1 Overview
1. Palliative and end of life care is provided to
people who have an incurable and progressive illness. Good quality
end of life care is seen as an essential component of modern health
care services and in recent years a number of initiatives have
been developed to improve the care people receive at this time.
2. There are many examples of good end of life care
being provided in different settings. However, the experience
that people approaching the end of life have varies and in too
many cases is unacceptably poor. Of particular concern is the
care that some people receive in acute hospitals, as has been
highlighted in evidence from a number of sources.
3. In its evidence to this inquiry the National Council
for Palliative Care remark:
"… successive governments have set
high aspirations, saying that the way we look after dying people
is a litmus test for health and care and should be core business
for the NHS. Despite that, there is still unacceptable variation,
which would not be tolerated in any other area of practice."[2]
4. Each year around 500,000 people die in England
and Wales. In 2013, approximately 80% of those who died were people
aged over 65.[3] One third
of all deaths are people aged 85 and over, but only 15% of those
who receive specialist palliative care are in this age group.[4]
5. The large majority of deaths follow a period of
chronic illness such as heart disease, cancer, stroke, chronic
respiratory disease, neurological disease or dementia. Most deaths
(53%) occur in NHS hospitals, with around 21% occurring at home,
18% in care homes, 5% in hospices and 3% elsewhere.[5]
This is despite the fact that 63% of people say that they would
prefer to die at home, while 29% would prefer to die in a hospice.
Hospital was found to be the least preferred place of death in
a study carried out by the Cicely Saunders Institute.[6]
Other sources put the figure for home as the preferred place of
death even higher: ComRes polling for the Dying Matters Coalition
in April 2014 showed that 72% of people would want to die at home.[7]
Macmillan Cancer Support cite evidence that shows that 85% of
people who die in hospital would have preferred to die in another
setting.[8] People do change
their minds however and the stated preferred place of death may
change as death approaches.[9]
6. The demographics of death in relation to age profile,
cause of death and place of death changed significantly during
the 20th century. In 1900 most people died in their own homes.
Acute infections were a much more common cause of death and a
far higher proportion of all deaths occurred in childhood or early
adult life. As a result of these changes, familiarity with death
within society as a whole has decreased. Many people nowadays
do not experience the death of someone close to them until they
are well into midlife. Many have not seen a dead body and as a
society we seldom discuss death and dying openly.[10]
Many people may lack the confidence to initiate discussions with
medical staff about what should or shouldn't be done when someone
is approaching the end of their life. [11]
7. Following a review of end of life care services
the Department of Health announced a new approach for those caring
for dying people in England. The approach focuses on achieving
Five Priorities for Care that should be applied whenever and wherever
someone is dying, whether in hospital, a hospice, their own home
or another location.
8. The Committee decided to examine the issues around
palliative and end of life care, focusing on how different care
sectors support people who are likely to die within 12 months,
what opportunities exist for improving care quality, and the experience
of those caring for people at the end of life.
9. The terminology which has grown up in this area
is poorly understood and lacks clarity. Terms such as end of life
care, palliative care, supportive care, specialist palliative
care, general palliative care, hospice care, etc. are not always
used clearly or consistently.[12]
The General Medical Council and the National Council for
Palliative Care say that people can be said to be 'approaching
the end of life' when they appear likely to die within the next
twelve months.[13],[14]
This is the definition the Committee has used for its inquiry.
10. The World Health Organisation's definition of
'palliative care' is "an approach that improves the quality
of life of patients and their families facing the problem associated
with life-threatening illness, through the prevention and relief
of suffering by means of early identification and impeccable assessment
and treatment of pain and other problems, physical, psychosocial
and spiritual."[15]
11. The National Council for Palliative Care (NCPC)'s
guidance to doctors defines 'end of life care' as care that helps
people with advanced, progressive, incurable illness to live as
well as possible until they die. It enables the supportive and
palliative care needs of both patient and family to be identified
and met throughout the last phase of life and into bereavement.
It includes management of pain and other symptoms and provision
of psychological, social, spiritual and practical support.[16]
In their written evidence, NCPC say:
We do note though that if end of life and palliative
care were better and more widely understood, then this might enable
better conversations between health and social care staff and
people about death and dying, as well as services that meet their
needs.[17]
12. Giving oral evidence to the inquiry, the Royal
College of Physicians and Royal College of Nursing commented that
end of life care is "everybody's business" in every
care setting; it is not provided solely by specialist staff.[18]
This view reiterates the National Institute for Health and Care
Excellence (NICE)'s Quality Standard on End of Life Care which
states that providing high quality end of life care and support
should be an integral part of every health and social care worker's
role.
13. People with more complex needs may require 'Specialist
Palliative Care Services' (SPC). SPC is the active, total care
of patients with progressive, advanced disease and their families.
Care is provided by a multi-professional team who have undergone
recognised specialist palliative care training. The aim of the
care is to provide physical, psychological, social and spiritual
support.[19]
14. It is worth noting that, while there is a continuing
debate about legalising euthanasia and assisted suicide, these
issues are outside the scope of this inquiry.
Beyond the Liverpool Care Pathway
15. The Government published its End of Life Care
Strategy in 2008, and commented:
Many consider death to be the last great taboo
in our society and … most of us find it hard to engage in
advance with the way in which we would like to be cared for at
the end of life.
16. The Strategy recognised that many people did
not have what could be described as a 'good death'—being
treated as an individual with dignity and respect, being without
pain and other symptoms, being in familiar surroundings, and being
in the company of close family and/or friends—and highlighted
a number of issues to improve the situation:
· Government
would work with the National Council for Palliative Care to raise
the profile of end of life care and to change attitudes to death
and dying in the wider society;
· there
was a need for an integrated approach to planning, contracting
and monitoring of service delivery across health and social care;
· all
health and social care staff should be trained in communication
for palliative care;
· end
of life care should be included in training for all staff at all
levels, to ensure that they have the necessary knowledge, skills
and attitudes needed to care for people who were dying;
· everyone
approaching the end of life should have their needs and preferences
recorded in a care plan, including any advance decision to refuse
treatment;
· families
and carers of people approaching the end of life should be involved
in decision making and provided with practical and emotional support
both during the person's life and following bereavement;
· measurement
of end of life care provision was necessary to monitor progress
and facilitate change;
· better
use should be made of end of life care financial resources across
health and social care. The Government committed an additional
£383 million to implement the strategy;
· the
Liverpool Care Pathway, or an equivalent tool, was recommended
for wider use than for patients with cancer—it should be
used in hospitals, care homes, hospices and in people's homes.
17. The Strategy set out the key elements of an end
of life care pathway and stressed that it was crucial that open
discussions between health and social care staff, patients and
their families and carers take place, to ensure the delivery of
good end of life care. The Government recognised, however, that
these discussions regularly failed to take place and that it would
be a challenge to reverse that trend.[20]
18. The Strategy described the Liverpool Care Pathway
for the Dying Person (LCP) as "a multi-professional, outcome-driven
document that provides an evidence-based framework for the delivery
of care in the last days or hours of life." This seemed to
suggest that the LCP was a stand-alone document, rather than what
it was intended to be: an approach to care in itself.
19. Until fairly recently, the LCP was widely used
across the UK (excluding Wales) and commentators, including witnesses
giving oral evidence to the inquiry,[21]
have acknowledged that where it was being used well it had a transformative
effect on the way that end of life care services were delivered,
supporting but not replacing clinical judgement. In a survey of
clinicians carried out by the British Medical Journal, 97% of
consultants said the LCP allowed patients to die with dignity
when used correctly.[22]
20. Giving oral evidence, Macmillan told us:
There were some aspects of it that were very
positive. I remember being a district nurse before the Liverpool
care pathway and after it, and I was very much involved in implementing
it in Cheshire where I worked. It made a huge difference to things
like anticipatory prescribing of medication, because we used to
struggle to get GPs to get medication into somebody's home. If
people were in the dying phase, we had the drugs prescribed and
ready to use.
21. However, following media criticism and reports
of poor treatment in acute hospitals at nights and weekends, lack
of access to specialist palliative care teams out of hours and
at weekends, and poor levels of care and communication an independent
panel, chaired by Baroness Neuberger, was established in 2013
to review its use.
22. The review panel found evidence of both good
and poor care delivered through use of the LCP. Use of the Pathway
led, in some cases, to standardised treatment and care, carried
out irrespective of whether that was right for the particular
person in the particular circumstances, causing unnecessary distress
and harm to dying people and those who were important to them.
One of the submissions to the review reported: "He was
not given sufficient pain relief or sedation to ease his discomfort
from what in effect was a slow death, attributable in part to
dehydration and starvation."[23]
23. In their report the panel said:
The Review panel has reluctantly concluded that
the term 'Liverpool Care Pathway' is most unhelpful: anxious and
upset relatives cannot be expected to understand what an 'integrated
care pathway is, let alone what it has to do with Liverpool. A
'pathway' suggests to most people a road that leading somewhere.
When someone is 'put on' a pathway, it sounds like, as one carer
put it, they are being placed on "a conveyor belt to death".
In the context of the debate about assisted dying and euthanasia,
some carers have formed the impression that "the pathway"
represents a decision on the part of clinicians, in effect, to
kill their dying patients, when that is clearly not the case.
24. The panel concluded that in too many cases, the
LCP had come to be regarded as a generic protocol and used as
a 'tick box' exercise, leading to problems with delivery of care.[24]
As a consequence they recommended that use of the LCP should be
phased out by July 2014 and replaced by an individual end of life
care plan.
25. Baroness Neuberger commented:
Ultimately it is the way the LCP has been misused
and misunderstood that has led to such great problems, along with
it being simply too generic in its approach for the needs of some.
Sadly, it is just too late to turn the clock back to get it used
properly by everybody. That is why we have recommended phasing
out the LCP and replacing it with a more personalised and clinically
sensitive approach.[25]
26. The Leadership Alliance for the Care of Dying
People (LACDP), set up after the independent review of the Liverpool
Care Pathway, has developed a new approach to caring for dying
people that is expected to be adopted by health and care providers.
This approach focuses on the individual needs and wishes of the
dying person and those closest to them, to both plan and deliver
care. It centres around Five Priorities for Care which form a
focus for care, as well as education and training, audit and research.[26]
27. The Five Priorities for Care are that, when it
is thought that a person may die within the next few days or hours-
· This
possibility is recognised and communicated clearly, decisions
made and actions taken in accordance with the person's needs and
wishes, and these are regularly reviewed and decisions revised
accordingly.
· Sensitive
communication takes place between staff and the dying person,
and those identified as important to them.
· The
dying person, and those identified as important to them, are involved
in decisions about treatment and care to the extent that the dying
person wants.
· The
needs of families and others identified as important to the dying
person are actively explored, respected and met as far as possible.
· An individual
plan of care, which includes food and drink, symptom control and
psychological, social and spiritual support, is agreed, co-ordinated
and delivered with compassion.[27]
28. Macmillan Cancer Support were part of the LACDP
that developed the Five Priorities for Care. In their written
evidence they comment:
We understand the Department of Health will be
conducting a review of progress in 2015. Anecdotally, however,
there are problems with the implementation of these priorities
as professionals report concerns that the picture is variable.
Some areas have worked well across their locality and sectors
to develop local guidance and documentation based on the recommendations
of the Neuberger Review and, more recently, the Five Priorities
for Care. Other areas, however, are still using the Liverpool
Care Pathway by a different name.
29. The Department for Health has stressed however
that the LCP is no longer valid and should not be used. Norman
Lamb, giving evidence to the inquiry, explained:
It should not be used … Absolutely not.
We have been very clear about this. If clinicians and other health
care workers, and indeed their employers, follow the principles,
they will be on the right track. I commissioned the review by
Baroness Neuberger and her team, and I wanted them to remain in
place as a panel to monitor what happens over the first year of
this new approach, so they are there ready to look at and monitor
how things are going. It would be wholly wrong for a hospital,
for example, just to rebadge their approach or their use
of the Liverpool care pathway, call it something else, and carry
on as before. It is not what everyone came together to achieve.[28]
30. Dr Martin McShane from NHS England, told us:
We need to go back to the origins of the end
of life care strategy from 2008, a 10year strategy which
set out some clear principles about addressing the key changes
that were required. We have made quite a degree of progress in
delivering that strategy…[29]
We are thinking about trying to do it in the
way we do things now, and we need to step outside that and ask
what we need to change about our approach that would make this
normal—which would make this the way we approach it.[30]
31. The Royal College of Physicians has found that
many Trusts are not sufficiently assessing or discussing the quality
of care available to patients. For example, only 53% of Trusts
have a named board member with responsibility for the care of
the dying and it had only been discussed at a Board meeting in
42% of Trusts in the last year. Their written evidence states:
There is further evidence of low levels of assessment
of delivery of end of life care. Only 56% of Trusts have conducted
a formal audit of care in the previous year, despite recommendations
that an audit into the delivery of care should be conducted annually.
Trusts must recognise the importance of palliative care and ensure
that the delivery of services are regularly assessed and discussed
at board meetings so that patients' needs are sufficiently met.[31]
32. Sir Mike Richards told us:
I have been to hospitals where it is very clear
that those leading end of life care have direct access to the
chief executive and the director of nursing, and others where
that is not the case. Those where there is senior leadership and
oversight tend to have made much more progress in moving on to
what are now called the five priorities for care. Again, in that,
as in everything else, there is wide variation.[32]
33. The move by the Care Quality Commission (CQC)
to prioritise end of life care in its new approach to inspections
across all sectors is very welcome. We hope that it will go some
way towards ensuring that poor end of life care is seen as a 'never
event', as suggested by a witness to the inquiry.[33]
The CQC has also begun a thematic review of the quality of end
of life care, to understand the barriers that prevent people receiving
good end of life care. They will report on their findings during
2015. [34]
34. Every care
provider should have a model in place based on the Five Priorities
for Care that will deliver personal, bespoke care to people at
the end of life. There should be no reason for any health or care
organisation not to have introduced an appropriate alternative
to the Liverpool Care Pathway.
35. We recommend
that a senior named person in each NHS Trust and care provider
is given responsibility for monitoring how end of life care is
being delivered within their organisation.
36. We welcome
the focus on end of life care by the Care Quality Commission and
recommend that they monitor both acute and community health care
providers' move to the new approach in their inspections and as
part of their thematic review.
2 ELC 47, page 2 Back
3
Office for National Statistics (2013) What are the top causes
of death by age and gender? Back
4
ELC 77, para 1.2 Back
5
Cicely Saunders Institute, Local Preferences and Place of Death
in Regions within England 2010 Back
6
Ibid., Back
7
ELC 47, page 5 Back
8
ELC 42, para 2.3 Back
9
ELC 36, page 3 Back
10
Department of Health, End of Life Care Strategy, 2008 Back
11
ELC 49, para 8.1 Back
12
Association for Palliative Medicine, December 2012, Commissioning
Guidance for Specialist Palliative Care: Helping to Deliver Commissioning
Objectives Back
13
General Medical Council, May 2010, Treatment and Care Towards
the End of Life: good practice in decision making Back
14
National Council for Palliative Care and National End of Life
Care Programme, June 2011, Commissioning End of Life Care Back
15
http://www.who.int/cancer/palliative/definition/en/ Back
16
Association for Palliative Medicine, December 2012, Commissioning
Guidance for Specialist Palliative Care: Helping to Deliver Commissioning
Objectives Back
17
ELC 47, page 3 Back
18
Qq106-107 Back
19
Association for Palliative Medicine, December 2012, Commissioning
Guidance for Specialist Palliative Care: Helping to Deliver Commissioning
Objectives Back
20
Department of Health, End of Life Care Strategy, 2008 Back
21
Q28 Back
22
http://www.bmj.com/content/346/bmj.f1303 Back
23
More Care Less Pathway: A Review of the Liverpool Care Pathway Back
24
Leadership Alliance for the Care of Dying People, June 2014,
One Chance to Get it Right Back
25
More Care Less Pathway: A Review of the Liverpool Care Pathway Back
26
House of Commons POST Note 481, Palliative and End of Life
Care, 2014 Back
27
Leadership Alliance for the Care of Dying People, June 2014, One
Chance to Get it Right Back
28
Q175 Back
29
Q177 Back
30
Q189 Back
31
ELC 16, para 8 Back
32
Q26 Back
33
Q8 Back
34
ELC 85, para 21 Back
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