Supporting adults with intellectual and developmental disabilities to participate in health care decision making

To discuss what is new in the revised guideline 3 of the "Primary care of adults with intellectual and developmental disabilities [IDD]. 2018 Canadian consensus guidelines" on decision-making capacity, and how to implement the recommendations.

Integrative review based on a literature search, the framework of the United Nations Convention on the Rights of Persons with Disabilities, and the experience of the authors.

Person-centred health care of adults with IDD should include all possible contributions from the patient in decision making. At present, legal criteria do not address the relational aspects of decision making that are important for adults with IDD. The revised guideline 3 incorporates recent thinking regarding supported and shared decision making. It envisages decision making as a collaborative exercise in which the patient, trusted caregivers, and the family physician all are involved in deciding on medically appropriate interventions that promote the patient's goals or values.

Family physicians and caregivers both play an important role in supporting adults with IDD so that they can participate in health care decision making. Communication, mediation, and advocacy skills, plus the use of tools adapted for adults with IDD, can facilitate the family physician's role.