The scenarios involve two people with intellectual disabilities, Jeremy and Christina, who each face the same cancer diagnosis and treatment choices (see box below). However, because of their very different (dis)abilities, the way they are helped to understand their situation has to be different.

A wide range of further examples can be found in the accompanying book, including worked examples of people who have to move out of their current home, and people whose friend and house mate has advanced dementia.

The bad news situation: ‘You have cancer’

You have cancer of the oesophagus (food pipe). The tumour is blocking your oesophagus, so you can’t swallow. There are two treatment options:

(a) An operation to remove the cancer. This would leave you with a permanent PEG tube (a feeding tube that goes through your skin straight into your stomach). You will never be able to eat normally again. There is a chance of around 30% that this will cure the cancer.

(b) Putting in a stent (artificial tube) to un-block your oesophagus. You will be able to eat, but the cancer will still be there, and you will eventually die from this.

Jeremy Wilson is 45 years old and has moderate intellectual disabilities. He lives in his own flat with daily support and has a job in the kitchen of a pizza restaurant, where he chops salads. He has an active social life with lots of friends and is close to his family whom he visits often. He has a reasonable concept of time and some understanding of abstract concepts, including dying. He knows cancer can kill you: his aunt died of breast cancer.

Jeremy has been very tired and has not been able to go to work for several months. He loves his food and has been very upset since he lost the ability to swallow, a couple of weeks ago. He is currently fed through a PEG tube directly into his stomach. Jeremy hates his tube and is longing to eat pizza. Until now, he has not been told that he has cancer. He has an appointment to see the hospital consultant and has been told that his family should come with him for support. His family has been told about the cancer, but not about the treatment options.

Jeremy goes to the appointment with his brother and sister. The cancer diagnosis and treatment options are explained to Jeremy by the consultant and a specialist nurse. The intellectual disability nurse (who has been visiting him at home) is there too. Jeremy can’t really understand what the doctor is saying, but he knows that something serious and important is going on: he hardly ever sees his brother, and his sister is crying. Jeremy’s family does not want the operation. They think that it would be too difficult for Jeremy to lose the ability and prospect of eating altogether, and they think the odds of a cure are too low. They are aware that Jeremy should be involved in this decision if at all possible, and want him to, but they don’t know how to go about it. Back home, Jeremy asks whether he is going to die like his aunt…

Jeremy’s current framework of knowledge is represented by the cluster of chunks. On each arrowed chunk, decide (by hovering over the appropriate button) whether or not you would add this chunk by helping Jeremy understand it IN THE NEXT TWO WEEKS. Once you have completed this, you will be able to read the rest of Jeremy’s story.

Jeremy’s story… continued

…Back home, Jeremy asks whether he is going to die like his aunt. His family explains that not all cancers are the same. His cancer is different from his aunt’s. They tell him that they don’t know whether he is going to die, and that the nurse will visit to help them understand what is happening.

Jeremy’s intellectual disability nurse explains the options to him in several sessions, using props and drawings. Jeremy is very clear that he wants to eat. He doesn’t want to go to hospital or have a feeding tube. Over the next weeks, the nurse explores with him his understanding that this means he will never get better, and that he will die of the cancer. When Jeremy says that he does not want to have the operation, his nurse asks him what he thinks will happen to him if he doesn’t have it. He says that the cancer will stay in his body. The nurse asks him what will happen to him if the cancer stays. Jeremy answers that it means he is going to die. His nurse confirms that his cancer will make him more ill, and that in the end he will die. She asks Jeremy what it means to be dead. He answers: ‘It means you never wake up and you go in a hole in the ground.’ Over the next few days, he maintains that he doesn’t want the operation. The nurse reports to the medical team and his family that Jeremy has the capacity to make this decision, and they abide by his wishes.

The intellectual disability nurse and doctors spend a lot of time supporting and explaining things to the family too. Jeremy’s family reinforces the information from the doctors and nurses. With encouragement and help from the intellectual disability nurse, they start to talk to Jeremy about what matters in his life. They visit him as much as possible and invite his work colleagues and friends.

Jeremy’s family finds his illness very difficult to talk about with him, but they help him by listening carefully to what he wants to do with his life. Everyone involved will explain and support him as his health deteriorates. One day, when he is feeling sick, he asks his mother: ‘Am I going to die?’ His mother knows that Jeremy is taking medicine for his nausea, and that he will (most probably) not die yet. She rings the nurse, who visits the same day. The nurse explains to Jeremy: ‘One day you will die of this illness. But not yet. You are not going to die now. But you are feeling very sick. I will telephone the doctor and ask him to help you with the sickness.’

Several months later, when Jeremy’s health starts to deteriorate and he becomes too weak to get out of bed, he asks again: ‘Am I going to die?’ His mother has understood from the doctor that Jeremy has entered his final days. She says to him, ‘You are very weak now. Your body is worn out. Yes, you are going to die.’ She holds his hand with tears running down her cheeks. Jeremy looks at her for a long time, and then nods. It makes sense to him now. He dies a few days later.

Christina Doherty has moderate intellectual disabilities and autism. She lives in a residential care home. She works in the main office of the residential care organisation three days a week, fulfilling clerical tasks which she enjoys immensely. Christina has no concept of time, and (as far as staff can tell) no understanding of cancer, or of the complexities of illness and the universality of death. She speaks and understands short, simple sentences.

Christina has exactly the same cancer diagnosis and outlook as Jeremy. She, too, is told by the doctor with her family present. She shows no sign of having understood any of the information, although she shows concern for her sister crying.

Christina’s current framework of knowledge is much smaller than Jeremy’s. It is not well supported and there are a number of gaps. She doesn’t understand why she can’t eat or why she needs the feeding tube (and hates it), and she doesn’t really understand why her family has come (but likes this). She is confused and needs a lot of support to help her understand what is going on. She hates changes in routine and wants to go back to her job. She doesn’t want to visit the hospital.

There are not many ‘knowledge chunks’ present, and it takes Christina a while to accommodate and adapt to each new one. There are a number of ‘chunks’ that she would not be able to understand, as they don’t fit her current experience. This includes most information of what will happen in the future. She would not be able to understand that she has cancer and that she may die of this, because she cannot see the cancer and she doesn’t feel as if she’s dying…

Christina’s current framework of knowledge is represented by the cluster of chunks. On each arrowed chunk, decide (by hovering over the appropriate button) whether or not you would add this chunk by helping Christina understand it IN THE NEXT TWO WEEKS. Once you have completed this, you will be able to read the rest of Christina’s story.

Christina’s story… continued

…The decision not to operate is a ‘best interest’ decision involving her family, residential care staff, hospital team and intellectual disability nurse. As time goes by, her family and staff simply add ‘knowledge chunks’ related to Christina’s current experiences. They don’t tell her that she will have to move to a downstairs bedroom until the need for this becomes obvious to her (she can no longer climb the stairs).

When Christina is feeling particularly unwell, she asks ‘Am I going to die?’ Her care staff answer ‘No, you are not going to die now. But you are very ill. You won’t get better.’ They realise that if they said ‘yes’, Christina would think that she would die very soon, and she would want to know exactly when it would happen.

Christina goes into a hospice during her final weeks of life. One day, she asks her sister: ‘Am I staying here now?’ Her sister says ‘Yes. You can’t go home anymore. You are too ill.’ Christina asks: ‘Am I going to die?’ Her sister says, Yes, I think so.’ This makes sense to Christina now. She shows no signs of distress and dies a few days later.