Table 5 Quotes on collaboration, competences, and quality and timing of palliative care

Collaboration and networks

Reciprocity

Q1

R: Well, she [palliative care consultant] was real good at tying in with the medical aspects, I’d say. So yes, she has a different view of the residents than we do as social service professionals. Yeah, we mainly focus on the supervisory aspect but we don’t know so much about the medical, physical aspect. She helps us think about that and asks us critical questions. She also does that with the psychiatrist and the family doctor. And she looks at what alternative solutions there are and how we can get an even better picture of a resident in terms of their physical condition. (Region 2, social service professional)

Q2

But for me it’s the other way about, because of course I wasn’t familiar with the whole homeless world. I knew something through the addiction services because of the multidisciplinary meetings [MDMs, which the participant took part in before the intervention]. But I take things from that and I think that we... […] Well, that we got to know more and... well, that we learned from one another. [...] So not just more breadth, but also getting the nursing perspective more involved [...] (Region 1, palliative care consultant)

Creating and strengthening collaborations

Q3

I: Right, and what did you notice about the care providers’ experience with that? [familiar face and being able to consult someone] R: Yeah, they like that. Well, she’s much more accessible, you can easily just phone her, she’s in the MDM so you can raise things there. Right, of course that’s really nice. Palliative care is always a bit of an issue... I: Is it? R: Yes, because someone’s dying and that’s always a bit... well, some people have trouble with that. With morphine too, you know, giving morphine. Imagine we gave him morphine and then he died, did I... is that the reason he died? That’s another issue. So it’s always nice if you have someone you can fall back on then. (Region 1, Manager 4)

Q4

I think that we can find one another, and there comes a point that we’re in one another’s networks. And if we had a patient here with really complex behavior, then even if they came from another homeless center and not from [the homeless center with nursing facilities], for example, then you can still just call [the homeless center with nursing facilities] and ask them what we ought to do, or what route we need to take to get help with this. (Region 1, palliative care consultant)

Competences of professionals involved

Feeling equipped and competent in palliative care provision

Q5

R: For example by agreeing conduct-related things with your co-workers in training sessions or peer review sessions, and by clearly demarcating the clinical picture. Right: why do you still want to send that man to hospital and what are you hoping to achieve? You’re fighting a losing battle. And you see that you can help the team make decisions about such things. (Region 2, Manager 2)

Q6

[Palliative care consultant] sees and hears all the things that are going on, naturally enough, because she works here [in the hospice] and at [social service facility] so she sees what people are up to and what issues they face. Sure, [palliative care consultant] focuses her advice on palliative care, but she also learns a lot about the problems, the needs and especially the behavioral issues of homeless people. That experience is something she takes with her, consciously or subconsciously, in her work here [the hospice]. (Region 1, Manager 3)

Support in complex and emotional situations

Q7

R: I know she was involved at [location 2] with someone who was really in the terminal stage... and also behaviorally... I’m not going to the nursing home. And she was really good there at helping think up solutions, whereas the family doctor said, ‘Just go to a nursing home.’ And we thought, that’s not always how it works. It’s different behavior, another culture, not wanting to leave your safe environment, not having any family. She gave real support — what can you do as a team? [...] She could act as an intermediary more, say this is what the team can do, these are their areas of expertise, but that only goes so far and after that, we need to bring in other people. She brings those different worlds together. You really need that with a specific group, especially here with aging people and addiction and Lord alone knows what diseases. Yes, the whole package is broader, more complex perhaps. She’s better at that. I don’t have a nursing background at all. But the ultimate responsibility for the processes is mine, so I thought, ‘Oh great, someone who’s helping find solutions, that can only be positive.’ (Region 3, social service professionals in MDM)

Q8

R: A nice added advantage is that you’re then obviously helping increase the knowledge of the person who requested the consultation. One aspect of the consultation is often that you say, wow; that you show to a certain extent how it’s tough and difficult for the person requesting the consultation too. So that’s directly for the client and indirectly for the consultation requester. [...] But the training focuses mainly on the care providers... and they’ve been left out of the picture for a very long time. (Region 2, palliative care consultant)

Quality and timing of palliative care

Focus on quality of life and dying

Q9

R: She is also doing a bit better now thanks to this [dietary advice]. You can have a bit more of a conversation with her, and she’s slightly more cheerful and less at risk of falls. So at first it’s like, yeah, she’s getting so thin, we can’t communicate with her, everything’s getting worse, one function after another stops working. Not caring properly for herself. And now you see her becoming more stable purely thanks to a good diet. And that it could be a few years yet. But then you prioritize... you prioritize comfort rather than active treatment. Then you can say it’s a palliative process because if this woman doesn’t want to go any further we need to accept it, or if she starts to feel a bit better again we could raise the topic again. That’s the great thing about this; they arranged an Italian interpreter and now she has agreed to an operation, a cataract operation. Well, that’ll also improve her quality of life because she’ll be able to see things a lot better then, she will be able to watch TV, all that kind of thing. Those are things she enjoys doing. (Region 3, palliative care consultant)

Q10

R: Um, well, it [the advice in consultations and the MDMs] gives you a better understanding anyway if you know someone’s in the final stage. Including stuff about how you can keep up their quality of life. Um, also the fact that you can discuss it with the actual resident. Just like when someone has poor liver function and you can tell them: look, if you carry on like this, it will eventually be too late. And your liver is functioning really badly. R: It’s terminal... R: Yes. (Region 3, MDM)

Advance care planning and looking ahead

Q11

Well, I think the quality of the palliative care in [social service facility] is improving as a result. They’ve gotten better at preparing for the things that could happen. So the advance care planning is better, so they don’t end up facing a fait accompli, a problem where they’re saying, “Help, what do we do now?” But it becomes, well … so that they have a better idea of what they can expect and therefore be better prepared and are better able to anticipate wishes, so the clients also get better care. (Region 1, Manager 2)

Q12

R1: But then at one point she [palliative care consultant] asked a kind of question: think of your clients — if they were to die within a year, would you be surprised or not? I learned from that... going from intuition to action where medical matters are concerned... that we should run through those clients and ask ourselves, why are you actually so concerned about them? ...And she [palliative care consultant] knew that you could use this here, that study, or try that. R2: Right. So there are more options. R1: That’s my main experience. I genuinely had to learn that difference between palliative and terminal. I didn’t know about that. R2: A lot of people didn’t know about that. It really has been a lesson. (Region 3, MDM)

Awareness of death and palliative care

Q13

R: Well, then I’m also a personal mentor [of clients in social services], and she [palliative care consultant] asked for medical data, and what’s the situation with the phase of life, what stage are we in? And if it’s a real bad stage, well then you know that at some point you can start a palliative route, that it’s possible that person could die soon. That was a really new perspective for us because we didn’t know much at all about that aspect. Right, we don’t know when... you don’t know that anyway, but the fact that you also look at the physical aspect, at how far the resident has gone there, that was genuinely new, let’s say. I: Right, so a world kind of opens up showing what you can learn about this and what can be going on physically? R: What can be going on physically and how far that may have progressed. (Region 3, MDM)

Q14

R: Right, but people [social service professionals] do need to be open to this and that’s not always the case. I: Right, so you can also run into quite a lot of...? R: Resistance. Yes, simply resistance in the sense of that’s not part of our job, we don’t do that. But when that occurs, you just let it happen. So yes, it’s a bit of give and take. [...] And you know what, homeless people, or the people in our target group, usually don’t have any family with them anymore. So if something happens and someone dies suddenly or didn’t get as much care as they needed, well, there’s no one to sound the alarm, let’s say. That’s not something the residential care facility does deliberately, but it’s that knowledge that’s lacking again. Sometimes I think there’s not quite enough attention for the real terminal care for such clients. (Region 3, Manager 1)

Q15

[Palliative care consultant] notes that there is a lot of uncertainty and a need for palliative care advice or simply to see whether someone is deteriorating. Her team meetings and recommendations are mainly about comfort and quality of life. She sees a lot of unconscious incompetence among care providers at the residential locations. Now sheltered housing supervisors are asking her for advice if they are worried about a resident or if they think someone will die if things continue like this. (Region 3, implementation log book)