Welcome to the End of Life Programme Workbook for:

Understand How to Work in End of Life Care

Unit Reference number: A/503/8085
This Workbook is designed to supplement the learning from the face to face taught sessions,
helping to link classroom learning to practice and to support learning in the workplace.
When you are working through the activities in this Workbook please do remember that you
will need to be able to show evidence that you have achieved the Learning Outcome for
each section.
Each activity will take different lengths of time - everyone works & learns at different rates;
the more time you spend on an activity the more you are likely to learn.
There are a range of activities in this Workbook:
1 Those that involve looking at policy or theory & applying them to your workplace.
2 E-learning activities.
3 Reflective accounts, when you write about the care you have given to a service user.
4 Producing leaflets / posters
Reflection:
When you are writing a reflection about the care you have given to a service user please use
I when describing what you did. Also, remember to ensure the service users anonymity by
using only their initials; you might be asked to reflect on when you have discussed
advanced care planning with a service user:
When I was helping Mr P with his personal care he started talking to me about his
neighbour Mrs J who had recently been admitted to hospital and had died there. He said
that he hoped he would never have to go back to hospital. As he was talking openly about
this I asked him what he would like to happen if he became less well? Mr P said that he
would really like to stay at home. I asked him if he had talked to anyone else about this or if
he had written it down? Mr P said he had not and was only thinking about it because of Mrs
J. I asked him if he would like to talk about this before I left, he said yes he would.
If you are asked to write a reflection but have do not have anything to reflect on as
this is your first experience with End of Life Care, please write a 'candidate statement'
this means writing 'I would' in place of 'I was'
You may like to share some of the information you gain from this Workbook with colleagues
or to create a resource file for your workplace. Please feel free to telephone or email me if
you need any support or guidance as you work thorough these activities.
Good Luck!
Joy Baker
Course Lead (Health & Social Care) Apprenticeship and Workforce Development
Bracknell & Wokingham College
E-mail: joy.baker@bracknell.ac.uk.
Liz Rankin. End of Life Care Facilitator
Berkshire Healthcare NHS Foundation Trust (BHFT)
E-mail: liz.rankin@berkshire.nhs.uk Tel: 07789504568
(Version 2: 20th October 2015)

Know about different perspectives on death and dying

To be able to support and care for people at the end of their life it is important to be aware
that everyone will have different views, beliefs and values. We all have a vast range of past
experiences that affect the choices and judgements we make. This may be as a result of
direct personal experience; if we felt we had poor care in hospital we may be reluctant to be
re-admitted. However, even if we have no personal experiences to draw on we might have
more generalised beliefs such as hospices only care for people who are dying. These
personal values can be influenced by others including family members, friends, healthcare
professionals and other service users. It is important where possible to find out what the
service user wants rather than relying totally on family members.
Factors that affect our own views on death and dying.
Health and Social Care professionals can have a great deal of influence on the decisions our
service users make. While we may not openly express our own opinions we do give subtle
clues about our views and beliefs, even though we are often not conscious of doing so; this
can be because of our own past experiences or beliefs or it can be influenced by the culture
of where we work.
For example, if we have heard of many people having had a bad experience when dying in
hospital we may try to encourage the service user to refuse admission to hospital or try to
influence their family. On the other hand, if we believe that people with little family support
should not be cared for in their own home, either because we believe they should not die
alone or that their family would not cope, we may put subtle pressure on them to be
admitted, suggesting that hospital may provide the best care.

Task 1: Own views on death and dying

(1.2, 1.3) Having read the information above, take some time to identify what has
happened in your life to influence how you think about death and dying.
Answer questions below:
(1.2) Identify what influenced your own views and why?
(1.3) Have your views ever affected the care you have given to a service user, if so
please describe in what way it influenced that care?

1.2 My own views are influenced as like other people by culture, the place where I
was born, events in my family, professional and personal development, religious and
spiritual believes, etc.. Thanks to God I didnt have traumatic moments in past,
1.3 As a nurse I prefer to be professional to respect the policy, law, etc. my opinion or
advice I prefer to keep to myself. End of life is a delicate period even if you know the
residents or their family very well them reaction can be different in that moments and
they should take decisions without being influenced by me.

As a nurse you have to be there to provide the best care, physical and psychological
support for the residents and for their families, to liaise with the family, GP or other
entity, to ensure their wishes, beliefs and the best interest of residents is respected.

Task 2: Reflective Account.

Identify a service user (or more than one) you have supported at the end of
their life within the Short Term Support and Rehabilitation Team or other place
of work.
Briefly list their main history (age, what was wrong with them, family/ carers support
if relevant, how unwell they were) (See Assessment guidance: Appendix 3.
Then describe:
(1.1) Those factors that influenced the service users views on death and dying
(Social, Emotional, Cultural, Religious, Spiritual, Psychological)
(1.3) How these factors influenced the care they requested and the care they
received
(1.4) Whether the attitudes of other people influenced the service users choices
regarding their care and in what way (i.e. family; friends; GPs; Nurses; Carers;
Health Professionals)
(3.1) In what way and why did the service users priorities or choices regarding
their care change over time?
(3.1) How did the service users ability to communicate their priorities and
choices change over time?
(2.2) How did you ensure the dignity of the service user was maintained? Why is
this important?
(2.3) How did you maintain the comfort and well-being of the service user?
Having reflected on all of the above do you think that the service user/s
received the care they wished for at the end of their life, if not what if anything
could have been done to improve their care?
J.W 93 years old
Admission date October 2014
Medical condition Parkinson diseases, Dementia, DNR in place
Family wife and two children
His medical conditions deteriorated gradually
Closely monitored - on fluid chart diet and fluid intake reduced on nutritional
supplements also on weekly weight chart and GP observation for underweight
conditions
In last month he develop a chest infection that aggravated his condition

Seen by GP and out of hours doctor on antibiotics his medication condition didnt
improve after 3 -4 days the GP, nurse and his family decided to dont send him in the
hospital even if his condition worsen because can be more traumatic and also
decided to keep him comfortable, free of pain on end of life care plan.
The resident due to his condition was unable to communicate his feelings or needs
he was made comfortable which there were no signs of distress or pain but refused
to drink and eat.
The family was all the time near him giving emotional support.
The staffs ensure emotional and professional support to the resident and his family.
Nursing supervision 24 hours
In last three years I worked with people with Dementia or other mental diseases in
Nursing Home, most of the time they are not conscious about dying or death or if
they are conscious they have the difficulty to communicate, so most of the time the
decisions in EOL care are taken by family, GP, nurse, home manager and other
entities implicated in resident care and in his best interest.
The care staff will indentify the needs of resident (assessment, care plan, review)
and will ensure that the resident will receive the best care and his best interest will
be the rule of any decision made for him at all times.
Usually when a resident was indentify as EOL care, the nurse in charge will inform
the GP, home manager, family, social worker and other entity if necessary together
will take the next steps of EOL process (what are the residents needs, what family
wish, are all this in resident best interest) if the family or resident have not an
advance care plane they will be counselled to do, the rules of every decision will be
the best interest of resident, also primordial points in EOL care are the resident
should be comfortable and free of pain, dignity and privacy should be respected at all
moments.

Task 3: End of Life Care (EOLC), The End of Life Care Pathway &
Care After Death (Appendix 2)
(2.1)

Identify the aims and principles of end of life care. In order to do this you can
explain what they are or you can represent it another way e.g. postcard, painting,
collage, video clip etc. If you use a postcard etc. include a brief explanation with
attachment.

(2.4)

Identify a service user you have cared for and consider to what extent care was
delivered using the stages of the End of Life Care Pathway (Appendix 2, figure 3).

(2.6)

Step 6 of the End of Life Care Pathway addresses Care after death. Please
define what is meant by local and national policy and guidance for care after
death.

(Click below & complete answers. Identify each answer with its appropriate number,
2.1, 2.4 & 2.6 etc.)

2.1 The aims and principles of end of life care

communicati
on

care after
death

assesmen
t, care
plan,
review ,
advance
care plan

care in
the last
days of
life

coordonat
ion of
care (GP,
nurse,
etc.)
delivery
of high
quality
services
in diffrent
settings

2.4 Care home is a controlled environment where the residents are closely
monitored all times and the care including the EOL care is given following the
national and care home procedure, under medical supervision, in base of law, in
respect of dignity and privacy and in the best interest of patient.
In care home any resident is closely monitored in case his medical condition change
the nurse will follow the procedures (inform the GP; out of hours doctor, family,
send the resident in hospital or EOL care) exceptions only in case of hart attach or
accident when cant be prevent.

2.6 The guidelines have been developed by the National Palliative Care Nurse
Consultants Group and undertaken in partnership with the NHS National End of Life
Care Programme (NEOLCP). They were created in response to the lack of training
and guidance for the profession on caring for patients after death.

Guidance is given on a broad range of issues relating to death, including:

Honouring the spiritual and cultural wishes of the deceased person and their
family/carers

Ensuring that the deceased and their family/carers have their privacy and
dignity respected at all times

Honouring peoples wishes for organ and tissue donation

Ensuring the health and safety of everyone who comes into contact with the
body

Ensuring that if the death is being referred to the coroner no action is taken
which might impede establishing the cause of death

Ensuring correct certification procedures have been followed

Task 4: Principles of Advance Care Planning

(2.5) A service user would like to write an Advance Care Plan (ACP) but does not know how
to do so. What does she/he need to understand about Advance Care Planning before writing
one (i.e. what are the principles of Advance Care Planning)?
(Click below & complete answer)

2.5 Service users should to understand that a advance care plan is create as a
instrument that cover an individual wishes, beliefs and values about future care to
guide future best interest decisions in the event an individual has lost capacity to
make decisions.
Also Advance Care Planning help the resident and carers understand what is
important for him and enable the views and wishes to continue to be part of the
decision making process in the event that you cannot make decisions and if he is
happy for professionals to make decision on his behalf with the support of people
that know him.

Ensure that resident priorities will be considered and respected as a guiding

principle. In case the feelings and priorities may change over time he can change
what he has written and also to review regularly.

Task 5: Communication in End of Life Care

Identify a service user &/or family you have helped care for at end of life.
(3.2) Describe what your role was in responding to any key questions and cues that arose
during conversations
(3.3)

Were you asked any difficult questions and how did you respond?

(3.4)

If the service user, their family or colleagues responded emotionally to difficult

situations, what strategies did you use to deal with these?

(Click below & complete answers. Identify each answer with its appropriate number,
3.2, 3.3 & 3.4)

3.2, 3.3, 3.4

It is a difficult question because everyone is different, every case is different there is
not a recipe and sometimes there is not an answer sometimes I tell we will do
(because we are working in team all time) everything is possible in his case and we
will give all the necessary support and care.
(But also we know the life is this, we came and we need to go, everyone of us, no
exception, sometimes only an allusion of this truth make us to feel in peace and to
accept more easily the reality).
Usually our residents are to an age when to die is a normal fact and when due to
medical conditions everyone knows to live is not easy, the family is conscious also
about this fact and in that moment to be in silent is very important and means more
than one thousand words but also the following principles are very important:
to treat with compassion, competence, care,
to treat the resident and his family with respect and to provide the best
services
respect of dignity and privacy of resident and family
to offer medical, physical and psychological support in your job parameters
and to provide advance and specialist support when necessary (psychologist,
priest, GP, psychiatrist, legal etc.)
medications to be changed in base of resident current medical needs,
assessment of pain and pain management, regularly GP review, etc.
hydration and nutritional assessment needs, management, support.
to ensure wellbeing, comfort and free of pain at all times;
all decisions should be taken only in the best interest of residents;
good communication between cares, nurse, GP, family, etc.
religious and spiritual needs

Task 6: Data Protection Act & Confidentiality in the workplace

(3.5)

Read your workplace policy on confidentiality and discuss it with your

manager &/or your colleagues.
The Data Protection Act controls how your personal information is used by
organisations, businesses or the government. Follow this link:
https://www.gov.uk/data-protection/the-data-protection-act and briefly explain what
the main data protection principles are. Also, explain why confidentiality is so
important within your own workplace.

The Data Protection Act controls how our personal information is used by
organisations, businesses or the government. Everyone responsible for using data
has to follow strict rules called data protection principles. They must make sure the
information is:

used fairly and lawfully

used for limited, specifically stated purposes

used 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 European Economic Area without adequate

protection
There is stronger legal protection for more sensitive information, such as:
ethnic background

political opinions

religious beliefs

health

sexual health

criminal records
The confidentiality in workplace is so important for avoid that intentionally or for
mistake information about someone is shared and used without respect of Data
Protection Act principles.

Task 7: Support services available

In order to update the team information you are to produce a poster, leaflet,
hand out or power point presentation addressing all of the following
assessment criteria (4.1, 4.2, 4.3 & 4.4).
You can complete this task individually or as a group (maximum of 4 per
group) but if a group exercise each student to be responsible for planning and
producing the evidence for at least one assessment criteria (4.1, 4.2, 4.3 & 4.4)
and the students work needs to be clearly identified.
(4.1) The range of support services and facilities available to EOLC service users
and their families/carers
(4.2) The key people who might be involved in the multidisciplinary end of life care
team and how to contact them
(4.3) Any barriers that individuals might face when accessing EOLC
(4.4) Suggested ways of minimising those barriers

4.1 EOL support for service user and family in Nursing Home

Care & Nursing care 24 hours

Continue GP, Social and Psychological support
Accommodation
Meals, Activities and Facilities
Spiritual /Religious support
Advice on benefits
Bereavement support
Care after death

4.2 Key people involved in the multidisciplinary EOL care team

Nurse, palliative care nurse, care workers

GP, Pharmacist, Social worker
Clinical Psychologist, Psychiatrist, Occupational therapist, Chaplain, other
specialist
Home Manager, Administrators
Bereavement support

4.3 Barriers when accessing EOLC:

Religious, Cultural, Language, Social, Ethnic, Financial, Age, etc.
4.4 I think is important to minimising the barrier non in last moment, in care home
usually we have a continue report with the family (sometimes daily) so this barriers
are at a low level.

Appendix 1
Definitions of EOLC, Palliative Care, Specialist Palliative Care, Terminal care:

Appendix: 1
Below are terms used by professionals but which can be very confusing to service
users and their families, who do not always understand what they mean.
End of Life Care (EOLC)
.includes .those individuals likely to die within the next 12 months, including people
for whom death is imminent (expected within a few days or hours) and those with
a) advanced, progressive, incurable conditions b) general frailty & co-existing conditions that
mean they are expected to die within 12 months c) existing conditions if they are at risk of
dying from a sudden acute crisis in their condition d) lifethreatening acute conditions
caused by a sudden catastrophic events.
(Leadership Alliance for the Care of Dying People, 2014)
http://www.england.nhs.uk/ourwork/qual-clin-lead/lac/
Palliative Care
.. 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)
N.B. Palliative care can apply to any patient irrespective of diagnoses.
General(ist) Palliative Care
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)
Providing general palliative care is part of many health and social care professionals jobs.
(https://www.mariecurie.org.uk/help/terminal-illness/diagnosed/palliative-care-end-of-lifecare#generalcare)
Specialist Palliative Care (SPC)
..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 multi-professional team who have undergone recognised specialist
training..referral to SPC is dependent on the complexity of the patients needs and the
skills of the referrer (2012, Association of Palliative Medicine)
Specialist Palliative Care Professionals will address ..complex problems.physical,
psychological, social and spiritualwhich generalist services.cannot always deal with
effectively.(NICE, 2004)

10

Terminal care (A term used infrequently by professionals but may be heard)

is defined as "the management of patients with active and progressive disease for which
curative treatment is not possible or not appropriate and from which death can reasonably
be expected" within a timeframe of days or months.
(SCIE, 2005 Accessed: http://www.scie.org.uk/publications/briefings/briefing10/

Appendix 2
Aims, Principles and Policies of End of Life Care.

The End of Life Care Strategy was developed as part of the Darzi Review and was
launched in 2008; the aim was to promote high quality end of life care in any setting and for
any condition. As a result further strategies and reports were produced, as well as new care
processes, indicators of quality and funding systems. The strategy identified the key stages
of the local end of life care pathway, see figure 3 (below).

11

By 2015 the National Palliative and End of Life Care Partnership

(www.endoflifecareambitions.org.uk) had recognised that with the increased emphasis on
local decision making in palliative and end of life care provision, local organisations such
as Clinical Commissioning Groups (CCGs*), local authorities etc. needed to be responsible
for the leading and delivery of Palliative and EOLC. The partnership identified an
overarching vision and the six ambitions required to make this happen.
The 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)
While the six ambitions or principles of how care should be delivered to those nearing
death at a local level are as follows:
1) Each person is seen as an individual
2) Each person gets fair access to care
3) Maximising comfort and well being
4) Care is coordinated
5) All staff are prepared to care
6) Each community is prepared to help
(*Clinical Commissioning Groups (CCGs) commission most of the hospital and community
NHS services in the local areas for which they are responsible. CCGs are made up of GPs
and other health professionals)

12

Appendix 3
Unit I guidance
Appendix 3 (Task 1)
Unit 1: Understand How to Work in End of Life Care
Unit reference number: A/503/8085
QCF level: 2 Credit value: 3
Guided learning hours: 28

Unit aim
The aim of this unit is to assess the learners knowledge and understanding of the
perspectives, aims, principles and policies involved when working in end of life care.
The unit also looks at how to access support services.

13

Unit introduction
This unit gives learners the knowledge and understanding they need to be able to
provide appropriate care for individuals nearing the end of life.
Learners will examine the different perspectives on death and dying, including the
factors that may affect an individuals views on the topic. Learners will also consider
how the attitudes of others may affect an individuals choices in relation to death and
dying.
The unit introduces learners to the aims, principles and policies that currently
underpin end of life care, and the factors that affect communication with individuals,
their families and significant others.
Learners will investigate the range of support services available and consider the
barriers to accessing these services. They will consider ways of minimising these
barriers.

Assessment guidance
This unit must be assessed in accordance with Skills for Care and Development's
QCF Assessment Principles.
For AC1.1, factors may include:

social

cultural

religious

spiritual

psychological emotional.

For AC1.4, others may include:

care or support staff

colleagues

managers

non direct care or support staff

carers

families

visitors

volunteers

health professionals

other organisations

social workers

occupational therapists

14

GPs

speech and language therapists

physiotherapists

pharmacists

nurses

Macmillan Nurses

independent mental capacity advocates clinical nurse specialists.

For AC4.1, support services and facilities may include:

pastoral services

other professionals

Citizens Advice Bureau

self help organisations hospices.

Essential resources
There are no special resources needed for this unit.

Learning outcome
1.

Know different
perspectives on death
and dying

Assessment Criteria
1.1

Outline the factors that can affect an

individuals views on death and dying

Task 2 Refl
account

1.2

Outline the factors that can affect own views on

death and dying
Outline how the factors relating to views on death
and dying can impact on practice
Define how the attitudes of others may influence
an individuals choices around death and dying
Assessment Criteria
Explain the aims and
principles of end of life care

Task 1 - Ques

2.2

Explain why it is important to support an individual

in a way that promotes their
dignity

Task 2 Refle
Account

2.3

Describe the importance of maintaining comfort

and wellbeing in end of life care

Task 2 Refle
Account

2.4

Explain the stages of the local end of life care

pathway
Describe the principles of advance care planning
Define local and national policy and guidance for

Task 6 - Ques

1.3
1.4
2

Learning outcome
Understand the aims,
principles and policies of
end of life care

Eviden
Locatio

2.1

2.5
2.6

15

Task 2 Refle
account
Task 2 Refle
account
Evidence
Task 6 Que

Task 3- Ques
Task 6 Que

Learning Outcome
Understand factors
regarding communication in
End of Life Care

3.1

3.2
3.3
3.4
3.5

Learning Outcome
4

Know how to access the

range of support services
available to individuals and
others

care after death

Assessment Criteria
Explain how an individuals priorities and the ability
to communicate may vary over
time

Evidence
Task 2 Refle
Account

Explain your role in responding to key questions

and cues from individuals
and others regarding their end of life experience
Describe how you might respond to difficult
questions from individuals and others
Outline strategies to manage emotional responses
from individuals
and others
Explain the importance of sharing appropriate
information according to the
principles and local policy on confidentiality and
data protection

Task 4 Que

Task 4 - Ques

Task 4 - Ques

Task 5 Writt
Piece

Assessment Criteria

Evidence

4.1

Identify the range of support services and

facilities available to an individual and others

Task 7 Infor
Leaflet

4.2

Identify the key people who may be involved within

a multi-disciplinary end of life care team
Identify the potential barriers an individual may face
when accessing end of
life care
Suggest ways to minimise the barriers an individual
may face when accessing
end of life care

Task 7 Infor
Leaflet
Task 7 Infor
Leaflet

4.3
4.4

16

Task 7- Inform
Leaflet