What are Advance Care Planning, Goals of Care Discussions and Health Care Consent?
In Ontario, mentally capable people make their own health care decisions. Sometimes, though, people become mentally incapable of understanding what they are consenting to. If the physician prescribing treatment(s) determines that a person is mentally incapable of providing informed consent then the person’s Substitute Decision-Maker will provide or refuse consent.
What is Mental Capacity?
There are core components of capacity, as defined in the Health Care Consent Act are:
- Ability to understand the information that is relevant to making a health care decision about the treatment, admission, or personal assistance service, and
- Ability to appreciate the reasonable foreseeable consequences of a decision or lack of decision.
It is the responsibility of the health care provider proposing the treatment to determine if the person is mentally capable of giving informed consent. In order for a person’s Substitute Decision Maker(s) to step in and make health care decisions for them, the person needs to be deemed mentally incapable of making treatment and care decisions for themselves.
What is Advance Care Planning?
In Ontario, Advance Care Planning (ACP) is a process that involves having a conversation where a person:
- Confirms or decides upon their Substitute Decision Maker(s) (SDMs); and
- Shares their wishes about FUTURE health care with their Substitute Decision Maker(s).
Advance Care Planning is a way to make sure there is someone who knows a person’s wishes and can give or refuse consent for health care decisions in the future, if necessary. It’s a way to give a Substitute Decision-Maker(s) the confidence to make decisions that reflect what’s important to the person they are consenting on behalf of.
The goal of Advance Care Planning is to communicate wishes, which are based on the person’s values and beliefs, to their Substitute Decision Maker(s) so they can be in the best position to make decisions and provide consent if necessary. These conversations can occur in any setting as long as they are related to future care not current care decisions (e.g. in a hospital setting they might occur in the context of preparing the person for discharge or talking about disease progression).
In Ontario, the Health Care Consent Act is the law which guides Advance Care Planning and Health Care Consent. It is important to understand that the laws related to Advance Care Planning and Health Care Consent are different across Canada.
Who is the Substitute Decision Maker (SDM)?
In Ontario, the law provides everyone with an automatic Substitute Decision Maker for health care by providing a ranking list or hierarchy of Substitute Decision Maker(s). The person or persons that are the highest ranked on this list and that meet the requirements will be the Substitute Decision Maker(s) for health care consent if needed.
Note: If a person does not want the highest-ranking person in the hierarchy list to be their Substitute Decision Maker(s), they must prepare a Power of Attorney for Personal Care or POAPC.
The following is the Hierarchy of Substitute Decision Maker(s) in the Health Care Consent Act, s.21:
Note: The Caregiver, Next of Kin, or Emergency Contact are not necessarily the Substitute Decision Maker unless they are the highest ranked in the hierarchy OR designated in a Power of Attorney for Personal Care.
What are the requirements to be a Substitute Decision Maker?
The “requirements” to be a Substitute Decision Maker are that the person must be:
- Willing to act as a Substitute Decision Maker;
- Mentally capable to make the needed health decisions for the mentally incapable person;
- Available (in person or by phone or by some other means) when a decision needs to be made;
- Not be prohibited by a court order from acting as a substitute decision maker and;
- At least 16 years of age.
Note: If the person that is the highest ranking in the hierarchy does not meet these requirements to be a Substitute Decision-Maker, then the health care provider must move down the hierarchy to the next person in the list.
When does my Substitute Decision-Maker Act?
A person’s Substitute Decision-Maker(s) is asked to provide consent or refusal for treatment only if the person themselves is determined by the treating physician to be mentally incapable of making their own health care decisions. A person’s expressed wishes will be used by their Substitute Decision-Maker(s) to guide their decision making, to ensure that care is based on the person’s prior wishes, values and beliefs. If the Substitute Decision-Maker is asked to make a decision about a particular treatment and does not know of any wishes that the person had that would apply, the Substitute Decision-Maker must decide what would be in the person’s best interest based on their knowledge of the person’s values and beliefs.
What are Goals of Care Discussions?
- Goals of Care (GoC) discussions occur prior to a health care decision that needs to be made right now.
- GoC discussions are the conversations that a capable person or their SDM has with the health care team in order to better understand the current illness, and for the team to understand the person’s values, beliefs and goals for care.
- The SDM, if involved, because the person is deemed mentally incapable, will now consider the person’s prior wishes if ACP conversations occurred.
- GoC conversations aim to align the person’s goals with available treatment options for care.
- Multiple conversations may be required before a person or their SDM is prepared to provide consent for one of the available treatment options.
What is Health Care Consent?
- In Ontario, health care providers have the legal and ethical duty to obtain “informed consent” before giving any treatment or medical care.
- All health care decisions require consent from a mentally capable person or if the person is not capable from their SDM. The only exception is in limited emergency situations as per the Health Care Consent Act.
- In Ontario, written instructions are NOT consent for a health care provider to provide or withhold treatment. Consent must come from a PERSON.
- When the SDM is required to provide consent or the refusal of consent they MUST consider the following, in this order, when making a decision:
- Any Prior capable wishes that are possible and applicable to the health care decision, and
- The best interest of the patient
- Before giving consent to treatment the SDM is entitled to know:
- What the health problems, concerns or issues are;
- The risks, benefits and side effects of the treatment being offered;
- Any alternatives to the treatment being offered; and
- What would happen if the treatment is refused.
How is “best interest” defined?
Your Substitute Decision Maker would have to consider:
- Your personal values and wishes
- Other wishes
- Whether treatment is likely to:
- improve the condition
- prevent the condition from deteriorating
- reduce the extent or rate of deterioration
- Whether the condition is likely to improve, stay the same, or deteriorate without the treatment
- If the benefit outweighs risks
- Whether less restrictive or less intrusive treatment would be as beneficial as treatment proposed
What if I change my mind?
Your wishes about future your health care may also change. It’s important to review your wishes (Advance Care Planning) regularly and to communicate with your Substitute Decision Maker(s), especially if your health changes or there’s a major change in your life.
1. Read this scenario.
Bill and Barbara, an active couple in their mid-60s have four children and 12 grandchildren. There is always something on the go! Bill is still working fulltime as a small business owner and Barb works part-time in a local gift shop. Living in Collingwood, ON surrounded by lots of other people their age, they enjoy a busy social life. Recently, Bill had a stroke which has left him unable to work, walk or speak. Bill and Barb never imagined such a turn of events in their lives. They have never had an Advance Care Planning conversation other than Bill once said, many years ago, that he never would want to live on machines in a hospital. Barb visits Bill every day in hospital but decisions need to be made about next steps.
2. Now that you understand more about Advance Care Planning and Health Care Consent, take a moment to think about why it would be important for Bill and for Barb to have these discussions now with one another and their children. Record your answers before you check the sample response below.
Advance Care Planning is an ongoing process where values and decisions for future health care are discussed and considered. Wishes expressed as part of Advance Care Planning will only be considered if that person becomes incapable of consenting to or refusing treatment or other care. In the future, if the Substitute Decision-Maker is asked to step in, it will be prior wishes expressed in conversation with regards to a person’s values and wishes that will guide the SDM. ACP respects the wishes, values and beliefs including increasing the chance of the person dying in their preferred setting. ACP improves satisfaction with care and decreases potential distress caused by decisions.
Use these additional resources to learn more about the topic of Advance Care Planning and Health Care Consent.
Speak Up Ontario:
Speak Up Ontario ACP Workbook:
Advocacy Center for the Elderly:
Community Legal Education Ontario:
Wills and Power of Attorney