic disorders 34 -- 5.5.4 Bipolar and related disorders 35 -- 5.5.5 Depression 35 -- 5.5.6 Autism spectrum disorders 36 -- 5.6 PART 3 - ASSESSING DECISIONAL CAPACITY 37 -- 5.6.1 When is a formal assessment needed? 37 -- 5.6.2 How can an assessment be performed? 41 -- 5.6.3 Who should be designed to be assessor? 51 -- 5.6.4 Which barriers are linked to this assessment? 52 -- 5.6.5 Which facilitators are linked to this assessment? 57 -- 5.6.6 Which recommendations have already been formulated regarding decisional capacity assessment? 65 -- 5.7 PART 4  IMPACT OF DECISIONAL INCAPACITY: AN ETHICAL QUESTION 69 -- 5.7.1 Discrimination and preconceptions 70 -- 5.7.2 Autonomy versus Paternalism 71 -- 5.7.3 Strategies for improving or maintaining the decisional capacity 72 -- 5.8 PART 5  SUPPORTED DECISION-MAKING PATHWAY 73 -- 5.8.1 Concept 74 -- 5.8.2 When has a supported decision-making pathway to be proposed ? 74 -- 5.8.3 How can a supported decision-making pathway be organized? 75 -- 5.8.4 Who has to be involved in a supported decision-making pathway? 78 -- 5.8.5 Which benefits are described with a supported decision-making pathway? 79 -- 5.8.6 Which barriers are linked to the supported decision-making pathway? 79 -- 5.8.7 Which facilitators are linked to the supported decision-making pathway 82 -- 5.8.8 Which recommendations have already been formulated regarding supported decisionmaking pathway? 84 -- 5.9 PART 6  ADVANCE DECISION 89 -- 5.9.1 Concepts 89 -- 5.9.2 When should advance decision be proposed? 90 -- 5.9.3 How is advance decision elaborated? 92 -- 5.9.4 Who has to be involved in advance decision pathway? 93 -- 5.9.5 Which benefits are described with advance decision? 95 -- 5.9.6 Which barriers are linked to the advance decision pathway? 97 -- 5.9.7 Which facilitators are linked to the advance decision pathway? 103 -- 5.9.8 Which recommendations have already been formulated regarding advance decision? 107 -- 5.10 PART 7  SURROGATE DECISION-MAKING PATHWAY: SUBSTITUTED JUDGEMENT AND BEST-INTEREST APPROACH 111 -- 5.10.1 Concepts 111 -- 5.10.2 When a surrogate decision-making pathway should be proposed? 112 -- 5.10.3 How is a surrogate decision-making pathway organized? 113 -- 5.10.4 Who has to be involved in the surrogate decision-making pathway? 116 -- 5.10.5 Which barriers are linked to the surrogate decision-making pathway?. 117 -- 5.10.6 Which facilitators are linked to the surrogate decision-making pathway? 122 -- 5.10.7 Which recommendations have already been formulated regarding surrogate decisionmaking pathway. 125 -- 5.11 LIMITATIONS OF THIS LITERATURE REVIEW 129 -- 5.12 FUTURE RESEARCH 130 -- 5.12.1 Assessment 130 -- 5.12.2 Supported decision-making 131 -- 5.12.3 Advance decision 131 -- 5.12.4 Surrogate decision-making 131 -- 5.12.5 HCPs Training and support 131 -- 6 DECISIONAL CAPACITY AND THE LAW 132 -- 6.1 OBJECTIVE 132 -- 6.2 METHODOLOGY 132 -- 6.3 PART 1 - DECISIONAL CAPACITY: TERMINOLOGY, INTERPRETATION AND ASSESSMENT 133 -- 6.3.1 Terminology 133 -- 6.3.2 The capabilities required to have decisional capacity 134 -- 6.3.3 The assessment of decisional capacity 138 -- 6.4 PART 2 - CONSEQUENCES OF DECISIONAL INCAPACITY: SUBSTITUTE DECISIONMAKING IN THE EXERCISE OF PATIENTS RIGHTS 149 -- 6.4.1 Who is the substitute decision-maker in charge of exercising patients rights? 150 -- 6.4.2 How should a substitute decision-maker decide when exercising patients rights? 155 -- 6.4.3 The value of action through which an incapacitated patient appears to oppose treatment. 156 -- 6.4.4 Support in case of reduced decisional capacity? 157 -- 6.5 PART 3 DECISIONAL CAPACITY IN SPECIFIC LEGISLATION: THE EXAMPLES OF EUTHANASIA, ORGAN DONATION AND MEDICAL EXPERIMENTS 160 -- 6.5.1 Decisional capacity and euthanasia 161 -- 6.5.2 Decisional capacity and experiments on human beings 166 -- 6.5.3 Decisional capacity and organ donation 168 -- 6.6 PART 4 - ADVANCE CARE PLANNING 171 -- 6.6.1 Types of written advance directives 172 -- 6.6.2 Crisis planning for patients with a psychiatric disorder 176 -- 6.7 PART 5 - ADMISSION OF A CARE USER IN A RESIDENTIAL CARE SETTING 178 -- 6.7.1 Admission to a residential care centre (or home replacement environment) 178 -- 6.7.2 Admission in a psychiatric facility 179 -- 6.7.3 Decisional incapacity and day-to-day decisions in a residential care context 183 -- 6.8 PART 6 - THE ROLE OF THE UNITED NATIONS CONVENTION ON THE RIGHTS OF PERSONS WITH DISABILITIES 185 -- 6.9 LIMITATIONS 194 -- 7 PROFESSIONALS PERCEPTIONS RELATED TO DECISIONAL CAPACITY 195 -- 7.1 OBJECTIVE 195 -- 7.2 METHODOLOGY 195 -- 7.2.1 Participants 195 -- 7.2.2 Data collection 196 -- 7.2.3 Data analysis 198 -- 7.3 PART 1 -TERMINOLOGY USED BY PROFESSIONALS AROUND DECISIONAL CAPACITY 199 -- 7.3.1 Many synonyms/terms are used 199 -- 7.4 PART 2 - CONTENT AND CHARACTERISTICS OF DECISIONAL CAPACITY 201 -- 7.4.1 Composing elements of decisional capacity 201 -- 7.4.2 Decisional capacity, a relative concept 202 -- 7.4.3 Decisional capacity is task/context-specific 202 -- 7.5 PART 3 - ASSESSMENT OF DECISIONAL CAPACITY: CHARACTERISTICS, BARRIERS AND FACILITATORS, METHODS AND CONTEXT 203 -- 7.5.1 Focus on the decision-making process, not on the ultimate decision 203 -- 7.5.2 Standards and modalities for assessment depend on the severity of the pathology and the consequences of the decision for the patients health 207 -- 7.5.3 Methods for assessing the decisional capacity 207 -- 7.5.4 When (explicitly) evaluating decisional capacity? 210 -- 7.5.5 Particularities to certain types of mental health problems 210 -- 7.5.6 The impact of the personality and the social context of the patient 211 -- 7.5.7 The (possible) balance of power between the patient and physicians 212 -- 7.5.8 Place of the changing identity/values/preferences 212 -- 7.6 PART 4 - SUPPORTING THE PATIENTS IN THEIR DECISIONAL CAPACITY 214 -- 7.7 PART 5 - NEED FOR GUIDANCE FOR PROFESSIONALS 215 -- 7.8 PART 6 - NEED FOR FEEDBACK TO THE PATIENT 216 -- 7.9 PART 7 - ADVANCE CARE PLANNING 217 -- 7.9.1 Opportunities and limits of advance care planning 217 -- 7.9.2 When initiating advance care planning? 218 -- 7.9.3 Who should initiate/be involved in the process? 219 -- 7.10 PART 8 - CRISIS PLANNING FOR PERSONS WITH PSYCHIATRIC PROBLEMS 221 -- 7.11 LIMITATIONS 221 -- 8 PATIENTS PERSPECTIVES ON DECISIONAL CAPACITY 222 -- 8.1 OBJECTIVE 222 -- 8.2 METHODOLOGY 222 -- 8.2.2 Data analysis 225 -- 8.2.3 Ethical aspects 225 -- 8.3 RESULTS 226 -- 8.3.1 Presentation of the participants 226 -- 8.3.2 Presentation of the findings 227 -- 8.4 PART 1 - DECISIONAL CAPACITY AND DECISIONS ABOUT HEALTH CARE 228 -- 8.4.1 Definition/characteristics of the decisional capacity 228 -- 8.4.2 Factors influencing decisional capacity related to health care 229 -- 8.4.3 Patient reported experiences of exerting their decisional capacity 239 -- 8.5 PART 2 - EVALUATION OF THE (IN)CAPACITY 245 -- 8.5.1 Methods to assess the capacity of the patients 245 -- 8.5.2 When should the decisional capacity be assessed? 246 -- 8.5.3 Actors of the evaluation 248 -- 8.5.4 Communication of the results of the evaluation 249 -- 8.5.5 Consequences of the evaluation 249 -- 8.6 PART 3 - SOLUTIONS TO RESTORE AND MAINTAIN DECISIONAL CAPACITY 250 -- 8.6.1 At patient level 250 -- 8.6.2 At institutional level 255 -- 8.6.3 At political level 256 -- 8.7 LIMITATIONS OF THE ANALYSIS AND POTENTIAL BIAS 258 -- 9 DISCUSSION AND CONCLUSIONS 260 -- 9.1 NO CLARITY IN TERMINOLOGY AND DEFINITION OF DECISIONAL CAPACITY 260 -- 9.2 SHIFT FROM SUBSTITUTED-DECISION MAKING TO SUPPORTED-DECISION MAKING? 262 -- 9.3 TOWARDS A MORE PROMINENT ROLE FOR SUPPORTED DECISION-MAKING IN BELGIUM? 264 -- 9.4 ELEMENTS TO STRENGTHEN SUPPORTED DECISION  MAKING 265 -- 9.4.1 Foresee more (types of) support 265 -- 9.4.2 Provide training for patients and support persons 267 -- 9.4.3 Provide training for professionals 268 -- 9.4.4 Manage medical barriers for decisional capacity 268 -- 9.4.5 Facilitate advance care planning 269 -- 9.5 ELEMENTS TO FACILITATE DECISIONAL CAPACITY ASSESSMENTS 272 -- 9.5.1 Guidance on how to deal with decisional capacity (assessments) for healthcare professionals 273 -- 9.5.2 Provide support in the assessment process 275 -- 9.5.3 Provide training, intervision and supervision for professionals 275 -- 9.6 ORGANISING SUBSTITUTE DECISION-MAKING OF PATIENTS IN A COHERENT WAY 276 -- 9.7 FORESEE GUARANTEES RELATED TO COERCION AND OPPOSITION OF PATIENTS 277 -- 9.8 OVERALL NEED FOR SUPPORT MEASURES EMBEDDED IN AN ORGANIZATIONAL AND LEGAL FRAMEWORK TO OPTIMIZE THE PROCESS OF ASSESSING, SUPPORTING AND RESTORING DECISIONAL CAPACITY 278 -- APPENDICES 279 -- APPENDIX 1. LITERATURE SEARCH STRATEGIES 279 -- APPENDIX 1.1. SEARCH STRATEGY 279 -- APPENDIX 1.2. REASONS OF EXCLUSION OF 13 ARTICLES 281 -- APPENDIX 1.3. SUCCINCT DESCRIPTION OF THE 76 INCLUDED ARTICLES 283 -- APPENDIX 1.4. INSTRUMENTS FOR DECISION-MAKING ASSESSMENT. 294 -- APPENDIX 2. STATEMENTS AND CASES OF THE PROFESSIONAL FORUM 300 -- APPENDIX 3. INTERVIEW GUIDE 308 -- APPENDIX 3.1. INTRODUCTION 308 -- APPENDIX 3.2. QUESTIONNAIRE IN FRENCH 309 -- APPENDIX 3.3. TOPIC GUIDE IN DUTCH 315 -- REFERENCES 324