I was driving to my first patient the other day. It was a beautiful Fall morning in the Hudson Valley and I was heading south from Kingston in the golden early light. My patient had taken a turn for the worst in the previous few days and I wasn’t sure whether he was going to recover or continue his downward trend. I felt that this morning’s visit was going to be pivotal. A mile south of the 199, I got a call from the son. His voice was unusually tense. We aren’t doing too well here, he said. I noted the use of the plural. Dad is sort of gasping for breath and he isn’t responding.
I had been driving on autopilot, chilling to some mellow music to get me into the hospice nurse frame of mind for a Wednesday, but in that moment my whole being shifted into a high gear. Okay, I said in my calmest voice, it sounds like your dad is leaving us. Does he look comfortable? Is he struggling? Yes, the son said, and no. I’ll be there in six minutes, I said.
I sped up. I switched the music to something loud and insistent. And I turned it up louder. For those six minutes, very loud music and some over-the-speed-limit driving helped me to prepare for what I could imagine was waiting. I had a short talk with my patient in my head. He was this straight-up, no-nonsense but very lovable guy. Tommy, I said to him (not his real name) if you are going, I’ll try my best to keep you comfortable. I promise I’ll make this the best that it can be. Then I said to him in my head: I’m really sorry, hang in there, I’m driving as fast as I can.
When I got to his apartment, his son and daughter in law were sitting with him and I could see at once that he was close to death. Unresponsive. Flaccid limbs. Breathing agonal - what I call fish-gasping, which means breath that is coming in short infrequent gasps from the abdomen, really just a convulsing of the lungs due to medulla oblongata brain activity. His oxygen saturation was in the 30s. There was little to no frontal cortex brain function.
I spent the next three hours in his room with various family members. My memories of those three hours are like a time-lapse video. People came and went. My patient sat in his chair with his brain and body shutting down. I checked his pulse periodically. I went into the kitchen. I went outside. I talked with various family members. I texted the hospice team to let them know the patient’s status. I asked my supervisors to cover my 11am visit. I want to see this through, I texted, but I knew that this could be wishful thinking on my part.
After more than three hours, I had to leave because I knew he could take many more hours to die and I had other patients to see. It can be a tough judgement call, when to leave an actively dying patient to take care of your other folks. There’s only so much help available from a hospice team already stretched thin.
I made sure the family had everything they needed and knew to call me as soon as he passed. Twenty minutes down the road, I got the call to say he had taken his last breath. I made a couple of calls to reschedule my immediate visits. I also texted a hospice text thread that reaches over 50 staff: Tommy just died, on my way to pronounce. This would prevent any other staff from calling or visiting. It also, in my mind, allowed staff who had taken care of Tommy to learn of his death, grieve him, and send their good thoughts to the family.
In the three hours I spent with him as he died, and during my visit after his death, some moments stand out in my mind. I remember lurking in his kitchen, trying to afford some privacy to one of his sons who had showed up to say goodbye. For various reasons, the most involved son had asked me to be present in the room when this son visited. While I felt that my presence was something of an intrusion, I also understood completely and honored the request. Families are complex beasts. From the kitchen, I could not help hearing some of the words this son was saying to his dying father. These are the moment that get seared into a hospice nurse’s memory, the ones we carry with us in some compartmentalized part of our brain. I will never forget what I heard.
Nor will I forget the moments early in my visit when the catastrophic change in my patient’s condition was still new and raw to his son and daughter in law, and also to me. The three of us were gathered around him and his son reminded his dad of a precious and moving promise they had made each other. Then he started singing to him. That undid me. Paper masks don’t stand up too well to tears. Between the three of us, we were using up all the tissues in the house. I fetched a toilet roll and we started using that.
Is it okay for the hospice nurse to cry along with family at a death? Absolutely. And are there times where we need to rein it in and allow the family space and freedom to grieve while a professional holds the space for them to do so? Also yes. I just knew intuitively that in this situation, they would all be fine with me grieving alongside them. So I gave myself permission to do so. Plus it would have been pretty hard, if not impossible, to rein in the tears on this scene.
When I finally left there after the death, when the family was gathered at the bedside and I had notified the mortuary of the timing for pickup, I drove south to the visits I had pushed out till later that afternoon. I had a half hour drive to gather myself, and a few minutes to spare along the way. I tried to think how I could spend the time to both nourish myself and to honor my patient.
I passed a wonderful farm stand I had recently discovered. They had Fall color pots of chrysanthemums on sale. I had bought a pot a couple of weeks before to honor another beloved patient after attending his death. It had been hard to choose from the beautiful colors, but I had restricted myself to a single pot, dark red. I pulled over. There were just a few pots left now and they looked a bit ratty. The owner gave me a deal on two plants the color of Tuscan sunshine, and explained to me carefully how to keep them alive over the Winter. I stashed them in the back seat of the car.
As I drove to my next visit, I was thinking how intense my morning had been and yet how lucky I am to do this work that I love, to meet the people I meet and see the things that I see. In the back seat, the mums glowed a glorious deep yellow. I could hear Tommy telling me how beautiful they were. If I plant them in the earth, let them die off to sticks in the snow, then cut them down to six inches when it thaws, I just might see them come back from the dead next Spring.
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