End of Life Care Strategy
The importance of planning for the ageing of mortality as well as improving the quality of care for dying patients was recognised in the End of Life Care Strategy published in 2008.
Concerns had been raised about the variable quality of end of life care for different patient groups and in different regions of the UK.
A Health Commission review (2006) found that 54% of complaints about care in acute hospitals related to death and dying or lack of support for bereaved relatives.
More recent evidence indicates that patients with dementia are more likely to have a longer stay in hospital and are more likely to die there than patients without dementia.
(Sampson, 2006; Alzheimer’s Society, 2009; Dening, 2012)
The Care Quality Commission (CQC) warns that the health and social care system is struggling to provide good care for people with dementia (2013).
Hospital as a place of death
Regardless of public preferences, and even although home is thought to be usually the preferred place of death, the reality is that hospital is the most common place for people to die and this is likely to remain the case in the foreseeable future. The End of Life Care Strategy acknowledges this, and calls for a change in the current culture of care throughout the NHS.
53% of the 450,000 people who die in England each year do so in hospital. 21% of deaths occur at home, 18% in care homes, 5% in hospices and 3% elsewhere.
Local preferences and place of death in regions within England 2011, Gomes, Calanzani, Higginson, 2011.
It has proved difficult to transfer the principles of palliative care to patients dying in busy acute hospital wards. A collaboration between the National End of Life Care Programme and the NHS Institute for Innovation and Improvement has developed the Transform Programme to improve care of the dying in the acute hospital setting.
The Transform Programme was established in 2011 and has been trialled in a number of NHS hospital trusts throughout England. The programme aims to support local services to adapt a structured framework for improving end of life care, based on implementation of 5 key enablers:
The cost of dying in hospital
Current policy aims to reduce the length of stay and also the number of unscheduled admissions for patients who may be close to death and unable to benefit from hospital treatment.
This is an important part of the End of Life Care Strategy commitment to enabling patients to die in their preferred place, which is widely reported to be their home or usual place of residence.
Another reason for trying to reduce the number of deaths in hospital is to contain costs.
- If current trends continue, 65% of deaths will occur in hospital by 2030.
- Patients dying in England average 2.1 hospital admissions in their last year of life.
- Typically towards the end of life each unplanned admission to hospital costs around £3000.
- A recent study by the National Audit Office found that 40% of patients who died in hospital had no medical need or reason to remain there.
DEMOS estimates that the NHS currently spends £20 billion on providing beds for dying patients, and that this figure will rise to £30 billion by 2030. Regardless of patient and family preferences, it is easy to understand the pressure within the NHS to support dying patients in their homes, rather than hospital.
Dying in hospital
As well as being considered the least preferred and most costly place to die, hospitals are widely considered to provide poor end of life care for dying patients, especially those who have dementia.
These issues are considered further in the RLO ‘Every death is different’. This uses data from a recent study of end of life care on acute hospital wards, and compares the experience of patients who had dementia with those who did not.
|Advance Care Planning (ACP)||The process of discussion between patients affected by terminal and life limiting illness, their family members and health professionals, about treatment options and future plans for care.|
|Alzheimer’s Society||Support for anyone affected by dementia.|
|Amber Care Bundle Pathway||Pathway developed to aid decision making and care management.|
|Caring for frail older people (CFFOP) research project page||Frail older people (including those with dementia) and their families.|
|Common Core Competences in End of Life Care||Frail older people (including those with dementia) and their families.|
|End of Life Care Strategy, 2008||Patient choice and involvement in decision making.|
|EPAC||End of life care pathway.|