We’ve all heard the phrase “informed consent” more than once over the past couple of years, with all of the sexual scandals making headline news, but what about the medical implications? I’ve heard it talked about regarding birth consent, but I would like to share with you my experience and takeaways from the side of a traumatic injury survivor.
Disclaimer: I am in no way making any accusations against any person that took part in my care. I am only speaking from my perspective when I was in an altered state of mind and unable to fully understand all that was going on around me. I am speaking about this to give providers better insight into the minds of their patients, and to let other patients know that they are not alone.
My first experience in which I obviously felt ‘violated’ is one I don’t even remember and is more of a funny story. My nurse woke me up to give me a breathing treatment or suction me or something to that effect- I’m not even sure of those exact details, but I’m sure she’ll let me know when she reads this! Anyways, she realized that she forgot something and had to run out of the room real quick to get it and came right back. She had no idea that I had fallen back asleep or didn’t remember what was going on, and I ‘came to’ while I was being deep suctioned. It’s really difficult for anyone to appreciate a deep suction unless you’ve had it done, but it’s where they stuck a flexible tube into the hole in your neck and go down into your lungs and suck all mucous out that you can’t cough up on your own. I would intentionally try to breathe quietly and not cough because I was so scared of being suctioned. Stacey is a wonderful nurse and someone I now love dearly; I consider her a friend and very important person in my life, but that day (or night) we had a knockdown, drag out couple’s fight because I went nuts on her when I woke up getting suctioned. Stacey didn’t do anything wrong, but in MY mind at the time, I was sleeping peacefully when a tube was shoved down my neck hole (I lovingly refer to it as my blow hole) causing me to panic and not understand what was happening.
I’m skipping a little ahead in my timeline of events if you’ve been following my posts from day one, but now I’m going to talk about what happened while I was in the inpatient rehab facility. Patients who have a spinal cord injury often times have bladder and bowel issues, so monitoring this was extremely important for them. This entailed me trying to empty my own bladder first, and then they would use the ultrasound machine to measure how much urine was left and then they would insert a catheter into my bladder to drain what was left. This was repeated many times a day and night. Because of my injury, I usually wasn’t able to empty my bladder all the way on my own so I was cathed frequently. One night during the middle of the night, a nurse came into my room for meds and to check my bladder again. No one else was there, so I don’t know what efforts were made beforehand to make sure I was awake and understanding what was going on, but this time when I came to, the room was dark, I was completely exposed, and my legs were spread on the bed. The nurse was inserting the catheter into my urethra and I started panicking again. I have no doubt that she was trying to be quick and quiet so I could go back to sleep, but at the time I felt so completely violated and it broke me. Again.
The next morning when my husband came in, I was an ugly crying, snot-dripping, mucous-making nightmare of a human being. I told him what happened, but there was nothing he could do to make the situation any better for me. No one could. My brain wasn’t processing information appropriately; how do you, as a healthcare provider, care for someone like that? It’s like wading off into a minefield because you don’t know what could potentially trigger that particular patient. I don’t even want to use the ‘R word’ because that’s absolutely NOT what this was, but to me, that’s almost what it felt like at the time. After already struggling with my mental health at this point, that little snowball of emotions became my avalanche, and I sobbed uncontrollably for days. I didn’t trust anyone and couldn’t carry on a conversation without breaking down. They sent in a psychologist for me to talk to, and she is the one that started me on Cymbalta, which I still take to this day (now about nine months later). I can’t say enough good things about what this medication has done for me. Within just a few days, I was a different person. My mind was clearer; I wasn’t sobbing all the time anymore and maybe even felt a little bit of happiness for the first time.
There are two things I would like for readers to take away from this story: First, if you ever find yourself in a situation that leaves you or a loved one in the hospital for an extended period of time, know that it is normal and ok to have dark feelings that may not be normal for you. Talk to someone! Sometimes our brains can get sick or injured which can literally change the chemistry- that’s where medication can help! I’m so thankful for the mental help I received because being in the right headspace is paramount when looking at an extended recovery time.
The second take away is directed at healthcare providers. To all of you I would like to first say thank you for all that you do, and all that you did for me. Even with my extensive medical background, I don’t think I ever really understood the extent of my injuries while I was in the hospital- I’m honestly not sure that I was even told, but nevertheless, I did not have a clear understanding of what was going on and I had the memory of a goldfish. Five minutes may as well have been five years to me, and every procedure, every new event that happened was terrifying. Even so, I still think it is important (at least for someone like me) to do your best to make sure that they understand what is going on. You never know what memory is going to stick so do your best to try not to leave them with too many sticky bad memories.
One thought on “Informed Consent”
I love reading your story and your point of view. Hope you and Lee are doing well. Continue to work hard on your recovery and enjoy Life!!!