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

Somerset

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

What we know Who are the people who die?

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” Ageing of the UK population is projected to continue. By 2035, it is projected that the median age will have risen to 42.2 years, an increase of 2.5 years in the quarter century after 2010. During the last century, there were peaks in the numbers of births after both world wars and a longer baby boom during the 1960s. Over the next 25 years people born just after World War II, now aged in their 60s, will continue into the oldest ages, reaching their late 80s by 2035. The 1960s ‘baby boomers’ currently in their mid 40s, will reach their early 60s around 2025 and by 2035 will be in their early 70s. As these birth cohorts age they will contribute to the continuing ageing of the UK population. In terms of increases in the number and proportion of older people in the UK population, the percentage of persons aged 65 and over increased from 15 per cent in 1985 to 17 per cent in 2010, an increase of 1.7 million people. By 2035 it is projected that those aged 65 and over will account for 23 per cent of the total population. Percentage of older people in the UK 1985 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

Source: ONS Mortality Data 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

Place of death

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

Place of death by age (all causes)

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. An elderly patient with advanced dementia and Parkinson’s disease was sent to the emergency department from a nursing home on a Friday evening. The patient was unconscious and an ECG showed acute myocardial ischaemia. • The patient’s wife had requested that the patient should not have active treatment but the home care staff called the GP in a panic when his condition deteriorated. • The GP had never met the patient and sent him to hospital. Little information was provided. A middle ranking doctor in accident and emergency called a consultant. They struggled to work out what best to do. • Eventually, an end of life pathway was started. The patient died in emergency admissions shortly afterwards 2. 1.Bailey, C et al (2011) Trajectories of End-of-Life Care in the Emergency Department. Annals of Emergency Medicine, 57(4):362-9 ; 2.Based on a case in: National Confidential Enquiry into Patient Outcome and Death (2009) Caring to the End? A review of the care of patients who died in hospital within four days of admission. NCEPOD. 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

Deaths in Care homes (Transfers in to die)

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

Deaths in Care Homes (Transfers out to die)

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

What else do we know about Quality of Care?

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) 1. National findings: Pain is relieved most effectively in the hospice setting (62%) and least effectively at home (18%). 2. NHS Area Team findings- by care setting: Relief of pain is managed least well at Home and this is more geographically consistent than any other aspect of care assessed. Relief of pain is managed more effectively in Care Homes than in Hospitals. In almost half of cases (45%) pain is managed ‘completely, all of the time’ in Care Homes compared to 37% in Hospitals. NB Variation is much greater below NHS Area Team level. SW_EOLC_data_201407_Expert reference group presentation

VOICES Survey 2014 Pain relieved completely some/all time Hospice (88 VOICES Survey 2014 Pain relieved completely some/all time Hospice (88.2%) Care homes (73.3%) Hospital (68.4%) Home (49.2%) Hospice23 Annual National Conference 17102015

Respecting Peoples wishes The challenge of Mental Capacity

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 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% ↑ Hospice 1.92% ↓ Home 14.8% ↓ Top = hospital = care home Hospice and own home Nicola Bowtell

Dementia and place of death in older persons Dementia: Recorded prevalence in 65+ years Death in usual residence: people with dementia in 65+ years England 66.6% Highest 83.4% Lowest 25.0% England 4.25% Highest 5.69% Lowest 3.04% Nicola Bowtell

Proportion of care home deaths who are temporary residents by local authority, England, 2012-2014 National End of Life Care Intelligence Network

Care home residents who die in a care home, by local authority, England 2012-2014 National End of Life Care Intelligence Network

End of Life Care Profile - Bristol

What we know now reports

Clinical Epidemiology Webinar Series The NEoLCIN focus on care homes webinar 24 November 2-3 pm Presentation title - edit in Header and Footer