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Meeting the challenge of quality End-of-Life Care in Care Homes The role of Care Homes in Palliative & End of Life Care Professor Malcolm Johnson

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Centre for Death and Society Department of Social and Policy Sciences University of Bath [email protected]

BRITISH GERIATRICS SOCIETY SPRING MEETING LIVERPOOL, MAY 11-13, 2016

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Public Health England: Project Brief

The aim of this project is to assess the role of care homes for people and their families at the end of life. identify examples of best practice and innovative models of care, +explore how health and social services engage with care homes and support residents.

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The project will explore patterns of care delivery and integration of care with NHS and social services, and incentives for place of care including NHS Continuing Healthcare Fast Track funding and rapid discharge home to die.

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It will also consider care home staff competences for supporting people and their families at end of life. It will look at availability and access to training.

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Bringing together national leads with expertise and knowledge about care homes, social care and end of life care to explore current knowledge about deaths and care and patterns of care for people that die in care homes.

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The project will incorporate the data analysis being carried out by the NEoLCIN analyst team to describe the deaths in care homes and the recent trends using 2003-2013 national data.

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Death in the Province of Old Age

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For the first time in human history the overwhelming majority of deaths are of ‘older’ people.

 Older people have been living and dying in Care Homes for many decades. But as

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life expectancy has extended and those who live longer lives do so largely in functional good health for much longer, the demography and epidemiology of dying and death have changed dramatically. Premature deaths are greatly reduced to the point where 84% of deaths in England in 2013 were people 65+.

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75% of all deaths are of people over 75, 39% were 85+.

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All too many of those individuals (48%) end their lives, unsatisfactorily and at considerable public cost, in hospitals. A further 22% die at home and 6% in hospice care.

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One in four (non accidental) deaths are in Care Homes

 The proportion who die in Care Homes has risen from 16% in 2004 to 22% in

2013 (NEoLIC).

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From 78,867 to 101,991 deaths.

 This is in part due to the later age and health status of entering Care Home

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residents (average age circa 89 years) and notably to the expansion in the numbers of ‘temporary residents’, who are placed in Homes in the diagnosed expectation of imminent death.

 As Palliative and End of life Care (EoLC) only applies to those known to be dying,

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it is important to exclude the annual 8% of deaths from accidents.

 Using this reduced base of deaths; those which take place in Care Homes

are just short of 25% of all deaths and for the over 85’s it is 36.7%

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PHE Project Brief

 So my Brief and my questions are not to query whether there is an End of Life

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(EoL) role for Care Homes, but to seek opinions about the character, dimensions and costs of an expanding provision.

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 What are the strengths, benefits and weaknesses of EoL care in Care Homes?

Should this provision be extended as part of the policy to reduce hospital deaths and mitigate the associated costs?

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What are the organisational and financial barriers? How can the quality of experience of dying be improved so that all Homes are as good as the best?

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Trends in deaths in England 1995-2013

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Concentration of deaths in old age

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Nicola Bowtell PHE

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84% of deaths were of people aged 65 + 39% were of people aged 85+ Almost half of women dying (48%) were age 85 + Will be rising in the early 2020s

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Where people aged 85+ years die in England

Hospital 45.6% ↓

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Hospice 1.92% ↓

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Care home 36.7% ↑

Nicola Bowtell PHE

Home 14.8% ↓

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The growth of temporary residents in Care Homes

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 The number of ‘temporary residents’, (who are transferred, principally from

hospitals ) to die in Care Homes, has grown.  Over the period from 2004 to 2013 the numbers increased by 24.3%.

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 With the considerable pressure on hospitals to release beds, the rise in

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transfers of dying patients to (principally) Nursing Homes continues to escalate.

 In 2013 deaths of temporary residents accounted for 34.1% of all care home

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deaths (34,798)  Temporary residents are typically younger (4 years younger) than established residents. More of them are male.

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 The causes of death are markedly different.

Temporary residents : 32% cancer Established residents : 10.8% cancer Data supplied by Andy Pring, PHE

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The Care Homes sector

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end of 2014. Of these, 182,000 residential and nursing home beds were in corporate owned care homes (39% of the total) . The remaining 60% are sole proprietor homes, members of small groups or larger clusters of charitable/not for profit organisations In September 2014 there were some 11,673 independent (for-profit plus notfor-profit) care homes. So the Care Homes sector is a mixture of large for profit companies (eg Four Seasons, HC-One, Barchester, CareUK) and large Charitable (eg Anchor and MHA /Methodist homes, Order of St John, Sanctuary) and not-for-divided companies such as Bupa. Inevitably there is considerable variation in quality and capacity for training across so diverse a set of providers. Though excellence can be seen in one-off homes and small groups as well as in the bigger organizations.

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 CQC report there were around 465,000 beds in registered Care Homes at the

(derived from Laing & Buisson, 2015 data)

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Death in Old Age is Different

 Amongst the expanding battalions of survivors in their tenth decade, men

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lose out to the extent that there are six women for every man. As a consequence when we look for the oldest old, where one in three will find themselves in a residential or nursing home , where the average age is 90. Residents of such establishments are overwhelmingly female.

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 Death in old age is, in general harder on women.

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It has also become a correlate of late life widowhood and living alone. This might be the major loss, but entry into the Fourth Age of dependency may also mean a marked deterioration of physical health, probably resulting in loss of mobility. Other common losses include loss of visual acuity, decline in hearing and for around 40% troubling memory loss or dementia.

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Top 5 leading causes of death for ages 80 and over, 2014

Nicola Bowtell PHE

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Dying Trajectories and Care

 Lynn & Adamson in the US having analysed huge Medicare datasets, have

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concluded that “One useful way of envisioning care for elderly people who are sick enough to die, follows from classifying them into three groups; using the trajectory of decline over time that is characteristic of each major type of disease or disability.

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 Each trajectory corresponds to a different rhythm and set of priorities in care.

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Differing pathways

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Trajectory One

 Short period of evident decline—typical of cancer.

Trajectory Two

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Most patients with malignancies maintain comfort and functioning for a substantial period. However, once the illness becomes overwhelming, the patient’s status usually declines quite rapidly in the final weeks and days preceding death.

 Long-term limitations with intermittent exacerbations and sudden

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dying—typical of organ system failure. Stress overwhelms the body’s reserves and leads to a worsening of serious symptoms. Patients survive a few such episodes Patients in this category often live for a relatively long time and may have only minor limitations in everyday life. But then die from a complication or exacerbation, often rather suddenly.

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Differing Pathways Trajectory Three

 Prolonged dwindling—typical of dementia, disabling stroke, and

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frailty. Those who escape cancer and organ system failure are likely to die at older ages of either neurological failure (such as Alzheimer’s or other dementia) or generalized frailty of multiple body systems. ******

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The group we now term FRAILTY This is the growing group of older people whose dying is protracted and challenging for family carers and home care services alike.  Characterised by: Multiple co-morbidities; non-curable conditions of insidious onset.

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What do EoL/Palliative Care workers need to do?

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their knowledge and practice. Be mindful that in later old age cancer is far from being a principal cause of death and cancer/hospice derived care models are not benchmark standards. Understand why death in old age is different from dying in childhood or in mainstream adulthood. Be empathetic to those whose dying is slow painful and undignified and be ready to talk about the wish for assisted dying. Be more closely attuned to the spiritual needs that come with finitude in old age. Accept that older people are almost all ready and willing to talk about dying and death – they think about it a great deal. Remember they have lived a long time and will not be impressed by groundless optimism or false hope.

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 Recognise that death is now in the province of old age and to gerontologise

KINDNESS and understanding of individual wishes are paramount

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EoL Practices in Care Homes

As the great majority of residents who are dying have been in a home for many months, there is in practice rarely a critical point where the care process shifts noticeably into end of life mode.  Staff, when asked what they do when someone is ‘on the last lap’ typically say ‘we just carry on caring for them as we always have, making adjustments as we go’. This standard reaction has been verified in the author’s latest national study of end of life care in care homes.  Such sound common sense care regimes are more convincing than the manufactured End of Life Care Pathways advocated by the Dept of Health Strategy (Department of Health, 2008, p49).  It is common for academic investigators of care settings to recommend a battery of procedures to upskill the staff. No doubt more training and knowledge could serve to improve general standards in care homes.

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But in respect of end of life care there seems little requirement for extended training. Helping staff to know what within the stock of life experience is most appropriate and when to use it, is likely to preserve a valuable and scarcely noticed set of embedded values and gifts of human caring.

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Who are the partners of Care Homes in EoL care?

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 GPs  Community Nurses  Palliative Care Nurses

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 Social Workers

 Hospitals (emergency admissions and discharges)

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 Hospices (clinical support and training)  Adult Social Services  CCGs  Geriatricians?

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Where is the active contribution of the long established guardians of humane and intelligent medical care for older people? With a few notable exceptions, clinicians and the BGS have been all but silent.  WHY?

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CQC Latest Report

Just published, by the Care Quality Commission: 'A different ending': Our review of end of life care The Review found:

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Some commissioners and providers might not be fulfilling their duties under the Equality Act 2010 as all public bodies have a legal duty to consider the needs of a range of equality groups when carrying out their day-to-day work.

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Health and care staff are not always having conversations with people early enough about their end of life care. This means they don’t have the opportunity to make plans and choices with their loved-ones about how and where they would prefer to die.

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The CQC identified examples of good practice, but found that action is needed to make sure everyone has the same access to high quality, personalised care at the end of their lives, regardless of their diagnosis, age, ethnic background, sexual orientation, gender identity, disability or social circumstances.

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Partnership and problem solving can work

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 Care Homes have deep experience of caring to the End of Life.

 But they need the help of health care professionals when there is complexity

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and appropriately modified training such as the Gold Standards Framework.  The recent explosion of Reports is unanimous that Care Homes need more

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training and learning from, Palliative Care and Hospices. And that is true – to a degree.

 But these same ‘experts’ are over confident in their superiority. Both the

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Leaders and the practitioners are woefully out of touch with the Care Homes which nurture the older people they never see, to the end of their lives.

 In all the Reports, I have yet to see the humility to recognise that Hospices

have a great deal to learn from Care Homes about dying well in old age.