Use ‘Advance Care Planning’ rather than ‘Advance Directive, Directions, Decisions and Living Wills’
When engaging in advance care planning, the use of language such as ‘directions,’ ‘decisions’ and ‘living wills’ is discouraged in Ontario. Similarly, the term ‘Advance Directive’ should not be used in Ontario on health care forms, institutional policies, or in discussions with patients.
These terms would appear to be transplanted from other jurisdictions (i.e., provinces, countries) where, for example, an advance directive or a living will, are specific documents that 'direct' treatment by health practitioners. The use of these terms could lead patients, SDMs and health practitioners to misunderstand Ontario's legislative system for giving and refusing informed consent.
Use ‘Planning’ rather than ‘Plan’
The use of the word “plan” contributes to the misunderstanding of the process of advance care
planning (expression of wishes, values and beliefs) and its connection to health care consent (decisions). In Ontario we should not utilize the word ‘plan’ when speaking of advance care planningortheprocessofexpressingourwishesforfuturehealthorpersonalcare. ‘Plan’ connotes a decision versus a wish, may mistakenly imply consent (it is not informed consent), and may focus on a need to provide information in a written form or may mistakenly steer people to believe that what they share in the process of ACP is a decision and has some legal standing.
ACP in Ontario is the expression of wishes and is not about decisions.
In Ontario, we get consent from a person and not a piece of paper or document. The expression of wishes (ACP) is a process.
Use ‘Decide who will speak on your behalf’ rather than ‘Choosing a Decision Maker’
• The use of the wording ‘Choose’ your Substitute Decision Maker (SDM) may mislead people in
believing they are required to ‘choose’ when in actual fact Ontario legislation provides a ranked list (hierarchy of SDM) that allows for an automatic SDM for all. If the person does not feel that the automatic Substitute Decision Maker is the right individual to act on their behalf, if they should become mentally incapable, then they could decide to name a specific person(s) in a Power of Attorney for Personal Care (POAPC) document.
Use ‘Recording your Substitute Decision Maker and Communicate your Wishes’ rather than ‘Recording of Wishes’
In Ontario the law indicates that wishes can be expressed using any communication means such as
orally, written, Bliss, Braille etc. Therefore, it is important to ensure that patients and health care providers understand the important distinction of not having to record wishes. It is recommended that all materials reinforce the broad communication ability in the sharing of wishes (ACP) and intentionally seek to not place an overemphasis on written wishes. The focus on written wishes contributes to the misconception that a written record holds legal power, that it is a ‘directive’ for the healthcare provider and that informed consent is not required. The communication of wishes is a guide for the future SDM.
Clearly distinguish the role of the ‘Substitute Decision Maker’ Versus the ‘Health Practitioner’
The Ontario legal model is different and health providers do not take directions from some sort of
statement of future wishes expressed by the patient. Ontario does not have “living wills” or “advance directives” as in some other provinces. When a patient is deemed mentally incapable, it is up to the Substitute Decision Maker (SDM) to consider the wishes, values and beliefs of the patient, apply it to the treatment decision to be made after being informed of the patients’ present health condition and treatment options. The SDM is required to interpret those wishes, values, beliefs and what the patient meant by them. The health practitioners should never be screening out treatment options based on the health practitioners’ interpretations of the wishes, values and beliefs. The obligation is placed on the SDM to make the decisions about what treatments to consent to, not the health practitioner.
Use the correct term of “Substitute Decision Maker” not references to Decision-maker, Substitute, Surrogate, Proxy or Agent.
Use ‘Mentally Capable Person’ rather than ‘Capable Person’
Using “mentally capable person” is preferred because a person may be mentally capable yet
physically incapacitated. This explicitly emphasizes that even if a person is physically incapacitated there are a variety of means available to communicate Bliss, Braille etc. While a person is mentally capable they are always the decision maker. The Ontario Capacity office defines mental capacity as the ability to understand the information that is relevant to a decision or
to appreciate the consequences of a decision. Therefore, the use of the correct concept and term
of “mentally capable” to replace all reference to “capable” person throughout all materials is recommended for clarity.
Where you use the words "capable person" only in your materials as an adaptation for specific users ensure that you are providing a definition to set the context when referring to capable or capacity. For example, define 'capable' outlining the concepts of understanding the information one needs to make a decision and appreciating the likely results of making that decision. This would help to ensure the understanding of mental capacity and health care decision making.
Use ‘Family and Friends’ rather than ‘Loved Ones’
Given that family and friends may not always be loved ones, for accuracy it is recommended that
the term family and friend be used in all materials.
Focus on ‘Future Health and Personal Care’ rather than ‘End of Life’
Engaging in the process of advance care planning is an opportunity for all mentally capable adults
to share what is important to them for future health and personal care wishes. The link to end of life only can contribute to the misconception this engagement is for people facing that situation only. If we encourage all to engage in the expression of what is important for them in future health and personal care decisions this speaks to the broader intent of the legal framework in Ontario and is an excellent opportunity to make these conversations normal and part of what we should all consider as a great opportunity to share with family, friends, future SDM’s and health care providers.
It is important to recognize that people at end of life are not advance care planning but are indicating a consent to a treatment or plan of treatment based on their current context.
Clearly distinguish the ‘Process of Advance Care Planning’ Versus ‘CPR Decisions’
The process of Advance Care Planning is thinking about what is important to you and what makes
your life meaningful. It is talking about your future wishes, values and beliefs. Whereas, CPR information or resources are a support to an informed consent conversation. Therefore, CPR materials are typically about health care consent and not Advance Care Planning even if this particular treatment decision is about ‘future’ care. Informed consent (decision) to have or not have CPR included in a person’s plan of treatment is based on their current health condition. Linking health care decisions and consent to the process of Advance Care Planning is incorrect.