Table 4 Exemplary quotes

  Personal attention

Q1

“Do you have a special relation with one of the healthcare professionals? Yes, the departments’ ‘mother’ […] she’s really empathic. When she starts her shift, first she visits me and wants to know how I’m doing. [..] just giving somebody a bit more attention than everybody else. What does that mean to you? That supports me.” - G-01

  Cooperation

Q2

“The thing I’m worried about is: how will it enrol from the moment I’ll receive palliative care? [..] How would people be called in if it would happen at night, if suddenly I would become very ill? I’m afraid that everything I’ve arranged, would be for nothing. That would be a disaster. It’s no exception that healthcare professionals talk at cross purposes.” - G-04

  Involvement

Q3

“At home, he distorted the truth or exaggerated his disease. I still want to talk with that doctor and know ‘how ill is he?’. I’m being left out by everyone. Would you say the medical staff goes along with him too much? Indeed.” - H-03

  Being treated as a human being

Q4

“Well. It’s all zero. I mean. I’m here to die. And they [HCPs] highlight that, which isn’t nice, but well... You can see: even my bed is not made. Those are small things, but they sting.” - G-02

  Patient centeredness

Q5a

“He [nursing home physician] doesn’t visit me often [..]. He goes his own way. If I want different medication, he is like ‘no’. [..] I can barely reach a compromise. To get something done, you have to manipulate a bit.” - G-05

Q5b

“What do you find important in the care you receive? Well, I find it important that they listen to me. And would actually do something useful with that, afterwards. [..] Listen, yesterday my catheter would be cleaned and cared for. Didn’t happen.” - G-03

  Openness

Q6

“I’ve had good experiences here. It is adequate, meaning: straight-to-the-point [..] If you promise something, keep to it.” - G-09

  Expertise

Q7

“Listen, methadone is a strong painkiller. The problem is, in the hospital they said ‘can we give that man [patient] morphine? Will it work, because, already, his dose is so high’. I’m like: how would they know, did they try themselves?” - G-04

  Being left alone

Q8

“They let me do my own thing, leave me alone, they just let me live. Like it’s supposed to. Let me do my own thing? Yes, just living like I want to. I stick to the rules as they are, but you gotta be able to live the way you want, right?” - G-04

  (seeking) closure

Q9

“How do you look back upon life? That’s starting now. Actually I don’t want to talk about it, because I haven’t decided upon the whole picture. I’ve been through a lot and I’ve to find out about it and why things happened.” - G-04

Q9b

“I’m feeling connected [with dad] to a certain extent, but I’m not taking it home anymore and I’m not sad about it for days, like I used to. What were you sad about? How things went like they did. [..] To find peace with the choices he made.” - H-02

  Without suffering

Q10

“The way I’m being sickly now, I find bad enough. If it would get worse... rather not. Are you afraid of something? To suffer from pain and to go downhill. Actually, to become even more dependent on others.” - G-03

  Acceleration & alleviation

Q11

“How would you imagine that [euthanasia]? Just euthanasia, injecting and you are gone.” - G-08

  Place of preference

Q12

“Did you ever think about where you prefer to die? I enjoy it here. Do you prefer this place? Yes, and I’ve made it known.” - G-06

 Physical well-being

Q13

“And she [the physician] said ‘you could maybe prolong life with a year, but that is it’. [..] Actually, that has passed. Probably by rest and pain medication. And the attention. Being in bed, getting food and more frequent [family] visits. For six months now, each visit, we say our goodbyes. Each time you are thinking ‘this could be the last time’. [..] And that’s hard. [..] The not-knowing. Knowing it’s going to be over, but at the same time, not knowing when.” - H-01 and H-02

 Psychological well-being

Q14

“Are you surrounded by other people besides your son? No. And how does that make you feel? Empty. And does that occupy your mind much? No. [..] How does that effect you? You become quiet [..] I withdraw [..] I barely eat or don’t eat at all.” - G-08

 Social well-being

Q15

“She [daughter] wants to visit me. Her husband comes with her and I can understand that. He can support her. What do you mean by supporting her? Well, that kid didn’t see me for 25 years. [..] She was two when I disappeared off the radar. She has zero memories of me […]. And how does it make you feel to see them [children] after such a long time? A happening. It’s beautiful.” - G-02

 Existential well-being

Q16

“And how do you look back upon life? […] When I reflect upon it, do a sum of the good and bad things and take the mean score, I would say ‘pointless’. Useless. If I would’ve had a wife and kids, it would’ve been different. […] I don’t think I made the world a better place […]. Wouldn’t I have been here, nobody would’ve noticed.” - G-03

  Sources of strength

Q17

“I don’t have the age to die yet. No. I’m still fighting and living from one date to the next. Recently, I’m married for 25 years. Congrats. Thanks. The day before yesterday, I’m together with my wife for 29 years. That’s how I live on. From date to date.” - G-01

  Seeking social support

Q18

“And how do find strength? In myself and other human beings. Not in religion or something like that. [..] Could you tell me more? Well, we [co-residents] communicate with each other. Since we are burdened with one another, we become a kind of unity. It‘s easier to struggle with your problems. [..] What do you mean by unity? We are in the same ship together. That’s a unity. A kind of Titanic. With your co-residents or also with the staff? They too, indeed.” - G-06

  Avoidance/distraction

Q19

“I’ve still got those suicidal thoughts sometimes. […] and what does alcohol provide you with? Alcohol gives me peace […]. It tempers, right? Those negative feelings? Yes.” - G-09

  Fighting

Q20

“On the one hand I would embrace death, but body and mind think differently. I wanna get rid of the pain, but at the same time I’m fighting to live, while death is lurking.” - G-02

  Blaming

Q21

“And a few minutes ago I asked whether your physical state is related to the alcohol and you said ‘yes, of course’. Yes. What do you think of that? It sucks. It is what it is, though.” - G-09

  Absorption

Q22

“And shortness of breath, what does that mean to you? I find it terrible. It’s part of the COPD, though. It sometimes reminds me of the terrible disease I’ve. But well … I’ve to learn how to live with it. It’s confronting? If I understand it right. Yes. How do you cope with that? I can’t ignore it. I’ve to wait till it’s over and keep calm.” - G-03

  Resignation or acceptance

Q23

“And how do look back on life? ‘To be or not be’, you know. It’s what it is. I’ve always lived on the other side of the coin or on the edge. [..] I’ve always walked downhill, never uphill. So you should’ve resignation. I’m resigned. [..] I’m not full of self-pity and bitterness.” - G-06

Q24

“I have to lie in bed all the time, smoke a cigarette. That’s all I’ve got. I’m looking forward to the moment the lights go out. I’m fine with that. I’ve been waiting for it for months now.” - G-05

  Disinterest

Q25

“I’ve had so many conversations, but there’s a point when there’s nothing left to say. When I look forward, there is few … [silence]. What do you mean by looking forward? You said ‘there’s not much left to say, when I look forward’? Yeah, boredom. [..] There’s no future.” - G-07

 Expression

Q26

“And with whom do you talk about your disease? With nobody. With my son. I provide him with all the information I’ve got. [..]. It’s making me sick to tell it a hundred times, to repeat it every time. How so do you find that unpleasant? It’s exhausting.” - G-05

Q27

“And is there something you want to do about it [feeling empty]? What should I do about it? Such bullshit! Well yeah, I’m just being curious. It’s nothing. It doesn’t sound pleasant to me. It isn’t indeed. But you don’t want to talk about it? No.” - G-08

 Disease awareness

Q28

“Do you have a physical disease at this moment? As far as I know, I haven’t. No? No. You are not suffering from something in your lungs, e.g. COPD? Only methadone. You are using methadone, okay, but you don’t have a physical disease? No.” - G-07