Full Code
Reaching East, 9 x 12 Acrylic on paper, 2024, by Helen Ries
Just two years into my journey as a caregiver for my brother, he needed emergency and possibly catastrophic surgery.
It happened very suddenly. We were happily on summer vacation when I noticed something wasn’t quite right. We quickly made our way to our doctor’s office, and she gave me the following instructions: “Go immediately to emergency. Don’t stop anywhere first. I am going to call them and let them know you are on your way.”
“Go immediately to emergency, don’t stop anywhere first. I am going to call them and let them know you are on your way.”
I did as she said, and within hours, my brother was prepped for emergency surgery. As I sat, confused and crying in my brother’s hospital room, an unfamiliar doctor came by. She had come to tell me that they didn’t have any instructions on file regarding a Do Not Resuscitate (DNR) order.
I didn’t really know anything about making this kind of order. I had only seen it on television and in the movies, where the order to “not resuscitate” was often mentioned. I had similar experiences with my parents, both older and critically ill, but the decision was made in consultation with doctors based on all the information collected during their hospital stays.
Through my tears, I told the doctor that the order was “Do Not Resuscitate.” She gave me a stern look, and whether she meant it or not, I felt she was dripping with judgment as she informed me that normally, a DNR order was not given for someone as young as my brother. I gathered from her tone that my decision was incorrect. Her disgust seemed to imply that I was making this choice solely because my brother is developmentally disabled; had he been able, I wouldn’t have made that choice.
I quickly changed my answer. “Yes. Sorry. Please resuscitate him.” Of course, I wanted them to resuscitate him; he is my only living blood relative. I need him. I love him. We have many years of life to live together.
Without further comment, she quickly left the room. I felt deep shame. I hadn’t understood. I didn’t know. I had never had to make that kind of decision before.
Last week, my now healthy and vibrant brother went to stay at a senior residence so I could go on vacation. He loves it there. He considers himself a senior and enjoys being with “his people,” the other seniors. He loves the activities, especially the activities coordinator, Roberto, who makes a big fuss over him. We both love that residence; the joy they bring my brother helps me to relax while I’m away.
Paul riding his trike through the neighbourhood.
photo credit: Helen Ries
Just before leaving for vacation, my email pinged. It was from the senior residence, with the subject line “Advanced Care Planning.” I was to choose a full code or DNR in case of emergency. “Please kindly review and sign,” the email said.
I often think about the incident at the hospital, mostly because I felt so much shame and was deeply misunderstood. The email from the senior residence reminded me of it once again. This time was different; there was no critical situation, just clear choices with explanations and my past experience to guide me. It also felt surreal since my brother was doing well and nothing was likely to happen during his short stay there. Nevertheless, it was difficult to send in the instructions.
“Being asked to make decisions about DNR orders, without adequate information or guidance, transforms the already difficult task of caregiving from just being hard to being soul crushing.”
Being asked to make decisions about DNR orders without adequate information or guidance transforms the already difficult task of caregiving from just being hard to being soul-crushing.
I wish I could rewrite that moment in the hospital. Knowing what I know now, I could have salvaged a little part of my soul.
