End of life care
How to read the stories

End of life care

Supporting someone who is dying is too difficult for anyone to do on their own. You must have as much help as possible. The general practitioner (GP) should be able to give advice on what is available. District nurses can offer support with changing medical needs, such as help with managing medication at home. They can also help with equipment such as commodes, hoists and wheelchairs.

When someone’s health is deteriorating, they may need to make some difficult choices. Many people will want to stay at home, with the people they know best. Is this possible? Can their carers cope? Some people will actually feel safer and happier in an environment where their increased nursing needs can be better supported, like a nursing home or hospice. But they will probably want to be somewhere close to home so that friends and family can visit them. The most important question you need to ask is: ‘What matters most to this person?’ For example, who are the people they want to have around them? How would they like to spend their time?

Palliative care teams (sometimes called hospice teams or Macmillan nurses) can give specialist advice and support. They visit patients at home, and can help support them to stay at home, if they want. They help with pain and symptom control, and will be able to talk through any concerns you have, including concerns about how to talk to the person, or how to involve their family. Sometimes the person may be moved to a hospice for treatment and care.

How to read the stories

There is no right or wrong way to read the stories.

Some people are not used to reading stories. Start at the beginning and read the story in each picture. Encourage the reader to move through the pages at their own pace.
Encourage the person to tell the story in their own words. You will discover what they think is happening, what they already know, and how they feel. If you are using the pictures to help explain a procedure to someone, you may need to describe or clarify the actions being shown in each picture to help them understand. Try not to challenge the reader(s) or suggest their ideas are wrong.
Some pictures may be more difficult to understand. It can help to prompt the people you are supporting, for example:
• Who do you think that is?
• What is happening?
• How is he or she feeling?
• Do you feel like that? Has it happened to you/ your friend/ your family?
Allow people enough time to follow the pictures at their own pace. Allow time for discussion of each picture.
Some people may benefit from reading the larger story from which the extract has been taken. This will allow them to explore their feelings and experiences in more depth. To buy the complete book, follow the link to the bookshop that appears at the end of the story.