JAMA - A Piece of My Mind
Doug Mounce
Some of these are well written...
http://jama.jamanetwork.com/article.aspx?articleID=2533071
A Hand to Hold
The day my 85-year-old father died of metastatic renal cell cancer, I walked into his room in the nursing facility to find the sheets and blankets on the floor and him looking as though he meant to get out of the bed.
“I want to stand up,” he said.
“Dad, are you uncomfortable?”
He was gazing through the open slats of the window blinds, something he had not done for all the weeks he had been there.
“Is there grass outside? I just need to walk around.”
“Dad, you haven’t been able to walk for a while. Why don’t I reposition you in bed so that you’re more comfortable?”
He closed his eyes and nodded in agreement.
I went out in the hallway and a nurse came to help me. As we repositioned him, I saw new bandages on his back covering bedsores that had not been there just days before. The nurse got new linen and we covered him up.
“Charlie, you comfortable now?” the nurse asked, and when he nodded yes, she left.
“I’m thirsty,” he said, looking at a cup on his bedside stand. “What’s in that?”
I took off the lid. “Apple juice,” I said.
“I love apple juice,” he said.
“Here you go,” I said, placing a straw in the cup and holding the cup steady for him.
He had drained about a third of the juice when he gagged and spit onto his bedsheet.
I pulled the cup away. “Spit it all out,” I said, thinking: Shit, he might have aspirated. He looked complacent, not frightened or uncomfortable, just stalled in mid-swallow. A trickle of juice drained from his mouth. He felt the wet sheet and seemed annoyed at the wetness. “Get me a towel,” he said. I got one, wiped his face, then took another towel and wrapped the wet portion of the bed sheet.
“Do you want to rest?” I asked. He nodded yes. I sat down at his bedside and held his hand. He looked at me, smiled his sheepish smile, and closed his eyes.
Then the coughing started. Not much, maybe six or seven coughs spread over five minutes, sounding muffled and very weak. And I thought: He’s aspirated.
Between coughs, as I held his hand, he rubbed his thumb against my fingers. Then he stopped moving his thumb.
Now he started to breathe deeply with an even rhythm. I looked up at his face. His eyelids had parted and his eyes were rolled upward.
I thought and felt several things simultaneously. Oh crap, this is it, this is how this happens. Apple juice, of all things. Should I go get a nurse? I don’t want to leave him, and I don’t want them to do anything anyway, he is comfortable. This is what is happening: He is dying.
I called my brother, who was driving back from Pittsburgh, and told him that Dad had suddenly gotten worse. I wasn’t sure how long he was going to live. My brother was about two hours away and would come straight to his bedside.
I thought: Focus. I need to stay here with him. Just be here. I started to breathe in any sense of discomfort that I felt he might have. There was so little of that. I breathed out all the calmness and comfort I could offer. I sat there with him, breath after breath.
Ten minutes passed. His breathing was deep, regular, unlabored. Then an aide came in to serve lunch. I remained seated, holding his hand. The aide blurted out: “Oh my, he looks bad … I’m going to get a nurse.”
Seconds later the nurse who had helped me reposition him entered with the aide. “Charlie, Charlie, can you hear me?” she said to my dad in a loud voice, shaking his shoulder. He did not respond, remaining unruffled. The nurse turned to me: “What happened?”
“I think he aspirated. He seems very comfortable. Remember, he has a DNR/DNI/do not hospitalize order. We can remain calm.”
The nurse looked at me. She was clearly flustered. “I’m going to put oxygen on him.” As she positioned the nasal cannula on his face, the aide wrapped his arm with the blood pressure cuff and clipped the pulse oximeter on his finger. I don’t remember the exact readings, something like 135/80 and 88%. Holding on. The nurse said, “I’m going to tell the supervisor,” and she and the aide left.
Within a minute or two, the intervals between the breaths became irregular. I resettled my attention fully on him, holding his hand, breathing in any trace of fear or anxiety or loneliness that might be within him (although I could sense none of these feelings), breathing out all the love and calmness I could summon.
I heard someone enter the room. The supervisor. She was clearly upset and agitated.
“He aspirated,” she told me, in the tone of neither a question nor a statement. She looked at the pulse oximeter, which now read 44%. “He is not doing well. I’ve called 911.”
“No,” I said, standing up. “He has a DNR/DNI/do not hospitalize order.”
“The order isn’t clear,” she said.
“Really,” I said. “Well, I’m his son and I have power of attorney, and he is not being transported to the hospital. I see that he is dying, but he is comfortable, and that is what matters.”
She did not look happy. “OK, you are his son and power of attorney, but I’ve called 911 and they are coming. You can sign and turn them away when they arrive.” She left the room.
I sat back down. Now my thoughts turned to how overscripted this whole chain of events was—but I didn’t want to get lost in this woolly story line. I wanted to be here, right here, with him. The clock was ticking, and ticking down. I returned to breathing with my dad.
The supervisor walked back in, this time carrying the green POLST form in her hand. I stood up. “See,” she said pointing at the form, “here it says, ‘Do not transfer to hospital unless his comfort needs cannot be met.’ That’s not clear.”
I looked at her and then looked back at my dad. “Well, his comfort needs appear to be being met.”
Outside the doorway, I heard the crackle of a walkie-talkie. The medics had arrived. The supervisor walked out to them. I sat back down.
Reconnect. I held his hand. My dad was now having much longer pauses between breaths … still a smooth brow … no nostril flaring … comfortable. In and out. Pause. Repeat. Stay.
Then I said, in a muted voice — “It’s OK … you can go … you are loved … you will be missed … it’s OK.”
The medics walked in. I said, “My dad has advanced cancer, a DNR/DNI and no hospitalization order. I hold his power of attorney. He is comfortable, and we’ll stay here. I do think he is about to die, so could I have a few minutes with him?”
“Sure,” one said, turning to the door.
“Why did they call us?” asked the other.
“Idiocy,” I blurted out, then paused, and after a quick sigh, added: “No. They panicked. I understand. But we can stay here.”
He followed his partner to wait outside.
My dad was now not breathing more than he was breathing, the pauses had grown so long. I was surprised how quickly he was succumbing, but then thought of how weak he had become. In, out, pause … in, out, pause …
Then, there was only a pause that grew longer until that pause became permanence.
After a minute, I stood up and kissed him. I let go of his hand, with the endless reluctance of a last good-bye, and turned to the door.
The medics were right outside.
“I think he just died.”
“Do you want me to check and pronounce him?” one medic asked.
“Yes, please, thank you.”
The other medic held a computer tablet in her hand. “I am sorry to ask you this, but can you sign this here? It says that you declined transport.”
I scribbled my signature and walked back into the room as the medic walked out.
I stood near the bed. The supervisor walked back in.
“I’m sorry, the order, it was not clear …”
I interrupted her. “It’s OK.” I opened my arms and she stepped forward and accepted my hug. “It’s OK,” I said again, “I understand how hard this is. He is at peace now.”
I don’t remember what followed clearly. I know that I sat again at the bedside. I called my brother and told him. We made plans to meet together to tell my mom. I looked around the room, at my dad’s eyeglasses on the tray table, at his sneakers with the Velcro closures in the corner.
And at some point, somehow, I walked away, stepping into a world that would never be the same.