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Table 2 Theme 2: Not just for families

From: A good resource for parents, but will clinicians use it?: Evaluation of a resource for paediatric end-of-life decision making

Sub-theme 1: A guide for staff

I have conversations with our nursing staff about what to say to families and stuff like that whereas this resource would be good. I actually think it’s not just about, this resource isn’t just good for families, actually, it’s really good for nursing staff as well or maybe even all health professionals (PICU nurse)

From a nursing perspective, I think it’s really good because it helps you, like when you read it, it’s like well this is how clear you can be about the information. … It gives you sort of like a guide, like you know this is what the family’s been given, so you can use that as a guide and knowing what other families found useful as well. (PICU nurse)

We don’t actually have anything we can get our hands on and say, here’s something to read and think about it. (Organ and tissue donation nurse coordinator)

It’s an experience you learn on the ground and some people haven’t learnt it well. Not necessarily those in the intensive care. In intensive care, by exposure, you’d have to have come across it but generally a lot of doctors don’t do it that well. (Cardiologist)

I’ve not, it’s not something that we’re ever taught as such. I mean the times I’ve learnt it has been as a registrar and as a fellow watching my mentors do it. (Cardiologist)

Good resource for nurses. (Notes from interview with PICU nurse)

I think it might [be good for] for people that are new to the ICU setting so haven’t, you know, are interested in bereavements and death and dying and that it gives them information that they might not want to ask to colleagues. (PICU nurse)

The thing I like about it though is it does focus attention on the issue and it gives clinicians and bedside staff a shared language, as you say, because we all do have slightly different ways of articulating things and, whilst we all strive for clarity, I’m not sure that that’s always achieved and I think if the resource was to become part of routine clinical practice, it would do a lot to standardise the way that we approach this. (Neonatologist)

Sub-theme 2: Processes of Communicating - When to give the resource?

I think what I’ll do each time is I’ll re-read the book… And then talk to the family and perhaps giving them the whole book but it would be very dependent on the individual and the circumstance. (Paediatrician)

It’s very difficult because you don’t want to introduce it too early but if someone’s in that distressed a state, I don’t know how much they register with because this is very logical you know. (Educational play therapist)

So I think in cases like that where it’s less than 24 hours from admission to declaration of death I think that’s probably a bit too soon, it’s a bit too much trauma happening for them to read it. I think where they’re going to be here for a few days and you’ve got the time to sort of introduce something they can think about it and feel better. (PICU nurse)

Yep, I think you could give it to them as part of the conversation (about EoL) or maybe if that conversation was happening about, you know, this is what we think might happen, so giving it to them so that when you got to that point where you were actually having a conversation about life limiting or conditions and stuff, they already had that resource. (PICU nurse)

I think it’d be great in those cases where children who are slowly deteriorating and it looks like we’re heading towards the point where potentially an end of life discussion is going to be held or some parents come in and, for example, like a head injury. We might call them for 3 days, we warn them and scan and the parents kind of know from the beginning that the outcome’s probably not going to be very good but we’re not going to decide for a few days and I think with them, something like this again would be great. (PICU nurse)

In ICU, I wouldn’t start a conversation about death and dying and saying, and here’s a pamphlet. So I think that it’s a bit beyond that stage. (Paediatric intensivist)

I think the best time for people to read this book is not at the time they walk into ICU or at one of our family meetings. Ideally it’s a year beforehand. (Cardiologist)

My first thought was this would be a useful resource if it was clear that a child had a condition which would lead to death eventually, where you might want the family to start to or you might have a discussion with the family about the possibility that the child’s going to die and they could read it and then come back to it closer to the time when or if that happened. (Paediatrician)

Sub-theme 3: Processes of Communicating - Who should be involved?

I thought I read somewhere that it was just the doctor that would give it. … I would think it would be appropriate for the care manager or someone from the healthcare team. (Chaplain)

I think overall you get the sense that and I don’t know the context in which you’re giving it to people but it’s very much about helping families to feel OK with stopping treatment. That’s the sort of vibe I got with it that this is what you’d say if you and if the health professionals were feeling like that with the time this is when you’d give to them, not when it was still a question mark about whether or not, do you know what I mean? (Educational play therapist)

I’d definitely feel there’d be situations where the nurse would be appropriate to give it or to talk to the doctors about the doctors giving it. You know, some families respond best to the bedside nurse because the bedside nurse is there for 8 to 12 hours at the time whereas some of them only really trust their medical team and if that’s the case, then the medical team would be the most appropriate because some of them find the social worker the most consistent to being throughout their admission so the social worker would be the most appropriate. (PICU nurse)

Probably the social worker is the best way to get it in here, and I think some consultants would probably be much more open and receptive to it than others. (PICU nurse)

I think possibly one of the best people in a lot of our situations would probably be our social workers because the social workers really often end up really talking in laymen’s terms with the nurses and the families so they’ll find out from us where the families are at and how the patient’s going but then they sit with them on a different level. It’s often, I don’t know how to describe it, it seems like it’s a less medically driven discussion and I think a lot of this terminology is trying to break that barrier between medical and laymen’s terms whereas but I think the social workers would be able to clue in when that would be most appropriate. (PICU nurse)

I wonder who the best person to actually give them the booklet is. It won’t always be one of the consultant doctors. I suspect the role of our, particularly in the ICU, the care co-ordinators. I suspect they would, for many families, be the best people to be handing out this booklet I reckon. (Interviewer: And is that because you think that the families sort of see the role of the doctors slightly differently or the intensivist and the cardiologist?) Maybe. I think the care co-ordinator spends more time with the family. They definitely spend more time with the family so they’d be about, often they would find an appropriate time to sort of hand out the booklet and I know they often try and gauge where the family’s at prior to meetings to help us guide the content of meeting and to have a feel for the inside story. (Cardiologist)

So having something is better than nothing and we’re relying at the moment on the personality of the person having the conversation. (Paediatric intensivist)

Sub-theme 4: Processes of Communicating - How to give the resource?

They [patients] would have to make the approach to the subject with me and it’d have to be at that phase of having those conversations to be able to give it to them but I would feel comfortable giving it. (PICU nurse)

Within most wards, is an area where parents can access written information for various things, and if it were to be sat on a rack with various things and if it were to be a rack in a family or parent room, it’s very clearly titled “Caring decisions – a handbook for parents facing end of life decisions for their child”, if anyone didn’t want the shock, then they wouldn’t pick it up. But for people that were interested, even though they might not be in that situation immediately, it would still allow them the benefit of having the information ahead of perhaps having the meeting where the information. … I also think perhaps the availability of the resource could be something the parents could self-regulate. (Neonatologist)

Look, I agree that it’s hard to introduce until you have that discussion and I think if there’s a way to have it available to parents so they know it’s there if they need it. I don’t know how you’d, I don’t know if there’s maybe like an orientation to the hospital leaflet that parents are given that you could say on it, you know, if you think if you’re getting towards a point, there’s this resource available to you. (PICU nurse)

Yes. I can see myself, I would give it to the families I thought it would help the most and give it to them and say, you don’t even have to open this book if you don’t want to but put it in your bag and keep it, you just never know. You might want to open it and I would also, so many of our families are computer savvy, I’d say, if you don’t want to open the book, at least go to the website because there’s lots of things there and then I’ve given them the opportunity and it’s up to them. (PICU nurse)