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.