Assess decision-making capacity
Assess decision-making capacity of adults with IDD using a tool that is adapted to them and considers their need for accommodations and supports (eg, the Decision-Making Checklist32). Screen for factors that can affect decision-making capacity, such as those listed in the background, and address with interventions or supports. When uncertain, refer to a psychologist or other professional who is familiar with assessing people with IDD or similar needs.31,33
Strongly Recommended
Expert Experiential
Capacity for decision making is relational. Many patients with IDD can participate to some extent in decision making if provided with accommodations and supports by health professionals and family and other committed caregivers30 (eg, for communication (see Effective Communication) or deliberation). Decision-making capacity varies with the complexity of a decision. It can be affected by factors such as the patient’s limited or adverse previous health care experiences, level of distress, and mental health conditions. These factors can be difficult to recognize in people with IDD but can often be addressed when identified (see Pain and Distress, and Psychiatric disorders).17,31
Adapt communication and involve caregivers
In assessing decision-making capacity and supporting a patient’s decision making, adapt communication to the patient and involve family and other caregivers familiar with the patient, as in the guideline Effective Communication.27
Strongly Recommended
Expert Experiential
Capacity for decision making is relational. Many patients with IDD can participate to some extent in decision making if provided with accommodations and supports by health professionals and family and other committed caregivers30 (eg, for communication (see Effective Communication) or deliberation). Decision-making capacity varies with the complexity of a decision. It can be affected by factors such as the patient’s limited or adverse previous health care experiences, level of distress, and mental health conditions. These factors can be difficult to recognize in people with IDD but can often be addressed when identified (see Pain and Distress, and Psychiatric disorders).17,31
Shared decision making
Engage in a shared decision making process with patients and their caregivers. When the legal substitute decision maker does not know the patient well, propose consulting trusted family and other caregivers to inform deliberations.31,33
Strongly Recommended
Expert Experiential
Deliberating on interventions that both meet the health needs of the patient and reflect the patient’s preferences and intentions is the goal of person-centred decision making. Patients with IDD might need support to deliberate. Patients who do not meet the legal requirements for giving or refusing consent have life histories and are able sometimes to provide signs of their preferences and intentions to trusted family and other caregivers that can inform deliberations. Substitute decision makers should be guided by knowledge of this person gained from those closest to her or him.17,31
Decision-Making Checklist
The Decision-Making Checklist , developed by the Developmental Disabilities Primary Care Initiative at Surrey Place (Toronto, 2011), provides a checklist and process for obtaining consent from people with intellectual and developmental disabilities.
Communicating Effectively
The tip sheet Communicating effectively with people with developmental disabilities, developed by the Developmental Disabilities Primary Care Initiative at Surrey Place (Toronto, 2011), describes adaptations in communication that facilitate the interaction with people with intellectual and developmental disabilities.
Learn how to implement these guideline recommendations into your practice from selected articles in the special issue on primary care of adults with intellectual and developmental disabilities in Canadian Family Physician, Vol 64 (suppl 2): S1-78, April 2018:
17. Sullivan WF, Heng J. Ethics. In: Taggart L, Cousins W, editors. Health promotion for people with intellectual and developmental disabilities. Maidenhead, BRK, England: Open University Press; England; 2014. p. 204-10.
27. Kelly M. Communicating effectively with people with developmental disabilities. In: Sullivan WF, Developmental Disabilities Primary Care Initiative Scientific and Editorial Staff, editors. Tools for the primary care of people with developmental disabilities. Toronto: MUMS Guideline Clearing House; 2011. p. 18-20.
30. O’Dell R, Leafman J, Nehrenz Sr. GM, Bustillos D. Health care decision making and adults with intellectual disability: A descriptive survey. AJOB Primary Research. 2012;3(1):8-13.
31. Heng J, Sullivan WF. Ethical issues relating to consent in providing treatment and care. In: Brown I, Percy M, editors. Developmental disabilities in Ontario. 3rd ed. Toronto: Ontario Association on Developmental Disabilities; 2011. p. 552-60.
32. Gillis G, Gitta M, Heng J, Korossy M, Leong R, Sullivan WF, et al. Informed consent in adults with developmental disabilities & informed voluntary consent checklist and sample questions. In: Sullivan WF, Developmental Disabilities Primary Care Initiative [DDPCI], editors. Tools for the primary care for people with developmental disabilities. Toronto: MUMS Guideline Clearinghouse; Surrey Place; 2011. p. 11-7.
33. United Nations.Convention on the rights of persons with disabilities[Website]. New York: United Nations. 2006. Accessed 2017 Feb 21.
