Exploring the broader meaning of dignity has been very eye-opening.
It is so important that we treat a child as a whole person, and not overlook them as we tend to replay most info to the parents, and in many cases, forget to explain to the child what the side-effects of procedures and medications are. It may be that we feel we are protecting them, but we don’t realize that we are taking away their autonomy and that they are the ones that have to deal with these things. I openly admit that legacy and regrets were not on my radar, but it makes so much sense.
Learning about a dignified death (allowing the child to die in their favourite outfits without tubes where possible) is a very important thing for me that is almost over overlooked.
My biggest issue is inserting NG tubes at end-of-life. Many parents feel that they have lost control and that food is the only thing they understand and can control, so when the option is given by doctors to insert a tube, they are very quick to say yes.
In so many cases though, feeding only causes discomfort for the child. It was interesting to read about autonomy, functional capacity, independence and pride. I feel strongly that the family needs better counselling to fully understand the physiological changes that happen at end-of-life and to remember what their child would want.
So things that may hinder dignity could include: lack of proper counselling and forgetting that the child is their own person and their wants and needs should be taken seriously.
