1.1 Mainstream palliative care in the NHSLearning
from the developments in the palliative care specialty, we need.
now to mainstream high quality end-of-life care throughout the
NHS, available from any clinician, for all patients with any diagnosis,
and their carers, in any setting at any time. We can build a healthcare
system that responds to the needs of three types of patientscancer,
organ failure and dementia/frailty patients.
1.2. Looming healthcare epidemic with significant
implicationsBetter treatments, changing demography and
aging populations living longer with serious morbidity mean that
significantly more people need palliative/supportive care for
longer in futureit is a looming problem of epidemic proportions
with real healthcare implications that we currently have not addressed.
1.3. Develop generalist care provided by
all, especially at homeWe need to build on, extend and
develop the two tried and tested frameworks already used to improve
care for patients in their own homes ie the Gold Standards Framework
in Community Palliative Care (supported by the Cancer Services
Collaborative and Macmillan) and the Liverpool Care Pathway (supported
by Marie Curie). We need to work closely with social services
to develop better community health/social support eg night sitters,
carer support, access to nurses, extend Continuing Care Funding
etc to allow more to remain at home in the final weeks of life.
1.4. Form a National End of Life Alliance
and use the already formed Palliative/ Supportive Care Networks
to implement changeCare at the end of life is the responsibility
of the whole community, not just those in the specialty of palliative
care. Led by a new National End of Life Alliance, we need to build
on the expertise already developed and the emerging interest,
initiatives and resources (eg the Palliative/Supportive Care Networks
linked to each of 34 Cancer Networks) to support patients towards
the end of life, linked with others groups representing other
2. TERMS OF
Control, choice and self determination
are extremely important issues for dying patients and their families
(see Age Concern Debate of the Age 2000Section 5.5).
There are a limited number of choices
in end of life carelocation, treatments, involvements of
personnel etc. Ensuring that most die at home if that is their
wish is a fundamental right.
We need to be able to offer one reliable
option, rather than a range of choices that will not be well delivered.
As people spend 90% of the final year of life at home, these choices
are largely based in the community and often involve improving
the usual generalist care provision. This would involve improving
the reliability of community support in the final weeks.
Improving community provision will
have an effect on other services ie reduce unnecessary admissions
and increase hospital capacity, reduce length of stay and hospital
mortality ratio and the overall secondary care financial burden.
We need to be able to deliver an
equitable system of care for all patients at the end of life,
with any diagnosis, in any setting at any stage.
We need to improve services for non-cancer
patients, in particular heart failure and COPD and renal failure
pts and to include provision for those with slow gradual decline
eg dementia/general frailty, especially in Care Homes.
Currently institutionalised care
is more likely for the poor, elderly, those with no carers, those
with long illnesses, women etc. We need to reduce the inequity
We need to develop services that
are fair and accessible for all ages including children and the
elderly. Care home provision needs to be included.
Services should be patient focused
and customised to their needsthis involves asking patients
about their preferences and building in advanced care planning.
Carer support is vitalcarer
breakdown is one of the main causes of institutionalised care.
We should encourage longer clinical
relationships eg the use of a key worker.
We should be able to respond to cultural
and religious differences with respect, attending to the specific
requests of patients and families.
We should build in effective tools
for communication and transfer of information eg electronic handover
forms for out of hours providers, home packs for carers, patient
response sheets, "Do Not Resuscitate" decision information
for ambulance staff, patient held records, multi- disciplinary
team meetings etc.
2.4 Support services including home care
Community/domiciliary based services
should be prioritised over institution based initiatives eg home
care teams, community nursing, night sitters training of care
Patients' main needs are symptom
control and a sense of security and support.
To achieve a sense of security and
safety, and to be able to participate in decision making the correct
information should be available in a form that is comprehensible
to the patient and carer.
Priority should be given to comprehensive
home care provision for an agreed period of time (night sitters,
auxilaries, access to nurses, domiciliary hospice support etc)
as in the Toronto model of full home care provision in the final
weeks of life as determined by patient need. This would prevent
Social services back up is vital
and appropriate use of non-medical services such as community
and faith group provision (examples of telephone support groups
run in the community etc).
2.5 Quality assurance and governance
Every patient deserves the best of
care towards the end of life.
There should be a greater focus on
quality of service provision rather than speed of appointments
or choice"All the care she received before meant nothing
because she died the way she died" (Husband of patient who
cried out in pain for the last hours of her life whilst a hospital
Performance management could be via
the PCT Clinical Governance systems and the Supportive/Palliative
CHAI assessment would incorporate
end of life assessments as a performance indicator for hospital
and primary care trusts.
2.6 Workforce issues and funding
The majority of patients towards
the end of life are cared for by their usual generalist clinician
eg GPs, District Nurses, ward or Care Home staff etc.
We need to maximise their input and
optimise care in three ways:
With the use of frameworks and
guidance eg Gold Standards Framework and Liverpool care Pathway.
With targeted and available education
eg Education centres, on line learning etc.
With access to back up support
from specialists eg NHS Direct advise line etc.
There are limited numbers of specialists
in palliative carewe need to ensure best use of their skills
and resources by referring the appropriate patients, once generalist
care has been maximised.
"The Primary Health Care Team
already provides, and will continue to provide, the mainstay of
care for most dying patients"Department of Health
Strategic planning and funding issues
must be examined broadly across the whole community, taking into
account the savings made to hospitals with better community support
(at approx £300/patient/day per hospital bed). Creative usage
of Outpatient care to support patients at home can be investigated
eg the New York "Ambulatory care" Salek model.
Charitable and voluntary bodies should
work effectively within the remits set for NHS care, with some
accountability to NHS structures also, to complement but not supplant
good provision. Piecemeal developments can worsen the lottery
of care if not fully integrated into strategic planning, as has
been evidenced in the random development of charitably funded
hospices or Nursing services (many now becoming better integrated).
2.7 Government policy
There needs to be an emphasis from
the top on the importance of improving end of life care in the
NHS, with consequent performance management and quality assurance.
We would like a dedicated minister
to develop policy issues as in Canada eg the provision of compassionate
leave, the provision of comprehensive home care services etc.
3.1 Formation of New End of Life AllianceThat
a National End of Life Alliance be established, with a specific
small working party (building on initial work to supervise the
latest £12 million investment), but with a view to expanding
this. This would include several representative bodies to oversee
overarching policy decisions, develop agreed frameworks and new
initiatives, building on five areas of provision. (see Sect..)
3.2 MinisterThat a minister be appointed
to oversee palliative care policy developments as in Canada eg
compassionate leave provided to care for dying person at home
and comprehensive home care provision become standard etc.
3.3 Dying at Home Support and FrameworksThat
increased support and emphasis be given to caring for people dying
at home ie empowering the generalist provision with the use frameworks
such as the Gold Standards Framework and the Liverpool Care Pathway,
plus examination of social and other generalist care.
3.4 Network structures used and fundedThat
Palliative/Supportive care Networks be supported and used to implement
national change across the NHS (such as the implementation of
GSF and LCP frameworks) and cross-organisational developments
such as in the Birmingham Supportive/Palliative Care Networks
Proposed strategy be encouraged and further funded.
3.5 Quality ImprovementThat national
support be given to develop improvement initiatives eg Continuous
Quality Improvement, a Supportive Care Collaborative etc, to encourage
locally owned and relevant developments and use the creative potential
of the grass roots workers.
Prof Joanne Lynn, Director of Americans for
Better Care of the Dying, writes
Why are we dependent on good luck for the one
inevitable event in our lives?
When asking bereaved carers about the death of
their loved ones, they either describe sad scenarios of mismatched
uncoordinated services causing great distress or, alternatively,
excellent quality care for which they are extremely gratefulbut
then they always added `weren't we lucky! In an age of high technology
when we can fly planes, and routinely undertake complex surgical
procedures why do we still have to rely on being lucky when addressing
problems related to care at the end of lifethe one thing
in life which will happen to us all? . . .
How did we come to do so poorly on care at the
end of life? A fundamental reason is we have simply never been
here before. We face problems our grandparents would envythe
problems that come from growing quite old and dying rather slowly
. . . So what will we need when we have to live with an eventually
fatal chronic disease? More than anything else we need reliabilitywe
need a care system we can count on . . . all it takes is innovation,
learning, reorganisation and commitment. People should not expect
end of life care to be miserable and meaningless . . . We should
receive good care without having to hope for good luck.
The Gold Standards Framework has had remarkable
uptake in Great Britainenabling any practising doctor in
any community to undertake specific actions that demonstrably
improve the reliability and effectiveness of the care given to
people coming to the end of life. By the end of this year, the
GSF will have become part of the practice in more than a tenth
of the practices in Britain and will have become part of the definition
of quality care for general practices and hospitals. The substantial
and enduring effects upon the well-being of very sick people and
their families can hardly be overstated, and the example of a
pragmatic quality improvement project that spread widely is instructive
to all who aim to improve health care. Joanne Lynn, February 2004.
"Better care for the dying should be a touchstone
for success in modernising the NHS" Sir Nigel Crisp March
"The care for the dying should be raised
to the level of the best." NHS Cancer Plan 2000
"Every hospital admission can be regarded
as a breakdown in home care" Kaiser Permanente US
4.1 Mainstreaming high quality end of life
care in the NHS
"In effect, instead of a choice of a Rolls
Royce for some we need a reliable basic Mini Metro for all."
We are now at a critical stage in our thinking
about the development of care for people towards the end of life
in the UK. There is increasing recognition of the importance of
improving supportive/palliative care for all patients at the end
of life with any diagnosis in any setting, at any stage within
the NHS, and growing public recognition that good care for the
dying is not a sign of failure but of successit is a significant
barometer of other care within the NHS. Almost 40 years on from
the pioneering developments in the UK of the modern hospice movement
and the specialty of palliative care, largely voluntarily funded,
we can applaud the significant improvements in care for some dying
patients. Yet still this is only available to a minorityit
is estimated that only 15-20% patients are under specialist palliative
care, and about 98% of these are cancer patients with the average
length of hospice stay being two weeks. Most end of life care
will always be provided by generalistsGPs and District
Nurses in the community, ward staff in hospitals and Care Home
staff. We can improve generalist care through improving access
to education and training and with the use of guidance or frameworks
(eg GSF and LCP), backed by specialist and social support. And
though most of the final year of life is spent at home, most patients
still die in hospital under generalists' care, despite most wishing
to die elsewhere. We need to rethink our end of life services
across the whole of the NHS, social service and voluntary providers
to ensure we can maintain the best quality of care for all, and
to develop generalist palliative care provision for all supported
by specialist palliative care for the appropriate few. This should
include patients dying with heart failure, COPD, renal failure,
dementia or general decline/old age as well as those with cancer.
Examples of developments from overseas are stimulating and the
impact of the availability of euthanasia crystallises the importance
of delivery of reliable systems of end of life care.
4.2 Looming Epidemic
With sicker people living longer and with demographic
changes, there is a "looming epidemic" of significant
problems in end of life care awaiting us and we currently do not
have the systems in place to cope . . .
"If we don't get it right for dying patients
then what are we about?" (David Carson, Department of Health
Out of Hours Implementation Group June 2001)
100% mortality for all is an immutable fact
that demands our full attention, amidst numerous demands for funding
priorities. We have struggled to address this in a piecemeal way
so far because we have not been here before and we have not planned
strategically for future needs in a reliable cross-organisational
multi-system way. With increasing longevity, an ageing population
living longer with ill health, more living alone and with fewer
carers available, we have not yet developed a health care system
able to cope with these rising problems, many of them social rather
than purely medical.
We are said to be a "death denying"
society with death as the last taboo, but perhaps in reality we
have developed a death denying health service until now. But the
time is right and we now have the capacity to reverse this trend
and to enable good planning for good end of life care, as we do
for beginning of life/antenatal care. Currently 90% of health
expenditure occurs in the last years of life, there is a shift
away from hospitals and hospices towards community care, more
than half die where they would not choose to and there are inherent
inequities in that the poor, elderly and socially isolated are
more likely to receive institutionalised care, with a greater
proportion of these being women. By 2020, 21% of the UK population
will be over 65. With this increase in the aging population there
will also be a decline in the health care workforce. Everyone
will know of someone who is dying or has recently died, whether
with excellent, moderate or poor levels of care, and the issue
of a health service adequate to cope with the increasing burden
is now raised higher on the agenda. With the importance of the
NHS in our nation's thinking, the increasingly vocal "User"
View becoming prominent, the Sixties baby boom generation becoming
more aware of the inadequacies of care for their parents plus
the growing elderly vote, this issue is becoming politically and
electorally very significant, as well as concentrating the mind
of many of us at a personal level.
4.3 Develop generalist care provided by all,
especially at homeeg Gold Standards Framework and Liverpool
Care pathway for the Dying
The Gold Standards Framework in Community palliative
care is an enabling tool to develop a practice-based system to
improve and optimise the organisation and quality of supportive/palliative
care for patients in their last six to 12 months of life. Based
on evidence-based guidelines and clinical competence, it ensures
patient-centred best practice becomes standard, so to improve
patients' experience of care.
The five goals of the Gold Standards Framework
to enable patients to "die well"
(1) as symptom free as possible;
(2) in their preferred place of choice;
(3) feeling safe and supported with fewer
(4) carers feeling supported, involved, empowered
and satisfied with care;
(5) staff feeling confident, satisfied, with
good communication and team-working with specialists.
The main processes are to (1) Identify, (2)
Assess, (3). Plan in advance care and to improve communication
and there are seven key tasks or standards relating to "the
C4 Continuityout of hours
C7 Care in the Dying phase
The GSF, developed and piloted over several
years, is now being used by almost 1,000 practices in England,
already a third of practices in Northern Ireland, and about 200
in Scotland with a NOF funded project to take this across all
practices over the next three years. A Macmillan GSF Support Programme
has supported the implementation and spread of GSF in four phases,
but comes to a close in 2005. In future the running of local GSF
programmes will be devolved to the Cancer/Palliative care Networks,
but further funding is required to ensure spread and sustainability.
It is being fully evaluated at Warwick University; with a national
collaboration of multi centre research projects in GSF and community
palliative care already underway.
The main overall benefits have been:
raised awareness of patients towards
the end of life;
better measuring of care and tracking
more patients dying in their preferred
place of choice (usually home);
better symptom assessment;
better communication within and between
teams and with patients and carers;
better co-ordination of care and
fewer crisis events or hospital admissions;
better information and support given
to carers; and
overall improved staff confidence,
communication and satisfaction with care provided.
Primary care teams, PCTs and Networks find it
helpful in enabling the development of local, practical and effective
improvements in care of cancer patients in the 6-12 months of
life. This is later extended to all palliative care patients with
any end-stage illness and also to the supportive care of patients
from diagnosis. 75% of practice teams in one phase are using GSF
for all end of life patients, not just those with cancer.
"Delivering the best possible range and
quality of palliative care services for patients is about providing
the right care at the right time in the right place. I commend
the Gold Standards Framework community palliative care as a helpful
tool to help improve and co-ordinate the care and support of seriously
ill patients and their carers". Hazel Blears, MP Minister
of Public Health.
"We feel we're giving a better quality of
care now to our most needy dying patients. It has formalised the
good practice we may have provided on a good day so that we give
the best of care to all our patients every time". GP, Huddersfield
"The Gold Standards framework is the one
thing in palliative care that has really made a difference".
District Nurse, Glasgow
For more details contact: firstname.lastname@example.org
email@example.com or 020 7840 4673 or www.macmillan.org.uk
or www.2oldstandardsframework.nhs.uk or www.modern.nhs.uk/cancer.
The Liverpool Care Pathway is an integrated
care pathway for the last 2-3 days of life and has received considerable
success in formalising and benchmarking good care in the final
stages. The GSF and LCP complement each other in the community,
but the LCP is also used in hospitals and hospices. For more details
4.4 Need for a new End-of-life Alliance
We need to be able to provide reliable care
at the end of life for any patient with any diagnosis in any setting
at any time.
At this pivotal stage, we need to broaden our
vision, rethink the strategic planning across all services and
plan realistically to increase the reliability of our systems
of care. Many patient needs are predictable yet we have not built
in reliable systems to cross the boundaries of care or meet basic
needs such as providing a 24-hour service. Building on the recent
announcement by John Reid of £12 million investment to develop
current initiatives in improving care for people coming to the
end of their lives. (such as the Gold Standards Framework and
the Liverpool Care Pathway) and linked with the commitment in
the recent Command paper "Building on the best" to offer
appropriate support in the place of choice, we would suggest that
we need to develop a new End of life Alliance to consider the
issues, encourage innovative developments and develop strategies
in greater depth along with the ability to suggest funded policy
changes. This would include representation from the specialties
of primary care, palliative care, care of the elderly, coronary
heart disease, etc as well as social services, voluntary and statutory
bodies. We can learn from initiatives from other countries
A similar example from Canada is well developed
(details enclosed), a collaborative model using IHI Improvement
Science in Sweden where they have developed new systems of end
of life care built around three patient types ("the three
Esters"one with cancer, one with organ failure eg
heart failure, and one with dementia and general frailty).
In the US, the example of the ABCD (Americans
for better care of the dying) and IHI End Of Life Collaborative
led by Dr Joanne Lynn have much to teach us about the benefits
of CQI, (Continuous Quality Improvement) in end of life care,
incorporating issues far beyond institutionalised hospice care
for cancer patients that can tend to dominate palliative care
in this country. Also the basic improvements for all nearing the
end of life developed in Oregon in response to the Physician Assisted
Suicide debate, where there is an imperative to provide good palliative
care to avert the need for requests for euthanasia, and the Kaiser
Permanente and Evercare initiatives.
In England we have the model of excellence provided
by palliative care specialists, well organised NHS structures
such as Supportive/Palliative Care Networks linked with cancer
networks beginning to broaden to improve end of life care across
all diagnoses, the forthcoming NICE Supportive and Palliative
Care guidance (March 2004) and the palliative care initiative
of the Cancer Services Collaborative, supporting the developments
of the Gold Standards Framework and the Liverpool Care Pathway
for the dying. We also have developments such as the National
Council of Hospice and Specialist Palliative Care 20/20 vision,
the Nuffield Buckingham Agreement, Pursuing Perfection End of
Life Workshops and other initiatives. A suggested model would
be a central End of Life Alliance with a specific working party
to help coordinate and support the Palliative/Supportive care
Networks, related to the new NICE guidance, funding further developments
and quality improvements and sharing good practice, with some
influence on policy decisions.
The time is right to celebrate our achievements
so far but to undertake a major rethink of the way we develop
health and social care to meet the needs of people nearing the
end of their lives in anticipation of this looming epidemic of
End of life care in Canada
The Canadians have a national strategy for end
of life care, and have appointed a minister for social responsibility
for palliative care. The national strategy has resulted in six
weeks compassionate care leave for all Canadians. From January
2004 Canadians have their job and income protected to look after
a family member at the end of life. One family member can take
six weeks or this can be divided between multiple family members
in any variation. A "virtual hospice" has also been
developed. This offers education and training for health professionals,
online nurse practitioner and consultants and chat rooms, where
people can log on and talk openly about issues that are important
to them, including bereavement issues etc.
Preferences and practice about place of death
place of death
|Where people with|
|Where people die|
Source: Higginson, I (2003) Priorities and Preferences
for End of Life Care in England, Wales and Scotland. National
Council for Hospice and Specialist Palliative Care.
5.3 ExampleSuggested plan for End of life careas
proposed for the Pan Birmingham Palliative/supportive care Network
1. AimTo provide excellent care for patients towards
the end of life provided by any clinician for any patient and
their carer in any setting at any stage.
2. Five stagesEnsuring the best end-of-life care:
(a) Framework for generalist supportive careGSF+LCP;
(b) Plus Accessible Education eg on line learning.
2. Any Carer (Informed, empowered and enabled).
3. Any Patient (Cancer + non-cancer patients eg Heart failure
4. Any Place (Care Homes, Hospitals and Comm. Hospitals, Hospices).
5. Any Time (Throughout journey eg from diagnosis).
3. Three patient groups3 typical trajectories
of illness with distinct needs, characteristics and requirements:
2. Organ failure patients eg Heart failure, COPD, renal, neurological
3. Dementia and frailty/ multiple pathology of old age.
4. Policy changes:
To remove barriers /disincentives and develop
As suggested in Canadian Policy remit to develop
compassionate leave for carer of dying patient.
Develop other policy interest in end of life care.
Supportive care/ end of Life network eg Pan-Birmingham.
Continuous Quality improvement initiatives- eg
via Modernisation Agency/CSC.
5.4 Three types of dying patientApprox Distribution
(from Joanne LynnLiving Well at the End of Life White
Paper Rand Health 2003)
5.5 Age ConcernDebate if the AgeMillennium
Edition of the British Medical Journal
Demonstrating the importance of some retention of control
self-determination and choice at this stage.
Twelve Principles of good death:
To be able to retain control of what happens.
To have control over pain relief and other symptom
To have choice and control over where death occurs
(at home or elsewhere).
To have access to hospice care in any location,
not only in hospital.
To have control over who is present and who shares
To be able to issue advance directives which ensure
wishes are respected.
To know when death is coming, and to understand
what can be expected.
To be afforded dignity and privacy.
To have access to information and expertise of
whatever kind is necessary.
To have access to any spiritual or emotional support
To have time to say goodbye, and control over
other aspects of timing.
To be able to leave when it is time to go, and
not to have life prolonged pointlessly.
BMJ Jan 2000.
5.6 Age Profile of deaths:
NB Further information available:
More details of Gold Standards Framework and its
US Professor Joanne Lynn's policy document on
End of Life Care.
Canadian policy plan as described.
Example of Swedish End of Life Collaborative and
References to support statementsfrom "Caring
for the Dying at Home: Companions on the Journey" K Thomas
Radcliffe Medical Press Evidence base chapter and other sources.
5.7 Proposed Plan of National End of Life Alliance
NATIONAL END OF LIFE ALLIANCE
Joanne Lynn Institute of Healthcare Improvements. Accelerating
Change Today October 2000 National Coalition on Healthcare