Palliative Care in
Mesothelioma
Handbook for Nurses

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Applying palliative medicine in mesothelioma

1

Symptoms in mesothelioma

2

3 steps of symptom management

3

Dyspnea in mesothelioma

4Pain in mesothelioma

9

Other common symptoms in mesothelioma

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For successful palliative care in mesothelioma

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For good communication

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Contents are based on the lecture ‘Palliative care of Pleural mesothelioma’
conducted on November 2012, ‘Coominication skill in care of prople with mesothelioma’
conducted in 2014. Also some contents were reffered to Ahmedzai S H., Clayson H(2006).
Supportive and Palliative Care in mesothelioma. In: O’Byrne K., Rush V, eds.
Malignant Plueral Mesothelioma : Oxford University Press, 2006; 403-433, Nagamatsu
Y, Horiuchi S, Natori Y (2012). The stages and difficulties of patients with malignant
pleural mesothelioma. J Human Care Study, 12, 69-81.

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1. Applying palliative medicine in mesothelioma
Mesothelioma is a devastating disease for patients and their families
as it causes great suffering. For this reason, and because of the shortmedian survival time of fewer than 12 months from diagnosis, it isimportant to introduce a palliative approach to patient management froman early stage, preferably from the time of diagnosis.
Palliative medicine aims to provide holistic care of people whose illness
is acknowledged to be incurable. This approach combines threeintentions:
 the best possible treatment of physical symptoms
 attention to and management of psychological andsocio-emotional problems
 support of the patient’s family during the illness and in
bereavement32. Symptom in mesothelioma
Mesothelioma creates a particularly high symptom burden. It produces
as much breathlessness as and significantly more pain than lung cancer,
as well as many other symptoms:

Breathlessness 96%

Social

16%

Pain

91%

Nausea

14%

Cough

41%

Fatigue13%

Weight loss

41%

Dysphagia

11%

Anxiety31%

Psychiatric

10%

Anorexia

25%

Constipation

8%

Depression

19%

Ascites8%

Sweating

18%

5%

Emotional

16%

Vomiting
Painfulmetastasis

5%

Table 1: Symptoms in malignant pleural mesothelioma
Clayson H (2007): The Experience of Mesothelioma in Northern England

It is not appropriate to apply lung cancer care into mesothelioma because
mesothelioma causes more dyspnea and pain than lung cancer.

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3. 3 steps to manage symptoms

Step１：
Understand the meaning of symptoms for individual
patients

Step 2：
Correct the correctable physical causes of symptoms

Step 3:Do all possible to reduce the perception of symptoms
by using evidence-based treatments alongside attention
to psychosocial factors

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4. Breathlessness in mesothelioma
Breathlessness is a very common symptom in Mesothelima.
Prevalence in mesothelioma is 96%, hence 21-90% in cancer.

The Causes are:• Pleural effusion• Reduction in lung volume• Fixed lung
• Pericardial effusion• Anaemia• Co-morbidities• Anxiety
Breathlessness can be terrifying to experience as shown by these quotes
Breathlessness can be terrifying to experience as shown by these quotes
from patients:from patients:‘Fighting for breath’, ‘gasping for air’, ‘drowning in fluid’,‘Fighting for breath’, ‘gasping for air’, ‘drowning in fluid’,‘suffocating to death’, ‘out of control’‘suffocating to death’, ‘out of control’
Breathlessness is a bio-psychosocial phenomenon. Although they arehugely anxious, patients and relatives do not know when to call for help
and often wait until they are desperate. Crises cause fear of imminent
death. Breathlessness is visible, stigmatising and causes social
isolation due to lack of mobility, loss of agency and embarrassment.
Note:




Breathlessness in mesothelioma has multiple aetiologies – not allphysicalThere is NO correlation between patients’ degrees of perceptionof breathlessness and blood gas levels or respiratory rate
There is NO correlation between relief of breathlessness andphysiological measurements

Therefore the only reliable measurement is self-report64-1. Management of Breathlessness
1. Treat all correctable causes, for example:








Aspirate pleural effusion and consider pleurodesis forrecurrent cases*
Surgery may release a ‘trapped lung’
Surgical aspiration of pericardial effusion
Correct anaemia
Control heart failure
Antibiotic for infection
Explore and manage anxiety*An indwelling pleural catheter is effective in refractory cases
in which pleurodesis has failed. The indwelling drain can be
managed by the patient’s family and may create pleurodesis with time.
This has been found to reduce the number of hospital admissions forrecurrent effusions (see diagrams below)

Diagrams 1 and 2: Indwelling pleural drain

72. Everyone should have a hand-held fanThis is a simple low-cost, low-tech intervention that should beoffered to every patient who has difficulty breathing; it will dono harm. The patient should direct the fan so that the cold air blows
onto the lower part of the face.
NB: Hand-held fans are preferred to static fans possibly because they
promote a sense of mastery
The movement of cool air with a fan has been observed to reduce
dyspnoea in patients.
It is thought that stimulation of
mechanoreceptors or temperature receptors mediated via thetrigeminal nerve may alter afferent feedback to the brain and modify
the perception of dyspnoea.

3. Use low-dose morphine
Suggested starting dose is 2.5mg oral morphine solution every 4 hours
if needed to relieve breathlessness. If this fails to improve thepatient’s breathlessness the dose should be increased gradually inline with the normal prescribing guidance for morphine.
Note:
The highest density of opioid receptors is found in alveoli, bronchi
and trachea. Morphine reduces minute ventilation by slowing
respiratory rate and tidal volume. There is no evidence of
respiratory depression when used in line with standard prescribing
guidance for morphine.

84. Use complementary therapies such as relaxation, pacing activities,
visualization to encourage the patient to gain some control
5. Use rehabilitation or physiotherapy specialists to teach thepatient about Breathing Control
6. Educate carers so that they can assist the patient
7. Use a multi-dimensional approach, considering all possible
interventions as shown in the following diagram:

Handheld fan

Psychologicalapproaches

Opioids
Air (oroxygenTreat comorbiditiesComplementarytherapies

If hypoxic)

Breathlessness

Carer
supportSurgery
to release
fixedChemot lungherapyBenzodiazepineRehabili
tationDiagram 3: Multidimensional interventions for breathlessness

94-2. End of life terminal dyspnoea
This is extremely distressing for the patient and his family. At endof life the following medications should be used to relieve distress:
IV morphine is choice: 2 - 5 mg IV Q5-10 minutes until relief
In rare cases, where relief is not obtained, it is ethical andcompassionate to provide sedation by using barbiturates or
benzodiazepines e.g. midazolam to relieve patient of symptoms

In summary, after correcting all treatable conditions, improve
mastery before breathlessness becomes refractory: Explore patient’s understanding, hopes, fears &expectations
 Always provide a hand-held fan Use low-dose morphine Consider complementary and creative therapies
 Involve family/carers
 Involve rehabilitation if appropriate
 Use oxygen if hypoxic

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5. Pain in mesothelioma
Pain is also very common symptom in Mesothelima.
Pain sore of mesothelioma is higher than the one of lung cancer2).
2)Nowak A, Stockler MR, Byrne MJ. Assessing quality of life during chemotherapy for pleural
mesothelioma: feasibility, validity, and results of using the European Organization for Research
and Treatment of Cancer Core Quality of Life Questionnaire and Lund Cancer Module. Journal of
Clinical Oncology 2004;22:3172-80.

Quotefromfrompatientpatientwith
withmesothelioma:
mesothelioma:
Quote

‘...
thepain’s
pain’salways
alwaysthere
therebut
butIIcancancontrol
control it
it withwith the‘...
thethe medication,
medication,up
toapoint.
It
variesdaybyday;sometimes
it’ll
pull
up to a point. It varies day by day; sometimes it’ll pull inin mymy back,back,othertimes
times
it’ll
pull
front,
other
times
it’ll
where
I
other
it’ll
pull
in in
my my
front,
other
times
it’ll
pullpull
where
I had
had
my
biopsyit’sreal
my biopsy - it’s really nasty when it gets to that area.’

The Cause of Pain
Pain in mesothelioma is complex due to the various pain-sensitive
structures that might be involved: the pleura, intercostal nerves,
pericardium, diaphragm, ribs and vertebrae, spinal cord and nerve rootsplus nerve plexuses e.g. brachial plexus. Thus the pain can be of
inflammatory, neuropathic or bony origin.
A combination of these types of pain frequently occurs and any perceptionof pain is greatly moderated by psychosocial factors. Fear andanticipation of pain are common to all cancers but the severe
psychological burden in mesothelioma, and its impact on pain perception,requires particular understanding. This means that efforts to achieve
pain control need to address these various factors; this requires a11multidimensional approach as in the diagram below:

OpioidNon-steroidal
antiinflammatory drugs

Topicalanaesthetic

Complement
ary

Neuropathic
pain
medications

Pain

Chemotherapy

therapies
Carer
Psychologicalapproaches

Local
nerve
blocksRegional
supportnerve
ablation e.g.
percutaneous
lateralcordotomy

Diagram 4: Multi-dimensional interventions for pain12

5-1. Management of Pain in mesothelioma
Inflammatory pain: Tumour cells and possibly asbestos fibres invade
soft tissues and interact with host macrophages release of cytokines,
prostaglandins and other vasoactive substances which create theinflammatory response.
TreatmentThis may respond to simple non-steroidal anti-inflammatory drugs,
or occasionally to corticosteroids (these may also increase appetiteand general well-being but due to their side-effects are notrecommended for long-term use). Regular paracetamol, 1gm qds or amild opioid analgesic such as codeine may be added with benefit.
Morphine is not very effective for this type of pain but more
specialized drugs such as methadone and ketamine haveanti-inflammatory actions.

Neuropathic pain: This arises when there is damage to either peripheral
nerves or to nerve structures in the CNS. It can be self-perpetuating.
Typical sensations that patients describe are burning or coldness, raw,
‘electric shocks’, numbness, itching and tingling. Hypersensitivity
to stimuli (allodynia) and altered sensations (dysaesthesia) are common.
Patients typically rub or tightly hold the affected area.
Treatment

Antidepressants e.g. amitriptyline, commencing at 25mg at night
Anticonvulsants e.g. gabapentin
NMDA antagonists e.g. methadone (opioid) or ketamine
Topical lidocaine 5% patches for localized pain e.g. a small areaon the chest wall or a track metastasis

13Bone Pain: Local advanced tumour or metastatic hurt nerves in bone.
Also cytokines and koninis released by tumour cause long-term
sensitisation as in neuropathic pain. This happens when rib andvertebral bodies are invaded by mesothelioma.
Treatment

Bone pain may have nociceptive, inflammatory and neuropathic
elements so any of the above medications may be useful. However,in addition, radiotherapy to a localised area of bone pain is highly
effective.
Complications: rarely, paralysis of ipsilateral diaphragm, and 11%
experience mild motor loss or dysaesthesia.

Break through pain:This is pain that occurs between doses of a regularopioid and is not due to inadequate dosing.
Treatment

All patients who are prescribed sustained release morphine shouldhave a supply of liquid oral morphine equivalent to 1/6th of the
24-hour dose to use if breakthrough pain occurs.
Example: A patient who is taking s/r morphine 60mg twice a day i.e.
120mg per 24 hours, should also have a supply of liquid oral morphine
and take 20mg if breakthrough pain occurs. If more than 2 doses are
required in 24 hours then the regular long-acting dose of morphine
should be increased to at least the sum of all doses required in
the previous 24-hour period.

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5-2. Pain control in mesothelioma – a suggested model:

Step１：Non-opioid +/- non-steroidal anti-inflammatory drug
For localized chest wall pain consider topical local anaestheticor, if bone pain, use radiotherapy

Step 2：Start opioid
Use short-acting oral morphine solution initially and start at low
dose e.g. 2.5mg 4-hourly as required. Once pain control has beenachieved, usually within a few days, convert the effective total
24-hour dose into regular doses of a long-acting morphine – to betaken regularly. A laxative should ALWAYS be prescribed withmorphine as intractable constipation is a very distressing
side-effect.
Sometimes patients cannot tolerate the side effects of morphine inwhich case an alternative opioid such as oxycodone may be used.

Step 3: Add a neuropathic pain agent
If any clinical features suggest neuropathic pain and there has beenno improvement on morphine then stop morphine and commence a
neuropathic pain agent (see above).
If morphine has helped but there are still features of neuropathic
pain then add a neuropathic pain agent as above.
In some cases two neuropathic pain agents with different modes ofaction may be more effective than one

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Step 44: Refer for Specialised interventions
Step
If distressing
distressing pain
pain persists
persists refer
refer quickly
quickly forfor specialized
specialised
Ifinterventions:interventions:
Ketamine andand methadone:
methadone:These
These22analgesic
analgesicmedications
medicationscan
canbebehighlyhighlyKetamine
effectiveinrefractory
pain
but
both
requirespecialist
managementdue
effective in refractory pain but both require specialist management due
to theirtheir complex
complex actions
actions andand thethe possibility
possibility ofof major
major side
side effects.
effects.
toPercutaneouscervicalcervicalcordotomy:
cordotomy:This
Thistechnique
techniqueinvolves
involvesablation
ablationofof thethePercutaneouscontra-laterallateralspinothalamic
tract
and
is
used
for
unilateralcontra-lateral lateral spinothalamic tract and is used for unilateralsevere pain
pain below
below thethe clavicle.
clavicle. It
It cancan bebe very
very useful
useful inin pleuralpleuralseveremesothelioma. The
The patientpatient must
must bebe ableable toto lielie still
still forfor 11 hour
hour andand bebemesothelioma.
consciousandcooperative
47%
achieveprolonged
benefit(Jacksonetconscious and cooperative - 47% achieve prolonged benefit (Jackson etal, 1999).
1999). This
This isis only
only available
available inin specialized
specialised centers.
centres.
al,16

5-3. Pain assessment
The rule is that ‘pain is what the patient says it is’ – therefore
self-assessment is the only reliable method of pain evaluation. Painscore charts or visual analogue scales can be extremely useful indetermining whether or not treatments are effective when used byindividual patients as a self-comparison method.

5-4. How to use Morphine
Start low dose every 4 hours, using liquid oral morphine
Increase quickly – every 3 days initially - until pain is controlled
Then switch to a sustained release preparation
If side effects occur consider:
1. Is the dose too high?
2. Would an alternative opioid be better or
3. Ask ‘Is this neuropathic pain?’ If so, change to medication forneuropathic pain
Other Opioid: Oxycodone, fentanyl, methadone, Ketamine

176. Suggestions for managing other common symptoms
Cough – establish cause; consider dexamethasone if an inflammatory cause,
gabapentin if muscle spasm, antibiotic if infection
Rarely, after radical extra-pleural pneumonectomy (EPP), consider postsurgical bronchial fistula
Sweating – consider cimetidine, use cotton clothing and a fan
Fatigue – may benefit from rehabilitation if well enough or pacing ofactivities or corticosteroid (short-term)
Nausea – metoclopramide or haloperidol initially but may needcorticosteroid +/- levomepromazine. Two thirds of patients need morethan one anti-emetic in combination
Anxiety – honest but compassionate information and assurance ofcontinuing support for the patient and family. If the patient is also
depressed mirtazapine is particularly useful due to its side effect ofincreasing appetite as well as lifting mood. Complementary therapies
may help e.g. visualization, relaxation etc.
Patients who are still well enough can benefit greatly from attending
an asbestos victim support group
In some cases formal psychiatric assessment may be necessary
Consider involvement of faith leaders if appropriate.

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7. Summary: For successful palliative care in mesothelioma:
1 Address all symptoms that cause suffering
Pain in mesothelioma is complex and severe, breathlessness
is terrifying, multiple other symptoms occur, andpsychological issues worsen the experience of symptoms.
Multiple medications are often required.
2 Act quickly
British Thoracic Society guidelines suggest palliative
care by specialists should be introduced in early stagesof mesothelioma. However even in UK around half themesothelioma patients do not receive palliative care. Be
aware that severe symptoms arise quickly in mesothelioma,
and tend to get worse as the disease progresses (unlike inmost cancers where they tend to plateau). Be prepared toact quickly and refer rapidly for appropriate treatment bya palliative or pain management specialist working within
a multi-disciplinary team
3 Address psychosocial issues
Mesothelioma causes much distress and the psychosocial
issues exacerbate physical problems. Try to understandwhat is causing distress to individual patients, always
treat them with respect and compassion, and reassure themthat you will support them and their families throughout
the illness.

198. For good communication with people with mesothelioma
A trusting relationship between the patient and his or her medical
professionals to good palliative care and this relationship must be basedon honesty. Also being polite to patients is essential because no one want
to be treated as a child or incompetent one at the end of life. Now he/she
is weak and unable to take care of himself, but he/she used to have awonderful life. Also speak kindly with soft voice because patients arefull of pain psychologically as well as physically. Medical staffs must
respect them when my patient refuses the offer. All staffs must simply
behave like the way one want to be treated when he/she die.

Patients have a right to know
Patients have a right to information about their condition and you should
not withhold information necessary for their decision-making (unless you
judge it would cause the patient serious harm that is more than simply cause
upset). If families are told the disease is fatal but the patient is nottold the truth a great deal of tension is created between them that add tothe emotional problems of all concerned.
In the UK, the patient’s family is informed about the illness only if thepatient first gives consent for this tohappen. Families and doctors cannot
and should not make decisions forconscious patients who have full mental
capacity because assumptions aboutothers’ wishes are frequently
incorrect – the only way of knowing
what someone wants is to ask. Of
course, patients need to be fully
informed in order to express
preferences and make appropriate decisions.

20How to inform bad news
The first issue in mesothelioma is that the doctor must tell the patientand his or her family that, regardless of whatever treatments might be chosen,
there is no cure for this illness. This communication must be done withgreat compassion and sensitivity, checking
the patient’s understanding while allowing
him to absorb the bad news at his own pace.
The information will come as a dreadful shockto the patient and might well need to berepeated because the patient will often havedifficulty believing that there is no cure.
As patients come to understand that message,
it is essential to tell them that a lot can be done to ease the symptoms
and also that you, the doctor, will be available to provide support
throughout the illness. Rather than saying ‘There is no cure, nothing canbe done’ - remarks that leave patients extremely shocked and traumatized- it is better to say something like ‘I am sorry that we cannot cure yourcondition but we will do all we can to delay its progress and help you deal
with it and we will support you and your family at all times’.
Communication skills training at undergraduate and postgraduate levels will
help doctors with this difficult task.
It is known that being honest about prognosis helps both patient and doctor:
The patient, knowing that his time is limited, is able to regain control andplan ahead, make choices about his end-of-life care and make his wishes known
to his family

The doctor is not then engaged in keeping up pretense and colluding with thepatient and his family about the illness. This allows the doctor toconcentrate on relieving the patient’s symptoms and other problems.

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Coping narrative
Patients (and relatives) were determined to assure medical staffs that they
were coping. The ‘coping narrative’ is an important strategy inmesothelioma and restores a sense of control, bolsters self-esteem andinhibits enquiry & disclosure around emotionally-distressing areas – BUT
it also inhibits asking for help and compromises family carers and healthcare professionals
It is important role of nurses to assess the real needs.

Mesothelioma progress quickly. The
problems and symptoms happen one after
another take away the time and ability
to solve each problem. It is distressing
to get a new problem just before solving
previous one. This is what amesothelioma patient’s experience. One
loose ability to do something when
attacked by multiple difficulties.
Sometimes a patient cannot face theproblem or waste time by stick to one matter. Medical staffs are feel ‘Iwish he/ she did …’ however that may be all that patient can do because
he/ she had too much burden. Probably he/she suffer most. Medical staffs
should not to blame patient’s attitude or decision but support all the time.

22Palliative Care in Mesothelioma
Handboodk for Nurses(Not for sale)

Written by

Sarah Y Nagamatsu
Helen Clayson
Yukiko Nakayama©2015. All rights reserved.
Published by

Mesothelioma Nursing Japan
Sarah Nagamatsu

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