Palliative Care

Care for Adults With a Serious Illness

Resources Quality Statements Working Group About

3

Advance Care Planning—Substitute Decision-Maker

People with a progressive, life-limiting illness know who their future substitute decision-maker is. They engage in ongoing communication with their substitute decision-maker about their wishes, values, and beliefs, so that the substitute decision-maker is empowered to participate in the health care consent process if required.

Background

Advance care planning includes understanding and confirming a future substitute decision-maker who can communicate a person’s wishes, values, and beliefs about future health care, and make decisions when that person is no longer mentally capable of doing this for themself. The Ontario Health Care Consent Act outlines a hierarchical list of people who would automatically be considered a substitute decision-maker when a person is mentally incapable of making decisions about their own care. If a person is not satisfied with their automatic substitute decision-maker, they can formally appoint someone else to be their substitute decision-maker using a “Power of Attorney for Personal Care.” A “Power of Attorney for Personal Care” is a legal document in which one person gives another person the authority to make personal care decisions on their behalf if they become incapable. A “Power of Attorney for Personal Care” is for personal care decisions (e.g., health care, nutrition, safety). Financial and property decisions are through a “Continuing Power of Attorney for Property.”

Ongoing communication between the person with a progressive, life-limiting illness and their substitute decision-maker is important so that the substitute decision-maker is aware of their role and can participate fully as the decision maker for the person if or when they are no longer able to communicate. The substitute decision-maker follows the person’s wishes where they are known, and acts in the person’s best interests if no wishes are known or applicable to the decision to be made. Advance care planning is relevant for every person and family, and these conversations should take place in health and illness. Advance care planning should be revisited regularly as a person’s condition changes.

What This Quality Statement Means

For Patients, Families, and Caregivers

Make sure you know who your future substitute decision-maker will be, by Ontario law, if you become mentally incapable of making health decisions. Ontario’s Health Care Consent Act automatically assigns a substitute decision-maker based on a ranked list.

If the person Ontario's Health Care Consent Act automatically assigns to be your future substitute decision-maker is not the person you want in this role, prepare a legal document called a “Power of Attorney for Personal Care.” It is not enough to tell your care team that you want a different substitute decision-maker.

Once you have confirmed your substitute decision-maker, talk with them regularly about your wishes, values, and beliefs. This will help them make the right decisions for you, if needed. If your wishes change, keep them informed.

For Clinicians

Ensure that your patients know who the law considers to be their substitute decision-maker(s) and how they can appoint someone else if they wish. Encourage patients to plan for their care—to think about their values, wishes, and beliefs, and then share those with their family and their substitute decision-maker.

For Health Services

Ensure that information and resources are available for people to learn about Ontario laws related to advance care planning, substitute decision-making, and health care consent.

Quality Indicators

Process Indicators

Percentage of people with identified palliative care needs who know who their future substitute decision-maker is

Denominator: total number of people with identified palliative care needs
Numerator: number of people in the denominator who know who their future substitute decision-maker is
Data source: local data collection
Similar question available in the CaregiverVoice Survey: “Did your family member/friend know which person would be their substitute decision-maker in case he/she was not able to make decisions about future care?” (Response options: “Yes, he/she knew who their substitute decision-maker would be; No, he/she did not know who their substitute decision-maker would be; Don’t know”)

Percentage of people with identified palliative care needs who state that they have shared their wishes, values, and beliefs with their substitute decision-maker regarding the kind of health and personal care they would want to receive in the future

Denominator: total number of people with identified palliative care needs who know who their substitute decision-maker is
Numerator: number of people in the denominator who state that they have shared their wishes, values, and beliefs with their substitute decision-maker regarding the kind of health and personal care they would want to receive in the future
Data source: local data collection
Similar question available in the CaregiverVoice Survey: “Did he/she have conversations with his/her substitute decision-maker to share their wishes, values, and beliefs about the kind of health and personal care they would want to receive in the future?” (Response options: “Yes, he/she had these conversations with their substitute decision-maker; No, he/she did not have these conversations with their substitute decision-maker; Don’t know”)

Definitions Used Within This Quality Statement

Advance care planning

Advance care planning is ongoing and dynamic, because a person’s preferences may change over time as their health changes. It may be initiated at any point, and may involve people who are currently healthy. In advance care planning, a mentally capable person identifies their substitute decision-maker by confirming the automatic substitute decision-maker from the hierarchy list in the Health Care Consent Act or by choosing someone else using a “Power of Attorney for Personal Care.” The hierarchy outlined in Ontario’s Health Care Consent Act is as follows (note: numbers 1 to 3 occur if people are legally appointed to these roles):

Guardian of the person with authority for health decisions
Attorney for personal care with authority for health decisions
Representative appointed by the Consent and Capacity Board
Spouse or partner
Child or parent or a children’s aid society (person with right of custody)
Parent with right of access
Brother or sister
Any other relative
Office of the Public Guardian and Trustee

The capable person then shares their wishes, values, and beliefs with the substitute decision-maker, and discusses how they would like to be cared for if they become mentally incapable of giving or refusing consent.

Substitute decision-maker

A substitute decision-maker is a person who makes care and treatment decisions on another person’s behalf if or when that person becomes mentally incapable of making decisions for themselves. The substitute decision-maker makes decisions based on their understanding of the person’s wishes, or, if these are unknown or not applicable, makes choices that are consistent with the person’s known values and beliefs and in their best interests.

Wishes, values, and beliefs

A person’s wishes, values, and beliefs convey who the person is, how they would make choices for themselves, what they think is important, and what would influence their decision-making. Values are the principles on which a person’s morality and/or spirituality is based. If a person is mentally incapable of making choices for themselves, the substitute decision-maker (not the health care professional) interprets their wishes.

Health care consent

Health care consent refers to an informed and contextualized decision involving a mentally capable person and a health care provider as outlined in the Ontario Health Care Consent Act. Health care providers who propose a treatment must obtain informed consent from a mentally capable patient (or their substitute decision-maker, if they do not have the mental capacity). A discussion about consent must address the person’s present condition; available treatment options; risks, benefits, side effects, and alternatives to treatment; and what would happen without the proposed treatment.

Capacity or mental capacity

Under Ontario’s Health Care Consent Act, a person is capable with respect to a health care decision if they have the ability to understand the information that is needed to make a decision and have the ability to appreciate the consequences of the decision or lack of decision. Capacity is issue- or task-specific. A person’s specific capacity to understand information and appreciate the decisions that must be made should be respected so that their mental capacity for a specific health care decision is recognized. A person may be capable with respect to making some health care decisions, but incapable with respect to others. If a person is incapable with respect to making a health care decision, the substitute decision maker can give or refuse consent on the person’s behalf.

Evidence to Improve Care