Every once in a while the palliative care nurse in me fights with the cook, gardener, sketcher, knitter, sewer, hooker, and blogger in me to try to get some air time here at Tall Tales. That leads to a post about serious stuff. This is one of those.
I have recently been involved in the care of several people my age or younger who suddenly found themselves critically ill in one of the intensive care units at my hospital. Seriously ill meaning they had a breathing tube down their throat, were on a ventilator, were not responding in a meaningful way to stimulation, and were beginning to see other problems develop - kidney failure, multiple infections, etc. Both of these people had been up walking and talking before admission to the hospital. Neither ever expected to find themselves here.
Both patients had come to a crossroads. They were at a point of it being very reasonable to ask "do we keep on pushing ahead with very aggressive care knowing that they are unlikely to get back to anywhere near the quality of life they had before this event happened? OR are we at a point when the patient would tell us, if they could, that they wanted to focus on comfort knowing that their time would be short if the breathing tube was removed.
Your weekend assignment is to talk to the person you have named on your durable power of attorney for health care decisions to make decisons for you. Tell them what you would want them to tell the doctors to do about your care in this scenario.
You can NOT say "I don't want to be a vegetable." Why? Because it's never that straightforward. There is ALWAYS uncertainty. Small or medium chances that you might make it. Talk about all those scenarios.
There is no right or wrong answer. It is as equally acceptable to proceed with every treatment option you are offered as it is to stop all treatments. The important thing here is not to make your loved one have to guess what you would want. How much would you be willing to endure to get better? Is it ok with you to stay on a breathing machine for weeks or months? Are you ok with getting a tracheostomy and a feeding tube? What degree of disability are you willing to put up with? Do you need to be able to recognize and speak with your family to have a good quality of life? If you can not communicate with your family are you ok with living in a nursing home for months or maybe years with the hope that you might improve? Would you have to have a 50% chance of recovery or is 5-10% chance ok?
None of us is getting out of here alive. We are all going to get our tickets punched sometime and life on earth will be over. I personally want the non-stop flight when I get seriously ill. I do not want any long layovers in a hospital, rehab center, long term acute care hospital, or nursing home. Even if my family is told that there is a high percentage that I will come out of it and be able to have some kind of meaningful quality of life. I am taking the first ticket I am handed. This means that if I have a wreck on the highway and end up in the ICU on a breathing machine and I am not responding in a meaningful way and it looks like I might have a long road of recovery ahead of me I am NOT to be left on that breathing machine. Take it out and make me comfortable and let me die. No matter if the doctors tell Chris I have a 50% chance of getting better. I know a lot of people who have died. I am not afraid of being dead. I am afraid of suffering.
What else do you want to know about the kinds of choices you may have to make? What terms have been thrown at you that you are not sure you understand? This post is not meant to make you take the route I have selected for myself. It is about helping you understand what choices you may face and talking about it before it happens.
If you want to download your state's advanced directives form go here.