Limitations and strengths
In terms of strengths, realist evaluation methodology was helpful when faced with multiple avenues of enquiry and large volumes of data, as we revisited ‘what works for whom and in what circumstances?’ We collected accounts from patients, family carers and professionals from various backgrounds (hospital, community, hospice), observed services at different time points and gathered copious documentation. Ideally we would have liked to audio record more interviews, but as with many service evaluations the short time frame made this difficult. However through iterative cross comparisons of multiple data sources, the robustness of our findings were strengthened. Furthermore, as a ‘real world’ service evaluation this study has valuable, applicable information that commissioners and policy makers can utilise to inform their decision-making, in line with recommendations from the End of Life Care Strategy 2008 . In fact, findings from this study have already directly fed into the development of a new End of Life Coordination Centre in Bristol.
Generalisability (or lack thereof) is a particularly contentious issue within qualitative research [20–22]. Qualitative research is not generalisable in the same way as quantitative research, because the reader, not the researcher, undertakes the transfer processes. However, qualitative research offers the opportunity for what Stake calls “naturalistic generalization”, whereby readers “find descriptions that resonate with their own experiences…[and then] transfer knowledge from a study sample to another population” . Realist evaluation offers a halfway house between quantitative generalisability and qualitative transferability through the generation of concrete, explanatory ‘middle range’ theories suitable for testing in future studies. Each ‘CMO configuration’ stated in the concluding paragraphs for each service in the results section offers opportunities for further testing of findings.
Summary of results
In summarising findings across the Delivering Choice programme, we found that highly skilled, experienced, customer-focused palliative professionals with dedicated and sufficient time were important. These staff were willing to have difficult conversations about death and the practicalities of caring for the dying with family carers, patients and/or clinical colleagues (context). They had access to resources in the community to support homecare and delivered excellent services (context). This engendered confidence and reassurance to staff, family carers and patients (mechanism). The reassurance for patients and family carers stemmed from validation that their experience was ‘normal’ and that experienced care givers, often who knew the patents well, were available in case of emergency (mechanism). The confidence for staff came from their improved skills in working with those at the end of life and knowledge that their patients would be well looked after (mechanism). This may have contributed to high family carer satisfaction, low hospital utilisation and more deaths in the community amongst Delivering Choice service users (outcome).
Like many new services, what limited the success of Delivering Choice was sporadic, patchy use. Referring professionals often (erroneously) reported that services were only for cancer patients and/or those who received ‘fast track’ funding. Possibly, due to confusion about these eligibility criteria, results from routine data found that in Somerset less than a quarter of all potential patients accessed Delivering Choice services (616/2572). In North Somerset that fell to just over a fifth (213/1022). The use of services amongst those with conditions other than cancer ranged from 18-40%. Moreover, ways to identify the dying early in their trajectory were limited and so the median time to death for service usage was 6–20 days . This suggests that although of excellent quality and successful in steering its users away from hospitals, Delivering Choice was mainly ‘working’ for those with cancer who had obtained fast track funding and were close to death. To really harness the potential of Delivering Choice services, strategies need to be developed and implemented to reach non-cancer patients and those at earlier stages of the dying trajectory. This appears particularly possible with the location of Coordination Centres within social services on local authority premises, as early warning systems could be set up with those requesting social care packages. Services where the providers identified their own caseload (i.e. Discharge in Reach nurses) also had the highest success rate in targeting non-cancer patients.
Our results suggest that the success of Delivering Choice appears to partially rely on charismatic, talented staff. The enthusiasm and attitudes of these professionals may be eroded by threats to the stability of funding, re-organisations, policy changes, burn-out, resignations, fewer staff etc. In fact, we witnessed this at a ‘Celebration Evening’ with the service providers, funders and commissioners in December 2012. The effects of the Health and Social Care Act 2012, which have resulted in a major re-organisation of the National Health Service, were already in evidence. In six short months since completing fieldwork, there appeared little celebration and much dismay at the changes to the services and staff morale. However, the success of these services was not entirely due to charismatic staff, as the original team from one service experienced poor leadership and low morale, but the quantitative data still suggested that the service was successful, as services users visited or died in hospital less frequently. Other factors such as delivering an efficient service and having access to resources to support homecare appeared sufficient (in this case) to generate reassurance amongst family carers and confidence amongst referring staff. Given the complexity of end of life care service provision and the potential confounders in a non-randomised study, further research, especially into Coordination Centres which are being established across the country, would be useful, ideally using a mixed methods design testing the CMO configurations identified in this study.
In considering the wider implications of these findings, ‘improving primary care management of end of life care’ was recently identified as one of the top ten priorities for Clinical Commissioning Groups, which are the organisations in England that allocate funding to services . An approach was encouraged with:
In evaluating Delivering Choice, we found evidence that the Discharge in Reach service facilitated rapid discharge from the acute sector with the support of the Somerset Coordination Centre. The Coordination Centres efficiently centralised coordination of care provision. Moreover, the Out of Hours advice line that was available 24 hours a day and went beyond giving advice to patients and family carers by resolving problems where possible. In many ways, Delivering Choice appears to meet these policy recommendations.
This is important, given the policy push to increase the numbers of those dying at home. The burden of homecare is on family members with little or no experience of the dying [25, 26]. Family carers and dying patients need reassurance from trusted professionals with experience in palliative care, especially during a crisis, otherwise they turn to hospitals and emergency services. Some may argue that community nurses already fulfil this role. But community nurses are generalists, not specialists, with increasing demands on their time. Our study also suggests that community nurses also appreciated the confidence that came from working with the specialised support of experienced palliative care staff.
To be effective, palliative care professionals possessed explicit formal knowledge based on clinical experience, referral protocols and guidelines and, equally importantly, informal knowledge of health and social care systems to act on the behalf of families and patients. For example, the nurse manning the advice line knew that a particular community nurse would know where to check for a replacement for a faulty mattress at a local hospital. In another instance, a Discharge in Reach nurse set up a placement for a patient in a care home which could potentially provide wireless access for his laptop; she knew which care homes had this facility which was important to this particular patient. We would argue that few community nurses possess this sort of information across an entire health and social care economy.
With the rising demand for palliative care provision out of hours  and with the increasing fragmentation of service providers across the social and healthcare system , family carers and patients will have ever greater need of experienced, committed, proactive staff with this type of informal knowledge. They offer an inter-organisational overview across the voluntary, social care, acute and community healthcare sectors to help navigate patients and families through the system round the clock. Specialised end of life care services such as End of Life Care Coordination Centres, Out of Hours advice and response lines and Discharge in Reach nurses appear particularly successful in addressing this need. This will help to meet the policy objectives of greater home deaths.