Advance care planning in palliative care for people with intellectual disabilities: a systematic review.

Background: Advance care planning (ACP) is defined as a person-centered, ongoing process of communication that facilitates patients’ understanding, reflection and discussion of goals, values, and preferences for future care. There is evidence for the general palliative care population that ACP strengthens the patient’s autonomy and improves quality of care near the end of life. However, more insight is needed into whether and how ACP is applied in palliative care for people with ID and what the effects of ACP are in this specific group. Aims: To gain insight into what is known about the use and effects of ACP in palliative care for people with ID. Methods: Four databases were systematically searched: Pubmed, PsycINFO, Embase, and CINAHL. A stepwise procedure was used to identify relevant studies. Included were empirical quantitative, qualitative, or mixed methods studies, concerning people with ID who receive palliative care or who non-acutely died, and describing (elements of) ACP. Methodological quality was graded by a critical appraisal tool. Results: Fourteen studies were included, of which seven quantitative, three qualitative, and four mixed method studies. Most studies described the perspective of professionals and/or relatives. No studies focused on the perspective of the patient with ID. Studies concerned different elements of ACP: end-of-life decision-making, decision-making about medical interventions, decisions about place of palliative care, decision-making in palliative care, organizational policies, collaboration in ACP, communication around advance directives, inclusion of family, documentation of wishes for future care, and start of ACP. No intervention studies on effectiveness of ACP were found. Discussion: There is a need to further investigate how ACP can be implemented within the palliative care for people with ID, how to address the needs and preferences of patients with ID, and what the effects of ACP are. Funding source: ZonM