Fatigue

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Laura Middleton-Green is Staff Nurse, Manorlands Hospice, Oxenhope, West Yorkshire. Email: Laura.Middleton- [email protected] 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 assessment and management of fatigue in life-limiting illness CLINICAL PRACTICE DEVELOPMENT Laura Middleton-Green 28 End of Life Care, 2008, Vol 2, No 1 KEY WORDS Audit Fatigue Palliative care Symptom management 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 F 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 (Ferrando et al, 1998) and renal failure (Chang et al, 2001). Fatigue is also problematic in patients with neurological conditions such as Parkinson’s disease (Karlsen et al, 1999) and multiple sclerosis (Egner et al, 2003). Estimates of prevalence range from 32–90% in people with advanced cancer and 54–80% in non- malignant 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

description

fatigue and heart failure

Transcript of Fatigue

Page 1: Fatigue

Laura Middleton-Green is Staff Nurse, Manorlands Hospice, Oxenhope, West Yorkshire. Email: [email protected]

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

assessment and management of fatigue in life-limiting illness

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Laura Middleton-Green

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

Key words

AuditFatiguePalliative careSymptom management

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

Fatigue 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

(Ferrando et al, 1998) and renal failure (Chang et al, 2001). Fatigue is also problematic in patients with neurological conditions such as Parkinson’s disease (Karlsen et al, 1999) and multiple sclerosis (Egner et al, 2003). Estimates of prevalence range from 32–90% in people with advanced cancer and 54–80% in non-malignant 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

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Permission to conduct the audit was gained from the hospice’s 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.’

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 objectivesThe 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.

Physical

DemographicsActivity levelDisease processConcurrent diseaseInfectionTreatmentPainEndocrine systemHaematological systemCircadian rhythm/sleepAltered nutrition/cachexia Fluid/electrolyte balance Medications

Social

Inadequate social supportEnvironmentExpectationsRole changes

Spiritual

Sense of spiritual/cultural deficitExistential issuesSpiritual painMeaning-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)

Fatigue

Figure 1. model of multidimensional fatigue in life-limiting illness. adapted from Payne (2004), Portenoy and itri (1999) and ahlberg et al (2003).

Psychological

DepressionAnxietyImpaired copingSleep disturbancesCognitive problems

Leading to...

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

methodologySince 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 discussionForty-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 under-assessed 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)

were not documented, which could inhibit understanding of the aetiology and subjective experience of the patients’ fatigue (Krishnasamy, 2000).

An interesting finding was the co-existence 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.

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

conducted on the unit. This could reflect literature findings that patients under-report fatigue (Rieger, 2001). Patients may not mention fatigue unless specifically prompted by the health professional. This may reflect on the health professional’s 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 well-meaning 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 hospice’s 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 side-effects. 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

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Guidance for completion of audit1. 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 exists4. Information to be obtained from (a) admission assessment (b) nursing care plans (c) communication sheet (d) evaluation

sheet5. 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: ASSESSMENT

No Question Answer

1 Diagnosis

2 Were fatigue, weakness, tiredness or lethargy identified as a problem?

3 By whom?

4 Was a formal fatigue assessment tool utilised?

5 Were physical aspects of fatigue assessed?

6 If Y, what descriptive words were used?

7 Were psychosocial aspects of fatigue assessed? (e.g. effects on relationships/role)

8 If Y, what descriptive words were used?

9 Were reversible causes considered? (e.g. anaemia, hypercalcaemia)

10 Which causes?

11 Was fatigue noted to be interfering with daily activities? (e.g. mobility)

12 Which activities?

13 Was there documented evidence of patients’ subjective experience of fatigue? (e.g. mood, coping strategies)

14 What descriptive words were used?

15 Were any other symptoms associated with the fatigue? (e.g. depression, dyspnoea, pain)

16 If Y, which?

SECTION 2: MANAGEMENT

1 Was a lethargy/tiredness care plan in place?

2 If so, had it been individualised?

3 Was the care plan re-evaluated within 1 week of admission?

4 Were any non-pharmacological interventions recommended?

5 If Y, which?

6 Were any pharmacological interventions recommended?

7 If Y, which?

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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

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

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

Figure 2. assessment and management of fatigue in the inpatient unit: the audit tool.

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

implementationassessment/management toolsOne 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.

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

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Date Assessment Signature/Role

The patient is experiencing fatigue related to:

The patient rates their fatigue at ⁄10

Goal

1. The patient will be supported in learning coping strategies for managing fatigue

2. Independence will be promoted within limits of abilities

3. Distress related to fatigue will be reduced

Intervention – delete any non-applicable

1. Identify any reversible causes in collaboration with team, e.g. anaemia, stress, insomnia

2. Optimal management of associated symptoms, e.g. pain, dyspnoea (see related core care plans)

3. Promote optimal activity levels according to patient’s ability and wishes, e.g. day therapy

4. Offer emotional support for patient and carers

5. Explore realistic goal setting

6. Promote optimal sleep pattern (see insomnia core care plan)

7. Ensure adequate nutrition (see nutrition core care plan)

8. Promote skin integrity (see skin integrity core care plan)

9. Provide patient with ‘Managing fatigue’ leaflet

10. Refer if indicated to physiotherapist, counsellor, social worker, chaplain or other religious adviser, complementary therapist

11. Re-evaluate fatigue levels weekly

Evaluation – see nursing notes

Figure 3. core care plan for lethargy and fatigue.

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ASSESSMENT What makes fatigue better? Worse?

When does it happen? How does it affect you?Use patient’s own words

SCREEN for fatigueHow 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

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. chemotherapyrelated 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?

Regular re-evaluation

PHarmacoloGicalDiscuss options with doctors, e.g. psychostimulants, sleep medication, antidepressants

non-PHarmacoloGicalEducation Activity levels, e.g. day therapy unit Reassurance Distraction Psychosocial intervention Nutritional needs Optimise sleep quality Carer supportReferrals to: Physiotherapy Social worker Occupational therapy Complementary therapist Chaplan/spiritual adviser Counsellor

NOYES

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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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 hospice’s evidence-based 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.

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?

Don’t 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.

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

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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 educationThe 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.

conclusionHospices 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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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.

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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 patient’s 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.

EOLC

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CliniCal Practice DeveloPment

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