End of life care is care that affects us all, at all ages; the living, the dying and the bereaved. Reports and investigations too frequently identify poor care and we have a responsibility to do better. Around half a million people die each year and this is set to increase in line with the growing older population.
Context and challenges
- In England and Wales 84% of deaths in 2013 were of people aged 65 or older and 39% were of people aged 85 or older.
- The number of young adults (18 to 40) living with life-limiting conditions such as cerebral palsy and multiple sclerosis that need earlier palliative care in England is estimated to be 56,000. The prevalence of life-limiting conditions in this age group has increased from 26.0 to 34.6 per 10,000 over the last ten years.
- Current population and mortality trends in England and Wales suggest that 25% more people will die each year by 2040
- It is estimated that improved recognition of palliative care needs and services outside hospital could improve care and reduce hospital costs by £180 million per year.
- Nobody likes talking about death and dying.
- Death is often seen as a failure of treatment.
- Dying, death and bereavement are not primarily health and social care events; they affect every aspect of people’s lives and experience.
NHS England is working with the government and partners from across the health and care system to improve palliative and end of life care across the country.
The End of Life Care team at NHS England has developed three workstreams that come together to support system wide action and improvements in end of life care. These workstreams are:
- Enhancing physical and mental wellbeing of the individual
- Transforming experience of End of Life Care in the community and hospitals
- Commissioning quality services that are accessible to all when needed
NHS England is a member of the National Palliative and End of Life Care Partnership, and jointly developed the Ambitions for palliative and end of life care: a national framework for local action 2015-20, published in 2015.
NHS England is working with the government and partners across the health and care system to deliver the End of Life Care commitment announced by the government. The six commitments set out by the government closely align with the Ambitions for Palliative and End of Life Care framework.
Personal health budgets in end of life care
Personal health budgets are one way for people in their final weeks and months of life to have a more personalised experience of care, by giving people more of a say in the care they receive, and helping to ensure it meets their individual needs and preferences. Five areas across the country have been leading the work to develop and provide personal health budgets in end of life care, which support the delivery of the Ambitions for palliative and end of life care framework and the Government’s end of life choice commitments, and are part of ambitions to ensure 50-100,000 people benefit from a personal health budget by 2020/21.
Evaluating the impact of hospice care on hospital use at the end of life
NHS England has commissioned Hospice UK to perform a large evaluation of recent innovations in hospice-led care at the end of life. Recent changes to hospices’ care provision have aimed to reduce the number of people dying in a hospital bed who have no clinical need or wish to be there. NHS England’s and Hospice UK’s evaluation will seek to test the effectiveness of these programmes using hospital record data. More information about the project and the use of data can be found on the Hospice UK website.
Delivering high quality end of life care for people who have a learning disability
Resources and tips for commissioners, service providers and health and social care staff
Research indicates that people with a learning disability are more likely to experience poor general health and to have high levels of unmet physical and mental health needs. They are also more likely to experience poor quality end of life care.
In August 2017, NHS England, in partnership with the Palliative Care for People with Learning Disabilities (PCPLD) Network published Delivering high quality end of life care for people who have a learning disability – Resources and tips for commissioners, service providers and health and social care staff to support commissioners, providers and health and social care staff to reduce inequality in palliative and end of life care for people with a learning disability, and achieve the Ambitions for Palliative and End of Life Care.
The resource was developed in consultation with Public Health England and a range of commissioners, providers and professionals working within palliative and end of life care and learning disability settings. People with lived experience also helped to develop the guide.