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. Further, the average age at death is set to increase markedly, with the percentage of deaths among those aged 85 or over expected to rise from 32 per cent in 2003 to 44 per cent in 2030. To respond to this, both inpatient and community care facilities must increase substantially (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 over £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, although research on this is limited.

How to do it

End-of-life care is provided in a variety of organisational settings by a range of health and social care 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 will be 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.

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

The Gold Standards Framework (GSF) is a tool for identifying, documenting and sharing patients' end-of-life care needs and preferences and subsequently planning their care (National Gold Standards Framework Centre 2011). For the dying patient, the Liverpool Care Pathway sets out best practice in caring for patients in the last hours/days of life.

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

• Download all ten priorities: Transforming our health care system
• You can also find all the references mentioned here in that version
• Listen to Candace Imison talk through the ten priorites in our audio slideshow