Evidence & Information
Comprehensive and robust data are necessary to measure the extent to which the outcomes that matter to the person are being achieved. This, alongside strengthening the evidence base, will help to drive service improvements. Access the End of Life Care Ambitions website here.
It is appreciated that there is paucity of local data and the amount of national evidence available for End of Life care is also limited. Because of the lack of local data, CCGs should make arrangements to collect data that they consider necessary to be assured that patients are receiving a quality end of life service from its providers.
Tools to build the evidence base
EOL National Hospital audit 2016 – Nearly half of all deaths in England occur in hospitals – 223007 out of a total of 469975 in 2014. For this reason, trust boards, managers and clinicians should recognise that a core responsibility of hospitals is to deliver high-quality care for patients in their final days of life and appropriate support to their families, carers and those close to them. Government policy in recent years has reinforced this requirement.
The importance of good end of life care cannot be overestimated. In the majority of cases, people receive end of life care that is caring and compassionate – but people from certain groups in society may experience poorer quality care because providers and commissioners do not always understand or fully consider their specific needs
A different ending: End of life care review -The importance of good end of life care cannot be overestimated. In the majority of cases, people receive end of life care that is caring and compassionate – but people from certain groups in society may experience poorer quality care because providers and commissioners do not always understand or fully consider their specific needs. Following the recommendation of more care, less pathway, the independent review of the Liverpool Care Pathway, CQC looked at ‘how dying patients are treated across various settings’. In particular, they focused on people who may be less likely to receive the good end of life care that they need.
National End of Life Intelligence Network This updated toolkit has a range of practical resources to support those involved in commissioning for person centred end of life care. It was revised in response to requests from commissioners and providers with many examples generously shared by colleagues around the country. Insight data from desktop research using for example, findings from the National Survey of Bereaved People (VOICES), accounts from people in care homes distilled from Care Quality Commission (CQC) reports, as well working through our partner organisations to access the views and opinions of people with life limiting conditions and carers with experience of end of life care, have been woven into the fabric of this toolkit. http://www.nhsiq.nhs.uk/improvement-programmes/long-term-conditions-and-integrated-care/end-of-life-care.aspx http://www.endoflifecare-intelligence.org.uk/resources/tools/
VOICES SURVEY The National Survey of Bereaved People (VOICES, Views of Informal Carers – Evaluation of Services) collects information on bereaved people’s views on the quality of care provided to a friend or relative in the last 3 months of life, for England. The survey has now been run for 5 years and was commissioned by the Department of Health in 2011 and 2012, and NHS England from 2013. It is administered by the Office for National Statistics (ONS).
National Voices This is the fourth of National Voices’ narratives on person- centred coordinated care. This narrative has been jointly published by National Voices and the National Council for Palliative Care. The narrative describes some critical outcomes and success factors in end of life care, support and treatment, from the perspective of the people who need that care, and their carers and families. http://www.nationalvoices.org.uk/pages/every-moment-counts-narrative-person-centred-coordinated-care-people-near-end-life
Living and dying with dementia in England: Barriers to care – Patients with dementia do not always receive a good level of care as the Marie Curie report suggests. It states that over the coming decades, the number of older people living in the UK is likely to rise considerably. By 2030, the proportion of the UK aged over 85 is set to double and as a result we are likely to see a significant increase in the number of people living and dying with dementia. To date much of the focus has been on living well with dementia, with little focus on the experiences of people with dementia nearing the end of their lives. For too long, the dying phase of dementia has been the forgotten aspect of what has been referred to as a ‘silent epidemic’.
EOL National Hospital audit 2015 It has been designed to ensure that the priorities for care of the dying person outlined in the document One Chance to Get it Right are monitored at a national level. National audit data will support end of life care commissioners, service providers and policymakers to audit the care and to facilitate quality improvement initiatives. The audit highlighted variation across trusts, need for workforce training and the variability and poor access to 24/ 7 specialist palliative care
A review of choice in end of life care End of life care has made great strides forward in recent years, in particular following the publication of the End of Life Care Strategy in 2008. However, we know that too many people still do not receive good quality care which meets their individual needs and wishes. For example, only just over half of respondents to the National Survey of Bereaved People (VOICESSF) felt that their relative had died in a place of their choice. At the same time the challenge of delivering consistently good experiences and outcomes for people at the end of their lives is growing. Each year, around 480,000 people die in England. This is predicted to increase to 550,000 by 2035.
End of Life Care rating maps – The data shown in these maps is from CQC inspections published up to 25 April 2016, for acute hospitals, community hospitals and independent hospices, respectively.
Other useful links
Nice Guidance for end of life care – https://www.nice.org.uk/guidance/ng31
To define relevant information and evidence and create a cross provider person-centric data set for EoLC.
- The tools and references included in the TVSCN guidance can assist CCGs in deciding on the type of information they should collect.
- To compile a comprehensive dashboard which will provide an easy indicator as to the appropriateness and quality of End of Life Services
- To connect with the End Of Life network to keep up to date with developments across the country. TVSCN generalist and specialist clinical leads work with the National team and are able to share good practice and new developments
- To engage with the TVSCN activities, such as the Commissioner Forum, which provides an opportunity to share thinking, look to support and help from peers in overcoming barriers and challenges