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    Step 1: Think

    What Makes My Life Meaningful?

    Learn How to Use The Workbook

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    This section of the workbook will help you think about what’s important to you – and what you’d want people to know if you couldn’t speak for yourself.

    Life can take many twists and turns. Imagine:

    • One day, without any warning, you find yourself in a hospital with a life-threatening illness. You are unable to speak for yourself ‒ you do not recognize your family or friends. Your doctors do not feel that you will leave the hospital alive. Do you want to be kept alive using machines? Does anyone know your wishes? Who will make decisions for you?
    • Your mother has slipped into a coma - and you and your siblings need to make some decisions about her medical care. Which one of you will make those decisions? How do you know if they are the right choices for your mother?
    • Your father is becoming increasingly frail as he ages. His condition seems to change every day, and he's been making regular trips to the hospital. What would happen if he couldn't make decisions for himself during the next hospital visit? Would you be able to make decisions for him based on his wishes? Would you know what to say?
    • You are at the beginning stages of Alzheimer’s, and you know that at some point you will not be able to recognize people or make your own decisions. How will you make your wishes known? Who will make decisions for you?

    The following questions can help you think about your values and beliefs, and what you would like others to know. You can answer as many of the questions as you like, and your answers will become part of your plan summary when you complete your Workbook.

    think

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  • Step 1: Think (continued)

  • Ask Yourself: What's important to me?

    These questions can help you think a bit more about what interventions you would or would not want:

  • How important is it that I be comfortable and suffer as little as possible?
  • How important is it that I live as long as possible?
  • How important is it that I avoid being attached to machines and tubes?
  • How important is it that I be allowed a natural death?
  • How important is it that I respect values of my family when making decisions about my care?
  • How important is it that others respect my wishes for care?
  • How important is it that I am involved in making decisions about my care?
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  • For example, is it important that I be able to: spend time with family and friends; be able to practice my faith; remain active; be able to still do my hobbies.
  • What do I value most about my mental and physical health?
    Choose any of these that are important to you – and add other comments if you wish.
  • What would make prolonging my life UNACCEPTABLE for me?
    Choose any of these that are important to you – and add other comments if you wish.
  • Would I want to be allowed a natural death?
  • Would I want all available measures used to prolong my life?
  • See medical terms listed in Step 2: Learn for specific terms and their definitions.
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  • Step 1: Think (continued)

  • When I think about dying, are there things that I worry about happening?
    Choose any of these and add other comments if you wish.
  • If I were nearing death, what would I want to make things more peaceful for me?
    Choose any of these that are important to you – and add other comments if you wish.
  • Where would I prefer to die?
  • Write down anything that would help others understand and support you at the end of life.
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    Step 2: Learn

    Familiarize Yourself with Relevant Terms

     

    By learning more about medical terms and treatments, and legal requirements, you can make better decisions about your plan. Here are some common medical and legal terms that are important to know.

    Advance Care Plan

    This is a verbal or written summary of a capable adult’s wishes or instructions about the kind of care they want or do not want in the event that they cannot speak for themselves. An advance care plan can be written down or simply told to someone who will likely be asked to speak on behalf of an individual (Substitute Decision Maker) if no Proxy has been named in a legally binding Health Care Directive. It can guide a Proxy or Substitute Decision Maker if that person is asked by a health practitioner to make treatment decisions on your behalf.

    Advance Care Planning

    Advance care planning is a process of reflection and communication, a time for you to reflect on your values and wishes, and to let others know your future health and personal care preferences in the event that a health practitioner determines you are not capable to either make and/or communicate your own healthcare choices. Advance care planning means having discussions with family and friends, especially your Proxy (if you have named one in a legally binding Health Care Directive), or with family and friends who may be called upon to be your Substitute Decision Maker (the person who will speak for you) if a Proxy has not been named in a Health Care Directive. It may also include preparing a written Advance Care Plan, creating a Health Care Directive, and may even involve talking with healthcare providers and financial and legal professionals.

    Allow a natural death

    Medical term meaning decisions NOT to have any treatment or procedure that will delay the moment of death. It applies only when death is about to happen from natural causes, and you would still receive treatments to keep you comfortable (e.g. pain medication, oxygen, etc.). The continuation of nutrition and hydration in the vast majority of cases is not part of comfort measures.

    Blood transfusion / transfusion of blood products

    The transfer of blood or blood components from one person (the donor) into the bloodstream of another person (the recipient). Blood transfusion may be done as a lifesaving maneuver to replace blood cells or blood products lost through bleeding or due to depression of the bone marrow.

    Capable (Capacity)

    A person has capacity with respect to treatment if a person is, in the health practitioner’s opinion, able:
    • to understand the information that is relevant to making a decision concerning the treatment;
    • to understand the information that applies to his or her particular situation;
    • to understand that the person has a right to make a decision; and
    • to appreciate the reasonably foreseeable consequences of a decision or lack of decision.

    Cardiopulmonary resuscitation (CPR)

    Medical term meaning the medical procedure used to restart your heart and breathing when the heart and/or lungs stop working unexpectedly. CPR can range from mouth-to-mouth breathing and pumping of the chest to electric shocks that restart the heart and machines that breathe for the individual. CPR can be useful in some situations, but not in all situations.
    Watch a video about CPR
    Learn if CPR is right for you

    Comfort measures

    Treatments to keep you comfortable (for example, pain relievers, psychological support, physical care, oxygen, etc.) but not to keep you artificially alive or cure any illness. The continuation of nutrition and hydration in the vast majority of cases is not part of comfort measures.

    Dialysis

    Medical term meaning the procedure that cleans your blood when your kidneys can no longer do so.

    End of life care

    This is health care provided at the end of a person’s life. This type of care focuses on you living the way you choose during your last days or weeks. Care provided during this time may be called supportive care, palliative care or symptom management. End of life care addresses physical, psychological, and spiritual concerns and focuses on comfort, respect for decisions, and support for the family. It is provided by an interdisciplinary group of health care providers.

    Feeding tube

    Medical term meaning a surgical intervention to feed someone who can no longer swallow food.

    Goals of Care (GOC)

    A communication and decision-making process that occurs between a clinician and a patient to establish a plan of care usually within an institutionalized setting, that follows a prescribed communication process. It is intended to clarify and document goals of the treatment plan that assures patients’ wishes are met to address relief of suffering, quality of life, support for family and loved ones and end-of-life care.

    Guardian

    The term “guardian” means a person authorized or appointed to exercise powers for a person who is mentally incompetent or is incapable of managing his or her personal affairs.

    Health Care Directive (HCD)

    This is a legally binding document in which you explain, in writing, your wishes about health care and treatment in case a health practitioner has determined you are not capable to either make and/or communicate your own healthcare choices. In your directive, you can appoint another person, called a Proxy, to make health care decisions for you when you are not capable to either make and/or communicate them yourself. Anyone who is 16 years of age or older and capable of making health care decisions can make a directive.

    A Health Care Directive needs to be in writing, and be dated and signed in order to be valid. A Health Care Directive never takes priority over a capable person’s consent

    Your Health Care Directive may be very detailed about what treatments you want or don’t want, or may be a general outline of your values, beliefs and wishes, without details. Your directive will guide your Proxy or Substitute Decision Makers in the decisions to be made about your treatment when a health practitioner has determined that you’re not capable of doing this yourself.


    Learn more about the legal requirements of a Health Care Directive in PEI

    Health practitioner

    A person who is registered or licensed to provide medical treatments, such as a doctor, dentist, nurse, physiotherapist, etc.

    Intravenous (IV)

    Medical term that means giving you fluids or medications through a vein in your hand or other part of your body using a a syringe or intravenous catheter (tube).

    This is a way to give you fluids or medicine through a vein in your hand or another part of your body.

    Life Support and Life-Prolonging Medical Interventions

    Medical term meaning health care treatments like tube feedings, ventilators (breathing machines), kidney dialysis, medications, and cardiopulmonary resuscitation. They are considered medically appropriate care when the goal of care is to continue or prolong life. All of these use artificial means to restore and/or continue life. Without them, you would die.

    Major surgery

    Medical term meaning any invasive operative procedure in which a more extensive resection is performed, e.g. a body cavity is entered, organs are removed, or normal anatomy is altered.

    Organ / tissue donation

    Medical term that refers to allowing organs and/or tissues to be donated in certain circumstances under The Human Tissue Donation Act. Although advance consent is not permitted, a person can register their wishes about donating their organs and/or tissue or state their wishes in a Health Care Directive.

    Palliative care

    Medical term referring to specialized care for people with serious illness focused on providing management of symptoms such as pain, physical stress and mental stress of a serious illness whatever the diagnosis. The care may include medicine, treatments, physical care, psychological/social services and spiritual support, both for you and for those who are helping to care for you.
    Learn more about palliative care

    Power of Attorney

    Allows you to appoint someone to make financial and legal decisions on your behalf should a health practitioner determine that you are not capable of making decisions on your own behalf. In PEI, a power of attorney has authority in relation to finances only and has no decision making authority over health care decisions. (In PEI you will need to do a Health Care Proxy appointment for this purpose)

    Proxy

    The role of a Proxy is to consider your expressed wishes and best interests when treatment decisions need to be made on your behalf. It is a good idea to appoint a substitute/second Proxy who would act if the first Proxy predeceases you or is unable to act. When the decision of a Proxy is required and the directive does not give specific instructions, the Proxy shall make a decision based on your best interests. If you name more than one Proxy, you can indicate how you wish them to act: SUCCESSIVELY (second Proxy decides if the first Proxy is not available) or JOINTLY (make decisions together). If how you wish them to act is not indicated, Proxies shall act successively.

    To be valid, a health care directive must be written, dated, and signed by you. Any Proxy you name must also sign the section of the form where they agree to be your Proxy. If your named Proxy/Proxies have not signed the form, their appointment is not valid.

    If you cannot sign the directive yourself, someone else can sign the directive for you at your direction. If someone else is signing for you, you will also need a witness. The witness can’t be your Proxy or your Proxy’s spouse. You, your signer, and the witness must all be present when your directive is signed.

    Spouse

    In PEI, spouses are defined as two people who are legally married or two people who have lived together in conjugal (sexual) relationship for at least 3 years. Two people who are living together in a conjugal (sexual) relationship and are the natural or adoptive parents of a child or children are considered spouses even if they have not been living in a conjugal (sexual) relationship for three years.

    Substitute decision maker

    A substitute decision maker is someone who makes health care decisions on your behalf when you are not able to do so yourself.
    • It may be someone you formally appoint to make health care decisions for you (known as a Proxy),
    • or it could be someone else who is chosen based on the directions set out in the Consent to Treatment and Health Care Directives Act.
    • If you have formally appointed a Proxy, that is the person who will be your substitute decision maker for health care decisions.
    • If you have not formally appointed a Proxy, or the appointment is not done properly (it has to be in writing, signed and dated, and the person being appointed has to have agreed in writing to do so), or your Proxy is not capable, available or willing to act when called upon to make a health care decision for you, then the Consent to Treatment and Health Care Directives Act provides a list of who can fulfill the role of substitute decision maker for you, and in what priority.
    • A substitute decision maker must be at least 16 years old and be capable of making health care decisions themselves.
    • In addition (except for a Proxy), a substitute decision maker must have knowledge of you circumstances and have been in recent contact with you at the time they are being asked to make the health care decision for you.

    Symptoms

    Medical term referring to signs that you are unwell - for example, pain, vomiting, loss of appetite, or high fever, shortness of breath, confusion, weakness, etc.

    Terminal illness

    Medical term referring to an incurable medical condition caused by injury or disease.

    Ventilator

    Medical term referring to a machine that helps a person breathe when they cannot breathe on their own.

     

     

     

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    Step 3: Decide

    Who Will Speak On Your Behalf?

     

    Depending on the Advance Care Plan you choose, you may be required to complete legal forms to ensure that your wishes are followed. The Advance Care Plan Workbook includes forms that you can complete without the assistance of a lawyer or notary public, which will be legally valid if completed properly. For complex situations, you are encouraged to obtain legal advice to ensure the forms and what you write in them will meet your needs.

    You should decide who will make medical decisions and speak for you in the event that you become too sick and cannot speak for yourself. Think carefully about who you feel would be willing and able to make these decisions for you. This person should be someone you trust. They may be your spouse, or an adult child, or even a good friend.

    It is important to note that the Advance Care Plan is NOT a legally binding document. It is a tool to help you identify your values, wishes and preferences for future health care, which can be used to create a Health Care Directive.

    Completing the Advance Care Plan Workbook may lead you to wanting to make an official Health Care Directive and appoint a Proxy to ensure your wishes are known and are able to be respected should a health practitioner determine that you are unable to make health care decisions for yourself.

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  • Step 3: Decide (continued)

  • Choosing a Proxy

    Your Proxy will make medical decisions for you if you are unable to do so. They also are required to honour and respect your wishes and instructions. Here are some things to consider when thinking about who would be a good Proxy:
    • Do I trust this person(s) to make health care decisions that reflect my wishes?
    • Could this person(s) honour my wishes even if it went against their own values?
    • Can they communicate clearly with my health team and my other family and friends?
    • Can they make difficult decisions during stressful times?
    • Is this person willing and available to speak for me if I couldn’t speak for myself?
    • Have I talked enough with this person(s) so they clearly know what I want and what I don’t want?

    What if I change my mind?

    Your personal circumstances change over time. As long as you are capable, you can change or cancel (revoke) your Advance Care Plan and/or Health Care Directive at any time.

    Make sure you regularly review your Advance Care Plan, and your Health Care Directive, and make sure that your Proxy (if you still want him/her to be your Proxy) is still willing and able to make decisions for you if you are in a situation where you cannot speak for yourself. If you make any changes to your Health Care Directive, it is your responsibility to destroy your old copies, inform anyone you’ve given copies to that you have made changes, and provide them with copies of the updated Advance Care Plan and/or Health Care Directive, requesting that they also destroy any old copies in their possession.

    Before changing or cancelling your Advance Care Plan be sure you have up-to-date knowledge about your current health condition and any new health care treatments available to you.

    Remember that you can change your Health Care Directive at any time. If you make any changes to your Health Care Directive, it is your responsibility to destroy your old copies, inform anyone you’ve given copies to that you have made changes, and provide them with copies of the updated document, requesting that they also destroy any old copies.

    You should consider who will make medical decisions and speak for you if you become too sick and cannot speak for yourself. Think carefully about who would be willing and able to make these decisions for you. This person will be your Proxy. They may be your husband or wife, or an adult child, or even a good friend.

     

    My Proxy Is:

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  • Name
  • Address
  • Add their information here.
  • Health Care Directive

    If you want to specify one person to make health decisions for you, you must complete a Health Care Directive, in which you can appoint another person, called a Proxy, to make health care decisions for you when you can’t communicate them yourself.

  • Download Fillable PDF
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    Step 4: Talk

    Start the Conversation

     

    It’s time to talk to your Proxy, your family and your health care team. These conversations may not be easy – but they will help you and your loved ones know what’s important to you.

    Here are some ideas for how you can start the conversations:

    Conversation Starters

    There are many ways to get the conversation started! Remember, it may take a few attempts to get things started. Don’t feel like you have to have the entire conversation at once.

    Be Straight Forward

    • "I have just filled out a workbook about my wishes for future health care and I want to share it with you."
    • "My health is good right now, but I want to talk to you about what I’d want if I was sick and needed you to make decisions for me."

    Find an example from your family or friends

    • "Does anyone know how Jason’s sister died? No one ever talked about it. I wonder if she died at home or in a hospital?"
    • "Do you remember my friend Frank who was in a coma for a while? I wonder if there was any argument about keeping him on that ventilator?"

    Find an example from your everyday life.

    • "Pastor Jones was talking about our choices for health care if something happened, and I realized that I haven’t told you about my wishes – we should talk about that."
    • "My doctor wants me to think about my future health care and to make an Advance Care Plan. Will you help me?"

    Find an Example From the News

    • "Remember the man who was in a coma for years? I would never want that to happen to me."
    • "That story about the family fighting about their mom’s care made me realize that we should talk about these things so the same thing doesn’t happen to our family."

    Watch this short video to see how others have had the conversation: 

    talk

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  • Step 4: Talk (continued)

  • Do not forget to talk to others too, such as your doctor, other health care professionals involved in your care, your lawyer and other family members or friends. Share with those concerned where you have stored important documents, such as your Proxy. Share the name and contact information for your Proxy(ies) with your doctor.

    You may also wish to share your wishes with your doctor or request that the information be noted in your medical record. This step is important because, if you become mentally incapable, your doctor will be better able to discuss your wishes about your care with your Proxy(ies).

    Keep in mind that, even if your health care professionals document your wishes in your medical record, they cannot use this information to direct your care. Before providing any treatments, they are required to get an informed consent from you if you are mentally capable or from your Proxy if you are not. They will only use your written information about your wishes if you are unable to communicate them to ensure all your health care decisions are fully informed.

  • Who do I want to talk to?
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    Step 5: Record

    Write Down Your Plan

     

    Writing down or recording your plan makes it easier for others to understand what’s important to you, and to make decisions for you if you couldn’t speak for yourself.

    Once you’ve made your plan, don’t forget to share it with others, especially your Proxy.

    record

  • Your Name
  • Address
  • You will need to provide your e-mail address if you would like a PDF of your plan e-mailed to you.
  • My other planning documents:
    In addition to this Expression of Wishes, I have also completed the following documents :(check all that apply and note the location of each document):
  • Please document any other documents you might have here.
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  • Write down anything that would help others understand and support your future health care plan or end-of-life care wishes.
  • This is the final step in completing your Advance Care Plan. Once you click on "Complete My Plan" a PDF version will emailed to you if you provided your email address. If you have not provided your email address, you will be provided with a link you can used to access and print copies of your Advance Car Plan.

    View our Privacy Policy. (This link will open in a new window for your convenience.)

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step1-small Step 1: Think

What Makes My Life Meaningful?

 

step2-small Step 2: Learn

Familiarize Yourself with Relevant Terms

 

step3-small Step 3: Decide

Who Will Speak On Your Behalf?

 

step4-small Step 4: Talk

Start the Conversation

 

step5-small Step 5: Record

Write Down Your Plan

 

Make Your Plan Today

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Substitute Decision Maker Hierarchy

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:

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

i. have lived together for at least one year, or;
ii. are the parents of a child together, or;
iii. 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.