Measuring what’s important in End of Life Care

1. Measuring what’s important in End of Life Care Professor Julia Verne Head of Clinical Epidemiology. End of Life Care Lead Public Health England

2. Somerset

4. Better understanding End of life Intelligence Network (PHOs, charities, researchers, key users) Better commissioning Raising profile Research Improved measurement monitoring

5. 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

6. What we know Who are the people who die?

7. Numbers and Percentages of deaths in England , 1963 and 2014 Source: NEoLCIN ; PHDS, derived from ONS Mortality National End of Life Care Intelligence Network

8. 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

9. 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

10. 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

11. 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

12. How do people die?Changing patterns of death in older populations

13. Cause of death (trend) Hospice23 Annual National Conference 17102015

14. 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

15. 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

16. Trend of death due to pelvic cancer with age, number of deaths per year, 2004 to 2013 Source: ONS Mortality Data

17. How do we care for people?What do people want?What can we measure?

18. Which of the following would be most important to you regarding how you spend your final days? Hospice23 Annual National Conference 17102015

19. Place of death

20. Distribution of place of death in England, 2013 and 2004 Nicola Bowtell

21. Place of death by age (all causes)

22. Exploring some of the main factors associated with place of death for older people

23. Factors associated with place of death Nicola Bowtell

24. Older persons living arrangements Nicola Bowtell

25. Older persons health and caring Nicola Bowtell

26. Older people and living alone: % of usually resident population living alone by age group, 2011 Nicola Bowtell

27. 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

28. 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

29. 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

30. 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

31. Delayed transfer of care: total number of days delayed each month Nicola Bowtell

32. Deaths in Care homes(Transfers in to die)

33. 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

34. Deaths in Care Homes (Transfers out to die)

35. 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

36. Number and percentage of deaths of care home residents, England 2005-2014 National End of Life Care Intelligence Network

37. What else do we know about Quality of Care?

38. VOICES Survey 2014 – Right PoD? Hospice23 Annual National Conference 17102015

39. VOICES Survey 2014 – Overall Quality of Care Hospice23 Annual National Conference 17102015

40. Complete pain relief (SCN area team max, England, SCN area team min) SW_EOLC_data_201407_Expert reference group presentation

41. 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

42. Respecting Peoples wishesThe challenge of Mental Capacity

43. 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

44. 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

45. 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

46. Variation, Variation…. Need, service, outcome

47. 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/

48. Proportion of population aged >85 years 2012 Nicola Bowtell

49. % of pensioners who live alone, 2011 Nicola Bowtell

50. Where people aged 85+ years die in England Hospital 45.6% ↓ Care home 36.7% ↑ Home 14.8% ↓ Hospice 1.92% ↓ Nicola Bowtell