Why Chris chose to say ‘no’
"Chris chose to have an advance directive, and for her, not having a feeding tube was part of that" - Brian
From diagnosis with MND/ALS Chris did a lot of research into what to expect. For her and her husband Brian, they were at peace with not prolonging her life through certain interventions, including a feeding tube. This decision to say ‘no’ was respected and supported by her care team, while the option to change her mind was still left open.
Brian describes how he and the family cared for Chris, as her ability to eat decreased over time – such as puréed food, keeping a supply of meals in the freezer and how they managed when she had to stop eating. Brian is now an MND Association Visitor, and is keen that everybody has the time to make their own choice about a feeding tube.
There are many reasons why people say ‘no’ to having a tube – there is no right or wrong choice. Thinking about what life will be like without a tube is important, and reading the MND Association’s guides to End of Life care and Advance Directives (see External Resources) can help you to think about how you might manage eating and drinking.