“Historically, society has made a lot of incorrect and harmful assumptions and just generalizations that are applied to way too many people. We need to recognize the diversity of all human beings and strive to understand the individual person’s needs and goals if we actually want to help them.” – Alicia Thatcher, MD
The United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) recognizes people with disabilities, including people with intellectual and developmental disabilities (IDD), as having the right to access necessary supports that confirm their equal standing with others before the law.
Canada has ratified this convention. Subsequently, family physicians have an obligation to provide patients with intellectual and developmental disabilities the necessary support to understand the decisions they face in healthcare settings. They also have a legal responsibility to obtain informed consent for healthcare interventions. Furthermore, they must clarify the appropriate role of family, friends, and trusted workers in supporting patients who may experience difficulties understanding information.
Despite these obligations, many provinces and territories in Canada, with exceptions that include British Columbia, Manitoba and Yukon, have yet to develop laws and regulations that explicitly recognize supported decision-making arrangements for people with intellectual and developmental disabilities. Accordingly, family physicians and other healthcare providers often find themselves in grey practice areas when seeking informed consent for healthcare interventions involving people with IDD.
To address this issue, the Developmental Disabilities Program of Surrey Place has developed the “Decision Making in Health Care of Adults with Intellectual and Developmental Disabilities: Promoting Capabilities” tool (Promoting Capabilities tool), which is available through the Surrey Place website.
Shifting the focus of decision-making assessments
The Promoting Capabilities tool guides clinicians in shifting the focus from assessing what adults with IDD can or cannot do independently to evaluating and addressing the accommodations and support for decision making that they need to be involved as much as possible in reaching decisions about acceptable and preferred healthcare interventions.
Jurisdictions in Canada have different laws recognizing who can give formal consent for and authorize a healthcare decision. But giving consent is only one part (the final part) of the consent process. Promoting the capabilities of adults with IDD by providing needed accommodations for them to be optimally involved in this process, formally or informally, is a practice that can be incorporated into any legal regime and realized in any healthcare setting.
“I have colleagues and friends who say, “Yes, I practice supported decision making,” but they think of it as something nice to do. They don’t think of it as a somewhat more formal process…if you're working with people with intellectual and developmental disabilities, it is a formal kind of response.” – Bob Parke, Bioethicist
The Promoting Capabilities tool anticipates that some people with IDD might need support from other people to reach healthcare decisions “interdependently.” This could involve helping to elicit, clarify or communicate the person with IDD’s health-related goals and preferences among available treatment options. Ultimately, this tool advances the patient understanding and acknowledges the role of supporters and accommodations, drawing upon existing laws and structures across Canada that mandate accommodations for people with disabilities.
The assessment process, for which the Promoting Capabilities tool is a guide, gives adults with IDD the opportunity to choose their supporters – people they know and trust – to help with decision-making. These supporters can assist in many ways, such as accessing health information, allowing the person to understand information, and eliciting, interpreting, and communicating the person’s health-related goals, values and treatment preferences. In certain jurisdictions in Canada (British Columbia, Yukon), the patient can then enter into an agreement with them to effectively authorize their inclusion in the healthcare decision-making process.
The Promoting Capabilities tool mitigates ableism present in the healthcare and legal systems by recognizing that adults with IDD have a range of decision-making capabilities. Many can realize and develop those capabilities with accommodations and support as needed. This tool recognizes that, whether or not one has a disability, we all make healthcare decisions with the help of other people to some extent.
Supported decision-making underlines the importance of adults with IDD having collaborative support in their healthcare decision-making process. It is not a legal framework in Canada. Instead, it recognizes that people who have different capacities to make decisions can still contribute to them; they can offer information regarding life history, methods of communication used and the quality of previous experiences with healthcare decisions.
The Promoting Capabilities tool also engages clinicians actively as shared partners of adults with IDD in reaching healthcare decisions with their supporters.
Shared decision-making focuses on how the family physician can primarily provide comprehensive support to a patient. The process includes collaboration among the patient, caregiver, and clinician. That collaboration may consist of exploring the patient’s needs related to understanding a health condition and appreciating the available options and what they will mean for them.
Everyone shares the responsibility of healthcare decisions through mutual engagement. Specifically, the clinician’s role might be to clarify the patient’s values (e.g., life goals, experience, sources of enjoyment, etc.) and gain relevant information. The patient and the caregiver are never left to make decisions without the input of a family physician.
“We need to try to find ways to engage the person...with the right approach, the person won’t be afraid to participate…” – Bob Parke, Bioethicist
The Promoting Capabilities tool encourages family physicians to include trusted supporters identified by their patients as much as possible within the appropriate existing legal frameworks. Supporters can help with facilitating understanding for both patient and physician and can play an important role.
Adults with IDD are a diverse group of people who can contribute to decisions regarding their healthcare to varying degrees if provided with the necessary accommodations and supports. The Promoting Capabilities tool helps clinicians shift the focus of regular capacity assessments from the independent mental abilities of people with IDD to the quality of the supports needed to enable them to exercise their legal capacity through the healthcare decision-making process.