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Talking about the illness and dying
‘Do I tell him?’ ‘What do I tell him?’ ‘How do I tell him?’ These are some of the most difficult questions for families and supporters. There is no simple answer. Some people don’t want to know, and that should be respected. But most people benefit from clear and straightforward explanations of what is happening to them. Sometimes their situation simply needs to be acknowledged. ‘Yes, you are very ill, and it makes you tired’, ‘No, I don’t think your legs will get stronger’. Honesty is needed, even if the question is extremely difficult: ‘Am I going to die?’ We have often seen how supporters try and make everything sound jolly and cheerful. The person may well respond to such jolliness with a smile, but in fact it often makes them feel confused and lonely inside. They can feel themselves that they are getting weaker, and yet everybody is saying that things are OK.
It is best not to tell any lies, and not to make the person believe that they will get better, if you know that they won’t. You also need to consider that the person may want to do certain things, or see certain people, before they die. Ask yourself, ‘If he knew he was dying, would he make different choices?’
Understanding the implications of the illness is particularly important if the person needs to make choices about having (or not having) certain medical treatments.
You will need to talk about this together with the other people supporting the person, including their family. If different supporters give the person different messages, that is even more confusing!
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.
Community learning disability teams have a range of professionals (e.g. nurses, social workers, physiotherapists) who can support you, the person and their family/friends in a variety of ways. It will help to contact them at an early stage.
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.
Terminally ill patients can be referred to palliative care teams at any stage of their illness. The teams work with people with any diagnosis, not just cancer; it doesn’t mean they will be moved to a hospice.
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