Nottingham Insight

End of life (2017)

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Topic title End of life
Topic owner Rachel Sokal
Topic author(s) Caroline Keenan
Topic quality reviewed January 2017
Topic endorsed by Nottingham City Clinical Commissioning Group Long Term Conditions Strategic Group
Current version 2016/17
Replaces version 2012/13
Linked JSNA topics

Executive summary


This assessment examines end of life care in Nottingham City which encompasses the holistic assessment and management of the full range of physical, psychological, social, spiritual, cultural and environmental needs of patients and their families and carers in their place of choice, during the last years, months or days of life and after death. 
End of life care focused on achieving quality of life for patients and their families, friends and carers is provided by a range of people including informal carers, medical, nursing and other health and social care professionals and within a range of settings including people’s homes, hospitals, hospices, palliative care units and care homes.  End of life care provision must be person-centred and coordinated and commissioning should place citizens at the heart of its approach, as illustrated in Figure 1.

Figure 1: The person centred coordinated end of life care approach

The national End of Life Care Strategy (Department of Health, 2008) sets the standard for high quality individual-focused end of life care that enables people to die without symptoms in the company of family, friends and carers in a place of their choosing.  The Strategy recognises the importance of coordinated care within teams and between services in primary and secondary care.   With 33% of informal carers reporting that hospital services do not work well together with GP practices and other services outside of hospital (Office for National Statistics, 2015c), a whole systems approach to end of life care remains of paramount importance.  In Nottingham City major progress has been made towards this approach with the introduction and development of the Electronic Palliative Care Coordination System (EPaCCS).

The Nottinghamshire Guideline for Care in the Last Year of Life acknowledges that end of life care is the responsibility of all health and social care providers that provide for people with less than one year to live, people with a chronic and eventually fatal illness and people diagnosed with a condition from which they will eventually die.  The guideline is focused around the five priorities for care of a dying person: promoting recognition of the diagnosis; communicating with patients and their families and carers; achieving choice; provision of support to families and carers; and recording the patient’s individual care plan (Nottinghamshire Healthcare NHS Trust, 2015).

This assessment shows that whilst quality and equity of end of life care in Nottingham City is improving there are some areas within which further improvement is required.  With projected increases in future demand for end of life care and complexity of the citizens who would benefit from it, it is important that the whole system approach embedded in Nottingham City continues to develop and evolve.

Unmet needs and gaps

  • Approximately 54% of those able to benefit from end of life care have been identified according to EPaCCS and Quality Outcomes Framework registrations;
  • Approximately 55% of those able to benefit from end of life care have accessed one or more formal community end of life care service (defined as access to the End of Life Community and Coordination Service, Macmillan and/ or the Primary Integrated Care Service);
  • There is a need to improve the support that enables people to die in their preferred place;
  • Evidence suggests that inequity according to diagnosis exists in identification and service provision.  In particular, patients with a cancer diagnosis are over represented in identification of end of life through EPaCCS and in access to formal end of life interventions;
  • Research indicates a level of inequity in access to services according to ethnicity, sensory impairment, learning disability and vulnerability;
  • There is a need for culturally competent practitioners across the spectrum of end of life care;
    Local views call for the introduction of end of life care as soon as it is known that a diagnosis is terminal; and
  • Local views support the encouragement and promotion of discussions relating to death from an early age.  The culture of not wanting to discuss the subject needs to be overcome.

Recommendations for consideration by commissioners

  • Conduct an audit focused on end of life identification and access to services with a view to improving both of these factors;
  • Increase the recording of preferred place of death and the proportion of deaths that take place in the preferred place through continuing to promote EPaCCS and access to formal end of life care services;
  • Improve equity of diagnosis in EPaCCS registrations and access to formal end of life interventions;Ensure end of life care provision is equal and proportionate across sensory impairment, learning disability, ethnicity and vulnerability;
  • Promote the identification of end of life supported by EPaCCS across all service delivery;
  • Create a positive culture in which citizens and practitioners are able to discuss the end of life of themselves, their families and the people they care for in an open and comfortable way;
  • Develop an inclusive process by which patients and their families and carers (including those from ‘seldom heard’ communities) can provide feedback to providers and commissioners about their experiences and implement a robust system to respond;
  • Ensure that religion and belief awareness training for practitioners is regular enough to meet both staff turnover and the fluidity of Nottingham’s population; and
  • There is a need for improved access to EPaCCS amongst both GPs and healthcare professionals in secondary care. Currently, the use of EPaCCS as a tool is limited by a lack of access from certain providers – notably acute services and secondary care.  An audit should consider and set quality parameters for transfer of information from one care setting to another.

Key contacts

Caroline Keenan
Insight Specialist – Public Health
Nottingham City Council

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