Palliative care is the care of any patient with advanced, incurable disease. It involves the control of symptoms, such as pain, and aims to improve quality of life for both patients and their families. This article specifically examines palliative care for cancer patients
Palliative care aims to provide relief from suffering and improve the quality of life of both patients and their families. Palliative care takes a holistic approach which acknowledges that suffering is more than physical distress and recognises that patients require a combination of physical, psychological, social and spiritual care.
| Panel 1: WHO definition | |
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A definition of palliative care is given in Panel 1.
Palliative care is the care of any patient with advanced, incurable disease.
At present, co-ordinated palliative care is usually only available to patients
with cancer and neurological diseases. However, there is evidence supporting
the need for palliative care to be provided for patients with advanced cardiac
and respiratory disease.1,2 The scope
of this article is limited to palliative care for cancer patients although the
general principles can be applied to other patient groups.
A large part of physical care involves symptom control, which is one of the
cornerstones of palliative care. Most symptoms are controlled, at least in part,
by the use of medication. Patients with cancer often have multiple symptoms,
even at diagnosis.3,4 The medication
regimens necessary to palliate these symptoms, and the associated pharmaceutical
care, can become complex so a systematic approach is necessary. This will include
recognition of the presence of symptoms, clear records of current medication,
anticipation of unwanted effects of medication, and the degree of the patient’s
understanding of treatment goals. Monitoring for side effects and the patient’s
ability to take prescribed formulations is central to the provision of pharmaceutical
care. Confirmation of adequate symptom control and the prompt review of medicine
use to identify therapeutic failures are necessary to ensure treatment success.
This field of care gives pharmacists many opportunities to contribute to pharmaceutical
care within the multidisciplinary team.
Public health issues of palliative care
One in three of the population will develop cancer during their lifetime.6 Of
the 250,000 new cases of cancer reported in the UK in 1995, two-thirds were
in people over 65 years of age. It is predicted that as cancer is a disease
predominantly of the elderly, the number of people with cancer will rise as
the population ages. In 1996, there were 150,000 deaths from cancer which accounted
for 25 per cent of all deaths. Although there are over 200 different forms of
cancer, half of all new cases are lung (17 per cent), breast (14 per cent),
colorectal (13 per cent) and prostate (8 per cent). The same four solid tumours
are responsible for half of all cancer deaths: lung (23 per cent), colorectal
(11 per cent), breast (9 per cent) and prostate cancer (6 per cent). Half the
cancer deaths in men are because of three cancers (lung, prostate and large
bowel), and 40 per cent of cancer deaths in women are from lung, breast and
large bowel cancer.
| Panel 2: Profile of palliative care of cancer patients in the population of a pharmacy serving 5,000 patients 6-8 | |
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The profile of the population of an average community pharmacy, which would serve 125 patients living with a diagnosis of cancer, is illustrated in Panel 2. A proportion of this group of patients will be receiving active treatment, some will have completed active treatment and approximately 10 per cent will be approaching death. Each group has symptoms that require treatment.
Provision of palliative care
Patients expect health care professionals to concentrate on their ongoing symptom
control and not their eventual death.9 Terminal care is an integral part of
palliative care and is given during the last few days or hours of life. However,
many patients have symptoms at the point of cancer diagnosis3 and palliative
care should be provided from then and not confined to the phase of disease progression
leading to death.5
Family and friends are often intimately involved in patient care, sometimes
at the expense of their own health.7 In one study, relatives
were identified as the principal carers for over 80 per cent of those needing
care at home7 and 6 per cent of patients relied on friends
and neighbours. It has been shown that poor care prior to death makes bereavement
difficult and has long-term repercussions on the health of family and friends.10
Care for patients’ families and friends after death is an integral part
of palliative care.
Over 90 per cent of patients with cancer spend most of their last year of life
at home and over 90 per cent of those patients are admitted overnight to hospital
at least once during this time.7
Both primary and secondary care teams deliver
basic palliative care to patients.11 Interventions such
as radiotherapy, anaesthetic nerve blocks and specialist palliative care are
accessed via primary and secondary care teams. Familiarity with the services
that specialists provide, and how these services are accessed, is essential
for the optimisation of patients’ care.
Specialist palliative care is delivered by hospital palliative care teams, specialist
palliative care units within hospitals and hospices, and home care teams within
primary care. These teams can either provide all the care required for a patient
or supplement on-going care. The addition of specialist care to the primary
and secondary care teams means that the care of each patient often involves
a complex network of doctors, nurses and other health care professionals.12
Given the numbers and range of health care professionals with whom patients
have contact, it is important that services are not perceived to be disorganised,
or seemingly only reacting to crises rather than following predetermined plans.13
The respective responsibilities of each team and individual must be clear to
the patient, family and carers to prevent the potential confusion that can exist
about the roles of health care professionals. There is a clear need for good
documentation of care, including the patient’s pharmaceutical care, which
should be shared by the various health care workers to secure continuity of
care. Patient-held records, including records of prescribed medication, are
being developed at present.14 Effective use of such records
requires each member of the health care team to take responsibility for documenting
delivery of care.
Symptom prevalence
The 10 most common symptoms in patients with advanced cancer have been found
to be pain, fatigue, weakness, anorexia, weight loss, lack of energy, dry mouth,
constipation, dyspnoea and early satiety.15 (Pain, fatigue
and anorexia were consistently among the 10 most prevalent and clinically important
symptoms in all cancers.) Along with anxiety, these common symptoms make up
the most clinically important problems in the palliative care of cancer patients.
| Table 1: Prevalence of symptoms in cancer patient populations15-18 | ||||||||||||||||||||||
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The reported prevalence of symptoms in cancer patients is given in Table 1.
Patients rarely suffer only one symptom and most patients with advanced cancer
are polysymptomatic. At one pain clinic, patients with cancer had a median of
3.5 symptoms (range one to 10).3 In
another study, the median number of symptoms experienced by patients referred
to a palliative care service was six (range of one to 25).4
These findings have been confirmed by similar studies.16
As disease progresses, the number and severity of symptoms generally increases.16
The relatively large number of symptoms seen by specialist palliative care services
probably reflects the advanced disease stage of patients when referred.
With the exception of constipation, insomnia and confusion, which tend to appear
universally in cancer,17 tumour growth causes different
symptoms depending on the primary cancer site.3 Dysphagia
is observed comparatively more frequently in cancer of the head and neck region;
dyspnoea in cancer of the respiratory system, breast and other organs within
the chest cavity; and anorexia, vomiting and urinary symptoms are most commonly
observed in cancers of the gastrointestinal tract or genitourinary system.17
In prostate cancer, pain, which is often severe, is the single common symptom
that is prevalent.15,17
During the last days of life, symptoms such as pain, nausea, vomiting and constipation
change little in prevalence but additional symptoms may appear. In the last
weeks, fever, dyspnoea, anorexia, delirium/confusion and weight loss become
more prevalent.18,19 By this stage,
almost no patients are symptom-free and the percentage who are completely mentally
incapacitated rises from about 1 per cent to 12 per cent.18
The most frequent symptoms in the last 48 hours are anorexia, asthenia (loss
of strength), dry mouth, confusion, constipation, breathlessness and pain.18,19
Symptom control
Effective control of symptoms is vital to reduce suffering; in one study, 72
per cent of patients had at least a moderate reduction in their activity levels
caused by the presence of symptoms.3 The control of symptoms,
such as anxiety, depression, pain and dyspnoea, positively affects patients’
will to live20 as well as their ability to function normally.17
Drug treatment plays a major role in symptom control in palliative care.21,22
However, some symptoms require other treatment modalities to be used alongside
drug therapy. The treatment of dyspnoea, for example, usually includes non-drug
measures such as breathing control techniques.23 Pain can
be difficult to control when anxiety and depression are present, and effective
symptom control may require psychological problems and spiritual needs to be
addressed.24
Effective control of a particular symptom relies on its accurate assessment
— the symptom’s severity, precipitating factors and underlying causes.
If possible, reversible, underlying causes should be treated; for example, a
patient with a chest infection which exacerbates dyspnoea should receive an
appropriate antibiotic. The presence and severity of symptoms can change as
a patient’s disease progresses or as treatments, such as surgery or radiotherapy,
are administered.16 These changes dictate the need for
regular symptom assessment. Monitoring treatment regularly and consistently
is essential to ensure benefit and to avoid harm. Predictable side effects of
treatment must be anticipated and may often require the use of prophylactic
medication.25
The acceptability of treatments varies from patient to patient, depending on
their priorities. For instance, driving a car may be important to a patient’s
quality of life and medication which affects their ability to drive safely may
be unacceptable. An individual’s priorities may also change with disease
progression. For instance, bone pain may eventually lead a patient with a history
of peptic ulcer disease to accept the risk associated with a non-steroidal anti-inflammatory
drug (with concurrent gastro-protection) for the benefit of improved mobility.
Evidence base for treatment of symptoms There are few randomised,
controlled clinical trials of symptomatic treatments in advanced disease.26
Difficulties in recruitment, high attrition rates, problems with obtaining consent
to randomisation, in data collection and timing of the outcome assessment are
barriers to conducting randomised, controlled trials in palliative care.26 These
factors also limit the design and interpretation of findings in the trials which
are undertaken. The use of placebo treatments in controlled trials for the treatment
of symptoms such as pain is often unethical.
The Scottish Intercollegiate Guidelines Network (SIGN) has published a review
of evidence to support guidelines for the treatment of chronic pain in patients
with cancer.27 Shared physiological pathways of non-malignant
and malignant pain allow data from the Cochrane database, and a meta-analysis
by McQuay and Moore,28 on the treatment of non-malignant
chronic pain to be extrapolated to patients with cancer.
A summary of the evidence for treatment of chronic pain is given in Table 2.
| Table 2: Evidence base for drug treatment of chronic pain in patients
with cancer |
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No systematic reviews of the management of other symptoms have been published.
In fact, there is little published evidence of what constitutes best practice
for the control of most symptoms, although there is consensus throughout Europe
for some symptoms.29
Pain Pain is suffered by 50-70 per cent of patients with cancer
and is the most feared symptom.44 
The
WHO analgesic ladder (Figure 1) is a validated system for treating chronic cancer
pain and achieves satisfactory pain relief in up to 88 per cent of patients.5,22
Inadequate pain assessment has been shown to be a barrier to the effective management
of cancer pain.45 Pain can be described as “what the
experiencing person says it is, existing wherever he says it does.”46
Patients themselves should describe their pain as part of the assessment process
because there is evidence that pain scores given by carers (professional and
non-professional) can vary significantly from patient scores.47,48
It is important to recognise that 80 per cent of patients have more than one
pain49 and 20 per cent may have four or more pains. Information
on the nature and severity of each pain, along with factors that precipitate
and alleviate the pain, must be obtained.50 Using the results
from this assessment, the patient is started on the step of the treatment ladder
that is most appropriate for the severity of their pain.
| Panel 3: Definition of pain | |
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Response to primary analgesics (non-opioids and opioids) cannot be predicted by the nature of the pain,51 although certain types of pain, such as neuropathic pain, may require titration to higher doses, evoking more severe side effects.52 Moderate to severe pain in cancer, whatever the aetiology, usually responds at least partially to opioids.32 Treatment with primary analgesics should be optimised for each patient.
| Table 3: Use of adjuvant analgesics to treat specific pain syndromes |
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The use of adjuvant analgesics is indicated when the patient has particular
pain syndromes such as bone pain41 or neuropathic pain28
(Table 3). This is particularly useful when primary analgesics have a limited
effect.
Anticipating and controlling the side effects of analgesics is an important
part of optimising therapy. Constipation, nausea, vomiting, sedation and dry
mouth are classic side effects of opioids and all are observed more frequently
in patients taking opioids for moderate to severe pain than in patients not
taking strong opioids.3 Where effective prophylactic treatment
is given36 there can be a marked reduction in side effects,
despite increasing doses of opioids. Patients can be reassured that sedation
should decrease 24 to 48 hours after starting a strong opioid and after each
increase in dose. Tolerance to nausea usually occurs within five to 10 days
of starting an opioid for moderate to severe pain, and patients should have
an antiemetic to take during this period if nausea is a problem. After the initiation
period, antiemetics should not be necessary. All patients receiving opioids
should receive prophylactic laxatives and advice on mouth care.
Toxicity can occur in patients using opioids for pain relief.53
The signs of toxicity are manifest when the dose of opioid is too high for the
individual patient and vary from subtle confusion/agitation, vivid dreams and
frank hallucinations to profound sedation followed by respiratory depression.
These symptoms usually occur when the dose has been increased too far or too
rapidly, and may be uncovered when the patient’s background pain level
has been reduced, commonly by non-drug treatments such as radiotherapy or surgery.
Alternatively, the drug or its active metabolites might have accumulated because
of changes in clearance, commonly caused by alterations in renal function as
a result of dehydration. A small number of patients are particularly sensitive
to individual opioids and may exhibit the signs of toxicity even at low doses.
The severity of the signs of toxicity affect the corrective measures required,
which may vary from a reduction in opioid dose54 to the
use of naloxone. Agitation and confusion respond to haloperidol.53
Patients who are overly sensitive to the effects of one opioid may obtain a
better response from an alternative opioid.55
Patients and health care professionals are sometimes deterred from effective
opioid use by concerns about addiction (in the form of psychological dependence)
and tolerance (because of a fear of loss of clinical effectiveness over time).
These concerns are obstacles to effective pain relief and are unfounded.56
While physical dependence is a general feature of the use of opioids in chronic
pain, psychological dependence is highly unlikely.57 There
is evidence that physical dependence does not occur in some patients.58
Tolerance is not a clinically significant feature of chronic cancer pain management59
where increases in dose are more often required as a result of a change in the
clinical condition of the patient. Social and psychological well-being is integral
to the achievement of satisfactory pain control. Social and psychological needs
may be important factors in the 10-15 per cent of patients whose pain apparently
resists conventional approaches to analgesia. These patients may be particularly
distressed and their care may have to focus on relieving anxiety and anguish.
Others may require chemotherapy, radiotherapy, bisphosphonates, epidural/intrathecal
infusions, coeliac plexus block, cordotomy, transcutaneous electrical nerve
stimulation (TENS), or relaxation therapy.
Cachexia and anorexia Cachexia is the term used to describe a
combination of anorexia (loss of appetite), progressive weight loss, weakness,
fatigue, malaise and loss of skeletal muscle and adipose tissue. Patients with
cachexia have a disturbed metabolic activity.60 The metabolic
changes seem to precede the onset of clinically apparent cachexia, indicating
that they are responsible for its subsequent development. Reported prevalence
of cachexia varies with primary tumour site: it occurs in 36 per cent of breast
cancer patients, 61 per cent of lung cancer patients and 85 per cent of gastric
cancer patients. Anorexia is common with most advanced cancers.
Patients with anorexia may also have dysphagia (difficulty in swallowing), abnormal
taste sensation, depression, shortness of breath, dry mouth or chronic nausea
as contributing factors to anorexia.61 Treatment of depression,
shortness of breath, dry mouth and nausea may improve calorific intake.
For most patients who continue to eat normally, administration of extra calories
in the form of enteral or parenteral nutrition does not reverse weight loss
associated with cachexia. These supplements do not alter survival or the nutritional
status of the patient and it is unclear whether they provide any symptomatic
benefits. Extra calories provided in this manner should not replace normal meals,
particularly because the social benefits of eating with others should be retained.
Such supplements are best reserved for patients who are not in the terminal
phase of their disease but have become unable to swallow.
The psychological effects of cachexia and anorexia can be severe for the patient,
their family and carers. Dietary advice and counselling on the need to tailor
nutrition to the patient’s wishes and the futility of intensive or invasive
nutrition are important.
At present the only effective treatment of cachexia is to administer corticosteroids
or progestogens. Corticosteroids such as dexamethasone (at doses of 4-8mg daily)
improve anorexia, weakness and feeling of well-being62
but do not improve nutritional status. Often the duration of response achieved
by using corticosteroids is limited to three to four weeks.61
For short-term therapy, treatment at these doses is well tolerated. A more prolonged
effect is achieved by using high doses of a progestogen, such as megestrol acetate
or medroxyprogesterone. These substantially increase appetite, calorific intake
and improve nutritional status.60 Megestrol acetate at doses of 480mg per day
or more has also been shown to improve patients’ sense of well-being and
to decrease fatigue.63 The effects of progestogens may
take some weeks to manifest and therefore their use in those with limited life
expectancy is inappropriate. They also cause oedema and have a risk of thrombotic
events that may further limit their use.62
Nausea and vomiting Nausea and vomiting are present in 15-45 per cent of patients
with advanced cancer. These symptoms are ranked by patients as highly distressing.64
Nausea and vomiting are more common in those under 65 years old, in women, and
in patients with stomach, gynaecological or breast cancer.21
| Table 4: Treatable causes of nausea and vomiting | ||||||||||||||||||
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There are many causes of nausea and vomiting in advanced cancer.29 Any reversible
causes, such as hypercalcaemia, raised intracranial pressure and constipation,
should be treated accordingly (see Table 4) while symptom control is sought
with the use of antiemetics.
Different causes of nausea and vomiting operate via different neurological pathways
and neurotransmitters.29 Pharmacological treatment should
therefore be based rationally on the likely cause and the pathways involved21
(Figure 2). Antiemetics may be specific to one pathway (narrow spectrum) or
may have an action on many pathways (broad spectrum). Broad-spectrum antiemetics
are associated with a high incidence of side effects which may make them less
acceptable to patients. A combination of antiemetics may be needed to control
nausea and vomiting.29
Patients who are vomiting or who have severe, constant nausea require drugs
for symptom control to be given by a non-oral route until the vomiting is controlled.65
When
control is achieved, it is important to convert back to the oral route, when
possible, to maintain the patient’s independence. Medication review should
be undertaken to ensure that nausea is not triggered by a specific drug formulation.
Patients can have problems with taste and difficulties with swallowing tablets.
Constipation Constipation is prevalent in advanced cancer (25
to 50 per cent of patients) because of loss of appetite and subsequent decreased
food and fluid intake, periods of immobility, drug treatments and disease involvement
in the gastrointestinal tract.66 Constipation can lead
to nausea and vomiting, abdominal pain or discomfort, distension, confusion
and disorientation.66 Chronically constipated patients
may present with overflow diarrhoea, which occurs when fluid that accumulates
behind a solid faecal mass seeps past.66
Prophylactic laxatives should be prescribed for all patients who receive medication
that causes constipation, such as opioids, tricyclic antidepressants and anticholinergics.
Patients prescribed an opioid for moderate to severe pain require both a stool
softening and a stimulant laxative.35 Rectal treatments
may be required for patients with faecal impaction.66 Hard
stools require treatment with a softening agent before purgatives are given.
Dyspnoea Dyspnoea is an unpleasant sensation of being unable
to breathe easily and causes anxiety in both patients and their carers.23
It is most common in patients with cancer of the lung but also occurs frequently
in those with disease in the chest cavity, such as cancer of the breast or oesophagus.
As death approaches, the prevalence of dyspnoea rises from 20-50 per cent to
65-80 per cent of patients and the condition increases in severity. Patients
often describe feelings of constant shortness of breath, exhaustion, tightness
of the chest, extreme fear of suffocation or drowning, and the need to gasp
or pant. Tachypnoea (rapid breathing) often accompanies dyspnoea. If panic and
anxiety are present, they lead to a central increase in the rate of breathing
which further increases the feeling of breathlessness and anxiety. A vicious
circle is started which is then hard to break.
The level of dyspnoea experienced is not predicted by normal tests of respiratory
function67 and these tests are not useful in assessing
the need for treatment or on-
going monitoring. The subjective nature of dyspnoea requires assessment based
on the patient’s description of their experience.
Patients often have several different underlying factors that lead to the development
of dyspnoea.68 Where appropriate, treatment of any underlying
cause, such as anaemia, infection or pulmonary embolus, should be undertaken
and some patients may benefit from specific anticancer treatment. There is evidence
that patients with no apparent lung disease can suffer breathlessness,18
probably as a result of respiratory muscle weakness because of severe cachexia.68
Therefore, the majority of patients will require symptomatic treatment based
on the clinical characteristics of their breathlessness. Patients with a history
of reversible airway disease, chronic obstructive pulmonary disease (COPD) or
symptoms of wheeze may benefit from regular bronchodilators. In one study, 50
per cent of patients had an element of bronchospasm to their dyspnoea.68
All patients may be given a trial of an oral steroid, either for an anti-inflammatory
effect or to reduce peri-tumour oedema, unless a contraindication exists. If
tachypnoea is also a central feature of the respiratory difficulties, opioids
are useful to decrease central respiratory drive. Smaller doses and dose increments
of opioids than those used for pain relief are titrated against subjective response.
Benzodiazepines are effective in low doses, particularly for patients whose
anxiety augments the dyspnoea, although benefit in patients with no apparent
anxiety can also occur, probably because of sedation and muscle relaxation.
Lorazepam 0.5-2mg given sublingually can be useful in acute attacks. If regular
treatment is required, diazepam 5mg daily is started and the dose slowly titrated
upwards to obtain the maximum response with minimum sedation.23
In a small number of patients, a 24-hour trial of continuous or intermittent
oxygen (up to 28 per cent) may improve symptoms. Oxygen has been shown to be
effective in reducing dyspnoea in patients who are hypoxic and dyspnoeic at
rest.69 The therapeutic value of oxygen therapy in other
groups of patients with dyspnoea is unclear.23 The use
of masks can lead to difficulties in talking and eating. The apparatus itself,
and the noise involved, may distance relatives. Patients often become dependent
on oxygen which limits their mobility and complicates home care. For these reasons
it is important only to give oxygen therapy if a clear benefit is demonstrated
by careful evaluation of the 24-hour trial.
Optimal control of dyspnoea is achieved when drug treatment is given in conjunction
with physiotherapy, counselling and the provision of practical aids for daily
living.23
Last days of life (terminal care) Up to one-third of patients
are conscious until they die while another third are unconscious for longer
than 24 hours before death.70 In the last days of life,
patients may become weaker and their level of consciousness may fall.18
Potential problems should be anticipated and response to changes must be rapid
to ensure the patient’s comfort is maintained. Treatment decisions should
be based on clinical findings rather than painful or uncomfortable investigations.
Communication, reassurance and support of the family are essential.
During this period of change it is important for the goals of treatment to be
redefined. The need for drug treatments, and the routes by which drugs are administered,
require regular review. Drugs such as antihypertensives, antidepressants, hypoglycaemics,
insulin, multivitamins and diuretics should be reviewed and may be reduced or
stopped when best for the patient.71
Dry mouth, confusion, dysphagia, paralysis and agitation become more common
in the last week of life. If treatment for symptoms is withdrawn, the subsequent
loss of symptom control can lead to further agitation in a semi-conscious or
unconscious patient. Drug withdrawal syndromes associated with antidepressants
and benzodiazepines can add to this agitation.
Confusion and agitation may also be caused by opioid toxicity, pain, dyspnoea,
pressure sores, distended bladder or constipation and may be brought on by anxiety,
anguish, loneliness and the need for reassurance.71 Sedation
with short-acting benzodiazepines may help relieve agitation where it is not
possible to treat the underlying cause without major intervention. Confusion
is best treated with a neuroleptic such as haloperidol. Confused and agitated
patients may require a sedating neuroleptic such as levomepromazine (methotrimeprazine)
or a combination of haloperidol with a benzodiazepine.
The unnecessary introduction of artificial feeding (such as nasogastric [NG]
feeding), or intravenous fluids or nutrition should be avoided as the patient
deteriorates. Artificial feeding has no impact on survival or patient comfort
and is not appropriate in patients close to death. Inserting an NG tube or intravenous
cannula causes some discomfort and such administration equipment is an unnecessary
barrier between a patient and their family or carers.
A review of the literature gives conflicting reports of the physical discomfort
that may be attributed to dehydration in dying patients and it remains unproven
whether parenteral fluids offer symptomatic relief in this situation.72
Specialists agree that the priority is to prevent the symptoms associated with
dehydration, rather than trying to achieve homoeostasis. Hypodermoclysis, the
subcutaneous infusion of fluids, is a safe and effective technique for treating
dehydration.73 It is less invasive than intravenous therapy,
technically easier to carry out and, in palliation, is used in preference to
intravenous administration.
Individualised care
The aim of drug therapy is to control symptoms in order that quality of life can be improved. The drug regimen should not become an unbearable burden for patients and carers or provoke unacceptable side effects. As patients are often polysymptomatic and require several drugs to control all their symptoms, the balance of benefit and detriment can be difficult to achieve as the resulting polypharmacy increases the risks of side effects, drug interactions and non-compliance.
| Table 5: Pharmaceutical care in palliative care | |||||||||||||||||||||
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To obtain the correct balance the pharmacist can become involved in a number
of key activities (see Table 5).
As the patient’s condition is labile and the response to drug therapy is
variable, particularly in pain control, treatment must be tailored to their
individual response to therapy. Successful drug therapy in palliative care is
dependent on accurate, repeated assessment of the patient’s condition.
This allows systematic choice of therapy and enables the response to treatments
to be correctly assessed. Pharmacists need to liaise with other members of the
care team to ensure that symptom assessment is carried out at appropriate intervals.
A patient-held symptom checklist, linked to a simple severity scoring system,
such as the Edmonton Symptom Assessment System, can be useful in measuring the
effectiveness of interventions as well as in identifying interventions required.
This particular tool has been validated in both inpatient and outpatient populations.74
The use of such tools might also bring to light unreported symptoms, as patients
have been shown to volunteer only their most pressing problems. Care must be
taken to elicit information directly from patients because assessments given
by carers, including close family, do not always accurately reflect those given
by patients.47,75 While carers can
identify the presence of physical symptoms,75 they do not
accurately report the severity or level of distress caused by these symptoms.76
Carers also tend to overestimate the anxiety or depression suffered by patients.75,76
It is important for community pharmacists to share information on symptom assessment
and response to treatment with other members of the care team.
The integration of pharmaceutical care into palliative care requires good documentation
of care and a system to share this information effectively among the health
care team(s). Sharing of information on the patient’s response to medication
can help to maintain optimised drug treatment. Improvements in symptoms that
indicate a successful response to treatment and the identification of therapeutic
failures should be recorded as part of the patient’s drug history. This
information should prevent repeated trials of drugs that have previously failed
to give the desired effect or have led to unacceptable side effects.
| Panel 4: Palliative care pharmacy transfer record | |
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Panel 4 summarises a data set for palliative care patients that might be included
in a pharmacy transfer record between any care settings.
Up to 60 per cent of palliative care patients at home are reported to be non-compliant
with their medication regimen.77 Factors that make patients
more likely to be non-compliant should be identified. In palliative care, the
most commonly occurring risk factors are presence or fear of side effects, lack
of monitoring, inadequate adjustment of therapy, practical difficulties in taking
medication, old age, depression and lack of understanding of the disease and
treatments.77,78,79
Patients with one or more risk factors require help to improve concordance and
compliance.
Where the presence or fear of side effects is an issue, this can be addressed
in a number of ways. Many of the side effects of drugs used for palliation of
symptoms can be anticipated and managed prophylactically.3,35
Side effects can also be minimised by avoiding the use of drugs with overlapping
side effect profiles. For example, the use of a tricyclic antidepressant with
an antiemetic such as cyclizine can lead to intolerable anticholinergic side
effects. Medication regimens should be reviewed regularly to identify such problems.
It is important that patients and carers are educated on common side effects
to avoid any misunderstandings or confusion surrounding occurrence of unwanted
effects.
Because of the high number of patients who develop nausea, vomiting or dysphagia,3,19
or who become too weak to take drugs orally,18 advice is often needed on how
to deliver the required drug regimen by alternative routes. For such patients
the necessary drugs and equipment are often required immediately in response
to rapid changes in the patient’s condition.80 Arrangements
must be in place in each health authority to ensure that these demands can be
met and that pharmacists are fully aware of such provisions.
There are particular risks associated with the use of Graseby MS26 and MS16A
portable infusion devices that are used to deliver subcutaneous infusions.81
The risks associated with mixing a number of drugs in a small volume can be
minimised by providing specialist advice on isotonicity and stability of medicines.
Many of the drugs delivered in this manner are unlicensed for subcutaneous infusion.
The frequent use of unlicensed medicines and the unlicensed use of existing
medicines82 in palliative care provide several care issues
for the pharmacist in terms of product availability, advice on use, formulation
and monitoring.
Ignorance and fear about symptomatic drug treatment is common in advanced cancer
patients.77 One-third of palliative care patients managing
their own medicines are in some way unclear about the purpose of their medication
or its correct use, and a small number will not take their medication because
they have no instructions on how to do so. Administration of medicines is seen
as a main task of caring for the patient by 78 per cent
of carers, yet as many as 90 per cent may not be given any written information
about the illness and its treatment.13 There is a clear
need for patient and carer education about the role and use of drug treatments.
People are more likely to follow a pharmacist’s advice if they are satisfied
with it.83 This can be achieved by adopting the right manner,
dedicating an appropriate amount of time, avoiding the exclusive use of closed
questions (ie, yes/no answers) and allowing the patient and carer to ask questions.13,84
Failure to remember or understand what they have been told is common and advice
needs to be reinforced. Carers have identified the value of repeating information
and they look for reassurance85 and reiteration of advice
given previously.13 Retention of information is improved
by providing information in several different formats.86
When providing education, it is important to know what has been said to the
recipient by other members of the care team so that confusion or doubts are
not introduced. Good liaison with the team is therefore necessary.
Many specialist palliative care units issue local treatment guidelines for symptom
control. The detail in these vary because of a dearth of good evidence from
randomised controlled trials. Instead, guidelines are often based on local clinical
experience. Implementation and dissemination of these provide a standard level
of care for palliative care patients. Clinical audit of the effect of local
protocols on symptom control is essential to ensure that prescribing is effective
and to allow improvements in practice. Most published literature on the involvement
of pharmacists in palliative care has been descriptive. In the one published
study where the impact of a pharmacist was assessed, 13 per cent of patients’
care was either improved clinically or made more cost-effective by pharmacist
intervention.87 There is a clear opportunity for practice
research in this area. Palliative care patients, particularly those at home,
present many pharmaceutical care issues. Ongoing monitoring and continuity of
pharmaceutical care are core issues because of disease progression and because
patients move regularly between care settings. Patients and carers require more
knowledge and practical support to manage their medicines effectively. Pharmacists
can contribute to each of these aspects of palliative care.
Ms Urie is palliative care pharmacist, North Glasgow NHS Trust and honorary lecturer, pharmaceutical care health service unit, department of pharmaceutical sciences, University of Strathclyde; Ms Fielding is principal pharmacist, Western General hospital, Edinburgh; Ms McArthur is principal pharmacist, Western General hospital, Edinburgh; Ms Kinnear is lecturer in clinical practice, pharmaceutical care health service unit, department of pharmaceutical sciences, University of Strathclyde; Professor Hudson is Boots professor of pharmaceutical care, pharmaceutical care health service unit, department of pharmaceutical sciences, University of Strathclyde, and Scottish Office national specialist in pharmaceutical care; Dr Fallon is senior lecturer in palliative medicine, Western General hospital, Edinburgh, and University of Edinburgh
A more fully referenced version of this article may be obtained by contacting the authors