End of Life Care

End of life registers

Identifying patients who are coming to the end of life is key to better palliative care, allowing for coordination and planning of care, prevention of crisis and support for families and carers. Maintaining a register of patients who are approaching the end of life is a tool to allow for better care planning and coordination.

There are two forms of register in operation – one relates to the register of palliative care patients held within GP practices. Patient on this register should be reviewed on a 3 monthly basis by the practice health care team.

Palliative care register within GP practices

The following table shows the numbers of patients who have been included in the following QOF indicator. The guidance for this indicator is that they should be included if their death in the next 12 months can be reasonably predicted, they have advanced or irreversible disease and clinical indicators of progressive deterioration or if they are entitled to a DS1500 form.

This shows that in most localities and overall there has been an increase in the number of patients being placed on palliative care registers within GP practices.  However there are about 3200 deaths per year within NHS Bedfordshire area. It is recognised that the number of deaths per year is about 1% of a GP practice caseload and there are national campaigns to encourage GPs to identify these patients (see http://dyingmatters.org/gp).

Partnership for Excellence in Palliative Support (PEPS)

 A second form of register is in place within the local health economy in the form of the PEPS project. This was initiated in 2012 as a pilot scheme. PEPS provides a single, 24-hour telephone point of access for palliative care services, bringing together 15 organizations in a ‘hub and spoke’ model formally bound together by a memorandum of understanding. It aims to improve the care experience for patients in the last 12 months of life and to help health and social care professionals provide care in the place where patients choose to be at the end of their lives. It uses a shared electronic record to ensure patients’ records are readily available. These records also fulfil the requirement to have an electronic (EPaCCS) register of palliative patients – this is a national initiative.

Evaluation of this pilot has been undertaken; this evaluation included both quantitative and qualitative information. In the year of operation the service registered 1051 patients with the service – the majority referred from the Macmillan nurses. Of the 620 patients who died, 65% died at home and 19% in hospice.  With 11% place of death within acute hospital this compares favourably the BCCG figure of 48.7%. 

91% of patients within PEPS had a diagnosis of cancer. However cancer accounts for 23% of deaths so it would appear that patients with cancer are being referred and accessing the service but that those with non-cancer diagnosis at the end of life are not. Although identifying patients approaching the end of life is more complex in the patients with non-cancer diagnosis.

Geographically the service was used by 567 patients in Borough Bedford which is 46.3% of the number of deaths within the Borough. Within Central Bedfordshire 483 patients were on the PEPS register which represents 25.4% of deaths within the Local authority area. It would appear that the PEPS service within the pilot year of operation has developed more strongly in the north of the county and this should be addressed as the programme develops.

An examination of emergency hospital admissions before being registered with the PEPS service and afterwards indicated that there may be a reduction in admissions, although without a comparative group these findings need to be viewed with caution. However the case for coordination of end of life care through the development of electronic palliative care (EPaCCS) has been articulated and supported nationally.

Last updated Tuesday, 12th July 2016