Discussion

Patients who used Delivering Choice services were less likely to die in hospital, have emergency admissions or visit ED within 30 or 7 days before death than those who did not use Delivering Choice. The two coordination centres appeared to have the biggest impact.

There are a number of limitations to this study. Randomisation of patients was not practical in this service development. We addressed potential confounders such as age, gender, deprivation and cause of death. However, there are other ways in which the patient groups may have differed. For example, we were unable to include data on comorbidities in the logistic regression analyses. It is also possible that patients referred to the Delivering Choice services were people that a district nurse or GP considered were suitable to die at home, or who possibly wished to die at home, and the service was used to help facilitate this. This potential confounding by indication would result in increased uptake of the service by those who might have died at home anyway. In view of the limitations of the study design, we have reported associations but can make no claims for causal relationships.

Less than a quarter of all potential patients accessed Delivering Choice services. Moreover, about two-thirds of Delivering Choice service users had cancer while only about 30% of the total eligible population died from this condition. It is possible that by including a high proportion of patients with cancer, the DCP achieved more home deaths. Indeed, in the years 2008–2010, which preceded the introduction of Delivering Choice, 26% of patients with cancer in North Somerset and 28% of patients with cancer in Somerset died at home compared with 18% and 20% of all deaths being at home.6 However, among all patients with DCP, the proportions of deaths at home were 41% and 54%. Even among patients with cancer this represented a substantial increase in proportions of people dying at home.

The most effective components of the DCPs in both counties appear to be the care coordination centres. A qualitative evaluation of the components of Delivering Choice identified a number of factors that contribute to further understanding of the effectiveness of the individual interventions.2 The care coordination centres in the two counties operated in different ways. The North Somerset centre had an in-house model that included a fast-track coordinator, nurse assessors and its own team of personal care workers (GSWs). This maximised their flexibility to respond to patient and family needs, and this was particularly valued by families.3 Co-location with social service staff meant that the centre was well placed to identify potential patients early in the referral process for end-of-life care. Although the Somerset Care Coordination Centre had the same key function of organising care packages as the North Somerset Care Coordination Centre, the model was different. The Somerset Care Coordination Centre was led by a nurse and staffed exclusively by administrators, without any in-house care staff, additional nurses or fast-track coordinator. Thus to make this model work, the Somerset centre was heavily reliant on high-quality management and good external relationships, particularly with community and palliative care nurses and private care agencies. However, both services were valued for providing fast and efficient access to care packages and equipment. Previous systematic reviews have provided conflicting evidence with suggestions that specialist palliative care input at home can reduce general healthcare use and increase family and patient satisfaction with care but not all the evidence is supportive of this.7 ,8

As only a third of patients accessing Delivering Choice had non-cancer diagnoses, this would suggest that primary healthcare teams should be encouraged to identify more patients for a palliative care approach and service providers should also redesign services that are manifestly appropriate for non-malignant patients. The study also highlights the difficulties of indentifying palliative patients in a timely way as half of Delivering Choice patients came into contact with the services just 6–20 days before death. Previous research in Scotland has identified that encouraging GPs to identify palliative care patients can be beneficial as 60% of patients on the GP palliative care register died at home, whereas 60% of people who were not on the palliative care register died in hospital.9 ,10 However, GPs find early identification of non-cancer palliative care patients to be particularly challenging.11 Therefore, other interventions to improve the identification of patients for palliative care need to be put in place, in addition to providing services such as Delivering Choice for those already identified to be at the end of life. If services can identify and care for patients earlier, there is a possibility that hospital use at the end of life could be reduced further in line with national policy.1

In future studies, further evaluation of the components of the DCP that seemed to be most beneficial would be useful.2 Although randomised controlled trials of complex interventions are costly and difficult to undertake, the addition of trial evidence to the current literature would provide more robust evidence for those who commission and deliver services.