Serious Illness Decision Making
Watch this video to learn more about why you should think about your preferences for care. Dr. Heyland will explain how we can’t always predict how things will turn out, to guide our decision-making – and to help others if they need to make decisions for us. Click on the arrow in the middle of the screen to start watching the video.
What is serious illness?
Serious illness is the kind of illness that requires you to be in the hospital, like a bad COVID-19 pneumonia, a bad car accident, or a major heart attack. You are so sick that you may die, but there is also a chance that you may recover. You may have already thought and talked about your wishes about your care at the end of your life or terminal care. Or you may not feel that planning for end of life or terminal care is important to you because you are not sick or not close to the end of your life. But this is different. We are planning for serious illness, not terminal or end of life care. We want to help you understand how values and preferences are an important part of decision-making about medical care during a serious illness — whether you live or die.
The role of the Substitute Decision-Maker
When you are seriously ill, the doctors will speak to you and explain what is going on and how they might treat you. But most people who are seriously ill are unable to think properly or speak. For example, you may be in a coma, or have a breathing tube. If this happens, doctors will usually turn to your Substitute Decision-Maker, a person who would make health care decisions for you if you were not able to. Your Substitute Decision-Maker should be someone who can communicate clearly with the health care team, and is willing to make difficult decisions for you during a stressful time, even if it is not something that they would want for themselves. Don’t think that your Substitute Decision-Maker will know what is right for you to do by themselves. Part of good planning is to choose your substitute decision-maker and communicate clearly to them your values and preferences so they are prepared to speak on your behalf if you were unable to do so.
Note: The terms Substitute Decision-Maker and Advance Care Plan are used in some areas, but not others – use this chart to find the terms that are used in your province or territory. We strongly encourage you to see a lawyer to have the official forms filled out that name your Substitute Decision-maker.
Watch this video to learn more about how to decide on a Substitute Decision-Maker (click on the arrow in the image below to start the video):
Often, people and their substitute decision makers (SDM) find it difficult to talk about serious illness decision making. But we know that when people take the time to learn, think about and talk about their wishes for medical care, it is really helpful for them, their loved ones and the health care team. They are also more likely to get the care that matches their preferences.
That’s why it is so important to think through your values and your preferences for medical treatments now.
It’s important to remember:
- Just because you want something doesn’t mean you will always get it. The medical treatments you receive depend on your values and preferences, but also your illness, your doctor’s recommendations, and how you are doing. Your health care team will consider your values and preferences and make decisions with you or your Substitute Decision Maker – the person you choose to speak for you if you couldn’t speak for yourself.
- You are not making medical decisions today. You are preparing yourself and your loved ones for a future encounter with a doctor that will go through a process required by health care law of obtaining ‘informed consent’ from you or your substitute. Our goal today is to help you (or your substitute in the event you are not able) prepare to verbalize your authentic values and informed treatment preferences that is foundational to this informed consent process. These values and preferences, and any other issues or questions you might have will be recorded in the “Dear Doctor” letter, the output of the planning process. You’ll be able to download the “Dear Doctor” letter and print it when you complete the “Make a Plan” section of this website.
Determining your preferences
Sometimes when we ask people what medical treatments they would want during a serious illness, they say: “It depends. If I’m going to turn out okay I’d want you to do everything. But if I’m not going to turn out okay, then I want you to keep me comfortable.” Unfortunately, we can’t predict for sure how things will turn out.
It’s a bit like predicting the weather. Some days, the forecast may say there’s a 50% chance of rain. You can’t be sure whether it will rain or not, but you still have to decide whether you take an umbrella or raincoat with you just in case, or whether you stay indoors. It’s the same with your medical care. We don’t always know in advance what might happen, so it’s good to have a plan just in case you become seriously ill, and you are unable to think and communicate. Part of this advance planning involves being really clear about what’s important to you, as your values help determining what your medical treatment preferences might be. In the next section, we will help you see how your values and preferences are related.