Table 4 Themes (Bold) and their subcategories (Italics) reflecting the perspectives of hospice volunteers on their own role and duties in palliative care work, with illustrative quotes

Theme A. Performing small acts of kindness

    A.I. Do something good for someone

“So our task, I’ll put it very casually now, is to entertain people, to be there. To have time to do what is good for them at the moment. If you have a special request, I don’t know, would like an iced coffee, to organize that or something like that.” (P2, 29, female)

„And if people want to do anything, then we offer that as hospice companions. Or fetching a newspaper or going shopping once, the opportunity to go together to Stefansplatz and there see what shopping with accompaniment at Tengelmann or Rossmann, for example, does. Or I was also with a lady who lives nearby, I went to her house, she wanted to see her apartment once more, so we drove home. We just provide these services, and we do that, namely when we are present in the morning.“ (P16, 15, female)

    A.II. Small services

“There’s no [structured] process, what’s part of it here is loading the dishwasher, unloading it, sometimes it’s switching on the washing machine, putting things into the dryer, but all this happens rather casually, or it’s making a cup of coffee for a visitor.” (P10, 14, female)

„Well, you know, after all I fulfill tasks which don’t require any training. That’s not meant to say that all I do is making coffee but that I do things like preparing breakfast for the people.“ (P3, 7, male)

    A.III. Setting limits

„That’s an extremely demanding behavior. It’s my turn now. Of all, the man I used to go to the Lotto all the time, for example, it was him who felt offended if I didn’t devote my full attention to him. […] And then, he started driving around in his electric wheelchair, and he drove against this, and he drove against that, he was ringing the bell ten times and so. Like a spoiled little child. And then you may, and I checked back on this: then I may say: Now it’s enough. You’ve had your meal, you’ve been to the loo, you’ve had your drink. And now it’s enough.“ (P11, 56, female)

„They just can‘t really cope with it. And there I do sometimes get, well, I‘m not very easily upset, but that‘s when I really reach my limits. When someone is so ungrateful and then still makes such demands and everything is bad. And then you really reach your limits.“ (P3, 37, male)

Theme B. Creating a family-like atmosphere

    B.I. Showing spontaneous under-standing

“For me, this is the gravest of all situations. Just being there then, watching, not doing anything. You’ve got to learn this. Many of our colleagues believe that now they must do something, but often this is impossible. And even for me this is a very grave situation. […] Or also if, and this is often the case with brain tumors, if this person isn’t all there any longer when talking. You know, if he is just talking nonsense or, however, still wants a conversation. How are you supposed to handle this?“ (P1, 19, female)

„And then we go into the rooms and look… And there I really sensed that there is such a thing as communication without words. And you immediately notice whether someone likes being touched or not. So even if you can no longer really communicate, there are clear signals about what is good for the person and what is not. And well: Of course, I spend a bit longer in rooms with people that I haven‘t seen the week before, and try to establish contact there. Also to explain a bit about our role, because I always say what we can do and that they have to help us with it because we can‘t see inside, but especially that they are the main characters and they decide what / […] So, yes: what do I do there? I am there.“ (P2, 11, female)

    B.II. Spending time with the dying

„Well, and I spent very much time with Mr. T. […]. Mostly I brought him supper and spent time with him. And he hardly ate, because he was talking, which I liked very much, however […] he impressed me very much. And also, the story all around, you know, which I’m not the person to judge on, fortunately, but this amiable old-aged person impressed me very much.“ (P7, 16, male)

“Yes, it is like that, when I go into the room, I first look at the family pictures and take a good look at the room, how it is furnished, and so on. And also partly, are there lots of flowers? Then, then you can also ask if they perhaps once had a garden, right? And there are various clues…even in the room furnishings, I find things that one can address, right? Or there are also some here, like we had a post office worker, who had done many trips and then of course he talks a lot… you can get him to talk about his travels and even brought a laptop. And then about the travels…he reported wonderfully.” (P4, 18, male)

Theme C. Expecting emotional experiences

    C.I. Witnessing the dying process

“It’s very rare that we’re around right at the moment of death. Often dying takes a very long time, hours. […] But being around right at the moment of death, that’s also a piece of good luck, and I was lucky one time. Together with a very experienced nurse I helped with nursing, an old, aged lady. […] She died in my arms. Of course, that was a really, really great experience […] I never had it again. A very emotional experience. Experiencing death this way, so close …” (P1, 15, female)

“You can simply see it in people when you see them after they have passed and you look at a person. Then you can quite well discern whether / There are some who seem as if they had seen something very beautiful. Or as if they would see something very beautiful or something / utterly relieved. And there are those who still look quite grim and stressed. And that’s why I often ask myself: What could death be like? What is it, what do they see?” (P11, 20, female)

    C.II. Lending help

“I still remember: It was when I was with Veronika, a man passed away here, it was a summer, a few years ago, in the old hospice, he also had breast cancer. Men can also get that. And it was quite widescale. The chest area and the arm, all the way down. And he passed away in the middle of the / I had done night shifts with Veronika two or three times. And he died in the night and Veronika said: You must help me now. And then I helped her. And it was / And she always said: Are you okay? Are you okay? I said: Yes, it’s okay. And then he was dressed, everything was bandaged again and then something long-sleeved was put over it. And then she said: You have helped me a lot now.” (P11, 48, female)

„But, well, if it happens, if it’s so terminal, being allowed to sit there then, holding the hand, perhaps lending help in some way. Once a patient even died in my arms, that’s, that’s successful palliative care. But it’s also a gift. That’s, there’s no formula.“ (P7, 75, male)

    C.III. Making sense of existential / spiritual experiences

„Well, this just by the way, you know what I see is, and I’ve already said so, that sometimes the dying, and particularly this one I’m talking about, are really teachers for all of us. And that’s very special. And they are aware of it. Then I really address this, and I say: Have you understood what’s going on, after all? He’s our teacher. Although we’re the nursing staff or we serve them, but we’ve been made a great gift. That was a very particular soul.“ (P9, 34, female)

“I asked her, what is it like when you think about dying? I could ask it casually. She looked at me and said, ‘I look forward to it.’ I was a bit taken aback. ‘Yes,’ she said, ‘I look forward to it. Maybe I will see my…’ she hadn’t any grandchildren, ‘my cousin or relatives again.’ And that was something that fascinated me. I always pass on this sentence, whenever the conversation comes up again, also with those who are dying. What is it like that? A resident once told me she was looking forward to it and she really died that way. I saw her when she was dying. And then she told me and I found it very great. ‘My doctor was here,’ and he probably knew that he had messed up, as you would say. ‘I forgave him.’ I found that to be a great sentence as well. So these two sentences, they will stick with me and I will always remember them from this woman.” (P1, 11, female)