Enabling a gold standard of care for all people nearing the end of life

Why Is It Important?

Wherever someone eventually dies, most time will be spent at home in the final year of life, so providing best home care for the final stage of life will always be important. But there is currently a significant gap between preferred and actual place of death, with over half not dying where they would chose, too many dying in hospital and too few in their own home, care home or hospice.

End of Life Care in Numbers

1% of the population dies each year
17% increase in deaths from 2012
40% of deaths in hospital could have occurred elsewhere (National Audit Office report example)
60% people do not die where they choose
75% deaths are from non-cancer conditions
85% of deaths occur in people over 65
£19,000 non cancer, £14,000 cancer - average cost/patient in final year of life
2.5 million generalist workforce - 5,500 palliative care specialists.

Key Messages

End of Life Care is important. It affects us all
In 3 years the death rate will rise and demand soars.
Most die of non-cancer/co-morbidity in old age,
Too few die at home or in their place of choice
Hospital admissions and deaths are expensive and may be preventable - care must be brought closer to home
Everyone is involved in end of life care - most care is from the usual generalist provider
GFS helps improve the quality and co-ordination of care provided by generalists across different settings
About 90% of the final year of life is spent at home, so good home care is important no matter where the final place of death is.

A key goal of this work is to enable more to die where they choose, usually at home, or a care home or in a hospice, and reduce hospitalisations and the numbers who inappropriately die on acute hospital wards. But real choice and self determination is more than this, and also involves empowerment and enablement of people nearing the end of life, to help them understand choices and exercise some control over events. This means constantly listening to the patient and carers' needs and thoughts, helping them think ahead with the use of an Advance Care Planning discussions, organising and pre-planning care in response to these needs, and at all times treating them with due respect and dignity as they move along this important final journey.

The Demographic Time Bomb

Supportive and palliative care towards the end of life will be increasingly needed in future with predicted demographic changes - the ageing population is living longer with serious illness, with fewer people available to care for them¹. Current predictions point to a window of opportunity over the next 3 years before the death curve increases in 2012. Most care for patients at the end of life is provided by their usual generic or ‘generalists’ care provider (GP, District Nurse, staff in the care home or hospital etc) . Optimising primary and specialist services to enable full and complementary provision will maximise benefits for patients².

Enabling Generalists Diagram

Dying where you choose

The majority would prefer to die at home (with hospice as second choice), but only about 18% die at home and 17% in a care home, yet over 58% die in hospitals, despite a small minority choosing this. For many the place of death is by default rather than by choice, due to lack of planning or service provision, problems with symptom control or carer support^{3 4}.

The recent National Audit Office study (Nov 08) suggested that over 40% of patients who died in hospital in one study could have been cared for elsewhere. Hospital death is more likely for the poor, elderly, women, those with a long illness etc. There is a general drive to reduce hospital usage and increase community care in the UK - we are overusing our hospital beds compared with other countries⁵. Care Closer to Home is now both a preference for patients and an economic necessity⁶.

Discussion about preference for place of care makes it more likely to be attained, usually as part of an Advance Care Planning discussion .Such discussions can help patients and their families come to terms with the changing reality, to prepare and adjust appropriately, reducing the fear of the unexpected, and can be a key element in delivering the kind of quality care that is aspired to. However these are sometimes sensitive and difficult discussions, and staff may feel they need to develop their confidence in holding such discussions, and use one of the ACP tools, booklets, training and resources to help them - see Advance Care Planning.

By maximising the ability of the care team to work smarter using GSF, by improving communication with patients and their carers and by increasing provision of community care, more patients could be supported to die where they would choose, usually at home, and fewer to die in costly inappropriate hospital beds

References

¹ WHO Better Palliative Care for Older People Europe: World Health Organisation 2004
² Mitchell G (2002) How well do general practitioners deliver palliative care? A systematic review. Pall Med 16:457-64
³ Thorpe G (1993) Enabling more dying people to remain at home BMJ 307 915-8
⁴ Thomas C Morris SM Clark D Place of death: preferences among cancer patients and their carers Soc Science and Med 58 (2004) 2431-2444
⁵ Higginson IJ, Astin P Dolan S (1998) Where do cancer patients die? Ten year trend in the place of death of cancer patients in England Pall med 12:353-63
⁶ Delivering care closer to home: meeting the challenge
⁷ http://www.nice.org.uk/

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