Options and decision-making at end of life

If you are approaching the end of life, or you care for someone who is, there are a number of options for care under Canada's current laws. Learn about these options and how you can help make sure that treatment is consistent with your final requests, or those of your loved one.

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Options at end of life

Talk to your health care provider, family, friends or other caregivers about end-of-life care options. Options may include:

  • palliative care
  • do not resuscitate orders
  • refusal or withdrawal of treatment
  • refusal of food and drink
  • palliative sedation to ensure comfort
  • medical assistance in dying

Palliative care

Palliative care  aims to improve the quality of life for those living with a life-threatening condition. This type of treatment aims to make you and your loved ones feel as comfortable as possible and can involve: pain and symptom management; social, psychological and emotional support; and caregiver support.

Do not resuscitate orders

You have the option to complete a "do not resuscitate" order. This signed document instructs medical professionals not to perform CPR (cardiopulmonary resuscitation) if your heart or breathing stops.

Refusal or withdrawal of treatment

You have the right to refuse medical treatment, even if it is life-saving.

Similarly, if you are receiving treatment, you can decide at any time to have some or all of that treatment withdrawn.

Refusal of food and drink

You may refuse any food or drink offered to you by others.

Receiving nutrition and hydration by tube is considered a medical treatment. As such, you also have the right to refuse or discontinue this treatment.

Palliative sedation

This is a treatment of last resort when usual treatments cannot relieve symptoms at the end of life. You are given drugs that are meant to ensure that you are comfortable until you die from your illness.

Palliative sedation is not meant to cause or accelerate death. Medications and dosages can be adjusted for different effects, such as a mild calming effect or putting you into a deep sleep. These effects can be reversed if you would like to be awake to visit with family and friends.

You can discuss this option with your health care provider. If you are unable to do so, a family member or substitute decision maker may speak on your behalf.

Medical assistance in dying

Medical assistance in dying is now an available option. Eligible patients can have a medical professional administer or prescribe a substance that will bring about their death.

Decisions at end of life

There are many decisions that need to be made at the end of life. These decisions will reflect your values and preferences for your care. They should also be communicated to your loved ones and other care providers. These decisions include:

  • what kind of care you would like to receive
  • where you would like to receive care
  • who will make decisions if you are unable to make them or communicate them yourself

Health care practitioners are required to ensure that they have the informed consent of a patient before providing treatment. Informed consent requires that you:

  • are consenting voluntarily, free from outside influences
  • have been fully informed about the nature of:
    • your illness
    • purpose of the treatment
    • alternative options to the treatment
    • the risks and benefits of receiving or not receiving the treatment
  • have the capacity to consent

Capacity to consent

You are considered capable of consenting to a treatment if you are able to understand the:

  • information that is needed to make a decision about your treatment
  • consequences and risks of the decision

The health care provider proposing the treatment must assess whether you are capable of giving consent.

You can be found competent to make one decision (what to eat and drink), but not for another (to refuse surgery). You can also be considered capable to consent one day but not the next.

Some provinces have an independent body to determine consent and capacity in complex cases.

Decisions about end of life require your informed consent. If you are concerned you will be unable to consent at the appropriate time, you may want to consider:

  • setting out an advance care plan
  • selecting a substitute decision maker

Advance care planning

Advance care planning is when you talk about possible scenarios around your condition, health and personal care. Your wishes about your health and personal care are then used to create a written plan. This is usually specified in a living will or a written medical or advance directive.

Your written plan will help your health care providers and your family feel more comfortable. They will be more confident in making decisions on your behalf and guiding your care if you become unable to do so.

You can make changes to your advance care plan at any time, even after you have given it to others. If you do make changes, you should share the updated copy with your substitute decision maker and health care providers.

Every province has legislation for advance care planning. However, the laws are not consistent across the country. The terms and forms that are used may differ between provinces and territories.

Speak Up is a useful website for advance care planning. It also posts blogs and personal stories as well as offers information about what is happening across Canada.

Substitute decision maker

If you are incapable of making a health care decision, your substitute decision maker is responsible for making a decision on your behalf. Depending on where you live in Canada, this person can also be called a:

  • medical proxy
  • health representative or agent
  • power of attorney for personal care

A substitute decision maker is someone you trust. They are someone you choose to speak on your behalf if you become too ill to speak for yourself.

You should name your substitute decision maker in your advance care plan. That person should have a copy of your plan. Your health care team will look to this person to help make decisions. They will help guide your care if you are not capable to do so.

Sometimes, substitute decision makers and health care teams are not able to agree on the care needed. In some cases, a provincial or legal process may be used to make a decision.

If the patient has not chosen a substitute decision maker, a close family member or friend may be appointed by the provincial court. If a family member cannot be found, the court will appoint a representative.

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