This guide is here to help you find information and ask questions, so that you can make decisions about your treatment and care that are right for you. It will help you think through what you want to know, and offers ideas for questions to ask to get the information you need.
It also shares experiences and advice from other people who have lived with terminal illness.
Who is this guide for?
This guide is designed for people with a terminal illness (an illness that will cause you to die), but it can be used by anyone who has to make a decision about their treatment or care, for example if you are living with a serious illness that may mean a big change to your lifestyle.
Examples of terminal or serious illness are cancer, dementia, motor neurone disease, multiple sclerosis, Parkinson’s disease, heart attack, stroke, supranuclear palsy, multiple system atrophy and organ (heart, lung, kidney or liver) failure.
We talked to more than 600 people living with a terminal illness or caring for someone at the end of life. The quotes used throughout this booklet are from the insights they kindly shared. Not surprisingly, the experiences people shared with us differed greatly. The quotes in this booklet have therefore been chosen to show the range of thoughts, feelings and experiences people can have. Sometimes the quotes might contradict each other, but that is because we are all different and each person’s experience of terminal illness is different.
Why should I ask questions and make decisions about my illness?
The people we spoke to said that when they asked the right questions it helped them to make informed decisions. This in turn helped them get the care and treatment that was right for them, and helped them to live well in the time they had left.
Understanding what is going to happen in the future will help you to make plans, and can help you feel in control by giving a picture of what lies ahead.
We are all individuals. Your choices might be very different from someone else’s.