Bolton Palliative and End of Life Care
Useful Definitions
A Working Definition of End of Life Care
- End of Life Care is care that helps all
those 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
- Underpinning Principles
- End of Life Care is underpinned
by:
- An active compassionate approach
to care that ensures respect for and
dignity of the patient and family
- Partnership in care between
patient, family and health and
social care professionals
- Regular and systematic
assessment of patient/carer needs
incorporating patient consent at all
times
- Anticipation and management of
deterioration in the patients state
of health and well-being
- Advance care planning in
accordance with patient preferences
- Patient choice about place of
care and death
- Sensitivity to personal,
cultural and spiritual beliefs and
practices
- Effective coordination of care
across all teams and providers of
care (in statutory, voluntary and
independent sectors) who are
involved in the care of patient and
family
Definition of key terms
- The phase ‘end of life’ ends in death.
Definition of it’s beginning is variable
according to individual patient and patient
perspectives. In some cases it may be the
patient who first recognises it’s beginning. I
other cases it may be the judgement of the
health/social care professional/team responsible
for the care of the patient. In all cases,
subject to patient consent, the beginning is
marked by a comprehensive assessment of
supportive and palliative care needs.
- Professional judgement may be informed by
the use of a range of indicators, they include:
- The Surprise Question. Would you
be surprised if the patient were to
die in the next 12 months
- Choice. The patient with
advanced disease makes a choice for
comfort care only
- Need. The patient with advanced
disease is in special need of
supportive/palliative care
- Clinical Indicators. Specific
indicators of advanced disease for
each of the main groups – people
with cancer, organ failure, elderly
frail/dementia
End of life does not normally begin earlier than one year
before death and for most individuals it may come much later
than that. However in some cases discussions with
individuals about end of life may start much earlier e.g. at
the point of recognition of incurability.
Palliative care
Palliative care is the active, holistic care of patients
with advanced, progressive illness. Management of pain and
other symptoms and the provision of of psychological, social
and spiritual support is paramount. The goal of palliative
care is achievement of the best quality of life for patients
and their families. Many aspects of palliative care are also
applicable earlier in the course of the illness in
conjunction with other treatments.
Supportive care
Supportive care is an ‘umbrella’ term for all services,
both generalist and specialist, that may be required to
support people with life threatening illness. It is not a
response to a particular disease or it’s stage, but is based
on an assumption that people have needs for supportive care
from the time that the possibility of a life threatening
condition is raised.
Care of the Dying
Care of the dying is the care of the patient and family
in the last hours and days of life. It incorporates four key
domains of care, physical, social and spiritual and supports
the family at that time and into bereavement.
Family
Family includes informal carers and all those that matter
to the patient
NOTES:
- The prognostic indicators have been derived
form Guidance published in 2006 by the Gold
Standards Framework Programme
- The definitions of palliative care,
supportive care and care of the dying have been
derived from the NICE Guidance on Improving
Supportive and Palliative Care for Adults with
Cancer
Prepared by Peter Tebbit, National Policy Adviser,
National Council for Palliative Care in association with
Claire Henry, National Director, end of Life Care Programme
