Let me tell you the story of Paul. I have no idea if this is his real name, we just made a name up for him (we did this a lot during make your own fun in ICU). Paul has been in ICU for about 6 weeks. According to his wife and daughter - his kidneys will never work again, his pancreas is done, he can only breathe with a machine and his heart kept stopping and they shocked him back to life 10 times in a day. His heart is only sort of going now because they put a pace maker in (took 2 tries to even get one to work). Also it is clear his bowels have shut down (will spare you the details). When we spoke to his wife and daughter, even though the doctors have suggested that removal from life support would be the best option, they said they weren't ready. They said they don't know what Paul would want. They had never talked about it. This is family who faced the first medical emergency in 2010, when they almost lost him.
After stopping myself from screaming "pull the plug, he is done, time is up, move on" (hmmmm, can you guess my views on this!) I realized that things would have been easier for the family if at some point outside the ICU had a conversation about "what if". It is not a good or fun "what if", I personally would rather talk about what if we won the lottery, but it is one that I am more likely going to have to deal with at some point, so it is a conversation I need to have. I should say, I have very clear and strong views on what would be acceptable medical care for me. My family knows. I have a living will. I have had this conversation. It is surprising to me how few people do.
If you haven't spoken or checked in with those whose health care you may become responsible for in the event they can't consent, take the time and talk to them. Find out what they want. When do they want a DNR? Do they want their organs donated? Tell them what you want too. Make their lives a tiny bit easier so if a doctor every has to sit them down and have a frank conversation about your life and treatment, they will know they are respecting your wishes. It may not be what they want, but it likely will help them make decisions and not leaving you suffering, like poor Paul.
Thank you for listening to my soapbox. A lighter blog post will appear on Tuesday, I promise!