Leading Practice Guidelines

Informed Consent & Decision Making

Type: Voice

Guideline: The organization provides robust information, education and support to people served in order to facilitate decision making and informed consent that takes into account their learning and communication style and needs.

What does this look like?

The organization has a policy and statement of commitment in place on how and when they seek and gain informed consent from people they serve. This policy also identifies how they support people to make decisions. This may include reference to:

• Capacity to give consent and make decisions should be assumed. Everyone makes decisions – either big or small. Formal decision makers are asked to provide consent on the persons’ behalf only in the specific areas that have been designated by the Vulnerable Person’s Commissioner. People are supported to make their own decisions in all other areas.
• Supported Decision Making: Supported decision-making is a process by which a person who requires assistance can be supported in making his or her own decisions. Some key factors to supported decision making are:
  • The organization needs to learn how people make decisions and document what support they need to be successful.
  • They may require such support as interpreter assistance, communication support, assistive technologies, and plain language translation.
  • People can make decisions that others may not agree with. A person can change their mind at any point.
  • Some people may need more support to make decisions such as involving family, or independent advocates. The supporter(s) solely explain(s) the issues, and may interpret the signs and preferences of the person to others based on their prior knowledge of and relationship to the individual.
  • The process and supports may include:
    
    • Helping a person access all information and options that are useful or necessary for a decision;
    • Helping her or him weigh the potential consequences and the pros and cons of each option; explaining possible risks of proposed decisions;
    • Helping the person get advice from others that they rely on and trust;
    • Identifying if the person can trial their decision before deciding;
    • Assisting in communicating the decision to third parties;
    • Carrying the decision out, if applicable;
    • Supporting the person through the consequences of their decisions, assisting with learning and assessing whether they wish to change their decision over time.
      • People’s skills change over time so it’s important to re-visit whether they continue to require the same level of support to make decisions and in what areas throughout their life.
  • Formal consent:
    • For consent to be truly informed, the person must receive information in a manner that is understandable and accessible to them. Decision must be voluntary without threat or force.
    • Need to engage and listen to the person and give them information in a manner that has been adapted to their learning style, strengths and abilities.
    • Written consent is time limited, specific, and described clearly in a way that the person can understand. There is a clear system for documenting and storing these consents.

The organization trains, supports and supervises their staff to meet the expectations outlined in policy/statement and to provide thoughtful, ethical and supportive assistance to people receiving services to make decisions and give consent.

The organization provides information and education to people served and their families on when, how and why they will be asked for formal consent and/or to make decisions. Limitations or changes to how and who these decisions are made by are explained in a timely and accessible way.

The organization ensures that all research done within its services has received ethics approval. People are given clear and robust information about any research to decide if they wish to participate.

How would you know this is happening? (Evidence)

What you see in systems:

• Clear policy on when and how informed consent will be sought from people served, how this will be documented and stored.
• Training content and records of completion
• Written information for people served and their family/support network about when and how they will be asked to make decisions and/or give formal consent.
• Written consents are accessible and organized.

What you see in actions:

• Staff know when and how they should be seeking formal consent from people, how to assist people to make decisions and how to document and communicate these decisions.
• Feedback from people supported and their families indicate that they have been supported to make decisions in a structured way, know when and how they will be asked to give formal consent and what limitations there may be on their decision making authorities.