Case study:

29 June 2010

Pilot of a patient-held advanced care plan for end of life care: Preferred Priorities for Care (PPC) in Shropshire, Telford and Wrekin

Key points

A two-year pilot in Shropshire, Telford and Wrekin to give people greater choice over where they are cared for at the end of life is already having an impact, with 94% dying in their preferred place of care.

The scheme, which runs from March 2009 to March 2011, involves patients completing and then holding their own Preferred Priorities for Care (PPC) document.

Patients and carers who have taken part have been overwhelmingly positive about the experience. Professionals also say it offers an opportunity to hold realistic discussions about an alternative plan if the patient’s first wish cannot be met.

At the moment 21% of the population across Shropshire, Telford and Wrekin die at home but according to a local audit of community palliative care (2007) up to 73% of those asked say they want to die at home.

Increasing choices and quality of life was identified as a priority in the local Palliative and End of Life Care Strategy and it was agreed that patient-held PPC documents would be one way of furthering this. The PPC is the patient’s property it was decided they should not have the PCT’s or any other logos on them. Two simple audit sheets were created to enable patients to make robust evaluation and measurement of outcomes.

A multisectoral training programme was then developed to ensure that staff introducing the document to patients had the appropriate skills and confidence. A total of 310 staff from a wide variety of backgrounds have so far taken part in this programme which enables them to train their colleagues on their return to work with the ongoing support of a mentor from the Shropshire End of Life Care Team. Initially the training programme lasted two days but this was later reduced to one.

By the end of the pilot it is expected that 200 patients will have been taken part in the scheme. So far 168 PPCs have been initiated with 48 (28%) having since died. Forty five (94%) of those who have died have achieved their preferred place of care and their personal wishes about how they spent their last months and weeks.

Patients have devoted much of the PPC document to issues about family, friends, their homes and how they wish to live their life in the last months and weeks. When they complete the document ranges from soon after diagnosis (of a neurological disease) to two weeks before death. The professionals introducing the PPC have described patient and carer’s responses as overwhelmingly positive. Patients say they are ‘very relieved ‘, ‘absolutely determined’ and ‘very motivated ‘to express their preferences and have a say in what happens to them. The documents also provide opportunities for realistic discussions between health care professionals, patients and carers about an alternative ‘plan B’ if the patient’s first preference cannot be met.

Training sessions continue to be well attended with increasing numbers from the acute trust as well as local agencies and family carers. Sessions are also planned for GPs as part of lunchtime meetings and protected learning time sessions.

The main challenge is to ensure that the momentum gained through this process is maintained and the PPC becomes part and parcel of the end of life care pathway across all sectors. This will be done through the contracting process and the Continuous Quality Improvement Network (CQIN) system.