End of life care for adults: service delivery

Impact on NHS workforce and resources

This NICE guideline on end of life care for adults: service delivery has been reviewed for its potential impact on the NHS workforce and resources.

Recommendations likely to have an impact on resources

The guideline covers organising and delivering end of life care services, which provide care and support in the final weeks and months of life (or for some conditions, years), and the planning and preparation for this. It aims to ensure that people have access to the care that they want and need in all care settings. It also includes advice on services for carers. The recommendations that will need the most additional resources to implement or potentially generate the biggest savings are listed below.

Providing multipractitioner care (recommendation 1.9.1)

Provide access to the expertise of highly skilled health and social care practitioners, when needed, for adults approaching the end of their life, their carers and other people important to them. They should have the skills to:

• meet complex care and support needs
• anticipate and prevent or minimise crises
• support people's preferences for where they would like to be cared for and die, if possible.

Providing end of life care coordination (recommendation 1.10.4)

Health and social care practitioners providing end of life care coordination should:

• offer information to the person approaching the end of their life, their carers and others important to them, about who the multipractitioner team members are (including the lead healthcare professionals in each setting responsible for their care), the roles of the team members and how services are accessed
• ensure that holistic needs assessments are offered, and the person's wishes and needs are discussed and acted on whenever possible
• ensure that care is coordinated across and between the multipractitioner teams and between care settings
• ensure that regular discussions and reviews of care, holistic needs and advance care plans are offered
• share information about the person’s care between members of the multipractitioner teams.

Transferring people between care settings (recommendation 1.11.2)

Develop systems to support the smooth and rapid transfer between care settings for adults approaching the end of their life. For example, organise services so that:

• ambulances or other transport services can move people between care settings without delay and in an efficient and compassionate way
• care packages and equipment are available to enable adults approaching the end of their life to move to the place where they would like to be cared for and die.

Providing out-of-hours care (recommendation 1.12.1)

Adults approaching the end of their life, their carers and other people important to them should have access to:

• a healthcare professional available 24 hours a day, 7 days a week, who can access the person's records and advance care plan, and make informed decisions about changes to care
• an out-of-hours end of life care advice line
• an out-of-hours pharmacy service that has access to medicines for symptom management in adults approaching the end of their life.

Context

End of life care is defined by NHS England as care that is provided in the ‘last year of life’; although for some conditions, end of life care may be provided for months or years.

Over 500,000 people die in England every year and projections suggest this number will rise by 17% between 2012 and 2030. Specialist palliative care (to relieve suffering and maintain quality of life) is mostly delivered in the last 3 months to 6 months of life, although it sometimes starts earlier in the course of a progressive life-limiting disease.

For people aged 50 and over, long-term diseases and conditions are the leading causes of death. Currently, 15 million people in England live with one or more long-term conditions. The changing demographic structure of England and the growing number of older people with degenerative diseases and dementia will mean that the balance of disease-modifying treatment with palliative care is likely to change.

Services are commissioned by NHS England, clinical commissioning groups (CCGs), and local authorities. Providers of NHS commissioned services are hospital trusts, community providers, and the voluntary sector.

Resource impact

The total annual cost of providing end of life care services for a population of 500,000 is estimated at £2.3 million. There is high variability in services currently provided across different regions, but most areas will have a significant part of these services already in place. Clinical opinion suggests that specialist areas are most likely to need the greatest increase in investment. For a health economy with 80% of services already in place, the resource impact of achieving 100% of services would be around £469,000.

Table 1 shows a range of investment of the likely resource impact for implementing the guideline (excluding ambulance services).

Table 1 Potential resource impact of providing end of life care for adults for a population of 500,000 using NICE recommendations

Investment in ambulance services should be considered locally, as this may involve commissioning additional ambulances and may have set up costs, such as the cost of vehicles and staff training. 

The following benefits are anticipated from implementing the recommendations listed above:

• Fewer emergency hospital admissions.
• Shorter stays in hospital for adults approaching the end of life.
• More people cared for and dying in their preferred place.
• More people having personalised care at the end of their life.

Support to put the recommendations into practice

• The National Palliative and End of Life Care Partnership is a group of organisations that aim to improve end of life care in England. It has produced Ambitions for palliative and end of life care: A national framework for local action 2015 to 2020, outlining 6 ambitions for care and 8 underpinning foundations. The framework will be updated to extend beyond 2020.
• NHS England is a member of the National Palliative and End of Life Care Partnership. The objectives of the NHS England End of Life Care (EoLC) programme are aligned to the Ambitions for palliative and end of life care framework.
• The Care Quality Commission inspect end of life care as an acute core service and a community health core service. The inspection frameworks are in alignment with the NICE guideline.
• Health Education England’s end of life care workstream has produced the e-ELCA (end of life care for all) e-learning programme. It includes modules on assessment, advance care planning, communication skills and symptom management, which align with the NICE guideline. This is freely available in the UK to:
  • NHS staff
  • people working in hospices
  • people with a gov.uk email address
  • social care professionals whose employers are registered with the Skills for Care Adult Social Care Workforce Data Set (ASC-WDS)
  • people with an OpenAthens login.
• Several clinical training curricula and professional standards include end of life care. This includes the Royal College of General Practitioners GP curriculum, the Joint Royal Colleges of Physicians Training Board curriculum for internal medicine stage 1 training and the Nursing and Midwifery Council standards of proficiency for registered nurses and standards of proficiency for midwives.
• The national audit of care at the end of life has published an audit report of data collected in 2018/19 from acute, community hospitals and mental health inpatient providers in England and Wales. Data was collected using an organisational questionnaire, case note review and quality survey for people who have been bereaved. This audit provides baseline data for future audits of uptake of the NICE guideline.
• The 2019/20 Quality and Framework (QOF) in England includes a new quality improvement (QI) domain. The QOF QI domain aims to support general practice to improve care in key areas and share learning across primary care networks. One of the 2 modules included in the 2019/20 QOF QI domain is end of life care. This module aims to lead to improvements in the following areas of care, which align with the NICE guideline:
  • early identification and support
  • well-planned and coordinated care
  • identification and support for family and informal care givers.
• Examples of best practice for this guideline are published on the tools and resources page, for example, the Welsh Ambulance Services NHS Trust case study on setting up an end of life care rapid transport service.