Ageing

5. End of life

5.6. End of life decision making (6a-e)

People with ID have a right to be facilitated in making choices about care and treatment, if possible. There should be no assumptions about their capacity to make decisions due to the label ‘ID’. It is important to remember that people’s capacity needs to be assessed for each situation; it is quite possible for someone to have the capacity to decide on one aspect of care or treatment at a particular moment in time, but lack capacity on another occasion (1:50-52).

A prerequisite for people with ID should be able to make their own decisions is that they are informed of what is wrong with them. In this video Dr Irene Tuffrey-Wijne introduces her new guidelines on how to break bad news to people with ID (5):  

Example (1:52): 

Helping someone decide about life-saving treatment (England) 

A hospital liaison nurse for ID explained: ‘There wasn’t much time to decide whether or not Jennifer should have bowel surgery that would leave her with a colostomy. Without the surgery, she would die, but her family and the medical team weren’t sure whether she would cope with the surgery and the colostomy. They didn’t think that she had the capacity to be involved in the decision and were planning a ‘best interest’ meeting. But I wanted to try, because I thought that with the right support, we could get Jennifer to the point of understanding and making a decision. I find that people with ID often surprise us with their abilities. It took an intensive week of explaining everything in all sorts of different ways. We talked, drew pictures and made models. I took her to the hospital where she could meet a patient who was willing to show Jennifer her colostomy and talked about the operation. The nurses on the ward really helped with this too. In the end, Jennifer decided that she would like to have the operation. And so far, she is coping well with her colostomy. I think it was very useful to think about what bits of information Jennifer needed to understand in order to make the decision, how we could help her understand as quickly as possible, and how we could support her in coping with the knowledge.’ Real - life example taken from “How to break bad news to people with intellectual disabilities”, Tuffrey - Wijne 2013