Download Palliative Care Training - Liz Holmes Hospices Trust

FACILITATOR’S MANUAL FOR
PALLIATIVE CARE training
Prepared by Liz Homes Hospices
April 2016
TABLE OF CONTENTS
PAGE
BACKGROUND
4
0
KEY DISCUSSION POINT
PURPOSE OF THE MANUAL
MODULE I: WELCOME AND INTRODUCTION
1.1
Welcome and Icebreaker
1.2
Ground rules
1.3
Expectations
MODULE 2: PALLIATIVE CARE
2.1
Meaning of the concept “palliative care’
2.2
When does the illness become palliative
2.3
Goals of palliative care
2.4
Principles of palliative care
2.5
Models of palliative care
2.6
Barriers to palliative care
MODULE 3: THE ROLE PLAYERS IN PALLIATIVE CARE
3.1
Palliative care team
3.2
Places to seek help
3.3
Qualities and skills required for being an effective palliative care
provider
3.4
Major ethical principles in palliative care
3.5
Planning the day
MODULE 4: BASIC COMMUNICATION SKILLS
4.1
Encouraging active participation
4.2
Obstacles to proper active participation
4.3
Knowledge of referral time
4.4
Listening
4.5
Basic empathy
4.6
Probing or questioning
4.7
Summarizing
4.8
Communication in special cases
MODULE 5: WHY PALIATIVE CARE
5.1
Fears terminally ill patients
5.2
The needs of terminally ill patients
5.3
Assessment of aterminally ill patient
MODULE 6: A HOLISTIC APROACH TO PAIN
6.1
Causes of pain
6.2
Approaches to pain control
6.3
Managing different types of pains
6.3.1 Managing physical pain
6.3.2 Managing spiritual pain
6.3.3 Addressing social pain
MODULE 7: DEATH AND DYING
7.1
The role of palliative care giver during different stages of death
7.2
Factors that affect the process of death and dying
7.3
reparation of the family for the approaching death
7.4
Physical care of the patient
7.5
Care during the final days or hours of life
7.6
Care immediately after the last breath
7.7
Responsibilities after death
MODULE 8: CARE OF THE CARER
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8.1
Causes of stress and burnout amongst the palliative care providers
8.1.1 Internal causes
8.1.2 External causes
8.2
Signs and symptoms of stress
8.3
Tips for handling stress and preventing burnout
8.4
Relaxation technique: Taking a mind journey
REFERENCES
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FOREWORD
[VSO]
3
BACKGROUND
Palliative care is an essential component of a comprehensive package of care for people living
with HIV/AIDS and other life-threatening illness because of the variety of symptoms they can
experience. Palliative care is an important means of relieving symptoms that result in undue
suffering and frequent visits to the hospital or clinic. People living with life-threatening diseases
have challenges especially if they are parent and bread winners, because they won’t work during
their illness and they can’t support their children. It becomes a challenge. Palliative care services
are designed to ease situations such as this. Palliative care services will help to enhance
community health services. Especially for patients who are living in their homes, palliative care is
the best service to improve their quality of life. Serious illness can cause physical symptoms, such
as pain, nausea or fatigue. One may have psychological symptoms like depression or anxiety.
The treatments for your disease may cause symptoms or side effects. Palliative care relieves
symptoms without curing them. Where there is no social worker, a home-based caregiver might
help with practical matters and together with the client plan to meet these. Conversations between
clients and palliative care and legal staff should be on an equal basis, where power is shared and
the expertise of the client recognized.
Health workers can provide basic medical and psychological support including necessary drugs
to control pain and other symptoms that occur as a result of HIV related disease. Family and
community caregivers can also provide palliative care. For example, when patients choose to be
at home, caregivers can be trained by health workers to effectively provide the prescribed
medications and other physical and psychological support that may be needed. Friends, relatives
and others in the community can be trained to ensure that the patient is comfortable. Medical
attention from health facility workers (home visits to support the patient and to assist the caregiver)
should be available as needed. Families and friends should be provided support even after the
death of the patient. Bereavement counseling is an opportunity to support the loss of affected
loved ones and to consider future plans.
Palliative care is an essential component of a comprehensive package of care for people living
with HIV/AIDS because of the variety of symptoms they can experience - such as pain, diarrhea,
cough, and shortness of breath, nausea, weakness, fatigue, fever, and confusion. Palliative care
is an important means of relieving symptoms that result in undue suffering and frequent visits to
the hospital or clinic. Palliative care is an area of healthcare that focuses on relieving and
preventing the suffering of patients. Unlike hospice care,palliative medicine is appropriate for
patients in all disease stages, including those undergoing treatment for curable illnesses and
those living with chronic diseases, as well as patients who are nearing the end of life. Palliative
medicine utilizes a multidisciplinary approach to patient care, relying on input from physicians,
pharmacists, nurses, chaplains, social workers, psychologists, and other allied health
professionals in formulating a plan of care to relieve suffering in all areas of a patient's life. This
multidisciplinary approach allows the palliative care team to address physical, emotional, spiritual,
and social concerns that arise with advanced illness. Palliative care is an approach which
improves the quality of life of patients and their families facing life-threatening illness, through the
prevention, assessment and treatment of pain and other physical, psychosocial and spiritual
problems
4
KEY DISCUSSION POINTS
Palliative care:

Provides relief from pain and other distressing symptoms;

Affirms life and regards dying as a normal process;

Intends neither to hasten nor postpone death;

Integrates the psychological and spiritual aspects of patient care;

Offers a support system to help patients live as actively as possible
until death;

Offers a support system to help the family cope during the patient’s
illness and in their own bereavement;

Uses a team approach to address the needs of patients and their
families, including bereavement counseling, if indicated;

Will enhance quality of life, and may also positively influence the
course of illness;
A lack of palliative care support and training centres results in untreated symptoms that hamper
an individual’s ability to continue his or her activities of daily life. At the community level, lack of
palliative care places an unnecessary burden on family, hospital or clinic resources.
5
PURPOSE OF THE MANUAL
This manual stem from a report of a study commissioned by VSO-RAISA Southern African region
to determine the feasibility of establishing a Palliative Care Centre (PCC) in Vhembe district,
Limpopo province, South Africa. The main findings of the study were as follows:
1) There is a dire need for palliative care and support centre in the region because of the
following factors:
 There are higher incidents of individuals requiring palliative care.
 The hospital system is unable to carry the services of palliative care since effectively and to
the satisfaction of the communities. Most palliative services are conducted by Home based
carers on a voluntary basis.
 Although home based carers in the region receives training, it is usually adhoc and thus the
impact is often not measurable.
 Palliative care givers themselves require continuous training, in-service training and support
of a holistic nature. Currently they do not have a base for such support in the region.
 Limpopo and Vhembe is a gateway for Zimbabwe, Mozambique, Botswana, Swaziland and
the rest of Southern Africa and Africa. The establishment of a palliative care centre in the
region will cater for the palliative care needs of emigrants from the rest of SADC.
 The training and support needs extend beyond CHBC programmes to include care givers
in homes and family
2)
There are more than 50 CHBC organizations in Vhembe district, all of which render
palliative care; however none of these receive focused palliative care training and support.
3)
Palliative care training and support centre requires a comprehensive multidisciplinary
approach, and thus there will be a need for robust mobilization and advocacy and
collaboration with the community, government and Hospitals and clinics.
The following were recommendations of the study:


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
A palliative care, training and support centre be establish to cater for palliative care needs on
individuals and CHBC programmes in the Southern African region.
Palliative care curriculum is developed as informed by stakeholders such as CHBC
programmes, health professional, etc. Such curriculum should address the holistic needs of
home based carers.
Opportunities to register and certificate the training through compliance with relevant bodies
such as SAQA should be explored.
Although the centre may be established in phases, it should cater for holistic, multidisciplinary
needs of the carers and the clients.
Palliative care centre cannot be successful unless supported by government and
communities. Palliative care advocacy drive should be put in place for community mobilization
and ownership.
In addition, although the landscape of palliative care is not very clear in the SADC region,
pockets of good practice care and support centers are available that the rest of the continent
can learn from. A benchmarking visit to selected centers is recommended in this regard.
Based on the above, this manual was developed aligned to South African Qualification Authority
(SAQA) registered unit standard: Assist with Palliative care SAQA US ID: 119565 and has 6
credits. The unit standard is for persons required to assist with the provision of palliative care to
persons whose disease is no longer responsive to curative treatment and to provide relevant
information to patients and families in respect of symptom management and pain control. People
credited with the unit standard are able to:
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
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Demonstrate fundamental knowledge of the concept of palliative care
Assist in the management of total pain
Demonstrate a fundamental understanding of grief, loss and bereavement
This manual should be used for people who are already trained in home based care. The duration
of training is 3 days (8 hours x 3) in succession.
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SESSIONS
WELCOME AND INTRODUCTION
To make participants comfortable and free to participate in a
non-destructive manner.
TOPICS
LEARNING
OUTCOMES
RESOURCES
[ALL
MODULES]
After completing this learning unit, the participant should:

Remember the names of fellow participants

Express their expectations of the course

Discuss what is expected of them

Know the course outline





Name Tags
Koki pens
Bostic
Flip chart
Flipchart stand
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TIME
Approx.
30 MINUTES
Welcome and Icebreaker
Process: Request all the participants to form a circle. To introduce the
exercise, say: "I am going to face and make eye contact with the person on
my left, and we will try to clap our hands at the same moment
[demonstrate]. Then, she or he will turn to the left and clap hands at the
same time with the person next to her or him. We will ‘pass the beat’
around the circle. Let’s try it now and remember to make eye contact and
try to clap at the same time." The rhythm builds up and the educator can
call out "faster" or "slower" to increase the speed of the game. Once the
handclaps have passed around the circle, say: "Now we will try to make the
rhythm go faster and faster. Always be ready because we might begin to
send additional rounds of handclaps around the circle, chasing the first
one."
The ‘beat’ begins to be passed around the circle, from one person to the
next. Remind people to keep it going, even if it stops for a moment when
someone misses the beat. After the first round of handclaps is wellestablished, start a new round. Eventually there might be three or four
beats going around the group at the same time. This will often result in a
sort of enjoyable, high-energy chaos in the group with lots of laughter.
As much as we encourage structured volunteer programmes there is still a
place for spontaneity. Motivations of volunteering
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Outline
Feedback
Briefly ask whether the participants have enjoyed the game. Ask the group to
describe, without singling anybody out, what happens in an interdependent team
game when a player drops the ball. Remind the group that, to get the best results
when working as a team, everyone is interdependent and depends on the other
team members.
1.2 Ground rules
Process:Do ice breaker “fire fire”. Tell participants that when you say “fire fire”,
they should run around the room towards all directions. When you call a number,
let’s say “four”. Participants should stand being four, until may be you say a number
which is half the group, if they group has twenty members, you say ten. Then each
ten become a group. Request each group discuss the ground rules to be followed
during the whole duration of workshop. Let each group present the ground rules
as discussed
Feedback :Common ground rules include:
•
Respecting each other, even when you disagree
•
Agreeing to participate actively
•
Having the right not to participate in an activity that makes you feel
uncomfortable
• Listening to what other people say, without interrupting them
•
using sentences that begin with "I" when sharing values and feelings (as
opposed to "you")
•
No "put-downs" (i.e., snubbing or humiliating people on purpose)
•
Respecting confidentiality
•
Being on time
1.3 Expectations
Process
 Supply each participant with a piece of paper.
 Request each participant to write his/her expectation from the life
orientation workshop.
 Learners should not write their names.
 Collect all the papers and redistribute them to different learners.
 Let learners come and paste the expectations on the board grouping them
based on similarities.
 Assess which expectations are likely to be met in the course of the training
workshop, and which ones may go beyond its scope.
 At the end of the session, a review of these initial expectations could be
part of the evaluation.
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SESSIONS
WHAT IS PALLIATIVE CARE
TOPICS
To assist participants to fully understanding palliative
care.
LEARNING
OUTCOMES
At the end of this session, participants should be able to:
 Explain the meaning of Palliative care
 Discuss the importance of rendering palliative care
 Identify patients who need palliative care.
 List the goals of palliative care
 Discus the principles of palliative care
 Explain the models of palliative care
 Discuss barriers to palliative care
TIME
Approx.
1 hour
World Health Organization statement define
palliative care as “an approach that improves
the quality of life of patients and their families
facing the problems associated with life
threatening illness through the prevention and
relief of suffering by means of early
identification and impeccable assessment and
treatment of pain and other problems, physical,
psychosocial and spiritual.”
What is Palliative
care
Palliative care is specialised medical care for people with serious illnesses. It focuses on relief
from the symptoms, pain and stress of serious illness in whatever prognosis.
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Feedback: The following are some of the meaning of the concept “palliative”

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Soothing
Comforting
Painkilling
Reassuring
Supportive
Relaxing
Mollifying
Activity


Divide the participants into 6 groups:
Let each group discuss one of the following
topics:
The importance of rendering palliative care

Patients who need palliative care.

The goals of palliative care

The principles of palliative care

The models of palliative care
 Barriers to palliative care
Let each group choose a scriber and a reporter. At the
end of 10 minutes, request the reporters from each
group to come and present starting from first group.
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Outline
Feedback
2.2 When does the illness become palliative
 Proof of progressive irreversible disease
 Lack of response to treatment
 Exhaustions of treatment options
 Patient wish for discontinuation of life prolonging medicines
2.3 Goals of palliative care
 To relief from suffering
 Treatment of pain and other distressing symptoms
 To maximise the quality of life
 To provide psychosocial and spiritual care
 To provide support to help the family during the patience illness and
bereavement.
2.4 Principles of palliative care
 Provides relief from pain, shortness of breath, nausea and other
distressing symptoms;
 Affirm life and regards dying as a normal process;
 Intends neither to hasten or postpone death;
 Integrates the psychological and spiritual aspects of patient care;
 Offers a support system to help patients live as actively as possible
 Offers a support system to help the family cope
 Uses a team approach to address the needs of patients and their families
 Will enhance quality of life
 Is applicable early in the course of illness, in conjunction with other
therapies that are intended to prolong life such as chemotherapy.
2.5 Models of palliative care
 In-patient care: this may be part of hospital ort an independent free
standing unit
 Community service: This may be through advice and support, or hands
on nursing to patients home
 Day units: This may be day care centres or hospices where patients are
taken from their home in the morning and returned back in the evening
 Hospital palliative care team: This team provide palliative care in the
specialist hospital and they facilitate provision of quality palliative care in
all wards.
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Barriers to palliative care

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Physician: late referral, poor prognostication, lack of
communication skills to address issues of death and
dying, reluctant to refer due to fear of loss of income.
Patient: unrealistic expectation, believe, lack of
advance care planning, denial, lack of access.
Social: poverty, ethnic minorities, language barriers and
societal values.
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MODULE 3
THE ROLE PLAYERS IN PALLIATIVE CARE
Rationale
To assist participants to know the Palliative care team and requirements for
being an effective palliative care provider. To assist the clients in dealing with
ethical principles in palliative care.
Objectives
At the end of this session, participant should be able to:
 List members of multidisciplinary teams to be involved in palliative care.
 List places where the patient/family members can get assistance regarding
palliative care.
 Describe qualities and skills necessary for rendering quality palliative care.
 Debate major ethical principles in palliative care.
 Plan a day.
Duration
3 Hours
Outline
Process: Divide participants into three groups. Request 1st to group list
members of multidisciplinary teams to be involved in palliative care, 2nd group
to List places where the patient/family members can get assistance regarding
palliative care and 3rd to Describe qualities and skills necessary for rendering
quality palliative care
Feedback
3.1 Palliative care team
Knowledge of palliative care team who need to be contacted according to
patient’s need is important as palliative care utilises multidisciplinary approach
in order to address physical, emotional, spiritual and social concerns related
to illness. The following are some of the members of multidisciplinary team:
 Family members
 Friends
 Neighbour
 Community member
 Physicians
 Nurses
 Dentists
 Professional counsellors;
 Social workers;
 Physiotherapist
 Dieticians
 Occupational therapist
 Paramedics
 Traditional healers and
 Spiritual healers.
3.2 Places to seek help
The following are some of the places where help can be sought depending
on type of problem; patients and/relatives need and availability:
 Clinics;
 Hospitals;
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Hospice
Nongovernmental organizations (NGO) dealing with palliative care;
Community based organizations focusing palliative care
Places of safety, such as life care centres;
Churches;
House of traditional leaders
Municipal structures
3.3 Qualities and skills required for being an effective palliative care
provider
 A warm personality, evidenced by
being friendly, respectful,
reassuring, relaxed, non-threatening, patient, tactful, willing to help,
understanding, responsive, comforting, accepting, supportive,
considerate and appropriate humour.
 Honest and truthful
 Healthy
 Well groomed
 Conscientious
 Good social skills,
 A manner that encourages patient to share their ideas and skills.
 Strong organization skills that maximize the use of resources.
 The skill to identify patient’s problems.
 Enthusiasm.
 Resourceful
 Domesticated
 Innovative
 Organised
 Helpful
 Observant
 Meticulous
 Dedicated
 Competent
 Good leader
 Flexibility in response to the changing needs of the patient
 Knowledge of the death and dying process
 Competent home based carer
3.4 Major ethical principles in palliative care
Activity: Put two charts on the opposite site of the wall, one written ‘agree’
and the other onewritten ‘disagree’. Read statements related to the rights of
patients. Those who agree should go to ‘agree’ and those who disagree should
go to ‘disagree’ corner. Let participants defend their decisions.
Feedback: Explain the following ethical principles:

Autonomy (respecting the values of patient). Respect the patient rights
to say no. Do only what you are called to do, don’t start changing the
rules, routines and the setting.
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Beneficence and non-maleficence (choice of therapeutic strategy and
decision making such as truth-telling and choice of medication)
Justice (The balance between personal need and social resources as
in the selection of care
Informed consent
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Planning the day
Activity: Divide participants into two groups. Request one group
to discuss the aspects to be considered when planning the day
and the send group to draw a plan of the day of palliative care
provider.
Feedback:The palliative care provider should have a daily plan.
The plan will depend on the need of the patient and the time
schedule of other members who may need to be involved.
volunteering, national volunteering, accountability, rights-based
approaches, partnership, partnership principles. Participants discuss the
meaning of these terms in pairs (2 minutes) and to share in plenary.
Facilitator then presents some definitions of these terms on power point
slide.
The plan should include
done:
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what need to be
on waking up,
after breakfast,
mid-morning,
before lunch,
after lunch,
after resting,
mid-afternoon refreshment,
late afternoon,
after supper and
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Aspects which need to be covered include
 before bed .the following
 Taking vital signs
 Assisting with bedpan
 Bed making
 Breakfast
 Giving medicine
 Bathing
 Cleaning the room
 Refreshments
 Visiting times
MODULE 4
BASIC COMMUNICATION SKILLS
Rationale
To empower participants with communication skills to enable them to
communicate effectively with their patients, family members and other
members of multidisciplinary team.
Objectives
At the end of this lesion, participants should be able to:
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Duration
Resources
Outline
Explain ways of encouraging active participation.
List obstacles to proper active participation to care.
Identify aspects which necessitate referral of clients.
Discuss listening.
Describe basic empathy.
Demonstrate questioning skills.
Explain the importance of summarizing.
Demonstrate ways of ccommunicating with patients with special
needs.
4 hours
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Koki pens
Bostic
Flip chart
Flipchart stand
Ear plugs
Eye blinders
Communication is a key to build conducive relationship with the patient and
family members.
Activity: Divide participants into four groups. Request each group to discuss
two objectives and come up with different presentation method to give
feedback. It may be a role play, formal demonstration, debate or any method.
Feedback
4.1 Encouraging active participation


Build on what patients already know.
Ask more “what” question instead of “why”.

Avoid dominating the session (don’t always talk, let others talk.

Respect diversity of patients.

Create a warm and friendly atmosphere which is non-threatening
where patients will feel free to communicate and ask questions.
4.2 Obstacles to proper active participation
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Not listening to what patients are saying as it discourages patients from
participating to their care.
Too much talking where patients will keep on listening to your views.
Putting up barriers like using a foreign language or big words which
patients do not understand.
Interrupting while patient is talking.
Bad time management.
4.3 Knowledge of referral time
Even when patients are terminally ill, there are other circumstances
necessitating referral to other health care providers which include:
 When you are becoming emotionally attached to the patient.
 When you are not coping.
 On request by patient or relatives.
 When the patient’s condition has changed.
4.4 Listening
Listening is the key to proper communication. Listening refers to the ability of
palliative care provider to capture and understand the messages patients
communicate as they tell their stories, whether those messages are
transmitted verbally or nonverbally.
Active listening involves the following four skills:



Listening to and understanding the patient's verbal messages. When
a patient tells you his or her story, it usually comprises a mixture of
experiences (what happened to him or her), behaviours (what the
patients did or failed to do), and affect (the feelings or emotions
associated with the experiences and behaviour). The care-giver has to
listen to the mix of experiences, behaviour and feelings the patient
uses to describe his or her problem situation. Also “hear” what the
patient is not saying.
Listening to and interpreting the patient's non-verbal messages. Care
givers should learn how to listen to and read nonverbal messages such
as bodily behaviour (posture, body movement and gestures), facial
expressions (smiles, frowns, raised eyebrows, twisted lips), voicerelated behaviour (tone, pitch, voice level, intensity, inflection, spacing
of words, emphases, pauses, silences and fluency), observable
physiological responses (quickened breathing, a temporary rash,
blushing, paleness, pupil dilation), general appearance (grooming and
dress), and physical appearance (fitness, height, weight, complexion).
Care givers need to learn how to “read” these messages without
distorting or over-interpreting them.
Listening to and understanding the patient in context. The patient
should listen to the whole person in the context of his or her social
settings.
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
Listening with empathy. Empathic listening involves attending,
observing and listening (“being with”) in such a way that the care givers
develops an understanding of the patients and his or her world. The
care giver should put his or her own concerns aside to be fully “with”
their patient.
Active listening is unfortunately not an easy skill to acquire. Care givers should
be aware of the following hindrances to effective listening:

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
Inadequate listening: It is easy to be distracted from what the patient
is saying if one allows oneself to get lost in one's own thoughts or if
one begins to think what one intends to say in reply. Care givers are
also often distracted because they have problems of their own, feel ill,
or because they become distracted by social and cultural differences
between themselves and their patients. All these factors make it
difficult to listen to and understand their patients.
Evaluative listening: Most people listen evaluative to others. This
means that they are judging and labeling what the other person is
saying as either right/wrong, good/bad, acceptable/unacceptable,
relevant/irrelevant etc. They then tend to respond evaluative as well.
Filtered listening: We tend to listen to ourselves, other people and the
world around us through biased (often prejudiced) filters. Filtered
listening distorts our understanding of our patients.
Labels as filters: Diagnostic labels can prevent you from really listening
to your patient. If you see a patient as “that old lady who is dying”, your
ability to listen empathetically to her problems will be severely distorted
and diminished.
Fact-centered rather than person-centered listening: Asking only
informational or factual questions won't solve the patient’s problems.
Listen to the patient's whole context and focus on themes and core
messages.
Rehearsing: If you mentally rehearse your answers, you are also not
listening attentively. Care givers who listen carefully to the themes and
core messages in a patient’s story always know how to respond. The
response may not be a fluent, eloquent or “practiced” one, but it will at
least be sincere and appropriate.
Sympathetic listening: To sympathise with someone is to become that
person's “accomplice”. Sympathy conveys pity and even complicity,
and pity for the patient can diminish the extent to which you can help
the patient.
4.5 Basic empathy


Basic empathy involves listening to patients, understanding them and
their concerns as best as we can, and communicating this
understanding to them in such a way that they might understand
themselves more fully and act on their understanding.
To listen with empathy means that the care giver must temporarily
forget about his or her own frame of reference and try to see the
21


patient's world and the way the patient sees him or herself as though
he or she were seeing it through the eyes of the patient.
Empathy is thus the ability to recognise and acknowledge the feelings
of another person without experiencing those same emotions. It is an
attempt to understand the world of the patient by temporarily “stepping
into his or her shoes”.
This understanding of the patient's world must then be shared with the
patient in either a verbal or non-verbal way.
Some of the stumbling blocks to effective empathy are the following:






Distracting questions. Care givers often ask questions to get more
information from the patients in order to pursue their own agendas.
They do this at the expense of the patient, i.e. they ignore the feelings
that the patient expressed about his or her experiences.
Using clichés. Clichés are hollow, and they communicate the
message to the patient that his or her problems are not serious. Avoid
saying: “I know how you feel” because you don't.
Interpreting. The care givers should respond to the patient’s feelings
and should not distort the content of what the patient is telling them
through own interpretation.
Parroting: To merely repeat what the patient has said is not empathy
but parroting. Care givers who “parrot” what the patient said, do not
understand the patient, are not “with” the patient, and show no respect
for the patient. Empathy should always add something to the
conversation.
Sympathizing: Empathy is not the same as sympathy. To sympathise
with a patient is to show pity, condolence and compassion - all well
intentioned traits but not very helpful in caring for the patient.
Confrontation and arguments: Avoid confrontation and arguments
with the patient.
4.6 Probing or questioning
Probing involves statements and questions from the care givers that enable
patients to explore more fully any relevant issue of their lives. Probes can take
the form of statements, questions, requests, single word or phrases and nonverbal prompts.
Probes or questions serve the following purposes:




to encourage non-assertive or reluctant patients to tell their stories
to help patients to remain focused on relevant and important issues
to help patients to identify experiences, behaviors and feelings that
give a fuller picture to their story, in other words, to fill in missing pieces
of the picture
to help patients to move forward in the helping process
22

to help patients understand themselves and their conditions more fully
Keep the following in mind when you use probes or questions:


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


Use questions with caution.
Don't ask too many questions. They make patients feel “grilled”, and
they often serve as fillers when care givers don't know what else to do.
Don't ask a question if you don't really want to know the answer!
If you ask two questions in a row, it is probably one question too much.
Although close-ended questions have their place, avoid asking too
many close-ended questions that begin with “does”, “did”, or “is”.
Ask open-ended questions - that is, questions that require more than
a simple yes or no answer. Start sentences with: “how”, “tell me about”,
or “what”. Open-ended questions are non-threatening and they
encourage description.
4.7 Summarizing
It is sometimes useful for the care givers to summarise what was said in a
session so as to provide a focus to what was previously discussed, and so as
to challenge the patient to move forward. Summaries are particularly helpful
under the following circumstances:



At the beginning of a new session. A summary of this point can give
direction to patients who do not know where to start; it can prevent
patients from merely repeating what they have already said, and it can
pressure a patient to move forwards.
When a session seems to be going nowhere. In such circumstances,
a summary may help to focus the patient.
When a patient gets stuck. In such a situation, a summary may help to
move the patient forward so that he or she can investigate other parts
of his or her story.
4.8 Communication in special cases
Let the participants’ role play, one being a patient with one of the following
challenges, and one being a care giver. Let other participant give feedback.

The patient who cannot hear: For those who can lip- read, speak
slowly looking at them. Make sure that your expression is congruent
with what you are saying. Learn some basic sign language. For the
aged or some conditions which affect hearing, lip-reading may be
difficult. Learn and teach them some informal sign to communicate.
Touching and smiling is very important for this group of patients. If a
person can read, use writing for clarification of some information.
Avoid talking without involving them as they become highly suspicious.
23
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
The patient who cannot speak: Patient may lose the speech due to
some physical condition such as stroke, cancer of the mouth, larynx or
any other conditions. Care givers need to be patient as the patient is
attempting to talk. Speech therapist may be used if available. Have
flash cards which may be used by patients for basic needs and
routines. Talk fluently with them as if they were answering back.
The patient who cannot see: Announce your presence by talking
before you touch them. Don’t move their belongings or any items
without prior unnecessarily to ensure that they become accustomed to
their environment.
The patient who cannot understand: This may be due to language
barrier or cultural differences. Try to learn patients’ language and
culture so that you should be congruent with their needs. Speak simple
basic language. Use the interpreter if it comes to a push.
The confused patient: First find the source of confusion which may
be due to old age, malaria, high temperature, dehydration, low blood
sugar and electrolyte imbalance. Put all materials which may injure the
patient away. Don’t argue with confused patient. Try to nurse in a
familiar setting with familiar faces.
24
MODULE 5: WHY PALIATIVE CARE
To provide skills and knowledge of how to manage clients’
fears, needs and assessments.
At the end of this session, participants should be able to:




Outline
List the fears of patients with terminal illness.
Identify the needs of terminally ill patients.
Assess the terminally ill patient.
Identify and Manage the fears effectively
Activity: Divide participants into three groups. Group 1 should discuss the
fears of terminally ill patients, group 2 the needs of terminally ill patients and
group three assessment of terminally ill patient.
Feedback
5.1 Fears of terminally ill patients
 Fear of the unknown

Loneliness

Loss of family and friends

Loss of body

Loss of self-control

Pain

Loss of identity

Physical limitations

Bing a worry for family members
25

Guilt

Dying alone

Spiritual fear
5.2 The needs of terminally ill patients
Thy need to die appropriate death which can be possible through
 Care: Need for proper pain management and assistance regarding
acceptance of physical disability
 Control: Give patients adequate and proper information. Avoid giving
them false hope. Allow them to participate in decision making
 Composure: Maintain an accepting attitude
 Compassion: walking with the patient, literally meaning to suffer with,
so plan with patient, don’t dictate to him.
 Communication: Communicate openly with the patient and give them
a listening ear.
 Continuity: Allow patient to do what they are still able to do, assist them
to maintain their lifestyle as far as you can, such as make ups.
Preserve life till death occurs. Maintain the utmost respect and
maintain confidentiality as after death, there are people connected to
the patients who are left behind.
 Closure: Allow the patient to deal with conflicts, make peace and sort
the unfinished business.
5.3 Assessment of patient
Symptoms in patients can be assessed using Edmonton Symptoms
Assessment Scale (ESAS). The scale assesses the following aspects on a
visual analog scale of 0 to 10 :
 Level of pain
 Activity
 Nausea
 Depression
 Anxiety
 Drowsiness
 Appetite
 Sensation of wellbeing
 Shortness of breath
The scale can be completed by the patient, care giver or family member. The
rating of 0 means the absence of symptom while 10 mean that the symptom
is severe.
26
MODULE 6
A HOLISTIC APROACH TO PAIN
Rationale
To teach enable participants to recognise causes of pain and managing pain
in terminally ill patients.
Objectives
At the end of this module, participants should be able to:
 List the causes of pain.
 Describe the approaches to pain control
 Discuss ways of managing physical pain,managing spiritual pain
and social pain
Time
3hours
Resources
Outline







Koki pens
Bostic
Flip chart
Flipchart stand
Data projector
Laptop
Plain papers
6.1 Causes of pain
Activity:Let participants individually write in a paper what might cause
physical, emotional or social pain to them if they are diagnosed with terminal
illness.
Feedback:Pain and discomfort may include physical, social, spiritual and
emotional pain.
Physical pain:
Physical pain may be caused by the disease, injury or be the result of social,
spiritual or emotional pain.
Emotional pain: This may be due to fear based on Fear of the unknown, ,
Loss of body, Loss of self-control, Loss of identity, guilt, Physical limitations,
Being a worry for family members, guilt or fear of dying alone
Social pain: Issues of Loneliness, Loss of family and friends isolation, cut off
community activities.
Spiritual pain:Loosing hope and meaning in life, feeling deserted or punished
by god or ancestors,Being cut off of culture, community and also cultural
issues and some rituals.
6.2 Approaches to pain control
Activity: Let participants brainstorm factors which must be considered when
managing pain to terminally ill patients.
Feedback:Approaches to pain control depends on the following
 Type of pain
 Diagnosis
 General physical status
 Organ functioning
 Prior treatment
27
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

Age
Other Medications
General conditions
NB. The key to palliative care is proper identification of symptoms, provision
of supportive care and involvement of multidisciplinary team.
6.3 Managing different types of pains
Activity: Divide participants into three groups, let each group discuss
management of one type of pain
Feedback
6.3.1 Managing physical pain
common cold
 Ensure rest
 Give extra fluids with vitamin c
 Avoid smoking
Sore throat
 gargle with warm water and salt
 Gargle and swallow a solution of water, salt, bicarbonate of soda and
disprins
 Suck throat lozenges
 Apply heating compress overnight
Blocked nose
 Use steam inhalation using vics, ‘mubibiri or any other remedies which
are used in that community
 Protect the eyes
 Steam for 10minutes if possible
 Give pain killers as prescribes
Asthmatic attack
 Give medicines as prescribed which may be tablets, aerosol sprays,
tablets or injections
 Loosen tight clothing
 Reassure the patient
 For severe attack, nebulise
 If no improvement, refer to the hospital immediately
Hiccups
Hiccups is caused by the spasm of diaphragm. It may be relieved by one of
the following:
 Sucking a pinch of sugar
 Holding breath
 Drinking water
 Breathing into paper bag
Difficulty in breathing
28
This is caused by heart or lung problem. It should be reported to doctor
immediately. Observe the colour of the skin, and factors associated with
difficulty in breathing. If possible:



Prop the patient in sitting position
Cover the patient warmly
Give oxygen if doctor have instructed you to do so. Follow all
precautionary measure when giving oxygen.
The unconscious patient
Unconsciousness may be caused by many conditions. The duration of
unconsciousness is not known. To avoid complications do the following:











Maintain a clear airway
Prevent pressure sores
Address incontinence of urine
Maintain regular bowel actions
Ensure adequate fluids and food intake through nasogastric feeding
Keep the mouth clean
Avoid dryness of the eyes
Avoid stiffness of joints
Prevent injury
Observe and keep record of vital data, secretion, level of
consciousness, intake and output, movements and any change in
condition
If a person have tracheostomy or has any stoma ensure proper stoma
care
6.3.2 Managing spiritual pain
Besides physical need, patients have spiritual needs. They deal with issues
such as what will happen to them after death, How will the family cope?
Spiritual support assist patients to cope well with the illness, offer good coping
mechanism, reduce stress level and pain level. It makes patients to cope well
with disease and face death fearlessly. Spirituality helps in enhancing
recovery from illness and even surgery. It gives people positive attitude
towards illness.



It is important to take patient’s spiritual history
Incorporate spiritual practices such as prayer, worship if you are able
Involve chaplains if the need arise who can offer the following
according to patient’s needs and religious beliefs:
o holy communion
o Offer the prayer
o Baptism
o Confession
29
NB. The spiritual rituals may differ from culture and tradition where other
people may ensure that the ancestors are consulted or some rituals to
appease the ancestors or gods such as putting snuff on the ground, ‘u phasa’,
slaughtering animals as sacrifice, etc.
Some patient’s religious believes have a great impact on the type of palliative
care to be offered to patient like some churches where they won’t allow blood
transfusion, use of ventilators, surgery, drips and artificial feeding. Spiritual
believe determine the attitude of patients towards the illness and the care
received.
6.3.3 Addressing social pain
Social pains of patients are related to isolation, boredom and being cut off
from the world. To address the social need, the following should be done
based on the interest of the patient:
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

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
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Soft music
Favourite radio or TV channel
Reading magazines
Watching goldfish in a bowl
Feeding outside, or next to the window
Put cards where the patient can see
Giving puzzle to play
Telling children stories
Assisting in some handwork like mats making, crocheting
Writing sms, letters or emails
A walk in the garden
Grooming the patient well
Sitting in the garden
Planting a flower or a port plant
Requesting the patient to do something for someone e.g. counselling,
advising or telling about what is happening in the country as reported
from the news.
If it is a child, cuddle the child frequently, give toys, building block,
playing games or anything which a child favour
30
MODULE 7
DEATH AND DYING
Rationale
To assist participant to understand the dying process and their roles in all the
stages of the dying process.
Objectives
At the end of this session, participants should be able to:
 Discuss the role of palliative care giver during different stages of death
(The path of acceptance of inevitable death, Grieving process)
 Identify factors that affect the process of death and dying.
 Discuss ways of preparing the family for the approaching death.
 Explain physical care of the patient during the terminal period.
 Discuss care of the patient during the final days or hours of life;
immediately after the last breath and after death.
Duration
Resources
Outline
4hours






Koki pens
Bostic
Flip chart
Flipchart stand
Tissue papers
Bottles of water
Caution: This session may be highly emotive as some participant may have
cared for the relative or seen a relative going through the stages of death and
dying. Allow them to express their emotions. There should be a co-facilitator
who will be able to handle the participants who break down in the process
while the facilitator is continuing with the session. At the end of the session,
all participants may need to be debriefed. If you cannot handle the session,
request somebody to do that as you may also end up breaking in the middle
of the session.
7.1 The role of palliative care giver during different stages of death (The
path of acceptance of inevitable death,Grieving process).
Process: Describe the following stages of death and dying
 Denial: This occur immediately when a patient become aware of the
fatal illness. The person will act as if nothing is happening. He may not
even follow any instruction. Do not argue with the patient. Just try and
be there and be supportive. Supply correct information to reinforce the
situation in a polite manner.
 Anger: This occur when a person start to realise that this may be true.
He may show anger, rage and resentment which can be projected to
care giver, relatives or even to God. The role of the care giver is to
understand that this is a normal process, and try to explain also to the
relatives so that they will accommodate the patient and not retaliate
also with anger. The patient may be in and out of this stage. People
should understand the aggression and do not give up giving care and
support
 Bargaining: In this stage, the patient behaves positively towards every
one, showing good behaviour, she or he may apologise to everybody
whom she think she has wronged. Some become deeply committed to
31


religious aspect and perform or follow all the ritual with the aim that
death may be postponed or be reversed. The role of the care giver is
just to be supportive and also try to explore further the purpose of
whatever activities as some behaviours may be due to deep seated
guilt.
Depression: When a patient realise that, nothing seems to be helpful,
and start to see the reality of impending death, the person start to feel
a real sense of loss and become depressed. The person my stop doing
any positive effort where he may refuse to wake-up, eat, talk, bath or
take treatment. The role of the care giver is to encourage a patient to
eat and accept help. The person should be allowed to express his fears
and sorrow in order to assist him to reach acceptance stage.
Acceptance: Acceptance is the last stage which occur when a person
has finally realise that nothing is helpful to avert death. The patient will
spent most of the time sleeping. Even when you are busy talking to
him he may just dose of or seem so emotionless. The patient may start
talking about what he has seen beyond this earth. As a care giver, your
responsibility is just to be there with the patient, avoiding too much
talking. Just listen and avoid arguing with the patient if she tell you
what she sees or hear.
Remember, the above stages do not occur chronologically as
described above; the person may start at any phase, and my go back
to the stage which she has already presented. You should also
understand the different cultural practices and religious practices such
as Christianity, Judaism, Islamic, Hinduism as this may have effect on
the type of care required when dealing with death and dying.
7.2 Factors that affect the process of death and dying
Activity: Request participants to brainstorm the factors which affect the
process of death and dying.
Feedback
 Religious beliefs
 Age (child, youth, adult or aged)
 Culture
 Marital status
 Educational status
 Temperament
 The role in the family
 Employment
 Dependency level
 Family responsibility
Activity:Divide participants into four groups. Let 1st group to discuss
Preparation of the family for the approaching death, 2nd group, Physical care
of the patient, Care during the final days or hours of life, 3rd group Care
Immediately after the last breath and 4th group to discuss care after death.
Feedback
32
7.3 Preparation of the family for the approaching death
The family also undergo the grieving process no matter how sick the person
is. If not well assisted, death may lead to confusion and unnecessary conflicts.
The following aspects need to be addressed:









Writing and signing of the will.
Checking the availability of funeral policies.
Ensuring that there are birth certificates or Identity books.
People to be notified in terms of dearth and their contact details
Funeral undertaker which is supposed to be used
Ensuring that the doctor has recently seen the patient
If there are some hidden moneys and other items, it need to be known
where they are before patient die
If there are people who need to be called before the patient die, they
should be contacted as sometimes the dying person will have a
favourite person who will be told all the secrets
Explain to the family about what to do with the body immediately after
the patient die.
7.4 Physical care of the patient














Encourage movement
If possible, continue using commode
Do frequent bathing and wiping the patient
Keep the hair well combed
Ensure that the nails are short and clean
Keep the patient well shaved
Ensure that the bed is always clean and attractive
Do two hourly turning while also attending to back and pressure part
Do regular mouth care to keep mouth clean and moist
Give small frequent amount of fluid
To relieve constipation, use suppositories regularly
Encourage family members to participate in caring for the patient
Visitors should spent brief time and limit noise
Avoid over decorating the room with many bunches of flowers and
cards
 Ensure that the patient is pain free by giving prescribed pain killers at
regular time
 Give warm milk to promote sleep
 If patients have sores in the mouth, give plain yogurt
 If patient is vomiting, report to the doctor who will order antiemetic
medicines. Support the vomiting patient to use vomiting bowl. Protect
bed linen and clothes. When the vomiting episode is over, give
mouthwash and wipe the face.
If the patient has incontinence, handle it with care as the patient may feel
embarrassed. The urine catheter may be inserted by a professional nurse, or
use condom catheter for male. For faeces, use linen savers or disposable
33
napkins. Change linen frequently and use air freshener to keep the room
freshly smelling
7.5 Care during the final days or hours of life
The process of dying differs. Some people are fully conscious till they give
the last gasp whilst others become unconscious. The following are signs of
eminent death:
 Loss of consciousness
 Difficulty in seeing
 Inability to speak
 Pale or bluish colour
 Ashen grey colour of extremities
 Cold and clammy skin
 Weak irregular pulse
 Shallow or nosy breathing
During this period, be conscious of what you say as the patient can still hear,
speak softly to the patient, encourage the family member to sit by the bed and
hold patient’s hand until the heart and breathing stops. Leave the family
members alone for some few minutes to grief and do their final goodbyes.
7.6 Care immediately after the last breath
The care giver or the family member should do the following:
 Close eyes
 Replace the dentures into the mouth
 Remove all the tubes
 Jewellery may or may not be removed based on family wishes
 Wash, or wipe the body clean, comb the hair and apply whatever the
patient use to apply on the face
 Lie the body in recumbent position, with a pillow under the chin, and
arms at the sides
 Cover the body with clean sheet
 Ensure that the surrounding is clean
 After removal of body, remove matrass and pillows to the sun, open
the window, clean the room thoroughly and ensure that all things
which are no longer needed are well discarded
7.7Responsibilities after death
Remember, as a care giver, your responsibility do not stop immediately when
the patient stop breathing or immediately after that, you still have the
responsibility to ensure that the patient is buried with respect and dignity and
also assisting the family during the grieving period
 Give the family something hot to drink
 A mild sedative may be prescribed by doctor
 Remind the family to obtain death certificates, arrange for funeral,
register death, and to ensure that the Identity book of the deceased,
the responsible family member, birth certificates of children,
34
marriage/divorce certificates, grants documents, insurance documents
should be taken along to all relevant offices to avoid running around.
Give assistance, guidance care and support till the burial.
35
36
MODULE 8
CARE OF THE CARER
Rationale
To assist participants to realizes the inherent stressors of palliative care and
enhancing them with skills of handling stress and avoiding burnout.
Objectives
At the end of this session, participants should be able to:




Duration
Resources
Outline
Explain the causes of stress and burnout amongst the palliative care
providers.
To list the signs and symptoms of stress.
To discuss ways of handling stress and avoiding burnout
To practice relaxation technique
2 Hours






Koki pens
Bostic
Flip chart
Flipchart stand
Soft music
Floor mats/ green grass
Activity: Divide participants into three groups: Let group 1 discuss the causes
of stress and burnout amongst the palliative care providers, group 2 to discuss
the signs and symptoms of stress and group 3discuss ways of handling stress
and avoiding burnout,
Feedback
8.1 Causes of stress and burnout amongst the palliative care providers
Caring for very sick and terminally ill patient is taxing on carer’s health. It needs
a carer to also take good care of him/her. This can lead to stress. Stress can be
caused by external causes or internal causes.
8.1.1Internal causes




Age: Young carers become easily stressed than older once
Personality traits, e.g. type A personality
A person self-concept: e.g., how one judge him/herself
World view: How we interpret the world around us
8.1.2 External causes


Environmental stressors: unsafe environment, noisy, polluted
Social stressors: difficulties we experience with family members,
relationships, friends,
Occupational stressors: This include helping people, lack of positive
feedback, dealing with disease and eventually death, lack of
improvement in patient’s condition, difficult patients, caring for a patient
37
with condition which has personal relevance to carer and overly invasive
and intensive relationship with the patient
8.2 Signs and symptoms of stress
Stress may manifest with emotional, behavioral, cognitive, physical and
occupational symptoms.





Emotional symptoms: Bored, angry, lonely, guilty, depressed, easily
irritable, aggressive, afraid, feeling like crying, easily frustrated, negative
attitude
Behavioral symptoms: accidents, less creative, over or under eating,
being emotional, drinking and smoking excessively, hyperactivity,
disorganized,
Cognitive symptoms: Poor decision making, less creative, forgetful,
poor concentration, sensitive to criticism, avoid challenges
Physical symptoms: Tiredness, high blood pressure, palpitations,
abdominal discomfort, sweating, vague symptoms, Headaches,
backache, frequency of micturition, tight feeling over the chest,
insomnia,
Occupational symptoms: reluctant to go to work, less motivated,
8.3 Tips for handling stress and preventing burnout





Healthy life styles:
Proper time management
Change the way you think
Do relaxation techniques
Establish and use social and support system such as family members,
having a gardener or house keeper, help by neighbors and friends, use
available community resources, seek professional help.
NB: The following tips are also useful for the stressed patients
8.4Relaxation technique: Taking a mind journey
Process: Play very soft music from the radio. Request all participants including
facilitators to switch of their telephones. Request participants to lie on a mats or
green grass. Let them be in the position where they feel more comfortable. Let
them close their eyes, imagine of a very beautiful area where they have visited
or they should create their own imaginary place. It may be a garden. Let them
focus on the beautiful flowers, the singing bird which eventually flew away. They
are left alone, the place is so quite. Lower the volume of your voice until you
keep quite. Only the sound of music is left. After 10 minutes, increase the
volume of the radio or just say loudly, suddenly two birds come back fighting,
they disturb you sleep and you wake up. All participants will wake up. Ask them
how they felt during the whole activity.
38
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University Press.Oxford and New York.
Agnes, C. (1986). The complete Handbook of Family Health Care. (2nded). East Ottowa: St John
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