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Nursing assessment of anxiety and mood disturbance in a palliative patient

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DOI: 10.1136/eoljnl-2016-000026

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Nursing assessment of anxiety and
mood disturbance in a palliative
patient
Sarah Combes1,2
INTRODUCTION
1
Inpatient Unit, St Christopher’s
Hospice, London, UK
2 Anxiety can be described as a feeling of
Florence Nightingale School of
Nursing and Midwifery, King’s worry or apprehension about uncertain
College, London, UK future events; it is a normal sensation
that everyone experiences at times
Correspondence to
Sarah Combes,
(Stevenson 2010). Feeling anxious can be
sarah.combes@kcl.ac.uk beneficial as it stimulates the fight or
flight response, and helps us adapt to
Received 24 February 2016 minor stressors such as sitting for an
Revised 20 June 2016
Accepted 24 June 2016 examination or attending an interview
(Clancy and McVicar 2009). However, if
anxiety becomes persistent and severe, it
can develop into a mood disturbance and
significantly impact quality of life (Wilson
et al 2007, Watson et al 2010).
Anxiety is prevalent in chronic disease
as people are attempting to adjust to the
additional stressors and challenges their
health conditions bring (Yohannes et al
2010). Anxiety has also been shown to
be prevalent in palliative patients, par-
ticularly those nearing the end of life
(Wilson et al 2007). A recent
meta-analysis (Mitchell et al 2011),
including 24 studies throughout seven
countries, established a prevalence of
9.8% (6.8–13.2%) anxiety as a single
mood disturbance in palliative settings,
and 29.0% (10.1–52.9%) for all types of
mood disorders, including anxiety,
depression and adjustment disorder.
Palliative patients are also trying to adjust
to additional stressors, such as functional
decline, as well as trying to come to
terms with concerns including the dying
process, unresolved physical pain, and
worry about those they are leaving
behind (Spencer et al 2010).
However, while anxiety is known to be
common in palliative patients, it is under-
diagnosed and undertreated (Wilson et al
2007). Therefore, to manage the symp-
To cite: Combes S. End Life J
toms of anxiety appropriately, it is
2016;6:e000026. imperative that nurses are able to assess
doi:10.1136/eoljnl-2016- its symptoms and work as part of the
000026 multidisciplinary team (MDT). Using a
Combes S. End Life J 2016;6:e000026. doi:10.1136/eoljnl-2016-000026
NURSING CASE ASSIGNMENTS
case study approach, this paper critically
evaluates the author’s experience of
assessing and managing the anxiety of a
patient in her care. By reflecting on this
experience and drawing from the wider
literature, the paper discusses tools that
can be used to support the nursing assess-
ment and makes suggestions for future
practice. To maintain privacy and confi-
dentiality, names have been changed
throughout and patient details are limited
to those relevant to the paper (Nursing
and Midwifery Council 2015).
CASE SCENARIO
James was a man in his 70s, with a wife,
two sons, four daughters, and numerous
grandchildren. He was sociable and
stated that until his recent health pro-
blems, he had been fit, healthy and
active. Immediately before his hospice
admission, James had been admitted to
hospital with severe abdominal pain.
Here he was diagnosed with malignant
neoplasm of the rectosigmoid junction
with peritoneal metastases, and was given
a survival prognosis of a few months to a
year. Although a number of management
strategies were attempted, including the
formation of a stoma, the hospital team
were unable to reduce significantly
James’ pain so that he could go home.
Therefore, a month after his diagnosis,
James was discharged from hospital to
the hospice.
The ward doctor assessed James on
arrival and had a discussion with his
immediate family. This discussion estab-
lished that James’ preferred place of care
and death was his own home. His prio-
rity for his time spent at the hospice,
therefore, was for his symptoms to be
managed so he could return home as
soon as possible. These symptoms
included abdominal pain, anxiety, fatigue
and intermittent nausea and vomiting.
1
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NURSING CASE ASSIGNMENTS
He also had a dysfunctioning stoma and intermittent
subacute bowel obstruction.
During his 3-month stay, strategies were put in place
which successfully managed most of his symptoms.
His pain, nausea and vomiting, caused by his cancer,
were controlled by medications administered and
titrated through continuous subcutaneous infusion
(syringe driver) in conjunction with a robust plan to
manage his breakthrough symptoms. James also
visited the gym regularly as part of his rehabilitation
programme to increase his stamina and reduce fatigue.
As these symptoms were managed, James’ appetite
also increased and he began to enjoy selecting and
eating his meals.
To manage James’ anxiety, a number of pharmaco-
logical strategies, such as benzodiazepines and antide-
pressants, and non-pharmacological strategies, such as
music therapy, art therapy and massage, were used.
However, James continued to appear anxious at times
and had periods of being unable to relax or sleep on
most days. This mood escalated every few days when he
would also show signs of irritability, difficulty in con-
centrating, and had recurrent and persistent thoughts
such as the impact of his survival prognosis. At these
times he would also score his pain far higher on the
0–10 numeric pain scale, where 0 equals no pain and
10 the worst possible pain, and would require signifi-
cantly more regular breakthrough analgesia.
While discharge plans started, concerns were raised
about James’ home environment which was assessed
as far from ideal due to insufficient space for relevant
equipment, poor vehicular access, and steep stairs.
There was also concern among the MDT that James’
wife may be having difficulty accepting his stoma as
she refused any training on its management and
would leave the room if it was discussed at any
length. These concerns culminated in an MDT
meeting with James and family but despite the chal-
lenges and alternatives discussed, such as a nursing
home, James reiterated his desire for discharge home
and his family stated that they supported his decision.
The palliative care approach respects the patient’s
autonomy, enables informed decision-making, and is
based on honest, sensitive and open communication
(World Health Organization 2015). Further, one of its
quality indicators is enabling patients to be cared for
and die in their preferred place (Department of
Health 2008). As James and his family had been given
and understood the relevant information, and had
made an informed decision, plans were put in place to
enable that to occur. These included advising the local
services, including district nurses, arranging a home
visit from the occupational therapist to assess what
equipment was required, and James having a trial visit
home for a few hours.
Three days before discharge day, James became less
well. He was more fatigued, weaker, sleeping for long
periods, and eating less. He reported abdominal pain
2 Combes S. End Life J 2016;6:e000026. doi:10.1136/eoljnl-2016-000026
more regularly, and at higher levels than was usual for
him. He also seemed to have deteriorated psycho-
logically with his anxiety, restlessness, and occasional
agitation becoming more regular and severe.
However, he maintained he was looking forward to
going home.
ASSESSMENT
High quality, relevant, person-centred care requires a
robust, holistic assessment (National End of Life Care
Programme 2010). The palliative care approach calls
for practitioners to consider an extensive range of
biopsychosocial and spiritual elements important to
patients, and those significant to them; for example,
physical pain, nausea, finances, family relationships,
and existential distresses such as hopelessness, fear of
being a burden or the desire for death (Chochinov
et al 2006). Assessment of these multifactorial ele-
ments requires excellent interpersonal communication
skills with patients, their family and the MDT (Pearce
and Duffy 2005), excellent listening skills, and the
ability to develop a trusting therapeutic relationship
where patients are able to express their needs and
concerns honestly (Pettifer 2013). It is within this
context that nurses must attempt to access accurately
patient needs, establish possible care options and their
anticipated advantages and disadvantages, select the
most appropriate options, and be able to justify their
decisions (Standing 2010).
The rationale behind James’ assessment were the
changes in his physical and psychological presentation
on this shift when compared with a few days before,
knowledge of his stated and previously assessed needs,
the therapeutic relationship built over the previous
weeks, and the element of change, in this case his
planned discharge. James’ presentation, actions and
words appeared incongruous. While James continued
to insist he was excited to be going home, he was
requesting breakthrough analgesia regularly and rating
his pain increasingly higher on the 0–10 numeric scale
despite his breakthrough medication. His symptoms
of anxiety were also more frequent and severe, and he
became more restless and agitated with the MDT and
his daughter who was visiting him. These elements
together led to an instinctive realisation that some-
thing was wrong.
The author’s initial thought was that James’ current
psychological state of anxiety or mood disturbance may
be due to his imminent discharge, even though he was
resolute about going home. According to Watson and
Rebar (2014), noticing or perceiving something is dif-
ferent to how it is expected to be can be the first step
in the provision of excellent nursing care.
During his stay at the hospice, the author felt she
had developed a trusting therapeutic relationship with
James and believed by finding the correct way to ask
him, he may voice his concerns. Consequently, rather
than asking how he felt about going home, which had
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not elicited any concerns over the previous few days,
another approach was attempted by stating ‘I am con-
cerned about you going home’. James immediately
said he was too; this statement opened up the conver-
sation and, although brief, allowed him to express that
he wanted to stay at the hospice for terminal care. It
is not possible to know why James had not felt able
to express his concerns before. However, perhaps the
previous question, which had focused on his feelings
about going home, had not addressed whether he felt
any concern about discharge, and this more direct
question allowed him to express his concerns.
DISCUSSION OF JAMES’ CARE
To evaluate critically this assessment, on reflection,
improvements could have been made. Clinical judge-
ment and decision-making skills were used, as were
interpersonal skills and the previously established
therapeutic relationship. These elements could be seen
in part as nursing intuition, acknowledged throughout
the literature as a key element in decision-making.
Developed through clinical practice, knowledge, and
education, nurse intuition is more usual in experi-
enced nurses (Benner 2001, Karns Payne 2015), and
in this case was assisted by the established therapeutic
relationship and other knowledge documented above.
Nevertheless, the conclusion that James’ discharge
was the likely cause of his anxiety and increased pain
reporting was reached swiftly; while on this occasion
it appeared to be correct, it is important not to make
assumptions for palliative care assessments to be
effective (Glass et al 2006).
An alternate assessment could be that James was
experiencing total pain, a concept whereby pain is
accepted as not purely physical, but something that is
caused or modulated by the interaction between phy-
sical, emotional, psychological, social and spiritual ele-
ments (Saunders 1964). This complexity means pain
is a unique experience for each individual, and can be
difficult to assess and manage (Fink et al 2015). James
had, until recently, seen himself as the family head
and as a fit, healthy and sociable man. It may be pos-
sible that he was experiencing difficulties accepting his
recent diagnosis along with the changes it had
brought to his life and future plans, which in turn
may have increased the severity and regularity of his
physical pain experience.
Further, James’ health deterioration, which also
included confusion, fatigue, reduced thirst and appe-
tite, and ability to swallow, may have indicated he was
entering the last few days of life (Sykes 2004, Watson
et al 2010). In this final stage, patients may experience
terminal agitation, a severe anxiety state which most
often appears 1–2 days before death, although the
symptoms may begin up to 7 days earlier (Chirco et al
2011). A patient experiencing terminal agitation will
likely have a labile mood, like James, and exhibit fluc-
tuating symptoms including severe anxiety,
Combes S. End Life J 2016;6:e000026. doi:10.1136/eoljnl-2016-000026
NURSING CASE ASSIGNMENTS
restlessness, confusion, disorientation and experience
visual, olfactory or tactile hallucinations (Heidrich
and English 2015). Although these symptoms may
mean a patient is close to death, these should not be
seen as an accepted part of the dying process. Instead
a full, holistic assessment should be completed to
assess for reversible symptoms (Irwin et al 2013).
ASSESSMENT TOOLS
While nursing intuition was a valuable skill in this
case study, in most situations, tools should be used to
help achieve a more holistic, systematic, and consistent
assessment such as the aide-mémoire PEPSI COLA
suggested by the Gold Standards Framework (Thomas
2003). This guides practitioners through nine assess-
ment domains (table 1). However, although the check-
list provides reminders and suggestions for each
domain, Reynolds and Croft (2010) believe it does
not specify the elements sufficiently enough which
may lead to inconsistencies as healthcare professionals
interpret and use the form differently.
A more extensive tool for use with palliative
patients in the UK was developed and evaluated by
McIlfatrick and Hasson (2013). This was based on
two relevant validated tools (National Cancer Action
Team 2007, McCormack et al 2008) developed
through an iterative process with both specialist and
non-specialist multiprofessional palliative care practi-
tioners, and piloted throughout 12 clinical sites,
n=132. However, the study acknowledged that
although assessment tools can help structure discus-
sions, due to the complex and multifaceted nature of
holistic assessments, the experience, education, and
Table 1 Domains of the PEPSI COLA checklist (Gold Standards
Framework 2009)
Areas to consider assessing include
P Physical Symptoms, medication review, side-effects,
etc.
E Emotional Psychological assessment
P Personal Needs related to culture, ethnicity,
spirituality, sexuality
S Social support Social care needs, welfare concerns, carer
assessments
I Information and Ensuring the mode of communication is
communication appropriate, establishing a key worker,
ensuring all plans and assessments are
documented and shared appropriately with
patient, significant others and MDT
C Control and autonomy Assessment of mental capacity, establishing
preferred place of care and death
O Out-of-hours Identifying appropriate services, ensuring all
relevant out-of-hours services are aware of
patient preference
L Living with your illness Establishing rehabilitation needs, referral to
other services, planning end-of-life care, if
appropriate
A Aftercare Bereavement risk assessment, family support
MDT, multidisciplinary team.
3
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NURSING CASE ASSIGNMENTS
commitment of the practitioner to ensuring holism is
of paramount importance.
Holistic assessment is the gold standard practi-
tioners should strive to achieve. Nevertheless, one of
these or other similar robust and lengthy tools may
not have been appropriate in James’ case due to his
anxiety levels at the time of assessment. However, a
valid and reliable screening tool may not have put too
great a burden on James, and could have aided the
consistency of the assessment decision.
The Hospital Anxiety and Depression Scale
(Zigmond and Snaith 1983) is one of the most com-
monly used screening tools in general, oncological,
and palliative settings (Mitchell et al 2010). Using a
self-report measure with two subscales, anxiety and
depression, it asks patients to score their mood over
the last week from 0 to 3. However, despite establish-
ing its use as a screening tool, Mitchell et al (2010)
found that given its length, complexity of scoring, and
mix of subscale questions, it was not always used clini-
cally. Rose and Devine (2014) also cited clinical con-
cerns regarding the reliability and validity of anxiety
screening tools by stating that the overlap between
normal anxiety reaction and clinical anxiety disorders,
the wide variety of anxiety symptoms, and the length
of some tools made accurate diagnosis difficult.
In palliative care, brief screening tools are preferred
as these reduce respondent burden (Hjermstad et al
2011). One common tool for anxiety and depression is
the Distress Thermometer (Roth et al 1998, National
Comprehensive Cancer Network 2016). This self-
report measure uses a visual analogue scale to plot dis-
tress over the past week from 0 ‘no distress’ to 10
‘extreme distress’, alongside a checklist where patients
mark perceived problems within five domains: prac-
tical, family, emotions, spiritual/religious or physical.
While its sensitivity is high and therefore able to detect
distress, its specificity—the ability to exclude those
who are not distressed—was poor, and therefore its
use is limited in clinical practice (Ryan et al 2012).
The shortest brief screening tools are single-item
tools that ask only one question. These have been
found to be valid and reliable in a number of studies,
and have shown benefit over multiple-item tools as
they are easily understood, time-efficient, and can be
used to assess change over time (Rosenzveig et al
2014). One key study, (Chochinov et al 1997), com-
pared four brief screening tools for depression in
patients with advanced cancer, n=197, and found the
single question, ‘Are you depressed?’ was most accur-
ate in establishing depression.
In James’ assessment, while not recognised at the
time, the statement used ‘I am concerned about you
going home’, appears to have been adapted form of a
single-item tool, and was successful in allowing him to
voice his concerns. Once James had voiced his prefer-
ence, the MDTwas able to arrange for him to stay in the
hospice and James’ anxiety, restlessness and agitation
4 Combes S. End Life J 2016;6:e000026. doi:10.1136/eoljnl-2016-000026
decreased along with his reports of pain and its severity.
James’ decision to remain in the hospice for terminal
care was supported by his family, and he died in the
ward with his family around him less than a week later.
MANAGEMENT OF ANXIETY STATES
Anxiety is prevalent in palliative patients (Wilson et al
2007, Mitchell et al 2011) but it is not inevitable;
even in those who are nearing the end of life, it can
be managed to improve symptoms (Fink et al 2015).
To do that, a holistic and often a multidisciplinary
management plan is required that takes into account
the reasons for the anxiety, which may be multifaceted
as noted above, patient’s prognosis, and their willing-
ness to accept help (Pasacreta et al 2006). Plans may
include elements of managing information to ensure
patients know what is happening and when, talking
through their worries, relaxation sessions, music
therapy, cognitive–behavioural therapy or pharmaco-
logical interventions such as lorazepam, a short-acting
benzodiazepine (Lloyd-Williams and Hughes 2008).
More complex mood disorders, such as total pain,
may also include patients speaking with other
members of the MDT, such as social workers, chap-
laincy or psychiatrists, and may involve whole family
counselling. In disorders such as terminal agitation, if
all remediable causes, such as urinary retention or
nicotine withdrawal, have been assessed and managed
appropriately but symptoms still persist, sedation—
such as midazolam—may be required either intermit-
tently or through a syringe driver (Furst and Doyle
2004, Heidrich and English 2015).
CONCLUSION
Anxiety is a core concern of palliative patients, par-
ticularly those nearing the end of life, and is prevalent
in this patient group. However, robust holistic assess-
ment, excellent interpersonal skills, and working as
part of the MDT can lead to many of its symptoms
being managed and an improved quality of life.
Robust, valid, and reliable assessment tools are recom-
mended for clinical practice as these aid in consistency
in assessment decision-making. In particular, single-
item screening tools are recommended as these may
be more appropriate when working with terminally ill
patients within the hospice environment. Practitioners
should also remember that holism in palliative care,
both in assessment and management, is vital and
while assessment tools are beneficial in clinical prac-
tice, the desire of practitioners to ensure a holistic,
palliative approach is also significant.
Competing interests None declared.
Provenance and peer review Not commissioned; externally
peer reviewed.
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Nursing assessment of anxiety and mood

disturbance in a palliative patient

Sarah Combes

End Life J 2016 6:

doi: 10.1136/eoljnl-2016-000026

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