The Big Conversation

by Tracy Johnstone Chair, Board of Trustees

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This week it is Dying Matters Week, with an aim to raise awareness and get us to have the #BigConversation with our family members about death, dying and bereavement. It’s not something I thought about much before, until we lost our daughter Eva and you are suddenly thrust into a situation that you have never prepared yourself for, I didn’t have a clue what to do, when or how.

As parents of a child with a life-limiting condition, we are also in the position of planning for Louis’ future and have started to think about formally putting in place an Anticipatory Care Plan for him. We are already having discussions at home about what this means and what sort of information we want to put into the plan. For many parents, even contemplating this process may seem like giving up on your child, but for us we feel it empowers us to have the opportunity to make our choices known to everyone who cares for Louis and if Louis is able to communicate in the future, it would also be an opportunity for him to express his opinion, needs, wants and desires both in life and for the end of his life.

Going through this process we are able to think about all the options for Louis outwith the stressful situation of him being critically ill in hospital or having a sudden deterioration in his condition. During these times you really can’t think and your emotions are on a rollercoaster ride. We can write down our choices in the ACP but we can always change our minds when it comes to making any big decisions. We can also start to think about where we think he would prefer to be at the end of his life and afterwards, what would we need to put in place to achieve that for him, so that we can make it happen.

Most importantly for us, thinking about having an ACP for Louis, is not just about planning for the end of our son’s life, but about what we want to support him doing during his life – what makes him happy, what does he love doing, what will enable him to live the best life possible and what does he need to do that, that’s what really matters, Louis being happy and enjoying life as much as he can with his family, isn’t that what everyone wants. Just because we have discussed dying and end of life, it doesn’t make it happen, we can hopefully just be a little bit more prepared. Having the #BigConversation with your family will enable your loved ones to know what your wishes are.