Propositions for reinforcing and expanding the Belgian palliative care offer : the right care at the right moment at the right place

Abstract

333 p.ill.,LIST OF FIGURES .8 -- LIST OF TABLES 11 -- LIST OF ABBREVIATIONS 14 -- SCIENTIFIC REPORT 17 -- 1 INTRODUCTION 17 -- 1.1 CONTEXT 17 -- 1.2 HISTORY OF PALLIATIVE CARE IN BELGIUM 19 -- 1.3 WHY THIS PROJECT? 20 -- 1.3.1 A missing link in the Belgian palliative care landscape .20 -- 1.3.2 An ethical duty to patient preferences 21 -- 1.4 DEFINITIONS, OBJECTIVE, SCOPE AND RESEARCH QUESTIONS .26 -- 1.4.1 Definitions 26 -- 1.4.2 Objective 30 -- 1.4.3 Scope .31 -- 1.4.4 Research questions 32 -- 2 METHODS 34 -- 2.1 DESK RESEARCH & SITE VISITS 36 -- 2.1.1 Identification of the initiatives .36 -- 2.1.2 Site visits 36 -- 2.1.3 Data analysis 37 -- 2.1.4 Limitations 37 -- 2.2 LITERATURE REVIEWS 38 -- 2.2.1 Effectiveness of palliative care services 38 -- 2.2.2 Acceptability of palliative care services .40 -- 2.2.3 Limitations 41 -- 2.3 INTERNATIONAL COMPARISON .42 -- 2.3.1 Selection of the countries .42 -- 2.3.2 Data collection and analysis 45 -- 2.3.3 Validation process 45 -- 2.3.4 Limitations 45 -- 2.4 STAKEHOLDER CONSULTATION 45 -- 2.4.1 Identification of the stakeholders .46 -- 2.4.2 Online consultations of organisations 48 -- 2.4.3 Workshops with representatives of patients 50 -- 2.4.4 Stakeholder meetings 52 -- 2.4.5 Ad hoc consultations 53 -- 2.4.6 Limitations 53 -- 3 WHAT IS THE EFFECTIVENESS AND ACCEPTABILITY OF PALLIATIVE CARE? 55 -- 3.1 AIMS OF THE LITERATURE REVIEWS 56 -- 3.2 EFFECTIVENESS ANALYSIS OF COMMUNITY-BASED PALLIATIVE CARE SERVICES AND INTERVENTIONS 56 -- 3.2.1 Effectiveness of services and interventions per setting 56 -- 3.2.2 Effectiveness of interventions promoting collaboration between primary and secondary care 63 -- 3.2.3 Effectiveness of specialised community-based palliative care services and interventions 70 -- 3.2.4 Cost-effectiveness and resource utilisation 79 -- 3.2.5 Key elements from effectiveness analysis of palliative care services 79 -- 3.3 ACCEPTABILITY OF PALLIATIVE CARE TO PALLIATIVE PATIENTS, INFORMAL CAREGIVERS AND HEALTHCARE PROFESSIONALS 84 -- 3.3.1 Barriers encountered by palliative patients in the decision-making to initiate palliative care 84 -- 3.3.2 Barriers encountered by the informal caregivers in the decision-making to initiate palliative care 89 -- 3.3.3 Barriers encountered by the healthcare professionals in the decision-making to initiate palliative care for their patients .92 -- 3.3.4 Barriers related to the healthcare system 96 -- 3.3.5 Main values perceived by patients and informal caregivers related to palliative care 97 -- 3.3.6 Key elements determining the acceptability of palliative care 99 -- 4 HOW IS PALLIATIVE CARE ORGANISED IN BELGIUM? 100 -- 4.1 INTRODUCTION AND AIM .101 -- 4.2 LEGISLATION AND GOVERNANCE .101 -- 4.2.1 Legal framework .101 -- 4.2.3 Official advisory bodies related to palliative care 109 -- 4.3.3 Palliative hospices integrated in nursing homes 129 -- 4.3.4 Palliative care in nursing homes 131 -- 4.3.5 Palliative care in hospitals .135 -- 4.3.6 Emerging initiatives in palliative care outside a regulatory framework 142 -- 4.4 THE VOLUNTEERS, A MUST-HAVE IN THE FIELD OF PALLIATIVE CARE .144 -- 4.5 DISCUSSION .145 -- 5 HOW IS PALLIATIVE CARE ORGANISED AT INTERNATIONAL LEVEL? 145 -- 5.1 AIMS OF THE INTERNATIONAL COMPARISON 146 -- 5.2 CURRENT INTERNATIONAL RECOMMENDATIONS TO ORGANISE A GLOBAL PALLIATIVE CARE OFFER AT A COUNTRY LEVEL .146 -- 5.2.1 Categories of palliative care services .146 -- 5.2.2 Different kinds of specialised palliative care services: international norms and standards .148 5.2.3 Access to palliative care services .151 -- 5.2.4 Coordination of palliative care services .151 -- 5.3 PLACE OF PALLIATIVE MIDDLE CARE SERVICES IN THE GLOBAL PALLIATIVE CARE CONTEXT 152 -- 5.3.1 Hospices versus palliative middle care services 152 -- 5.3.2 International history of hospices 152 -- 5.3.3 International description, norms and standards of a hospice .153 -- 5.4 COMPARISON OF THE PALLIATIVE CARE ORGANISATION IN FOUR BORDER COUNTRIES OF BELGIUM .15 -- 5 5.4.1 Detailed analysis of palliative care offer in four foreign countries .155 -- 5.4.2 Overall palliative care policy 155 -- 5.4.3 Generalist palliative care offer 157 -- 5.4.5 Networks 164 -- 5.4.6 Volunteers .165 -- 5.4.7 Inpatient hospice services .166 -- 5.5 LESSONS LEARNED FROM THE INTERNATIONAL COMPARISON AND THE ANALYSIS OF INTERNATIONAL STANDARDS AND FRAMEWORKS .171 -- 5.5.1 Precision about the concept of palliative middle care and the similarities with the inpatient hospice services .171 -- 5.5.2 How to distinguish palliative middle care services from other types of palliative care services? 173 -- 6 WHAT ARE THE GAPS AND PROBLEMS IN BELGIUM? 176 -- 6.1 INTRODUCTION AND AIM .176 -- 6.2 PROBLEMS FOR PATIENTS AND FAMILIES .176 -- 6.2.1 Personal barriers : acceptability, attitudes, language and culture 176 -- 6.2.2 Personal barriers: administrative, socioeconomic, and financial barriers .179 -- 6.2.3 Who benefit from palliative care in Belgium? 185 -- 6.3 PROBLEMS AND GAPS FOR INFORMAL CAREGIVERS AND VOLUNTEERS .186 -- 6.3.1 Relatives are highly solicited to take care of palliative patients .186 -- 6.3.2 Caring for a relative is emotionally and physically burdening .187 -- 6.3.3 Volunteers in palliative care .188 -- 6.4 PROBLEMS AND GAPS FOR HEALTHCARE PROFESSIONALS AND SERVICES .189 -- 6.4.1 Barriers related to health services impacting access to PC for the patients 189 -- 6.4.2 Barriers experienced by healthcare professionals and health services .191 -- 6.4.3 Capacities of the existing palliative care sector .205 -- 6.5 DISCUSSION .207 -- 7 WHICH MODELS ARE RELEVANT TO IMPROVE PALLIATIVE CARE IN BELGIUM? 208 7.1 AIM OF THE FIRST CONSULTATION .208 -- 7.3 DO WE NEED PALLIATIVE MIDDLE CARE? 210 -- 7.4 OBJECTIVES OF PALLIATIVE MIDDLE CARE 213 -- 7.5 PERCEIVED IMPACT OF PALLIATIVE MIDDLE CARE .215 -- 7.6 PRIORITY TARGET GROUPS .217 -- 7.7 POSSIBLE OPTIONS FOR DEVELOPING PALLIATIVE MIDDLE CARE .219 -- 7.7.1 Transversal elements for the development of PMC .219 -- 7.7.2 Propositions for the admission criteria 220 -- 7.7.4 Options for infrastructure and furnishing 226 -- 7.8 PRELIMINARY CONCLUSIONS AFTER THE FIRST CONSULTATIONS AND ELEMENTS FOR ACCEPTABILITY OF SOLUTIONS .232 -- 7.8.1 Key elements 232 -- 8 WHICH MODELS ARE ACCEPTABLE AND PRIORITY FOR IMPROVING PALLIATIVE CARE IN BELGIUM? 235 -- 8.1 AIM OF THE SECOND CONSULTATION 235 -- 8.2 OBJECTIVES OF PALLIATIVE MIDDLE CARE 235 -- 8.3 NEED FOR A DIVERSIFIED OFFER OF SERVICES WITHIN PMC 237 -- 8.4 COORDINATION AND ORGANISATION OF PALLIATIVE MIDDLE CARE .239 -- 8.5 AMBULATORY OFFER 242 -- 8.6 RESIDENTIAL OFFER 244 -- 8.7 PRELIMINARY CONCLUSIONS AFTER THE SECOND CONSULTATION .245 -- 9 PROPOSITIONS FOR REINFORCING AND EXPANDING PALLIATIVE CARE IN BELGIUM 246 -- 9.1 AIMS OF THIS CHAPTER 246 -- 9.2 PALLIATIVE MIDDLE CARE: A NEEDED CONCEPT? 247 -- 9.3 TRANSVERSAL KEY PRINCIPLES TO A PATIENT-CENTRED APPROACH IN PALLIATIVE CARE 248 -- 9.3.1 Respecting as much as possible the patient preferences regarding their end-of-life .248 9.3.2 Promoting palliative care in the community .248 -- 9.3.3 Ensuring patient circulation across the different palliative care services 249 -- 9.3.4 Organising palliative care offer according to needs and preferences rather than based on age or life expectancy 250 -- 9.3.5 Reinforcing the palliative culture among healthcare professionals 250 -- 9.3.6 Ensuring effective collaboration and communication between professionals, patients, relatives and informal caregivers 251 -- 9.3.7 Integrating specific support for the informal caregivers and qualified caregivers .251 -- 9.4 ASSESSMENT OF THE PREFERENCES, NEEDS AND RESOURCES OF PATIENTS, RELATIVES AND PROFESSIONALS 2529.4.1 Preferences, needs and resources 252 -- 9.4.2 Current situation .253 -- 9.4.3 Assessment characteristics .254 -- 9.4.4 Possible actors of the assessment 255 9.5 CURRENT OFFER IN PALLIATIVE CARE IN A NUTSHELL 257 -- 9.6.1 Inpatient palliative care service in the community: non-medicalised residential service 262 -- 9.6.2 Inpatient palliative care service in the community: medicalised residential services .266 -- 9.6.3 Outpatient hospital-based palliative care in the community: palliative care via hospital at home 270 -- 9.6.4 Outpatient hospital-based palliative care in hospitals: palliative care in day hospital 275 -- 9.6.5 Outpatient hospital-based palliative care in hospitals: transmural palliative care consultations 278 -- 9.7 KEY ELEMENTS FOR AN INTEGRATED APPROACH OF PALLIATIVE CARE 281 -- 9.8 FINAL PROPOSITION 283 -- 9.9 CONCLUSION 295 -- APPENDICES 296REFERENCE LIST 311 -