Advance Care Planning

  • Most patients with heart failure will unfortunately die from the disease.
  • When approaching the end of one’s life, having an idea of what to expect and having a plan in place can relieve a lot of anxiety.
  • It is important to speak to your family or loved ones about your wishes now to help ease their distress if they must make difficult decisions in the future.
  • Advance care planning involves taking steps to ensure that your wishes guide your treatment and care if you become incapable and/or unable to communicate these preferences in the future.
  • There are many resources available to help you with advance care planning. Speak to your doctor for more information.

Advance Care Planning

Heart failure is a serious illness. Most people living with heart failure will experience a gradual worsening and will eventually die from the disease. Although doctors may be able to give you a rough idea of your prognosis, it is impossible to predict how long a patient with heart failure will live. 

Knowing what to expect and having a plan in place will help to relieve anxiety for you and your loved ones.  

Advance care planning helps prepare you and your family for decisions they might have to make in the future.

What is advance care planning?

Advance care planning is the process of thinking about and communicating your wishes, values, and beliefs. You consider what is important and makes your life meaningful and take steps to ensure that your wishes guide your treatment and care if you become incapable and/or unable to communicate these preferences in the future.

During this process, a capable person may express:

  • The values and preferences that should guide future decisions about their care in the event they are incapable of making treatment decisions.
  • Who they trust to act on their expressed wishes and make health care decisions in their best interests if they are not capable. This person (or people) is indicated in a Power of Attorney for Personal Care.

Advance care planning includes having conversations with close family and friends about your values and beliefs. It might include discussions about specific medical procedures as well – particularly as you become more unwell. Advance care planning is also about considering the experiences and people that you want around you when you receive care.

Key decisions can include:

  • Identifying your substitute decision-maker (SDM). Your SDM is the person a healthcare provider would consult if you became too sick or unwell to make decisions for your health.
  • How to help your SDM learn about you, your values, and what matters to you so that they are best informed if they are required to make a medical decision for you.
  • Speaking to your healthcare team about your future and preferences, including your feelings about interventions such as CPR.

Did you know that everyone in Ontario has an automatic SDM? If you wish to change the person who would speak for you, you can. You can appoint a Power of Attorney for Personal Care. 

Learn more about automatic SDM’s.

Visit the Advance Care Planning Ontario website for more information on how to do so

Living with Advanced Heart Failure

Caring for someone with Advanced Heart Failure?

You aren’t alone.

10% of the nearly 750,000 Canadians living with heart failure have advanced heart failure. Download our new guide, Living with Advanced Heart Failure: Coping with Symptoms and Uncertainty, for tips on symptom management, self-care, and planning for the future.

Why is advance care planning important?

There are several reasons people find it helpful to prepare themselves and their SDM through advance care planning:

  • It decreases a lot of stress and worry by identifying your SDM(s) before a health crisis and allowing you to have control over who speaks for you.
  • It helps you and your SDM(s) to be more aware and knowledgeable about any of your health conditions and what to expect in the future.
  • It decreases distress and worry for your SDM, as they will be aware of their role, be prepared, and have guidance from you in the event they have to make decisions.

Remember, your SDM(s) do not make decisions for you unless you are not mentally capable of making decisions yourself. Thinking about this now allows you and your SDM(s) feel prepared and informed. 

How do I document my advance care plan?

After you’ve talked with your SDM(s), your loved ones, and even your health care team, you can record your wishes however you want – in writing, through a video or audio recording, or by simply telling your SDM. 

Your wishes are then acted upon by your SDM if they are required to make decisions. They will interpret your wishes in the specific situation and, along with the health care team, help to make decisions that respect your pre-determined wishes, values, and goals. This discussion should be revisited over time as your health, priorities, and wishes change.

Advance care planning resources

In Ontario, there is a workbook that helps guide your advance care planning with information and a set of questions to help you think, prepare, and communicate your thoughts, values, and wishes. 

This workbook is publicly available from the Advance Care Planning Canada website. 

Other resources include: