Promoting health care decision-making capabilities of adults with intellectual and developmental disabilities

Promoting participation of patients and their caregivers in health care decisions is central to person-centred care. Family physicians in Canada are required by law to obtain informed consent for health care interventions from patients who are assessed to have decision-making capacity or from their legally designated substitute decision makers if patients are assessed to lack such capacity. People with intellectual and developmental disabilities (IDD) and others with similar cognitive and adaptive impairments, however, might need to be accommodated by care providers or to arrange decision-making support by committed and trusted caregivers who know them well in order to make informed health care decisions. Family physicians in other parts of Canada, however, can promote supported decision making of such patients when substitute decision makers cooperate. In this case, the family physician first makes adjustments to accommodate the patient and then arranges supported decision making to elicit the patient's life goals and preferences and help the patient to apply these to the health care decision. The family physician also facilitates discussion among the patient, caregivers whom the patient trusts, and the patient's substitute decision maker to arrive at a shared decision.