Isabel wrote to me last week:
I have an 86-year-old father who has only been on dialysis for 2 years, but he’s also battling lung problems-COPD, early stages of Parkinson’s and hypertension. He’s bed ridden and lays on his bed all day long day after day. Sometimes a friend comes over and helps us move him to his chair but my dad gets frustrated that he can no longer walk.
He receives home dialysis given by my sister. Lately, my dad has been acting like a baby, very emotional, crying, and also verbally abusive with my mom and sister and wanting to stop dialysis then the next day he changes his mind and wants to continue. My mom-82yrs old is the one taking care of him and it is becoming very hard for her to do it on her own. I live in a different state and therefore cannot be there to help, and neither my mom or my sister want to put my dad in a nursing or medical facility.
He basically has no quality of life anymore and it is starting to worry me that my mom may become ill too. From your experience, do you think that it’s best that we stop dialysis? His kidneys are not functioning and Dr’s say he will not get any better. I don’t want my dad gone, but I also have to think about my mom’s health and everyone’s well-being. My sister thinks she’s killing him by stopping the dialysis, but I don’t feel the same way. What are your thoughts?
Hi Isabel. It’s obviously a very emotional time for your family right now. Your father is ill, frustrated and cranky, grieving for his lost health and mobility and taking it out on your mother and sister. It sounds like he has good and bad days and on the bad ones, perhaps in anger and exasperation, says he wants to stop dialysis. The fact that he changes his mind later, when he is calmer, more likely reflects how he really feels; he may well be determined to hang on to life for as long as possible, and secretly hopes that things will improve.
Alternatively, he may be serious and is hoping to start a conversation.
I have known several people who have decided not to continue with dialysis, typically on the basis of poor quality of life, minimal prospects for improvement and sometimes just getting too exhausted to go on*. In each case, it was the patient’s decision, usually after much thought and discussion with family.
If you feel you want to do more, get your father’s real thoughts out in the open: raise the stopping dialysis question next time you are all together and start a conversation. It may end abruptly or it may lead on.
In the interim, perhaps the best thing would be to try and arrange some respite care, a few days a week or a month, to give you mother and sister a break, to help them recharge and relax for a while.
Please stay in touch! Regards, Greg
ps: I think this information could be of interest more generally to our readers, so I have also put it up as a weekly post. G
*As a point of interest, the State of Victoria (Australia) yesterday released a report recommending that euthanasia be made legal for terminally ill patients over the age of 18, enduring pain and suffering only, in the last weeks or months of their natural life.