Tammy (a pseudonym) was an African American and very young. Very young to be on hospice that is. This new patient immediately took notice when I entered her room. I peeked in to see if she’d like to partake in some conversation. She was in bed and I drew up a chair. About the first thing she brought up was her quest for honesty. “You know, people they keep asking me how I deal with having cancer like I can beat it and all. There is no cure, I tell ‘em, and I –am– dying. You hear that? The doctors they lie and tell me about cures but I know that isn’t so. I just go with the flow of each day and I accept it.” She then addressed how repugnant pity has been for her and introduced it with the same opener: “My friends say, oh, you have cancer, how can you deal with it. I tell them I don’t want their pity. “
After I affirmed her feelings and opinions, and reaffirmed them a few times more for good measure, the visit was getting to be much longer than average for a hospice patient. I had been there close to an hour and she still had the energy to talk, despite nausea.
When I am not sure how long to stay, it is tricky to negotiate the length of a visit. Are they getting tired from the effort of interacting? Do they want some privacy? Are they just being polite by not letting me know it is time for me to go? There are plenty of polite ways for them to signal this. A patient often says something like “Thanks for coming” and I get the idea alright. Or they start to close their eyes, or tell me they need to rest. But if I bring up leaving before they do, I run the risk that they will think I myself am the one who is getting tired or upset by what they are telling me, or that what I am doing is “just a job” and am only concerned with having to get my quota of patients done for the day. So it is a tricky balancing act between leaving prematurely with the patient thinking I am rushed or not interested, versus overstaying and imposing on that patient. This is the chaplain’s version of skirting the “damned if you do damned if you don’t” scenario. Nurses and social workers do not wrestle with this problem as much because they have an agenda of things that must be done or asked and it is less ambiguous when they are finished.
As I was saying, the visit was turning into a long one, so I asked Tammy whether she would like me to stay some more, and this is where communication went awry. She said, “That’s your decision, not mine.”
“Um mine?” (I thought about how I like to give the patient, who has so little control, at least some choice regarding when and whether I should visit and for how long.)
Tammy propped herself up in the bed to talk more emphatically: “You, not me, decide to stay with me. You’re the one to decide if you are going to visit me again.” Many possibilities flooded my mind. Was she challenging how sincere I was about wanting to stay and wanting to visit in general? She did, earlier in the visit, pointedly ask me why I do this kind of work. Was she questioning my motivations for visiting and the role I was playing of being the helper vs. the one being helped? Did she feel besides my being in the “superior” role as the helper that I was treating her as even more unequal because she is an African American ? (That is, there is automatically a power differential between me and my patients because they are sick and I as a professional am healthy, which I write about in Encountering The Edge.) Did she feel I was the one to decide if she were “worthy” of my attention? Did she really want me to take control? After a few rounds of my assuring her she was the one who could decide and her telling me no I was the one, I then tried out, “I think you and I should decide together.” That did not satisfy in the end either, and she went back to telling me to choose what to do. Finally I dropped it after assuring her I would see her again, because I could not figure out what was going on and I did not want to distress her. Because she was religious, I switched gears and told her I could sing hymns. She perked up at that idea, and I sang “He’s Got the Whole Wide World in His Hands.” After I and then both of us sang together, she said, “Now I’m getting into the spirit of this.” Thus the visit began and finished on track, but the middle was dicey. Assuming Tammy was clear-headed, what do you, O Reader, think was going on?