Clinical Practice Development

assessment and management

of fatigue in life-limiting illness
Laura Middleton-Green

Fatigue is a complex symptom commonly experienced by people with life-limiting illnesses. It has
been identified in patients with, for example, cancer, heart failure, respiratory conditions, acquired
immunodeficiency syndrome and renal failure. It is often rated by patients as having a greater effect on
quality of life than pain. This article will explore the manifestations and consequences of fatigue. It will
propose a minimum standard for its assessment and management and describe the implementation
and evaluation of an audit, conducted in a hospice environment, designed to evaluate achievement
of this standard. Although this audit was carried out in a hospice setting, the aim of the article is
also to raise awareness of fatigue in all healthcare settings and to improve the assessment of this
debilitating symptom. Conflicts of interest: none

Key words
Audit
Fatigue
Palliative care
Symptom management

atigue is a common symptom of

advanced disease (Portenoy and
Itri, 1999). It is frequently ranked
as having greater impact on quality of life
than pain (Hoekstra et al, 2007). It has
been described as a subjective, unpleasant
symptom which incorporates total
body feelings, ranging from tiredness to
exhaustion, creating an unrelenting overall
condition which interferes with individuals
ability to function to their normal capacity
(Ream and Richardson, 1996). Fatigue has
been identified in various patient groups,
including those with cancer (Barnes and
Bruera, 2002), heart failure (Clark et al,
1995; Coats, 1996), chronic obstructive
pulmonary disease (Breslin et al, 1998),
acquired immunodeficiency syndrome
Laura Middleton-Green is Staff Nurse,
Manorlands Hospice, Oxenhope, West
Yorkshire. Email: Laura.MiddletonGreen@bradford.nhs.uk

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End of Life Care, 2008, Vol 2, No 1

(Ferrando et al, 1998) and renal failure

(Chang et al, 2001). Fatigue is also
problematic in patients with neurological
conditions such as Parkinsons disease
(Karlsen et al, 1999) and multiple sclerosis
(Egner et al, 2003). Estimates of prevalence
range from 3290% in people with
advanced cancer and 5480% in nonmalignant conditions (Solano et al, 2006).
There is consensus that the causes
and manifestations of fatigue are complex
and multidimensional (Glaus, 1998),
involving physical, psychosocial and spiritual
aspects. Physical causes of fatigue include
chemotherapy (Smets et al, 1998; Jacobsen
et al, 1999), radiotherapy (Borthwick et
al, 2003), anaemia (Munch et al, 2005),
disease progression (Breslin et al, 1998)
and co-existing symptoms such as chronic
dyspnoea or pain (Chan et al, 2005).
There is evidence that disease processes
such as tumour growth and myocardial
infarction increase cytokine levels, and
the resultant altered metabolism leads
to cachexia and fatigue (McCarthy, 2000;
Armes et al, 2004; Payne, 2004; Brown et
al, 2005).The neuroendocrine system may
also be affected by cytokine production,
exacerbating fatigue (Armes et al, 2004).
Fatigue can be caused, or worsened,
by medications, including strong analgesics,
sedatives and anxiolytics (British National

Formulary, 2007). It is also influenced by

psychosocial factors such as insomnia,
stress, depression and anxiety (Glaus, 1998;
Ly et al, 2002).The multidimensionality of
fatigue can be represented visually, through
the model illustrated in Figure 1. It is
important to note that causal relationships
between factors are not necessarily
unidirectional. For example, depression can
be a consequence as well as a cause of
fatigue (Barsevick et al, 2006).
The impact of fatigue is far-reaching
and has been explored in a variety of
qualitative studies. One interview-based
phenomenological paper identified that
carers of fatigued cancer patients are often
affected more by hopelessness than the
patients themselves (Benzein and Berg,
2005). Witnessing the fatigue of a loved
one can have profound consequences on
family roles and dynamics. Carers lacking
support from external sources will be less
able to assist a loved one with activities
of living, particularly if they are frail or
elderly (Nail, 2004).The fatigue experience
is linked with personal understanding of
mortality and deterioration (Lindqvist
et al, 2004; Potter, 2004), and has been
associated with despair and a sense of
struggle (Toye et al, 2006).
Far from being an inevitable
consequence of disease, there is emerging

Clinical Practice Development

evidence of effective interventions and
increasing understanding reversing the
causes of fatigue (Ahlberg et al, 2003).
Pharmacological interventions relating to
the aetiology of fatigue may be beneficial,
e.g. corticosteroids (Popiela et al, 1989),
erythropoietin (Cella et al, 2002), tricyclic
antidepressants (Ahlberg et al, 2003) and
psychostimulants (Vigano et al, 1995; Sarhill
et al, 2001; Bruera et al, 2003). Practical
interventions, such as provision of carers
and night sitters, as well as occupational
therapy to maximise functional coping in
everyday activities, are also vital, though
they target the impact not the aetiology of
fatigue. Non-pharmacological interventions
of benefit include gentle exercise and
physiotherapy (Porock et al, 2000; Stricker
et al, 2004), balancing rest with activity
(Ream and Richardson, 1999; Barsevick
et al, 2006) and therapeutic psychological
input (Potter, 2004).
Assessing fatigue is an important
aspect of holistic care (Armes et al, 2004)
in order to identify affected patients,
gain understanding of the meaning and
experience of the symptom and establish
a baseline against which to evaluate the
effectiveness of therapeutic interventions.
Information obtained through assessment
may vary according to the level of
expertise of the health professional.
Practitioners frequently overlook fatigue
as a distressing symptom (Coackley et
al, 2002). A questionnaire-based study of
nurses knowledge and attitudes identified
that nurses often underestimate the
impact of fatigue, demonstrating a lack of
knowledge as to its causes in advanced
disease (Miller and Kearney, 2001).
Validated assessment tools exist,
such as the EORTC-QoL (European
Organisation for Research and Treatment
of Cancer Quality of Life) tool (Knobel et
al, 2003) and the Brief Fatigue Inventory
(Mendoza et al, 1999). However, these
are rarely used in practice (Miller and
Kearney, 2001). Patients may under-report
their fatigue, believing it to be an inevitable
consequence of disease. Patients and
professionals employ increased bedrest as
a strategy, despite evidence suggesting this
may exacerbate fatigue (Stasi et al, 2003).
It is clear that fatigue impacts upon the
subjective quality of life of patients with

advanced disease.The literature suggests

that there are effective interventions
and support strategies that may be
employed to improve patients subjective
experience.The invisibility of the symptom
to professionals presents a barrier to
effective symptom management. In
order to evaluate the degree to which
professionals in a hospice setting were
aware of fatigue as a valid symptom,
as well as to explore the quality of
assessment and management of fatigue, an
audit tool was developed.

Aims and objectives

The goals of this audit were to: improve
identification of fatigue in patients; improve
patient and staff understanding of fatigue;
raise the proportion of individualised
holistic care plans; and improve
multiprofessional fatigue management.

Permission to conduct the audit

was gained from the hospices quality
improvement and governance committee.
Clinical audit is a quality improvement
process that seeks to improve patient
care against explicit criteria and the
implementation of change (National
Institute for Health and Clinical Excellence
(NICE), 2002). A minimum standard was
devised based upon a holistic concept of
fatigue (see Figure 1) as a benchmark (a
point of reference against which things
may be compared or assessed).This was:
All patients should be screened
and assessed for physical, spiritual,
psychological and social aspects of fatigue.
Reversible causes of fatigue should be
excluded.Where fatigue is identified,
individualised care plans should be in place
and regularly evaluated.

Figure 1. Model of multidimensional fatigue in life-limiting illness. Adapted from Payne (2004),
Portenoy and Itri (1999) and Ahlberg et al (2003).
Physical

Psychological

Demographics
Activity level
Disease process
Concurrent disease
Infection
Treatment
Pain
Endocrine system
Haematological system
Circadian rhythm/sleep
Altered nutrition/cachexia
Fluid/electrolyte balance
Medications

Depression
Anxiety
Impaired coping
Sleep disturbances
Cognitive problems

Fatigue
Social
Inadequate social support
Environment
Expectations
Role changes

Spiritual

Leading to...

Sense of spiritual/cultural
deficit
Existential issues
Spiritual pain
Meaning-making

A subjective, unpleasant symptom which incorporates total body feelings ranging

from tiredness to exhaustion creating an unrelenting overall condition which
interferes with individuals ability to function to their normal capacity
(Ream and Richardson, 1996)
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Clinical Practice Development

Results fed back to the organisation were
intended to assist in developing strategies
to improve practice.

Methodology
Since no existing audit tool was identified
from the literature search, the basic
quality standard for fatigue management,
produced by the Mersey Palliative Care
Audit Group (Coackley et al, 2002), was
adapted and an audit tool was developed
(Figure 2).The audit was divided into two
sections: assessment and management
of fatigue. Questions in the assessment
section aimed to identify the presence or
absence of each identified dimension of
fatigue in the model presented in Figure 1.
The management section examined the
use of individualised care planning, and the
pharmacological and non-pharmacological
interventions that were used.
A study by Krishnasamy (2000)
identified discrepancies in medical and
nursing descriptions of fatigue in patient
notes. Since the hospice maintains
multiprofessional documentation, it was
decided to specify in the audit which
professional had identified fatigue.
Selection was restricted to admissions for
symptom control rather than end-of-life
care as the latter were more likely to be
in terminal decline.Therefore, exploration
of their fatigue would be inappropriate.
Diagnosis was not restricted to cancer.
Fatigue is known to affect people with
most life-limiting illnesses (see above). Only
patient notes where fatigue was identified
were audited. Notes were searched by
hand between the years 2004 and 2006.
The first 10 sets where fatigue was
identified on admission were used.

Results and discussion

Forty-eight note sets were searched
before 10 sets were found where fatigue
was identified, implying that fatigue was
only present in 21% of patients.This is
contrary to robust evidence that up to
90% of patients with advanced disease
have problematic fatigue. It may reflect
literature consensus that fatigue is underassessed by health professionals (Miller
and Kearney, 2001). Fewer than half the
patients identified as fatigued by the health
professional mentioned their fatigue in
the weekly Palliative Care Outcome Scale
(POS) questionnaire (Higginson, 1998)
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End of Life Care, 2008, Vol 2, No 1

conducted on the unit.This could reflect

literature findings that patients underreport fatigue (Rieger, 2001). Patients may
not mention fatigue unless specifically
prompted by the health professional.This
may reflect on the health professionals
assessment and communication skills in
failing to identify the symptom through
skilful, open questioning and observation.
Hospice admission for many can
represent respite from their usual activities
of living.This can temporarily improve
patients subjective sense of fatigue but
may create issues of dependence through
the adoption of a paternalistic approach to
care. A rehabilitative approach is required
where the intention is to discharge the
patient home (Flanagan and Holmes,
1999). Patients struggling to eat and dress
may be assisted in these activities by wellmeaning nurses.The patients may not
complain of fatigue since the activities that,
under normal circumstances, exacerbated
it are no longer their responsibility.The
impact of fatigue may be under-estimated
in hospices if self-care and independence,
according to patients wishes, are not
embedded in the hospice philosophy.
Although the hospices core care
plans for lethargy and immobility were
used, only a third were individualised
to the patient, and no assessment tools
were used. Interventions focused upon
minimising the impact of immobility (e.g.
pressure relief) rather than targeting the
fatigue experience.The medical team
effectively excluded reversible causes
such as anaemia and medication sideeffects. Physical aspects were assessed
more frequently than psychosocial.The
description of the impact of fatigue tended
to be restricted to its effect on mobility,
although one mentioned inability to cook
and another explicitly described the effect
on self-care abilities.
The audit identified some revealing
descriptive terms used by patients.
One patient described weakness in
legs suggesting that his experience
was predominantly physical. Another
mentioned that the fatigue was hard on
wife, referring to his sense of loss and
changing role, the psychosocial aspect
of fatigue (Krishnasamy, 2000). In most
instances, however, patients own words

were not documented, which could

inhibit understanding of the aetiology
and subjective experience of the patients
fatigue (Krishnasamy, 2000).
An interesting finding was the coexistence of other symptoms. Although
the sample was too small to draw
significant conclusions regarding this
aspect, it appeared that pain, dyspnoea and
depression were frequently connected
with the experience of fatigue.This finding
is reflected in the literature (Dodd et al,
2001;Tanaka et al, 2002; Chan et al, 2005).
Causal relations between symptoms are
frequently unclear. Some scholars argue
that analysis of symptom clusters may be
more beneficial than attempting artificially
to divide contributory elements of the
patients whole symptom experience
(Dodd et al, 2001; Fleishman, 2004).
Barsevick et al (2006) suggest that
symptoms such as depression and fatigue
display a relationship whereby one
symptom mediates the other.Thus, the
effect of fatigue upon functional status
leads to reactive depressive symptoms.
Similarly, the physical manifestations of
depression include reduced physical
activity and social participation, all of which
are characteristic of fatigue.
A future version of the audit tool
could link interventions with each of the
four dimensions within the holistic model
(see Figure 1), e.g. day therapy referral
might fall under social fatigue intervention.
There was evidence that staff drew upon
the expertise of other members of the
multiprofessional team, e.g. counsellors
and complementary therapists. Meeting
patients information needs and exploring
realistic goals are vital aspects of fatigue
management but were rarely documented
(Barsevick et al, 2006). Patient and staff
education was felt to be an important area
for practice development. Pharmacological
management tended to concentrate on
reversing medication side-effects and
anaemia, although antidepressants and
psychostimulants were prescribed.

Limitations
Auditing patient notes may underestimate
the burden of fatigue.The communication
process between the patient and
the healthcare professional is not
straightforward. Interpretation of elements

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Clinical Practice Development

of assessment may be subjective. Patients
may present those aspects of symptom
burden they consider the professional is
expecting to hear. Similarly, professionals
may document the symptoms that are
congruent with their previous experience

and expectations. Patients views were

incorporated by auditing the POS, but
this appeared to be an inadequate tool
for self-reporting fatigue.This is possibly
because fatigue is not mentioned explicitly,
unlike pain and nausea. A comparative

study of multidimensional symptom

assessment tools identified limitations in
their comprehensiveness.This was related
to the huge variety of possible symptoms
and their complexity, as well as the
difficulties inherent in reducing subjective

Guidance for completion of audit

1. All questions to be answered either Y (yes), N (no) or X (not appropriate)
2. 10 patient records (I-X) to be selected from admissions to inpatient unit for symptom control (i.e. not terminal admissions)
3. Information to be obtained only where documentary evidence exists
4. Information to be obtained from (a) admission assessment (b) nursing care plans (c) communication sheet (d) evaluation
sheet
5. Record to be made of where information was identified. For example, if obtained from nursing notes (N), medical notes
(M), other multidisciplinary notes (O), e.g. physiotherapist, chaplain, etc. and if identified on patient-completed Palliative Care
Outcome Scale (POS) document (P).
Example question and answer: Was fatigue identified as a problem on admission? Y (M+N+P)
Audit tool
SECTION 1:
No
1
2
3
4
5
6
7
8
9
10
11
12
13
14
15
16

Question
Diagnosis
Were fatigue, weakness, tiredness or lethargy identified as a problem?
By whom?
Was a formal fatigue assessment tool utilised?
Were physical aspects of fatigue assessed?
If Y, what descriptive words were used?
Were psychosocial aspects of fatigue assessed? (e.g. effects on relationships/role)
If Y, what descriptive words were used?
Were reversible causes considered? (e.g. anaemia, hypercalcaemia)
Which causes?
Was fatigue noted to be interfering with daily activities? (e.g. mobility)
Which activities?
Was there documented evidence of patients subjective experience of fatigue? (e.g. mood, coping strategies)
What descriptive words were used?
Were any other symptoms associated with the fatigue? (e.g. depression, dyspnoea, pain)
If Y, which?

SECTION 2:
1
2
3
4
5
6
7

ASSESSMENT

MANAGEMENT

Was a lethargy/tiredness care plan in place?

If so, had it been individualised?
Was the care plan re-evaluated within 1 week of admission?
Were any non-pharmacological interventions recommended?
If Y, which?
Were any pharmacological interventions recommended?
If Y, which?

Figure 2. Assessment and management of fatigue in the inpatient unit: the audit tool.
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End of Life Care, 2008, Vol 2, No 1

Answer

Clinical Practice Development

experience to tick-box scoring (Strmgren
et al, 2002).

Implementation

Assessment/management tools
One of the goals of this audit was to
improve the identification of fatigue.
Humphris and Littlejohns (1999)
identified that the assessment process
can be aided by implementation of clinical
guidelines. However, the usefulness of
guidance in nursing should not supersede
the value of intuition, patient preference
and clinical experience (Wallin, 2005).The
development of a guide to assessment
and management of fatigue was felt
to offer potential to improve practice.

Date

However, it was acknowledged that it

would need to be flexible to promote
(rather than restrict) individualised care
planning. A core care plan (Figure 3) and
a flowchart (Figure 4) were produced by
the author, based on the model in Figure
1. Existing guidelines were drawn upon,
including the National Comprehensive
Cancer Network oncology guidelines
(Mock et al, 2000) and other fatigue
management initiatives (Portenoy and Itri,
1999). Many recommendations pertain
to cancer-related fatigue (Ahlberg et al,
2003) so it was necessary to adapt the
flowchart to non-malignant illness by
incorporating different mechanisms and
causes of fatigue (Payne, 2004).

Assessment tools have been shown

to improve the objective assessment of
symptoms (Mendoza et al, 1999; Munch
et al, 2006). Discussion with staff identified
a sense that there was already too much
assessment paperwork to complete and
that since patients already completed the
POS a further assessment tool would be
superfluous.The staff were concerned
that patients would find it exhausting or
distressing to complete another scale.
Evidence does suggest that numerical
scoring of different aspects of fatigue
can be traumatic for very ill patients as
it confirms their deteriorating condition
(Prince and Jones, 2001). Staff suggested
that sensitive exploration of fatigue over

Assessment
The patient is experiencing fatigue related to:

The patient rates their fatigue at

1.
2.
3.
1.

2.

3.

4.
5.
6.
7.
8.
9.
10.

11.

Signature/Role

10

Goal
The patient will be supported in learning coping strategies for managing fatigue
Independence will be promoted within limits of abilities
Distress related to fatigue will be reduced
Intervention delete any non-applicable
Identify any reversible causes in collaboration with team, e.g. anaemia, stress,
insomnia
Optimal management of associated symptoms, e.g. pain, dyspnoea (see related
core care plans)
Promote optimal activity levels according to patients ability and wishes, e.g. day
therapy
Offer emotional support for patient and carers
Explore realistic goal setting
Promote optimal sleep pattern (see insomnia core care plan)
Ensure adequate nutrition (see nutrition core care plan)
Promote skin integrity (see skin integrity core care plan)
Provide patient with Managing fatigue leaflet
Refer if indicated to physiotherapist, counsellor, social worker, chaplain or other
religious adviser, complementary therapist
Re-evaluate fatigue levels weekly
Evaluation see nursing notes

Figure 3. Core care plan for lethargy and fatigue.

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Clinical Practice Development

SCREEN for fatigue
How would you rate your fatigue at the moment? (0-10)
0=no fatigue 10=worst imaginable fatigue

Mild
0-3

Moderate (4-7)
to severe (8-10)

Education
Information leaflet (if appropriate)
Support

Education leaflet

ASSESSMENT
What makes fatigue better? Worse?
When does it happen? How does it affect you?
Use patients own words

Re-evaluate weekly or as needed

Physical

Spiritual

Psychological

Social

Underlying disease/anaemia
Other symptoms
e.g. dyspnoea, pain
Fluid electrolyte imbalance
Treatments e.g. chemotherapy
Related to disease process
e.g. renal/hepatic impairment,
altered nutritional status,
endocrine problems
Reduced activity level
Sleep disturbance
Infection/other comorbidities
Medications

Existential distress
Sense of spiritual/cultural
deficit
Meaning-making

Depression
Anxiety
Stress
Impaired coping
Sleep disturbances
Cognitive problems

Inadequate social support

Environment
Expectations
Role changes

TREAT REVERSIBLE CAUSES

... symptom improved?

YES

NO

PHARMACOLOGICAL
Discuss options
with doctors, e.g.
psychostimulants,
sleep medication,
antidepressants

Regular re-evaluation

NON-PHARMACOLOGICAL
Education
Activity levels, e.g. day therapy unit
Reassurance
Distraction
Psychosocial intervention
Nutritional needs
Optimise sleep quality
Carer support
Referrals to: Physiotherapy

Social worker

Occupational therapy

Complementary therapist

Chaplan/spiritual adviser

Counsellor

Figure 4. Fatigue assessment and management flowchart. Adapted from: Mendoza et al (1999), Mock et al (2000), Coackley et al (2002).

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Clinical Practice Development

What is fatigue?
Fatigue is much more than tiredness; it is a feeling of overwhelming exhaustion
most of the time. It is not improved with rest. People who have fatigue can find it
hard even to do simple everyday things such as getting dressed or having a wash.
Fatigue is much more common in people with advanced illnesses, and can be
caused or made worse by certain treatments.
What can you do?
Dont feel as though you have to just put up with your fatigue; it is a proper
symptom which the doctors and nurses will need to know about in order to be
able to care for you. Talking about it might also help with the emotional tiredness.
You may find that your friends and family can also help support you.
Energy conservation
This means doing a task using the least amount of energy possible. Allow nurses
to assist you where needed but remain independent within your own limits.
Exercise
You may not even have the energy to get out of bed, but some studies have
shown that gentle exercise, fresh air, or a change of scene can help relieve some of
the symptoms of extreme fatigue. Talk to the staff about how we might make this
work for you.
Rest
Try to keep to a sleep pattern, even though you may feel like sleeping all the time.
If you nap through the day your sleep at night may be less restful, making you
feel even more tired the next day. Some studies have shown that rest might not
necessarily improve fatigue.
Relaxation
There are many ways of helping you to rest your body and mind, and relieve
you of some of the stresses of feeling fatigued. You may wish to see our
complementary therapist who can find ways of helping you relax.
Diet
When you feel tired it is difficult to find the energy even to eat, but it can be
helpful to absorb some energy. Try eating smaller meals or snacks if full meals
overwhelm you. You can talk to the kitchen staff or nurses about any particular
preferences you might have.
Be realistic
Look at your goals, both short and long term. Make them realistic and be selective
in what you want to achieve. This may help to reduce the feelings of guilt and
anxiety that you may feel if you cannot achieve certain goals.
Equipment and other help
There may be various forms of equipment which can make it easier to manage
your fatigue, such as walking aids and wheelchairs. The physiotherapists will be able
to help you with this. Other equipment such as bathing aids, bed raisers and grab
rails may also be available. The hospice can refer you to community occupational
therapists who will visit your home and help you work out what you might need.
The social workers can also identify ways of helping you manage at home,
e.g. through arranging for carers to visit.

Figure 5. Information contained within the Managing fatigue patient education leaflet.

time would be more meaningful than a

single indepth assessment because of the
way in which the subjective experience
of fatigue would be likely to vary over
time and according to circumstances.
The importance of empathic exploration
of fatigue is not to be underestimated
(Krishnasamy, 2000). It was therefore
agreed that, instead of using an assessment
tool, a single-item rating of fatigue severity
would be incorporated into the flowchart
(Portenoy and Itri, 1999) (see Figure 4).
Lack of participation is known
to be a potential obstacle to change
(Rocchiccioli and Tilbury, 1998).To
promote involvement of all staff, copies
of the flowchart, care plan and a patient
information leaflet (see below) were
placed in prominent locations and were
also emailed to all staff, both clinical
and non-clinical. A box for comments
was made available. Flexibility is key and
continuous minor alterations to the
documents were seen as enhancement
rather than criticism of the content.
Staff may have unknowingly provided
interventions for fatigue management
(such as distraction or emotional support)
without explicitly documenting it as such,
leading to underestimation of the level
of fatigue management. It was important
to clarify that the audit results did not
necessarily represent inadequate practice,
rather that they demonstrated a lack of
documentation of practice.
When the new documentation was
approved by the hospices evidencebased practice committee, it was
incorporated into each set of notes for
assessment of patients on admission.
Practice can only be said to have altered
when professional behaviour changes
(Bennis, 2000). The minimum standard
of care was to be used as the quality
benchmark to evaluate improvement in
documentation of fatigue assessment and
management. A repeat audit 6 months
after implementing the new guidelines
demonstrated sustained improvement
in the number of individualised care
plans. In addition, there was an increase
from 0% to 48% in the number of
patients who were assessed for the
severity of fatigue. Furthermore, feedback
from patients about the information
leaflet (see below) has been positive.
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Professionals are continuing to distribute
these regularly. Continued education
and repeated audit is planned to ensure
maintenance of change.
Patient and healthcare professional education
The audit identified a lack of patient
education around fatigue. Patient
education has been shown to facilitate
development of patient-centred
symptom management (Given et al,
2002; Godino et al, 2006). Evidence has
shown the specific benefits to patients
wellbeing of understanding the causes
of fatigue, including improved levels
of wellbeing following educational
interventions (Ahlberg et al, 2003). A
patient information leaflet (Figure 5) was
developed to be provided to patients
and carers.The advice in the leaflet was
based on the National Comprehensive
Cancer Network guidelines and existing
patient information literature from other
hospice environments (Mock et al, 2000;
Wakefield Hospice, 2007).
Fatigue is poorly understood by
health professionals (Miller and Kearney,
2001). Education of nurses about
fatigue has been shown to improve
patients subjective experience (Godino
et al, 2006). Increased understanding
of the rationale for practice changes
may help overcome resistance to their
implementation (Moulding et al, 1999).
It was therefore decided to schedule an
educational session about fatigue within
the hospice. The first session was well
evaluated. The aim is to deliver it to
interested parties outside the hospice,
such as nursing home staff.

Conclusion
Hospices originally emphasised terminal
and respite care, but are increasingly
focused on specialist palliative care
provision and acute symptom control.
This shift has been accompanied by many
changes to the working environment,
including increased quantities of
documentation and more complex
symptom management procedures.
Changes such as those proposed in this
article will be favoured by some more than
others. It was important to emphasise the
usefulness of documentation in facilitating
patient care, rather than as an addition to
an existing paperwork burden.
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End of Life Care, 2008, Vol 2, No 1

The palliative care approach aims to

improve the quality of life of patients and
their families facing problems associated
with life-threatening illness, through
prevention and relief of suffering by
means of early identification, impeccable
assessment and treatment of pain and
other problems, physical, psychosocial
and spiritual (World Health Organization,
2000). Quantifiable aspects of care that
lend themselves easily to audit tend to
be favoured in quality improvement
programmes over more elusive aspects
of quality, e.g. fatigue assessment and
management (Charlton et al, 2002).
However, there is a moral and professional
imperative to prioritise improvement in
neglected aspects of care. EOLC

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Mock V (2003) Assessment and management
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362(9384): 64050
Armes J, Krishnasamy M, Higginson I, eds
(2004) Fatigue in Cancer. Oxford University
Press, Oxford
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Key Points
8 Fatigue in palliative care is a
common symptom of advanced
disease and can have a negative
impact on a patients quality of life.
8 An audit within one hospice
led to the development of a
multiprofessional assessment and
management pathway for fatigue.
8 Nurses underestimate the impact
of fatigue and lack knowledge of its
causes in advanced diseases.
8 Educating patients about fatigue
improves their coping strategies.

Clinical Practice Development

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