Memorandum by Dr John Ellershaw and Deborah
Murphy (PC 29)
As National Clinical Leads in Palliative Care
for the Cancer Services Collaborative we welcome the opportunity
to contribute evidence to the inquiry. One of our main aims is
to empower health care professionals in care for the dying by
implementing the Liverpool Care Pathway for the Dying Patient
(LCP). The pathway has been used to care for patients with cancer
and other life limiting diseases in all care settings.
1.1 Too often, patients' last weeks, days
and hours of life are spent in avoidable pain, discomfort and
confusion, causing additional unnecessary distress and trauma
to carers, loved ones and all others affected by imminent deathincluding
healthcare staff often struggling to do their best in difficult
1.2 The LCP empowers doctors and nurses
to deliver high quality care to dying patients and their relatives.
It facilitates multiprofessional communication and documentation,
integrating national guidelines into clinical practice. The project
promotes the education and empowerment role of the Specialist
Palliative Care Team to bridge the theory practice gap. It provides
demonstrable outcomes to support clinical governance and should
reduce and inform complaints commonly associated with this area
of care. The LCP was awarded National Beacon Status in the category
Palliative Care in September 2000.
1.3 The aim of the LCP Project is to translate
best practice for care of the dying from the hospice into the
acute sector and develop outcome measures at the end of life.
The aim now is to build on the existing Beacon Dissemination Programme
and co-ordinate a national model of spread and sustainability
of the LCP across the 34 NHS Networks linked with the CSCIP and
supported by Marie Curie Cancer Care.
1.4 The LCP project will achieve its outcomes
through a national infrastructure implementing an educational
and evaluation spread model that will enable the uptake of the
LCP within a collaborative approach that translates into the mainstream.
The key methodology adopted by the national infrastructure will
be based on a robust Ten Step Implementation Programme and a Research
and Evaluation Model. This supports clinically based educational
programmes, sustained interest in the clinical workforce and attention
to cultural organisational changes to ensure achievement of objectives
2. The Liverpool Care Pathway Project is applicable
to a number of points within the Terms of Reference of the Enquiry.
2.1 Issues of choice in the provision, location
and timeliness of palliative care services, including support
to people in their own homes
The implementation of the LCP involves an education
programme by specialists in palliative care to empower generalists
to deliver high quality care to dying patients. This empowerment
of generic workers enables patients to be recognised as in the
dying phase and treated with dignity in their own homes.
2.2 Equity in distribution of provision
both geographical and between different age groups
The LCP provides a framework of care that is appropriate
for all age groups and although initially developed for cancer
patients has been used in a wide range of disease types including
renal failure, chronic obstructive airways disease and cardiac
failure. Frameworks are currently being developed for Intensive
Care Units and Paediatric Services.
2.3 Communication between clinicians and
patients; the balance between people's wishes and those of carers,
families and friends' the extent to which service provision meets
the needs of different cultures and beliefs.
The Liverpool Care Pathway identifies the key
areas of care for dying patients, including the physical care
with associated guidelines for pain control, agitation, respiratory
tract secretions and nausea and vomiting.
Psychological issues relevant to the patient
and social support of the family are also identified. Importantly
communication with the family that the patient is dying is a key
area identified in the LCP. Issues of language/translation and
respecting and meeting the needs of different cultures and beliefs
is also incorporated within the framework.
2.4 Quality of service and quality assurance
The LCP provides ongoing recording of care which
can then be audited and analysed. We are currently working on
a benchmarking pilot project within the Merseyside and North Cheshire
Cancer Network and are also in discussion with the Royal College
of Physician Outcomes Unit regarding a National Project in this
area. Benchmarking care of the dying is an important step forward
in quality assurance and the clinical governance agenda.
2.5 Governance of charitable providers,
standards of organisation, links to the NHS and specialist services
The LCP framework incorporates evidence based
care and national guidance into everyday practice. It also highlights
areas of care that have not been carried out as well as acting
as benchmarking tool. It therefore links directly with issues
of clinical governance. Following the education programme the
LCP framework helps guide practice for generic health care workers
who can then access specialist support if required. It has been
implemented not only in the NHS, but also within the voluntary
sector in hospices and nursing homes.
2.6 Workforce issues including the supply
and retention of staff and the quality and adequacy of training
The Liverpool Care Pathway Framework has been
incorporated into training programmes for care of the dying and
leads to a framework of care that generic health care workers
can then deliver to dying patients. It promotes the education
and empowerment role of the Specialist Palliative Care Team.
2.7 The impact and effectiveness of Government
policy including the National Service Frameworks, the Cancer Plan
and NICE recommendations.
Care of the Dying was highlighted in the Cancer
Plan with regard to improvement of the care of the dying to the
level of the best. It has also been highlighted in a number of
National Service Frameworks including Coronary Heart Disease and
Quotes from National Services Framework and Care
of the Dying
"Too many patients will experience distressing
symptoms, poor nursing care, poor psychological and social support
and inadequate communication from healthcare professionals during
the final stages of an illness. This can have a lasting effect
on carers and those close to the patient, who often carry the
burden of care. The care of all dying patients must improve to
the level of the best"
"The NHS Cancer PlanA plan for investment,
A plan for reform" 2000;Department of Health Chapter 7,21:66
"In stroke where recovery is not possible,
this should be recognised by staff. The care of the patient should
be discussed with them as far as possible and with their carers
as appropriate. The principles of palliative care should inform
the care plan, with priority being given to supporting the patient
to die with dignity, without unnecessary suffering and in the
place of their choice wherever possible".
National Service Framework for Older People
2001; Department of Health, Chapter 5,5:23
"When the underlying aim of treatment is
to control symptoms, a palliative approach with help from palliative
care specialists can improve a patient's quality of life."
National Service Framework for Coronary Heart
Disease 2000;Department of Health, Chapter 6,18
NICE Guidance for Supportive and Palliative Care
The LCP Framework is incorporated within the
new NICE Guidance for Supportive and Palliative Care both within
the generalist palliative care section and as:
Key Recommendation 14:
"In all locations, the particular needs
of patients who are dying of cancer should be identified and addressed.
The Liverpool Care Pathway for the Dying Patient
provides one mechanism for achieving this."
3. Recommendations for action
3.1 The Liverpool Care Pathway has provided
a framework to translate best practice of Care of the Dying in
a hospice setting to other care settings. Adequate resources should
be made available to disseminate the LCP framework throughout
3.2 It is important to sustain the LCP Project
by benchmarking on a National basis care of the dying in all care
3.3 A unified approach and adequate resources
from health and social care should be provided for patients who
choose to be cared for in their own home or a nursing home rather
than being admitted to an acute hospital to die.
3.4 A key development which would promote
best practice for care of the dying for all patients in all settings
with all diseases would be the formation of an end of life collaborative/alliance.
This could drive forward the national policy identified within
this submission together with promoting other models of excellence
of care of the dying and palliative care.
1. Ellershaw J E Wilkinson S Co-editor and
Contributor "Care for the dying: A pathway to excellence".
Oxford University Press, April 2003.
2. Ellershaw J E, Murphy D, Shea T, Foster
A, Overill S "Development of a multiprofessional care pathway
for the dying patient" European Journal of Palliative Care
3. Ellershaw J E, Ward C "Care of the
dying patient: the last hours or days of life" BMJ 2003;326:30-4.
4. Ellershaw J E, Smith C, Overill S, Walker
S E, Aldridge J "Care of the dying: Setting standards for
symptom control in the last 48 hours of life" Journal of
Pain and Symptom Management 2001; 21(1):12-17.