Advance Care Planning FAQ

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Here are some common questions about advance care planning:

1. WHAT IF I CHANGE MY MIND? WHAT IF MY HEALTH CHANGES AND/OR HOW OFTEN SHOULD I REVIEW?

Our lives – and the people around us – change over time. You will want to review your Advance Care Planning information regularly to be sure it still reflects your wishes, values and beliefs and that you are comfortable with your choice of Substitute Decision Maker(s). Remember, your Substitute Decision Maker will be asked to make decisions (provide or refuse consent) for you if you become mentally incapable and cannot speak for yourself.

Advance Care Planning is not the same as consent. Even if you have written expressed wishes, health care professionals must still get an informed consent from you if capable, or your Substitute Decision Maker if you are incapable at the time of treatment. As your health changes, you will be asked to make decisions about health care with the full knowledge of your present health condition. The requirement for informed consent is the protection for you even if your written wishes are not up to date.

In Ontario, you can express wishes about future health care and treatment orally as well as in written documents. You can also communicate your wishes using any means that you use to communicate, such as through a computer or picture board. You can make changes to these wishes the same way – orally, in writing or through alternative means of communication. Even if you have prepared a written expression of wishes to help guide your Substitute Decision Maker(s), if you change your mind, you can express your wishes orally, and these wishes will replace any previous written wishes.

The one thing you can ONLY do in writing is appoint someone to be your Substitute Decision Maker(s) (See Question 3 and 4). This can ONLY be done through a written Power of Attorney for Personal Care. Any changes to such a document must also be made in writing (in a document known as a Revocation) and/or by preparing a new Power of Attorney for Personal Care with the changes.

2. WHAT HAPPENS IN AN EMERGENCY IF I CANNOT COMMUNICATE AND THE HOSPITAL DOES NOT KNOW WHO MY SUBSTITUTE DECISION MAKER IS?

Make sure that family or friends know who will act as your Substitute Decision Maker(s) and that they are aware of your expressed wishes – this person (or people) will likely be contacted if an emergency occurs. Carry a wallet card that identifies your Substitute Decision Maker(s) and their contact information. Communicate to those concerned where you have stored any documents such as a Power of Attorney for Personal Care that names your Substitute Decision Maker. You should also tell your doctor who your Substitute Decision Maker(s) is, and you may want to share a copy of your expressed wishes with them too.

In Ontario, you always have a Substitute Decision Maker(s) for health care. The Health Care Consent Act provides a hierarchy that lists who your automatic Substitute Decision Maker(s) would be if you were mentally incapable. If the hospital/health professional cannot locate your Substitute Decision Maker(s) or anyone else on the hierarchy that could step in to act as your Substitute Decision Maker, then the Ontario Public Guardian and Trustee would step in temporarily as your Substitute Decision Maker until the appropriate person can be located.

In an emergency, there may be no time to get consent from anyone. In that case, health professionals have the authority to treat you without consent if it is necessary to do so to relieve any pain or suffering you may have or to address any risk of experiencing serious bodily harm. If your health professionals know of any wishes you have expressed about your care or wishes to refuse consent to particular care, the health professionals must honour those wishes.

3. WHAT IF YOU WANT TO CHOOSE A DIFFERENT SUBSTITUTE DECISION MAKER? COMPLETING A POWER OF ATTORNEY FOR PERSONAL CARE

In Ontario, you can CHOOSE someone (or more than one person) to be your Substitute Decision Maker(s) by preparing a Power of Attorney for Personal Care. The legal requirements for preparing a Power of Attorney for Personal Care are in the Ontario Substitute Decisions Act.

A Power of Attorney for Personal Care is a document, in writing, in which you name someone to be your “attorney.” The word attorney does not mean lawyer. In this case, an attorney is a type of Substitute Decision Maker.

To be valid, the document must: i. be signed by you voluntarily, of your own free will; ii. be signed by you in the presence of two witnesses; iii. be signed by the two witnesses in front of you.

Also, you must be mentally capable of understanding and appreciating what kind of document you are signing and what you are doing by signing such a document. More information about Ontario Powers of Attorney for Personal Care can be found on the websites of the Advocacy Centre for the Elderly , Community Legal Education Ontario and  the Ontario Ministry for the Attorney General.

4. WHO IS YOUR SUBSTITUTE DECISION MAKER ACCORDING TO ONTARIO LAWS?

In Ontario, the law provides you with an automatic Substitute Decision Maker for health care. The Ontario Health Care Consent Act includes a (a ranking list) of Substitute Decision Maker(s). The person or persons in your life that are the highest ranked in this hierarchy and that meet the requirements to act as a Substitute Decision Maker(s) will be your Substitute Decision Maker(s) for health care.

If you do not want the highest-ranking person in the hierarchy list to be your Substitute Decision Maker(s), you must prepare a Power of Attorney for Personal Care. Just because you have listed names of people to be your Substitute Decision Maker(s) in this workbook does NOT mean that these people have the right to act as your Substitute Decision Maker(s). To be your Substitute Decision Maker(s), the person/people must be the highest ranking on the hierarchy list of Substitute Decision Makers or you must name them in a Power of Attorney for Personal Care. If no person in your life meets the requirement to be a Substitute Decision Maker, then the Public Guardian and Trustee, a public government organization, is your Substitute Decision Maker.

Hierarchy of Substitute Decision Makers:

1. Guardian of the person: This is someone that is appointed by the court to be your Substitute Decision Maker.
2. Attorney named in a Power of Attorney for Personal Care: This is the person or persons YOU have chosen to be your Substitute Decision Maker if you prepared this document when you were mentally capable to do so.
3. Representative appointed by the Ontario Consent and Capacity Board: One of your family or friends could apply to the tribunal, known as the Consent and Capacity Board, to be named as your “Representative,” which is a type of Substitute Decision Maker. However, if you prepared a valid Power of Attorney for Personal Care, the Consent and Capacity Board will not appoint anyone even if they apply because the Substitute Decision Maker YOU chose in the Power of Attorney for Personal Care will rank higher in the hierarchy list.

4. Spouse or partner: Two persons are “spouses” if they are

  1. Married to each other; or
  2. Living in a marriage-like relationship and;

– have lived together for at least one year, or;

– are the parents of a child together, or;

– have together signed a Cohabitation Agreement under the Family Law Act.

A Cohabitation Agreement is a document that two people who live together, but are not married, can sign in which they agree about their rights and obligations to each other during the time they live together and on separation. The types of things they can include in the agreement are rights to financial support from each other, ownership and division of property, and the education of their children.

Two persons are not spouses if they are living separate and apart as a result of a breakdown of their relationship.

Two people are “partners” if they have lived together for at least one year and have a close personal relationship that is of primary importance in both people’s lives. This can include friends who have lived together for at least one year in a non-sexual relationship and have a special personal family-like relationship.

5. Child or parent or Children’s Aid Society or other person lawfully entitled to give or refuse consent to treatment in place of the incapable person: This does not include a parent who only has a right of access. If a Children’s Aid Society or other person is entitled to give or refuse consent in place of the parent, this then would not include the parent.
6. A parent who only has a right of access.
7. Brother or sister.
8. Any other relative.
9. The Office of the Public Guardian and Trustee (PGT): They are the decision-maker of last resort if no other person is capable, available or willing to give or refuse consent. The PGT is a government appointed representative.

5. 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 your Substitute Decision Maker;
  • Be mentally capable to make the needed health decisions for you;
  • AVAILABLE (in person or by phone or by some other means) when a decision needs to be made;
  • Not prohibited by a court order from acting as your substitute decision maker and;
  • Be at least 16 years of age.

If the person in your life that is the highest ranking in the hierarchy does not meet these requirements to be a substitute decision maker , then the health care professional may move down the hierarchy to the next person in the list in your life.

6. WHAT IF MORE THAN ONE PERSON IS ENTITLED TO ACT AS MY SUBSTITUTE DECISION MAKER?

If there is more than one person in your life at any one level in the hierarchy, and they are the highest ranking in the hierarchy, they must make decisions together (jointly) or must decide amongst themselves which of them will act as your Substitute Decision Maker. For example, if you have three children (level 5 on the hierarchy), all three are entitled to act as your Substitute Decision Maker. They must act together and agree on any decisions for your health care. If they all agree that only one of them should make decisions for you, then that one child may make decisions for you alone, without talking to the other two, and the health care professionals must take direction from that one child. The health care professionals cannot pick which one of the three should make decisions for you. The three children must decide amongst themselves whether they all act together or which one of them will act.

If there is a conflict among people who are equally entitled to act as your Substitute Decision Maker, and they all want to act, and they cannot agree on the decisions about treatment for you, the Public Guardian and Trustee is required to act as your Substitute Decision Maker instead of any of them. The Public Guardian and Trustee does not choose between the disagreeing decision makers but “shall make the decision in their stead.”

7. WHAT IF MY SUBSTITUTE DECISION MAKER IS NOT ABLE OR WILLING TO MAKE DECISIONS FOR ME?

In Ontario, a Substitute Decision Maker has to be willing and able to take on this role. If the person you have appointed as Substitute Decision Maker in a Power of Attorney for Personal Care is not able to act or refuses to act for you, then the health care professional will use the hierarchy list of Substitute Decision Makers that appears in the Health Care Consent Act (see question 2), going down that list in order, to then find someone in your life that is willing, available, and able to consent or refuse consent to the proposed care for you.

8. WHEN DOES MY SUBSTITUTE DECISION MAKER ACT ON MY BEHALF?

Your Substitute Decision Maker(s) is asked to provide consent or refusal for treatment only if you are mentally incapable of making your own health care decisions. If you have expressed your wishes in this Workbook, your Substitute Decision Maker(s) can use it to guide their decision making, to ensure that care is based on your prior wishes, values and beliefs. If your Substitute Decision Maker is asked to make a decision about a particular treatment and does not know of any wishes you had that would apply, he or she must decide what would be in your best interest based on their knowledge of your values and beliefs.

9. I HAVE A “LIVING WILL.” IS THAT NOT GOOD ENOUGH?

In Ontario law there is no such document called a “living will” or “advance directive”.

The law in Ontario states that a person can express wishes about their future care orally, in writing or by any alternative means. Anyone that acts as your Substitute Decision Maker(s) is required to follow your expressed wishes, if known, however expressed, even if described in a written document. If you previously used any form called a “living will” or “advance directive”, you could consider using them to guide your conversations around wishes, values and beliefs, but they cannot be considered decisions or used as consent to guide your care.

Although you can write down your wishes about future care in any form of document, in Ontario if you don’t want the person(s) who would be your automatic Substitute Decision Maker by law, you can only appoint someone to act as your Substitute Decision Maker by preparing a Power of Attorney for Personal Care.

Remember, it is important that you have a conversation with those who will be asked to give or refuse consent to treatment when you are mentally incapable because they may have questions about your wishes. You should also review your expressed wishes regularly to be sure that it still reflects your feelings, beliefs and values about end-of-life care.

10. MY FAMILY WILL KNOW WHAT TO DO. WHY ARE THESE CONVERSATIONS IMPORTANT?

Talking to your Substitute Decision Maker about your wishes, values and beliefs may provide him/her with helpful information about who you are, and how you make your decisions. While writing your wishes down is not necessary, it is crucial for you to have conversations with your Substitute Decision Maker(s) and family/friends so that they know your values and wishes. It is important to check in with them to make sure they understand what you mean. You may believe that they know what to do, but they may not. For example, you may have said something like “pull the plug if I’m a vegetable,” but this type of statement is too general, and will not be useful for helping someone to make a decision. You will need to be clear about what is important to you, and what makes life meaningful for you. Having conversations with your Substitute Decision Maker(s), family and friends will ensure that your values and wishes are heard, and allow you to answer any questions they might have about what they mean. Writing down your wishes may help guide the conversation.

However, you do not need to write down your wishes for those wishes to be followed by your Substitute Decision Maker(s). In Ontario you can communicate your wishes orally.

11. THESE CONVERSATIONS ARE ONLY FOR OLD AND SICK PEOPLE, RIGHT?

You can’t predict how and when you’ll become seriously ill and unable to communicate. If you are an adult, you should engage in the process of Advance Care Planning. You can change your wishes as often as you like, and as your life changes. But don’t just write it down – the most important thing to do is to have conversations with the person or people who will make decisions for you when you can’t as they will be asked to give or refuse consent to treatment when you are unable.

 

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