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Table 2 Relational uncertainty

From: End of life care interventions for people with dementia in care homes: addressing uncertainty within a framework for service delivery and evaluation

Relational uncertainty relates to how EoL care decisions are shaped by relationships, responsibilities and roles within the care home, with visiting health care professionals, and by relationships with external regulatory bodies.
Example of how the relationship between paramedics and care home staff can be affected by different expectations:
“… you have [emergency service] staff. they would think ‘Well, this patient needs to be in hospital for whatever reason’, and really you might get a conflict, but it depends on the way that the communication is going between the two. It’s quite often key to the decisions that are made as well, and sometimes it starts to get inflamed then it’s easy for us is just to take the patient out and take them to hospital rather than get in to any sort of rows, …. so it can be strained at times,.. it doesn’t happen very often but it does happen occasionally and that’s when it can become very difficult” [Evidem EoL].
GP providing an example of when good working relationships mean that she can be confident about a patient, but that this changes if she meets with different staff at every visit:
“I find that staff are very experienced, they know their patients (…). So I rely on them a lot to tell me about the changes in behaviour and how they perceive the patient. (…). But if you had a different carer every day, you can’t really make that picture [of the resident’s function]” [Evidem Eol].
Care home manager highlighting how family and residents’ wishes shape decision making, and her view that the power to decide is theirs:
“[I] do feel that it’s a bit of a fiasco when people decide ‘no, no, I want to still have an intervention’ and it’s chaos towards the end. .... It would be very nice to have a very clear treatment and to have everything crystal clear, but I don’t think that is ever going to happen […] I mean, we can voice an opinion, but we don’t have the right to make those choices (…) we’re proving very much all the time that we’re giving the power to the residents, and that always involves the relatives as well” [EPOCH].
Care home staff member that has completed training in EoL care:
“In the type of job we do people’s lives are affected, it’s not just the person you are caring for. It’s all of their families….so we have lots of sensitive things to deal with….” [TTT study].