Context
of End of Life and GSF in the UK
End of Life Care (EOLC) in the UK
With an aging population and increasing numbers of people living longer, there is growing recognition that all society is involved in the care for people nearing the end of life.
In the UK policy terms, end of life care is defined as including all people in the last year/s of life, or more broadly the last phase of life, not just the final days. (See below NICE or GMC Definition of End of Life Care here )
This group of people is estimated in the UK to be about;
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1% of the population, i.e. about 650,000/ year
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30% hospital patients and
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80% care homes residents (approximately)
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Increasing numbers of deaths are predicted of 25% by 2040, and the excess deaths from the COVID 19 pandemic might increase this number further.
Some estimate care for people in the last year of life costs the NHS a third of its budget- and some of this is not spent wisely, or in line with peoples’ preferences.
Mobilising the UK workforce
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Specialist pall care /hospice - about 8,000
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Generalists providing care - about 3 million
Population-based End of Life Care
There is growing discussion in the UK about taking a wider, population-based view of end of life care. Unlike other areas of medicine, death will affect us all, and at any time- this isn’t something that can or should be confined just to specialists. We need everyone to be involved and play their part;
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both 'generalists' and specialist
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community and hospital teams
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clinical and non-clinical
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medical and spiritual
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across all health and social care settings
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This ‘generalist’ workforce caring for people in the last years of life totals about 3 million , about 1.2m in NHS healthcare and 1.8 in social care, with almost 700,000 people dying every year in the UK in normal times. Along with family and carers, they will provide the vast majority of care for people across every setting in the final years of life.
So mobilising , training and enabling this generalist workforce is crucial for provision of top quality care across the whole population. This became even more apparent in the COVID pandemic .There has never been a greater need for such training and upskilling of more people as now.
UK's Definition of End of Life Care- final year/s of life
NICE 2019 Guidance on End of Life Care Service Delivery see here , GMC Guidance definition here
End of life care includes the care and support given in the final weeks and months of life, and the planning and preparation for this. For some conditions, this could be months or years. This includes people with:
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• advanced, progressive, incurable conditions
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• general frailty and coexisting conditions that mean they are at increased risk of dying within the next 12 months
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• existing conditions if they are at risk of dying from a sudden acute crisis in their condition
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• life-threatening acute conditions caused by sudden catastrophic events.
Enabling Generalists
The UK is internationally recognised as having one of the best palliative care and hospices workforces in the world (International Quality of Death Index, Economist 2015).
This wonderful yet small workforce of specialists in the UK (estimated at about 8,000 staff) provides expert specialist care and support for many people, and centres of excellence in the skills and delivery of palliative and end of life care.
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Yet most care is in fact given by peoples’ usual care providers, namely their GPs, community nurses, hospitals, care homes, domiciliary care providers, etc. And although many wish to die in a hospice, most would still prefer to die at home.
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It is this group of people that we at GSF focus on, teaching them basic generalist skills of early recognition, personalised care and prevention of crises, enhancing their confidence and releasing the talents of many thousands of teams across the UK.
"End of life care is everybody's business"
'Big Picture' End of Life Care
both Population-based and Person-centred
End of Life Care for all Conditions
Initially much palliative care was cancer -focussed, but GPs were aware of the many people dying with non-cancer conditions that needed extra support. This inequity was highlighted by one patient who said "Do I have to have cancer to get this kind of care?".
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There was a gradual shift towards including more patients with organ failure and frailty, dementia and multi-morbidities, greatly enhanced by the development of the recognition of Frailty as a condition and use of the Electronic Frailty Index.
Widening the scope of conditions also meant that the different ways of dying needed to be taken into account. These could be broadly classified into four main categories based on their typical trajectories (Lynn et al).
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Of a GP's caseload of about 2,000 patients, there may be about 20 deaths / GP on average each year.
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About a quarter of these would die of cancer, usually with a fairly predictable decline in the final stage; the typical patient needing palliative care specialist skills,
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a few more will die of organ failure, (heart disease COPD, renal failure etc) with a more erratic trajectory,
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but about a third, mainly elderly with a combination of frailty, dementia and multi-morbidities have a more gradual extended decline and unpredictable course.
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A few die suddenly of unexpected causes (eg. suicide, accident, infection etc) and stroke can mimic several.
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COVID-19 was exceptional however, with older age and underlying co-morbidity key determinants, and for some the final decline was very rapid, whilst others prolonged .
Who provides care for people in their final years ?
The simple answer is – everyone! We believe that ‘end of life care is everybody’s business’ and everyone has a role to play. See recent Dying Matters article here
"Our vision is of a health and social care workforce confident and able to provide the right support to people, their families and carers, as they approach the final stage of life."
Keri Thomas Dying Matters March 2021
"Do I have to have cancer to get this kind of care?"
See BJGP Editorial on Population-based, Person-centred End of Life Care ' Thomas K Gray M 2018
A new approach to Population-based End of Life Care
Previous Understanding
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Population - Referred
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Setting - Hospice & Care Homes
Condition - Cancer
Stage - Final days of life
Providers - Specialists
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New Understanding
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Population - Whole population in an area
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All Settings - Home, Care Homes, Hospitals, other...
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Condition - includes non-cancer; frailty, dementia...
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Stage - Final years of life
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Providers - Generalists; everyone's involved
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Different Levels of Change & Outcome Measures
In order to have measurable impact, it is important to recognise the different levels of change or influence and different outcomes and measurables;
Individual
The Patient, family, or care-provider
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Outcomes: Person-centred Care, Goal-concordant care, family satisfaction, more dying where they choose, staff confidence
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Organisation or team
GP Practice team, home, ward, hospital, agency
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Outcomes; Proactive Care, early identification, team coordination, GSF system change embedded
Community
Locality, population area
Outcomes: Cross boundary communication, well coordinated care, reduced hospitalisation & crises, effective use of resources, EOLC metrics progress
National
Strategy, policy, quality standards, regulation
Outcomes: Influence strategy, mainstreamed in policy, NICE guidance and regulation, national metrics improving
Each level plays a crucial role in the interdependent, complex system of care, but for many patients it is the team at the bedside that really matters.
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There are specific measures and metrics for each of these. interdependent areas, focussed on specified outcomes,
which together can build towards transformation of the .whole system.
Enabling generalists
GSF focusses mainly on levels 2 and 3 , organisations, teams and the wider community , but also it impacts on levels 1 and 4, individuals and national perspectives.
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It is clear that enabling generalists to upskill the relevant palliative and end of life care skills is vital, especially now with the devastating effects of the global COVID pandemic.
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It is from this context that GSF was developed, to provide end-of-life care that is;
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For all people
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With any condition
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In any setting
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Given by any care provider
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At any time in their last years of life
Further Reading
To read the BJGP Editorial 'Population-based, Person-centred End of Life Care' Thomas K Gray M, click here
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