Advance Care Planning

Overview

What is an advance care plan?

An advance care plan is a form. It describes the kinds of medical care you want to have if you're badly hurt or have a serious illness and can't speak for yourself. Advance care plans also let you appoint somebody to make health care decisions for you if you can't make them for yourself. The designated person is called a substitute decision-maker, or a health care representative, agent, or proxy.

What should you include in an advance care plan?

It may be hard to know what to include in your advance care plan . Use the questions below to help you get started.

• Who do you want to make decisions about your medical care if you are not able to?
• What life-support measures do you want if you have a serious illness that gets worse over time or can't be cured?
• What are you most afraid of that might happen? (Maybe you're afraid of having pain, losing your independence, or being kept alive by machines.)
• Where would you prefer to die? (Your home? A hospital?)
• Do you want to donate your organs when you die?
• Do you want certain religious practices performed before you die?

Basic Types of Advance Care Plans

An advance care plan is a legal way to state your wishes at the end of your life. It tells your family and your doctor what to do if you can no longer say what you want.

An advance care plan tells your family and doctor your wishes about life support and other medical treatment. An advance care plan also allows you to appoint a person (called a substitute decision-maker or a health care agent) who can make treatment decisions for you when you can't speak for yourself.

If you do not have an advance care plan, decisions about your medical care may be made by someone who doesn't know you or what you would want.

It may help to think of an advance care plan as a gift to the people who care for you. If you have one, they won't have to make tough decisions by themselves.

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Preparing an Advance Care Plan

If you have decided to write an advance care plan, you have taken an important step to make sure that your health care wishes are met. As you prepare an advance care plan, you will need to follow four important steps.

1. Get the advance directive and proxy directive forms for your province.
   • Forms are different in each province. And they may be called something else in your province. In general, doctors will respect your wishes even if you have a form from a different province.
   • You can get the forms in a doctor's office, a hospital, a law office, a provincial or local office for the aging, a senior centre, a nursing home, or online.
2. Choose someone to be your substitute decision-maker.
   • This should be a person you trust to make decisions for you.
   • A substitute decision-maker may be called something else in your province.
3. Fill out the forms, and have them notarized or witnessed as your province requires.
   • If your province offers an online registry, you may be able to store your advance care plan online. Then authorized health care providers can find it right away.
4. Keep your advance care plan in a safe but easy-to-access place where others can find it.
   • Don't keep it in a safe deposit box unless others can get to it. On each copy, write down where the original form is kept.
   • Give copies to your substitute decision-maker, your lawyer, your doctor, family members, and any other person who may be called if you have a medical emergency.
   • If you are using an electronic copy, be sure your doctor, family members, and substitute decision-maker know how to access it online.

You can change or cancel your advance care plan at any time. Just fill out new forms and get rid of your existing forms. Or you can just let your family, your doctor, and your substitute decision-maker know about the change. If you change or create new forms, give everyone an updated copy. Don't just cross out or add new details unless it's only to change your address or phone number.

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What to Include in an Advance Care Plan

It may be hard to know what to include in your advance care plan if your form doesn't tell you what to address. Many provinces have a unique advance care plan form. (For example, the form may ask you to address specific issues.) Or you might use a universal form that has been approved by many provinces.

You can also use the information below to help you get started.

Making decisions

Who do you want to make your health care decisions for you?

• Do you have a person in mind, such as your partner, a close friend, or your doctor? The person you choose to make these decisions for you is your substitute decision-maker. (That person may be called something else in your province. And in some provinces, the doctor who's treating you can't be your substitute decision-maker.)
• Can you talk to this person about the kinds of treatments you do or don't want to have?
• Does this put too much pressure on the person to make decisions for you? Do you think that this person will be able to do what you ask?

Types of treatment

Do you know enough about the kinds of treatments that can help keep you alive?

• Cardiopulmonary resuscitation (CPR) is used if your heart has stopped.
• A breathing machine that pumps air into your lungs through a tube is used if you can't breathe on your own.
• Dialysis is used if your kidneys stop working.
• A feeding tube or an intravenous (IV) line is used to provide food and fluids if you can't eat or drink.
• Antibiotics are medicines used to treat serious infections.

Life support

How do you feel about the use of life support if you:

• Have a serious illness that can't be cured?
• Are in a coma and there is little chance that you'll come out of it?
• Have a long-term illness that gets worse over time and doesn't get better?

Your concerns

What concerns you the most?

• Are you worried that you'll have pain or be kept alive on machines?
• Are you worried that you'll lose your ability to function and live on your own or that you'll be a burden to your family?
• Are there things that scare you? Include your fears or concerns in your advance care plan.

Quality of life

What does quality of life mean to you?

• Do you want to be able to function and live on your own?
• Are you okay with living in a hospital or nursing home?
• Are you okay with being kept alive by machines?

Do you have any other thoughts about what quality of life means to you and how much control you want to have over it?

End-of-life questions

Here are some other questions to think about:

• Where do you want to spend the last days of your life? Would it be in the hospital or at home?
• Do you have any medical problems right now that affect your way of life?
• Do you have an implanted cardiac device? This includes some types of pacemakers and ICDs (implantable cardioverter-defibrillators). You may want to turn off your device as part of your end-of-life medical treatment.
• Do you want to donate your organs when you die?
• Can you talk to your doctor about end-of-life issues?

Spiritual beliefs

• Do your religious or spiritual beliefs keep you from having an advance care plan? If they do, ask your clergy or spiritual adviser to help you know what to do if you can't make medical decisions for yourself.
• Will you be able to practice religious rituals before you die? In some religions, rituals are done before or after a person dies. If you want certain rituals to be done and know who you want to do them, write them in your advance care plan. For safety reasons, some hospitals may not let you do certain rituals.
• Do you want to include your beliefs and thoughts about illness, dying, and death?

Finding answers

You may find it hard to answer some of these questions. Here's a way to help make things more clear.

Try to picture yourself in each of the situations listed below. Then think about what you would like to happen if you couldn't say what you wanted. As you read through each example, write down any thoughts that come to you.

• What if you had a disease that couldn't be cured? Would you want to be given antibiotics to get rid of an infection, such as pneumonia, that might lead to your death if it's not treated?
• What if you had a disease that gets worse over time and affects your movement or memory, such as Parkinson's disease or Alzheimer's disease? Would you want to be given food and fluids through a tube? If so, is there a time when you would want to stop this treatment?
• What if you were in pain? Would you want to be given strong doses of medicine to ease it, even if they make you groggy and not able to think clearly?
• What if you were in a coma and there was little chance that you would come out of it? Would you want to be kept alive by a machine that pumps air into your lungs through a tube if you can't breathe on your own?

Try this exercise again with a few more "what if" situations. This time you might think about what your doctor says about your chances for recovery and how that might affect what you decide to do. You may see some patterns develop that can help you decide what to include in your advance care plan.

These decisions are tough to make, but you don't have to make them alone. Look to your family, your doctor, your substitute decision-maker, and your friends for help and support. Involve them as you write your advance care plan so they'll know what you want. If something happens that you didn't plan for, they'll have a better idea of how you would want to handle it.

Changing your advance care plan

You can change or cancel your advance care plan at any time. Just fill out new forms and get rid of your existing forms. Or you can just let your family, your doctor, and your substitute decision-maker know about the change. If you change or create new forms, give everyone an updated copy. Don't just cross out or add new information unless it's only to change your address or phone number.

Storing your advance care plan

Keep copies of your advance care plan in a safe but easy-to-access place where others can find them. Do not keep your advance care plan forms in a safe deposit box. If you can't speak for yourself, your family may not know how to access these forms. And don't rely on your lawyer to be able to provide the documents when they are needed. Your family may not know who to contact.

If your province offers an online registry, you may be able to store your advance care plan online so authorized health care providers can find it right away. Give copies of these documents to your doctor, your substitute decision-maker, your family members, your lawyer, and anyone else who may need them.

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