Palliative Care Toolkit

Trainer’s Manual By Dr Vicky Lavy

About Help the Hospices
Help the Hospices is the leading charity supporting hospice care throughout the UK.
Help the Hospices also has an international programme that supports the development
of hospice and palliative care worldwide, particularly in developing countries.
About the Worldwide Palliative Care Alliance
The Worldwide Palliative Care Alliance (WPCA) is a network of national and regional
hospice and palliative care organisations from around the world. The WPCA works to
develop hospice and palliative care services globally.
Vision – A world with universal access to affordable, high quality palliative care.
Mission – To promote universal access to affordable quality palliative care through the
support of regional and national hospice and palliative care organisations.
While great care has been taken to ensure the accuracy of information contained in this
publication, it is necessarily of a general nature and Help the Hospices cannot accept
legal responsibility for any errors or omissions that may occur. The publishers and
authors make no representation, express or implied, with regard to the accuracy of the
information contained in this publication. The views expressed in this publication may
not necessarily be those of Help the Hospices. Specific advice should be sought from
professional advisers for specific situations.
The materials in this guide may be reproduced for non-commercial use by hospices,
other palliative care organisations and health workers, and the necessary copyright
permission have been sought and granted for this purpose. Copying for any other
purpose is strictly prohibited without the written consent of Help the Hospices.
The right of Vicky Lavy to be identified as the author of this work has been asserted by
her in accordance with the Copyright, Designs and Patents Act 1988.

© Vicky Lavy 2009

Published in 2009 by Help the Hospices. Registered Charity in England and Wales,
Help the Hospices no. 1014851. Company Limited by Guarantee registered in England
No. 2751549. Registered office: Hospice House, 34-44 Britannia Street, London,
WC1X 9JG, UK.
ACKNOWLEDGEMENTS
Author
Dr Vicky Lavy lived and worked in Malawi for 10 years where she set up Umodzi Palliative
Care for children. She designed Malawi’s first basic palliative care training course and was
involved in its subsequent development into a national training programme.
Editorial team
Dr Karilyn Collins spent six years working in palliative care in Tanzania. She founded
Muheza Hospice Care, the first independent NGO dedicated to palliative care in the
country, and has a special interest in palliative care in ARV programmes. She is a board
member of the Tanzania Palliative Care Association.
Gillian Chowns has combined a role as a specialist palliative care social worker with a
senior lecturer post in the School of Health and Social Care at Oxford Brookes University
during the past 10 years. She has lived and taught in Kenya for several periods and has
researched the impact of palliative care education on day-to-day practice in East and
Southern Africa.
Dr Mhoira Leng is a palliative care specialist with 18 years experience both in Scotland and
internationally. As founder and medical director of Cairdeas International Palliative Care
Trust, she has taught in different parts of India, in Malawi and Uganda. She is now Head of
Palliative Care at Makerere University and Mulago Hospital, Kampala.
Dr Charlie Bond is a consultant at Severn Hospice in the UK with an interest in the delivery
of palliative care in resource-poor settings. He has worked in several African countries
and has been involved in palliative care training in Malawi, Sierra Leone and China.
Ruth Wooldridge is a palliative care nurse who has lived and worked in India and Kenya
and is a co-founder of Nairobi Hospice and CanSupport in Delhi. She is a member of the
Help the Hospices International Palliative Care Reference Group and is currently involved
in starting palliative care in Rwanda.
Pilot course
The training material was piloted in Tanzania as part of the Muheza Hospice Care roll-out
programme for Tanga region in November 2008.
CONTENTS
ACKNOWLEDGEMENTS
INTRODUCTION. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .1
TeaChINg TeChNIqUes yOU CAN HELp OTHERS TO LEARN . . . . . . . . . . . . . . . . . . . . . . . .2
The TeaChINg mODUles explaINeD . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 17
mODUles
mODUle 1 WHAT IS pALLIATIVE CARE? . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 18
mODUle 2 yOU CAN DO pALLIATIVE CARE IN yOUR SETTING . . . . . . . . . . . . . . . . . . . . . . . 26
mODUle 3 yOU CAN IMpROVE yOUR COMMUNICATION SKILLS . . . . . . . . . . . . . . . . . . . . 30
mODUle 4 yOU CAN BREAK BAD NEWS WELL . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 36
mODUle 5 yOU CAN GIVE SpIRITUAL CARE . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 41
mODUle 6 yOU CAN GIVE BEREAVEMENT SUppORT. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 47
mODUle 7 yOU CAN ASSESS pAIN AND OTHER pROBLEMS . . . . . . . . . . . . . . . . . . . . . . . . . 52
mODUle 8 yOU CAN TREAT, CARE AND pRESCRIBE. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 58
mODUle 9 yOU CAN CONTROL pAIN . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 63
mODUle 10 yOU CAN USE MORpHINE . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 67
mODUle 11 yOU CAN HELp DIffERENT SyMpTOMS 1 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 73
mODUle 12 yOU CAN GIVE END Of LIfE CARE. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 77
mODUle 13 yOU CAN HELp CHILDREN AND fAMILIES . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 83
mODUle 14 yOU CAN HELp DIffERENT SyMpTOMS 2 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 89
mODUle 15 yOU CAN TELL OTHERS. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 93
mODUle 16 yOU CAN BUILD A TEAM . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 97
mODUle 17 CONfIDENTIALITy . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 102
aDDITIONal sessIONs . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 106
INTRODUCTORy SESSION . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 106
fINAL SESSION . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 108
ASSESSMENTS fOR THE END Of THE COURSE . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 111
ResOURCes
ResOURCe 1 ROLE pLAy SCENARIOS fOR COMMUNICATION SKILLS . . . . . . . . . . . . . . . 112
ResOURCe 2 SCENARIOS fOR BREAKING BAD NEWS . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 113
ResOURCe 3 SCENARIOS fOR HOLISTIC HISTORIES . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 114
ResOURCe 4 BENEfIT AND BURDEN. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 116
ResOURCe 5 pRESCRIpTIONS TO USE WITH TOOL 6 Of THE TOOLKIT. . . . . . . . . . . . . . 117
ResOURCe 6 QUIz ON THE ANALGESIC LADDER. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 118
ResOURCe 7 MORpHINE CALCULATIONS. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 120
ResOURCe 7a ANSWERS TO MORpHINE CALCULATIONS . . . . . . . . . . . . . . . . . . . . . . . . . 122
ResOURCe 8 SCENARIOS fOR SyMpTOM CONTROL 1 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 124
ResOURCe 9 SCENARIOS fOR END Of LIfE CARE . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 126
ResOURCe 10 DIffICULT QUESTIONS . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 127
ResOURCe 11 SCENARIOS fOR COMMUNICATING WITH CHILDREN . . . . . . . . . . . . . . . 128
ResOURCe 12 SCENARIOS fOR SyMpTOM CONTROL 2 . . . . . . . . . . . . . . . . . . . . . . . . . . . . 129
ResOURCe 13 COURSE EVALUATION . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 131
ResOURCe 14 END Of COURSE ASSESSMENT IN pALLIATIVE CARE . . . . . . . . . . . . . . . . 132
ResOURCe 15 SCENARIOS fOR CONfIDENTIALITy. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 138
 INTRODUCTION
What is this manual?
This manual is a companion to the Palliative Care Toolkit. It contains structured
teaching modules and resources which can be used to help others explore and learn
the material contained in the Toolkit. It includes ideas and suggestions for those who
are training and information about teaching methods, but it is not a comprehensive
‘training of trainers’ manual.
The modules can be used as single sessions on specific topics, or put together to create
courses. Courses can be made to suit different audiences by choosing the modules
which are relevant in each situation. Some suggestions for structuring courses and
programmes are given on pages 15–16 of this manual.
The manual is meant to be a guide and can be adapted to suit your own situation. You
may already be an experienced teacher and can use that experience and skill, bringing
in your own stories and case studies.
Who is it for?
It is written for those with some experience in palliative care who want to help others
learn too. Trainers will usually be health professionals but some of the material could
be taught by those in allied professions, eg social workers, counsellors and others.
Using the manual:
l Intended for teaching a group, ideally between 10–25 people.
l Must be used alongside the Toolkit because all the learning material is in the Toolkit
and is not repeated in the manual.
l The manual is for the trainer, not the participants.
l If possible, each participant should have a copy of the Toolkit to use during the
session/course and to keep afterwards.
l If this is not possible, or you are teaching an isolated session, the pages needed
can be photocopied or downloaded and given out as handouts. The Toolkit
is available as a book, a CD ROM and online at www.helpthehospices.org.uk/
international/toolkit.
l The first section, ‘You can help others to learn’, is not part of the teaching material,
but is an introduction to adult learning for trainers and explains how to use the
different teaching methods in the manual.

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 TeaChINg TeChNIqUes yOU CAN HELp
OTHERS TO LEARN
Teaching is more than just passing on information. It is also about getting people
interested and excited about what they are learning and about changing attitudes
and building skills. It is about encouraging people as they learn and drawing out the
knowledge and experience they already have. It is about building a trust relationship with
those who wish to learn and helping people to continue learning even after the formal
training session or course has finished.
This may sound a daunting task but this manual has been written to help those who want
to help others learn about palliative care, using the Toolkit as a resource.
How do adults learn?
part of being an effective teacher involves understanding how adults learn. They have
different needs and requirements to children and teenagers:
l Adults already have a foundation of knowledge and experience from their previous
education, their work and their life experiences. Teaching involves recognising and
drawing out this knowledge and connecting it to what is being taught. Members of
the group may learn as much from each other as from the teacher, who is also a
lifelong learner.
l Adults are self-directed and take responsibility for their learning. They are used to
making decisions in other areas of their lives, so need to be involved in setting goals
for their learning and in the learning process itself. Teachers act as trainers, guiding
participants to their own knowledge as well as supplying them with facts. Participants
take responsibility for presentations and leading group discussions.
l Adults can feel vulnerable and anxious about revealing their lack of knowledge in new
areas. They need to be treated with respect. They should feel free to say when and how
they are having problems, and need encouragement.
l Adults want to use their knowledge in their work. They may not be interested in
gaining knowledge for its own sake, but want to learn things that will be useful in their
work. Teaching must be relevant and practical.
l Adults are busy people. They have many responsibilities that they must balance with
the demands of learning. Time must be used effectively.
Different learning styles
Different people learn in different ways. Many of us received most of our training through
lectures, where learning takes place by listening, but this is not the way that everyone
learns best. Some people remember visual images better than spoken information and
find pictures and diagrams helpful. Some people learn best by discussing questions with
a group and working together to solve a problem. Others learn by practising skills and
remember the things they have actually done, such as examining a patient or role-playing
communication skills. Some learn best by looking back and reflecting on events and
situations they have experienced.

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 Different people can learn by:
l watching
l listening
l thinking
l doing
l feeling.

?
WHAT KIND Of LEARNER ARE yOU?
THINK Of SOMETHING yOU HAVE LEARNT – pERHApS RIDING A BICyCLE OR
LEARNING A LANGUAGE. WHAT HELpED yOU TO LEARN? THINK ABOUT yOUR
fEELINGS, THE CIRCUMSTANCES, THE TEACHER, yOUR MOTIVATION, THE BENEfITS
Of LEARNING THIS SKILL AND THE KEy STEpS ALONG THE WAy.

In any group there will be people with different learning styles. In the same way, different
subjects require different teaching methods – learning facts, practising skills and
understanding new concepts require different kinds of teaching.
It is good to use a variety of teaching styles and methods to help different learners and
teach different subjects. Several methods can be used within one teaching session.

What I discover, I use

What I hear, I forget
What I see, I remember
What I do, I understand
Chinese proverb

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 What makes a good teacher?
Teaching involves different skills. Some are related to the content of what is taught,
but equally important is the way the content is put across, which is related to the
interpersonal skills of the teacher.
Important skills are:
l preparation of subject matter
l planning sessions carefully
l communication skills
l managing the group dynamics
l ability to adapt to the learners’ needs and respond to what participants bring to
the session
l nurturing skills to encourage and support students as they learn.

?
WHO WAS THE BEST TEACHER yOU EVER HAD?
WHAT WAS HE/SHE LIKE?
WHAT WERE THE THINGS WHICH MADE HIM/HER AN EffECTIVE TEACHER?
NOW THINK ABOUT A BAD TEACHER.
WHAT MADE IT DIffICULT TO LEARN fROM HIM/HER?
WHAT DID OTHER STUDENTS THINK?

Different teaching methods

?
LIST THE DIffERENT TEACHING METHODS yOU HAVE ExpERIENCED OR USED.
WHICH ONES DO yOU fIND HELpfUL?
ARE THERE SOME METHODS WHICH ARE USEfUL IN pARTICULAR SETTINGS?

Hopefully your list will have included some of the methods we describe below. You may
have included others as well; ours is not an exhaustive list. It is good to try new ways of
doing things but it is more important to use the methods well than to use all
of them.

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 Question and answer
The trainer asks questions and participants answer by:
l calling out answers
l noting down their answers on paper and giving themselves a score
l in a team quiz, or in pairs.
This can be useful for finding out how much participants know, or for reviewing what has
been learned in a previous session.
l Encourage less vocal members to join in by saying “let’s hear from someone who
hasn’t spoken yet” or “what about someone on this side of the room?”
l Be encouraging when people contribute, recognising the value of what they have
said, but be clear if an answer is completely wrong so that the rest of the group is not
misled, eg “That’s an interesting suggestion but in fact the answer is…” or get others to
comment, eg “That’s an interesting answer, what do others think?”
l Giving out small prizes (eg sweets) for correct answers can be a light-hearted way of
making it fun.
The questions can be used to lead into a discussion, with the trainer inviting others to
comment on the answers and share their experiences and opinions. The trainer needs to
guide the discussion and prevent it straying from the topic.
Buzz groups
Participants turn to those sitting next to them (groups of two or three) and discuss a
question briefly, for two to five minutes. At the end of the time there can be feedback
to the whole group by calling out. It is not always necessary to hear from every buzz
group. This is a non-threatening way of getting people involved as they are usually
much more ready to speak out in the whole group if they have already discussed it with
their neighbours. If you are teaching a smaller group who know each other well and are
interactive, buzz groups may not be needed.
If you are running a course over several days, encourage people to sit in different places
each day so that they have different ‘buzz group partners’.
Lecture/presentation
?
Lectures can impart a lot of information to HOW MUCH CAN yOU REMEMBER Of
a lot of people at one time, but much of this THE LECTURES yOU HEARD?
information may be forgotten.
ONE STUDy SHOWED THAT STUDENTS’
RECALL AT ONE WEEK WAS 20%.

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 When teaching the Toolkit, all the factual information the participants need is contained
in the Toolkit which they should have with them throughout the course. Because of this,
the sessions do not use the lecture method a great deal. Instead, the participants should
be encouraged to turn to the relevant page of the Toolkit during the session. This brings
in visual learning as well as listening and it helps participants to become familiar with
using the Toolkit as a resource.
Lectures:
l can be a good way to impart factual information
l require thorough preparation by the presenter
l should be kept short or broken up with activities or discussion to prevent people from
becoming bored and ‘switching off’
l should not be used for an entire session. Participatory work is important
l can be enhanced by visual aids, eg overhead projector, PowerPoint
presentation, flipchart.
Visual aids
?
LIST THE VISUAL AIDS yOU HAVE SEEN BEING USED.
WHICH ONES DO yOU LIKE BEST AND WHy?

your list may include:

l flipchart
l overhead projector (OHp)
l PowerPoint presentation
l blackboard and chalk or whiteboard and pens.
All of these can help participants to focus and follow a lecture, and act as prompts for
the trainer, but they can be a distraction if they are not prepared well. Beware of relying
on visual aids which require electricity if the supply is erratic. You should either choose a
different way of presenting, or make sure you can still give your presentation without the
visual aids.
l Prepare well in advance.
l Writing must be large enough to be read easily from the back of the room.
l Do not put too much information on one slide/sheet/transparency. Try to use no more
than five or six lines of writing.

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 l Use brief headings and talk around them; avoid simply reading out your slides.
l Try to avoid giving someone else’s presentation without adapting it or putting in some
of your own material, otherwise it can sound very ‘second hand’.
l Pictures and diagrams can say a lot and are sometimes more memorable.

PowerPoint
l Looks very professional
l Can use pictures/diagrams/photos
l Can be used alongside other things, eg flipchart for interactive parts
of session
l Requires careful preparation
l Requires expensive equipment and electricity
l It is important to encourage participation otherwise students may simply
sit back and watch.

Flipchart
The flipchart is one of the most useful and adaptable visual aids. It is a large pad
of paper (poster size) which is put on a stand so that everyone can see it. If a
ready-made flipchart is not available, large pieces of paper stuck to the wall are
just as good.
l Sheets can be prepared in advance as visual aids for a presentation.
l Can be used during sessions to note down important points as they are
brought up by participants, very good for interactive teaching.
l Can be used by participants during group work.
l Sheets can be kept and displayed to remind participants later/the next day
of learning points – remember to bring something to fix them to the wall.
l Requires no electricity.
l Easily transportable.
l Try to get someone else (another trainer or a participant) to write while
you are teaching so that you can keep the discussion moving. Listening,
talking and writing at the same time usually leads to bad handwriting and
spelling mistakes.
l Make sure you have plenty of pens – these should be thick markers
if available.

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 Other sorts of visual aids include:
l pictures, eg postcards to pass around, or those in the Toolkit
l equipment, eg syringe, drug chart
l other objects to help people remember a point.
Small group discussion
Participants divide into smaller groups and discuss questions prepared in advance by the
trainer. These may be the same or different for each group. They could be around a case
study, or a problem to be solved, or a controversial issue.
l Give questions to each group on paper or write them on a board or flipchart so that
everyone is clear what they are being asked to discuss.
l Trainer (s) can move around the room and ‘drop in on’ the groups to help as necessary.
l Mix up the groups during the day so that participants work with different people. you
can do this by numbering people around the room using the number of groups you
want, then all those with number one form a group, those with number two form
another and so on.
Feeding back after group work
Always allow as much time for feedback as for the actual group work:
l Before they begin, suggest that groups appoint a spokesman who will take notes and
report back.
l It is sometimes helpful for a group to write their points on flipchart paper to present
when reporting back.
l The trainer asks each group to report back in turn. Encourage spokesmen not to
repeat what other groups have already said.
l If you are short of time, you can ask each group to choose the one thing they think is
most important.
l Do not always start with the same group.
l It may be useful for the trainer to note down the main points on the flipchart – if
possible, get someone to help with this so that you are not trying to write and facilitate
at the same time.
l Have a list of the main learning points ready so that you can add to the feedback if
important points have been missed, or put the list up for participants to compare with
their answers.

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 ‘The walking wall’ is an alternative to verbal reporting back – each group
puts their written reports on the wall and everyone walks around and reads.
They can ask each other questions as they go. This gets everyone moving
which can be helpful if people are tired. Afterwards there can be questions or
comments, perhaps picking out the common elements or the differences in
each group’s findings.

Brainstorm
This can be done in the whole group or in small groups. A question or problem is
given, then everyone calls out ideas and suggestions and they are all written down (eg
on flipchart or overhead projector) without criticism or discussion. At the end of the
brainstorm the list is reviewed and discussed.
Role play
Role play is an unrehearsed acting out of a real-life situation which can give insight into
the thoughts and feelings of those in that situation and allow participants to practise skills
such as history taking, breaking bad news etc.
l participants volunteer to do role play – trainers can also take part.
l A previously prepared or volunteered scenario is given to those doing the role play and
they are given a short time to ‘think themselves into’ their character.
l Make sure the scenario chosen reflects a real life situation for the participants, but
they should not undertake roles that are too close to their own experience, eg it would
be unwise for someone who has recently lost a family member to play the role of
someone who has been bereaved.
l The scenario is acted, the actors responding and reacting to each other as they
feel their character would do. They can use whatever language they are most
comfortable with.
l Actors can call for ‘time out’ if they are struggling.
l The rest of the group watch and observe, taking note of learning points.
l When the role play is over, each actor is invited to comment on:
– how they felt during the scenario
– what went well
– what could have been done differently.
l Those observing the role play are then invited to comment, remembering to give
positive feedback first and to be constructive with any criticism.
l Role play must be done in an atmosphere of mutual respect and confidentiality. Make
sure that those who play the acting roles are able to debrief and return to their usual
role afterwards.
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 Interactive role play (sometimes called ‘Goldfish bowl’)
This is a form of role play in which the observers can direct what happens. Volunteers
act out a scenario to the whole group and at certain points the facilitator will ‘freeze’
the action and ask the group what should happen next and then the actors try out
their suggestions. This shows that there may be different ways of doing things, and the
responsibility of ‘getting it right’ is on the whole group and not just the actors.
The facilitator asks questions such as:
l How do you imagine x is feeling right now? What should y do next?
l Has x explained this well? What else does he/she need to say?
l x has asked a question. What are the different ways y could answer? Let’s try them
each in turn and see which works best.
Different people can swap in to become an actor at any point:
l Let’s give x a break, who would like to take the role of the doctor/nurse/
counsellor now?
This type of role play keeps the whole class involved but needs good facilitating.
If the group is large it could be split if there are enough trainers to manage two groups.
It can be useful to start off with facilitators in one or more of the roles. If a facilitator
plays the health worker and does it badly, one of the participants can swap in and do
a better job.
Patient testimony
Sometimes it is very powerful to invite a patient or relative to your session. They can
tell their story, answer questions or even be interviewed by the facilitator or one of the
course participants.
Make sure you prepare the patient and group well and allow the patient to opt out if it
gets difficult. They may need a chance to debrief afterwards and of course confidentiality
is essential.
Story telling
Telling stories from real life is a powerful and memorable teaching tool. This will often be
a story about a patient or family, but it might be from outside the work context, eg stories
about the different ways people behave and react.
Reflection
Reflection involves learning from experiences, often interactions with patients but also
life experiences. A simple structure guides the reflective process, eg:
l describe the situation
l what went well

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 l what could have been better
l what would have allowed me to do this better (eg skill to be learned or practised,
knowledge required).
To start off it may be helpful to model this process, giving an example of your own work,
or even the way you facilitated the previous session.
Reflective learning can form part of a teaching session when time is given for participants
to reflect, perhaps writing down their thoughts which may or may not be shared with
others. It is also a useful skill to introduce because it is an excellent way for participants to
continue learning after formal teaching is over. Keeping a reflective diary of encounters
and events in our work is a useful way of learning from our experiences.
Practical experience
This might involve learning a particular skill such as measuring out and dispensing a drug,
or dressing a wound. The trainer should give a demonstration, making clear the different
steps involved. Then participants take turns to practise, either all together or in small
groups. As with role play, the participants are invited first to say what they did well and
what they should have done differently. Then other members of the group can be invited
to comment.
It might involve field visits to see patients in home-based settings, or seeing patients in
a clinic or hospital ward. Make it clear what you want the participants to do and ask them
to take notes of their experiences. Assignments might include taking a history from a
patient, making a problem list, interviewing patients or volunteers about their experiences
or observing how a clinic/programme runs. At the end of the trip participants come back
together and discuss:
l what they did/saw/heard
l what was good
l what was difficult
l what could have been done differently
l how they felt about the experience.
Ice breakers
An ice-breaker is a short, fun exercise used at the beginning of a session to make people
feel relaxed and to help them get to know each other a little. It gives the message that the
session is going to be interactive and encourages them to take part.
Examples are:
l Introduce yourself to your neighbour and tell them why you have come on this course,
what is your favourite food and what toothpaste you use.
l Tell your neighbour three things about yourself, two true and one false – they have to
guess which one is false.

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 l Discuss with your neighbour if you were an animal, what animal you would be
and why.
You can make up your own.
Energisers
These are brief exercises which give everyone a break from concentrating to be refreshed
and re-energised for the rest of the session. They can be put in half way through, to
keep people going, or used whenever the trainer notices that people are looking tired
or distracted. They are useful after lunch.
Examples are:
l Everyone stands up, turns around, stretches and runs on the spot for five seconds.
l Everyone moves around the room and greets five people.
l Everyone sings a song that most people know.
l Get the participants to stand up and “write” their names using their body.
You can make up many more.
Planning sessions
Careful planning is essential. A plan should include:
l aim of the session – topic to be covered
l learning objectives – what you want participants to know/understand by the end of
the session
l teaching methods to be used in the session
l timing of each part of the session.

Learning objectives
These are the key points that you want the participants to have learned by the
end of the session. Some educational models use ‘SMART’ to create objectives
that are clear and easily measurable:
specific
measurable
attainable
Realistic
Time bound
This is a helpful overview for preparation and encourages clarity. You may need
to be more flexible when the objective is exploring new concepts or changing
attitudes.

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 When planning group work, carefully prepare the assignments you will give to the groups,
eg discussion questions, case studies, role play scenarios. The resources at the end of the
manual provide material for group work – you may want to adapt them or write new ones
to make them relevant to your setting. It may be helpful to translate them into your local
language.
Think ahead about what you want them to find out or achieve from the group work. This
might involve writing a checklist of important points for yourself so that you can reinforce
them and make sure you bring in points which participants did not mention. Many
checklists are provided in the modules, which can be put on visual aids if desired.
Try to stick to the timing of your lesson plan. This will mean keeping a close eye on the
clock when you are talking, and being firm with participants when doing group work –
they must stop when the time is up, even if they have not finished the exercise. It is good
to give them a warning a few minutes before the end.
It can be frustrating to stop interesting discussions or leave out some stories or examples
you planned to include. However, if you do not stick to time, you will either miss whole
sections at the end of sessions, or overrun the session into a lunch or tea break.

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 Ten tips for interactive teaching and managing groups
l Try to learn the names of your students (unless the group is very large and it is a very
short, one-off session). Ask students to say their names and say one thing about
themselves, and do a quick sketch plan of where they are sitting. This enables you to
personally ask individual students for a response, to begin to establish a more personal
relationship, and gives you greater control of the group – participants are likely to be
more engaged and attentive if they know you may ask them, “Now, Grace, what would
your answer be?”
l Always get your group speaking or moving or contributing in some way in the first 10
minutes. Otherwise you have set an assumption that it is you who will deliver and who
have the expertise and that they do not need/have nothing to contribute.
l Allow as much time for feedback as you do for the actual exercise. This validates the
students’ discussion and allows you to encourage or challenge as necessary which sets
a standard as to the depth of discussion you expect.
l Model the fact that it is OK not to know – be prepared to admit this in response
to a student’s question. you can then ask if anyone in the class can help which
demonstrates that learning is reciprocal and interactive. If no one knows, suggest
ways/sources to find out.
l Use culturally relevant everyday metaphors/analogies to make a point and give
examples and stories from real life.
l Revise the previous session at the beginning of the next one. This sets an expectation
that they will have learned and remembered/revised/reflected on the last session and
that while sessions may be delivered separately they are interlinked and overlap.
l When getting students’ opinions, try to develop a deeper debate by using phrases such
as, “So, what makes you come to that conclusion?” or “Tell me a bit more about why
you would choose that option” or “What is the evidence for that statement/answer?”
l At the start of a course or series of sessions, ask more conscientious students (if you
have been able to identify them) to go first when giving feedback from group work.
This helps to set the standard for the following days/weeks.
l If the whole group is unresponsive, disinterested and you feel you are ‘losing them’ put
them into pairs (preferably not with the person sitting next to them) and ask them to
discuss, define or otherwise work on some task and then to report back. Even if they do
not want to respond to you, they will certainly respond to each other – and the physical
act of moving often stimulates them emotionally and intellectually.
l Deal with the dominating or over-talkative student by saying something like, “John,
you’ve done your share of the work in this session, so let’s hear from some of those
who haven’t had an opportunity...” If the problem persists, you may need to take
the student aside at the end of the session, acknowledge their enthusiasm, explain
your concern to involve others and invite him/her to be your ally by holding back
next time.

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 Different course timetables
These are examples to show how different courses can be built from the modules
according to the purpose, audience and time available.
You will notice that the modules do not appear in numerical order; this is done to balance
sessions containing a lot of factual information with more reflective sessions, to provide a
‘balanced diet’ for each day.
There are two modules (16 & 17) at the end of the manual which are not included in the
suggested five-day course below. you might want to use these if you are creating a longer
course or a course for non-health workers.
Five-day introduction to palliative care

Monday Tuesday Wednesday Thursday Friday

8.15am– Registration Report on Report on Report on Report on
8.30am previous day previous day previous day previous day
8.30am– Introductory Module 7 Module 9 Module 14 Module 15
10am session You can assess You can You can You can tell
pain and other control pain help different others
problems symptoms 2
10am– Refreshments Refreshments Refreshments Refreshments Refreshments
10.30am
10.30– Module 1 Module 8 Module 10 Module 12 final session
12pm What is You can treat, You can use You can give implementa-
palliative care care and morphine end of life care tion
prescribe
12pm– Lunch Lunch Lunch Lunch Lunch
1pm
1pm– Module 2 Module 4 Module 11 Module 6 End of
2.30pm You can do You can break You can You can give course test
palliative care bad news well help different bereavement
in your setting symptoms 1 support
2.30pm– Refreshments Refreshments Refreshments Refreshments Refreshments
3pm
3pm– Module 3 Module 5 Module 13 Session free Presentation
4.30pm You can You can give You can help for home of certificates
improve your spiritual care children and visiting or
communica- families patient case
tion skills studies

You can rearrange this timetable to suit your needs, eg if you do not have morphine, or
you are not working with children, you might leave out these modules and have more
time for a field visit.

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 Three day Introduction to palliative care for basic health workers

Monday Tuesday Wednesday

8.15am–8.30am Registration feedback feedback
8.30–10am Introductory session Module 7 Module 13
You can assess pain and You can help children
other problems and families
10am–10.30am Refreshments Refreshments Refreshments
10.30am–12pm Module 1 Module 8 Module 6
What is palliative care? You can treat, care You can give
and prescribe bereavement support
12pm–1pm Lunch Lunch Lunch
1pm–2.30pm Module 2 Module 5 final session and
You can do palliative You can give short quiz
care in your setting spiritual care
2.30pm–3pm Refreshments Refreshments Refreshments
3pm–4.30pm Module 3 Module 11 Certificate presentation
You can improve your you can help different
Close
communication skills symptoms 1

One day Introduction to palliative care for health workers

8.15am–8.30am Short introductory session

8.30am–10am Module 1
What is palliative care?
10am–10.30am Refreshments
10.30am–12pm Module 2
You can do palliative care in your setting
12pm–1pm Lunch
1pm–2.30pm Module 7
You can assess pain and other problems
2.30pm–3pm Refreshments
3pm–4.30pm Module 9
You can control pain

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 The TeaChINg mODUles explaINeD
The teaching modules explained:
l Each module has a lesson plan showing the main points to be covered, and a guide of
the timing within a 90-minute teaching session.
l Encourage the participants to look at the relevant pages as you are teaching. The more
familiar they become with the Toolkit, the more they will use it as a reference book
after the course.
l You may need to adapt the material to suit your circumstances. If you have less time,
it is best to divide the modules rather than trying to teach all the material in a shorter
time.
If you have more time, some of the group exercises can be given extra time, eg role
play, case studies. This will be beneficial, especially if the participants are unfamiliar
with this type of learning.
If you modify the sessions it is helpful to create a new lesson plan, adjusting the
timing accordingly.
Key to explain the modules
Interactive exercises (group discussion, role play etc)

? Questions to put to the whole group (could be used on a visual aid).

Important learning points.
Important teaching points.

Almost all of the important learning points are in the Toolkit so the participants can turn
to the page and read as you are explaining, and should not need to write many notes.
It may also be helpful to put them on a visual aid, eg flipchart, powerpoint, overhead
projector, which should be prepared before the session.

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 MODULE 1 WHAT IS PALLIATIVE CARE?
AIM OF SESSION
To introduce participants to the principles of palliative care.

LEARNING OBJECTIVES
By the end of the session, participants should be able to:
l define palliative care
l describe why palliative care is needed and who needs it
l describe the holistic approach
l explain the concept of total pain
l explain that palliative care is about quality of life
l describe how palliative care can be introduced early in the disease and work alongside
other treatments
l describe examples of the many ways of giving care.

Time
Topic Teaching methods (minutes)
Definitions of palliative care Buzz groups, writing, explanations 15
The need for palliative care Buzz groups, presentation
of statistics 15
The holistic approach Imagination exercise, explanation 15
Total pain Mini lecture 10
Living as well as dying – Mini lecture, participants
quality of life reflect/discuss 10
Integrating with other treatments Mini lecture 10
Never nothing we can do Brainstorm 10
Summing up Reflection 5

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 Definitions of palliative care (15 minutes)
Find out what the participants understand by ‘palliative care’ – possible ways of doing
this are:

Ask them to write down Buzz groups – With a group who are
their definition on a participants discuss confident or who know
piece of paper, pass a with their neighbour each other already,
bowl around to collect (five minutes) then tell you could simply
them and then read out answers to whole group; take answers from
a selection. you could write some up participants with the
on a flipchart. group all together.

They may say terminal care, pain control, home-based care – all sorts of things.
All of these are true but incomplete – palliative care is bigger than any one of
these things.
This is how the Toolkit defines palliative care:

Palliative care is all about looking after people with incurable illnesses, relieving
their suffering and supporting them through difficult times.

Help people to take this in by:

l having it written out on a flipchart
l putting it on a powerpoint slide or on the overhead projector
l asking everyone to read it from the start of Chapter 1.
It’s not complicated – it’s just about how we can care for those who won’t get better.
Now read the World Health Organization definition from page 1 of the Toolkit – it’s
helpful to ask everyone to turn to it so they know where to find it and so they don’t have
to try to write it out.

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 The need for palliative care (15 minutes)
?
ASK THE PARTICIPANTS IF THEy EVER SEE PATIENTS WHO CAN’T BE CURED. WHAT
KIND OF PATIENTS ARE THEy? (Call out answers)

BUZZ GROUPS (three minutes)

How do we feel when these patients come to us?
Feed back answers to whole group (eg discouraged, sad, weary, we have nothing to
offer etc).

Palliative care has something to offer these patients even though they can’t
be cured
Global statistics – read them from
page 1 of the Toolkit – you can put Palliative care can help people with:
them on a visual aid or ask people
l HIV and AIDS
to look at them on the page. If you
have figures for your country or your l cancer
place of work, you could include
l progressive neurological illnesses
them too.
l end-stage lung disease
The need is enormous.
l severe kidney or heart failure
Who needs palliative care?
Draw on what the participants have l other progressive, incurable diseases.
said – hopefully they have given a
variety of patients – and explain that
palliative care is not just for cancer and HIV.
Turn to the list on page 2 of the Toolkit, or put it up on a visual aid.

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 What’s different about palliative care? – the holistic approach (15 minutes)
Medical work is often about curing disease, using drugs or surgery. Usually our training
focuses on diagnosis, treatment and cure.
Palliative care has a different approach. It sees that people are more than just physical
bodies and recognises we have a mind and a spirit and we are part of a family and a
community. This is called the ‘holistic approach’ – looking at the ‘whole person’.
IMAGINATION EXERCISE
Aim : to show that a sick person’s problems are not just physical.
Use the story on page 2 of the Toolkit, or make up a story of your own.
Ask the participants to close their eyes and imagine they are the woman whose story
you are about to read to them. Read it slowly so they have time to ‘think themselves
into’ the life of the woman.
At the end, ask them what their worries would be if they were that woman.
Brainstorm a list of problems and concerns (participants call out, write on flip chart).

you might end up with a list such as:

l worry about her children
l grieving for her husband
l pain
l cannot sleep
l fear of dying
l no money
l exhaustion
l isolation, family far away
l stigma
l unanswered prayer
l feels far from God.

TOP TIP The aim is not necessarily to make an exhaustive list, just to
demonstrate that many problems are non-physical.

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 The holistic approach looks at problems in four groups
Explain these terms and: The holistic approach is:
l have them written out on a flipchart l physical
l put it on powerpoint or overhead projector l psychological
l ask everyone to look at the list on page 2 of the Toolkit. l social
l spiritual.

Now go back to the problem list you made for the woman and see which ones fit into
each group. You may need to add some more if the list did not include many psycho-
spiritual problems.

Total pain (10 minutes)

Palliative care emphasises that all these four areas of need are important and that
problems in one area affect problems in other areas.
For example:
l Emotional problems such as anxiety and depression can worsen many symptoms, eg
pain, breathlessness.
l Physical problems can worsen psychological ones, eg pain can lead to depression.
l Social problems, eg lack of income or loss of carers, affects physical symptoms.
l Spiritual issues affect psychological wellbeing.

The concept of ‘total pain’

shows how all the areas of need
contribute to pain and other
physical symptoms.

Show the diagram of total pain on

a flipchart, overhead projector or
PowerPoint. You could refer back
to the woman in the story, thinking
about how her problems might
interact and contribute to her pain.
Palliative care has a patient-
centred approach, focussing on the problems which are of most concern to the
patient (eg a patient with HIV may be more concerned with discussing who can help
her care for her children than with diagnosing her rash).
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 Palliative care is about living as well as dying – quality of life (10 minutes)
Palliative care is not just about end of life care – it can start from the time of diagnosis
of an incurable illness.
The aim is not to prolong life or to shorten it, but to improve quality of life for all the
time that is left.
What is quality of life? Physical and emotional well-being – not the absence of disease
but comfort and peace within it.
Quality of life means being able to carry out the things which are important to that
person. This will be different for different people – it might be being able to carry out
activities of daily living, being able to talk with friends or being able to enjoy food. It may
not be possible to achieve the desired goal but improving quality of life is about helping
people to set realistic goals and getting as near to that goal as possible.

Ask the participants to reflect what would be ‘quality of life’ for them.
Ask everyone to think of two things that are important to their own
quality of life, then:
l write them down or
l discuss with their neighbour or
l share them with the whole group.

“You matter because you are you.

You matter to the last moment of your life and
we will do all we can to help you not only to die
peacefully, but also to live until you die.”
Dame Cicely Saunders

The kind of care someone needs will change as the disease progresses.
Explain how the balance of active treatment and palliative care changes - see page 3 of
the Toolkit.

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 Palliative care works alongside and within other programmes (10 minutes)
Palliative care can be provided at the same time as other treatments, eg treatments
for cancer such as chemotherapy, radiotherapy or surgery, ART, treatment of
opportunistic infections, rehabilitation such as physiotherapy, nutritional support
and others.
Palliative care can complement what is going on already so that care is
more holistic.
Many hospital programmes, such as anti-retroviral treatment (ARV) clinics, chemotherapy
or radiotherapy services, are good at providing treatment for diseases but not as good at
helping patients with psychosocial problems such as anxiety, grief, isolation and stigma.
Home-based care often provides good support but little symptom control.
Palliative care can be integrated into both of these kinds of programmes so that they can
provide holistic care.
?
ASK PARTICIPANTS WHO ARE WORKING IN THESE KINDS OF SETTINGS WHAT
TyPE OF CARE THEy PROVIDE AND WHETHER OR NOT THEy FEEL IT IS HOLISTIC
PALLIATIVE CARE.

Pain control without holistic support is NOT palliative care.

Psychosocial support without pain and symptom control is NOT palliative care.

Pain and symptom control + psychosocial support = palliative care

Never nothing we can do (10 minutes)

?
ASK PARTICIPANTS – WHO HAS EVER HEARD A PATIENT BEING TOLD “THERE IS
NOTHING WE CAN DO”? WHAT EFFECT MIGHT THIS HAVE ON THE PATIENT?
IS IT TRUE?

It is not true – there is never nothing we can do. We may feel overwhelmed by so many
problems that we cannot solve – but there are many ways we can help even if we
cannot cure the illness.

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 BRAINSTORM EXERCISE WITH WHOLE GROUP
Aim: To show that there are many different ways we can help.
Ask the group to call out different ways of helping and write them on the flipchart.
you can refer back to the woman in the imagination exercise or talk in general terms,
or both.
you may want to start with buzz groups to get people talking, then the whole group
calls out as many different ways of caring as possible.

Possibilities are:
l nursing care – positioning, washing, dressing wounds, turning, helping feeding
l medicines for pain or other symptoms
l supervising other medicines, eg ARV, TB
l listening
l explaining
l taking to clinic/hospital
l praying, arranging visit from spiritual leader
l volunteer to give practical help – washing, cleaning, shopping, child care
l help with writing a will, making plans for children after death
l income-generating activities/small loan programme
l mobilising family, neighbours, community groups
l being there.

TOP TIP The aim is not necessarily to make an exhaustive list, just to
demonstrate that there are many different ways of helping and we
can always find something we can do.
Read out the quote from Dame Cicely Saunders on page 4 of the Toolkit. “I once asked
a man….”

Summing up (five minutes)

Run over important points of the session.

Ask everyone to think of the most important thing they have learned and what one
thing they want to do differently as a result. They should write this down on a piece
of paper/notebook to keep for themselves. They can add to this as they learn more
during further sessions.

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 MODULE 2 yOU CAN DO PALLIATIVE CARE
IN yOUR SETTING
AIM OF SESSION
To show that palliative care can be done in different ways, using local resources.

LEARNING OBJECTIVES
By the end of the session, participants should be able to:
l describe different models of care
l discuss the needs and resources in different settings
l describe who could make up a palliative care team.

Time
Topic Teaching methods (minutes)
Palliative care in different settings Mini lecture 15
The palliative care tree Explanation, brainstorm 15
Needs and resources Group work 20
Flip chart, feedback and discussion 20
Palliative care team Whole group discussion 15
Summing up Reflection 5

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 Palliative care in different settings (15 minutes) (page 5 of the Toolkit)
Palliative care can be provided in different ways depending on what is possible and
what works best in different places. What works in one country may not work in other
countries, and vice versa.
Palliative care can be given at home, in hospital, in a clinic and in other ways – these are
all different ‘models of care’.
The model of care we use will depend on the needs and the resources where we are.
Palliative care grows and develops as we add different aspects of care onto what is
already in place, to make holistic care.
Tell a few real-life stories of different projects or services to illustrate this. Use examples
from your own setting if you have them, or use some of the stories in the Toolkit on pages
8–11. Stress that these projects started when somebody saw a need: they started small,
building on what was already there, adding extra help to make holistic care.

The palliative care tree (15 minutes)

Ask everyone to look at the tree on the front of the Toolkit. Explain that its four
roots are the four elements of holistic care. When these roots come together, the
‘palliative care tree’ can grow. You could draw the tree on the flipchart as you speak
to help explain.
The resources to feed each root can be found in communities.

BRAINSTORM ON RESOURCES (WHOLE GROUP)

Aim: to show that there are many resources which can create holistic care.
Ask participants to call out things which could make up the different roots of the tree –
you may need to give some examples to help them understand the concept. Referring
back to the stories you told may help.
Write the examples on the tree if you have drawn one, and all turn and look at page 6
together when they have run out of ideas. Compare what is there to what they have
thought of.

Explain that the fruit of the tree is the care that grows out of the resources you have.
The tree shows different fruits that might grow – these are different models of care. In a
particular setting there may be just one kind of fruit, eg a home-based care programme.
Or there may be more than one, eg a home-based care programme working together
with an outpatient clinic.

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 Needs and resources in our own settings (20 minutes)
To think about what will work in our settings, we need to ask four questions (page 5 of
the Toolkit).
Explain these questions, giving some examples:

l Who needs palliative care where we are working? (What type of patients?
How many?)
l What are their main problems? (eg lack of drugs, transport, poor health
education etc)
l What help are they getting at present? (eg existing healthcare services,
community groups, NGOs etc)
l What could be added to improve their care and make it holistic?

GROUP WORK ON NEEDS AND RESOURCES (20 minutes)

Aim: to discuss local needs and resources.
Divide participants into groups of about six people. If there are several people working
in the same place, they should go in the same group.
Each person should describe to the group the situation where he/she works.
Discuss as a group the four questions on page 5 of the Toolkit for each
person’s setting.
Write your answers on flipchart paper to be presented during feedback time.
Be thorough and specific, eg estimating numbers of patients, range of problems,
details about current care etc.
Be realistic about what you could add to the care and to explain how you could
do it.
l Who needs palliative care where we are working?
l What are their main problems?
l What help are they getting now?
l What could be added to improve their care and make it holistic?
FEEDBACK (20 minutes)
Each group presents their answers for one situation.

TOP TIP Keep these flipchart sheets if you are planning an implementation
session at the end of a course.

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 Palliative care team (15 minutes) (page 13 of the Toolkit)
Many of the resources available to us are human resources, eg different health workers,
counsellors, volunteers. Some of these will make up a palliative care team. The core
team will work together and meet regularly. Others may work in partnership; some will
contribute occasionally when their skills are required.
With the group all together, look again at the feedback from the small groups and pick
out the human resources they identified. Discuss:
?
l WHO SHOULD BE IN THE PALLIATIVE CARE TEAM? (BEING REALISTIC ABOUT WHAT
IS POSSIBLE AND PRACTICAL)
l WHAT WILL THEIR ROLES BE? (EG SOME MEMBERS MAy PERFORM SEVERAL
FUNCTIONS AND SOME TASKS MAy BE SHARED By SEVERAL TEAM MEMBERS)
l HOW WILL THEy COVER ALL THE ASPECTS OF CARE THAT THE TEAM NEEDS TO
DELIVER?
l WHAT OTHER PEOPLE WILL CONTRIBUTE, THOUGH NOT AS PART OF THE CORE
TEAM? (EG HOSPITAL PHARMACIST, VISITING PASTOR ETC)

Summing up (five minutes)

Run through the key points of the session.

Ask everyone to think of the most important thing they have learnt and what one thing
they want to do differently as a result. They should add this to their list of personal
learning points (see Module 1).

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 MODULE 3 COMMUNICATION SKILLS
AIM OF SESSION
To improve communication skills.

LEARNING OBJECTIVES
By the end of the session. participants should be able to:
l explain what communication is and why it is important
l demonstrate active listening
l describe some non-verbal and verbal communication skills
l demonstrate good communication skills.

Time
Topic Teaching methods (minutes)
How bad communication feels Listening exercise in pairs 15
What is communication? Presentation 5
Why is communication important? Buzz groups 10
Listening skills Whole group discussion 15
Demonstration, flipchart feedback 10
Practise skills Role play 25
Summing up Comments from group, reflection 10

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 Tell the participants they are going to do an exercise which involves some acting. Do not
tell them what the purpose of the exercise is – let them discover how it feels when they
are not listened to.
LISTENING EXERCISE (15 minutes)
The participants are divided into pairs and each pair into A and B.
The As go outside and are told they will go back and tell their best friend B something
very exciting that they have wanted to tell them for a very long time. They can speak in
whatever language they prefer.
The Bs are told that they are going to demonstrate bad communication skills. They
should start listening to whatever they are told but then get bored and show by body
language that they are not really interested. (five minutes)
Reverse A and B. Take the Bs outside and tell them they will go and tell their friend
something very sad. Explain to the As that they are going to be poor listeners. They
should keep interrupting and start to talk about themselves. (three minutes)
The aim of this exercise is to see what bad communication feels like.
FEEDBACK (seven minutes) with the whole group.
How did it feel for one who was talking?
What made them feel they weren’t being listened to? (eg no eye contact, poor
attention)

What is communication? (five minutes)

What do we mean by communication? you could ask the group for their ideas.
Explain:
it is a two-way process, giving and receiving messages
the aim is to reach understanding – giving a message that is not received is
not communication
communication is very important in palliative care
good news – everyone can learn and practise communication skills.

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 Why is communication important? (10 minutes)
BUZZ GROUPS (five minutes)
Discuss why good communication is important and how it helps our patients.

Then hear feedback from the group; you

may want to write their answers on the Good communication:
flipchart. Here are some examples you could
l creates relationships
have prepared.
l gives value to the other person
l reduces isolation
l gathers information
l gives information
l enables expression of feelings
l reduces uncertainty

Listening skills (15 minutes) (page 17 and 18 of the Toolkit)

We sometimes think communication is all about getting our message across. Listening
is just as important as talking and in palliative care it is often more important.
Listening is not simply being present while someone else speaks. It is a skill which can
be learned and practised – this is sometimes called ‘active listening’.
Non-verbal skills
Explain the concept of non-verbal communication: ‘actions speak louder than words’.
How we appear with our
bodies (body language) gives Non-verbal listening skills
out many messages.
l Keep eye contact, pay attention
The exercise at the beginning
l Sit near the patient at their level
should have produced some
ideas about unhelpful body l Relaxed posture, sit forwards and keep still
language. Ask the group to
l Allow silence, don’t interrupt
call out other listening skills
to add to these. l Encouraging responses, eg nodding, small
noises/phrases
l Facial expression
l Touch (discuss what is/is not appropriate in
this culture)

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 Some listening skills are listed on page 18 of the Toolkit.
you could put this list up on a visual aid and demonstrate some of them, eg posture,
nodding, encouraging responses.
?
THE WAy PEOPLE LISTEN MAy VARy IN DIFFERENT CULTURES. WHAT IS IMPORTANT
IN THIS CULTURE? ENCOURAGE THE PARTICIPANTS TO THINK ABOUT PEOPLE THEy
KNOW WHO LISTEN TO THEM AND WHAT MAKES THEM GOOD LISTENERS.

Verbal skills
Explain what is meant by:
l Clarifying – making sure you have really understood the patient, by asking appropriate
questions, eg “you said you are having frequent fevers. Is that once a day, or more?”
l Summarising – feeding back the most important points of the patient’s story, to check
that you have understood.
DEMONSTRATION ROLE PLAY OF POOR COMMUNICATION (three minutes)
Aim: to illustrate the different skills you have discussed.
Two trainers (or one plus a participant) role play a consultation in which a healthcare
worker (eg doctor) has very bad communication skills. Include as many skills as possible
from the list (ie the lack of them) and arrange interruptions (eg another nurse coming
in, the phone ringing etc).
The participants take notes on what goes wrong.
FEEDBACK (seven minutes) with flipchart – you could use the list above and put a
cross by the ones which were missing and add others, eg interruptions, summarising
incorrectly etc.

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 Practising communication skills – groups of three or four (25 minutes)
The participants now practise using the skills they have discussed by role-playing
consultations between a patient and a health worker (see guidelines for role play, pages
9–10 of this training manual). They should focus on good communication rather than on
trying to make a diagnosis.
Another option which may be easier for those who are not used to role play is to use a true
story from their own life.
ROLE PLAY OF PATIENT AND
HEALTH WORKER (three minutes) REAL LIFE STORIES
Aim: to practise communication skills. Aim: to practise communication skills.
Use Resource 1
One participant tells another a story from
Two people role play a consultation. their own life, preferably something that
The ‘patient’ can use a scenario from has been difficult (eg an illness or a loss).
Resource 1 and they can enlarge upon They should speak in whatever language
the story however they want, or they they are most comfortable with. The
can make up their own story. They other participant listens and uses the
should speak in whatever language skills that have been discussed, asking
they are most comfortable with. The questions when appropriate.
‘health worker’ has to listen and use
The other group members watch
the skills that have been discussed,
carefully, they can note down their
asking questions when appropriate. The
observations if they want.
exercise is about communication skills,
not finding a diagnosis. There is no need Then they swap – encourage them
to examine the patient. to keep the conversations short so
that there is time for everyone to be
The others watch carefully, they
the listener.
can note down their observations
if they want. After each role play or conversation,
the actors comment first on:
Then they swap, using different
scenarios – encourage them to keep l how it felt
the scenes short so that there is time for
l what went well
everyone to play the health worker.
l what could have been better.
After each role play or conversation,
the actors comment first on: The observers can then comment,
giving positive feedback and then
l how it felt
constructive criticism. Make it clear that
l what went well the group must keep the stories they
hear confidential.
l what could have been better.
The observers can then comment,
giving positive feedback and then
constructive criticism.

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 Summing up as whole group (10 minutes)
Come back into whole group and discuss general learning points from the exercise: what
was difficult, what was surprising, what they have learned, what they need to practise
more, how they could put it into practice in their work.
Run through the main points of the session.
Reflection

Ask everyone to think of the most important thing they have learned from this session
and what one thing they want to do differently as a result. They should add this to their
list of personal learning points (see Module 1).

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 MODULE 4 yOU CAN BREAK BAD
NEWS WELL
AIM OF SESSION
To teach participants skills in breaking bad news.

LEARNING OBJECTIVES
By the end of the session, participants should be able to:
l discuss the value of telling the truth to patients
l demonstrate the steps in ‘BREAK NEWS’
l explain the importance of confidentiality.

Time
Topic Teaching methods (minutes)
The value of telling the truth Buzz groups, discussion 20
Breaking bad news Demonstration and
flipchart feedback 10
Presentation BREAK NEWS 10
Role play Small group role play 25
Whole group feedback 5
Confidentiality Whole group discussion 15
Summing up Reflection 5

The last session was mainly concerned with listening. This session will look at what we say
to patients and how we say it.

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 Telling the truth when the news is bad (20 minutes) (page 18 of the Toolkit)
How much bad news should we tell patients? Should we always tell the truth? We often
find it difficult to give people bad news. Ask the participants to discuss a scenario briefly,
in buzz groups:
BUZZ GROUPS (three minutes)
you are seeing a 54-year-old man at home who has come from the hospital where he
has had some tests done. The medical note says that the tests show advanced cancer
of the oesophagus. Should you tell him the truth? Why or why not?

Feedback on flipchart – make a list of advantages and disadvantages of telling the truth.
Hopefully you will end up with more advantages. These could include:

Telling the truth:

l reduces uncertainty and helps to answer unanswered questions that the
patient may be afraid to express
l reduces unrealistic hope and continual searching for a cure
l allows the patient to make informed choices and reduce expenditure on
futile treatments
l allows the patient to make realistic plans (writing wills etc) for those left
behind and for their own remaining time
l allows honest communication with family and health workers
l if done well, can build on the relationship of trust between patient
and carer.

Now add to the scenario…

While you are thinking what to tell him, his daughter asks to speak to you outside. She
says: “you must not tell him anything that may upset him. He will not cope with any
bad news and it will make him worse.”
Should you agree to the daughter’s request? Why or why not?

you could use buzz groups again, or discuss it as a whole group.

Feedback – hear from those who would agree with the daughter and those who would
disagree; you could list the arguments on two sides of the flipchart.

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 There may be a lively discussion here and people may have different opinions. Try to
include the following points:
l It is always important to listen to the family and hear their concerns.
l Families want to protect their loved ones and themselves but may not recognise the
advantages of telling the truth (see list made in last exercise).
l We may need to counsel families about the advantages of telling the truth.
l Being able to talk about things honestly within the family and in the healthcare setting
is helpful for most people.
l The patient is the centre of our care; we must do what is best for him or her, which is
not always what the family want.
l The way things are done ‘in our culture’ is not always the best way of doing things.
l The patient should always be given the opportunity to know more, but doesn’t have to
be told if they don’t want to know.

Breaking bad news (20 minutes)

DEMONSTRATION (10 minutes)

Aim: to illustrate unhelpful ways of breaking bad news.
Two trainers do a role play of a consultation in which bad news is communicated
badly. you could include poor communication skills, being in a hurry, using medical
language, being unsympathetic etc. you will need to think through the story and
rehearse the role play beforehand.
Get the participants to comment on what they have seen.
Was it a good consultation?
Why not?
Ask them to pick out the things which were not helpful.
Why do they think the health worker did it badly? (He was possibly unconfident how
to do it, or he was afraid of the patient getting upset, or of them taking too much of
his time).

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 BREAK NEWS (10 minutes) (page 19 of the Toolkit)
Ask everyone to turn to page 19 of the Toolkit and go through the ‘Break news’ checklist
of how to break bad news well, explaining each point and giving examples.

Practising breaking bad news (25 minutes)

you can use role play in small groups (see page 9 of this training manual), or you
could do an interactive role play with the whole group all together (see page 10 of this
training manual).
ROLE PLAY IN GROUPS OF FOUR INTERACTIVE ROLE PLAY
Aim: to practise breaking bad news. Aim: to practise breaking bad news.
Use Resource 2 Use Resource 2
Start by using the scenario that was Two participants role play the scenario
demonstrated, this time doing it well that was demonstrated, this time doing
and incorporating steps from the ‘Break it well and incorporating steps from
news’ guidelines. Other group members the ‘Break news’ guideline. The trainer
can join in as relatives, or ‘freezes’ the action from time to time,
can observe. asking the class to comment, or suggest
what the health worker should do next.
FEEDBACK
Participants can swap to take turns in the
Ask the group: different roles.
l how it felt you can move on to use the other
scenarios from Resource 2.
l what went well
l what could have been better.
Swap around so that everyone has a
chance to be the health worker. Use the
scenarios in Resource 2. There are two
pages – one for the health worker to
read, one for the patient.

Brief feedback in whole group (five minutes)

Discuss general learning points from the exercise – how it felt to be the health
worker/patient, what was difficult, what was done well. Were there any surprises?
How can they imagine putting it into practice in their work? What do they need to
practise more?

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 Confidentiality (15 minutes)
?
ASK PARTICIPANTS WHAT THEy UNDERSTAND By CONFIDENTIALITy – THEy MAy HAVE
A VARIETy OF ANSWERS.

In simple terms, confidentiality is the keeping of secrets. Maintaining confidentiality

means not disclosing information about a patient to other people unless you have the
patient’s permission to do so.
Health workers have a lot of personal information about other people. They must always
be careful when they are chatting to others that they do not reveal anything which should
be kept confidential, even if they do not identify the patient by name.

WHOLE GROUP DISCUSSION ON CONFIDENTIALITY

Aim: to increase understanding of confidentiality.
l Why is confidentiality important? (eg to maintain trust, to show respect for the
patient’s rights, to prevent them coming to harm)
l Sometimes you may want to encourage a patient to share information with their
family, but you cannot force them to do so. Can you think of some examples?
(eg telling a spouse about a positive HIV result, telling family that you have a short
time to live)

This is an important subject. There is a module looking at it in detail, which you could use
according to the needs of your group and the time you have available.

Summing up (five minutes)

Run through the key points of the session.

Ask everyone to think of the most important thing they have learned and what
one thing they want to do differently as a result. They should add this to their list of
personal learning points (see Module 1).

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 MODULE 5 yOU CAN GIVE
SPIRITUAL CARE
AIM OF SESSION
To raise awareness of spiritual issues and support.

LEARNING OBJECTIVES
By the end of the session. participants should be able to:
l discuss what is meant by ‘spirituality’
l explain the importance of spiritual support in palliative care
l describe how to take a spiritual history
l explain what is meant by the HOPE checklist
l discuss different ways of giving spiritual support
l discuss their own feelings about spirituality.

Time
Topic Teaching methods (minutes)
What is spirituality? Answers in a bowl, flipchart 10
Why is spiritual
support important? Buzz groups and presentation 15
Awareness of our own spirituality Reflection 5
Taking a spiritual history Group work and flipchart feedback 30
HOPE checklist Presentation 5
Giving spiritual support Whole group brainstorm 10
Different views about
spiritual care Agree/disagree exercise 10
Summing up Review and reflection 5

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 What is spirituality? (10 minutes) (page 20 of the Toolkit)
?
DOES EVERyONE HAVE A SPIRITUAL SIDE? WHAT DO THE PARTICIPANTS THINK?

WHAT IS SPIRITUALITY?
Aim: to show that spirituality has several aspects.
Ask participants to write their answer on a piece of paper (three minutes).
Pass around a bowl to collect the papers and then read them out. Note down different
answers on flipchart. If possible, you could group them together
(see below) (seven minutes).

People from different backgrounds and cultures may have different ideas; it is good
to hear them all. The important thing is not to arrive at one ‘correct’ answer or definition,
but to show that there are many parts to spirituality and it is much more than
just ‘religion’.
If the group only comes up with ‘religious’ definitions, you will need to mention
other aspects.

Different aspects of spirituality

l Meaning (Who am I? Why am I here? What is life about?)
l Transcendence (belief in God or spiritual powers/forces, creation, afterlife)
l Harmony (at peace with other people, need to forgive/be forgiven, fitting in
with culture and heritage)

Have these aspects prepared on a visual aid. Show how the different definitions
participants have given refer to different aspects.

Why is spiritual support important? (15 minutes)

At times of crisis and at the end of life people often ask spiritual questions, eg “Why has
God allowed this to happen to me?”
BUZZ GROUPS (five minutes)
What questions do people ask when coming to the end of life?
Have you seen a patient or family member troubled by spiritual issues?

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 Hear feedback from around the room – you may want to write some of their comments
on the flipchart. Here are some examples you could have prepared.

Spiritual issues people face

l Why has this happened to me?
l Does God exist and if so, why has he allowed this to happen?
l Am I being punished?
l Who or what has caused my suffering?
l What meaning does my life have?
l What will happen when I die?

We do not have to know the answers to all these questions, but we can support the
patient as they seek the answers for themselves in different ways. If we don’t address
this side of care, we may treat their physical pain but leave them in ‘spiritual pain.’

Reflection (five minutes)

REFLECTION EXERCISE (five minutes)

Aim: to be aware of our own spirituality.
Ask participants to reflect for a few minutes, in silence, on their own spirituality. They
may want to close their eyes, or note down their thoughts on paper.
How do they feel about their own spirituality?
How will this affect their work?
Are there questions they need to explore for themselves? How will they do this?

Spiritual histories (30 minutes)

We need to explore a person’s spiritual journey in order to understand people’s needs
and assess “spiritual pain”.

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 SMALL GROUP WORK ON TALKING ABOUT SPIRITUAL ISSUES (15 minutes)
Aim: to make a list of useful questions for taking spiritual histories.
l What questions have you found to be useful?
l Do you find it easy to explore spiritual issues with patients?
l Why or why not?
FEEDBACK (15 minutes)
The groups feed back useful questions and any other points from their discussion.
Make a flipchart list – you can also suggest the ones on page 20 and see if people think
they are useful.

Listening is one of most important tools in spiritual support. Taking the history is not
just information-gathering, it is part of our care to listen and try to understand.
• ?
ASK IF ANyONE HAS A STORy OF A CONVERSATION ABOUT SPIRITUAL ISSUES WHICH
HAS GONE WELL OR GONE BADLy – OR TELL A STORy yOURSELF.

HOPE (five minutes) (page 21 of the Toolkit)

Present the checklist and explain each point.

Different aspects of spirituality

l Hope – what are the sources of hope, meaning, peace for that person
l Organised religion – what is its role for that person
l Problems/issues/questions they are facing
l Effect on care – how

The first three letters are about taking a spiritual history, finding out what is
concerning the patient, the last is about how we care and support.
BRAINSTORM WITH WHOLE GROUP (10 minutes)
Aim: To show that there are many different ways we can help.
Call out as many ways as possible in which we can give spiritual support. Write them on
the flipchart.

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 The list may include:
l asking a chaplain or counsellor to see them
l finding a faith leader from their own religion to visit
l arranging for them to go to their place of worship
l providing a place where they can reflect/pray
l praying with them
l providing things such as a Bible, Koran, or other scriptures
l reading their scriptures to them
l arranging for certain rituals to be carried out, eg Holy Communion
l playing music which they find helpful.

TOP TIP The aim is not necessarily to make an exhaustive list, just to demonstrate
that there are many different ways of helping and that we can always find
something we can do.

DIFFERENT VIEWS ABOUT SPIRITUAL CARE (10 minutes)

Aim: to become more aware of our own feelings about spiritual care.
l Each participant is given a paper with a statement written on it in big letters. It is
good if some have the same statement. They must decide whether or not they
agree with the statement.
l One side of the room is designated as ‘Agree’ and the other side as ‘Disagree’.
l Each participant stands up in turn and reads out their statement and says in one
sentence whether or not they agree and why, then sticks it on the appropriate wall,
or somewhere in between if they only partly agree.
l Explain that others are not allowed to comment at this stage so there will be no
debate with the whole group – encourage people to discuss with each other during
a tea break if they wish.
l Explain that this is not a test, there are no ‘right’ answers to some of the statements
– the aim is to get people thinking

TOP TIP If you think people will be anxious or unwilling to share their
opinions with the whole group, you could get them to put the papers
in an ‘Agree box’ and a ‘Disagree box’ then read them out and put
them on the wall. Observe the similarities and differences in
people’s views.

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 Statements could include:
l I would be willing to share my own beliefs with someone who is dying.
l Every person is a spiritual being.
l Helping someone undergo a religious conversion is wrong.
l Spirituality has nothing to do with formal religion.
l I would feel comfortable praying with a patient.
l I can give spiritual support to people of different faiths.
l I would never take a patient to church.
l I am afraid of dying.
l There is always a purpose in suffering.
l A person must make peace with God before death.
l Prayer always gets results.
l Forgiveness is important before death.
l I learn about spirituality from my patients.
l It is essential to refer to a person’s faith advisor for spiritual support.
l My faith helps me give palliative care.
l Only faith makes sense of death.

Summing up (five minutes)

Run through the key points of the session.

Ask everyone to think of the most important thing they have learned and what
one thing they want to do differently as a result. They should add this to their list of
personal learning points (see Module 1).

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 MODULE 6 yOU CAN GIVE BEREAVEMENT
SUPPORT
AIM OF SESSION
To improve understanding of grief and bereavement.

LEARNING OBJECTIVES
By the end of the session, participants should be able to:
l define bereavement, grief and mourning
l describe emotional reactions to loss
l describe signs of stress in palliative care workers
l explain ways of preventing burn-out
l discuss cultural practices around death
l discuss bereavement care.

Time
Topic Teaching methods (minutes)
Introduction Definitions 5
Grief reactions Group work on grief 20
call out, explanation 5
Looking after ourselves Whole group discussion 20
Bereavement customs
and support Group work 35
Summing up Reflection 5

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 Bereavement (five minutes) (Page 21 of the Toolkit)
Families’ needs do not end when their loved one dies. Bereavement support is part of
palliative care.
Explain the following terms:
l Bereavement is the loss of something of value (not only of a person but could be loss of
health, job, role, body image etc).
l Grief is a person’s reaction to the loss and includes a range of emotions. It can
happen before the loss occurs, eg when someone first finds out that they have a life-
threatening illness (‘anticipatory grief’)
l Mourning usually refers to the behaviour and actions of someone who is bereaved; it
includes traditional customs and practices around death.

GROUP WORK ON GRIEF (20 minutes)

Aim: to explore reactions to loss in patients, families and health workers.
Read out the following scenario to the whole group:
Amina is a 32-year-old woman with three children aged between five and
15. She is married and has a younger unmarried sister with whom she is
particularly close to. She was found to have a brain tumour a few weeks ago.
The family cannot afford any treatment. The doctor has discharged Amina
from hospital to die at home.
Now divide into three groups (or more, depending on numbers – if more, then some
groups will work on the same character). Each group should think about one character
from the scenario, imagining and discussing how they might feel.
(10 minutes)
Group 1 is Amina
Group 2 is her sister
Group 3 is her home care nurse or volunteer.
Each group has a flip chart paper and writes down all their thoughts and feelings.
FEEDBACK (10 minutes)
Put the papers alongside each other and see the similarities and differences across all
three. (you could use the ‘walking wall’ – see page 3 – especially if there are more than
three groups)
There will probably be many similarities in the three groups, eg helpless, hopeless,
“its not fair”.

Patients, families and healthcare workers go through many of the same feelings when
facing death and loss. It can help others to know you feel the same way as they do.

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 Grief reactions (five minutes) (page 21 of the Toolkit)
Make a list of different emotions that people
experience when someone dies. Use the feedback Grief reactions
from the exercise above, and ask the participants to
l shock or disbelief
call out others.
l anguish and severe distress
Look at the list on page 21 of the Toolkit.
l anger
l searching for the lost one
l depression, fatigue, loss of
interest in life
l acceptance and planning
for the future

Looking after ourselves (20 minutes)

From the exercise we have seen that as palliative care workers, we are affected by the
demands of caring for very sick people, and experience repeated losses of the patients we
have known.
Sometimes we may become overwhelmed and are unable to carry on working; this is
called ‘burn-out’.
?
ASK THE GROUP TO THINK OF TIMES WHEN THEy OR THEIR COLLEAGUES HAVE FELT
OVER-BURDENED. WHAT HAPPENED?
WHAT ARE SOME OF THE SIGNS OF STRESS?
CALL OUT ANSWERS – yOU CAN WRITE THEM UP IFyOU WISH, THEN TURN TO THE
LIST ON PAGE 15.

Signs of stress
l Tiredness, poor concentration
l Loss of interest in work, neglect of duties
l Irritability, anger
l Withdrawal – avoiding patients and colleagues
l Feelings of inadequacy, helplessness and guilt
l Depression – lack of pleasure, tearfulness

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 We need to develop ways of preventing this from happening. We should not wait until
someone is at the point of burn-out. Prevention is better than cure.
?
ASK THE GROUP FOR WAyS OF PREVENTING BURN-OUT – CALL OUT IDEAS, yOU CAN
REFER TO THE LIST ON PAGE 15 OF THE TOOLKIT AND ADD OTHERS.

Looking after ourselves and our team

l Make sure everyone has regular time off
l Make a regular time to discuss patients and problems
l Make sure everyone knows how to get help (eg who they can ring for advice
about patients)
l Ongoing training and supervision increases confidence and competence
l When a patient dies, take time to reflect, recognising that multiple losses are
inevitably stressful
l Make time to relax together – over tea, or a shared meal

Supporting bereaved families (35 minutes)

Bereavement support is part of palliative care. How we do this will depend on cultural
beliefs and practices surrounding death and dying. Different cultures and faith groups
have different customs. Many are helpful, some may not be. Our cultures are precious but
they change over time and mean different things to different people at different stages.
Sometimes we have to protect our cultures, and sometimes we have to challenge them.

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 GROUP WORK ON BEREAVEMENT (35 minutes)
Aim: to examine bereavement customs and discuss their value.
Make groups of five to six people. If possible, put people of similar traditions together,
eg those of the same faith group or tribe should work together.
Discuss (20 minutes)
l What are the customs, beliefs and practices around death in your culture/
area/faith group?
l Which of these are helpful and why?
l Are any unhelpful and why?
l How could a palliative care team give bereavement support in this setting?
FEEDBACK (15 minutes)
Each group presents helpful/unhelpful customs, and their ideas about bereavement
support. Others can comment and discuss.

Summing up (five minutes)

Run through the key points of the session.

Ask everyone to think of the most important thing they have learned and what
one thing they want to do differently as a result. They should add this to their list of
personal learning points (see Module 1).

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 MODULE 7 yOU CAN ASSESS PAIN AND
OTHER PROBLEMS
AIM OF SESSION
To improve pain assessment and history-taking skills.

LEARNING OBJECTIVES
By the end of the session, participants should be able to:
l describe how to carry out a pain assessment
l take a holistic history and make a problem list
l explain the use of Tools 1 and 2.

Time
Topic Teaching methods (minutes)
Pain assessment Presentation, looking at
Tools 1 and 2 20
Whole group discussion on
different pains 20
Holistic histories Presentation 5
Group work 25
Feedback 15
Summing up Reflection 5

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 Pain Assessment (25 minutes) Presentation (page 26 of the Toolkit)
This may be a presentation with flip chart, overhead projector or PowerPoint but involves
some group participation. The points to cover are:
Pain assessment is very important and it is often dealt
with very badly. Pain often remains undiagnosed and Pain is what the
inadequately treated. patient says hurts.
You may like to show this box as a flip chart or PowerPoint
slide or on the overhead projector. Pain is what the patient says hurts, not what the
health worker thinks it should be. Always believe your patient.
Go through the assessment of pain on page 26.
Look at the body chart on Tool 1. you could have an enlargement of it on a
flip chart.
Look at Tool 2 and discuss the different ways of scoring pain. Discuss which they think
would be most appropriate for their setting. For those dealing with children, the faces
may be most useful.
Look at the seven important questions to ask the patient in Tool 2.
Some patients are not able to answer questions, eg small children or those who are
unconscious or confused. We need to pay extra attention, listening to the carers and
observing with our eyes for signs of pain.

WHOLE GROUP DISCUSSION ON DIFFERENT PAINS (20 minutes)

Aim: to discuss assessment of different types of pain.
l Ask everyone to think of a pain which they have experienced in the past
(eg labour pain, a broken bone, a headache with malaria, toothache, etc) and
to remember how it felt. There is no need to tell the rest of the group.
l Ask them to score their pain using the five finger score – everyone can hold up their
hands at the same time.
l Ask what types of pain their patients have. As a type of pain is called out, the trainer
can discuss that type of pain and its assessment with the group (see examples
below). The participant could come up and fill the position of the pain on the body
chart previously drawn on the flip chart.
l If participants do not produce many examples, provide them yourself or use
those below.
l The trainer could pretend to have the conditions listed below and the participants
can ask questions and either fill in a sample sheet of Tool 1 or a large body chart on
a flip chart or blackboard.

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 A painful wound, eg a burn A painful swelling, eg a tumour
l The pain is due to tissue damage. l The pain is due to inflammation
and pressure effects as well as
l How do patients usually describe
tissue damage.
the feeling?
l What is the usual story?
l The history should include how the
wound started, has the pain got l How would you assess the pain using
worse, and the effects of movement, the body chart and pain score?
positioning, drugs etc.
l How severe is the pain? This should
Painful muscle spasm
be assessed using Tool 2.
l Can occur in a bed-bound patient, or
l The position and size of the wound
cerebral palsy or stroke.
can be marked on the body chart.
l How could this be assessed, especially
if the patient is not able to speak?
Peripheral neuropathy
l Again the trainer could demonstrate
l The position and size of the wound this (eg observing position and
can be marked on the body chart. posture, feeling muscle tone and
watching for signs of pain).
l Can occur in HIV, or can be caused by
ARVs or isoniazid. l A participant can fill in the body chart.
l The pain is due to damaged
nerves sending abnormal signals
to the brain.
l How do patients describe this?
l How would this pain be assessed
using the pain score and body chart?

Holistic histories presentation (five minutes)

Taking a good history is important when assessing any problem. It involves listening to
the patient and also family members and other carers.
This is a good time to have a brief revision of communication skills. Get the participants
to call them out.
Stress that a problem in one area affects other areas so the history is not just about the
specific symptom in question.
A holistic history will need to include all the elements of palliative care – social,
emotional and spiritual as well as physical and will finish with a problem list.

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 GROUP WORK ON HOLISTIC HISTORY TAKING (25 minutes)
Aim: to teach a holistic approach to patient assessment.
Use Resource 3
Work through the first case together, the participants calling out ideas and the trainer
writing them on the flip chart.
Then divide into three smaller groups and give each one a different case to discuss.
They can write their ideas on flipchart paper to present to the class at the end.
For each case, discuss:
l How would you assess this patient? What might be the cause of some of the
problems? What questions would you like to ask? Try to group them into the four
areas of holistic care
l Write a short list of the problems you imagine are most important for this patient.
Remember that these may be physical, emotional, social and spiritual.
FEEDBACK (15 minutes) – each group presents and others comment.

TOP TIP Suggested answers to case 1 are given below. Work through the
other cases yourself before the session so that you are ready with
ideas if the participants do not come up with many.

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 Suggested answers to Case 1
you visit a 24-year-old woman with advanced cancer of the cervix. you have been
treating her with morphine for abdominal pain. Now she is lying silently in the house.
There is a very bad smell in the room, which is untidy, and the floor has not been swept.
Her 12-year-old old niece is with her.
What questions do you need to ask her?
l Physical
– Questions about her pain – this should be assessed using the seven questions
and pain scales on Tool 2
– How much morphine is she taking?
– Does she take it properly?
– Does she have a discharge?
– How is her urinary function?
– Are her bowels OK?
– Is she able to eat?
l Emotional
– How is she feeling?
– Is she depressed?
l Social
– Who is caring for her?
– Is she isolated because of the smell?
l Spiritual
– Does she have a faith that is important to her?
– Is she receiving any spiritual support?
What questions would you like to ask her niece? They may include:
l Is anyone else helping you look after your aunt?
l Do you need more help?
l Are you missing school? .
What do you think would be on her problem list?
Get the group to think of the possible problems and then choose the three they think
are most important. In the example above they may chose:
l pain
l smell
l social isolation and lack of care.

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 Summing up (five minutes)
Run through the key points of the session.

Ask everyone to think of the most important thing they have learned and what
one thing they want to do differently as a result. They should add this to their list of
personal learning points (see Module 1).

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 MODULE 8 yOU CAN TREAT, CARE
AND PRESCRIBE
AIM OF SESSION
To introduce the principles of pain and symptom control.

LEARNING OBJECTIVES
By the end of the session, participants should be able to:
l describe the principles of treat, care, prescribe
l discuss the concept of a balance between benefit and burden
l explain the principles of good prescribing
l practise explaining drug regimes and using Tool 6.

Time
Topic Teaching methods (minutes)
Treat, care, prescribe Presentation 5
Treatment Explanation 5
Benefit/burden balance Small group work 15
Feedback and discussion 10
Care for patient Presentation 5
Principles good prescribing Presentation, look at Tools 6 and 17 15
Group work on educating patients Case studies, role play 20
Feedback Whole group discussion 10

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 Principles of symptom control (five minutes) (page 23 of the Toolkit)
Symptom control is a vital part of palliative care.

Pain and symptom control + Psychosocial support = Palliative care

We can do a lot with few resources – even if we cannot do everything we would like, there
is never nothing we can do.
We need to use our resources well, to maximise
their potential.
Principles of symptom control
Symptom control is not just about drugs – a lot can
l treat
be done with good nursing care. The Toolkit looks at
symptom control under three headings. l care
Each symptom will be dealt with in this way when we l prescribe
come to the ‘Head-to-toe guide.’

Treat the treatable (five minutes)

Explain the concept as on page 23 of the Toolkit, giving examples of treatments which
may relieve symptoms.
Explain the concept of benefit against burden as on page 23 of the Toolkit.

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 GROUP WORK ON BENEFIT AND BURDEN (15 minutes)
Aim: to think about the benefits and burdens of different treatments.
Use Resource 4
Groups work through some of the examples in Resource 3. Choose the ones which are
most suitable for your setting. Make sure different groups look at different examples.
Ask them to create a list of possible benefits and burdens for each situation and write
the list on flipchart sheets.
The idea is not to come up with an answer of whether or not the treatment is
worthwhile, but rather to think about the benefit/burden balance.
FEEDBACK (10 minutes)
The groups present the cases they have looked at and feed back their lists – members
of the wider group can add comments.
Emphasise that there are no absolute answers – the benefit/burden balance will
depend on the individual patient and circumstances. But these are the things that we
should discuss with patients and families when considering a treatment.

Care for the patient (five minutes) (page 24 of the Toolkit)

Explain the concept as on page 24 of the Toolkit.
It includes nursing care, practical help, explanations and advice, emotional support etc.
Families and volunteers should be able to do everything in the ‘care’ section for each
symptom. The palliative care team needs to teach and encourage them in this.

Prescribe palliative drugs (15 minutes)

Principles of good prescribing
Explain the principles of good prescribing on
pages 24-25 of the Toolkit. l Only give drugs that help
Emphasise that only those licensed in their l Educate patients and carers
country can prescribe these drugs but it is
l Keep drugs to a minimum
important for others (eg nurses and volunteers)
to know about them as they may be able to give l Review drugs and symptoms
advice to patients/prescribers.
Make sure participants are aware of specific legal requirements in their country, eg
prescribing controlled drugs, which groups of health professionals can prescribe which
drugs etc.
Explaining the drug regime clearly to the patient is vital. The drugs will not work if they
are not taken properly (page 25 of the Toolkit). Tool 6 is designed for the patient to
keep as a reminder.
Look at Tool 6 together and explain how to fill it in.
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 EXERCISE TO PRACTISE EDUCATING PATIENTS ABOUT DRUGS (20 minutes)
Aim: To practise using Tool 6 and 17.
To practise explaining drug regimes to patients.
Use Resource 5 and copies of Tool 6
1) Demonstration
Use the first example prescription in Resource 5 and show how you would fill in Tool
6 to explain this regime. (You could draw a big version of Tool 6 on the flipchart and
write the drugs on it, or pass around a completed form for people to see).
Now role play explaining the drug regime to a patient – a participant or another
trainer can play the patient.
2) Work in pairs
Participants fill in Tool 6 for the second prescription in Resource 5.
Role play explaining the regime to a patient.
Participants can use their existing knowledge of side effects etc, and also look up
information on drugs using Tool 17.
Work through as many prescriptions from Resource 5 as possible.

TOP TIP If you want to make it easier, have some Tool 6 forms already filled
in according to the prescriptions in Resource 5 and the participants role
play explaining the regimes.

Emphasise that this is not just for prescribers – everyone caring for a patient should be
able to explain and help a patient follow a drug regime even if they haven’t prescribed
it themselves.

Feedback to whole group (10 minutes)

Groups feed back general observations – call out rather than give presentations
l Did they find it easy using the charts?
l If they role played a patient, did they understand easily?
l Did they learn anything new?
l Do they have any tips they use for explaining drugs to patients?

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 Summing up (five minutes)
Run through the key points of the session.

Ask everyone to think of the most important thing they have learned and what
one thing they want to do differently as a result. They should add this to their list
of personal learning points (see Module 1).

Encourage everyone to look briefly at the Head-to-Toe guide (page 26 of the Toolkit)
in their own time.

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 MODULE 9 yOU CAN CONTROL PAIN
If the participants have access to morphine or will have in the near future, ‘Module 10: you
can use morphine’, must be taught straight after this one:
AIM OF SESSION
To teach the analgesic ladder.

LEARNING OBJECTIVES
By the end of the session, participants should be able to:
l describe the three steps of the analgesic ladder
l give examples of drugs from each step of the ladder
l explain the use of adjuvant drugs.

Time
Topic Teaching methods (minutes)
Recap pain assessment Q and A whole group 5
Analgesic ladder Presentation 20
Morphine facts and fears Whole group discussion 10
Adjuvant drugs Presentation 20
Analgesic ladder Quiz 20
Answers to quiz 10
Summary Reflection 5

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 Revise pain assessment (five minutes) (page 26 and Tool 2 of the Toolkit)
Start with a question and answer session with the whole group on pain assessment,
revising the questions to ask, what to look out for, and how to use the pain scales.

Analgesic Ladder (20 minutes)

Go through ‘Treat, Care’ section on page 26.
Emphasise the importance of non-drug measures. Principles of pain control
‘Prescribe’ – Explain the principles of pain control – by l By the mouth
the mouth, by the clock, and by the ladder (page 27 of
l By the clock
the Toolkit).
l By the ladder
Emphasise that ‘by the clock’ may be a new concept
for many, and will need to be explained to patients and
carers.
It is also important to explain to patients that pain will return if a drug is stopped –
analgesia doesn’t cure the pain, it only controls it.
Explain the concept of the stepwise approach (use Tool 14 as a visual aid or draw the
ladder on a flip chart). Ask the class to give examples of drugs in the different steps.
Remember that step 1 drugs can continue in steps 2 and 3, working alongside the
opioids. However step 2 drugs are not used alongside step 3 drugs. When morphine
is started, weak opioids are stopped as they will not add any extra analgesic effect, but
the step 1 drugs can continue if they are helping.
Finish the presentation with a chance for participants to ask questions.

Morphine facts and fears (10 minutes)

Note: the use of morphine is taught as a separate module which must be included if the
participants have, or will soon have, access to morphine.
?
l ASK ABOUT THE AVAILABILITy OF MORPHINE IN THE COUNTRy AND IN
PARTICIPANTS’ PLACES OF WORK.
l CLARIFy LOCAL REGULATIONS ON MORPHINE USE (WHO CAN PRESCRIBE,
DISPENSE IT ETC).
l ASK ABOUT PEOPLE’S ExPERIENCE OF USING MORPHINE – HAVE THEy EVER SEEN
IT USED?
l ASK WHAT THEIR CONCERNS ABOUT MORPHINE ARE.

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 Fears about morphine include:
l That it causes addiction. (This does not happen when it is taken for pain – see page 27
of the Toolkit).
l That it is a lethal drug causing respiratory depression. (It will only cause respiratory
depression in an overdose and in fact it can be used very effectively for breathlessness
(page 44 of the Toolkit).
l That it is very sedating and consequently patients taking it won’t be able to live a
normal life. (The sedating effect of morphine wears off over a few days and a patient is
capable of leading a normal life while using morphine for pain).
l That starting a patient on morphine means the end is near. (This is not true as patients
may use morphine for pain for many years, or they may be able to discontinue it if the
pain gets better).

Adjuvant drugs (20 minutes) (Pages 29–31 of the Toolkit)

There are four different types of pain
helped by adjuvants. Pains helped by adjuvant drugs
Teach the importance of recognising 1. Severe swelling or inflammation
these different pains in order to give = steroids
the right drug. There is an opportunity
2. Nerve damage pain (neuropathic
here to revise some of the pain
pain) = antidepressants
assessment session.
or anticonvulsants
Remember adjuvants can be used on all
3. Muscle spasm = Diazepam
three steps of the pain ladder.
or Baclofen
4. Abdominal cramp = Hyoscine
Butylbromide (‘buscopan’)

QUIZ ON THE ANALGESIC LADDER (30 minutes)

Aim: to check understanding of the analgesic ladder.
Use Resource 6
Let the participants work alone or in pairs.
Give each one a copy of Resource 6.
They have 10 minutes to answer the questions – encourage them to use the Toolkit
to help them.
Go through the quiz and discuss all the answers. Use the Toolkit together to check
wrong answers.
Check if the participants have any further problems.

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 Summing up (five minutes)
Run through the key points of the session.

Ask everyone to think of the most important thing they have learned and what
one thing they want to do differently as a result. They should add this to their list of
personal learning points (see Module 1).

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 MODULE 10 yOU CAN USE MORPHINE
This teaching module should be used in situations where morphine is available or will be
available very soon. If there is no access to morphine, it can be left out.
AIM OF SESSION
To improve knowledge and confidence in the use of morphine.

LEARNING OBJECTIVES
By the end of the session, participants should be able to:
l Explain the place of morphine in the World Health Organization pain ladder.
l Describe the side effects of morphine and how to deal with them.
l Explain how to deal with break through pain.
l Calculate and adjust the dose of morphine.
l State the legal requirements for prescribing morphine.
l Describe the signs of morphine overdose.

Time
Topic Teaching methods (minutes)
Preparations Presentation 5
Side effects Presentation and quiz 15
Morphine Prescribing Lecture and demonstration 25
Morphine calculations Working in pairs or threes 15
Reporting back 15
Legal requirements Presentation 5
Morphine overdose Calling out 5
Summing up Reflection 5

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 Morphine preparations (five minutes)
There are several preparations of morphine (see page 27 and 28). Find out which is
available in your country.
If it is liquid morphine, make sure you know which dilution is being used. This is commonly
5mg/5ml or 10mg/5ml. A strong solution, 50mg/5ml may also be used.
If MST tablets are available, make sure the participants understand how to use these (see
page 28 of the Toolkit).

Side effects of morphine (five minutes)

These are listed on page 29 of
the Toolkit. Side effects of morphine
you could also put them up on an l Constipation – prescribe laxative
overhead projector, PowerPoint slide or Never gets better.
flipchart (prepared beforehand).
l Nausea – prescribe anti-emetic.
Explain that sometimes the side effects Improves 3-4 days.
may be useful, eg treating diarrhoea
l Drowsiness – improves 3-4 days.
(see page 45 of the Toolkit).
l Sweating and Itching – less common.

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 After you have taught the side effects of morphine, cover the flip chart list and do the
following quiz. It will help you to know if the participants have understood so far.
TRUE/FALSE EXERCISE, WHOLE GROUP (10 minutes)
Aim: to assess participants’ understanding of the side effects of morphine.
Prepare sheets of paper, two for each participant. One has a smiley face and says TRUE.
The other has a sad face and says FALSE.
Read out the questions below one by one. For each question the participants must
hold up their papers, or if you prefer, ask participants to stand up if they agree with the
statements and remain seated if they disagree.
Questions
1) Nausea caused by morphine continues as long as you keep taking it. (F)
2) If the patient is itching you must stop the morphine. (F)
3) Constipation always occurs when taking morphine. (T)
4) Patients on morphine will always be drowsy and cannot do any useful work. (F)
5) If a patient on morphine has diarrhoea you should continue to prescribe a laxative.
(F)
6) Morphine must not be prescribed with anti-emetics. (F)
7) Patients starting morphine must be warned about addiction. (F)
8) Constipation caused by morphine improves after 3-4 days. (F)
9) If a patient on morphine is very drowsy after a few days of starting it is best to
decrease the dose. (T)
10) Morphine may be used to help breathlessness in a patient who has no pain. (T)

you may want to add some questions of your own. When the cards are put up, if
everyone is correct you can be reassured they have understood you so far.

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 Morphine Prescribing (25 minutes) (page 28 of the Toolkit)
The most important thing to teach about morphine is that, unlike any other drug,
there is no standard dose. The correct dose is the dose which controls the pain. There
is no upper limit to the amount that can be given.
All patients should be started on a low dose which is increased until the pain improves.
The starting dose may be as low as 1.25mg 4 hourly in elderly or frail patients.
If the patient has already had a step 2 weak opioid like codeine or tramadol then the
dose of morphine should start a little higher, eg 5mg 4 hourly. The weak opioid must
be stopped.
The pain must be re-assessed frequently, at least daily.
Morphine must be given four hourly if it is a normal release formulation (eg liquid
morphine). If it is given six hourly the pain will return before the next dose is given.
Always check that the patient has been receiving the prescribed dose before you
consider increasing it.
If the pain is not controlled, increase the dose by 30–50% (see page 28 of
the Toolkit).
If the patient has pain between the four hourly doses it is possible to give a
breakthrough dose. This should be equal to the four hourly dose and the next four
hourly dose is still given at the correct time. These must be recorded and the patient
must be asked if they were effective.
When the patient is taking four hourly morphine, give a double dose before sleeping at
10pm and miss out the dose in the middle of the night (2am).
If you have long acting MST tablets available you must also teach about these. To find
the appropriate dose for these, start the patient on normal release (NR) morphine. Add
up the total dose they have taken in 24 hours and divide this by two. This will be the
strength of tablet you will need (see example page 28 of the Toolkit).
Look at the chart for recording morphine doses (Tool 7).

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 If you are going to be using liquid morphine it is useful to bring a bottle to
show participants.

Demonstration of dispensing morphine

Have a 2.5ml, 5ml, and 10ml syringe and a medicine bottle full of coloured water.
If the solution is 5mg/5ml, get a volunteer participant to come up and draw up a
2.5mg dose.
Try this with a few more doses and volunteers.
Change to 50mg /5ml solution and ask a volunteer to draw up a dose of 60mg.

MORPHINE CALCULATION EXERCISE (15 minutes)

Aim: to improve competence in adjusting morphine.
Use Resource 7
Divide into pairs or threes and give out the papers of morphine calculations.
Do at least the first two or three together with the whole group so they can see what is
expected of them, then let them work through as many as they can.
FEEDBACK (15 minutes)
Work around the room getting answers from each pair to a different question. Sort out
problems as you go.

Legal requirements (five minutes)

Each country will have its own legal requirements and these must be known by
the lecturer.
Points to cover must include:
Where morphine is obtained from.
Where and how morphine is stored.
Who is legally allowed to prescribe it (eg doctors, clinical officers, nurses).
On what form is must be prescribed.
What records must be kept, eg a controlled drug book.

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 Morphine overdose (five minutes)
The signs of morphine toxicity are on page 29
of the Toolkit. Signs of morphine overdose
Let participants shout out any they know of. l Drowsiness that does
not improve
Have a slide, overhead projector or flip chart
prepared to refer to after they have finished l Confusion
calling out.
l Hallucinations
Go through the points.
l Myoclonus (sudden jerking of
Explain that dehydration or renal failure can the limbs)
cause morphine to accumulate in the body,
l Respiratory depression
causing toxicity.
(breathing rate slowed down).

Managing toxicity
Reduce the dose by 50% or stop a dose and start again at half the dose.
If you are very concerned stop completely.
If it is available, naloxone will reverse the action of morphine.

Summing up (five minutes)

This module contains some very important information for those about to use morphine
for the first time. Summarise the main points and give time for questions.

Ask everyone to think of the most important thing they have learned and what
one thing they want to do differently as a result. They should add this to their list of
personal learning points (see Module 1).

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 MODULE 11 yOU CAN HELP DIFFERENT
SyMPTOMS 1
AIM OF SESSION
To demonstrate the use of the Head-to-toe guide for symptom control.

LEARNING OBJECTIVES
By the end of the session, participants should be able to:
l Find and explain symptom control measures in the Head-to-toe guide.

Time
Topic Teaching methods (minutes)
Recap of analgesic ladder Question and answer large group 5
Explain Head-to-toe guide Presentation 10
Demonstration Work through two examples 15
Group work on case studies Group discussions 30
Feedback on cases Each group presents with flipchart 25
Summing Up Reflection 5

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 Revision of analgesic ladder (five minutes)
Briefly go over the analgesic ladder – you could invite a participant to draw the ladder
on the flipchart and other participants call out the drugs for each step including
adjuvant drugs.

Head-to-toe symptom control (10 minutes)

Ask the group to call out different symptoms they see in their patients.
you may have replies such as cough, breathlessness, pain, vomiting etc.
Ask which of these they find easy to help and which are difficult.
Ask the group if they have read chapter 5 (page 23) and if they have any questions.
Revise treat, care, prescribe algorithm.
Explain the Head-to-toe approach:
This starts with general whole body symptoms like pain (page 26), fever (page 32),
rashes (page 33), wounds (page 34), seizures or convulsions (page 35) confusion (page
36), anxiety and sleeplessness (page 37) and depression (page 38).
It then goes through the body from head to toe with other symptoms like poor
appetite and weight loss (page 39), sore mouth and difficulty swallowing (page 40),
nausea and vomiting (page 41) etc.
Several options are given for managing each symptom. Not all of them will be
appropriate in every situation.
Explain you are not going to work through each symptom together as all the
information is there in the Toolkit.

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 DEMONSTRATION OF HEAD-TO-TOE GUIDE (15 minutes)
Use Resource 8
Work through the first two examples from Resource 8 together.
1) you are a nurse visiting a man at home with renal failure. He is very swollen all over
and very breathless. His wife died a year ago and now his 18-year-old daughter is
caring for him.
What could you do for his breathlessness? (page 44 of the Toolkit)
This could be acted out to make it more memorable.
Get a volunteer to be the patient.
Get everyone to turn to page 44 of the Toolkit.
As a nurse you could not treat but you could do all the things in the care panel.
Demonstrate positioning the patient, fanning them, teaching them to slow their
breathing etc.
What might you ask the doctor to prescribe?
Work through the second example using page 41 of the Toolkit.

GROUP WORK – CASE STUDIES (30 minutes)

Aim: to improve knowledge of symptom control.
Use Resource 8
Divide into groups of four to six people.
Work through the case studies in Resource 8.
Using the Toolkit, describe what can be done to help the patient. This will depend on
what the health worker in the case study can do (eg volunteers will be limited to the
‘care’ measures, doctors can prescribe etc).
If using drugs they should give specific details such as dose and frequency of
administration.
Each group should start with a different case.
FEEDBACK (25 minutes)
Each group presents a case in turn.
Make sure the cases presented cover different symptoms.
Then go around again, presenting as many cases as time allows.

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 Summing up (five minutes)
Run through the key points of the session.

Ask everyone to think of the most important thing they have learned and what
one thing they want to do differently as a result. They should add this to their list of
personal learning points (see Module 1).

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 MODULE 12 yOU CAN GIVE END
OF LIFE CARE
AIM OF SESSION
To improve knowledge of end of life care.

LEARNING OBJECTIVES
By the end of the session, participants should be able to:
l list the signs of the terminal phase
l discuss ways of caring at the end of life
l explain non-oral routes of drug administration
l discuss ethical issues around end of life care.

Time
Topic Teaching methods (minutes)
What is end of life? Presentation, calling out 10
Fears of patient and family Buzz groups and feedback 15
Treat, care, prescribe Presentation 15
Difficult decisions Presentation 10
Case studies Discussion/small groups/
buzz groups 35
Summing up Reflection 5

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 What do we mean by end of life? (10 minutes)
It can be very difficult to predict or define the ‘end of life’. Usually when people talk about
end-of-life care, or terminal care, they mean care during the last few days or weeks
of life.
Sometimes people think that palliative care is the same as terminal care. This is wrong
because as we have already seen, palliative care has much to offer from the early stages
of a life-threatening illness and is about quality of life, not just quality of death.
It is not always easy to know when a person is coming to the end of life, or is in the
‘terminal phase’. Sometimes they may appear to be dying and then improve, so it is
important to keep an open mind and not to make fixed predictions. It is also important
to monitor the patient carefully and explain to them and the family what is happening, so
that they can prepare themselves for death as much as possible.

?
ASK THE GROUP WHAT CHANGES THEy SEE IN PATIENTS WHO ARE NEAR
TO DEATH.

Turn to page 51 of the Toolkit all together and go through the list given in the
first paragraph.

Fears of the patient and family (15 minutes)

Patients can be fearful when they know the end is near, though not always. For some it
comes as a relief. It can also be a frightening time for family, especially if they have not
cared for a dying person before. Understanding and addressing these fears is a major part
of end of life care.
BUZZ GROUPS
Divide the room in half. Buzz groups in one half discuss fears the patient may have,
the other half discuss what the family may fear (five minutes).
FEEDBACK – with the flipchart, making lists for the family and the patient
(10 minutes).

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 There are many possibilities – there are no ‘right’ answers, the aim is to get people
thinking. Here are some examples:
Patient
l Dying in pain
l Loss of dignity, eg incontinence, confusion
l Dying alone
l Dying with many people around
l What will happen to them after death?
Family
l Being alone with loved one when they die
l Not knowing what to do if the patient is in pain
l Not being able to cope with nursing care at the end
l Grief reaction

We need to reassure the patient and family that:

– Pain and distressing symptoms can almost always be controlled.
– The palliative care team will continue supporting throughout.
Explaining what is happening and what is likely to happen reduces fears
and anxiety.

Treat, Care and Prescribe at the end of life (15 minutes) (page 51 of the Toolkit)
Treat
Once the patient is dying it is usually no longer appropriate or possible to treat infections
and other specific conditions. The family may find this hard to accept and we may need
to spend time counselling them, explaining the situation and looking at the benefits and
burdens of treatment (see below).
Care
Ask everyone to turn to page 51 of the Toolkit and go through the points on care at the
end of life.
Prescribe (page 52 of the Toolkit)
Ask everyone to turn to page 52 and go through the points on prescribing – most
medication can be stopped but continue symptom control drugs as long as they
are needed.

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 Non-oral routes (page 50 of the Toolkit)
What you teach here will depend on local drug and equipment availability and also the
skill mix of the participants. Subcutaneous and nasogastric routes may be feasible and
can be particularly useful if there is a problem such as cancer of the mouth. However,
rectal administration of simple drugs such as paracetamol, NSAIDs and diazepam is
achievable and if available, oral morphine solution works well bucally.
Difficult decisions in end of life care (presentation 10 minutes)
It can be hard to decide about:
l withdrawing treatment – if/when it is right to stop treatment which is no
longer helpful
l withholding treatment – deciding not to give a certain treatment because you think it
will not help.
Both professional and family carers may be concerned about how to make ethical
(morally correct) decisions. They may feel that they are responsible for causing the death
of a patient if they withhold or withdraw treatment.
Guiding principles:
l Always look at the benefit/burden balance page 23 of the Toolkit.
l The aim of palliative care is not to prolong life at any cost, but to give quality of life.
l Palliative care does not aim to shorten life in the face of suffering, but to alleviate
the suffering.
l We must listen to the patient’s and family’s wishes, although sometimes these may
contradict each other and we are not necessarily bound to obey them. This is where
the decisions can be very hard.

Principles for end of life care

l Benefit/burden balance
l Not aiming to prolong life
l Not aiming to shorten life
l Aim is quality of life
l Listen to patient and family

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 Case studies – Resource 9 (35 minutes)
There are four cases in Resource 9 which illustrate some of these points.
You could use them in different ways according to how the participants interact and how
much time you have.
It may be good to work through one case all together first, to demonstrate how to apply
the principles.

WHOLE GROUP
DISCUSSION BUZZ GROUPS SMALL GROUPS
Read out a case and Give out Resource 9.
Read out one case and
then everyone discusses
discuss it all together, Each group works on
it with their neighbour
then move through the a different case and then
before discussing in the
cases as time allows. presents to the class. This
whole group.
will take the most time.
If the group participates
Then move on to
well, this will get through
the next case in the
more cases in the time.
same way.

Trainer’s notes for the cases

Case 1:
l The woman is dying.
l Giving food and fluid would be prolonging the dying process, not alleviating suffering.
l The aim is to keep her comfortable, not prolong life.
l Our first duty is to the patient, not to the son.
Case 2:
l The man has a progressive, incurable disease.
l He might die on the way to hospital.
l A transfusion will give only temporary benefit, if any.
l Our first duty is to the patient, not to the brother.

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 Case 3:
l The woman knows that her disease cannot be cured.
l She has decided that the burden of treatment outweighs benefit.
l The patient’s wishes should be respected.
Case 4:
l The child is going to die soon whatever we do.
l Morphine will alleviate his suffering.
l If he is distressed by the oxygen it should be stopped – our aim is to make
him comfortable.

Summing up (five minutes)

Run through the key points of the session.

Ask everyone to think of the most important thing they have learned and what
one thing they want to do differently as a result. They should add this to their list of
personal learning points (see Module 1).

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 MODULE 13 yOU CAN HELP CHILDREN
AND FAMILIES
AIM OF SESSION
To improve understanding of the needs and support of children in a palliative
care setting.

LEARNING OBJECTIVES
By the end of the session, participants should be able to:
l list things that children need when they are healthy and when they are sick
l describe important communication skills for children
l discuss the value of telling the truth to children
l identify ways of supporting families
l respond confidently to difficult questions.

Topic Teaching methods Time

(minutes)
Children’s needs Participants call out 10
Parents and siblings Group work 20
Communicating with children Q&A revision, presentation 10
How much should we say? Buzz groups, presentation 10
Breaking bad news Q&A revision, presentation 10
Practising talking with children Interactive role play/difficult
questions in pairs 25
Summing up Reflection 5

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 What do children need to be physically and emotionally healthy? (five minutes)

?
ASK THE CLASS TO CALL OUT AS MANy PHySICAL AND EMOTIONAL NEEDS AS THEy
CAN THINK OF AND WRITE THEM ON THE FLIPCHART.

The list may include:

Physical Emotional
l food l love
l safety l physical affection
l housing l play
l clothes l learning, stimulation
l physical exercise l attention and value
l encouragement, affirmation
l being part of a family or community

What do children need when they are sick? (five minutes)

?
ASK THE CLASS TO CALL OUT THE ADDITIONAL THINGS THAT SICK CHILDREN NEED
AND WRITE THEM ON THE FLIPCHART.

The list may include:

l medical treatment
l symptom control
l to have family around them
l to be in familiar surroundings if possible
l to have their questions answered
l not to be scolded for their reactions to their situation, eg anger, withdrawal
l to be reassured that they will be cared for.

Emphasise that as well as medical treatment, children still need all the things in the
first list when they are sick. They still need play, learning, stimulation etc – these things
are often neglected but are part of our holistic care for sick children.

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 Parents and Siblings (20 minutes) (page 55 of the Toolkit)
Looking after a sick child is very demanding, especially when you know that the child will
not get better.
GROUP WORK ON PARENTS AND SIBLINGS (10 minutes)
Aim: to discuss the needs of the families of sick children.
1) What are some of the challenges families face – parents, siblings,
other relatives?
2) In what ways can we support them?
FEEDBACK (10 minutes)

Answers to 1) may include:

l finance – cost of medicines, loss of income due to caring
l tiredness – work of caring, no time for their own needs
l anxiety/grief/stress/anger/guilt
l siblings – lack of attention, missing school
l extra burden of orphans in addition to own responsibilities
l strain on family relationships.
Answers to 2) may include:
l Appreciate their hard work, tell them how well they are doing.
l Avoid scolding and blame if their care has not been good – understand their difficulties
and look at ways of improving care from now on.
l Involve them in decisions – they are partners in care.
l Encourage them to share out the work of caring in the family and draw on. support
from their community – everyone needs a break sometime.
l Don’t forget to pay attention to siblings.
Supporting families
Refer to the list on page 55 of the Toolkit.
l Appreciation
l Avoid blame
l Involve them in decisions
l Share the work

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 Communicating with children (10 minutes) (page 54 of the Toolkit)
Recap communication skills from session 5 – ask for as many non-verbal and verbal skills
as they can remember.
All these skills are important when talking with children.
Special considerations are:
Talk with children, not about them, to the parents.
Get on the same level – don’t stand up if you are talking to a child who is on the floor –
get down to where the child is.
Don’t rush them and don’t interrupt.
Listen attentively and show that you value their opinion.
Use language they can understand – this will vary according to the age of the child.
Answer questions honestly.
Never lie.
Never make promises that you cannot keep.
For the first meeting, talk with a parent/guardian present so that they feel safe. Later,
they may want privacy with you.
Respect their personal space. Wait until they come to you, or at least wait to be invited
in before you touch them.
Try to create a child-friendly environment with some toys, pictures or crayons.

How much should we say to children? (10 minutes)

BUZZ GROUPS
The trainer reads out the following scenario.
Buzz groups discuss in what their response would be. Encourage them to say what they
think, not what they think you want to hear.
you are looking after a 12-year-old with a bone tumour in his leg which has spread to
his lungs. There is no treatment available. He asks you “Am I going to get better?”
Should you tell him the truth?

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 you could take a poll of the whole group and see how many people took each point of
view, or hear comments from a few groups.
Breaking bad news to children or answering difficult questions about illness and
death is not easy. Some people feel that children should not be told anything that
might upset them. Many health workers are frightened of talking about difficult issues
with children and so they say nothing. Parents often don’t want their children to be
told anything.
However:
Children usually know much more than we think.
The evidence shows that children and families cope better with illness when there is
open communication.
Children have the right to have their questions answered honestly.
Talking about their illness allows them to express their fears and feelings and reduces
their sense of isolation.
For these reasons, when parents do not want their child to be told anything, we need to
explore their reasons and explain the points above. Ultimately we have to respect their
wishes even if we do not agree with them. However, we should be clear that we will not lie
to a child even if the parents ask us to.

Breaking bad news to children (10 minutes) (page 54 of the Toolkit)

Recap the BREAK NEWS checklist, participants calling out the steps. All these steps are
relevant for children, although we may be more likely to use them when responding to
children’s questions than sitting down with the intention of breaking bad news. Children’s
questions often come at unexpected times so it is important to have thought through
ways of responding.
These conversations take time. If you are feeling rushed, take a deep breath and
prepare yourself.
Answer questions with questions until you are sure you are on the right wavelength.
Remember, children and adults think differently and see the world differently. You
could respond to the question above “What do you think is going to happen?” “What
has made you ask that now?”
But do give an honest answer at some point – children will lose trust in you if they think
you are avoiding the issue. It gives the message that the answer is too terrible to bear
and that you do not respect the questioner.
Be prepared to say you don’t know: “I know you really want to know the answer,
and if I knew it I promise I would tell you. But I am afraid I honestly don’t know at
the moment.”

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 Practising communicating with children (25 minutes)
Here are two options for practising. The interactive role play is a good learning tool but
requires careful facilitation (see page 10 of this training manual). Participants who are less
familiar with role play may find the ‘difficult questions’ easier.

DIFFICULT QUESTIONS INTERACTIVE ROLE PLAY

Aim: to practise communicating Aim: to practise communicating with
with children. children and carers.
Use Resource 10 Use Resource 11
Participants work in pairs. Reassure the participants that we all
recognise this is a challenging area so we
For each question, discuss how you
will all learn together.
might answer the question with a
question (see above and page 54 of Explain the interactive role play method
the Toolkit). as on page 10 of this training manual.
Think how the child might then respond If possible, start with a trainer in one
and where the conversation may lead. or more of the roles and then swap
participants in quickly.
Role play the scenario to practise using
the questions. Work through as many scenarios as
time allows.

Summing up (five minutes)

Run through the key points of the session.

Ask everyone to think of the most important thing they have learned and what
one thing they want to do differently as a result. They should add this to their list of
personal learning points (see Module 1).

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 MODULE 14 yOU CAN HELP DIFFERENT
SyMPTOMS 2
AIM OF SESSION
To demonstrate the use of the Head-to-toe guide for symptom control in children
and adults.

LEARNING OBJECTIVES
By the end of the session, participants should be able to:
l describe how to assess pain in children
l list non-drug treatments for pain in children
l find and explain symptom control measures in the Head-to-toe guide.

Time
Topic Teaching methods (minutes)
Pain in children Presentation, calling out 20
Symptom control principles Presentation, calling out 10
Symptom control cases Group work 30
Feedback on cases Groups present 25
Summing up Reflection 5

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 Pain in children (20 minutes) (page 56 of the Toolkit)
We need to think about pain in every child we see because often they do not or cannot
tell us they are in pain.
How do we know a child is in pain?
l Listen to the child
l Listen to the carer
l Observe with your eyes

What are the signs that a child is in pain?

?
ASK THE PARTICIPANTS TO CALL OUT SOME SUGGESTIONS, AND HAVE A LIST
READy (EG ON FLIPCHART) OR ASK EVERyONE TO TURN TO THE LIST ON PAGE 56
OF THE TOOLKIT.

Signs that a child is in pain

l crying and distressed facial expression
l not wanting to move
l poor concentration
l irritability or restlessness
l difficulty sleeping
l increased breathing rate or heart rate

Look at the ‘faces score’ pain scale for children in Tool 2.

There are non-drug measures that can help to reduce a child’s pain.
Ask participants to call out suggestions and have a list ready, or look at page 56 from
the Toolkit together.
The drug treatment of pain is the same as for adults, but using Tool 16 to find
paediatric doses.
(You can revise the analgesic ladder briefly if appropriate).

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 Non-drug measures to reduce pain in children
l make them feel secure
l keep them in familiar surroundings
l make them feel valued
l use touch
l feeding
l heat or cold
l play
l use music or stories
l increased breathing rate or heart rate

Symptom control in children (10 minutes)

?
ASK THE PARTICIPANTS WHAT SyMPTOMS THEy HAVE SEEN IN CHILDREN. THE
GROUP CAN CALL OUT THEIR ANSWERS.
ASK THEM WHICH ONES THEy FIND EASy TO HELP AND WHICH ARE DIFFICULT.

Revise treat, care, prescribe.

Explain that you are not going to work through each symptom together as all the
information is in the Toolkit, in the Head-to-toe guide and also:
l Pages 57-58 of the Toolkit
l Paediatric drug doses Tool 16.
It may be useful to turn to these pages all together, to see where the information can
be found.
The group will use case studies to learn and to practise using the guide, in the same way
as they did in Module 11. Some of the examples are paediatric cases, some are
for adults.

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 GROUP WORK – CASE STUDIES (30 minutes)
Aim: to improve knowledge of symptom control.
Use Resource 12
Divide into groups of four to six people.
Work through the case studies in Resource 12 – these are slightly more
challenging than those for Module 11. It may be helpful to work through the first one
all together.
Using the toolkit, describe what can be done to help the patient. This will depend on
what the health worker in the case study can do (eg volunteers will be limited to the
‘care’ measures, doctors can prescribe etc).
If using drugs, give specific details such as dose and frequency of administration.
Each group should start with a different case.
FEEDBACK (25 minutes)
Each group presents a case in turn.
Make sure the cases presented cover different symptoms.
Then go round again, presenting as many cases as time allows.

Summing up (five minutes)

Run through the key points of the session.

Ask everyone to think of the most important thing they have learned from this session
and what one thing they want to do differently as a result. They should add this to their
list of personal learning points (see Module 1).

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 MODULE 15 yOU CAN TELL OTHERS
AIM OF SESSION
To improve palliative care advocacy skills.

LEARNING OBJECTIVES
By the end of the session, participants should be able to:
l define advocacy
l explain who should to be informed about palliative care
l create appropriate advocacy messages
l describe effective ways of presenting advocacy messages.

Time
Topic Teaching methods (minutes)
Who do we need to inform? Buzz groups, flipchart feedback 15
What messages should we give? Small group work 25
How will we tell them? Small group work 30
General principles Mini-lecture 15
Summing up Review and reflection 5

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 What is advocacy? (page 59 of the Toolkit)
Advocacy is the process of informing and influencing people in order to bring
about change.

Who do you want to inform about palliative care? (15 minutes)

BUZZ GROUPS
Make a list of groups and individuals who should be informed about palliative care.
FEEDBACK (10 minutes) – go around the room and compile list on flipchart
(eg general public, nurses, doctors, community leaders, government, church
leaders etc).

What messages do we want to give about palliative care? (25 minutes) (page 59
of the Toolkit)
If we want to spread the word about palliative care, we need to think about what we want
to say. This may vary for the different people we want to inform.

GROUP WORK ON PALLIATIVE CARE MESSAGES (25 minutes)

Aim: to create appropriate advocacy messages.
l Make a list of the messages you would like to give about palliative care.
l If you could only present three messages, which would you choose?
l Then select the most important message for each of the groups listed above
(15 minutes).
FEEDBACK (10 minutes) – each group presents their messages. See list on p59 for
ideas – but there are many other possibilities.

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 Ideas for getting the messages across
After giving feedback on advocacy messages and discussing these with the whole
group, the participants return to their small groups to discuss ways of presenting
these messages.
Give each group a target ‘audience’ eg:
l colleagues in workplace
l local community leaders
l healthworkers nationally
l general public
l government policy makers
l others (could be patient groups, religious groups etc).

GROUP WORK ON ADVOCACY METHODS (30 minutes)

Aim: to discuss how to present messages to different groups.
The group discusses advocacy ideas for their target audience (15 minutes)
Encourage them to be specific, practical and realistic, eg if they suggest doing drama,
what will they put in the drama? If writing a letter, what will they write? They should
look at the advantages and disadvantages of different ideas, what each might achieve
and which would be most effective.
FEEDBACK (15 minutes) – each group presents, others comment and add their ideas.
See list on pages 59-61 but there are many other possibilities.

Look together at advocacy tools 11,12,13 – ask all the participants to turn to them and
discuss briefly how they might use them. If possible, print or copy a few leaflets (Tool
11) and fold them into three sections so that participants can see how
they look.

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 Principles of advocacy (15 minutes)
Give a brief presentation on some of the guiding principles of advocacy (put headings on
a visual aid if you wish).
Be positive, presenting possible ways forward.
Be realistic, presenting ways forward that are achievable.
Present important, relevant facts and statistics, but do not overwhelm with too much
information. Make sure you collect data about your own work – you can use and adapt
the data collection form for this (Tool 10).
Use real-life stories of people and projects as well as statistics.
Find out who are the key people making the decisions, and target them.
Try to understand those people’s concerns, assumptions and prejudices.
Meeting face-to-face is important for relationship-building, but have facts and
proposals down on paper to leave with the person so that they will not forget what you
have said.

Some principles of advocacy

l Be positive
l Be realistic
l Know your facts
l Use real stories
l Meet face to face

Summing up (five minutes)

Run through the key points of the session

Ask everyone to think of the most important thing they have learned and what
one thing they want to do differently as a result. They should add this to their list of
personal learning points (see Module 1).

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 MODULE 16 yOU CAN BUILD A TEAM
Some aspects of teamwork are discussed in modules 2 and 6 (page 29 and 49 of this
training manual). you might want to use this module as well for groups who are not
used to working in teams, or who are forming new teams to deliver palliative care.

AIM OF SESSION
To improve understanding of good teamwork.

LEARNING OBJECTIVES
By the end of the session, participants should be able to:
l describe characteristics of good and bad teams
l explain the need for teamwork in palliative care
l discuss how team members can be trained.

Time
Topic Teaching methods (minutes)
Team exercise Building a giraffe 15
What makes a good team Group work and feedback 30
Importance of teams in
palliative care Call out, ideas 10
Training the team Group work and feedback 30
Summing up Reflection 5

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 What is a team?
A group of individuals working to achieve a common goal.
TEAM EXERCISE (15 minutes)
Aim: to have a taste of teamwork.
Form ‘teams’ of five people.
Give each team a large pile of newspapers and a roll of cellotape. Their task is to make
a model of a giraffe out of the newspaper in five minutes.
Hopefully this will generate plenty of laughter. At the end you could give a prize for the
best giraffe.

What makes a good team? (page 13 of the Toolkit)

TEAM EXERCISE (15 minutes)
Aim: to discuss how teams work.
Return to the groups which made the giraffes in the teams and ask them to:
l discuss how (or if) they worked as a team to build their giraffe
l reflect on other teams they have experienced
l list the characteristics of good and bad teams.

When you give them these questions, explain what you mean, eg:
l Discussing how they worked together.
l Did someone become the leader?
l Did they work together well?
l Did they disagree about how they would do it? How did they decide what to do?
l Was there anyone who didn’t join in? If so, why?
Reflecting on teams you have been part of (could be work-related but also think of others,
eg committees, sports, choir, youth work etc)
Was it a good team? Did you enjoy being a part of it? Did it achieve its goals?
What made the team good/bad?

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 Feedback (15 min)
The groups report back on their discussions.
Make lists of characteristics which are good and bad.
Some possibilities are:
Good
l Everyone understands and is committed to the goal.
l Members respect each other.
l People know their roles.
l Understand others’ roles.
l Feel valued and appreciated.
l Communication good, everyone kept in the picture.
l Members help each other when one is struggling.
l Work for common aim rather than own glory.
l Approachable leader.
l Members encouraged to develop skills.
l Team has fun together.
l Disagreements are discussed and dealt with.
Bad
l Unclear of the goal.
l Members do not care about the goal.
l Critical of each other (unconstructive criticism).
l Members are lazy.
l Disagreements and hurts are buried and never discussed.
l No development of individual skills or learning.
l Members unconfident to do their task.
l Competing rather than complementing each other.

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 TOP TIP It is not necessary to elicit all of these points – see what participants
come up with – but the key points to include are:

Good teamwork
l Commitment to the goal and to each other
l Clear roles
l Respect for each other
l Sharing and support
l Good communication
l Dealing well with conflict

The importance of teams in palliative care (10 minutes) (page 13 of the Toolkit)
Possible members of a palliative care team are discussed in Module 2.
Why is a team important for palliative care?
l Holistic approach – the different aspects of care call for a mixture of skills and one
person may not have all the skills which are needed. A multidisciplinary team is
the ideal.
l It is hard work – emotionally draining.
?
ASK THE GROUP TO CALL OUT SOME OF THE CHALLENGES AND STRESSES AND
WRITE THEM ON THE FLIPCHART.

The list might include:

– physical – tiredness, lack of sleep, no time to meet our own needs
– emotional – sadness, frustration, anxiety
– social – overwork can result in less time for other tasks and for family/
social activities
– spiritual – facing questions of suffering, loss of hope, questioning our
own beliefs.
Some of the ways of dealing with these stresses are discussed in Module 12.

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 Training the team (page 14 of the Toolkit)
Training and supervision is important for:
l improving patient care
l personal development of team members
l increasing confidence and giving support to team members
l job satisfaction
l team building.

GROUP WORK ON TRAINING THE TEAM (15 minutes)

Aim: to discuss different training needs and methods.
you could mix the groups for this exercise.
l List some of the members of a palliative care team.
l What training might each of these need? (eg priority topics).
l How could this training be given? (eg lectures, attachments, demonstrations).
FEEDBACK (15 minutes)

TOP TIP The aim is not to create an exhaustive list but to get people thinking
about different options.

Summing up (five minutes)

Run through the key points of the session.

Ask everyone to think of the most important thing they have learned and what
one thing they want to do differently as a result. They should add this to their list of
personal learning points (see Module 1).

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 MODULE 17 CONFIDENTIALITy
Confidentiality is discussed briefly in Module 4 (page 40 of this training manual).
you might want to use this more detailed module if you have time in your course.

AIM OF SESSION
To improve understanding of confidentiality and how it applies to palliative care.

LEARNING OBJECTIVES
By the end of the session, participants should be able to:
l understand the meaning of confidentiality
l know the reasons why it is important
l see the value and place of the team in confidential issues
l look at some difficult problems involving confidentiality.

Time
Topic Teaching methods (minutes)
What is confidentiality? Call out definition on flip chart 5
Why do we need it? Buzz groups, short talk 15
How is the team involved? Thought exercise, lecture 10
Case studies Worked example, group work, 35
Feed back on group work 20
Summary Reflection 5

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 What is confidentiality? (five minutes)
?
TRy TO GET THE PARTICIPANTS TO GIVE yOU THEIR IDEAS AS TO WHAT
CONFIDENTIALITy IS. IF THE GROUP IS CONFIDENT yOU CAN GET THEM TO CALL OUT.
OTHERWISE USE THE BUzz GROUP METHOD.

you may get answers like:

l not talking about a patient
l not revealing the results of an HIV test
l keeping things secret
l being careful about what you say.

Confidentiality
…is the keeping of secrets. Maintaining confidentiality means not disclosing
information about a patient to other people unless you have the patient’s
permission to do so.

Why do we need confidentiality? (10 minutes)

Explain that it is very important to be able to trust someone who you give personal
information to or who has information about yourself.
THOUGHT EXERCISE (15 minutes)
Aim: to think why confidentiality is important.
Ask participants to close their eyes and imagine they have a serious illness.
Ask yourself:
l What do I want others to know about my illness?
l Are there some people who I don’t want to know something about myself?
l Why don’t I want this information shared with them?

Either in buzz groups or calling out, get the participants to look at why confidentiality
is important.
Write their answers on the flip chart then compare their answers with a chart you have
prepared with these points on it.

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 Explain that once trust has been
broken, that person may never Why do we need to respect confidentiality?
trust you again.
l To maintain trust
The relationship between you and
l To show respect
the person whose trust you have
broken will change. l To value the person
Agreeing with the patient on l To prevent the person coming to harm
what should remain confidential
shows the patient you respect them even if you do not agree with their decision.
This particularly involves the problem of a husband or wife who refuses to tell their
respective partner they are infected with HIV.
This point may also involve the fourth point on the slide, a wife may fear physical or
mental abuse if her ‘secret‘ becomes public.
Emphasise that confidentiality is about a lot more than just HIV. It applies equally
to information about any disease, and it applies to information we have about our
colleagues as well as our patients.

How is the team involved? (10 minutes)

We have seen that in palliative care we do not work in isolation, but in a team.
So where is the team involved in confidentiality?
Put up the following on a flip chart, overhead projector or slide and work through
each point.

Confidentiality in the team

l Who do we share information with?
l Where do we write information?
l Who has access to this information?
l Will the patient benefit if we share the information?
l Has the patient given permission to share their information?

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 Case studies
Resource 15 – Case studies on confidentiality.
Confidentiality is not always simple.
The following cases have no absolute answers but have some points that will
stimulate discussion.
GROUP WORK (40 minutes)
Aim: to increase understanding of the issues around confidentiality.
Use Resource 15
Work through this case together as a whole group (10 minutes)
Salim is a 14-year-old patient who has HIV. He is an orphan and his guardians
have asked several times that you do not mention HIV in front of him as they do
not want him to know his HIV status. He is on ARVs. One day he appears on his
own and asks why he has to take medicine. How will you respond?
He eventually finds out his status and becomes very depressed and anorexic. He
is refusing to take his medication. How do you deal with this?
Salim is in standard 7 at the local primary school and the head of the school is
a good friend of yours. He is at your house one evening and starts to talk about
Salim. He is very fond of the boy and shows great concern and asks you what is
his problem and how can he help? What will you say?
Divide the participants into groups and give each one a different scenario from
Resource 15.
They have 30 minutes to discuss their case and note down their comments. If they
want, they can look at the other questions after they have finished their own.
Presentation of Group Work (20 minutes)
Each team lets a representative report on their case. The other participants
should have a chance to add their comments. There is five minutes for each team
to present.
You can see from these cases that confidentiality is not a case of right and wrong and
is sometimes a matter of conscience.

Summing up (five minutes)

Run over the main points of the session.

Ask everyone to think of the most important thing they have learned and what
one thing they want to do differently as a result. They should add this to their list of
personal learning points (see Module 1).

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 ADDITIONAL SESSIONS
INTRODUCTORy SESSION
This session is for use at the start of a course – you may not need to use it for a one-day
programme, or you could use a shortened version.
Introductions
Go around the room and ask each person to introduce themselves – names, where they
work etc.
Ice-breakers
you could use some ‘ice-breakers’ (see page 11) to get people talking and interacting
with each other.
Expectations
?
ASK PARTICIPANTS TO CALL OUT THEIR ExPECTATIONS OF THE COURSE – WHy
THEy HAVE COME, WHAT THEy ARE HOPING TO LEARN ETC.

Write these up on the flipchart.

Ground rules
?
ASK PARTICIPANTS TO SUGGEST GROUND RULES FOR THE COURSE AND WRITE
THEM UP. THESE SHOULD INCLUDE:
l confidentiality
l mutual respect (eg listening when others are talking, not interrupting)
l share responsibility for learning (eg helping fellow participants, taking part in
group work, allowing others to speak)
l always ask if you don’t understand
l turn off mobile phones.

Leaders within the group

It may be helpful for the participants to nominate/elect leaders who can represent the
participants during the course, eg chairman, secretary, time-keeper.
Housekeeping
Explain the arrangements for meals and refreshments, toilets and other administrative
details. If you plan to take a register every day, explain how this will be done.

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 Introducing the Toolkit
The course uses the Toolkit throughout. It is hoped that participants will become
familiar with it so that they will continue to use it after the course to find information and
resources to help them in their work.
Explain briefly what the Toolkit is (see Introduction page IV of the Toolkit)
Get everyone to look through it together so they can begin to find their way around
its sections.
Look at the tools contained in the Toolkit.
Encourage the participants to use it during the course, looking things up during the
sessions. They will find almost all of what is being taught in the Toolkit, so they should not
need to take many notes.
Teaching methods on the course
Explain that the course will use a variety of teaching methods, some of which they may
not be familiar with. Most of the course uses participatory methods rather than lectures.
These methods help people to remember what they have learned, and enable them to
learn from one another.
Confidence rating
Have a copy of the confidence rating scale (Tool 15 in the Toolkit) for each participant –
give them five minutes to fill it in. This shows how confident they feel about palliative care
skills. They will be asked to rate their confidence at the end of the course, which will give
an indication of how effective the teaching has been.

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 FINAL SESSION – IMPLEMENTATION
AIM OF SESSION
To encourage participants to implement what they have learned on the course.

LEARNING OBJECTIVES
By the end of the session, participants should be able to:
l describe how they intend to use the knowledge they have gained on the course
l describe sources of support and further information.

Time
Topic Teaching methods (minutes)
The local story of palliative care Presentation 10
The Toolkit tree Whole group discussion 10
Developing palliative care in
your setting Group work 25
Feedback 25
Further support Looking at the Toolkit 10
Summing up Reflection 10

How you teach this final session will depend on who your participants are and what the
local situation is. The main aim of the session is to encourage them to start practising
palliative care, or to improve what they are already doing, using the knowledge and
enthusiasm they have gained on the course.

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 The story of palliative care in this region (10 minutes)
Tell the story of the development of palliative care in this country. If it has already begun
in this locality, ask participants who are involved to describe how it started and what is
happening now.

The course participants are the next chapter of the story.

For some, implementing what they have learned may involve forming a team and setting
up a service. Others may not be in a position to do this, but should be encouraged that
they can all use their new palliative care skills as they care for patients in their work. Even
if they have no palliative care drugs, improving their communication skills can make a
difference to the care they give.
They may be able to find someone – possibly another participant on the course – who
they could meet for encouragement and support.

The Toolkit tree

WHOLE GROUP DISCUSSION ON THE TOOLKIT TREE (10 minutes)
l Have a tree already drawn on a flip chart and let the group call out the four roots.
l Then let them call out the local resources available to make up each root. These
were discussed in groups in Module 2 – you could look at the flipchart feedback
sheets from that session if you have kept them. They may have more ideas now that
they have done the rest of the course.
l Look at the fruits on the tree. These are the different ways in which palliative care
can be delivered. There are five fruits on page 6 but they may think of others.
l If there is some palliative care already happening discuss what kind of ‘fruit’ this is.
What other kinds of ‘fruit’ might grow well in this area?

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 Developing palliative care in your own setting
GROUP WORK ON DEVELOPING PALLIATIVE CARE IN YOUR AREA OF WORK (25 minutes)
Aim: to discuss implementation of palliative care.
Participants working in the same place should be in the same groups – these will be
similar to the groups in Module 2.
The questions you set will depend on local circumstances. Here are some suggestions:
l Who is, or could be, on your team? (Be specific, giving names)
l Who else would you like to include?
l When and where will you meet together?
l What ‘fruit’ are you hoping to grow, ie how do you plan to deliver palliative care?
(eg as a hospital team, or within a HBC programme etc)
l What challenges will you face and how will you overcome them?
l What resources are missing and how will you get them? (eg morphine or other drugs)
l What further training will you need?
l What training will you need to give? (eg to volunteers)
l Who could give you further help and support?
FEEDBACK (25 minutes) – each group presents their ideas/plans; others add their
comments and suggestions.

Further support (10 minutes)

l Identify sources of support they can use as they start to practise palliative care – both
individuals (eg the course facilitators) and organisations (eg national association).
l Look briefly together at the tools in the Toolkit, to make sure they know what practical
resources are available for use in their work. The ones they want to use can be
photocopied or downloaded.
l Look at the list of further resources in Tool 18.
Summing up (10 minutes)
Bring together the ideas which have been generated. Encourage the participants that
they can do palliative care in their setting.

Ask everyone to think of the three most important things they have learned on the
course and what they plan to do differently as a result. How will they do this? They
should write their plans on their list of personal learning points (see Module 1).
Encourage them to look at these plans in two months’ time and see how they are
getting on.

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 ASSESSMENTS FOR THE END OF
THE COURSE

There are three assessment tools to use at the end of a course. These are useful for the
trainers as well as the participants.

Course evaluation (Resource 13)

Resource 13 is an evaluation form for the course. Make time for participants to fill this in
on the last day, eg before the test or before certificates are presented. Ask them to be
honest and give them 10 minutes to do it.
The feedback will be helpful for you in your development as a trainer and will also be
useful for us at Help the Hospices. Please let us know how the course went and what the
participants thought of it by emailing [email protected]

End of course test (Resource 14)

Resource 14 is a test that can be used at the end of a course to show participants how
much they have learned and to bring out areas where clarification is needed. It should
not take more than 30 minutes to complete. Afterwards, go through all the answers
together – this can be a useful way of clearing up misunderstandings and clarifying
important points.
If you have not used all the modules, you will need to take out the questions relating to
those modules.

Confidence rating scale (Tool 15 in the Toolkit)

Repeat the confidence rating scale that participants did at the start of the course.
Comparing the results will give you an idea of how effective the course has been.

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 RESOURCE 1 ROLE PLAY SCENARIOS FOR
COMMUNICATION SKILLS (Module 3)
The following scenarios are all patients attending a small clinic where they are met by a
health professional who does not know them. One person is to play the patient and the
other the health professional. There is no need to examine your ‘patient’. The exercise
is about practising communication skills, not necessarily arriving at a diagnosis. The
patient can expand on the story below in any direction they want.
1) An elderly man lost his wife a few months ago. He lives in a village but his children
all live in the city and have returned there to their families. The man wants to stay in
his familiar surroundings but feels isolated without any family around him. He has
painful joints and is short of breath. The painful joints stop him working on the land
and he is worried about how he can get his field planted for the next harvest.
2) A young woman discovered an ulcer in a very private place. She has been told by her
sister that it may be a sexually transmitted disease and is worried her husband may
have been unfaithful. She has never slept with anyone else but she is afraid to tell
him about the ulcer in case he accuses her of unfaithfulness. He is a lorry driver and
brings home a very good salary which pays school fees for their two children.
3) A woman of 40 has breast cancer which has spread to her ribs and back. She has
been given medicine from the hospital which is controlling her pain, but she has
come to you because she is very worried about the future of her three children.
She knows there is no treatment for her cancer and realises that her life is short.
Her husband is a drunkard and she fears he will not look after the children well
when she dies.
4) A young single man who is a school teacher has an itchy rash all over his body. He
is living away from home and has a girlfriend. They are planning to get married as
soon as he can afford it. He is very worried about the rash as he has a friend who is
HIV positive that had a similar rash. He has never had an HIV test and does not want
to have one.
5) A father of a 14-year-old girl who is dying of cancer. He is a successful business man
and has plenty of money to pay for treatment but he has been told that nothing can
be done. He is very angry with the doctors who have been caring for his daughter
because he feels they have failed her.

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 RESOURCE 2 SCENARIOS FOR BREAKING BADS
NEWS (Module 4)
Patient
1) You are Mariam, a young woman of 30 years, married but with no children. You
have had some pelvic pain and have been bleeding a lot. You have come for the
result of a biopsy of your cervix.
2) You are Peter and have come for the result of your HIV test. You have been advised
to have one because you have been diagnosed as having TB. You have been faithful
to your wife who you married five years ago and are sure your result will be negative.
3) You have brought your 18-month-old child Juma with you for the result of his
HIV test. You did not really want the test to be done but he has been very ill with a
recurrent cough and has had difficulty breathing. He is well today after his medicine
from the hospital.
Health professional
1) You are the doctor who saw Mariam and took the biopsy. She has invasive cancer
of the cervix and you will have to arrange for her to have a hysterectomy as soon
as possible.
2) You saw Peter at the TB clinic last week and you now have his positive HIV result in
front of you to give him.
3) You are the ward doctor who saw Juma. He has been admitted four times so far
this year with pneumonia and the last occasion you treated him with high dose
co-trimoxazole and he responded well. You had great difficulty persuading the
mother to let you do an HIV test. You must now give her the positive result.

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 RESOURCE 3 SCENARIOS FOR
HOLISTIC HISTORIES (Module 7)
Case 1
You visit a 24-year-old woman with advanced cancer of the cervix. You have been
treating her with morphine for abdominal pain. Now she is lying silently in the house.
There is a very bad smell in the room, which is untidy and the floor has not been swept.
Her 12-year-old niece is with her.
What questions do you need to ask her?
What questions do you need to ask her niece?
What do you think would be on your problem list?
Which three are most important?

Case 2
A 23-year-old school teacher comes to your clinic complaining of pain in his feet. You
have not met him before. He is also finding it painful to swallow and is losing weight. He
says he does not sleep properly and is finding it difficult to go to work.
What questions do you need to ask him?
What do you think would be on your problem list?
Which three are most important?

Case 3
You are asked to see a 60-year-old woman on a general medical ward who has a cancer
of her breast. The swelling is discharging pus. She is very weak and her husband tells you
that she is not eating the hospital food. She complains of pain in her back and has a large
wound on her sacrum.
What questions do you need to ask her?
What questions do you need to ask her husband?
What do you think would be on your problem list?
Which three are most important?

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 Case 4
You are asked to visit a 45-year-old man with a spinal tumour who has become paralysed
during the past few weeks. He has severe pain in his back and right leg. He has tried
various medicines for this. He owns a small shop which his wife is currently running. They
have four children, three are at secondary school. You see him at home, with his wife who
is very tearful.
What questions do you need to ask him?
What questions do you need to ask his wife?
What do you think would be on your problem list?
Which three are most important?

Case 5
You are asked to visit a 12-year-old boy who has an osteosarcoma. His parents and
an aunt come into his room with you but it is the father who takes the lead in the
conversation. The aunt strokes the boy’s hair but the mother neither touches nor speaks
to him. The boy’s two brothers stand at the door of the house but do not come in.
What questions do you need to ask the boy?
What questions do you need to ask his brothers?
What questions do you need to ask his parents and aunt?
What do you think would be on your problem list?
Which three are most important?

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 RESOURCE 4 BENEFIT AND BURDEN
(Module 8)
1) Mwanaidi is a 58-year-old woman with HIV. She has not started antiretroviral
drugs (ARVs) yet as her state of health has been so poor and she has not attended
regularly for her adherence counselling sessions. She develops severe pneumonia
and is vomiting.
What are the benefits and burdens of being admitted to hospital for
intravenous antibiotics?
2) James, four, has a huge swelling of his left face and eye. He lives in the village. He is
diagnosed as having Burkitt’s lymphoma. The hospital advises that he should go to
the referral hospital for chemotherapy but it is a very long way and his mother has
five other children and no husband.
What are the benefits and burdens of chemotherapy?
3) Happy, four, has AIDS and a severe wasting disease. There are no ARVs available in
this area. She has three siblings and her mother’s job is the only source of income
for the family.
What are the benefits and burdens of admission to a nutritional
rehabilitation unit?
4) Jane is 76 and lives with her son, daughter-in-law and their four children. She has
a huge ulcerating breast cancer. It is very smelly and she already has disease in the
lymph nodes under her arm.
What are the benefits and burdens of a mastectomy?
5) Mohammed lives in a remote village and the bus fare to the hospital and back is the
equivalent of several days’ wages. He has been on the ward for a long time having
treatment for TB and Cryptococcal meningitis. He is now well and is going home.
What are the benefits and burdens of starting ARVs?
6) Christopher has cancer of the bowel and is very thin and wasted. He no longer
enjoys food.
What are the benefits and burdens of admitting him to hospital for nasogastric
(NG) tube feeding?
7) Rama has lung cancer and gets recurrent pleural effusions. His breathing is better
for a short time after his chest is drained. He lives 30km from the hospital.
What are the benefits and burdens of continuing to drain the pleural effusion?

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 RESOURCE 5 PRESCRIPTIONS TO USE WITH
TOOL 6 OF THE TOOLKIT (Module 8)
1) Fill in a drug chart for:
l Paracetamol (two tablets) four times a day
l Ibuprofen 200mg (one tablet) three times a day
Now explain this to your partner.

2) Fill in a drug chart for:

l Amitriptyline 25mg (one tablet) at night
l Metoclopramide 10mg (one tablet) three times a day before meals
Now explain this to your partner.

3) Fill in a drug chart for:

l Loperamide 2mg (one tablet) three times a day and after each loose stool up to
16mg (eight tablets ) in a day
Now explain this to your partner.

4) Fill in a drug chart for:

l Metronidazole 400mg (two 200mg tablets ) three times a day for five days
l Fluconazole 150mg (one tablet) daily for two weeks
Now explain this to your partner.

5) Write a prescription for:

l Haloperidol 5mg (one tablet) at night
l Acyclovir 200mg (one tablet) five time a day for five days
Now explain this to your partner.

6) Write a prescription for:

l Chlorpheniramine 4mg (one tablet) three times a day
l Prednisolone 30mg (six tablets) daily for five days
Now explain this to your partner.

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 RESOURCE 6 QUIZ ON THE
ANALGESIC LADDER
1) How many steps are there on the analgesic ladder?
a) Two steps b) Four steps c) Three steps

2) On which step can you use paracetamol?

a) Step one only b) Steps one and two c) Every step

3) Is it possible to use NSAIDs like Ibuprofen together with morphine?

a) Yes b) No

4) Is it possible to use paracetamol together with an adjuvant drug?

a) Yes b) No

5) A patient with HIV has burning pain and numbness in his feet. Is this due to:
a) infection in the skin? b) neuropathic pain? c) muscle spasm?

6) The patient in question five should be treated with:

a) paracetamol b) amitriptyline c) flucloxacillin

7) Hyoscine butylbromide should be used:

a) on step three of the b) for abdominal colic c) for neuropathic pain
ladder only

8) A patient with a brain tumour and raised intra cranial pressure should:
a) start on step three of b) be given parenteral c) be started on steroids
the ladder analgesic (injection)

9) What dose of dexamethazone should be used for the patient in question eight?
a) 2mg three times a day b) 16mg daily c) one tablet

10. If the patient in question eight takes steroids for a long time, he may develop:
a) agitation b) constipation c) low blood sugar

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 11) Carbamazepine is used to control convulsions but may also be used for:
a) constipation b) confusion c) neuropathic pain

12) The dose of carbamazepine should start at:

a) 10mg daily b) 400mg tds c) 100mg bd

13) Neuropathic pain is produced by:

a) tissue damage b) severe infection c) nerve damage

14) Neuropathic pain may be treated with:

a) acyclovir c) valproate d) phenyl barbitone

15) Step two of the analgesic pain ladder adds weak opioids. Which of the following are
weak opioids?
a) Aspirin b) Codeine c) Morphine

16) The most common side-effect seen with all opioids is:
a) confusion b) constipation c) diarrhoea

17) Morphine should never be prescribed with:

a) ibuprofen b) codeine c) amitriptyline

18) The pain from Herpes Zoster may be helped by:

a) amoxicillin b) amitriptyline 25mg nocte c) amitriptyline
150mg tds

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 RESOURCE 7 MORPHINE CALCULATIONS
(Module 10)
1) A patient is taking 10mg of morphine every four hours and his pain is not well
controlled.
a) What would you increase the dose to?
2) A patient has just started on 2.5mg of morphine every four hours. His pain is
improved a little but could still be improved more.
a) What would you increase his daily dose to?
b) What would you give him last thing at night?
3) A patient has been taking 30mg of morphine every four hours and still has pain
about an hour after each dose.
a) What would you increase the dose to?
4) A patient at home who is taking 10mg of morphine every four hours says he still has
occasional quite severe pain but not every day.
a) What would you advise him to do?
b) What would the breakthrough dose be?
5) A patient is taking 60mg of morphine every four hours. He gets pain when he
needs to move, but otherwise he is free from pain. His morphine solution is
5mg/5ml strength.
a) Would you use a breakthrough dose? If so, when?
b) He is taking a large volume of liquid (60ml) every four hours. How could this be
made easier?
6) A patient is taking 20mg of morphine every four hours and took one breakthrough
dose in the middle of the night. He says the pain is still at level six most of the time.
a) Would you increase the dose?
b) What is the new dose?
c) What is the new breakthrough dose?
7) A patient taking 10mg of morphine every four hours becomes unable to swallow.
a) What could you do for him?
8) A patient with bone metastases comes home after radiotherapy. He is on 30mg of
morphine every four hours and starts to get confused and hallucinate.
a) What could be the problem?
b) How would you deal with it?
9) A patient aged six is on morphine 2.5mg every four hours and is still in pain.
a) Can you increase the dose and if so what to?

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 10) A patient on a regular dose of 20mg of morphine every four hours vomits after his
night-time dose.
a) What should you do?
11) A patient on 15mg of morphine every four hours has had six breakthrough doses in
24-hours.
a) What is the total daily dose?
b) How would you change the regular dose?
c) What is the new breakthrough dose?
12) A patient is on 45mg of morphine every four hours. He needs a very occasional
breakthrough dose.
a) What breakthrough dose would you use?
b) What strength of morphine solution would you use and why?
c) If the pain got worse, what would the increased dose be?
13) A patient on 100mg of morphine every four hours is still complaining of pain.
a) Can the dose be increased further or have you reached the maximum dose?
b) If it can be increased, what would you increase it to?
The following calculations are for use if MST tablets are available.
14) A patient has been taking 5mg of morphine liquid (NR) every four hours and her
pain is well controlled.
a) What dose of MST should she use?
15. A patient who has had 60mg of MST twice daily for a week now complains his pain
is getting worse.
a) What would you increase the dose to?
b) What would you give as a breakthrough dose (dose and preparation)?
16. A patient has been taking 45mg of NR liquid morphine every four hours. MST now
becomes available.
a) What is her total daily dose?
b) What would her dose of MST be?
c) What would her breakthrough dose be?

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 RESOURCE 7A ANSWERS TO MORPHINE
CALCULATIONS (Module 10)
1a) Answer: 15mg

2a) Answer: 5mg (anything from 3.75–5mg is okay)

2b) Answer: 10mg (or twice the four-hourly dose)

3a) Answer: 45mg

4a) Answer: Stay on the same dose but use a breakthrough dose when he needs it.
4b) Answer: 10mg

5a) Answer: Yes. Use a breakthrough dose half an hour before moving.
5b) Answer: Use 50mg/5ml solution. The patient will need only 6ml of this
strength solution.

6a) Answer: Yes

6b) Answer: 30mg every four hours
6c) Answer: 30 mg

7a) Answer: Use 50mg/5ml solution. He then only needs 1ml which could be absorbed
through the buccal mucosa.

8a) Answer: His pain is reduced and he is showing signs of morphine overdose.
8b) Answer: Stop the morphine for one dose and restart at half the dose. It may need to
be cut even more than this.

9a) Answer: Yes. With children morphine is increased exactly as with adults so the new
dose would be 5mg.

10a) Answer: Give him an antiemetic and give him the dose again.

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 11a) Answer: 180mg
11b) Answer: Double it to 30mg (This is the total dose for 24 hours divided into six doses.)
11c) Answer: 30mg

12a) Answer: 45mg

12b) Answer: 50mg/5ml to reduce the volume of liquid for the patient.
12c) Answer: 67.5mg. This is a rather strange amount and in practice you would
probably give 65mg.

13a) Answer: Yes it can be increased. There is no maximum dose.

13b) Answer: 150mg

14a) Answer: MST 15mg bd (every 12 hours)

15a) Answer: MST 90mg bd

15b) Answer: 30mg of NR morphine (liquid morphine)

16a) Answer: 270mg

16b) Answer: 135mg bd (In practice this would be impossible and they would have to
take 1x100mg + 1x30mg.)
16c) Answer: 45mg NR morphine

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 RESOURCE 8 SCENARIOS FOR SYMPTOM
CONTROL 1 (Module 11)
1) You are a nurse visiting a man at home with renal failure. He is very swollen all over
and very breathless. His wife died a year ago and now his 18-year-old daughter is
caring for him.
What can you do for his breathlessness? (page 44 of the Toolkit)
2) You are the doctor looking after a woman with widespread cancer. She is very
nauseated and vomits intermittently.
What can you do to help her nausea and vomiting? (page 41 of the Toolkit)
3) You are a doctor in paediatric outpatients and a thin child is brought to you with
a large tumour in his leg which is extremely tender. He has been seen at several
private clinics and been given some treatments which have not helped. He is
screaming in pain and very frightened.
What can you do for his pain? (page 27 of the Toolkit)
4) You are a clinical officer working in a general medical ward of a district hospital. You
are asked to see a woman with AIDS who has been brought by her elderly mother
because she is saying strange things, is wandering from the house at night and
burnt herself yesterday because she knocked a pot of boiling water over. Now she is
distressed and shouting.
What can you do to help her confusion? (page 36 of the Toolkit)
5) You are a home-based care (HBC) volunteer who is visiting a woman with breast
cancer at home. You have a HBC kit with you. She has had pain in her back and has
been given morphine. That pain has improved but now she has abdominal pain and
has not had her bowels open for a week.
What can you do to help her constipation? (page 46 of the Toolkit)
6) You are the clinician seeing a recently diagnosed patient in your HIV clinic. His
main complaint is irritation of the whole body and his skin is scratched and infected
in places.
What can you do to help his itchy skin? (page 33 of the Toolkit)
7) You are a palliative care nurse visiting a 65-year-old widow with a large cancer of
the vulva which is discharging pus. She lives with her son, daughter-in-law and
grandchildren and is distressed about the smell in the house.
What can you do to help her smelly wound? (page 34 of the Toolkit)
8) You are a relative of an elderly lady with cervical cancer and a vesico-vaginal fistula.
She has a smelly vaginal discharge and is incontinent of urine.
What can you do to help her incontinence and discharge? (page 47 of the Toolkit)

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 9) You are the clinical officer on the paediatric ward. A young HIV positive child is
brought in having a convulsion. His mother thinks he is dying and is hysterical.
What can you do to help his seizure (convulsion)? (page 35 of the Toolkit)
10) You are the pastor visiting a man with multiple lymphomas. He has been unable to
sleep for several weeks and is very anxious.
What can you do to help his insomnia and anxiety? (page 37 of the Toolkit)
11) You are a counsellor. Today a client has returned who you saw a month ago when
you gave him his positive HIV result. He walks in slowly, looks unwashed and scruffy,
and says he needs to talk to you urgently.
What can you do to help his depression? (page 38 of the Toolkit)
12) You are the palliative care doctor looking after a patient with cancer of the breast
who has very short life expectancy. Her sister visits you and says the patient has no
appetite, is losing weight and will not eat.
What can you do to help her poor appetite and weight loss? (page 39 of
the Toolkit)
13) You are the clinical officer in a HBC programme. You are asked to visit a patient
who is complaining she cannot swallow even water as her mouth and throat are so
painful. She has severe candida.
What can you do to help her difficulty swallowing? (page 40 of the Toolkit )
14) You are the ward nurse looking after a patient who has liver cancer and ascities
(fluid in the abdomen). He has intermittent hiccups and complains of burning in
his chest. He is very anxious to get home as he says the hospital is not making
him better.
What can you do to help his hiccups and indigestion? (page 42 of the Toolkit )
15) You are a doctor seeing an elderly man with lung cancer. He can’t sleep at night
because he is coughing so much.
What can you do to help his cough? (page 43 of the Toolkit)
16) You are the ward auxiliary nurse. The old man in the corner of the ward with no
relatives has developed profuse diarrhoea.
What can you do to help his diarrhoea? (page 45 of the Toolkit)
17) You are the carer for your elderly father. He had recurrent schistosomiasis (a
parasitic disease of the urinary tract) as a boy. Recently he has had pain and
difficulty passing urine and has passed some blood. He says he does not want to
waste money going to the health centre. Today he is in agony and has not passed
water since he got up.
What can you do to help with his retention of urine? (page 48 of the Toolkit)

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 RESOURCE 9 SCENARIOS FOR END
OF LIFE CARE
1) A 78-year-old widow has metastatic breast cancer and no further treatment is
available. She is increasingly confused and now bed bound. She is very thin and
taking only sips of water. She has been in hospital for a week and is on an IV drip
because she is not drinking. Her daughter wants to take her home and care for her
there. Her son is adamant that she should stay in hospital and be given NG feeding
“to fight the cancer”.
What would you do and why?
How would you counsel the family?

2) Sunil is a 45-year-old man who has advanced stomach cancer. He had surgery a
few months ago but the tumour has come back and he has had some episodes
of gastric bleeding. He has had repeated blood transfusions, which involved long
journeys to hospital, but he remains very anaemic and his overall condition is frail.
You are called to see him at home because he has vomited a large amount of blood.
He is semi-conscious. His brother is with him and anxious he goes to the hospital for
another transfusion and says: “You can’t just let him die.”
What would you do and why?
How would you counsel the brother?

3) A 47-year-old woman has Kaposi’s sarcoma. She has had a course of chemotherapy
in the past which helped for a time but the tumour has spread and she has
deteriorated. She does not want further treatment as she does not want to use up
all the money which has been set aside for her grandchildren’s school fees, and she
knows the effect of the treatment will not last. The family ask you to persuade her
to accept further treatment. They say that she is depressed, and that she has just
“given up”.
What would you do and why?
How would you counsel the family?

4) A 10-year-old boy is dying of renal failure. His whole body is swollen and he is very
breathless and frightened. He is being given oxygen but keeps pulling the mask off.
Regular oral morphine has been prescribed to alleviate the breathlessness and it
seems to be helping, but when you come to give the next dose, his grandmother
refuses, saying that the morphine will kill him. She is a retired nurse.
What would you do and why?
How would you counsel the grandmother?

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 RESOURCE 10 DIFFICULT QUESTIONS
(Module 13)
For each question, discuss how you might answer using a question, and how the
conversation might proceed after that. Then, briefly role play the scenario to practise
using the questions.

1) An eight-year-old girl whose mother is dying of cancer and is now semi-conscious

asks: “When will my mother start to get better?”

2) A 13-year-old boy has started taking antiretroviral drugs (ARVs). He asks: “What is
this medicine I have to take? My mother won’t tell me.”

3) A 10-year-old boy has advanced cancer for which there is no treatment. He asks:
“What is going to happen to me?”

4) A 14-year-old girl is dying of leukaemia. She asks: “Why has this happened to me?”

5) A nine-year-old boy has lost both his parents over the past two years. He now has
advanced HIV disease and cannot access antiretroviral therapy (ART). He asks: “Am I
going to die?”

6) A seven-year-old boy has end-stage heart failure. He is deteriorating despite

medication. He asks: “Can I try some different medicine? This one is not working.”

7) A five-year-old girl has two older siblings, both of whom are seriously ill. She asks:
“Why do you get ill once you go to school?”

8) An 11-year-old whose father is very ill asks: “Why does everyone stop talking when
I come into the room?”

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 RESOURCE 11 SCENARIOS FOR
COMMUNICATING WITH CHILDREN (Module 13)
1) You visit a 12-year-old girl at home who has widespread Kaposi’s sarcoma (KS)
and is bed bound and breathless. She is on TB treatment but it is not helping and
you suspect she has KS in her lungs. Her mother died of TB six months ago and her
grandmother is now looking after her. The girl is very frightened and asks: “What will
happen to me? Am I going to die like my mother?”
Role play the child, grandmother and health worker.

2) The mother of a 10-year-old boy comes to see you. He is HIV positive but has not
been told. He has been losing weight and his mother wants him to be assessed
for antiretroviral treatment (ART) but is adamant that he must not be told his HIV
status. His father died of HIV disease three months ago and she thinks that he will
“give up hope” if he knows he is HIV positive as well.
Role play a conversation with the mother about disclosing the boy’s status –
exploring her fears, discussing the possible advantages of disclosure and how
it might be done. Then bring the child into the role play (he has been waiting
outside) and continue.

3) You are visiting a 40-year-old woman at home with breast cancer which has
spread into her bones. She is bed bound and on morphine for pain. Her 12 year
old daughter is caring for her and for two younger siblings. When you leave the
house, the daughter follows you outside and asks: “What is going to happen to my
mother? I don’t know how I can manage to look after my brothers if she doesn’t get
better soon.”
Role play the girl and the health worker.

4) You are asked to see a 10-year-old girl who is having treatment for leukaemia but is
refusing any further medication because she is scared of needles. When she was in
hospital, another child on the ward died. She screams when her parents try to take
her to hospital.
Role play a conversation with the child and parents.

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 RESOURCE 12 SCENARIOS FOR SYMPTOM
CONTROL 2 (Module 14)
1) You are a home-based care (HBC) volunteer visiting an eight-year-old child who
has cerebral palsy. She is lying on a mat with an arched back and her legs and arms
are very stiff. The skin on one of her hips is red.
What can you do to help her spasticity? (pages 49 and 58 of the Toolkit)
How can you protect her skin from pressure sores? (page 34 of the Toolkit)

2) You are a doctor in a health centre. You see a six-year-old boy who weighs 12kg. He
has AIDS but there are no antiretroviral drugs (ARVs) in your area. The boy has been
having loose stools five to six times a day for the past month. He is not dehydrated
and is eating okay. You have seen him twice before and treated him with co-
trimoxazole, metronidazole and albendazole but he is no better.
What can you do to help his chronic diarrhoea? (page 45 of the Toolkit)

3) You are a nurse visiting an old lady at home who is dying from cancer. The hospital
says there is nothing it can do to help. She is semi-conscious and unable to eat
or drink.
What can you do to care for this lady? (page 51 of the Toolkit)

4) You are a doctor looking after a man with stomach cancer who vomits every time he
eats and feels nauseated and bloated.
What is the most likely cause of his nausea and vomiting? (page 41 of the Toolkit)
What can you do to help?

5) You are a clinical officer in a district hospital. A young man is being treated with
fluconazole for cryptococcal meningitis. He has a severe headache.
What more can you do to help his headache? (pages 27-30 of the Toolkit)

6) You are a nurse seeing a boy with Burkitt’s lymphoma. He has had several
courses of treatment and the hospital says there is nothing more it can do. He has
a large tumour inside his mouth which smells bad and is making it difficult for him
to swallow.
What can you do to help the smelly tumour? (page 40 of the Toolkit)

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 7) You are a doctor doing home visits for patients referred by the HBC nurse. You
see a 55-year-old woman who has cervical cancer. During the past week she has
been vomiting large amounts, and she has colicky abdominal pain and increasing
swelling of her abdomen.
What is the most likely cause of her vomiting? (page 41 of the Toolkit)
What can you do to help?

8) You are a HBC volunteer visiting a two-year-old girl with HIV disease. Her ears
have been discharging pus on and off for two months. She has had two courses of
antibiotics; now her mother asks you for some more.
What can you do to help the discharge? (page 56 of the Toolkit)

9) You are a doctor seeing an elderly man with prostate cancer. Today he cannot walk.
You find him paralysed in a wet bed.
What is the likely cause of his mobility problem and incontinence? (page 49 of
the Toolkit)
What can you do to help?

10) You are a nurse in a rural clinic. You see a five-year-old boy with severe HIV disease.
He has widespread scabies and is distressed and scratching constantly. He is not
able to sleep at night.
What can you do to help? (page 33 of the Toolkit)

11) You are a doctor on a general paediatric ward. You see a two-year-old child with
a bulging right eye which you think is a cancer. He is screaming and agitated. His
mother says he does not sleep and will not eat, but he is still breast feeding.
What can you do to help his pain? (page 27 of the Toolkit)

12) You are a nurse visiting a woman with breast cancer. Her tumour is discharging pus
onto her skin and there is a bad smell.
What can you do to help? (page 34 of the Toolkit)

13) You are a volunteer visiting a man who has had radiotherapy for cancer of the
tongue. He is distressed by a painful, dry mouth.
What can you do to help? (page 40 of the Toolkit)

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 RESOURCE 13 COURSE EVALUATION
Overall assessment of the course (circle as appropriate)
Excellent Very good Good Not so good Poor

Which session did you enjoy most?

Which session will be most useful in your daily work?

Which session was least helpful?

Is there any subject that you wanted more teaching on? Which?

Which teaching method did you find most helpful?

Which teaching method did you find least helpful?

Any other comments

Thank you for your help

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 RESOURCE 14 END OF COURSE ASSESSMENT
IN PALLIATIVE CARE
Each question contains five statements about a topic. For each statement mark ‘Y’ if you
agree and ‘N’ if you disagree.
1) Palliative care
a) Is only about pain and symptom control Y / N
b) Can be used alongside ARV treatment Y / N
c) Should always be done at home Y / N
d) Should begin when the patient is very sick Y / N
e) Is only needed in cancer and HIV disease Y / N

2) The holistic approach

a) Involves the patient’s disease only Y / N
b) Involves the patient and the family Y / N
c) Uses all the team when necessary Y / N
d) Can be used in the ARV clinic Y / N
e) Is only used in the terminal stage of illness Y / N

3) The analgesic ladder

a) Has four steps Y / N
b) Step one drugs can be given together with morphine Y / N
c) Should only be used with cancer patients Y / N
d) A three-year-old child should be given 400mg ibuprofen tds Y / N
e) Includes the use of adjuvant analgesic drugs Y / N

4) Oral morphine
a) Must be taken for life once it has been started Y / N
b) Should only be given when the patient has a few days to live Y / N
c) Can be given when the patient is at work Y / N
d) Can cause severe constipation Y / N
e) Has a high risk of addiction Y / N

5) Chronic pain
a) Should be reassessed regularly Y / N
b) May be managed with paracetamol alone Y / N
c) Is best managed with PRN medication Y / N
d) May be worsened by anxiety Y / N
e) Is usually treated by injection Y / N

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 6) Neuropathic pain
a) May present as burning pain Y / N
b) Is common in AIDS Y / N
c) Can be treated with acyclovir Y / N
d) Can be assessed with a pain score Y / N
e) Is always mild Y / N

7) Emotional pain
a) Only affects the patient Y / N
b) Can be treated Y / N
c) Should always be treated by a counsellor or spiritual advisor Y / N
d) Is often relieved by helping people talk about their concerns Y / N
e) May increase physical pain Y / N

8) End of life care

a) The patient’s own wishes should always be respected Y / N
b) Patients should always be fed by NG tube if they cannot swallow Y / N
c) It is okay to tell the patient he/she is dying Y / N
d) We must keep the patient alive as long as possible Y / N
e) Patients should continue all their drugs until the end Y / N

9) Confidentiality
a) Means respecting patients’ privacy Y / N
b) Is only important in HIV disease Y / N
c) Means revealing personal information to others Y / N
d) Patients’ information can be revealed to an employer Y / N
e) Is less important when someone is close to death Y / N

10) Symptom control

a) Cotrimoxazole is useful for bad smelling wounds Y / N
b) AIDS related diarrhoea can be helped by morphine Y / N
c) Raised intra-cranial pressure can be helped by steroids Y / N
d) Nausea can be treated with haloperidol Y / N
e) Morphine should be taken every three hours Y / N

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 11) Symptom control
a) Breathlessness may respond to low dose oral morphine Y / N
b) Hiccups can be helped by metronidazole Y / N
c) A confused patient should be given 150mg haloperidol Y / N
d) Itching can be helped by chlorpheniramine 4mg tds Y / N
e) The starting dose of morphine in a child is 0.1mg/kg 4 hourly Y / N

12) Good communications skills

a) May increase a patient’s anxiety Y / N
b) Can be learned Y / N
c) Involves body language as well as listening skills Y / N
d) Are only used when breaking bad news Y / N
e) Help us to make an assessment of the patient’s condition Y / N

13) Children with terminal illness

a) Often know they are dying before they are told Y / N
b) Can be helped by play Y / N
c) Should always eat three healthy meals a day Y / N
d) May need regular morphine Y / N
e) Should always be cared for in hospital Y / N

14) Spirituality and bereavement

a) It is helpful to understand our patients’ faith Y / N
b) Spiritual problems can affect physical pain Y / N
c) Only a trained counsellor should give spiritual support Y / N
d) Anger can be a part of grief reaction Y / N
e) Palliative care workers can be affected by bereavement Y / N

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 RESOURCE 14a END OF COURSE ASSESSMENT
IN PALLIATIVE CARE answer sheet
1) Palliative care
a) Is only about pain and symptom control N
b) Can be used alongside ARV treatment Y
c) Should always be done at home N
d) Should begin when the patient is very sick N
e) Is only needed in cancer and HIV disease N

2) The holistic approach

a) Involves the patient’s disease only N
b) Involves the patient and the family Y
c) Uses all the team when necessary Y
d) Can be used in the ARV clinic Y
e) Is only used in the terminal stage of illness N

3) The analgesic ladder

a) Has four steps N
b) Step one drugs can be given together with morphine Y
c) Should only be used with cancer patients N
d) A three-year-old child should be given 400mg ibuprofen tds N
e) Includes the use of adjuvant analgesic drugs Y

4) Oral morphine
a) Must be taken for life once it has been started N
b) Should only be given when the patient has a few days to live N
c) Can be given when the patient is at work Y
d) Can cause severe constipation Y
e) Has a high risk of addiction N

5) Chronic pain
a) Should be reassessed regularly Y
b) May be managed with paracetamol alone Y
c) Is best managed with PRN medication N
d) May be worsened by anxiety Y
e) Is usually treated by injection N

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 6) Neuropathic pain
a) May present as burning pain Y
b) Is common in AIDS Y
c) Can be treated with acyclovir N
d) Can be assessed with a pain score Y
e) Is always mild N

7) Emotional pain
a) Only affects the patient N
b) Can be treated Y
c) Should always be treated by a counsellor or spiritual advisor N
d) Is often relieved by helping people talk about their concerns Y
e) May increase physical pain N

8) End of life care

a) The patient’s own wishes should always be respected Y
b) Patients should always be fed by NG tube if they cannot swallow N
c) It is okay to tell the patient he/she is dying Y
d) We must keep the patient alive as long as possible N
e) Patients should continue all their drugs until the end N

9) Confidentiality
a) Means respecting patients’ privacy Y
b) Is only important in HIV disease N
c) Means revealing personal information to others N
d) Patients’ information can be revealed to an employer N
e) Is less important when someone is close to death N

10) Symptom control

a) Cotrimoxazole is useful for bad smelling wounds Y
b) AIDS related diarrhoea can be helped by morphine Y
c) Raised intra-cranial pressure can be helped by steroids Y
d) Nausea can be treated with haloperidol Y
e) Morphine should be taken every three hours N

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 11) Symptom control
a) Breathlessness may respond to low dose oral morphine Y
b) Hiccups can be helped by metronidazole N
c) A confused patient should be given 150mg haloperidol N
d) Itching can be helped by chlorpheniramine 4mg tds Y
e) The starting dose of morphine in a child is 0.1mg/kg four hourly Y

12) Good communications skills

a) May increase a patient’s anxiety N
b) Can be learned Y
c) Involves body language as well as listening skills Y
d) Are only used when breaking bad news N
e) Help us to make an assessment of the patient’s condition Y

13) Children with terminal illness

a) Often know they are dying before they are told Y
b) Can be helped by play Y
c) Should always eat three healthy meals a day N
d) May need regular morphine Y
e) Should always be cared for in hospital N

14) Spirituality and bereavement

a) It is helpful to understand our patients’ faith Y
b) Spiritual problems can affect physical pain Y
c) Only a trained counsellor should give spiritual support N
d) Anger can be a part of grief reaction Y
e) Palliative care workers can be affected by bereavement Y

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 RESOURCE 15 SCENARIOS FOR
CONFIDENTIALITY (Module 16)
1) Amina is a 35-year-old lady with HIV. She has five small children all under 10. She
has a very low CD4 and has now been admitted to the ward with cryptococcal
meningitis. She is very confused and is not really responding to treatment. You
know she has not revealed her HIV status to her husband and has always stressed
that she is unable to do so as she is afraid of his temper. In hospital she is being
cared for by her sister and brothers. One brother is particularly concerned and has
asked to see you; he wants to know if you have tested her for HIV? How would
you respond?
Sadly Amina dies and the next day her husband comes to see you to thank you for
looking after her. He says he knows she has died from meningitis. How would
you respond?
2) You are working in a busy hospital and a close friend of yours is the surgeon. He
comes to you one day saying he is not feeling too well, and he has lost a lot of
weight. You think he may be infected with HIV. What would you do?
It turns out that he is HIV positive and he has a very low CD4. What should be your
advice about work?
He is extremely anxious that no one should know about his status, not even his wife
who is the nurse working with you in your ward. You know they have several small
children. Should you break his confidentiality?
He goes on to antiretroviral drugs (ARVs) and recovers well. A little later your
own wife needs surgery and your friend is the most competent person to do this.
How would you respond?
Should there be rules which stop infected surgeons doing invasive procedures?
3) You are sitting on a minibus going home after work. Behind you there are a group
of hospital nurses talking together. One of them starts to talk about a patient on
the ward who has carcinoma of the cervix. She mentions her by name and continues
to tell her friends how they had learned that this was an AIDS defining illness.
How would you react?
The next day, the patient says her friend was on a minibus yesterday and heard
the nurses talking and saying she was HIV positive. She has actually refused an HIV
test and wants to know if you have tested her without permission? What would
you say?
You go to the nurse in charge to ask if the nurses can have some teaching on
confidentiality. You tell her the minibus story and she demands to know the name
of the nurse. How would you respond?

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 4) Angela has cancer of the breast. You have told her that if she could get to the
referral hospital they would be able to give her treatment. The treatment is
expensive and will not cure her cancer. She says she needs all her money for school
fees for her three children, so she asks you not to tell her husband that there is
treatment available. How would you respond?
Her husband sees you in the hospital corridor and asks what you are planning for
his wife and why she is not getting better. He has no idea what is wrong with her.
How would you respond?
Angela’s condition deteriorates and her children are due home on holiday. She does
not want them to know she is seriously ill. How would you respond?
5) You are counselling a man who has just had a positive HIV test. You ask him if he
will disclose this to his wife and he is adamant that he will not tell her. You know,
however, that she is pregnant and that antiretroviral therapy (ART) for prevention
of mother-to-child transmission is available. You tell him the importance of his
wife being tested so that she can be offered treatment if she is positive. He remains
adamant that he will not disclose his status to anyone. What should you do?

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