Bearing Witness
As I arrived for the vigil, the end-of-life doula whose shift preceded mine advised me that the patient had been having periods of apnea, pauses in his breathing followed by a sharp intake of breath and a resumption of regular breathing. This was my second end-of-life doula vigil with the Hospice program for which I volunteered. The first one had been unusually long, happening over eight days. Tonight, at 10:00 pm, the vigil was just five hours old and I was the second doula into the home. The elderly, dying man was childless and had lived alone late in his life, but he had relatives nearby. A niece, Mary, had moved him into her home for this final passage; her family had gone home to sleep just before I arrived. Everyone had said good-bye, except for her brother, his godson. But I didn’t find this out till later.
Watch With Me
As I settled down in the chair beside the bed, Mary told me she was going to take a shower and get ready for bed. I was already seeing some brief episodes of apnea, which I mentioned to her. The previous doula had not had a chance to say anything. I explained what I was seeing and that it could go on for a long time or it could mean her uncle was imminent. I suggested she delay her shower for a little while and watch with me till we had a better sense of what might be going on. She moved in close, on the opposite side of the bed. The apnea continued, with pauses growing longer and breath returning after 30 seconds or so, until there was one last quiet breath. We waited and watched. After a couple of minutes, we looked at each other. “Is he gone?” Mary asked.
“I think so,” I said, “but let’s wait for a minute or two.” The first death I had witnessed, several months before, was clearer in it’s physical signs. That man’s entire face had relaxed and his eyes appeared to roll slightly in their sockets. His family and I had known instantly that he was gone. But this death was not so clear. After a couple of minutes, we both agreed he had died. The niece was certain and moved away to call her family.
I continued to watch for several more minutes until she came back into the room. Her brother was on his way over, so we would wait to call the funeral home. I moved away at that point and called our supervisor before calling the nurse. For some reason, and as a new doula, I was still doubting what I had seen. This was only my second case and now the second death I had witnessed. So, before I dialed the on-call hospice nurse to come and pronounce, first I called Henry (Henry Fersko-Weiss who had trained and oversaw the doulas) to consult. I described the events and my uncertainty. He suggested I go back in, feel for a pulse, and watch his chest area closely for any signs of breathing. I felt nothing. It had now been about eight to ten minutes, so it was pretty clear he was gone. I hung up with Henry and called the nurse who would come to pronounce. I also texted the next doula to let her know the vigil had ended and there was no need to come.
Staying
As the nurse came and went, we waited for the nephew, Ed, to arrive. When he did, he came into the bedroom for just a minute. We walked out to the living room together, and Mary called the funeral home. We sat down in the living room and talked for a few minutes. Mostly, they talked and I sat quietly. They were sad, but not emotional. The death had been peaceful. The funeral attendants were on their way. It was little more than an hour into my end-of-life vigil shift and the vigil itself had lasted just five hours. They told me they were fine and, as it was late, there was no need for me to stay. I hesitated, saying that I did not mind being with them until the funeral home came in case there was anything they needed.
A few minutes later they said again that, really, I must be tired and I should go home to bed, that there was no need to stay, and they were okay. I did not want to intrude on their private space, and I was concerned that that was how they might feel, so I said I would go.
Different Needs Arise
“But, before I go,” I said, “let me just talk you through what comes next.” I wanted them to be prepared. “When the funeral home comes, they will bring in a gurney. They will probably put your uncle in some sort of bag…” At that, they both gasped.
“This is why I’d like to stay,” I said gently. I explained that my shift was until 2:00 am, that I had napped, that I was awake and prepared to stay until that time, and that it wasn’t a hardship.
“Okay, yes, please stay,” they said. Understanding now what I could still do for them, they appreciated my presence. I told them that I would oversee the funeral attendants when they came, staying with the their uncle and walking him outside to the van for transport, explaining that they did not need to witness that, that they had done all they needed to do and had done right by their uncle.
We remained in the living room talking until the funeral workers arrived. They came in efficiently with a gurney, and we directed them to the bedroom. At this point, the niece walked away. The nephew, on the other hand, to my surprise, followed them into the room; I waited by the bedroom door.
As the attendants lifted the gentlemen onto the gurney and closed the bag, we moved out of the way. The nephew followed them still, opening the door, stepping outside. I was curious at his comfort with the process. Since he was with them, I walked out back to the patio where Mary was waiting for them to be done. She told that she had heard the zipper; she shuddered a little as she said it.
Bearing Witness
A few minutes later, her brother met us outside. As we stood there in the dark, in the chill of an autumn night under the stars, I asked him how it was for him to witness the transfer. He explained that he had lost a friend when he was a young man and that he had never let himself deal with the loss or feel his grief. He had pushed it aside it and moved on with his life. This time, he said, he didn’t want to avoid the experience or his feelings. It felt important to him to be present for the entire process.
As I stood there, I understood what we as end-of-life doulas do beyond sitting vigil with the patient and providing respite for the family. Yes, we support the patient’s end-of-life vigil plan, we ensure that family is present, as I had earlier in the evening, but we do more. We do what is needed.
Once the person has died, death continues for the family. Each family and each person in it is different. In this case, preparing these two family members for what was coming allowed each of them to choose how much involvement they wanted at that point. I will never know, but I wonder, if this man would have stayed present to the ministrations of the funeral attendants had I not forewarned them. Being prepared with information may have given him the opportunity to choose, consciously, to bear witness. Maybe he would have anyway. But, maybe not.