Advance care planning - Department of Palliative Care, St. Mary's Hospital

“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 you become incapable of consenting to or refusing treatment or other care. Advance care planning means having discussions with family and friends, especially your Substitute Decision Maker, the person who will speak for you when you cannot. It may also include writing down your wishes, and may even involve talking with healthcare providers and financial and legal professionals.”
– Advance Care Planning Canada: www.advancecareplanning.ca/resource/advance-care-planning-terms/.

Advantages of advance care planning

What it means to be unable to make medical decisions

If you are unable to make your own decisions, or care for yourself or your property, because of a medical situation, then you are considered to be incapacitated. For example, someone who has advanced dementia or who is delirious due to a severe infection may not be able to make decisions about their medical treatment or other aspects of their life. Incapacity is based on an evaluation by healthcare professionals and may be temporary or permanent.

When a decision has to be made about treatment, health professionals always ask the patient if they accept or refuse the treatment that is being proposed. To be able to make decisions about your medical treatment—referred to as “consenting to care”—you must be able to:

Understand the nature of the health situation for which the treatment is proposed.
Understand the benefits and risks of the proposed treatment.
Communicate your decision.

If your health prevents you from making this kind of an informed decision about your care, you are considered to be incapable of consenting to care. In this case, the person you chose to make medical decisions on your behalf (your substitute decision maker) is asked to represent you. If you did not name anyone to make decisions for you, then your next of kin is asked to fulfill this role. Your substitute decision maker has the responsibility to make decisions based on your wishes. This can be particularly difficult for that person if you have not discussed or written down your wishes in advance.

For more information, go to:

educaloi.qc.ca/en/capsules/incapacity-being-unable-to-care-for-yourself-or-your-affairs/

Advance care planning doesn’t mean you’re expecting the worst or giving up hope; it means you’re planning your life to protect your future. It gives you the opportunity to make decisions in advance about what’s important to you—about your medical care, personal care and the management of your affairs—in the event you are unable to do this for yourself. It ensures that you’ve reflected on your needs, values and wishes, and shared them, in the event that medical or personal decisions have to be made for you.

Advance care planning can be a difficult topic. Many people are uncomfortable talking about illness and death, and many may find it difficult to think about what they would want or not want when they do not have a lot of time left. This is completely normal. Advance care planning gives you the ability to maintain some control over what happens to you in the event that a health situation causes you to lose that control. You are, in effect, still influencing the decisions that are made even when you are not medically able to do so. For many people, planning ahead gives them peace of mind. They don’t have to worry as much about what’s going to happen, or that their loved ones will have to make difficult decisions for them.

Advance care planning also involves naming a person (or more than one person) to make decisions for you if you are unable to do so for yourself. This individual is often referred to as a “substitute decision maker” (or a “mandatary” in the case of a protection mandate). You should choose someone you trust to honour and respect your wishes. This person is usually a loved one like a family member or a close friend. It is important to involve this person as you think about your wishes and needs when you are developing and reviewing your advance care plans.

You always have a choice

It is a good idea for everyone to consider advance care planning, whether or not they have health problems. If you are living with a serious illness, you may have already given some thought to this issue.

But whether or not you want to think or talk about advance care planning is completely up to you. Some people feel that talking about something will make it happen; if this also troubles you, it’s alright. We just invite you to consider your options. Try to think of advance care planning in the same way that you would insurance for your car or home—you may or may not need to use it, but it’s reassuring to know that it exists. Making advance care plans is in no way a prediction of how your illness will evolve.

If you are interested in finding out more about advance care planning but are unsure how to begin, approach the subject in the way that makes you the most comfortable. That might be researching the options on your own, talking to family and friends, or talking to a professional, such as a social worker.

Getting started

Advance care planning is a process that must be personalized. Your medical situation, life situations, values, preferences and needs make up a story that is uniquely your own. Your advance care plan will need to be tailored according to your situation, and may need to be updated when changes occur in your life; there is no one-size-fits-all.

The amount of information regarding advance care planning can seem overwhelming, and it can also be difficult to understand the difference between some of the options. Remember that your healthcare team is there to support you. The palliative care team social worker can meet with you to explain the different options and help you identify what is most important to you.

The information in the sections below is designed to be a basic introduction to the topic of advance care planning, to help you get started. Try to encourage loved ones to get involved in the discussion as you review the material. If you are interested in going further, the links in each section will take you to detailed information and instructions, to help you understand the different types of advance care planning and how to prepare them (including if you need to consult a notary or if you need a special form). Many of the resources include videos, which might be an easy way to familiarize yourself with the different options.

Remember that when making an advance care plan, you are usually thinking of the general way that your care should be approached and not necessarily every potential scenario that could occur. For instance, if you are in a situation that is considered to be irreversible and you do not have a lot of time left, then you might decide to request care that is entirely focused on your comfort. With that information, your medical team would know to continue aggressive comfort care, while minimizing any procedures or interventions that could cause more suffering.

Think about what is important to you

Points to keep in mind

It is important to know that no one can force you to agree to, or sign something, that you are not comfortable with.
You can change or cancel your advance care plan(s) at any time, even if you have already expressed your wishes to your family and doctor.
In all cases of advance care planning, you must be of sound mind, be able to make your own decisions, and fully understand what you are agreeing to when you prepare instructions for your care in the event you are unable to make decisions for yourself. This also applies if you want to revise or cancel your instructions.
At this time, a request for medical aid in dying cannot be part of an advance care plan.

Before making an advance care plan, take some time to reflect on your values and what is important to you in life. Some questions you can ask yourself include:

What makes me happy? What activities bring joy or meaning to my life?
What do I worry about or fear if my health starts to decline?
How far would I want medical interventions to go to keep me alive?
What does a life worth living mean to me?
Could I accept someone else doing everything for me—such as washing, feeding and moving me—to live a few months or years longer?
Are there any cultural or religious practices that are important to me?
Would I prefer to get end-of-life care at home or in the hospital?
Who would I want to make decisions for me if I were unable to make them for myself? Is this person aware of my wishes?

Talk to your doctor or nurse practitioner

Your doctor or nurse practitioner can help you understand the kinds of treatments that you would be accepting or refusing in an advance care plan, their benefits and risks, and the medical consequences of certain choices based on your situation. If you are living with a serious illness, it is important to understand what may lie ahead and what kind of care you may need. Your healthcare team can help you understand the possible scenarios and what decisions you may need to make.

Talk to your loved ones

Although it may be difficult to do, it’s a good idea to discuss your values and wishes with your family and friends. It is important that those close to you are aware of your preferences, including who you have named to make decisions for you. Even if you have these details written down, or plan to write them down, telling your loved ones what you want can help reduce doubt, anxiety and conflict, and make the decision process easier.

Know your options

It is always a good idea to tell our family and close friends about your wishes and preferences for your medical care. It is important that they know what you would want if they have to make decisions for you. However, you may also want to consider formalizing your advance care planning, to ensure that your wishes are respected and there is no confusion. It helps to find out about the different options for documenting your wishes, so that you can choose the one that works best for you and that you are most comfortable with. The main ways to formalize advance care plans are described below in the section “Options for advance care planning”.

Resources and tools to help you plan

The Advance Care Planning Canada websites listed below explain what’s involved in advance care planning and why it’s important. They also provide tools to help guide you through the process of developing your own plan.

Advance Care Planning Canada

www.advancecareplanning.ca

This site includes:

Information postcard and video on the five basic steps of advance care planning.
Conversation starters: how to navigate the discussion about advance care planning.
Frequently asked questions (FAQs). If you don’t find an answer to your question, you can send in your own.
Toolkits, workbooks and guides to help you plan.
Videos and webinars on a variety of related topics.
Directory of resources for each province and territory.

My Speak Up Plan

www.advancecareplanning.ca/my-plan/

This is an online, interactive workbook from Advance Care Planning Canada that helps you create your own individualized plan. It can also be used as a conversation guide with your substitute decision maker/mandatary to help them better understand your wishes.

Options for advance care planning

There are a number of ways that you can express your wishes in advance regarding your healthcare, and the management of your affairs, in the event that you are unable to speak for yourself or become temporarily or permanently unable to make decisions. You can:

Verbally inform family members and friends.
Write your wishes on a sheet of paper, and sign and date it. If you want, you can ask someone to witness your signature.
Record a video.

You can also consider more formal types of advance care planning. These are discussed below and include:

Levels of care form
Power of attorney
Wills (including a living will)
Protection mandate
Advance medical directives

A power of attorney and a will are not technically advance care plans, but they are important types of advance planning that are usually part of the discussion. A power of attorney only applies when the individual is still able to make their own decisions.

Note: All of the information provided on this website regarding advance care planning options is specifically for residents of Québec.

Levels of care form

A levels of care form is an official Québec document that indicates your preferences regarding medical care and interventions that you might need now or in the future. Your doctor or nurse practitioner is responsible for completing the form (available in all Québec healthcare facilities).

Your doctor or nurse practitioner will first discuss your care preferences with you and explain the options on the form.
A copy of the form will be placed in your medical file.
It is helpful to have a levels of care form in your medical file even if you have other advance care plans.

More information

The information provided in a levels of care form facilitates communication among the members of your healthcare team if decisions need to be made about your care. It makes sure that everyone understands your preferences and that the care provided reflects your wishes.

Before completing the form, your doctor or nurse practitioner will:

Talk to you about your health situation, and make sure that you understand your condition, including the natural course of your illness, treatment options and possible outcomes.
Explain the different treatment options for your health situation, as well as the advantages and disadvantages of these treatments.
Ask your permission to share sensitive information, such as your prognosis, if it is known, with you and/or your loved ones.
Ask you about your goals for your care, your values and what is important to you.
Ask you if you have expressed any healthcare wishes in other advance care plans, such as a protection mandate, advance medical directives or a living will.

Your doctor or nurse practitioner will then recommend the level of care that fits best with your needs and wishes.

There are four level of care options:*

A. Prolong life with all necessary care. The healthcare team will perform all medically appropriate interventions, and may transfer the patient if the intervention cannot be done on site.

B. Prolong life with some limitations to care. The interventions carried out aim to reverse the deterioration of the patient’s health while preserving his or her quality of life.

C. Ensure comfort as a priority over prolonging life. The care provided primarily aims to ensure the patient’s comfort by relieving symptoms. Interventions aiming to correct reversible health problems may also be performed.

D. Ensure comfort without prolonging life. The care provided essentially aims to ensure the patient’s comfort and relived symptoms.

Your doctor or nurse practitioner will also review with you the potential use of certain interventions like intubation, assisted ventilation, and cardiorespiratory resuscitation. Depending on your medical situation and expressed wishes, your doctor or nurse practitioner will recommend for or against some or all of these interventions.

After the discussion, your doctor or nurse practitioner will fill out the form—writing in your preferences—sign it, and put a copy in your medical file. You can also request a copy for yourself. If you have a copy of this document, you can sign it so that its instructions can be followed by paramedics in the event that your health situation acutely changes while at home.

Regardless of the level of care decisions that you make, you can always consent to or refuse treatment if you are capable; the form does not replace consent. You can also change or cancel your level of care decisions at any time. This information should be revisited if your health situation changes, such as being admitted to the hospital for an acute issue or after having been told about a new serious illness.

* Reproduced from INESSS brochure.

Websites that may help

Québec – Institut national d’excellence en santé et en services sociaux:

Power of attorney

A power of attorney is a document that gives a person you choose the authority to manage your finances and property on your behalf.

Items commonly included in a power of attorney are paying bills and carrying out bank transactions.
A power of attorney becomes invalid if you are no longer able to make your own decisions.
A power of attorney does not include medical care instructions.

More information

Wills

Will: A will is a legal document that contains instructions for the settlement of your estate after your death.

Living will: A living will is a document that describes your wishes for your medical care when you are still alive but unable to make your own decisions.

Will

Living will

Protection mandate

A protection mandate is an official document in which you provide instructions in advance for your care and the care of your personal affairs, if you can no longer make decisions for yourself.

In a protection mandate, you also name a person (or persons) that you trust to take care of you and your affairs in the event you can no longer do this on your own. This person is called a mandatary.
A protection mandate covers a number of items that are not a part of the other types of advance care planning, such as your general wellbeing, child care and your personal affairs (e.g., property and finances).
If you are able to communicate and at least partially able to understand what is being explained to you, your mandatary must also advise and consult you when making any decisions on your behalf.

More information

A protection mandate protects you in the event that you gradually or suddenly become unable to make decisions about your health or your affairs. The decisions made by the mandatary—the person you have chosen to make decisions on your behalf—are guided by the instructions that you have outlined in your protection mandate. Your wishes must be respected insofar as it is possible.

The basic responsibilities of a mandatary are to take care of your physical and mental wellbeing and to look after your affairs (money and property), in accordance with the wishes you have outlined in your mandate. The contents of the mandate are your instructions relating to the responsibilities of the mandatary. The contents of a protection mandate can vary depending on the needs of the individual and the type of mandate used (general or detailed). Below is a list of some of the responsibilities that a protection mandate typically covers and the sort of instructions you can include.

Medical care
- Your wishes about the medical care and procedures that you would accept or refuse if required.
- Your preferences regarding end-of-life care (e.g., not being kept alive by artificial means), organ donation and where you want to live. You can specify that you want to live at home as long as possible rather than moving to a long-term care home.
Wellbeing.
- Your preferences about housing.
- Activities that you would like to continue with as long as you are able.
- Your preferences regarding personal needs, such as food, clothing and hygiene products.
Finances. How you want your finances administered, including:
- Management of your bank account, pensions and investments.
- Payment of bills.
- Support that you would like provided to family members, such as paying for your child’s education.
Property. How you want your property administered, including:
- Property that can and cannot be sold.
- Who can use your property (for example, only family members).
Child care. You can name your mandatary or someone else to act as guardian to your minor children if the other parent cannot take care of them.

A protection mandate only comes into effect if:

You become incapacitated.
A court has confirmed the existence and validity of the mandate. This process is called homologation.
The process of homologating a mandate can take a considerable amount of time and may not be possible if someone who becomes incapacitated has little time left. In this case, the mandatary could still be consulted to help make medical decisions.

You can change or cancel a protection mandate at any time as long as you are able to make your own decisions.

Note: When a protection mandate is homologated, it cancels any existing power of attorney; a power of attorney is only applicable when an individual is able to make decisions on their own.

Websites that may help

Québec Government: www.quebec.ca/en/justice-and-civil-status/legal-protection/protection-mandate#:~:text=The%20protection%20mandate%20is%20a,property%20in%20case%20of%20incapacity. This website includes:

Detailed information.
Link to the official form

Éducaloi: https://educaloi.qc.ca/en/capsules/protection-mandates-naming-someone-to-act-for-you/. This website includes:

Information videos.
Brochures that can be downloaded to print.

Advance medical directives

Advance medical directives in Quebec are specific instructions for your medical care that only pertain to certain scenarios when you are no longer able to make decisions on your own.

Advance medical directives cover three specific medical situations.
There are five treatments that you can accept or refuse in advance medical directives.
Advance medical directives take priority over healthcare preferences expressed in any other advance care planning document. The information is officially stored by the RAMQ and is accessible by all physicians.

More information

Advance medical directives let you accept or refuse certain medical treatments that are considered invasive but could prolong your life. The directives are very specific—they apply to three medical situations and cover five treatments. The wishes you express in advance medical directives are legally binding, which means they must be respected by medical personnel.

Advance medical directives only come into effect if you are unable to consent to treatment and you are in one of the following medical situations:

You have a serious, incurable illness and are at the end of your life.
You are in an irreversible coma (permanently unconscious) and there is no possibility that you will wake up.
You have an irreversible loss of cognitive functions, such as with advanced dementia or Alzheimer’s disease, and there is no chance of improvement.

The treatments that you can accept or refuse in advance medical directives are:

Cardiopulmonary resuscitation. This is a medical intervention—such as chest compressions and mouth-to-mouth resuscitation—to restart your heart and breathing. This is commonly known as a DNR order (do not resuscitate) if the intervention is refused.
Ventilator-assisted breathing. A ventilator is a machine that breathes for you if you cannot breathe on your own.
Dialysis. A dialysis machine cleans your blood if your kidneys are not working.
Forced feeding or hydration. “Forced” means giving you food or liquids against your will, as indicated by your words or gestures.
Artificial feeding or hydration. This means that you can no longer feed yourself and must be given food and liquids by a tube in the stomach or in a vein.

You can change or cancel your advance medical directives at any time as long as you are able to make your own decisions.

Note: Advance medical directives take priority over a protection mandate and a living will, even if these documents are more recent.

Websites that may help

Québec Government: www.quebec.ca/en/health/health-system-and-services/end-of-life-care/advance-medical-directives. This website includes:

Detailed information on requirements and procedures.
Link to the official RAMQ form.

Québec Government – Ministère de la Santé et des Services sociaux: https://publications.msss.gouv.qc.ca/msss/en/document-001603/?&txt=advance%20medical%20directives&msss_valpub&date=DESC. This website includes:

Comprehensive brochure to download and print.

Éducaloi: https://educaloi.qc.ca/en/capsules/advance-medical-directives/. This website includes:

Information video.
Free workshops on planning ahead (https://educaloi.qc.ca/en/workshops/).

Please note that the information provided on this site about power of attorney, wills, protection mandates and advance medical directives does not replace the professional advice of a lawyer or notary.

This content was developed from the following sources:

Canadian Virtual Hospice. Advance Care Planning Across Canada. www.virtualhospice.ca/en_US/Main+Site+Navigation/Home/Topics/Topics/Decisions/Advance+Care+Planning+Across+Canada.aspx. Accessed August 15, 2022.
Éducaloi. Advance Medical Directives. https://educaloi.qc.ca/en/capsules/advance-medical-directives/. Accessed August 16, 2022.
Éducaloi. Incapacity: Being Unable to Care for Yourself or Your Affairs. https://educaloi.qc.ca/en/capsules/incapacity-being-unable-to-care-for-yourself-or-your-affairs/. Accessed August 18, 2022.
Éducaloi. Living Wills: Expressing Wishes for Health Care. https://educaloi.qc.ca/en/capsules/living-wills-expressing-wishes-for-health-care/. Accessed August 18, 2022.
Éducaloi. The Power of Attorney. https://educaloi.qc.ca/en/capsules/power-of-attorney/#tab-1. Accessed August 17, 2022.
Éducaloi. Protection Mandates: Naming Someone to Act for You. https://educaloi.qc.ca/en/capsules/protection-mandates-naming-someone-to-act-for-you/. Accessed August 17, 2022.
Québec Government. Power of attorney (mandate). www.justice.gouv.qc.ca/en/your-money-and-your-possessions/power-of-attorney-and-protective-supervision/power-of-attorney-mandate. Accessed August 17, 2022.
Québec Government. Protection mandate. https://www.quebec.ca/en/justice-and-civil-status/legal-protection/protection-mandate. Accessed January 23, 2023.
Québec Government. Advance Medical Directives. www.quebec.ca/en/health/health-system-and-services/end-of-life-care/advance-medical-directives. Accessed August 16, 2022.
Québec Government. Wills. www.justice.gouv.qc.ca/en/your-money-and-your-possessions/wills/. Accessed January 5, 2023.
Québec – Curateur public. Mandate, will, power of attorney. www.curateur.gouv.qc.ca/cura/en/majeur/client/prevoyant/mandat/type.html. Accessed August 17, 2022.
Québec – Institut national d’excellence en santé et en services sociaux. Care objectives, life objectives. www.inesss.qc.ca/fileadmin/doc/INESSS/Rapports/OrganisationsSoins/Depliant_niveaux-de-soins_ENG_20170111.pdf. Accessed September 6, 2022.
The College of Family Physicians of Canada. Advance Care Planning. www.cfpc.ca/CFPC/media/Resources/Palliative-Care/AdvanceCarePlanning_ENG-Final.pdf. Accessed August 15, 2022.