1 The current place and quality of
end of life care|
1. End of life care services aim to support those
with advanced, progressive, incurable illness to live as well
as possible until they die. In England, approximately half a million
people die each year, almost two-thirds of whom are aged over
75 years. Around three quarters of deaths are 'predictable' and
follow a period of chronic illness, such as cancer or heart disease,
where people may need access to end of life care.
2. The majority of people (between 56% and 74%) express
a preference to be cared for and die in their own home, which
for some will be a care home, and to avoid dying in an acute hospital.
The proportion of people expressing a preference to die at home
has, however, been shown to change as death approaches. This can
be because they require more extensive support, such as that provided
by a hospice, and do not wish to be a burden to their family,
or because they do not wish to die alone. Many people are admitted
to hospital for emergency treatment of symptom management and,
for some, hospital is their preferred place of care. Some people,
however, remain on a medical or surgical ward when they no longer
have a clinical need to be there. For those whose preference is
not to return home or for whom home care is no longer feasible,
an alternative is intermediate care, provided for example by a
community hospital. Research evidence shows that people are generally
very satisfied with the end of life care they receive in community
3. In 2006, only 35% of people died at home or in
a care home and 58% of deaths occurred in an acute hospital, ranging
from 46% to 77% across Primary Care Trusts.
Place of death varies by age, with care home death rates highest
for those over 85. There
is also considerable variation by condition, with cancer patients
more likely to die at home or in a hospice (Figure 1).
The Department for Health (the Department) attributes this largely
to the fact that specialist palliative care services and the modern
hospice movement, started by Dame Cicely Saunders 40 years ago,
has traditionally focused on cancer. More recently, however, there
has been an increase in the proportion of patients accessing specialist
palliative care services who have other conditions, such as renal
4. Although the Department consulted a range of different
representative groups to establish the impact of cultural factors
on preferences for end of life care during the development its
end of life care strategy, it found relatively few such cultural
differences in people's preferences as they approach death. There
are, however, considerable differences in how people or their
relatives expect to be cared for immediately thereafter and the
Department acknowledged the importance of observing these differences
and meeting the needs of patients and their families.
Figure 1: Place of death varies by condition
Source: National Audit Office analysis of 2006
Mortality Statistics for England
5. As people approach the end of their life, they
often require a complex mix of health and social care services.
Co-ordination between health and social care services in relation
to the planning, delivery and monitoring of end of life care is,
however, generally poor and people approaching the end of their
life often encounter problems, particularly when they are being
transferred between health and social care providers. For example,
residential homes, especially those without qualified nursing
staff, often feel ill-equipped to care for people as they near
the final stages of life and end up sending them to hospital or
refuse to take residents back after a hospital admission, for
example, if the patient is no longer weight-bearing.
6. Current processes for securing home care in the
community lack efficiency and flexibility, and there can be delays
and difficulties in obtaining and completing the necessary forms
at a time when people may have only days or weeks to live.
A lack of care planning and prompt access to services in the community
can lead to some people approaching the end of their life being
unnecessarily admitted to an acute hospital or to delays to the
discharge of people who have no medical need to remain in hospital.
Information on patient preferences is also not always captured
or shared effectively between the different agencies involved
in delivering care.
The Department acknowledged that end of life care requires good
organisation and strategic planning, and for Primary Care Trusts
and local authorities and also the voluntary sector to work together
in partnership, but that in many cases this has not been happening.
7. Work carried out by the Healthcare Commission
has identified that those people who die in acute hospitals are
not always afforded the dignity and respect they deserve. Common
issues include poor support for basic comfort; a lack of privacy
for the patient and their family; poor communication by staff;
and staff recognising too late that somebody is at the end of
their life. Focus groups carried out for the National Audit Office
identified examples where the standard of hospital care was below
what had been expected, causing unnecessary stress for people
approaching the end of their life and for those caring for them.
8. The Department acknowledged the need to improve
the standard of acute hospital care for people at the end of their
life, but emphasised that it is possible for those who want, or
have a medical need, to be in hospital at the end of their life
to have a good death.
It is seeking to improve the standard of acute hospital care for
people at the end of their life by continuing to encourage uptake
of the Liverpool Care Pathway tool.
It is also promoting the development of specialist palliative
care teams, and taking forward work to redevelop the hospital
environment and improve patient privacy.
9. The Department welcomed the findings of a review
of patient records in Sheffield carried out for the National Audit
Office, which explored the potential for changes in care pathways
for people at the end of life and the alternatives to patients
dying in hospital.
The review found that the proportion of deaths in acute hospital
could have been reduced from 50% to 31%, with a corresponding
increase in deaths in other settings (Figure 2). It also
found that the proportion of residents dying in care homes could
have been increased from 61% to 80% if more support and advice
had been provided to those homes.
10. Reducing unnecessary use of acute hospitals by
people at the end of their life could make additional resources
available for expenditure on end of life care. At least 40% of
people who died in an acute hospital in the Sheffield in October
2007 did not have medical needs which required them to be admitted.
These patients used 1,500 bed days, costing approximately £375,000,
with nearly a quarter of them having been in hospital for over
a month. Over the course of a full year, this could make around
£4.5 million available for investment in community services.
11. Economic modelling work by the National Audit
Office estimates that, nationally, the cost of caring for cancer
patients (who account for 27% of all deaths) in the 12 months
prior to death was £1.8 billion and that a 10% reduction
in the number of emergency admissions and a reduction of the average
length of stay per admission of three days, would release £104
million for redistribution to other end of life care services.
Figure 2: Potential to increase the number of
people who die outside of acute hospital
Source: Analysis by the Balance of Care Group
on behalf of the National Audit Office
12. Work carried out by Marie Curie through its Delivering
Choice Programme demonstrates that reductions of this kind are
possible if appropriate community services for end of life care
are put in place. For example, in Lincolnshire, the Programme
helped avoid 500 admissions in a year, it showed that investment
in community services can decrease the number of hospital deaths
and reduce the number of admissions to hospital per patient as
they approach the end of their life.
The Delivering Choice Programme is one of a number of examples
of the modern hospice movement and the voluntary sector working
with NHS and social care services to improve services in the community
for people approaching the end of their life.
2 C&AG's Report, para 1.1 Back
Qq 4, 8, 40; C&AG's Report, para 2.3 Back
Qq 4, 8, 37-40; C&AG's Report, para 2.3 Back
Q 4; C&AG's Report, paras 2.3-2.4; Figure 3 Back
C&AG's Report, para 2.2 Back
Q 11 Back
Qq 61, 76 Back
Q 63 Back
Qq 40, 65; C&AG's Report, para 18 Back
Qq 69-71 Back
Qq 4, 105-106 Back
C&AG's Report, para 9 Back
Qq 23, 65 Back
Q 10; C&AG's Report, paras 12, 2.8 Back
Qq 4, 38 Back
The Liverpool Care Pathway is one of three tools recommended by
the National Institute of Clinical Excellence to improve delivery
of end of life care. The other two tools are the Gold Standard
Framework and the Preferred Priorities of Care. Back
Q 10 Back
Qq 8-9; C&AG's Report; Appendix 2 Back
Q 40; C&AG's Report, paras 3.12-3.13; Figures 14-15 Back
Qq 8-9; C&AG's Report, para 3.14 Back
Qq 5, 107; C&AG's Report, paras 3.23-3.27; Appendix 3; Figures
Qq 4, 107-109; C&AG's Report, Appendix 6; Example 5 Back
Qq 4, 65 Back