Jerry had been on our floor for a little over a week, maybe a bit longer. And he wasn’t getting any better. In fact each day he seemed to get worse. Small gains would be erased by further declines. The anitbiotics weren’t doing their thing. He was lucky to keep his O2 sats above 90% even on 10L high-flow nasal cannula. It seemed like all he had to do was turn his head and he would de-sat into the low 80’s and take 10-20 minutes to come back up.
Unfortunately for Jerry his run with usual interstitial pneumonia was nearing its close. His lungs were so scarred and fibrotic that there was nothing we as health-care providers do, except to place him on long-term ventilation, something which he had frequently and definitvely said he did not want. One day he made his decision: he was going to die, Jerry wasn’t my patient, but I had interacted with him, albeit briefly, but understood from those interactions that this was a man who knew what he wanted to do and to continue living like this was not one of those.
I arrived at work the other night and the day charge nurse said to me, “We’re going to help Jerry die tonight.”
“What do you mean?” I asked.
“He made the decision that he’s going to take off his oxygen and let nature take its course.” she said. “But we’re going to make him comfortable and treat his symptoms.” she finished.
“So everybody is on-board with this? They’re not going to ry to change their minds half-way though?” I asked.
“No. The family is here, they’re in the process of saying good-bye. Even his doc, who came out of the room crying today after he made his decision, is behind him. I think everyone knows what he wants and are accepting that. To help with that though I did staff you up a nurse.” she said trying to put a spin on it.
I was still processing the idea. I know that we’ve had comfort care patients who we let slip away, but never had someone who was completely lucid and in control of their faculties tell us to let them die and for us to actively help him make the journey. In a strange way I was almost proud, can’t really find a word that describes how I felt, of Jerry for actively deciding how he was going to end his battle. Instead lingering in an ICU, hooked up to a ventilator with nearly no quaility of life, he decided to take matters into his own hands and say, “This is how, this is when it is going to happen. Finally, I’m in control.”
The nurse who had taken care of Jarry for the previous couple of nights was back again. I hoped that she would be willing to take this on, but I knew she wouldn’t refuse, even if she was ucomfortable. I saw her as she left the locker room and pulled her aside.
“I have to talk to you about tonight. Jerry is planning on dying tonight. I thought since you have a relationship with him, having taken care of him for the last couple of nights, you should get the assignment. He’ll be your only patient and I’ll be your back-up and runner. But, you have every right to refuse this. I can’t force you to take this on.” I siad as I laid out the situation.
“No, I can do it.” she replied. “We don’t have that great relationship, it’s not like we’re friends, but you’re right, he knows me, is comfortable with me and I think that would be most appropriate. Besides who else would step in?”
“Me.” I said.
“No, I’ll do it, what is going to happen?” she asked.
“Basically he’s going to let you know when to take his oxygen off and let things go from there. You have medication orders for anxiety and dyspnea, so you can keep him comfortable and peaceful.” I said.
We went off to start the shift and get things going. She came up to me a little later and said, “I just talked to the doc who is covering tonight and he explained everything to me. He even asked me if I wanted him to stay…it was a little surreal. He did give me his pager and said if I wanted help, or needed support, he’d be willing to even come in to help. Right now family is in saying their good-byes. I’ll let you know when we decide to start.”
A little later she started. She spent hours at his bedside, sitting with family and him reminiscing, learning about Jerry as he slowly started to slip away. She would turn down his oxygen, give him some meds and wait for awhile and do it again. About 1am she came out to both reload and take a break. She said, “He’s hanging on. He’s kind of Cheyne-Stoke-ing, real shallow, so when his family slipped out awhile ago I checked some vitals, he was 50/30, sats of 35%. The doc had said it would be fairly quick, but I guess he’s hanging on for something. I feel like there’s something else I should be doing. I mean, I’ve never done this before. Is there something I’m missing?”
“I don’t think so.” I said. “Maybe he’s not quite ready to let go. Maybe give him anothe dose and let him sit with his family alone for awhile.”
And that’s what she ended up doing. He had started to gasp a little so she gave him a dose and then left the room. Sure enough about ten minutes later she went in to check and the family told her he was gone. Normally we call the houe docs right away to pronounce, but with family at the bedside I decided to give them some time. In the end we called the doc, who was a bit perplexed about why we called him, even more so why Jerry had decided to do this, but came and did his part in the end. As part of protocol I called the attending who had told us o call if we needed anything to inform him and he asked how it went and if he was comfortable to the end. He cared enough about Jerry to give him the dignified death he deserved and make sure it wasn’t a traumatic death and he did a good job.
Helping Jerry make the transition was strange. So often we’re going for the opposite, even when people are at the end we try to prolong life as much as we can. But Jerry didn’t want that. He didn’t want to live out the rest of his days on a vent, with lines and tubes coming out of him. He chose how he wanted to go. And that’s so rare.
Lost on the Floor 