Background
“to identify, appraise and synthesise ‘best practice’ methods to develop and evaluate palliative and End of Life Care, particularly focusing on complex service-delivery interventions and reconfigurations” [4]
Delivering choice programme
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Two End of Life Care facilitators who worked across the county. These facilitators had specialist palliative community nursing experience and educated care home staff and community and hospice nurses to improve end of life care skills and knowledge. They did not work directly with patients. (North Somerset only)
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Two End of Life Care Coordination Centres (one in each county) that organised packages of care. These packages of care included equipment, night staff and personal care staff. In Somerset, the coordination centre bought all support needed from external care providers (e.g. personal care staff) and was run by a nurse manager with administrators. In North Somerset, the coordination centre was located on social service premises and offered a ‘one stop shop’ where all needs could be met (i.e. financial assessment, personal care and equipment provision). This Coordination Centre included an in-house personal care team and was run by a nurse manager supported by two specialist end of life care nurses and administrators.
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An Out of Hours Advice and Response Line delivered by a local hospice and manned by specialist palliative care nurses. They responded to calls from professionals, family carers and patients. (Somerset only)
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Two End of Life Care ‘Discharge in Reach’ nurses based in two different hospitals in Medical Admissions Units and Emergency Departments. They identified patients wanting to die in the community and facilitated fast discharges. (Somerset only)
North Somerset | Somerset |
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Electronic end of life care register | Electronic end of life care register |
Key Worker | Key Worker |
End of Life Care facilitators | Discharge in Reach nursing service |
Coordination centre with integrated personal care team | Coordination centre |
Out of hours response and advice telephone line |
Evaluation of delivering choice
North Somerset | Somerset | |||
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OR | 95% CI | OR | 95% CI | |
Hospital deaths | 0.33 | 0.20, 0.50 | 0.20 | 0.17, 0.27 |
Emergency hospital admissions at 30 days | 0.49 | 0.33, 0.75 | 0.61 | 0.48, 0.76 |
Emergency hospital admissions at 7 days | 0.22 | 0.12, 0.44 | 0.32 | 0.23,, 0.45 |
A&E attendances at 30 days | 0.41 | 0.28, 0.62 | 0.66 | 0.51, 0.85 |
A&E attendances at 7 days | 0.22 | 0.11, 0.42 | 0.32 | 0.22, 0.67 |
Methods
Study design
Data collection
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43 family carers and service users
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11 staff delivering or managing Delivering Choice services
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94 staff eligible to use the services including those who did and did not refer
Profession | Telephone | Face to face | Informal | Total |
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Community nurses | 16 | 6 | 0 | 22 |
Hospital nurses | 3 | 2 | 13 | 18 |
Community palliative care nurses | 4 | 7 | 4 | 15 |
Hospice clinical and administrative | 14 | 0 | 0 | 14 |
Delivering Choice providers | 2 | 9 | 0 | 11 |
Care home | 5 | 2 | 0 | 7 |
General Practice surgery | 5 | 0 | 0 | 5 |
General Practitioners | 1 | 3 | 0 | 4 |
Ambulance | 2 | 0 | 2 | 4 |
Community hospital | 1 | 0 | 2 | 3 |
Hospital consultants | 0 | 0 | 2 | 2 |
Total | 53 | 29 | 23 | 105 |
Data analysis
1 | How is it supposed to work? |
2 | How does it actually work? |
3 | What helps to make it work? |
4 | What makes it more difficult? |
5 | What would make it work better? |
6 | What prompts someone to use it? |
7 | Does it duplicate something else that’s already there? |
8 | What are the positive impacts? |
9 | What’s its impact on the evaluation outcomes of: |
a. Co-ordinated care | |
b. Patient dying in place of choice? | |
c. Hospital usage (ie admissions, A&E) | |
10 | What are the unintended consequences? |
11 | What do patients/family carers think about it? |
12 | What else do we still want to know? |
13 | Any other comments? |
Ethics
Results
North Somerset end of life care facilitators
When I first started here 12 years ago the carers that used to work here, they were always frightened of going into a room if somebody was dying in case they were dead when they walked in. But now, they are a lot more confident in dealing with that and dealing with relatives that are crying or upset. (Care home matron)
It used to be kind of roughly 50/50 in acute hospitals and in the community and now it’s probably more like about 80-85% of our patients dying either at home or in nursing homes and so for me that’s really positive. Whether you can kind of directly make the link between what [the End of Life Care facilitators] have been doing…or whether it’s just patients just choosing that more I don’t know…but I’ve been here for about eighteen years now and I’ve definitely seen that huge shift…in the last few years towards staff feeling more confident and being better prepared and anticipating patients dying at home and the quality of dying at home or their care home. (GP GI)
North Somerset end of life care coordination centre and specialist personal care team
This patient is very close to death and has told the Generic Support Worker that she is ‘ready to die’, which the daughter knows but is anxious about. The Generic Support Workers engaged in a broad discussion of points raised by the daughter, covering social, work and family matters. This discussion appeared to help the daughter relax. (Observation notes 21.2.12)
They admitted her [mother] and they said she had a chest infection…Well [after] about ten days they [the hospital] said she was fit enough to go home…She wasn’t happy to come home, she didn’t feel confident to go home and I wasn’t overly happy so she said could I find somewhere for her to go for a week or two respite? So I got her into [residential care home]…she was very, very poorly… She [Coordination Centre nurse] got like a hospital bed arranged to go in and obviously the Rapid Response she got to go in because they were the only ones that could administer the morphine…She said ‘I will stay on until I’ve got everything set up’…She came back quite later in the evening and said yes everything had been set up and yes it had been funded, so there is no problems with that…I was really pleased, I’ve never had any experience before but how efficient she was and got everything all set up to me so smoothly, it was quite comforting. (Family carer NR)
Somerset end of life care coordination centre
You can always check with the Coordination Centre. And if patients phone in and say their night sit didn’t turn up or carers didn’t turn up, they [Coordination Centre] will get on to the agency and if one agency can’t help then they know other agencies they can go to. So yeah, that just takes a whole lot of worry out. It’s a box we can tick with confidence. (Community palliative care nurse RT)
I think even sort of ten years ago there weren’t that many people that…you could actually facilitate them to actually stay at home for end of life care at all. And the equipment and things that we can get available now and get in there to actually help them…I don’t know what the statistics are but I’m sure that they must be very different ten years ago to what they are now for actually people staying at home and being cared for at home now, it must be a huge difference. (Community palliative care nurse LC)
Somerset out of hours advice and response telephone line
On one occasion…[husband] was in such awful pain… So, in desperation, I rang my GP…but they were just going off duty and said…ring the [on call doctor]… and I was so unhappy about it, I thought a strange doctor will come here, they won’t know his history and…I rang the hospice Out of Hours and I spoke to a lady called [X], ..she went and got his records…she said ‘Just hang on, I know about this case’ and then she told me exactly what to give him… and then he became calmer…and he was out of this awful agony and I felt so relieved…and then what was most amazing and lovely, about an hour later, she range me back and she said ‘How are things?’.. I’ve never been so grateful to anyone in my life. (Family carer HJ)
[My husband (patient)] would sometimes phone [Advice Line] just to say “This is happening…what should be happening? … This is what I’m feeling” and so it was reassurance for him as well. (Family carer JM)
I didn't ever have to phone for ambulances or anything, all that was done and it wasn't done through the GP or the district nurse… you could just phone one number [OOH Advice Line]…and then they would get you sorted. (Family carer MI)
Discharge in reach nursing service
The Discharge in Reach nurses had an educational remit to increase the skills and knowledge of hospital staff in end of life care, particularly around the availability of community services, to improve staff confidence around patient discharge.
Certainly in the past if you lived at home on your own and you appeared to be in the last few weeks of life the chances of you getting discharged must have been zero really but I’ve certainly seen people that [the Discharge in Reach nurse] has facilitated that to happen for. (Community palliative care nurse RT)
Discussion
Limitations and strengths
Summary of results
Wider implications
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Facilitation of discharge from the acute system
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Centralised co-ordination of care provision in the community
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Guaranteeing 24/7 care