By Shirley Eason
My husband John passed away in April in Tweed Hospital, NSW. He had suffered with Parkinson’s and Lewy Body dementia for five years – that is when he was diagnosed. He hated what his life had become after having been a very energetic person and on several occasions he asked me to put a pillow over his head, or said “I hope I get my call soon.” He clearly didn’t want to continue his deteriorating life and his wish came true after he had a very nasty fall resulting in the ambulance taking him to hospital where he spent just over two weeks.
The first week he was on a drip, not responding to anything at all. He was not eating or drinking, his mouth was ulcerated, he was incontinent, not opening his eyes, not responding to my talks with him, etc. At this time it was suggested a nasal gastric tube be inserted but we had both stated in our guardianship papers not to do anything that can’t improve the quality of life, so I rejected this and his doctors were in total agreement.
It was at this point that they commenced continual, palliative sedation. I was told this would be peaceful and that my husband would not feel any pain. They said the duration could be anything from a few hours to a few weeks. I really don’t know why I didn’t question that big variation in time but when you are distressed sometimes you are not thinking clearly.
This period of time was absolutely terrible for both my husband, I’m quite sure, and for myself. The ulcers in his mouth continued to get worse, even though they were carrying out oral hygiene each day. His breathing was extremely laboured, he looked far from feeling peaceful and to me it looked like torture.
Each day I would ask the doctor to please do something to help him and would be told his body had to shut down, I was having more time with him and he was not in pain. On the 8th day I begged the doctor to please help him so she doubled his dose of morphine. I do not know if this was the reason he passed away at 4am the next morning, or if something else was done, or if it was just the progression anyway. What I do know is that when my darling husband passed away is when he did look peaceful and out of suffering. I was so sad but also relieved to know that he was now at peace.
Why, oh why, do we have to let our loved ones go through this starvation and suffering at the final stage of end of life when there is absolutely no hope of any recovery or cure? We didn’t let our beautiful dog suffer like this. He was out of his pain and at peace almost immediately.
I am not complaining about the treatment at Tweed Hospital as I can’t speak more highly of the care given to my husband from both the nursing staff and the doctors. They are very special people – I’m only questioning the laws relating to the dying.