You might feel unsure about when to ask your questions, or who to ask. There is a list of questions at the bottom of this guide that will help you think about what you want to know, and how to ask Who can I ask? Others told us they found it frustrating. Some people had a good experience speaking to their doctor about their illness. You can tell your doctor how much you want to know. Some people find talking about difficult subjects upsetting and would rather talk about their illness in stages, or avoid the topic altogether. This might give you a better understanding of your treatment options or the likely progression of your illness. Another example is ‘20% of people with this illness live for five years’. For example, they may say ‘90% of people treated with this drug get a good response’. Your doctor might explain things by using statistics. They should repeat it or try to explain it in a different way. If you do not understand something your doctor has said, let them know. It is important to let your doctor know how much information you want, and to tell them if you want to go over something again, or wait until a later appointment. When discussing your illness you may not want to be given all of the information at once. Your choices might be very different from someone else’s. 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. 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. The people we spoke to said that when they asked the right questions it helped them to make informed decisions. Why should I ask questions and make decisions about my illness? 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. The quotes in this booklet have therefore been chosen to show the range of thoughts, feelings and experiences people can have. Not surprisingly, the experiences people shared with us differed greatly. The quotes used throughout this booklet are from the insights they kindly shared. We talked to more than 600 people living with a terminal illness or caring for someone at the end of life. 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.Įxamples 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.
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