570 likes | 587 Views
Professor Julia Verne, Head of Clinical Epidemiology at End of Life Care, leads a project on better understanding end of life care through improved measurement and monitoring. This project aims to raise the profile and improve the commissioning of end of life care, addressing key issues such as frailty, mental capacity, cost containment, and social services. By analyzing trends in deaths and demographic changes, the project seeks to provide insights into the changing patterns of death and the needs of older adults. Join us in exploring the factors associated with place of death, the challenges in social care for older people, and the importance of measuring what matters in end of life care.
E N D
Measuring what’s important in End of Life Care Professor Julia Verne Head of Clinical Epidemiology. End of Life Care Lead Public Health England
Better understanding End of life Intelligence Network (PHOs, charities, researchers, key users) Better commissioning Raising profile Research Improved measurement monitoring
Ethics Issues – Population Level • Frailty and death in old age • Mental Capacity • NHS drive to contain costs • Social Services - severe cost pressures • Medical Model of End of Life Care • Inefficient systems have consequences for last days of life – multiple transfers- Harm • Variation in Quantity and Quality of Provision – Post-code lottery Nicola Bowtell
Numbers and Percentages of deaths in England , 1963 and 2014 Source: NEoLCIN ; PHDS, derived from ONS Mortality National End of Life Care Intelligence Network
Trends in number and percentage of deaths by age (under 65 years, 65 and over, 85 and over), England 1963 to 2014 Source: NEoLCIN ; PHDS, derived from ONS Mortality National End of Life Care Intelligence Network
Ageing population: Percentage of older people in the UK 1985, 2010, 2035 Next 20 years number of people: >85 in England will double >100 will quadruple Now “aged society” By 2035 “super-aged society” Nicola Bowtell
Not just aging but changing demography Source : Lievesley –The future ageing of the ethnic minority population of England and Wales, 2010 Hospice23 Annual National Conference 17102015
Trends in deaths in England, 1940 to 2036 Sources: Mortality -Office for National Statistics (ONS) Death Registrations Summary Tables, England and Wales www.ons.gov.uk/ons/publications/re-reference-tables.html?edition=tcm%3A77-370351 Projections-ONS Subnational Population Projections with Components of Change (Births, Deaths and Migration) for Regions and Local Authorities in England: Table 5 www.ons.gov.uk/peoplepopulationandcommunity/populationandmigration/populationprojections/datasets/componentsofchangebirthsdeathsandmigrationforregionsandlocalauthoritiesinenglandtable5 National End of Life Care Intelligence Network
How do people die?Changing patterns of death in older populations
Cause of death (trend) Hospice23 Annual National Conference 17102015
Chronic illness in the Elderly, three typical trajectories: (schematic) after Lyn et. al. (2003) Source: NEoLCIN after Lyn et. Al. (Lynn, J. and Adamson, D. M., (2003), Living Well at the End of Life: Adapting Health Care to Serious Chronic Illness in Old Age, Santa Monica, CA: Rand Health. National End of Life Care Intelligence Network
Place of death, death type and end of life care tools, 38 Care homes in Southern England (n=2,444 deaths) Source: Ennis, L., Kinley, J. Hockley, J. and McCrone, P. (2015). P19 http://hsm.sagepub.com/content/28/1-2/16.full.pdf+html National End of Life Care Intelligence Network
Trend of death due to pelvic cancer with age, number of deaths per year, 2004 to 2013 Source: ONS Mortality Data
How do we care for people?What do people want?What can we measure?
Which of the following would be most important to you regarding how you spend your final days? Hospice23 Annual National Conference 17102015
Distribution of place of death in England, 2013 and 2004 Nicola Bowtell
Exploring some of the main factors associated with place of death for older people
Factors associated with place of death Nicola Bowtell
Older persons living arrangements Nicola Bowtell
Older persons health and caring Nicola Bowtell
Older people and living alone: % of usually resident population living alone by age group, 2011 Nicola Bowtell
Adult social care demand, spending and activity, 2009/10 to 2014/15 There are huge issues around the funding of care being in crisis, but there is a deeper and hidden crisis around the quality of care. (Age UK, evidence to Select Committee on Social Care, Para 68 , vol 1) Nicola Bowtell
Social care for older people – Home truths (Kings Fund and Nuffield Trust 15 September 2016 ) • impact of cuts in local authority spending on social care providers and on older people, their families and carers. • older people about their experiences of social care. • Social care providers under pressure, struggling to retain staff, maintain quality and stay in business; • local authorities making unenviable choices about where to make reductions; • a complex set of causes of delays in discharging older people from hospital; • voluntary sector keeping services going even when funding was curtailed. Nicola Bowtell
Transitional places: the revolving doors of the care system • • 30 older adults with lung cancer, • stroke or heart failure: 67 moves in • the 3 months before interview 1 • • Important care decisions • transferred at the same time as • patients • • Crisis care, rather than anticipatory • care the norm • 1. Hanratty et al Older adults experiences of transitions between care settings at the end of life in England – A • qualitative interview study. Journal of Pain and Symptom Management, In press. Nicola Bowtell
Places: hospitals • • A 2010 census of hospital patients in Lancaster and • Sheffield shows that a third of patients have palliative • care needs (according to GSF criteria) • • Patients with palliative care needs are overwhelmingly • frail, older people, with multiple co-morbidities and • multiple previous admissions to hospital • Gardiner at al Nicola Bowtell
Delayed transfer of care: total number of days delayed each month Nicola Bowtell
Number and percentage of Deaths in Care Homes, England 2005 - 2014 • 22% of deaths (101,203) occurred in a care home in 2014, up from 16% (76,997) in 2005 • A third (34%) of these deaths are temporary residents • Temporary in comparison to permanent resident deaths are: • more likely to have died from cancer • on average younger • more likely to be male National End of Life Care Intelligence Network
Key findings for those who die in care homes • Over 20% of deaths in England are permanent care home residents. (2014) 1 in 5 people are living in a care home prior to death • 70% of care home residents die in a care home. • The most common cause of death among care residents is dementia or Alzheimer’s disease. National End of Life Care Intelligence Network
Number and percentage of deaths of care home residents, England 2005-2014 National End of Life Care Intelligence Network
VOICES Survey 2014 – Right PoD? Hospice23 Annual National Conference 17102015
VOICES Survey 2014 – Overall Quality of Care Hospice23 Annual National Conference 17102015
Complete pain relief (SCN area team max, England, SCN area team min) SW_EOLC_data_201407_Expert reference group presentation
VOICES Survey 2014 Pain relieved completely some/all timeHospice (88.2%) Care homes (73.3%) Hospital (68.4%) Home (49.2%) Hospice23 Annual National Conference 17102015
Identifying dementia in mortality records • Underlying cause of death. ONS – Underlying cause of death, dementia plus Alzheimer’s disease (ICD10 F01, F03, G30) • PHE (MHNDIN) chose a wider definition looking at underlying and contributory cause of death (ICD10 F01, F02, F03, F04, G30, G31) • Neither of these include senility (R54) which has previously been included by NEoLCIN • The following charts present the underlying cause of death estimate and the broad any mention of mention, Alzheimer’s disease or senility Presentation title - edit in Header and Footer
Deaths aged 75 years and older, England 2013-2015 Percentage figure is those deaths with no mention of dementia or senility Presentation title - edit in Header and Footer
Place of death for those with any mention of dementia or senility as a cause of death aged 75 years and older, England 2013-2015 (108,400 p.a. ~ ¼ of all deaths c.f. cancer) Figures are average annual deaths, and percentage of deaths by place Presentation title - edit in Header and Footer
Variation, Variation…. Need, service, outcome
http://www.rightcare.nhs.uk/index.php/atlas/nhs-atlas-of-variation-in-healthcare-2015/http://www.rightcare.nhs.uk/index.php/atlas/nhs-atlas-of-variation-in-healthcare-2015/
Proportion of population aged >85 years 2012 Nicola Bowtell
% of pensioners who live alone, 2011 Nicola Bowtell
Where people aged 85+ years die in England Hospital 45.6% ↓ Care home 36.7% ↑ Home 14.8% ↓ Hospice 1.92% ↓ Nicola Bowtell