1. Don’t avoid the issue

Bad news doesn’t go away, and it is our responsibility to help people cope with it in the best possible way. That includes giving crucial chunks of knowledge at the right time – not simply hoping that someone will pick up the knowledge somewhere, somehow.

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2. Anticipate questions – and anticipate a lack of questions

Anticipate that there may be awkward questions and be ready to answer them if you can. Perhaps think these answers through with someone else first.

Anticipate that someone might ask unrelated questions, talk about something completely different or begin a distraction activity. Do not assume he hasn’t heard you or is not reacting.

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3. Make sure you understand the question

Even something as seemingly clear-cut as the question ‘Am I going to die?’ is not always straightforward. It could mean ‘Am I going to die very soon/today?’ or ‘Am I going to die at all, ever?’ or ‘Am I going to die exactly in the same way as Dad did?’ or ‘Is this illness going to kill me and what is it going to be like?’ In addition, we don’t know what someone means and understands by ‘die’. The honest answer to this simple question could therefore range from ‘yes’ and ‘no’ to ‘I don’t know’. To find out what someone means, you could try asking: ‘What makes you ask that question?’ ‘Why do you think that?’ ‘What do you mean?’ ‘What do you think?’

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4. Be honest (and admit what you don’t know)

You don’t have to tell someone everything you know (remember to build knowledge bit by bit), but you should not tell a lie. Be very aware of the risk that you are paternalistic – it is easy to misjudge someone’s need for information.

Stick to statements that you know are true and that you believe yourself. Don’t say ‘You’re going to live in a lovely new home and you will be very happy there’ if you don’t know for sure (and you won’t) that he will find the new home lovely and that he will be happy. Don’t get into complicated explanations of what happens after death unless you are absolutely sure that you both share the same beliefs about this.

Never pretend that you know something when you don’t. It is OK not to have all the answers – nobody does! However, if the question is important (as most questions are), see if there is anyone else who could answer it: ‘I don’t know. Shall we ask the doctor/the manager/your brother about that?’

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5. Allow feelings of sadness…

It is OK to cry and be upset. People with intellectual disabilities can be very upfront with their emotions. Distress, worry, anger, excitement and happiness can all surface very quickly, triggered by something seemingly minor. It is important to allow it. Remember that it is not you who has caused the tears – it’s the bad news. You can’t, and shouldn’t, prevent someone’s distress, but you should offer support. Often, the best support you can give is simply not to turn away from distressing emotions, and not to try and make them better.

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6. … including your own!

It is also important that you have space for your own emotions. It can be very helpful for people to see that others have sad feelings too. It validates their own emotions and it can bring home the message that the news is bad.

If things become overwhelming for you, just take some time out to regain some emotional balance, and talk some more later. If it remains really difficult for you to broach the subject of the bad news without getting upset, ask others to help you.

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7. People have a right NOT to know

People have a right to know the truth, but they don’t have a duty to know it. Denial, or simply not thinking and talking about the situation, can be a very important coping mechanism. Never force information on someone who doesn’t (yet) want to hear it. Don’t talk about a situation if someone clearly doesn’t want to talk or think about it.

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8. Don’t overdo it

Don’t talk for too long. Tell someone what he needs to know, give him a chance to ask a few questions, and leave it at that. Don’t push it. Do ask yourself, though, whether someone is ignoring the bad news because he hasn’t understood – in which case you need to help him understand more; or because he is using denial – in which case you should respect his need not to think about the bad news.

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9. Repeat the information

Repeat key information at different times and in different ways. This can be with words, pictures, experiences – anything you can think of.

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10. Get expert advice

Don’t hesitate to consult an expert if you feel you need to. Depending on the situation, ask for help from intellectual disability professionals, doctors, specialist nurses, managers or colleagues.

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