Betrayal.
But their existence will float away And just like every word they say And we will hold hands as they fade
- Avett Brothers
The day I let you down, should have been like every other day. Should have been straight forward and we should have done what you needed. We should have done what you wanted. Instead I let you down.
We had known each other for a while. You were the sweet lady that huffed and puffed to breathe after a lung transplant that left you with really only one viable lung. You had a sweet smile and you knew me on sight. I would come by your room when you weren’t my patient and say hi and chat for a moment. You were a tiny lady with a big beautiful heart.
Two days ago I was assigned to you. You called me by name and we spent the day arguing about whether you would get to drink or not. You couldn’t so I put a feeding tube in and tears formed in your eyes as I did. I apologized profusely and you smiled weakly at me. Half way through my shift you called me into your room and gripped my hand.
“I’m not.. gonna… make it.” You said between breaths. You stared at my face as you said the words. I looked at you in surprise and quickly reassured you a best I could. Your numbers all looked good. Stable. You looked at me resigned and nodded as I told you that you were improving. You asked to go on the bipap so you could rest and I tucked you in.
The next shift- you told me you wanted to be done. You told me to turn everything off and take all your tubes out. There was no mistaking what you were asking. I talked to you at length about it. I asked if you knew what taking all of that away meant- you nodded and asked me to help you. I squeezed your hand and told her I would talk to the doctors and your family. Hours later- your daughter, despite hearing your pleas that you are tired and wanted to rest and be done, told the doctors to do everything. Despite the fact that your head shook a violent “NO” when asked if you wanted intubated if need be- your daughter said yes. Despite my telling the doctor that you had appeared to be in your right mind for me, they labeled you confused. I hung my head when they told me what they decided. I avoided the room for a few hours because what could I possibly tell this sweet soul that I had promised to help?
I snuck in as you rested, your breathing labored and the bipap obstructing most of your face. I turned around and your eyes opened. You waved me over to you and I hesitantly walked to your side. You mumbled something through the bipap and I leaned closer to hear you. You tried again and I apologized for not understanding. You shook your head in frustration and I popped the bipap off so you could tell me. “When are you going to release me from all this? When are you going to let me go?” You said in between your labored breaths, your hand gripping mine. “When are you taking the tubes away?” I stared at you and squeezed your hand. I didn’t know what to say to you other than the truth. “I can’t…” I said my voice on the verge of breaking. “Your daughter… your family…They want you to keep fighting. They want everything done. The tubes have to stay.”
The look on your face when I spoke those words to you made my heart physically hurt. I didn’t know how else to tell you that you had been betrayed. By your family… By your doctors…By me.
You shut your eyes and laid back on the pillow. The family members that had been left to “encourage” you, stood awkwardly to the side. I straightened your lines, pulled your blankets up and was about to go when you raised your hand. You set it gently on my arm and looked at me. “Thank you.” You said loud enough that the bipap didn’t smother it. I squeezed your hand and we shared a moment. I didn’t look at your family. I looked at you, my eyes glistening with the same frustrated tears that mirrored in yours. I nodded and you closed your eyes. The day I let you down, should have been like every other day. Should have been straight forward and we should have done what you needed. We should have done what you wanted. Instead I let you down.
So angry right now. I haven’t been stuck in an end-of-life family disagreement for a decade, but every single frustrated moment is rushing back to mind, and I am incensed that this situation still happens in our society frequently, mainly due to lack of communication between doctors+patient+family about end of life matters BEFORE reaching that point.
Help break the cycle: get everyone in your family to talk about advance directives. More info on making an advance directive (in the US, anyways) here.
