My mother-in-law had End Stage Renal Disease and was on dialysis for several years. Her health deteriorated to the point that she had to be placed in a nursing home. She had decided that she did not want to live to the year 2000 so shortly after Thanksgiving 1999 she began refusing to go to dialysis. The doctor and staff were able to talk her out of that but just before Christmas she refused dialysis and all medications including pain meds. She had osteoporosis as well.
When the nursing home staff notified us of her refusal of all treatments, I paid her a visit and had a little heart to heart. I asked her if this was what she really wanted and was she fully aware that she would suffer a very painful death. She said she was tired of all of it and believed that if she refused her medications she had to refuse her pain meds as well. I asked if she had thought about her children and grandchildren and how it would affect them to watch her die a slow painful death and especially at Christmas time. She said she had not thought about that and she agreed to wait a few days until after Christmas to discontinue her medications and dialysis. I understood her desire to end her pain but wanted her to have options available. I left the nursing home and called Hospice for assistance. I asked Hospice to visit her and talk with her about options.
Hospice went to the nursing home and immediately began working with her and the staff to proceed with her end of life plans without talking with her first. That didn't sit well with me but that's another story. My mother-in-law was relieved to learn that she didn't have to give up her pain medications just because she refused all other treatments. As a result, she was able to spend her last days being comfortable instead of in agony. She past peacefully on January 9, 2000.
The moral of the story is that as caregivers we can get so wrapped up in doing what the doctors want without listening to what our loved one wants. At the same time our "patients" may not be looking at all the consequences of refusing to follow doctors' orders. If at all possible we need to have open and honest conversations with our loved ones about what they want. They may be afraid to discuss their end of life plans because they don't want to hut us.
I was the caregiver for my father, mother-in-law and mother. It is very hard to become the "parent" of a parent.