Advance Care Planning in palliative care for people with intellectual disabilities

Advance Care Planning (ACP) is defined as: “the ability to enable individuals to define goals and preferences for future medical treatment and care, to discuss these goals and preferences with family and health-care providers, and to record and review these preferences if appropriate”. The idea is that this proactive approach will ensure that the care provided is in line with a person’s wishes and needs, resulting in a better quality of life. Despite the importance of ACP, little is known as yet about ACP in the care for people with ID. This thesis aims to obtain a better understanding of ACP in palliative care for people with ID. The research questions addressed in this thesis are: - What is already known in the scientific literature about the use, content and effects of ACP for people with ID in need of palliative care? (Chapter 2) - How does ACP currently take place within organisations for people with ID requiring palliative care and how are the wishes of people with ID taken into account? (Chapter 3) - What do people with ID, relatives and professionals perceive as important for ACP in palliative care for people with ID? (Chapter 4) - What facilitators and barriers influence the implementation process and sustainment of innovations in palliative care for people with ID? (Chapter 5) - How is an ACP programme for professionals caring for people with ID developed, implemented and evaluated? (Chapter 6) The thesis ends with a summary and general discussion (Chapter 7), in which the main findings are summarised and discussed, methodological considerations are described and recommendations are made for practice and future research.