Why is it the right time to plan ahead together?

Here’s a quick guide for planning end of life care with the person you care for. It explores the importance of taking a planned approach and highlights a number of ways in which, together, you can make an advance plan whilst the person you care for has the mental capacity to make their own decisions.

When the person you care for has a terminal illness, it can be an especially difficult time for you too. It will be physically and emotionally demanding with lots of practical things to think about. You and the person you care for may not feel like planning ahead, but there are a number of reasons why it can help:

• It can be a good way to start a conversation with the person you care for about what might happen and to make a clear written record of their decisions about their future care and what should happen in their final days.
• It can make you and the person you care for feel more in control and create a sense of calmness and relief.
• If you and your wider family are clear about the person’s wishes it can also avoid a lot of anxiety and potential family disagreement later on.
• It can ensure professional staff supporting the person you care for and their family knows what is important to them, you, and wider family in relation to end of life care.
• The person you care for may assume that if they are unable to make a decision about their own care and treatment because they lack mental capacity, those close to them such as yourself can make decisions on their behalf but that isn’t always the case. This might be, for example, because the person you care for has dementia and their ability to remember information differs from one day to the next. The person you care for might also have the capacity to make some decisions but not others. They might have the capacity to decide what they want to wear each day but not be able to make a decision about refusing health treatment.