Supporting someone through serious illness or the end of life can be both meaningful and challenging. You may find yourself evolving into this role over time, or suddenly, when a friend or relative reaches out for help. This page explains what it means to be a patient advocate and offers guidance on how to support someone through their care.
What is a patient advocate?
A patient advocate supports someone in navigating their care and communicating with health care providers.
Patient advocates may help with:
- understanding the patient’s overall health and care needs
- coordinating medical appointments
- keeping a record of treatments
- tracking medications
- communicating with health care providers
- managing paperwork or financial matters related to care
A patient advocate’s level of involvement may change over time as the patient’s health and care needs evolve.
If the role is shared, advocates should communicate with each other and stay aligned about the patient’s wishes and care.
Understanding key helping roles
People who support a patient may take on different roles depending on the situation. Two key roles are the patient advocate and Substitute Decision-Maker, which have different responsibilities.
Patient advocate
Patient advocates usually have an informal agreement with the person they support, rather than a legal role with clearly defined responsibilities.
They do not make decisions for the patient. Instead, they support the patient in understanding their options and communicating their decisions. If the person loses capacity, advocates do not automatically take over decision-making.
Substitute Decision-Maker
A Substitute Decision-Maker is authorized in writing to make health care decisions if the patient becomes incapable. This person is usually named during Advance Care Planning, and may or may not be the same person who acted as an advocate before the patient lost capacity.
Different provinces use different legal terms for this role, such as agent, proxy, or representative. Regardless of the title, they are expected to make decisions based on what they know about the patient’s wishes and values.
Getting started as a patient advocate
Obtain consent
Health care providers may ask the patient to give written permission for the advocate to receive personal health information and attend medical appointments.
Access medical records
Patients can ask for copies of their records from each provider, sometimes for a fee.
Learn about the patient’s health history
Take time to understand the patient’s medical history, current treatments, and ongoing care needs.
Learn about patient rights
Familiarize yourself with the rights that patients have within Canada’s health care system .
Communication tips
Clear, respectful communication helps ensure the patient’s needs and preferences are understood.
Helpful strategies include:
- asking questions if something is unclear
- taking notes during conversations with health care providers
- confirming important information or next steps
- sharing relevant changes in the patient’s health or symptoms
As much as possible, include the patient in these conversations so they remain involved in decisions about their care.
Supporting future care
Advocates may also help patients consider and communicate their wishes for future care. They may seek information about Advance Care Planning and end-of-life care options on behalf of the patient.
Taking care of yourself
Advocating for someone who is seriously ill can be demanding, especially when advocates are also caregivers. Taking breaks, seeking support from others, and making time for rest can help prevent burnout. Learn more about maintaining your wellbeing.