The results from each service will be presented and a summary statement encapsulating the ‘CMO configuration’, or working hypothesis, for each service concludes each section.
North Somerset end of life care facilitators
The End of Life Care facilitators raised awareness of end of life care in North Somerset for health professionals. These two former mid-grade community nurses, who were experienced in end of life care, were appointed full time for 18 months, which was then extended. Their aim was to raise the profile of end of life care across the county and train staff across organisational boundaries in hospices, care homes, general practices and community wards. Given the number of different organisations and the size of the county, this was ambitious.
In response to staff requests for help or their own observations that a professional group was in need, the End of Life Care facilitators provided educational sessions and advice. They directed staff to other useful services. They also oversaw strategic changes in end of life care service delivery (e.g. the introduction of ‘just in case’ boxes). In practice, the nurses undertook any task that needed doing. Although their flexibility, responsiveness and willingness to offer support was valued, they lost the ability to prioritise because the scope of their responsibilities became too broad. Moreover, as community nurses, they found it difficult to access general practice (GP) surgeries, as GPs preferred to work with fellow GPs. However, the interactive training sessions, whereby participants considered their own death, appeared powerful in changing attitudes and behaviours amongst community nursing and care home staff. These staff gained confidence in working with the dying.
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)
A GP who had been practising for nearly two decades recognised that directly attributing changes in deaths in the community to the End of Life Care facilitators was difficult, but she had noticed that staff were more confident and better prepared to help facilitate deaths in the community.
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)
With their willingness to help with any difficulty and through offering advice, direction and formal educational sessions, these highly skilled nurses with dedicated time (context) increased the confidence of professionals working with the dying (mechanism), which may have helped facilitate home deaths and fewer hospital admissions (outcome).
North Somerset end of life care coordination centre and specialist personal care team
The usefulness of the End of Life Care facilitators was enhanced by collaboration with the North Somerset End of Life Care Coordination Centre, which the facilitators promoted to professionals from hospices, community wards and care homes. The Coordination Centre organised packages of care with equipment, night nurses/night sitters and personal care staff for patients dying at home. These patients were referred by community or hospice nurses. During the six month evaluation period, 15% of patients (153/1022) had contact with the North Somerset Care Coordination Centre, of whom about a third died from non-cancer related causes .
The North Somerset Coordination Centre was located on local authority premises. It was a ‘one stop shop’ with assistance in both financial assessment and care provision. The Coordination Centre was staffed with two nurses, three administrators and a nurse co-ordinator, who approved applications for ‘fast track’ funding. Fast track funding confers extra money from Continuing Healthcare to buy in palliative support services for those with healthcare needs expected to die within a specific timeframe, usually 6–8 weeks. The Coordination Centre also had its own in-house care team that offered personal care and psychosocial support to family carers and patients. This maximised flexibility to respond to changing patient and family needs. Family carers who were allocated the in-house personal care team appeared to gain reassurance in supporting the dying relative.
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)
However not all patients received this high level of service. The in-house personal care team could only provide services for a few patients and families (28 over a 101 day period) . Other families were allocated private agency staff, with whom the Coordination Centre staff had limited communication, once the care package was put in place.
Some patients and carers stated that without the help of the Coordination Centre, the dying individual would have been admitted to hospital.
Family carer: [My wife] would have to be in a hospital or hospice or something [if care package not put in place]…Patient: Yeah, I wouldn’t be able to stay at home, no way. (Family carer MR and Patient RR)
Others mentioned how “comforting” they found the support offered.
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)
The North Somerset Coordination Centre efficiently and quickly allocated appropriate, flexible care packages. This was possible with their model of including a ‘fast track’ nurse coordinator to assess financial needs and an in-house dedicated personal care team (context). Those who used this Coordination Centre were “comforted” and reassured (mechanism). This may have contributed to their family carers’ capacity to support a community based death and avoid hospital utilisation and high levels of family carer satisfaction (outcome).
Somerset end of life care coordination centre
Although the Somerset End of Life Care Coordination Centre had the same remit of organising care packages as the North Somerset Care Coordination Centre, only ‘fast track’ patients with approved funding were eligible. Eleven percent (294/2572) of Somerset palliative patients in our study used this service. Of those, a remarkable 70% died at home and 25% died from causes other than cancer . The service model was different from the one in North Somerset as the Somerset Care Coordination Centre was led by a nurse manager and staffed by four administrators, without its own personal care staff team, additional nurses or ‘fast track’ nurse co-ordinator. To make this model successful, the Somerset Coordination Centre relied on good external relationships, particularly with referring community and palliative care nurses, care agencies and the fast track team. These relationships were further enhanced as this Coordination Centre systematically telephoned all relevant professionals (and families if appropriate) whenever a change in a care package occurred. The enthusiasm of this team and the high level of interpersonal skills of the nurse manager were particularly noteworthy. Advantages of this model were that it cost less than the North Somerset Coordination Centre and they employed night staff on contract. This meant that the chances of allocating seven night sits a week increased, which was vital to those dying at home without the support of family.
Community palliative care nurses were enthusiastic about Somerset Coordination Centre as it reduced the time spent organising care packages and freed them from the “worry” when those care packages failed.
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)
Moreover, some community staff attributed the contribution of the Somerset Coordination Centre with more people dying in the community.
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)
The Somerset Coordination Centre was efficient in supplying and monitoring comprehensive care packages, including night sits. It was staffed by a capable team that developed extensive, good quality personal relationships with relevant professionals (context). Those who used the Coordination Centre were freed from “worry” and able to access the provision needed (mechanism). This supported deaths in the community (outcome).
Somerset out of hours advice and response telephone line
Managed by the local hospice, the Out of Hours advice and response line was manned by an experienced palliative care nurse on weekday evenings until 1 am, on weekends and bank holidays. This nurse had no other duties other than answering the telephone to respond to calls from patients, family carers and professionals. After 1 am, calls went to the night nurse on duty at the hospice ward. Over the six month period, the referral database included 1029 calls for 391 patients, of whom 18% died from conditions other than cancer. The quantitative analysis suggested that the advice line was particularly useful in the last week of life. Offering advice, support and triaging, use of this service was often triggered by a patient crisis, professional or family carer uncertainty and/or requests for urgent care visits. This service capitalised on the success of the daytime telephone line run by the hospice by using the same telephone number. Almost all of the patients were already known to the hospice and so good quality electronic data on the patients were available when the call was received.
Of value to family carers was the call back to families from the advice line nurse a few hours after a crisis.
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)
Patients could also ring the advice line to receive reassurance that their experiences were “normal”.
[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)
Some family carers and patients attributed their use of the out of hours advice line to a reduction in use of paramedics, as there was now an alternative during a crisis.
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)
The advice line offered twenty four hour access to experienced palliative care nurses. These nurses offered advice and support and had access to electronic information about the patient (context). Those who contacted the Advice Line, often in a crisis, were reassured (mechanism). This contributed to high family carer satisfaction and less use of paramedics and Accident and Emergency departments (outcome).
Discharge in reach nursing service
The Discharge in Reach nursing service operated in two hospitals. Over the six month study period, 144/2572 (5.6%) of the total eligible population in Somerset received this service. Forty percent died from non-cancer conditions, the highest of any service. The ‘in reach’ component meant that the nurses identified their own caseload, rather than accepting referrals from elsewhere. This might account for the larger proportion of non-cancer patients.
Two nurses (one in each hospital) were placed in Medical Admissions Units, Surgical Admission Units and emergency departments to identify and discharge patients for whom there would be no further benefit from medical treatment. These patients did not want to die in hospital. These skilled nurses supported patients and family carers in making decisions about preferred place of care and requested care packages to facilitate deaths in the community. These care packages were set up by Somerset Coordination Centre and the Coordination Centre was key to the success of the Discharge in Reach nurses in facilitating quick discharges. Importantly, the Discharge in Reach nurses also challenged consultants about unnecessary treatments and probed family carers who had unrealistic notions about supporting the dying at home. Several participants noted how highly skilled these nurses were in conducting difficult, sensitive discussions with senior clinical colleagues, family carers and patients. The nurses themselves believed that being dedicated to this role, without other duties and with sufficient time for each patient/family, was crucial.
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.
[The Discharge in Reach nurse] is able to explain in an invaluable way the details of how patients can be supported in moving back into the community from hospital and receiving appropriate care there…The ward sister told me that [the Discharge in Reach nurse] helps staff gain confidence, adding “she has given me that confidence and that knowledge” regarding patient discharge. (Observation notes, 7.12.11)
This increased staff confidence in their own skills. The knowledge that appropriate care was available in the community may have contributed to hospital staff being willing to discharge the dying from hospital.
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)
These nurses had dedicated and sufficient time to identify patients wanting to die at home who were in hospital settings. The nurses carried out sensitive, difficult conversations with clinicians and family carers. They could then allocate appropriate care packages (with the help of the Coordination Centre) (context). The highly skilled Discharge in Reach nurses facilitated quick discharges which contributed to more people dying in the community (outcome). These nurses also increased the confidence of hospital staff (mechanism) in allowing discharges, even for those patients who lived alone.