Background
End of life decisions for newborn infants and children
Impact on families
Ethical complexity in end-of-life decision-making
Support for end of life decision-making
Methods
Study aims
Study design
Study setting, sampling and participants
Data collection and analysis
Results
Theme 1: Family empowerment
Sub-theme 1: Giving words and clarity
I guess I feel like it does break it down a bit more and it gets them thinking about the types of things that may be asked of them or the types of questions that they might be asked to think about because families will often say, “You know, I’m sure I have a million questions but I don’t know what they are” so this kind of helps give words to what some things that might be on their mind and I guess it empowers them to think that they can be curious in this process and they don’t just have to take the information and they can actually ask more questions (Group interview) You know, they’re trying to understand these things that are far-fetched and unusual to them and unheard of and so giving them something they can sort of hold on to sometimes might kind of help them kind of ground themselves (Organ and tissue donation nurse coordinator) I guess it’s helping people make their own clarity about what’s actually happening here. (Chaplain) Definitely, bridges the gap a little bit and maybe gives people the chance to actually think if there’s a publication about it, it’s official? (Educational play therapist) I think it would help clarify some of the things we’re trying to talk about. (PICU nurse) … I asked her, “I’m sure you have questions, you probably don’t know what they are” and she said, “Yeah, that’s right. My head’s swimming” and I think that just seeing that page would be really helpful to streamline some of their ideas. (Group interview) |
Sub-theme 2: Conversation Starter
I like on the online version the language of like how can you start a conversation, how can you answer question and the questions that were tab options on there I thought were really useful and I can imagine myself asking those questions (as a parent) (Educational play therapist) it could be a good conversation starter a good introduction to some of the things that they were feeling, (Group interview) I think it could help open up conversations for people who may be feel a bit less confident. (Group interview) It’s a conversation starter. And then people can find their own language. (Paediatric intensivist) |
Sub-theme 4: A resource to take away
In these meetings [parents] get a lot of information, a lot of very distressing, very new and unfamiliar information and you kind of tell sometimes, they’re not really taking it all in and you never know what they’ve heard and what they haven’t heard. So I think they can sometimes really shut off about, like they just don’t want to hear the technical things. They just know the child’s going to die, they don’t need to hear how it’s going to happen sometimes but I think having something they can read, it might help them to understand the process a bit better. (Organ and tissue donation nurse coordinator) The written format enables someone to go back and review. People will always find it difficult to take everything in one go, especially if they’re very emotional. These conversations are sometimes difficult and they will forget content and this is opportunity to go back and read it again and read it again and, that’s why written information’s helpful. (Cardiologist) It doesn’t particularly say anything new or anything that we wouldn’t tell parents anyway but I think the beauty of it is that it gives them something to take away and, you know, with any of the sessions that we have with our families, the information is so complex and there’s so much of it that I don’t really expect them to take more than about 10 to 20% of it away in their minds, which is why we have these meetings repeatedly but I see enormous value in them being able to take something away and read quietly later because I think a lot of what’s written in the book would trigger memories about what was said in meetings that would allow them to feel more comfortable with the decision at a time when they’re drowning in complex information overload. (Neonatologist) It gives families something they can take away and read that aligns to what they’ve been told in that (bereavement counselling) setting. (Neonatologist) I think it would be extremely useful because when you mention to families they sort of close down and they forget the questions they might want to ask but having a resource that they can go to when they maybe deal, come to maybe deal with a little bit more terms with the information they’ve just been given, a resource that you can give them and say, when you feel up to it, have a read through this. I actually think that would be extremely beneficial. (PICU nurse) Sometimes there’s not a huge amount of time between then and when an intubation happens for them to read … so maybe when they can read it at a point when they’re a little bit kind of calmer then at least there’s some sort of information there and if they come to it, they can go, “Oh, I’ve read that book and I should maybe pick that up again”. (Organ and tissue donation nurse coordinator) |
Sub-theme 3: ‘I’m not alone in this’
I like that there’s some stories and I really like the quotes and I think that’s really helpful for people to say, yeah that’s what I’ve been thinking or that’s been my experience or just hearing something, being reminded that I’m not alone in this. Other people have walked this journey. (Chaplain) It would help those who are struggling to make a decision – seeing others have gone through it would help. (PICU nurse) I think it just made it a bit more personalised it sort of opened it up that, you know what, other families go through this as well and this is how they dealt with it. (PICU nurse) I think it’s really good. I think the inclusion of the post-it notes with the families’ feedback is really good because it makes it feel much more like it isn’t just the doctors telling you what they think. (Educational play therapist) |
Theme 2: Not just for families
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) |
Barriers to implementation
When I read it I was like, this is really great! It’s compact, small, clear. It’s not, like even the colours and stuff, like I know that’s something really little but they’re not intimidating. … I thought it was calming. (Nurse)
The only thing I didn’t like is when people use the term “vegetative”. I just, personally, I hate that term. I think it’s old school. (Int14)