Palliative care: Preparing and deciding

Preparing for the future

Receiving a diagnosis of a serious illness can be overwhelming. Asking key questions now can help you understand your illness, what to expect, and how to prepare for what comes next.

What to do when facing a serious illness: 3 sets of questions to ask your health care team.

Advance care planning

Advance care planning is something you can do while you are healthy and continue to do after a diagnosis of a serious illness. It is a time for you to:

reflect on your values and wishes
let people know what kind of health and personal care you want in the future if you're unable to speak for yourself

You can record your wishes about your health and personal care in a written advance care plan. This will help your health care providers and your substitute decision maker feel 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:

sign and date it
share the updated copy with your:
- health care providers
- substitute decision maker

Your health care provider will still seek your consent at the time of treatment, in case your wishes change.

Every province and territory has legislation for advance care planning or for designating a substitute decision maker. However, the laws are not consistent across the country. The terms and forms may differ between provinces and territories. It's best to find out which laws and practices apply in your region of Canada when making your plan.

Learn more about:

Advance care planning resources (Advance Care Planning Canada)
Provincial and territorial advance care planning laws and practices (Advance Care Planning Canada)

Substitute decision maker

Your substitute decision maker is responsible for making a decision on your behalf only if you are incapable of doing so on your own. 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. It's important that they know your wishes for your care, as their job is 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 and guide your care if you are not capable of doing so.

Sometimes, substitute decision makers and health care teams are not able to agree on the care needed. In some cases, a provincial or territorial 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 or territorial court. If a family member cannot be found, the court will appoint a representative.

Decisions about your care

There will be many decisions to make when you have a serious illness, especially as the illness progresses. These decisions will reflect your values and preferences for your care. Communicate them to family, friends and other care providers early on and re-visit them on a regular basis. 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

Informed consent

Health care providers must ensure that they have your informed consent before providing treatment. Informed consent requires that you:

have the capacity to consent
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
are consenting voluntarily, free from outside influences

Capacity to consent

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

information 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 (such as what to eat and drink), but not for another (such as refusing 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 treatments 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 and discussing your wishes with them

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 and:

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

Do not resuscitate orders

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

Refusal or withdrawal of treatment

Health care practitioners must ensure that they have the informed consent of a patient before providing treatment. You have the right to refuse medical treatment, even if it might be life-saving. You can also decide at any time to stop some or all of the treatment you already receive.

Refusal of food and drink

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

Receiving food and drink by tube is considered a medical treatment. As such, you also have the right to refuse or stop this treatment.

Palliative sedation

Palliative sedation is when a patient receives medication that keeps them in a sleep-like state to treat difficult symptoms. This is a last resort when other treatments cannot relieve symptoms in the last days of life (less than 2 weeks).

Palliative sedation is not meant to cause or speed up death. The patient is expected to die from their illness and not because of the sedation. It can be offered after talking to a specialist palliative care team.

You will be part of the decision-making process about using this therapy if you are able. If not, a family member or substitute decision maker may speak on your behalf.

Medical assistance in dying

In specific situations, some may be able to choose a medically assisted death. People who meet strict eligibility criteria may request to have a physician or nurse practitioner administer or prescribe a substance that will bring about their death.