Supporting Adults with Intellectual and Developmental Disabilities to Participate in Health Care Decision Making

Overview

Journal Can Fam Physician

Specialties General Medicine
Public Health

Date 2018 Apr 14

PMID 29650742

Citations 7

Authors

William F Sullivan

John Heng

Affiliations

Soon will be listed here.

Abstract

Objective: 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.

Quality Of Evidence: 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.

Main Message: 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.

Conclusion: 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.

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References

Sullivan W, Diepstra H, Heng J, Ally S, Bradley E, Casson I . Primary care of adults with intellectual and developmental disabilities: 2018 Canadian consensus guidelines. Can Fam Physician. 2018; 64(4):254-279. PMC: 5897068. View

Ferguson L, Murphy G . The effects of training on the ability of adults with an intellectual disability to give informed consent to medication. J Intellect Disabil Res. 2013; 58(9):864-73. DOI: 10.1111/jir.12101. View

Goldsmith L, Skirton H, Webb C . Informed consent to healthcare interventions in people with learning disabilities--an integrative review. J Adv Nurs. 2009; 64(6):549-63. DOI: 10.1111/j.1365-2648.2008.04829.x. View

Baumbusch J, Phinney A, Baumbusch S . Practising family medicine for adults with intellectual disabilities: patient perspectives on helpful interactions. Can Fam Physician. 2014; 60(7):e356-61. PMC: 4096281. View

Engebretsen E, Vollestad N, Wahl A, Robinson H, Heggen K . Unpacking the process of interpretation in evidence-based decision making. J Eval Clin Pract. 2015; 21(3):529-31. PMC: 6680255. DOI: 10.1111/jep.12362. View

Grad R, Legare F, Bell N, Dickinson J, Singh H, Moore A . Shared decision making in preventive health care: What it is; what it is not. Can Fam Physician. 2017; 63(9):682-684. PMC: 5597010. View

Wong J, Clare C, Holland A, Watson P, Gunn M . The capacity of people with a 'mental disability' to make a health care decision. Psychol Med. 2000; 30(2):295-306. DOI: 10.1017/s0033291700001768. View

King J, Moulton B . Rethinking informed consent: the case for shared medical decision-making. Am J Law Med. 2007; 32(4):429-501. DOI: 10.1177/009885880603200401. View

Cea C, Fisher C . Health care decision-making by adults with mental retardation. Ment Retard. 2003; 41(2):78-87. DOI: 10.1352/0047-6765(2003)041<0078:HCDMBA>2.0.CO;2. View

10.

Walker P, Lovat T . Dialogic Consensus In Clinical Decision-Making. J Bioeth Inq. 2016; 13(4):571-580. DOI: 10.1007/s11673-016-9743-z. View

11.

Arscott K, Dagnan D, Kroese B . Assessing the ability of people with a learning disability to give informed consent to treatment. Psychol Med. 2000; 29(6):1367-75. DOI: 10.1017/s0033291799008715. View

12.

Wark S, MacPhail C, McKay K, Mueller A . Informed consent in a vulnerable population group: supporting individuals aging with intellectual disability to participate in developing their own health and support programs. Aust Health Rev. 2016; 41(4):436-442. DOI: 10.1071/AH15235. View

13.

Emanuel E, Emanuel L . Four models of the physician-patient relationship. JAMA. 1992; 267(16):2221-6. View

14.

Elwyn G, Frosch D, Thomson R, Joseph-Williams N, Lloyd A, Kinnersley P . Shared decision making: a model for clinical practice. J Gen Intern Med. 2012; 27(10):1361-7. PMC: 3445676. DOI: 10.1007/s11606-012-2077-6. View

15.

Sullivan W, Berg J, Bradley E, Cheetham T, Denton R, Heng J . Primary care of adults with developmental disabilities: Canadian consensus guidelines. Can Fam Physician. 2011; 57(5):541-53, e154-68. PMC: 3093586. View