7. Improving primary care management of end-of-life care

What is it?

Within primary care, improving the systematic identification of patients who are at the end of life, and then providing the appropriate support; in particular, improving the co-ordination of care, continuity, quality of communication, and the provision of bereavement care.

Why is it important?

  • Two-thirds of people would prefer to die at home, but in practice only about one-third of individuals actually do (Higginson 2003).
  • The annual number of deaths in England and Wales is expected to rise by 17 per cent from 2012 to 2030, and the average age at death is also set to increase markedly (Gomes and Higginson 2008).
  • The costs of caring for people at the end of their lives is estimated to run into billions of pounds (National Audit Office 2008). Care for the 27 per cent who die from cancer is around £1.8 billion in the last year of their life, or £14,236 per patient (Hatziandreu et al 2008).
  • Wide variations exist in the quality of end-of-life care across England. Spending by primary care trusts (PCTs) on palliative care has varied from £154 to more than £1,600 per patient (National Audit Office 2008).

What is the impact?

  • Research by The King's Fund has identified many examples of how improvements in end-of-life care can have a high impact on patient experience as well as the experience of family members and carers (Addicott and Ross 2010).
  • Some evidence suggests greater co-ordination of care can improve quality without incurring any additional costs (Addicott and Dewar 2008). There may be some scope to make cost savings, particularly through a reduction of unnecessary admissions into the acute setting.

How to do it

End-of-life care is provided in a variety of settings by a wide range of professionals. To meet patients' needs a whole-systems approach is needed that co-ordinates care across professional and organisational boundaries (Addicott and Ross 2010). GPs are in a central position to do this.

Commissioners should be driving a whole-systems approach that focuses on the availability of a range of services across the care pathway, such as:

  • facilitation of discharge from the acute setting
  • rapid response services during periods out of hospital
  • centralised co-ordination of care provision in the community
  • guaranteeing 24/7 care.

The integration of services is currently hindered both by the way that end-of-life care is funded and by the contracting mechanisms used. Commissioners should contract for a pathway or package of care in order to encourage providers to work together to deliver a more streamlined service. However, packages should be structured so that they can cater for a range of individual needs and preferences (Addicott and Hiley 2011).

Pooled budgets offer the most concrete approach for encouraging integration across providers. Commissioners should start small in their approaches to using pooled budgets, and focus on areas where the relationships, common pathways and data exist to support such a model.

It will also be important to ensure that end-of-life care features in any care pathway to ensure that we shift the focus beyond terminal cancer.

Useful resources

  • The Gold Standards Framework (GSF) is a systematic, evidence-based approach to help clinicians to a) identify patients in the final years of life, b) assess the needs, symptoms and preferences of those patients, and c) plan care on that basis, enabling patients to live and die where they choose.
  • The National End of Life Care Programme provides policy guidance, and education and training to health and social care services across all sectors in England to improve end-of-life care for adults.
  • The Liverpool Care Pathway for the dying patient is an integrated care pathway that is used at the bedside to drive up sustained quality of the dying in the last hours and days of life.

For further information