When I worked a couple of days later, I went back to see the patient who was on her way to hospice. I will call her Emily. We had quite a long visit, during which I asked if she’d like to do a writing project. She liked that idea, so I asked her questions about her life, including what the most wonderful parts have been, and wrote down her answers. At the end of the visit, I said that we could continue another day, but a nurse who had just come in said, “She won’t be here. She’s leaving at 3 p.m.” This was news to both me and Emily.
I asked, “Where is she going?” or maybe Emily asked, “Where am I going?” and the nurse named the hospice where I used to volunteer, but didn’t say the word “hospice.” That is, pretending the place is called Number One Hospice, the nurse said, “She’s going to Number One.” I told Emily that I’ve spent a lot of time there, and that it’s very nice. Of course, her anxiety level shot up, because one of the main things bothering her was realizing that she was no longer in charge of her life. I told Emily that, if I could, I’d come back before 3 p.m.
I returned about 2:30 and found Emily weeping and terrified. Another care team member came in and said soothingly to her, “You’re going to go to this really nice place for a little while,” and all but winked at me. I was outraged. After this person left, Emily said, “I’m never going home again, right?” I said, “That’s right. Probably. All kinds of miraculous things happen in this world and sometimes people go to hospice and then feel much better and go home, but if you’re thinking that you will not go home again, I think that is probably correct.”
Later she asked, “Hospice means end of life, right?” I confirmed that, but in a wordy, probably kind of confusing way. I couldn’t quite bring myself to be direct because it seems like a terrible thing to learn that you will die in the foreseeable future. That is, it was likely my stuff, and indeed, by this point, I’d abandoned my usual practice of mostly listening and was somewhat urgently trying to reassure Emily: It’s a lovely place, there will be nice people there, everything will be OK. She said over and over, “This is exactly what I was afraid would happen. This was my worst fear, and now it’s happening.”
I did also acknowledge and validate her sorrow and terror, and I did say, “This will take some getting used to,” which I stole from the trailer of the new palliative care documentary End Game, which I hadn’t yet seen. (I have now; it’s good.) Those were the better things I did, I think. I also held her hand, and I was there. I asked a few times, “How are things right this moment?” and every time I asked that, there was no answer, but I got the feeling she was realizing that things were actually OK in any given moment.
She asked, “Will I see you after I leave the hospital?” and I had to say no, that the relationship must end when the patient leaves the hospital.
When the transport guys—two nice young men—came in the room with the gurney, I felt a wave of terror. At this point, I was pretty much psychologically merged with Emily and had crested the peak of empathy and toppled over to the other side, into empathic distress, as Joan Halifax describes in her new book, Standing at the Edge: Finding Freedom Where Fear and Courage Meet. She hammers home the distinction between empathy and compassion, which at first seemed like a picky sort of point, but might end up being one of the most important things I learned from her book.
I rode the elevator down to the first floor with Emily and the two transport workers, and watched her be loaded into an ambulance, and after the door closed, I wept briefly. I told one of my co-workers about it and he offered some wise words. I appreciated his kind intention, but what the offering of wise words basically conveys is, “I can’t stand feeling what has arisen in me as I hear your words and I need it go away right now.” I didn’t blame him. It’s extremely hard to say nothing when someone tells you what he or she is upset about. I couldn’t do it with Emily in our final half hour together in the hospital. It is something I hope to get much better at.