3

Palliative medicine and symptom

control
Miriam J Johnson, Gail E Eva, Sara Booth

Introduction and general aspects 31

Symptom control 32
Pain 32
Gastrointestinal symptoms 34
Respiratory symptoms 35
Other physical symptoms 36
Psychosocial issues 36
Extending palliative care to people with non-malignant
disease 36
Heart failure 37
Chronic respiratory disease 37
Renal disease 38
Neurological disease 38
Palliative care of the frail elderly 39
Care of the dying 41

Introduction and General Aspects

Palliative care is the active total care of patients who have advanced,
progressive, life-shortening disease. It should be based on needs and not
diagnosis, and is required in non-malignant diseases as well as in cancer (Box
3.1).
  Box 3.1
Key components of a modern palliative care service
• Management based on needs, not diagnosis: the symptom burden of non-
malignant disease often equals that of cancer
• Care that is independent of the patient's location and that helps patients to
remain at home if possible, avoiding unwanted admissions to hospital
• Rehabilitation for people with advanced disease
• Support for carers
• Bereavement care for people with pathological grief problems
• Telephone advice for other clinicians; dissemination of palliative care
knowledge
• Teaching for clinicians, from undergraduate level to postgraduate life-long
learning

The goal of palliative care is to achieve the best possible quality of life for
patients and their carers by:
• managing physical, psychological, social and spiritual problems so as to
provide excellent symptom control
• enabling patients to be cared for and to die in the place of their choice
• enabling the acceptance of death as a normal process when life-prolonging
treatments no longer improve or maintain quality of life
• providing the opportunity to say goodbye and bring closure.

Who provides palliative care?

A hallmark of palliative care is the multiprofessional team, as single
professionals cannot provide the breadth of necessary expertise. The emotional
demands of working in this area require team support to enable balanced,
compassionate and professional care.
All healthcare providers should have basic palliative care skills and access to a
specialist palliative care (SPC) team. They should be aware of the services that
the local SPC teams can offer and recognize when referral is appropriate. A
problem-based approach to disease management will ensure that patients and
carers obtain access to appropriate support services, including SPC, and will
avoid an either/or approach (‘either curative treatment or palliative care’).
Good communication between members of the healthcare team, and between
patient and carer, underpins the successful management of advanced disease and
end-of-life care. Effective liaison between the hospital, primary care and hospice
is also essential.

When should palliative care needs be assessed – problems rather

than prognosis?
Early assessment of needs, with SPC referral if required, is crucial to achieving
the best outcome for rehabilitation and for maintaining or improving quality of
life for both patient and carer. Palliative care is most effective when it is included
as part of routine care as soon as possible after diagnosis, alongside disease-
specific therapy, such as radio/chemotherapy for cancer or cardiac medication
for heart failure. Early referral links palliative care with quality-of-life
improvements; positive associations increase the likelihood that patients and
families continue to use palliative care services when they need them over the
course of the illness. In cancer, there is good evidence that integrating palliative
care and anti-tumour treatment soon after diagnosis reduces long-term distress
and increases survival in selected cases.
If palliative care is seen only as relevant to the end-of-life phase, patients who
have non-malignant disease are denied expert help for complex symptoms.
Timely management of physical and psychosocial issues earlier in the course of
disease prevents intractable problems later (Box 3.2).

 Box 3.2
Problems arising when specialist palliative care
(SPC) is delayed until the end of life
• There is insufficient time to achieve good symptom control by combining
non-pharmacological and pharmacological components
• SPC services are deemed less acceptable by patient and family, being
associated with ‘dying’ or ‘giving up’ or ‘giving in’ to illness
• Psychological distress and physical symptoms become intractable and
contribute to complex grief
• It becomes too late to adopt a rehabilitative approach or teach/use non-
pharmacological interventions that need a degree of training and patient
 motivation (e.g. cognitive behavioural approaches, mindfulness meditation,
attendance at day therapy)

What are the patient's needs and what is the patient's

understanding?
The causes of a patient's symptoms are often multifactorial, and a holistic
assessment is central for optimum management. Assessment of the patient's
understanding of the disease, understanding their future wishes and
acknowledging their concerns, will help the team plan and implement effective
support. Patients will have differing needs for information, and will deal with
‘bad news’ in different ways. A sensitive approach, respecting individual
requirements, is crucial.

How can patients use palliative care services?

Changes in the provision of SPC services have been forced by the increase in the
number of patients who survive malignant disease, as well as recognition of the
needs of patients who have non-malignant disease. Many patients will use SPC
services for a limited period (weeks to months) for complex problems to be
addressed, and then are discharged. They have the opportunity for re-referral if
help is required later.

Further reading
Parilch RB, Kirch RA, Smith TJ et al. Early specialty palliative care. N Engl J
Med 2013; 369:2347–2351.
Zimmermann C, Swami N, Krzyzanowska M et al. Early palliative care for
patients with advanced cancer: a cluster-randomised controlled trial. Lancet
2014; 383:1721–1730.

Symptom Control
Good palliative care integrates the control of symptoms with appropriate non-
pharmacological approaches, such as anxiety management and rehabilitation
(see p. 36).

Pain
Pain (see also pp. 818–820) is a feared symptom in cancer. At least two-thirds of
people with cancer suffer significant pain. Pain has a number of causes, and not
all pains respond equally well to opioid analgesics (Fig. 3.1). The pain is related
to the tumour either directly (e.g. pressure on a nerve) or indirectly (e.g. due to
weight loss or pressure ulcers). It may result from a co-morbidity such as
arthritis. Emotional and spiritual distress may be expressed as physical pain
(termed ‘opioid irrelevant pain’) or will exacerbate physical pain.

FIGURE 3.1 Management of cancer pain.

The term ‘total pain’ encompasses a variety of influences that contribute to

pain:
• Biological: the cancer itself, cancer therapy (drugs, surgery, radiotherapy).
• Social: family distress, loss of independence, financial problems from job loss.
• Psychological: fear of dying, of pain, or of being in hospital; anger at dying or
at the process of diagnosis and delays. Depression can stem from all of the
above.
• Spiritual: fear of death, questions about life's meaning, guilt.
A visual analogue scale for pain can be used (Fig. 3.2).

FIGURE 3.2 Visual analogue scale for pain assessment. A verbal rating scale can also
be used: none, mild, moderate, severe.

The WHO analgesic ladder

Most cancer pain can be managed with oral or commonly used transdermal
preparations. The World Health Organization (WHO) cancer pain relief ladder
guides the choice of analgesic according to pain severity (Fig. 3.3, Box 3.3).
FIGURE 3.3 WHO analgesic ladder for cancer and other chronic pain. Step 2 can be
omitted, going to morphine immediately. Adjuvant drugs are listed in Box 3.3. *Opioids
 include all drugs with an action similar to that of morphine, i.e. binding to endogenous
opioid receptors. †Continue non-steroidal anti-inflammatory drug (NSAID)/paracetamol
regularly when opioid started.

 Box 3.3
Commonly used adjuvant analgesics

Drugs Indication
Non-steroidal anti-inflammatory drugs (NSAIDs), e.g. Bone pain, inflammatory pain
naproxen
Anticonvulsants, e.g. gabapentin (600–2400 mg daily) or Neuropathic pain
pregabalin (150 mg at start, increasing up to 600 mg
daily)
Tricyclic antidepressants, e.g. amitriptyline (10–75 mg Neuropathic pain
daily)
Bisphosphonates, e.g. disodium pamidronate, zoledronic Metastatic bone disease
acid
Dexamethasone Neuropathic pain, inflammatory pain (e.g. liver capsule
pain), headache from cerebral oedema due to brain
tumour

If regular use of optimum dosing (e.g. paracetamol 1 g × 4 daily for step 1)
does not control the pain, then an analgesic from the next step of the ladder is
prescribed. As pain has different physical aetiologies, an adjuvant analgesic may
be needed in addition: for example, the tricyclic antidepressant amitriptyline for
neuropathic pain (see Box 3.3).

Strong opioid drugs

Dose titration and route

Morphine is the drug of choice and, in most circumstances, should be given
regularly by mouth. The dose should be tailored to the individual's needs by
allowing ‘as required’ doses; morphine does not have a ‘ceiling’ effect. If a
patient has needed further doses in addition to the regular daily dose, then the
amount in the additional doses can be added to the following day's regular dose
until the daily requirement becomes stable: a process called ‘titration’. When the
stable daily dose requirement has been established, the morphine can be changed
to a sustained-release preparation. For example:
 20 mg morphine elixir 4-hourly
= 120 mg morphine per day
= 60 mg twice daily of a 12-hour preparation or
= 120 mg daily of a 24-hour preparation.
The starting dose of morphine is usually 5–10 mg every 4 hours, depending on
patient size, renal function and whether a weak opioid is already being given.
If there is significant renal dysfunction, morphine should be used in low doses
and should not be given in continuous dose regimens (e.g. by subcutaneous
infusions) because of the risk of metabolite accumulation (it is renally excreted).
In renal impairment, an alternative opioid (e.g. fentanyl) can be given
transdermally (e.g. 72-hour self-adhesive patches) or by subcutaneous infusion.
N.B. A word of caution about opioid transdermal patches: serum levels do not
change quickly with transdermal patches, and they are also cumbersome to
titrate in patients with escalating or unstable pain. They should be kept at a
stable dose, and a more dose-responsive preparation used to gain pain control.
If a patient is unable to take oral medication due to weakness, swallowing
difficulties, or nausea and vomiting, the opioid should be given parenterally. For
cancer patients who are likely to need continuous analgesia, continuous
subcutaneous infusion is the preferred route.
Both doctors and patients may have erroneous beliefs, such as the fear of
addiction, which mean that adequate doses of opioids are not prescribed or
taken. However, iatrogenic addiction is very rare, with the risk being <0.01%;
the adverse effects and morbidity from uncontrolled pain are much higher.

Side-effects
The most common side-effects are:
• Nausea and vomiting. These can usually be managed or prevented with
antiemetics (such as metoclopramide). Some antiemetic solutions for injection
can be combined with an opioid for continuous subcutaneous infusion, e.g.
haloperidol or metoclopramide; always check compatibility data.
• Constipation. This is common and should be anticipated with administration of
a combination of stool softener (e.g. macrogols) and stimulants, either
separately or in one preparation. Naltrexone is a peripherally acting opioid
receptor antagonist that is used if response to other laxatives is poor.
If side-effects are intractable, a change of opioid is often helpful.

Toxicity
Confusion, persistent and undue drowsiness, myoclonus, nightmares and
hallucinations indicate opioid toxicity. This may follow rapid dose escalation and
responds to dose reduction and slower retitration. It may indicate pain that is
poorly responsive to opioids and the need for adjuvant analgesics.
Antipsychotics such as haloperidol may help settle the patient's distress whilst
waiting for resolution of toxicity. Some patients will tolerate an alternative
opioid such as oxycodone better, or an alternative route such as subcutaneous
injection.

Adjuvant analgesics
The most commonly used adjuvant analgesics are described in Box 3.3. Other
treatments, such as radio/chemotherapy, anaesthetic or neurosurgical
interventions, acupuncture and transcutaneous electrical nerve stimulation
(TENS), may be useful in selected patients.
Regular review is necessary to achieve optimal pain control, including regular
assessment to distinguish pain severity from pain distress.

Further reading
Quigley C. Opioids in people with cancer-related pain. Clin Evid (Online)
2008; http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2907984/.
SIGN. Control of Pain in Adults with Cancer. Publication No. 106.
Edinburgh: SIGN; 2008; http://www.sign.ac.uk/pdf/SIGN106.pdf.

Gastrointestinal symptoms
Anorexia, weight loss, malaise and weakness
These result from the cancer-cachexia syndrome of advanced disease and carry a
poor prognosis. Although attention to nutrition is necessary, the syndrome is
mediated through chronic stimulation of the acute phase response, and tumour-
secreted substances (e.g. lipid mobilizing factor and proteolysis-inducing factor).
Thus, calorie–protein support alone gives limited benefit; parenteral feeding has
been shown to make no difference to patient survival or quality of life.
Management is supportive unless the patient is fit enough for and responds to
anti-tumour drugs. Specific therapies such as eicosapentaenoic acid (EPA), fish
oil, cyclo-oxygenase (COX) inhibition with non-steroidal anti-inflammatory
drugs (NSAIDs) and antioxidant treatments are used.
 Advice from a dietician is helpful. Some patients benefit from a trial of a food
supplement that contains EPA and antioxidants. Megestrol may help appetite but
weight gain is usually caused by fluid or fat. The drug is also thrombogenic and
is of little benefit and should therefore not be used.
Corticosteroids were recommended as appetite stimulants and are still
commonly used. However, the weight gained is usually caused by fluid, and
muscle catabolism is accelerated leading to a proximal myopathy. Any benefit in
appetite stimulation tends to be short-lived. Thus, corticosteroids should be
limited to short-term use only.

Nausea and vomiting

Nausea and vomiting are common, and often due to use of opioids without
antiemetics such as haloperidol 1.5 mg × 1–2 daily or metoclopramide 10–20
mg × 3 daily.
When nausea and vomiting are associated with:
• Chemotherapy. Patients should have an antiemetic, starting with
metoclopramide or domperidone, but if the risk of nausea and vomiting is high,
give a specific 5-hydroxytryptamine3 (5-HT3) antagonist, e.g. ondansetron 8 mg
orally or by slow i.v. injection.
• Chemical causes e.g. hypercalcaemia. Haloperidol 1.5–3 mg daily is the first
choice. Metoclopramide is also a prokinetic and therefore useful for emesis due
to gastric stasis or constipation. Cyclizine 50 mg × 3 daily is also used.
• Any cause of vomiting. It may be necessary to start antiemetic therapy
parenterally by continuous subcutaneous infusion to gain control. If the patient
has gastrointestinal obstruction, this route may need to be continued.

Gastric distension
Gastric distension due to pressure on the stomach by the tumour (squashed
stomach syndrome) is treated with a prokinetic: for example, domperidone 10
mg × 3 daily.

Bowel obstruction
Metoclopramide is helpful but to be avoided in complete bowel obstruction,
where an antispasmodic such as hyoscine butylbromide is preferred. A dose of
60–120 mg/24 hours s.c. is usually recommended, but much higher doses (300–
480 mg) may be needed as parenteral hyoscine butylbromide can be rapidly
inactivated in humans.
Octreotide (a somatostatin analogue) is commonly used in bowel obstruction
to try to reduce gut secretions and the volume of vomitus, but a recent
randomized controlled trial failed to show any benefit over placebo. Ranitidine
may have a role in reducing gastric secretions.
Physical measures, such as a defunctioning colostomy or a venting
gastrostomy, may be helpful. Occasionally, a lower bowel obstruction is resolved
with insertion of a stent, or transrectal resection of tumour in selected
individuals. Steroids shorten the length of episodes of obstruction, if resolution
is possible.
In advanced disease, patients should be encouraged to drink and take small
amounts of soft diet as they wish. With good mouth care, the sensation of thirst
is often avoidable, thus sometimes preventing the need for parenteral fluids
unless otherwise indicated.

Further reading
Clark K, Lam L, Currow D. Reducing gastric secretions – a role for histamine
2 antagonists or proton pump inhibitors in malignant bowel obstruction?
Support Care Cancer 2009; 17:1463–1468.
Currow D et al. A randomized double blind placebo controlled trial of
infusional subcutaneous octreotide in the management of malignant bowel
obstruction in people with advanced cancer. Abstract OA25. Palliat Med
2012; 26:403.
Currow DC, Quinn S, Agar M et al. Double-blind, placebo-controlled,
randomized trial of octreotide in malignant bowel obstruction. J Pain
Symptom Manage 2015; 49:814–821.
van der Meij BS, Langius JA, Smit EF et al. Oral nutritional supplements
containing (n-3) polyunsaturated fatty acids affect the nutritional status of
patients with stage III non-small cell lung cancer during multimodality
treatment. J Nutr 2010; 140:1774–1780.

Respiratory symptoms
Breathlessness
Breathlessness remains one of the most distressing and common symptoms in
palliative care, causing the patient serious discomfort. It is highly distressing for
carers to witness. Full assessment and active treatment of all reversible
conditions, such as drainage of pleural effusions, or optimization of treatment of
heart failure or chronic pulmonary disease is mandatory. In advanced cancer,
breathlessness is often multifactorial in origin and many of the contributory
factors are irreversible (e.g. cachexia), so a ‘complex intervention’ combining a
number of different treatment strategies has the greatest impact. Aspects of
breathlessness management are summarized in Box 3.4. Intractable severe
breathlessness in a patient who is dying may require sedation in order to provide
comfort but more invasive interventions are usually avoided. Non-invasive
ventilation (NIV) has been shown to alleviate distressing dyspnoea and is also
associated with a reduced opioid requirement; this may be helpful in selected
patients.

 Box 3.4
Key points for successful management of
breathlessness
• Start treatment early. Patients who are likely to develop breathlessness
should learn non-pharmacological approaches early in the disease course,
before breathlessness has become severe.
• Involve the carer in the treatment strategy. Watching breathlessness
episodes and being unable to help is a terrifying experience (and promotes
the panic–anxiety cycle); if patients and carers develop a joint ritual for
crises, chronic anxiety can be reduced.
• Ensure management is rehabilitative (see p. 36). This increases physical
fitness, hope and self-efficacy, and may enable patient and carer to achieve
goals that once seemed impossible.
• Integrate psychological, physical and social interventions. These are
important, as with all palliative care.

Breathlessness with panic and anxiety

Patients often experience a panic–breathlessness cycle and fear dying during an
acute episode of breathlessness. This is unlikely in chronic disease, unless there
is an acute complication, and reassurance will help. The perception of
breathlessness is mediated by the central nervous system and can be modulated
by thoughts and feelings about the sensation. Education about breathlessness and
exploration of psychological precipitators or maintainers can reduce its impact.

Measures to alleviate breathlessness

Non-pharmacological approaches, such as using a hand-held fan, pacing or
prioritizing activities to maximize activity within limitations, breathing training
and anxiety management, are helpful, along with a tailored exercise programme
(Box 3.5). There is no evidence to suggest that oxygen therapy reduces the
sensation of breathlessness in advanced disease more than just cool airflow. A
hand-held fan should be used before oxygen, unless the latter is indicated by
significant hypoxaemia or disease management. Opioids, used orally or
parenterally, can palliate breathlessness. If panic/anxiety is significant, a quick-
acting benzodiazepine such as lorazepam (used sublingually for rapid
absorption) is useful.

 Box 3.5
Key non-pharmacological interventions for
breathlessness

Intervention Putative mechanism of action Most useful

Hand-held fan
Exercise
Anxiety reduction, e.g. CBT
(needs skilled clinician to
administer) or simple
relaxation therapy
Carer support
Cools area served by second and third
branches of trigeminal nerve
Reduces temperature of air flowing over nasal
receptors, altering signal to brainstem
respiratory complex and so changing
respiratory pattern
Stops spiral of disability developing
Changes muscle structure: less lactic acid
produced
Works on central perception of breathlessness,
reducing impact
Interrupts panic–anxiety cycle
Reduces carer anxiety and distress, which are
part of ‘total’ anxiety–panic cycle
For reducing length of episodes of
SOB on exertion or at rest
For giving patient and carer
confidence by having an
intervention they can use
In patients who are still quite
mobile
In patients who have not developed
onset of SOB,
lessening/deferring symptoms
by reducing deconditioning
In people with higher levels of
anxiety at baseline (i.e. when
first seen)
In patients willing to persevere with
learning a new skill
Where carer is isolated, under extra
pressures (e.g. looking after
elderly parent, going through
divorce)
 Breathing retraining
Pacing (finding a balance
between activity and rest,
and prioritizing daily
activities)
Neuromuscular electrical
stimulation
CBT, cognitive behavioural therapy; SOB, shortness of breath (breathlessness).
Improves mechanical effectiveness of
respiratory system
Avoids over-exertion, which can lead to
exhaustion, inactivity and subsequent
deconditioning
Increases muscle bulk, simulating effect of
exercise
For chronic advanced respiratory
disease and in those with
anxiety-related breathlessness
In patients who are able and willing
to modify daily routines
In patients who:
live alone
are unable to attend a rehabilitation
group
have a short prognosis
have co-morbidities that prevent
exercise

Cough
Persistent unproductive cough can be helped by the antitussive effect of opioids
(e.g. morphine). Excessive respiratory secretions can be treated with hyoscine
hydrobromide 400–600 µg every 4–8 hours but does give a dry mouth.
Glycopyrronium is also useful by subcutaneous infusion of 0.6–1.2 mg in 24
hours.

Further reading
Nava S, Ferrer M, Esquinas A et al. Palliative use of non-invasive ventilation
in end-of-life patients with solid tumours: a randomised feasibility trial.
Lancet Oncol 2013; 14:219–227.
Parshall MB, Schwartzstein RM, Adams L et al. An official American
Thoracic Society statement: update on the mechanisms, assessment, and
management of dyspnea. Am J Respir Crit Care Med 2012; 185:435–452.
http://www.cuh.org.uk/breathlessness More on interventions for
breathlessness.

Other physical symptoms

People with cancer may develop other physical symptoms caused by the tumour
directly (e.g. hemiplegia due to brain secondaries) or indirectly (e.g. bleeding or
venous thromboembolism due to disturbances in coagulation). Symptoms may
also result from treatment, such as lymphoedema following treatment for breast
or vulval cancer, or heart failure secondary to anthracycline or trastuzumab
therapy. The principles of holistic assessment, reversal of reversible factors and
appropriate involvement of the multiprofessional team should be applied.

Lymphoedema
The pain and disabling swelling associated with lymphoedema can be alleviated
through complete decongestive therapy (CDT), a treatment that employs a
massage-like technique and comprises manual lymphatic drainage, compression
bandaging and gentle exercise. Diuretics should not be used. Referral to a
specialist lymphoedema therapist or nurse is useful.

Fatigue
Fatigue is a significant and debilitating problem for palliative patients. It has
physical, cognitive and affective components; unlike normal tiredness, it is not
relieved by usual sleep or rest. An assessment for reversible contributory factors,
such as anaemia, hypokalaemia or over-sedation due to poorly optimized
medication, should be undertaken. Management strategies are:
• non-pharmacological: relaxation, sleep hygiene, resting ‘pro-actively’ rather
than collapsing when exhausted, and planning, pacing and prioritizing daily
activities
• pharmacological: low-dose methylphenidate (central nervous system
stimulant), or short-term corticosteroids used in conjunction with the SPC team,
may help.

Loss of function, disability and rehabilitation

Some of the most pressing concerns include increasing physical frailty, loss of
independence, and perceived burden on others. Evidence suggests that functional
problems are not routinely assessed, and not as well managed as pain and other
symptoms. Rehabilitation can:
• contribute to patients' quality of life by providing strategies for managing
declining physical function and fatigue, and by offering resources that might
make life easier for patients and carers (e.g. equipment or a wheelchair)
• support patients' adaptation to disability, helping them to increase social
participation and find fulfilment in everyday living
• minimize carer stress and distress.
A referral to physiotherapy or occupational therapy is helpful for patients
whose ability to carry out daily activities is compromised by illness or its
treatment. However, it must be remembered that effective rehabilitation is a team
effort and is not solely the domain of nursing and allied health professionals.
Doctors also have a major role to play in attending to functional problems and
fatigue; they should not see these as inevitable, unavoidable and insoluble.
There is a need to take into account changing performance status as well as
changes in goals and priorities. It can be helpful to identify short-term,
achievable goals and focus on these. Most patients wish to remain at home for as
long as possible and to die at home, given adequate support. Patients' community
rehabilitation needs should not be neglected.

Psychosocial issues
Depression is a common feature of life-limiting and disabling illness, and is
often missed or dismissed as ‘understandable’. However, it may well respond to
the usual antidepressant drugs and/or to non-pharmacological measures such as
cognitive behavioural therapy, increased social support (e.g. day therapy) and
support for family relationships. Such interventions can make a big difference to
the patient's quality of life and ability to cope with the situation.

Further reading
Hudson PL, Remedios C, Thomas K. A systematic review of psychosocial
interventions for family carers of palliative care patients. BMC Palliat Care
2010; 9:17.

Extending Palliative Care to People with Non-

Malignant Disease
The principles of palliative care can be applied throughout medical practice so
that all patients, irrespective of care setting (home, hospital or hospice), receive
appropriate care from the staff looking after them and have access to SPC
services for complex issues. Some principles are outlined in Box 3.6. Patients
who have chronic non-malignant disease, such as organ failures (heart, lung and
kidney), degenerative neurological disease and human immuno​deficiency virus
(HIV) infection:
• have a similar or greater symptom burden than people with cancer
• may live longer with these difficulties
• benefit from a palliative care approach with access to SPC for complex
problems.

 Box 3.6
Key points in palliative care
• Patients should always be involved in decisions about their care.
• Quality of life is increased when treatment goals are clearly understood by
everyone, including patient and carer.
• The multidisciplinary team provide a high standard of care but there must be
realism and honesty about what can be achieved.
• End-of-life care is often delivered in hospices or the home.
• Care at home should be encouraged for as long as possible, even if the
patient's preferred place of death is elsewhere.
• Discussions about end-of-life care planning are best held outside times of
crisis, with clinicians with whom the patient has a good relationship.
Discussions must be recorded and made known to everyone involved in the
patient's care.

There may be a less clear end-stage of disease but the principles of symptom
control are the same: holistic assessment, reversal of reversible factors and
multiprofessional support.
Patients who have non-malignant disease may have very close relationships
with their usual team, and an integrated approach is essential to allow
optimization of disease-directed medication as well as palliation. People with
non-malignant disease may live for years with a difficult illness and so their
palliative care needs to differ in some respects from that of cancer patients (Box
3.7). However, symptom management is largely transferable, with some
exceptions and extra complexities as outlined below.

 Box 3.7
Differences between palliative care for people with
malignant and non-malignant diseases
 Cancer Non-malignant disease

Standard treatment regimens, Advanced disease often needs bespoke pharmacological interventions, which may
even in advanced disease interact with palliative drugs. Close teamwork is essential to avoid adversely
affecting outcomes, e.g. in use of opioids and many other drugs
Relatively new diagnosis (weeks Usually many years of illness with loss of social networks, employment and
to months) practical support
Sudden death is rare (although it Sudden death is relatively frequent as a result of cardiovascular/diabetic
can happen, e.g. pulmonary complications (e.g. in chronic kidney disease)
embolus, neutropenic sepsis)
Cancer and associated problems Co-morbidities due to disease or treatment often cause most problems and shape
are the main morbidities end-of-life care
Prognosis is usually predictable Prognosis difficult to determine: patients with many ‘near-death experiences’ and
admissions can recover
Support from SPC services is Main support may be from a medical unit, e.g. dialysis unit
often started early in the
disease course
Standard hospice services (e.g. Standard hospice service may not be offered (clinician ignorance) or may not be
day therapy) often suit feasible (e.g. for dialysis patient attending hospital 3 days a week)
treatment patterns well

Throughout the course of the illness, careful open discussion of possible

future options is essential. Early discussion of difficult choices is as helpful for
patients who have non-malignant disease as it is for those with cancer, and these
discussions are ideally held when the patient is relatively well and outside an
acute episode. Discussions delayed until the crisis of acute admission may lead
to acceptance of an invasive treatment that is later regretted by the patient.

Heart failure
There are special considerations with respect to cardiac medication in advanced
disease:
• Drugs that are commonly used in palliative care but usually contraindicated in
heart failure, such as amitriptyline and NSAIDs, may be appropriate when the
patient is dying.
• Sudden death is more common than in patients who have malignancy and a
patient may have an implanted defibrillator in place. If present, these devices
should be reprogrammed to pacemaker mode in advanced disease because they
have not been shown to improve survival in severe heart failure and it will be
distressing for patient, carer and staff if the defibrillator discharges as the
patient is dying.
• Peripheral oedema can become a major problem and more resistant to diuretic
therapy; careful balancing of medication regimens is therefore required.
Ultimately, symptom relief is prioritized over renal function.
• Medications should be rationalized to reduce polypharmacy, e.g. ceasing drugs
prescribed to reduce long-term secondary risk (e.g. statins) and continuing
drugs that help symptom control (including angiotensin-converting enzyme
inhibitors, which benefit symptoms as well as survival). Beta-blockers may
have to be stopped if the patient can no longer maintain non-symptomatic
hypotension.
Regarding statins, a recent randomized trial of withdrawal versus continuation
of statin in those thought to be in the last year of life showed no detrimental
effect on quality of life with withdrawal.

Chronic respiratory disease

Chronic obstructive pulmonary disease (COPD)
COPD is the most common chronic respiratory disease. Patients may live
increasingly restricted lives for years, rather than the months or weeks that are
common once someone with cancer becomes breathless. Patients usually reach
late middle age or old age before becoming very disabled, and an elderly spouse
often has to carry significant physical burdens.
Because of the risk of dependency, falls and memory problems, non-
pharmacological approaches to anxiety are more appropriate than
benzodiazepines (see Box 3.5 ). Short-acting benzodiazepines should be reserved
for severe panic episodes.
Palliative care breathlessness services can be very helpful for those unable to
comply with pulmonary rehabilitation. Emergency admissions to hospital for
non-medical reasons are often due to anxiety and the support offered by
community palliative care services working with respiratory teams can help
prevent these.

Other chronic respiratory diseases

Other chronic respiratory illnesses that often require palliative care include:
• Idiopathic pulmonary fibrosis. This has a trajectory similar to that of cancer,
with rapidly developing breathlessness and cough. The breathlessness of
idiopathic pulmonary fibrosis is particularly frightening but may respond well
 to opioids; early access to hospice services is particularly relevant to help with
symptom control and anxiety.
• Cystic fibrosis. Patients are teenagers or young adults who usually have known
their respiratory team all their lives. An integrated team involving SPC
clinicians ensures good symptom control and provides useful support when
difficult decisions have to be made about treatments (e.g. lung transplant), as
well as offering psychosocial care to the family.
• Primary pulmonary hypertension. Patients are often young and treated far
from home in specialist centres. They require symptom control in close
consultation with the medical team, and it is essential for any dependent
children to receive the care they need.

Ventilatory support (see pp. 1163–1167)

For many patients who have respiratory failure, non-invasive ventilation (NIV)
has superseded the use of intermittent positive pressure ventilation (IPPV) on
intensive therapy units. However, there are patients who are likely to need IPPV
during admission for an acute exacerbation. For some of this group, life has
become burdensome, rendering the net benefit for this procedure less or
negligible. These patients should be put in contact with hospice services when
they are relatively stable (not during acute exacerbations), anticipating an
alternative place of admission in the event of subsequent deteriorating health.

Opioid titration in non-malignant respiratory disease

In non-malignant respiratory disease, opioid titration may need to follow a
different pattern from that used in malignant disease, in which many patients are
already on opioids for pain control before they develop breathlessness. Some
clinicians recommend a cautious approach for these chronically breathless
patients who have non-malignant disease, but the evidence indicates that those
with adequate renal function may safely be started on 5–10 mg modified release
morphine, given appropriate monitoring. Constipation can be a problem (see p.
34) but recently naloxegol (a pegylated derivative of the µ-opioid receptor
antagonist naloxone) has been shown to be helpful without reducing the
analgesic effect of opioids.

Further reading
Boland J, Martin J, Wells AU et al. Palliative care for people with non-
 malignant lung disease: summary of current evidence and future direction.
Palliat Med 2013; 27:811–816.
http://www.medpagetoday.com/MeetingCoverage/ASCO/46070 Stopping
statins in terminal illness.

Renal disease
All care for patients who have end-stage chronic kidney disease (CKD) is
directed towards maintenance or improvement of renal function. Prescribing is
complicated, particularly if patients are receiving dialysis. Care must be taken
not to cause renal damage inadvertently with potentially renotoxic medication,
and close liaison with the renal team is mandatory.
In patients who have CKD, co-morbidities such as cardiovascular disease,
diabetes or osteoporosis may cause greater problems than the renal disease.
Those with a fluctuant course of symptoms, such as the 25–33% who have
coexisting cardiac disease, bear disproportionately greater physical and
psychological burdens.

Patients who are on dialysis

Patients attend three times per week (and receive social support from this). Thus
additional attendance at a hospice day therapy service may be too tiring. If
further support from SPC services is needed, then outpatient clinics, community
support (for patient and/or carer) or even admission may be more suitable.

Withdrawal of dialysis
Withdrawal of dialysis is necessary if the effort of attendance becomes too great
when there is little improvement in quality of life and the impact of other co-
morbidities becomes intrusive.
If there is no residual renal function, survival after withdrawal of dialysis is
likely to be a few days at most. In contrast, patients who have some residual
function (usually those who have had dialysis for only a few weeks or months)
may live for months or even a year after withdrawal. Patients and carers need to
understand these differences in order to make informed choices.

Patients who are not on dialysis

Maximizing and preserving remaining renal function are critical considerations
in deciding which medications can or should be prescribed:
• Medication that accelerates loss of renal function may markedly reduce
survival in patients who can live on very little remaining renal function.
• The renal impact of both dose and drug choice must be taken into account. For
example, morphine and diamorphine metabolites accumulate in end-stage renal
dysfunction; thus strong opioids such as alfentanil or fentanyl should be used
instead.
Close liaison with the medical team is essential for drug prescribing.

Further reading
Kane PM, Vinen K, Murtagh FE. Palliative care for advanced renal disease: a
summary of the evidence and future direction. Palliat Med 2013; 27:817–821.

Neurological disease
People who suffer from chronic degenerative neurological diseases have a
considerable burden of palliative care needs, including:
• difficulties in swallowing (e.g. in motor neurone disease)
• loss of mental capacity – the ability to understand, weigh up, come to a
decision and communicate that decision.
Ideally, discussions regarding the patient's wishes should take place in
advance, if the patient is able to do this, so that these can be supported.

Motor neurone disease

Motor neurone disease is usually rapidly progressive, often requiring hospice
support. Percutaneous endoscopic gastrostomy (see p. 213) feeding may be
required. In addition, if ventilatory failure develops, nocturnal NIV may be
offered. Patients and their carers need to understand:
• why this treatment has been offered (to prevent hypercarbia and morning
headache and confusion)
• when this treatment will be withdrawn (when it is no longer helping to maintain
or improve quality of life in the face of advancing disease).
Patients need to be given a clear understanding of what alternative symptom
control will be offered at withdrawal.

Multiple sclerosis
Pain is often prominent in multiple sclerosis because of muscle spasm; patients
may become too disabled to attend outpatient clinics and then receive very little
surveillance. Hospice day therapy service, rehabilitation and support for the
family can make a huge impact on quality of life.

Dementia
Dementia-related palliative care needs arise in the context of neurological
conditions that:
• tend to occur in older people (Alzheimer's disease and multi-infarct dementia)
• also affect younger people (e.g. Parkinson's disease, multiple sclerosis,
Huntington's disease).
It is often difficult to ascertain whether these patients are in pain. An
assessment tool that assesses behavioural response to pain, such as the Abbey
and Doloplus, which uses vocalization (e.g. groaning), facial expression (e.g.
frowning), change in body language (fidgeting, rocking), behaviour change (e.g.
confusion, refusing to eat) and physical changes, can be useful.
Dementia poses special problems with respect to inpatient palliative care. For
example, in the UK, many hospice inpatient units will not accept mobile patients
who have dementia because the patient's safety cannot be guaranteed. However,
they will care for those at the end of life with other SPC needs – for example, a
distressed young family – or pain, and will often support other services by
providing advice on symptom control.

Further reading
Richfield EW, Jones EJ, Alty JE. Palliative care for Parkinson's disease: a
summary of the evidence and future directions. Palliat Med 2013; 27:805–
883.

Palliative Care of the Frail Elderly

People worldwide are living longer as diseases, both communicable and non-
communicable, are better managed. However, the palliative care needs of older
patients often go unrecognized and are therefore under-treated. The
physiological effects of ageing itself are compounded by co-morbidity,
polypharmacy and unhealthy lifestyles. These factors lead to a higher mortality
than expected, a heavy symptom burden and shortened life expectancy,
compared to those who remain in good health at the same advanced age.
Recognition of and attention to the care of these patients can improve outcomes
by encouraging carers to produce individual care plans for the elderly frail.
Frailty is an emerging syndrome in the elderly. It has many definitions but can
be thought of as a state of extreme vulnerability with ‘a progressive
physiological decline in multiple organ systems’. This leads to a marked loss of
function, loss of physiological reserve and an increased vulnerability to disease
and death. There are a number of physiological changes that are associated with
normal ageing (Box 3.8), as well as the cumulative impact of chosen or imposed
‘unhealthy’ ways of life and chronic pre-existing diseases. The proportion of
detrimental changes that can be prevented or ameliorated by different behaviour
earlier in life, or by supporting people to maintain healthy habits into older age,
is debatable. Box 3.9 shows the ‘five ways to well​being’, which, if practised
with other public health teaching on moderate alcohol intake, maintenance of a
healthy weight and rejection of smoking, would help to preserve health and
activity as life advances.

 Box 3.8
Normal physiological changes with ageing that show
great inter-individual variation

Physiological Possible changes in behaviour

Result Comments
change and outcomes

Reduction in Greater susceptibility to Greater incidence of and rapid, Sudden

activity of infection severe deterioration with confusion/deterioration in
immune relatively minor infections, elderly person commonly
system e.g. urinary tract infection caused by infection
Vaccination (e.g. against
influenza) of importance
in prevention
Changes in HPA Altered circadian rhythm Need for less sleep, with early Particularly evident in
axis wakening hypothalamus/hippocampu
function Neural cell impairment and s and limbic system,
compensatory gliosis at leading to reduced
many levels of HPA axis memory
Possible Difficulty managing complex Forgetfulness, difficulty in Some authorities suggest that
cognitive medication regimens, working out complex cognitive decline largely
decline understanding illness and problems results from modern
consequences lifestyle and illnesses
rather than being an
inevitable part of ageing
Admission to hospital can
 uncover/exacerbate
cognitive impairment
Reduction in Falls more common, which can Fear of going out, particularly Can be detected on physical
balance and lead to catastrophic global in winter or after dark, examination in modalities
coordination deterioration, e.g. need for which in turn can of vibration sense, balance
sheltered care or exacerbate social isolation, in central nervous system
complications of poor nutrition, lack of
immobility leading to death sunlight and deconditioning
Reduction in Higher incidence of Increased mortality in this Prevention by urging
body's hypothermia in winter and group during periods of behavioural change (e.g.
ability to heat stroke in summer extreme heat or cold use of heating) or staying
maintain indoors in heat or cold
homeostasis,
e.g. stable
body
temperature
Reduction in Reduced ability to be mobile Can exacerbate isolation and What proportion of muscle
muscle mass (which may become loneliness through fear of loss can be prevented by
entrenched into spiral of going out in case unable to greater exercise is
disability) complete activity uncertain but it is clear that
exercise is beneficial
Deterioration in Difficulty taking part in or Loss of confidence, reduction in Macular degeneration, and
five senses achieving some activities of social life other changes in sight
daily living and related to associated
participating fully in social morbidity (e.g. diabetes)
life Age-related hearing loss
multifactorial (mostly
related to changes in
middle ear)
Reduced Prolonged half-life of drugs May lead to effective E.g. prolonged half-life of
metabolic overdosage, or increase in sedatives can lead to falls
rate adverse effects of some and confusion
drugs
HPA axis, hypothalamic–pituitary–adrenal axis.

 Box 3.9
Five ways to wellbeing (New Economics Foundation)
Connect with people
• Help the older person to find ways to be in contact with other people to
avoid social isolation and loneliness. Evidence shows that we need both
depth and breadth in our relationships for optimum health at any age.
Be active
• Encourage physical activity that is enjoyable. Incorporate exercise into daily
 routines as much as possible. A slow walk to the toilet is better than a
commode by the bedside. Exercise facilitates the achievement of the other
ways to wellbeing and increases the likelihood of successful self-care, as
well as being of key importance for maintaining and improving the health of
cardiovascular and musculoskeletal systems.
Take notice
• Facilitate the older person's interest in current affairs and local news, as well
as their immediate surroundings. Meditation and/or relaxation techniques to
manage anxiety are of value at any age and help people to live in the present
moment rather than being disabled by past fears and worries or anxiety
about the future. They can be taught in hospital by occupational
therapists/physiotherapists, psychologists and some specialist nurses and
physicians, and education can be maintained on discharge by community
resources.
Keep learning
• Encourage the older person to try something new. There is accumulating
evidence that continuing to learn new skills or maintain learning in
established interests is good for mental health, possibly slows cognitive
decline and helps with symptom control (distraction).
Give
• Doing things for others is rewarding. Encourage the older person to see
themselves as worthwhile, valuable contributors in their own communities,
however small that might be. Evidence shows that altruism is good for
mental health and the palliative care literature demonstrates that even the
very ill welcome opportunities to be involved in work that helps others.
Adapted from http://www.neweconomics.org/projects/entry/five-ways-to-well-being.

Frailty, however, implies vulnerability to a loss of function in many areas.

There are a number of scoring indices for frailty. The Fried Frailty Score
assesses:
• slowness in walking
• exhaustion
• weakness (decreased hand grip strength)
• physical inactivity (low energy expenditure)
• weight loss (body mass index <18.5 or >5% weight loss in the last year).
A score of 3 or more defines frailty, although slow walking, low physical
activity and weight loss, as well as cognitive impairment, were independently
associated with disability and a poorer prognosis.

Assessment of the frail elderly person presenting in a medical

setting
The frail elderly person may present acutely to medical services in a number of
different ways. It is essential for there to be an individual focus on improving
and/or maintaining the current quality of life. As there is a high mortality in this
group, all care of the frail elderly person can be considered ‘palliative’. A central
tenet of palliative care is to assess the presence and severity of symptoms and to
elicit the patient's priorities for future management. This will identify frail
adults. Thus acute hospital admissions provide an opportunity to begin
discussions with patients and their families about their preferences for future
care. Treatment should be offered on the basis of individual need and potential
for benefit for that individual, rather than chronological age. The aims of
assessment and management are to:
• identify and treat reversible causes of decline
• detect and control troublesome symptoms and form individualized treatment
plans
• screen for weight loss, pain, dyspnoea, falls, depression and insomnia
• assess severity of frailty and identify those with worse prognostic indicators
(see above)
• communicate to the patient and the family the prognostic implications of frailty,
its likely course, and available support.

Context of the consultation

Care with regard to the setting and conduct of the consultation is necessary to
enable individuals to tell their story and make their wishes clear. Assessment
may need to be phased to obtain all the necessary information and should
involve the multidisciplinary team, as medical and social care needs can often
not be differentiated; one is only possible when the other is implemented
effectively.
 The following are questions to ask:
• Is the individual frail elderly person being treated in a dignified way? Are
they being called by their title and surname, and not a diminutive? Are people
shouting at them or belittling them? Are they dressed, covered up, sitting
comfortably and/or adequately supported if in bed?
• Does the patient have problems with hearing or sight? Do they have particular
communication needs, e.g. a quiet side room to avoid background noise, help
with their hearing aid (is it in? is it working?), assistance finding their glasses.
• Do they need help with information to support their use of drug treatment or
understanding of their illness?
• Have they come from home or somewhere else? Does this setting suit them or
is it now part of the problem (see Box 3.8)?
A full assessment of mental capacity is necessary. In those who are unable to
provide their own full history, details should be sought from other sources of
information such as:
• those looking after them in their nursing or residential home
• their primary care team
• their relatives who support them to live independently/with whom they live.
Ensure that you know whom to contact for advice if you have any doubts
about the individual's ability to make informed decisions for themselves. Always
take advice from a senior clinician if you have doubts.

Management of the frail elderly person

Following the comprehensive assessment, an early priority is to reverse what is
reversible; rehabilitation should be provided, again tailored to the individual's
potential for improvement or adaptation.
• Treat symptoms. Investigation and treatment of known medical problems
should be appropriate for the individual (Box 3.10). Investigation and
management of any new disease will follow the general principles as for other
age groups but remembering that the frail elderly will have a high mortality in
the year after admission.

 Box 3.10
 Care of the frail elderly person: an example
Mrs Jones is found to have a urinary tract infection, which responds well to
oral antibiotics. An assessment demonstrates that her hearing aid needs
changing and that her sight might be improved by anti-vascular epithelial
growth factor injections for her macular degeneration. She no longer requires
metformin and her statin is stopped, as it is no longer providing her with
benefit. Rehabilitation with more mobility aids is enabling her to transfer from
bed to chair and so get up during the day. She is found to have an abdominal
mass but declines investigation of it beyond the CT scan. However, she does
report that the mass is painful and she is referred to the hospital palliative care
team. Her pain is easily controlled on a small regular dose of oral opioid and a
community palliative care nurse specialist follows her up with primary care in
her nursing home, where she dies 3 months later, without further admission.

• Discuss the future sensitively. Discussions about wishes for future care are
complex with anyone who has life-threatening disease. They may not see
themselves that way and assumptions should not be made about what frail
elderly individuals want or how they view their health status. They may not feel
that they are particularly ill or even that they have a poor prognosis, despite
having reached a great age. General medical management needs to be
integrated with symptom control. The SPC team should be contacted for advice
or involved with management when there are difficulties with this or with
complex discussions with the individual or their family.
• Review the drug chart. One feature of frailty is that patients are often taking
large numbers of drugs, some of which may be causing disabling adverse
effects without any immediate benefit for that individual's quality of life.
Reviewing every drug with the patient may be very helpful in lessening
symptom burden and may help reduce confusion and sedation.
In summary, palliative care should be available to everyone on the basis of
need. It is frequently not offered to the frail elderly and symptoms are known to
be both under-detected and under-treated in this group. Ensure this does not
happen when you are caring for a frail elderly person. Contact the palliative care
team for advice, even if referral for transfer of care is not necessary.

Further reading
Iliffe S, Swift CG. Assessment and prevention of falls in older people –
 concise guidance. Clin Med 2014; 14:658–662.
Moorhouse P, Rockwood K. Frailty and its quantitative clinical evaluation.
J R Coll Physicians Edinb 2012; 42:333–340.
Pal LM, Manning L. Palliative care for frail older people. Clin Med 2014;
14:292–295.
Rodriguez-Mañas L, Fried LP. Frailty in the clinical scenario. Lancet 2015;
385:E7.
Song X, Mitnitski A, Rockwood K. Prevalence and 10-year outcomes of
frailty in older adults in relation to deficit accumulation. J Am Geriatr Soc
2010; 58:681–687.
Wou F, Conroy S. The frailty syndrome. Medicine 2013; 41:13–15.
https://www.youtube.com/watch?v=MTcopj6dYWQ Dignity in care.

Care of the Dying

Most people express a wish to die in their own homes, provided their symptoms
are controlled and their carers are supported. However, patients die in any setting
and so all healthcare professionals should be proficient in end-of-life care.
Reports of inadequate hospital care have led to the development of integrated
pathways of care for the dying. Pathways act as prompts of care, including
psychological, social, spiritual and carer concerns in those who are diagnosed as
dying. The latter is a decision reached by a multiprofessional team through
careful assessment of the patient and exclusion of reversible causes of
deterioration.

Do not attempt resuscitation (DNAR) orders

• The resuscitation status of every patient should be discussed by senior doctors
at the time of admission and the decision documented in the notes.
• Many hospitals have specific DNAR forms. Deciding a person's resuscitation
status is a careful balance of risk versus benefit. The patient's co-morbidities
and pre-morbid quality of life should be taken into account.
• The patient and family should be involved in this discussion, and the medical
reasoning behind the decision explained. If the patient requests that
cardiopulmonary resuscitation is not performed in the event of
cardiopulmonary arrest, those wishes should be respected.
Remember that a decision not to resuscitate a patient is not the same as the
decision to withhold other treatment. A patient who is not for resuscitation may
still be eligible for antibiotics, fluids, endoscopy and even surgery. Management
should remain positive, allowing the patient to die free of distress and with
dignity.

Care of the dying tools

The Liverpool Care Pathway (LCP; Box 3.11 ) has come in for a great deal of
criticism. It is a four-stage end-of-life tool designed to transfer the standard of
hospice care of the dying into the hospital (see Box 3.10 ). Now adapted for any
setting, it was the most commonly used pathway for care of the dying in the UK
and is still in use in several other countries.

 Box 3.11
Stages in the Liverpool Care Pathway – an end-of-life
tool
• Recognition of the dying phase
• Initial assessment (which includes the patient's and carers' understanding and
psychological state)
• Ongoing assessment and monitoring
• Care of the carers after the patient's death

The LCP has provision for departures from the ‘prompts of care’ – for
example, discontinuation of intravenous antibiotics or parenteral fluids – if a
clinical need can be demonstrated. The patient is reviewed regularly (at least
daily). Occasionally, the patient improves whilst on the pathway and can be
returned to usual care if this is deemed more appropriate by the clinical team.
For those who do not improve, the LCP prompts advanced prescription of
medication to ease the symptoms most likely to arise in the dying phase (pain,
breathlessness, nausea, agitation and excess respiratory secretions) to allow
timely action.
Engagement with family and carers is vital, and it should not be assumed that
they will recognize or understand the signs of imminent death. The LCP has
supportive information leaflets that carers should find useful.
UK national hospital audits have assessed and monitored the level of care
documented against the standards set in the LCP. However, following some well-
publicized errors of implementation of the tool in the UK in 2013–2014, and in
the face of a lack of randomized controlled trial evidence to support its use, the
LCP was withdrawn and replaced by individual care plans outlined by the
Leadership Alliance for the Care of Dying People. Since then, a cluster
randomized trial of the LCP in cancer patients has reported no significant
difference in overall quality of care, but did show improvements in coordination
of care, treatment with dignity, family self-efficacy, and respect and information
and decision-making.

Further reading
Costantini M, Romoli V, Leo SD, et al. Liverpool Care Pathway for
patients with cancer in hospital: a cluster randomised trial. Lancet.
2014;383:226–237.
General Medical Council. Treatment and Care Towards the End of Life:
Good Practice in Decision Making. GMC: London; 2010.
Hawkes N. Doctors need more training in care of the dying. BMJ.
2015;351:h4792.
Heath I. Role of fear in over-diagnosis and over-treatment – an essay by
Iona Heath. BMJ. 2014;349:g6123.
Kelley AS, Morrison RS. Palliative care for the seriously ill. N Engl J
Med. 2015;373:747–755.
Leadership Alliance for the Care of Dying People. One Chance to Get it
Right: Improving People's Experience of Care in the Last Few Days or
Hours of Life. https://www.gov.uk; 2014.
Lyons D. The confused patient in the acute hospital: legal and ethical
challenges for clinicians in Scotland. J R Coll Physicians Edinb.
2013;43:61–67.
Marie Curie Palliative Care Institute Liverpool (MCPCIL) in collaboration
with the Clinical Standards Department of the Royal College of
Physicians (RCP). National Care of the Dying Audit – Hospitals
(NCDAH) Round 2, 2008–9. [Supported by the Marie Curie Cancer
Care and the Department of Health End of Life Care Programme]
London: MCPCIL/RCP; 2009.
http://www.legislation.gov.uk/ukpga/2005/9/contents [Mental Capacity
Act 2005].