For all of us, understanding has to be built gradually, over hours, days, weeks, months or even years. People understand bits of the truth over time. They may understand some of it instantly, but take much longer to understand all of it. Some people may never understand the full extent of the bad news and the impact it will have on their lives.

 

How do we gain knowledge?

We can gain knowledge in different ways:

  • education (driving lessons; workshops at school about death and loss)
  • explanation (‘this is how a car engine works’; ‘your dad has died’)
  • experience (I am driving so fast that I can’t break in time; Dad is no longer at home with Mum)
  • reasoning (I saw two accidents on the motorway, therefore motorways are dangerous; Dad died in hospital, and now Mum is in hospital, so that means Mum is going to die)

We may think that ‘explanation’ is the crucial aspect of breaking bad news, and we may dread it. How do you tell someone that something unpleasant is going to happen? But in fact, explanations are only one way in which people begin to understand bad news. For many people, whether they have intellectual disabilities or not, ‘experience’ is a much more powerful way of gaining knowledge than ‘explanation of facts’.

Therefore, you could help someone understand that her Dad has died by giving her not only explanations but also deliberately planned experiences (for example, attending the funeral or more frequent visits to Mum’s home, where Dad’s chair is now empty). Even when someone does understand the explanation, it can take time for the theoretical understanding to be turned into practical understanding and expertise.

People who have lost a loved one will be aware of this. You may know in your head that the person who has died is no longer there, but it can take years for the heart to fully comprehend it: ‘I keep expecting to hear his key in the front door.’

Break information down into chunks

Break complex information down into singular chunks of information, and try to establish which of these the person already possesses. A ‘chunk’ consists of a distinct, discrete piece of information. For example:

Breaking bad news down into small, single chunks. An example: Karen Mackenzie

Karen Mackenzie is 23 years old and lives at home with her parents. Her father was diagnosed with lung cancer six months ago and is now entering his final weeks of life. He wants to die at home. The palliative care nurse from the local hospice visits regularly to help manage his symptoms and to support Karen’s family. The district nurse visits every day to help with his nursing care. Karen’s parents are keen that Karen is as involved as possible and that she is helped to understand the situation. The bad news can be summed up as: ‘Dad is going to die.’

Bad news is never simple. The fact that Karen’s father is going to die lies at the root of the past, present and future changes in her life, yet telling Karen that ‘Dad is going to die’ is unlikely to be enough. Knowledge about the situation, which includes the fact that he is going to die, needs to be broken down into very small chunks. This will help us to see what Karen understands already, what she needs to understand now, what she will need to understand as time (and her father’s illness) progresses, and what she is unlikely to understand at all. By establishing Karen’s current ‘framework of knowledge’, it is easier to assess which chunks of knowledge need to be added in order to build it up to a full understanding of her father’s dying. It will also help us to see when Karen is likely to understand that her father is dying: now; when it happens; well after he has died; or never – although it is unlikely that she will never understand it at all. Even if she cannot grasp that he has died, she will probably still understand that he has gone out of her life.

Knowledge can usually be broken down into chunks that fit into these categories:

  1. Background knowledge
  2. What is happening right now
  3. What will happen in the future

1. Background knowledge

Background knowledge is the knowledge someone has already. This can include knowledge, concepts or perceptions that others may think are wrong (for example, ‘All dogs bite’; ‘Dad will live forever’).

Background knowledge is:

  • Knowledge about how the world works:

  • General knowledge about illness, death, our bodies, our homes, people’s jobs:

  • Knowledge about what has happened in our lives:

  • Knowledge about how we, and other people, have been feeling:

  • Concept of time:

  • Our view of the world:

Karen’s background knowledge

It is easy to make assumptions about someone’s background knowledge. Telling Karen that Dad is going to die assumes that:

  • Karen knows what dying means;
  • Karen knows that everyone dies;
  • Karen knows that Dad has been ill;
  • Karen understands that the death won’t happen immediately.

Here are some of the possible chunks of ‘background knowledge’ in Karen’s situation. The more background knowledge Karen has, the more likely it is that new chunks of knowledge make sense to her and that she will understand them.

Filling in missing background knowledge

If chunks of background knowledge are missing, those may need to be given first – if the person is able to understand them, of course. ‘You need kidney dialysis’ will make no sense to someone who has never heard of either kidneys or dialysis. ‘You are ill and you need to go to hospital for treatment’ might make sense.

‘What kind of house do you want to live in?’ will make no sense to someone whose family has always decided everything for them, or who doesn’t know that it is possible to move house, or what kind of houses are available.

2. What is happening right now

Chunks of information about ‘what is happening right now’ are easiest to explain and easiest to understand. Everyone’s ‘framework of understanding’ will include some chunks of information about what is happening right now – even if it is just ‘I am feeling hungry’ or ‘Someone is shouting at me’.

Here are some of the possible chunks of knowledge about ‘what is happening now’ in Karen’s situation.

Some people, particularly those with severe and profound intellectual disabilities, have very limited background knowledge and cannot understand much information about the future. They may only be able to understand ‘what is happening right now’. Complex or abstract information (‘Dad has lung cancer’) will be difficult to understand. To help someone with severe or profound intellectual disabilities understand new information, it has to be broken down into pieces of information about ‘what is happening right now’. This means that complex information, or information about what is going to happen in the future, will be understood much more gradually, over time. The impact of the news needs to be experienced in the here and now. You can help someone understand bad news by making an effort to let her experience changes.

3. What will happen in the future

Information about the future is more difficult to understand than information about the present. Understanding all the possible chunks of knowledge about the future will be too overwhelming for anyone, whether they have intellectual disabilities or not. How many of the chunks of information about the future someone will understand is influenced by:

  • Intellectual capacity
  • Capacity for abstract thinking
  • Concept of time

Here are some of the possible chunks of knowledge about ‘what will happen in the future’ in Karen’s situation.