Should John be told that he is going to die? Question for the panel Should John be told that he is going to die?

You have cancer You are going to die There is all sorts of bad news (eg “The disco is cancelled”, “Your support worker is leaving”) But in this study, we talked about death-related bad news You are going to die

It will upset him too much He can’t possibly understand it I am not the right person to tell him His family doesn’t want him to know If he knows he has cancer, he will just give up These are some of the reasons why people DON’T break bad news to people with LD (from Irene’s previous studies) I don’t know how to tell him

Unprepared and untrained They think we are nurses… but we are not! Support staff felt out of their depth when looking after someone who was terminally ill. They were frightened that things would happen and they wouldn’t know how to deal with it. Many felt that they didn’t get enough support from outside professionals. This general fear and worry affected staff’s ability to communicate well with the person with LD. I hope he doesn’t die on my shift I hope he doesn’t die on my shift

How do we gain knowledge? Education Explanation Experience Reasoning How do we help people to build knowledge? What do they already know and how do they learn?

Break complex information down into “chunks” Each chunk is a discrete, singular piece of information That nurse keeps coming to my house Nurses make ill people better Toilets are dirty I have cancer I can’t get out of bed Doris says I am getting worse

Factors affecting: how bad news is broken Intellectual capacity and understanding The people involved and their attitudes towards disclosure (family, carers, friends & professionals) The support available to all involved Breaking bad news is a PROCESS, not an EVENT Knowledge is built gradually

Does the person have mental capacity to understand and make decisions? YES: Break bad news to the person NO: Discuss with carers how best to build understanding NOT SURE: Ask LD professionals to help assess

1 2 3 Background knowledge What is happening right now © I Tuffrey-Wijne 2012 www.breakingbadnews.org 1 2 3 Knowledge chunks to be added Current framework of knowledge Background knowledge What is happening right now What will happen in the future

“You have cancer. It cannot be cured.” I have cancer My family has come I trust the doctors and nurses Having tests and treatments I want to be with my family My aunt died of cancer I am going to die I am confused No day centre today My view of the world I am tired I am going into hospital tomorrow Mum always decides for me Concept of time I feel ill Mum is crying I can’t go back to my day centre I will spend more time in bed Background What is happening What will happen knowledge now in the future

Is the person able to understand this specific piece of information NOW? New information only makes sense if supported by an existing “Framework of Knowledge”

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2010 2013 Jessica Kingsley Publishers www.jkp.com