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

2. 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

3. 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

4. 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

5. 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?

6. 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

7. 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

8. 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

9. 1 2 3 Background knowledge What is happening right now
© I Tuffrey-Wijne 2012 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

10. “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

11. 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”

12.
Images taken from: Books Beyond Words

13.
Jessica Kingsley Publishers