Dying is a part of life. For everyone, death is a unique experience which is shaped by many factors; notably an individual’s physical condition, their mental and spiritual well-being, and the care provided to them. A “good death” is not easily defined given subjectivity, however The End of Life Care Strategy (1) defines it as being treated as an individual, with dignity and respect, being free of pain and other symptoms, being in familiar surroundings with your family and friends.

End of Life care aims to offer individuals choice around symptom control, their care and their preferred place of care (PPC) and death. People reaching the end of their life may experience a range of needs. Managing these needs requires a multidisciplinary approach encompassing teams across the health, social and voluntary care sectors. Offering patients care centered on their preferences, psychological, spiritual and social needs is the cornerstone, as is involving family, friends and carers of dying individuals.

The Office for National Statistics (ONS) reported a 5.6% increase in deaths in England and Wales in 2015 - the greatest annual increase for half a century. Whilst these figures are set against a backdrop of a longstanding decrease, January 2017 saw a 21% increase in deaths compared with January 2016 (2). An increasing older and frailer population means more people dying each year, and increasingly complex populations using services.

Of all deaths, three quarters are expected with individuals experiencing an end of life (EOL) phase with a life limiting long term illness (LLLTI) – 530,000 died in 2015 England and Wales, so almost 400,000 could have benefited from EOLC services (3–6). Whilst EOLC is generally well regarded nationally, reports and research frequently identify sub-standard care in the EOLC settings (7–10). The Parliamentary and Health service Ombudsman’s report Dying without dignity (2015) outlined some key themes related to EOL care shortcomings. These included poor recognition of the dying process, poor symptom control, poor communication and inadequate out of hours services (10).

This JSNA will explore what is known about palliative and end of life care (EOLC), which groups of individuals use these services, and what we know about services in Nottinghamshire. Recommendations will be made based upon the findings the JSNA, and offer an insight into overarching issues that act as barriers to good EOLC.  

Unmet need and gaps

Service gaps and needs are discussed in-depth in section 8. The key themes supporting the recommendations are:

• A culture amongst generalist providers that does not always see EOLC as “their business”.
• Society also still sees EOL as a taboo subject.
• Clinical staff may fail to recognise dying and/or disease trajectories, and may not always enact good EOLC through ACP and palliative registration (EPaCCS).
• The use of EPaCCS (electronic palliative care co-ordination service) is very variable amongst GPs, with improvements in particular surgeries required to embed its use of as a cultural norm in the community setting.
• There is also a lack of use in hospital settings and other services. Hospitals would benefit greatly from routine access to EPaCCS as many EOLC discussions and plans are made when EOL patients deteriorate and require admission to hospital. EPaCCS in hospital would alleviate some pressure from community EOLC providers, but also encourage a positive culture amongst hospital doctors regarding EOLC.
• Finally, there are many barriers to achieving death in an individual’s PPC. Barriers to achieving a death at home include:
  • A lack of understanding amongst family/carers of EOL/dying individuals,
  • Gaps in services e.g. night sitter availability and bed based specialist care.
  • Gaps in EOL education
  • Unequal access to EOL/palliative services which currently see a mismatch in service need and use amongst older patients, and those with non-cancer diagnoses.  
  • Recommendations for consideration by commissioners

Dr M Zaid Kureeman 

muhammad.kureeman@nhs.net