Understand How to Work in End of

Life Care: Unit 1

Unit Reference: A/503/8085

Ground rules:
The CORNER- STONE of training
Confidentiality
Opportunity for all participants to talk and be heard
Respect
Negotiate
Emotions
Remaining group ground rules.
Support
Training
Opportunities
Nurture & develop
End of life care knowledge & confidence

Qualifications and Credit Framework (QCF) units

BTEC Level 3 Award in:
Awareness of End of Life care
24 October 2015
(A/503/8085)

Understand how to work in end of life care

(Level 2: 3 credits)

12 November
2015
(Y/503/8689)

Understand how to provide support when working in end of

life care
(Level 3: 4 credits)

26 January 2016
(J/503/8137)

Understand how to support individuals during the last days

of life
(Level 3: 3 credits)

Evidence of learning
for QCF units
Learning from each unit evidenced within workbooks
Workbooks validated and assessed by Bracknell &
Wokingham College
Time allocated at each training day to begin workbooks
Unit 1, workbook to be handed in at next training day
(12th November)
For further information & support contact:
o Joy Baker: Bracknell & Wokingham College
o Liz Rankin: 07789504568 or liz.rankin@berkshire.nhs.uk

Analyse

Identify separate factors, say how they are

related and how each one contributes to the topic

Define

Clearly explain what a particular term means

Describe

Give clear description, including all relevant features:

paint a picture with words

Explain

Set out in detail the meaning of something, with reasons; it

can help to give an example to show what you mean.
Introduce the topic, then give the how or why OR provide
details and give reasons and/or evidence to support the
argument you are making

Evaluate

Review the information, then bring it together to form a

conclusion. Give evidence for each of your views or
statements

Identify

Point out or choose the right one / give a list of the main
features

Common core principles &

competences (SFC, 2014)
Care & support is planned & delivered in person
centred way: persons priorities guiding all decisions &
actions
Communication is straightforward, appropriate, timely
& sensitive
EOLC provided through integrated working
Good, clear & straightforward information is provided to
service users & carers
Regular reviews & advance care planning
The needs & rights of carers are acted upon
Employers provide appropriate training:

End of Life core competencies

(Skills for care, 2014)
Overarching values &
knowledge

Symptom
management:
comfort &
well-being

Assessment
& care
planning

High quality
personcentred
EOLC

Occupation
specific
requirements

Advance care
Planning

Communication
skills

Understand how to work in End of

Life Care
(Unit: A/503/8085)

Aim:
To have a greater understanding of
how to work in End Of Life care

Outcomes:
1.Know different perspectives on death and dying
2.Understand the aims, principles & policies of end of life
care
3. Understand factors regarding communication in end of
life care
4.Know how to access the range of support services
available to individuals & others

Death and Dying

Why Dying Matters to Me
http://www.dyingmatters.org/page/why-dying-matters-me

What influences our own views

on death & dying? (1.2, 1.3)
Task 1:
Think about your own life & what has
influence your views on D&D. Make notes
in workbook.
Has that influenced how you deliver care?

1.1 Outline the factors that can affect an individuals

views on death & dying

Social

Cultural

Social relates to human society & its

organisation (Longman, 1998)
Culture: The ideas, customs, and social behaviour
of a particular people or society..The attitudes
and behaviour characteristic of a particular social
group (http://www.oxforddictionaries.com)

Spirituality. Refers to questions related

to meaning, purpose, and religious and/or
non-religious beliefs and values
(http://www.csi.kcl.ac.uk/spirituality.html)

Religion

Religion: a particular system of faith &

worship (Concise Oxford Dictionary, 1982)

Psychology

Psychology: a study of behaviour &

mental processes (Payne & Walker, 1996)

Social

Cultural

Religion &
spirituality
Psychological

Attitude of family & friends (fear, anxiety, sorrow, anger etc.)

Decisions made to please family & friends
A persons own experiences of death & dying
Fear of a future loss of capacity
A persons own physical & mental condition
Age & gender
Exposure to life threatening, chronic illness
Media coverage
Occupation: nurse, doctor, carer
Death as a taboo
The rights of the individual
Role & attitude of the family
Role & understanding of medical profession
Need to adhere to particular patterns of behaviour
Strong religious beliefs or no religious beliefs
Search for meaning through religious or non religious
beliefs & values

Task 2: Identify a service

user (1.1,1.3, 1.4, 3.1)
List briefly service user history (age, what was wrong,
family/carers, how unwell was person?)
What factors influenced the service users views on
death and dying?
What influenced the care they requested and the care
they received
Whether the attitudes of other people influenced the
service users choices
In what way and why did the service users priorities
or choices regarding their care & their ability to
communicate these change over time

Five Statutory Principles:

Mental Capacity Act 2005 (MCA)

2.2 Dignity
Dignity focuses on the significance and value of
every person as a unique individual. We show our
commitment to upholding other peoples by the
ways in which we treat them; fairly, truthfully and
with care and compassion. We respect others
views, choices and decisions and do not make
assumptions about what they want, like or how
they want to be treated.
(Skills for Care 2013)

Factors that promote dignity in

care: promoting a sense of self respect?
(http://www.scie.org.uk/publications/guides/guide15/factors/communication/index.asp)

Choice and
Control

Communication
in a way that is
meaningful

Value workplace cultures that

actively promote the dignity

2.3 In what way do we promote

comfort & wellbeing for service users?
By:
Recognising that symptoms may have many causes
Their significance to individuals will vary
The need to understand underlying cause of the symptom
Need to be aware of a range of therapeutic options:
medication and other treatments
In partnership with others including service user, family &
friends develop an EOLC plan to meet individual needs
Implement, monitor & review the EOLC plan
Aware of cultural issues that may impact on symptom
management

Reflect again on service user & explain

why it was important to provide
support in a way that promoted their
dignity and comfort and well-being?

Further Reading/Resources
Find out more about how the attitudes of others can influence
individual EOL choices at following websites:
Dying Matters Coalition
http://www.dyingmatters.org/
Cultural Issues
http://sccheps.org/EndOfLife/004CulturalissuesSurroundingEndOfLife
Care.pdf
Factors that affect our views on deaths and dying
http://journeyofhearts.org/kirstimd/AMSA/self_assess.htm#Answers:

Learning Outcome: 2
Understand the aims, principles & policies
of end of life care

General(ist) Palliative Care

A. Services in all sectors providing day-to-day care
to patients with advanced disease and their carers,
designed to alleviate symptoms and concerns, but
not expected to cure the disease.
(Adapted from: Improving Supportive and Palliative Care for
Adults with Cancer, 2004)

Palliative care
B. ..is an approach that improves the quality of
life of patients and their families facing the
problems 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.
(WHO 2002)

End of life care

C. .those individuals likely to die within the
next 12 months, including people for whom death
is imminent. Such people may have an advanced,
progressive, incurable condition. Alternatively they
may be generally frail with coexisting conditions
making death within 12 months likely or they might
have suffered a catastrophic event causing a lifethreatening acute event
(www.gmc-uk.org)

Terminal care
D. ..usually refers to the management of patients
during their last few days or weeks or even months
of life from a point at which it becomes clear that
the patient is in a progressive state of decline.
(Maltoni1 & Amadori (2001) Palliative medicine and
medical oncology. Annals of Oncologv 12 443-450.2001)

Specialist Palliative Care

E. .. is the active, total care of patients with
progressive, advanced disease and their families. The aim
of the care is to provide physical, psychological, social and
spiritual support... this care is provided by a multiprofessional team..
(Tebbit, National Council for Palliative Care, 1999)

they will address ..complex problems.physical,

psychological, social and spiritualwhich generalist
services.cannot always deal with effectively.
(NICE, 2004)

EOLC: Recent history

End of Life Care Strategy (2008)
The aim was to promote high quality end of life care in any
setting and for any condition..further strategies and
reports were produced and new care processes, indicators
of quality and funding systems.
The strategy identified the key stages of the local End of
Life Care Pathway

National Palliative and

EOLC Partnership (2015)
Their vision is: I can make the last stage of my life as good
as possible because everyone works together confidently,
honestly and consistently to help me and the people who are
important to me, including my carers (National Voices, 2015)
Six ambitions to make vision happen:
Each person is seen as an individual
Each person gets fair access to care
Maximising comfort and well being
Care is coordinated
All staff are prepared to care
Each community is prepared to help

2.1
Aims & principles of end of life care
To treat people as individuals, with dignity and respect
To ensure people have a comfortable death with their
physical and psychological needs met.
To ensure people can die in the place of their choosing,
in familiar surroundings and in the company of close
family/friends.
To ensure religious and spiritual needs are met.
To ensure cultural needs are met.

Approximately I year before death

1
Advancing Disease:
approximately 6 months
or less before death
2
Increasing decline (Weeks)
3
Last days of life
Death
4
First Days after Death
5
Bereavement
Approximately 1 year after death

2.6 National guidance and

policy for care after death?
Written by experts following a review of evidence
Consulted with people & organisations responsible for care after
death
Underpins future training
Provides the basis for local guidance
Provides best practice guidance:
Care before death
Care at time of death
Best practice & legal issues
Care after death
Personal care after death
Transfer of deceased person
Recording care after death

Advance Care Planning

Advance care
planning

Advance Statement
(wishes &
preferences)

Advance Decisions
to refuse treatment

Lasting Power of
Attorney

Do Not attempt Cardiopulmonary

Resuscitation (DNACPR)

Advance Care Planning.

A voluntary process of discussion and review
To help an individual who has capacity to anticipate
how their condition may affect them in the future
And if they wish, set on record choices about their care
and treatment
And / or an advance decision to refuse a treatment
So that these can be referred to by those responsible
for their care or treatment in the event that they lose
capacity to decide for themselves

Confidentiality
A duty of confidence arises when one person discloses
information to another (e.g. patient to clinician)in
circumstances where it is reasonable to expect that the
information will be held in confidence.
(Confidentiality. NHS Code of Practice, 2003)
Does your organisation have a policy on confidentiality?
Why is it important?

Data Protection Act (1998)

..Controls how personal information is used by
organisations, businesses or the government. States that
information is to be used:
Fairly and lawfully
For limited, specifically stated purposes
o
o
o
o
o
o

In a way that is adequate, relevant and not excessive

Accurate
Kept for no longer than is absolutely necessary
Handled according to peoples data protection rights
Kept safe and secure
Not transferred outside the UK without adequate
protection

Learning Outcome: 3.2, 3.3, 3.4

Communication in end of life care

Did you know..

N.B. Mehrabians rule is

not based on robust
research.
However
- Without seeing and
hearing non-verbals it
is easier to
misunderstand the
words.
- If unsure about what
words mean, we pay
more attention to the
non-verbals.

3.2: How to listen & respond

Communication Traffic Lights

STOP
(Setting & ask)

LISTEN
(actively)

Cues
A verbal or non verbal hint which suggests an underlying
unpleasant emotion and would need clarification from the
Del Piccolo et al, 2006
health provider
Hints at feelings: Im a bit unsure about that.. it was odd
Emphasis: It was awfulthere is no light in the tunnel right
now
Repetition: He lost his job, he lost his job or it was cancer
- he said it was cancer

Examples of non-verbal cues

Eye contact
Anxiety
Not sleeping
Fidgeting
Lack of concentration
Appearing to withdraw and become less talkative
Facial expression
Reluctance to join in conversations
Reluctance to socialise with others
Inappropriate humour
Loss of appetite
Crying

3.3 What makes a

conversation difficult?
Fear: both of the person asking the question & the
person being asked the question
Different (& maybe differing) beliefs of both people
Lack of skills or confidence
Workplace/environment

If asked a difficult question

Clarify if you have understood the question correctly
Acknowledge the importance of the question
Is this a question you feel confident to answer? Yes/No
Is this a question you are qualified to answer? Yes/No
If answer is Yes to both questions:
1) Ask what they already understand about the issue
2) Check that they still want to proceed
3) Continue conversation using skills previously discussed
If answer is No to one or both questions:
1) Acknowledge that you are neither confident &/or qualified
to answer the question
2) Confirm who will be contacted to address the issue

Possible emotional responses:

Anger & Frustration

Loss of control

Denial

Loss of identity

Depression

Distress Exhaustion & Fatigue

Acceptance

Fear & Confusion

Bargaining

Sadness

Withdrawn

Guilt

Relief

Inadequate / helpless

Rehearsals of scenario
One person is Jim
One person is Jo, Rehabilitation assistant
One person to be the observer and complete
feedback chart (provided).
This is a rehearsal
We are here to help
If stuck put up your hand and we will come and
help you manage the situation

Learning Outcome: 4
Know how to access the range of support services
available to individuals & others. Task 7
Produce a poster, leaflet, hand out or power point
presentation addressing assessment criteria (below)
Individually or as a group (maximum of 4 per group)
(N.B. Need to identify who has done which work?)
4.1 Range of support services and facilities available to
EOLC service users and their families/carers
4.2 Key people in the multidisciplinary end of life care team
and how to contact them
4.3 Barriers that individuals might face when accessing
EOLC
4.4 Suggested ways of minimising those barriers

4.1
Daily nursing and
medical issues
(During day & Out
of Hours)

Social care

Family

Night sits with

service user

Spiritual/Religious
support
Psychological Care
& Counselling
Others..

Nurse Specialists

Advice on benefits
etc.

Service
User

Bereavement
Support
Care after Death

Hospice: In-patient, hospice at home, day therapy

Key people who may be involved within

a multi-disciplinary EOLC team
Multi-disciplinary teamwhere..
..health & social care professionals work
together to support people with complex
care needs (NHS England, 2014)

Representatives
from Faith Groups

Physiotherapist

Telephone
support nurse

Clinical Nurse
Social worker
Specialists (Macmillan
Nurse)
Occupational
Chaplain
therapist
Clinical
psychologist
Palliative
Care Nurse
Consultant

Pharmacist

Palliative Care
Consultant

DN

GP
Hospice at home
Administrators

Bereavement Support

General Practitioner with

Special Interest in EOLC

4.1

GP & District Nurse:

In & Out of Hours

Spiritual/Religious
support:
- Hospice
- Religious groups
- Spiritual care other
than religious
Others including
Community Matron etc.
Advice: Citizens Advice
etc.

Family

Service
User

Bereavement Support:
CRUSE, Hospice, GP
service
Social care:
STS&R Teams, Dom
Care, Care Homes
Nurse Specialist
- Macmillan Nurse
- Hospital Team
Marie Curie Nurses
Undertakers

Hospice: In-patient, hospice at home, day therapy,

Access to counsellors, bereavement support, physio, OT,
complementary therapies, lympoedema specialist

Specialist Palliative Care

Contact details - advice and support
Single Point of Access (SPA)
Community & Hospice Referrals
& Immediate advice:
(Base: Thames Hospice Windsor
Site)
Monday Friday: 08.30-1630
hours

Tel: 01753 848 925

Fax: 01753 867 861

Via: BHFT Health Hub:

Community Macmillan Team
Weekend - Saturday / Sunday /
Bank Holidays: 0830-1600 hours

Tel:
Fax:

0300 365 1234

0300 365 0400

References:

Dying Matters http://dyingmatters.org/

www.endoflifecareambitions.org.uk
End of Life Care Strategy (2008):
https://www.gov.uk/government/uploads/system/uploads/attachment_data/fi
le/136431/End_of_life_strategy.pdf
Guidance for staff Responsible for care after death
http://www.nhsiq.nhs.uk/media/2426968/care_after_death___guidance.pdf
Leadership Alliance for the Care of Dying People (LACDP)
http://www.england.nhs.uk/ourwork/qual-clin-lead/lac
Mental Capacity Act (2005) On-line:
http://www.legislation.gov.uk/ukpga/2005/9/contents
NHS Improving Quality http://www.nhsiq.nhs.uk/
DNACPR, ACP information etc. http://tvscn.nhs.uk/domains/end-lifecare/dnacpr-do-not-attempt-cardiopulmonary-resuscitation/
Skills for Care (2014)
http://www.skillsforcare.org.uk/Document-library/Skills/Selfcare/Commoncoreprinciples.pdf