4.1 Identification and assessment (quality statements 1, 2 and 3)

4.1.1 Identification (quality statement 1)

The benchmark referred to in section 3 highlights that:

  • 1.12% of the adult population in England die each year and of this approximately 25% have unexpected deaths. Therefore it is calculated that the number of adults needing end of life care services is 0.83% or 830 per 100,000 population aged 18 years or over.

The benchmark has synergy with the end of life QIPP programme 'Find your 1% campaign', which has some resources to assist commissioners and providers.

As highlighted previously QOF data show the number of people on a palliative care register (people in need of palliative care or support) is 0.1% of the population or 75,000 people in England. This is approximately 16% of the number of people who die every year (see section 3) and 73% of these registrations are of people with a cancer diagnosis. Commissioners may wish to use their local QOF palliative care register as a starting point for understanding how effective current services are in recording and identifying people with end of life needs. Alternatively, if electronic palliative care registers exist (see section 4.3.1) commissioners may wish to use these as an alternative to QOF palliative care registers.

Successful identification of people entering end of life needs a willingness on the part of the individual and the healthcare professional to enter into a conversation about end of life. A lack of open and honest communication between health and social care staff and individuals about end of life care can hinder this identification[27]. This barrier is related to the taboo around discussing death and dying. To support the implementation of the 'End of life care strategy' the Dying Matters Coalition is delivering a programme of national work to raise awareness of death and dying, thereby helping to make conversations about death and dying more commonplace. Commissioners may wish to consider resourcing local awareness raising activities and the Dying Matters Coalition provide a variety of resources, such as posters and leaflets, which can assist with relatively low cost local promotional activities.

Although localities should work to identify people approaching the end of life, it is important to recognise that not all people will wish to have conversations about death and accept that their death is approaching. For some people who do not wish to engage in the conversation, the healthcare team still needs to plan services that best support the person's needs, although these might not be formally recognised by the person as part of end of life care services. For example, appropriate social care support, respite care, or provision of benefit support. Commissioners may wish to ask providers to demonstrate they have local guidance in place regarding approaching conversations about the end of life and the 'Finding the words' workbook and DVD provides useful information. The 'Dying matters' website provides a range of resources to support both the public and professionals in this sensitive area.

4.1.2 Communication and information (quality statement 2)

The National End of Life Care Programme has identified communication as one of the core competencies (see section 4.6). Commissioners should specify that providers can demonstrate that all staff involved in end of life care have the required competencies in communication. The level of competency is dependent on an individual's role and the National End of Life Programme provide specific guidance on commissioning end of life care communication training and a benchmarking tool to help commissioners, providers and educationalists assess the quality of communication education. The Department of Health has commissioned an electronic learning course to support the implementation of the 'End of life care strategy' and this includes a number of different sessions relating to communication skills. It is available free to health and social care staff (see section 4.6). There will be costs involved in staff time to undertake this training. Sensitive communication includes ensuring that the physical environment is appropriate and the documents 'Routes to success: achieving quality environments for care at end of life' and 'Environments for care at the end of life' identify important factors to consider when planning environments for the delivery palliative and end of life care services.

Commissioners may wish to specify that information (for people with end of life care needs and their families and carers) is available in a variety of accessible formats and is culturally appropriate and accessible to people with additional needs such as physical, sensory or learning disabilities and for people who do not speak or read English. People approaching the end of life and their families and carers, should have access to an interpreter or advocate if needed. A comprehensive health and social care needs assessment will help commissioners to better understand the resources needed to ensure that local services are equitable and fair and appropriate for the needs and preferences of people in the local population. Written information for people, their family and carers is available through the NHS Choices website, the National End of Life Care Programme, Dying Matters Coalition, The Marie Curie Palliative Care Institute Liverpool and the Childhood Bereavement Network. These may provide a starting point for the development of local literature.

4.1.3 Assessment, care planning and review (quality statement 3)

The local care pathway should provide the opportunity for people who have been identified as approaching the end of life to be offered comprehensive and regular holistic assessments, to discuss their preferences and needs and to document these in a care plan. If appropriate, this may include advance care planning and could result in advance statements, for example preferred priorities for care, advance decisions to refuse treatment, and do not attempt cardio-pulmonary resuscitation decisions.

A comprehensive assessment is multidisciplinary and may need the input of health and social care professionals, as well as other support services. It is important that assessments from multiple professionals are undertaken in a coordinated manner, and the 'End of life care strategy' highlights poorly coordinated services resulting in people being subjected to numerous assessments by different health and social care staff without reference to each other's assessments. For further information about coordinating services see section 4.3.1.

With the person's permission, if appropriate, care plans should be accessible to all staff who have a legitimate reason to need it including out of hours and accident and emergency units. Electronic care plans are a means of facilitating this sharing[28]. An information standard is being developed to support electronic palliative care coordination systems, and development of electronic care plan systems should correspond with this standard. In section 4.3, the use of electronic palliative care coordination systems is discussed and commissioners may wish to explore opportunities to link together electronic palliative care coordination systems and care plans. Further details are available in the 'End of life locality registers evaluation' report.

Commissioners may wish to specify use of a locally developed integrated care pathway or a nationally available resource. National resources include the following tools which include holistic assessment and care planning:

  • The Gold Standards Framework is a common toolkit and framework which can be used in many health and social care settings.

  • Preferred Priorities for Care is an advance care planning tool which enables people to consider and document their preferences regarding their future care.

Commissioners may wish to refer to 'Capacity, care planning and advance care planning in life limiting illness: a guide for health and social care staff'. The publication 'Holistic common assessment of supportive and palliative care needs for adults requiring end of life care' may also be helpful to commissioners because it highlights a range of existing assessment and planning tools, guidance and relevant policy, signposting to other resources if appropriate.

  • NICE has accredited the process used by NICE to produce guides for commissioners. Accreditation is valid for 5 years from November 2011 and applies to guides produced since November 2008 using the processes described in 'Process manual for developing guides from NICE for commissioners: Information for internal NICE teams' (2011). More information on accreditation can be viewed at www.nice.org.uk/accreditation