I revisited an older verbatim that I wrote back in 2011. It’s interesting to go back and review older visits and interactions with the lens of history and experience. I don’t remember this particular case, but it reminds me of several other cases. I do remember that it was rather frustrating for me, which will be evident in the interaction.
This particular case involves Mrs. L, a 93 year old white, Catholic woman who was a resident at a Catholic-affiliated facility. She had been on hospice for some time but was now not eating or drinking. She was on hospice for “failure to thrive”, had dementia and had been nonverbal and minimally responsive for months. Her daughter lived out of the area and was known for being anxious, difficult to talk to, and unrealistic. I paid a visit to the patient who was in the early stages of dying and spent about 2 hours sitting at her bedside providing prayer and comfort, music, and generally watching her condition. I had a discussion with the DON at the facility about how the patient was doing and they expressed concern in that the daughter possibly wanted to put her on IV fluids, which would probably kill her as she also has heart failure. The DON was also hesitant to give comfort medications to the patient as she was afraid of what the daughter might perceive when the patient died. The daughter, Mrs. H, lived out of the area and was currently in Florida. She was notorious for being hard to reach. I had met her only once and she was very hard to talk to.
After visiting with Mrs. L and returning to the office I decided to contact the daughter by phone. On the phone, Mrs. H sounded nervous. Her responses were quick and rushed, almost like she was on the verge of an anxiety attack.
C1: Hello this is Samuel Blair calling from ——- Hospice. I’m the chaplain on staff.
C2: I was calling in that I was out today to see your mother-
C3: She’s not doing very well. I spent some time with her this morning until our LPN Beth came. I wanted to see if there was anything else that I could do for her on my end at this time.
P3: Do you know if she has had last rites?
C4: I would guess that she has been, given where she is. But would you like me to check?
P4: Yes please – that would be good.
C5: I will find out about that and ask them to do that if she hasn’t been. Is there anything else I can do for you?
P5: No not really. I’m trying to get up there as fast as I can-I’m trying to get a flight. I just…I’m trying to figure out what to do.
C6: I know. She’s been declining for some time now…
P6: And I think that if she just got some fluids in her…I don’t know, it just seems like they should be able to do that there. That might perk her up a bit.
C7: It might, but the hard thing is that it might perk her up for a while but then once she’s off the IV she may start to decline again. And then you’re just going back and forth.
P7: I know, I know, the doctor told me all about that. My brother’s coming up and he told me things too. I know hospice sees this as a big deal, but I don’t know how you can go on without water. I mean, that’s simple. (sarcastically)
C8: I know she hasn’t had water in a while, but she hasn’t been doing well before that. She’s been very tired and hardly taking anything in.
P8: Well the last time I was there she was talking to me. That was 3 ½ weeks ago.
P9: Well, she wasn’t talking – but she was responding. And she talked to a niece on the phone when she called her.
C10: Ok – I guess I hadn’t heard that.
P10: Anyway, I’m going to straighten this out once I get up there.
C11: Is there some way I can help? Would it be helpful to talk to our nurse about your concerns?
P11: No. But if you could make arrangements for last rites that would be good.
C12: Ok. Do you want me to call and let you know when it’s done or just get it taken care of?
P12: Just take care of it.
C13: Will do. I’ll get right on it. Anything else?
P13: No, that’s it.
C14: Ok – thanks!
P14: OK, bye.
After this call I contacted the facility to make arrangements for sacraments. They did not have a priest available so I called a number of other parishes who all gave me the same story. After about 2 hours I was able to have a priest go. I discussed this case with her social worker and we didn’t see eye-to-eye. I expressed my frustration with the daughter for going back and forth and not wanting to do what the patient wanted or what appeared to be in her best interest. The social worker felt that she was simply struggling with a difficult decision, but I tried to point out that this was a pattern of behavior over time that was now making patient care and comfort difficult.
I ended up going back out to the facility about two hours after this call as I was told the patient’s son and another family member were present and they thought that some support would be beneficial. I met the priest on the way out who said that the son was tearful but that they were “tears of joy.” When I met with the son he was very sad and tearful – not joyful – but accepting of his mother’s decline. He did go back and forth, though, between encouraging her to “go home” and be with family and telling her to “be tough”. I spent about an hour with them and felt that they were OK, and provided my contact information letting them know I was on call.
Several things resonanted with me in reading this verbatim almost seven years later. First, I continue to find phone conversations frustrating. I rely a great deal on presence in order to help understand and engage with people, and I find that very difficult to do over the phone as so much relies on tone which can be misinterpreted.
Second, I realize today that I didn’t really attend to the daughter’s needs at all. I never named her own anxiety up front and tended to be evasive with her in discussion of her mother’s condition. I had spent two hours with this person’s mother who seemed to be close to being actively dying – if not there already – and the best I could say was that she was “declining”. I didn’t want the daughter to be angry or more anxious than she aready was, and I was put off by her treatment of me on the phone – “just take care of it.” I felt that I had a much better visit with the son because we were face-to-face and that I could listen and be more present with him than his sister.
What spoke to me the most though was the anxiety that was rampant through this whole visit, both hers and my own. It seemed as though I was just hoping to make it through the call alive! Today, as in 2011 and for years prior to that, I struggle with anxiety and depression. It doesn’t take much for an event or circumstance to start a downward spiral where both anxiety and depression feed off each other and I become my own worst enemy. In a way, Mrs. H became my anxiety personified, and I reacted as such. I placated it, avoided it, and even tried to appease it, but never named it or confronted it. I thought the real issue was elsewhere, where it was really right in front of me all along.
In looking back, I would have done some things differently. I would have been more up front regarding Mrs. L’s condition as well as Mrs. H’s anxiety. I realized that I was more afraid of making things worse than I was concerned with being real or making things better. This is a fear I have in many areas of my life, as I expect many of us do. “Getting by” always is easier than “getting better”, but the former rarely leads to the latter.
Getting better often requires confrontation of those things we fear, even if those things are just possibilities and not realities. But our minds can make more monsters than ever existed in the world.