Explain HF to people using plain language and reduce the use of medical language.
“Can I explain what is happening? Your heart is a muscle and works as a pump. Its job is to squeeze and pump blood around your lungs and your body. When it does this, it brings oxygen and nutrition to all the parts of your body.”
“For you, the muscle is weak, so the pump isn’t working to push blood into your body. That means that not enough blood is getting to your body, your organs such as your kidneys, your muscles and even to your brain.”
“This is why you can feel weak and tired – there isn’t enough blood getting from your heart to the rest of your body. That is also why your kidneys aren’t working as well – your kidneys need the blood to work properly.”
Discuss with patients and their caregivers the HF trajectory. Describe it according to the specific patient you are meeting with.
“This is the common way that heart failure works. Initially, you were diagnosed and then we started the treatments. Things were stable for a period of time. Over time though, we know that the heart gets weaker and we start to see ups and downs like this where a person gets quite sick and needs to be in the hospital. With a change in medications or sometimes with a procedure like a pacemaker, they can get stronger again.
We always try to find ways to make someone feel better and return to being able to do their regular activities. Unfortunately, over time we aren’t always able to make things better and at some point the heart is so weak that it means a person may be approaching end-of-life because of their heart failure.”
If very advanced HF: “I’m worried that for you, we are closer to this end of the situation. We will keep trying to make you feel well, but we don’t have a lot of ways to change the medications or any surgery to fix the heart.”
If less advanced HF: “I am hopeful we are a way off from this end of the graph, but I think it is important for us to be open and honest about this information. What do you think? How would you like to continue talking about this as I care for you over time?”
Bring up ACP in a neutral way
“Before we finish today, I’ve been asking people if they have heard of something called advance care planning. Can I tell you a bit about it?”