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158 Chapter 11

37. Medici, V., Rossaro, L., Wegelin, J.A. et al. (2008). The utility of

the model for end-stage liver disease score: A reliable guide for

liver transplant candidacy and, for select patients, simultaneous

hospice referral. Liver Transplantation 14: 1100–1106.

38.

European Association for the Study of the Liver. (2010). EASL

clinical practice guidelines on the management of ascites,

spontaneous bacterial peritonitis, and hepatorenal syndrome

in cirrhosis. Journal of Hepatology 53: 397–417.

39.

Sykes, N.P. (2010). Constipation and diarrhoea. In: The

Oxford Textbook of Palliative Medicine, 4e (ed. G. Hanks, N.I.

Cherny, N.A. Christakis, M. Fallon, S. Kaasa, K. Russell, and

R.K. Portenoy), Oxford: Oxford University Press.

40.

Larkin, P.J., Sykes, N.P., Centeno, C. et al. (2008). The

management of constipation in palliative care: Clinical

practice recommendations. Palliative Medicine 22: 796–807.

41. McElligot, E., Quigley, C. and Hanks, G.W. (1991). Tranexamic

acid and rectal bleeding. Lancet 29: 37–39.

42.

Regnard, C.F.B. (1991). Control of bleeding in advanced

cancer. Lancet 337: 974.

Further Reading

Nutrition, tube feeding, and PEG

Stroud, M., Duncan, H., and Nightingale, J. (2003). Guidelines for

enteral feeding in adult hospital patients. Gut 52 (Suppl VII):

vii1–vii12.

Cirrhosis and its complications

Menon, K.V. and Kamath, P.S. (2000). Managing the compli-

cations of cirrhosis. Mayo Clinic Proceedings 75 (5): 501–509.

26. Ang, S.K., Shoemaker, L.K. and Davis, M.P. (2010). Nausea

and vomiting in advanced cancer. American Journal of Hospice

and Palliative Medicine 27 (3): 219–225.

27.

Brooksbank, M.A., Game, P.A., and Ashby, M.A. (2002).

Palliative venting gastrostomy in malignant intestinal

obstruction. Palliative Medicine 16: 520–526.

28.

Taylor, R.H. (1985). Laparotomy for obstruction with

recurrent tumour. British Journal of Surgery 72: 327.

29. Krebs, H. and Goplerud, D.R. (1983). Surgical management of

bowel obstruction in advanced ovarian cancer. Obstetricians

and Gynecologists 61: 327–330.

30.

Feuer, D.D.J. and Broadley, K.E. (2000). Corticosteroids for

the resolution of malignant bowel obstruction in advanced

gynaecological and gastrointestinal cancer. Cochrane

Database of Systematic Reviews 1: CD001219. doi:

10.1002/14651858.CD001219.

31.

DeConno, F., Caraceni, A., Zecca, E. et al. (1991). Continuous

subcutaneous infusion of hyoscine butylbromide reduces

secretions in patients with gastrointestinal obstruction.

Journal of Pain and Symptom Management 6: 484–486.

32.

Ripamonti, C.I. Easson, A.M. and Gerdes, H. (2008).

Management of malignant bowel obstruction. European

Journal of Cancer 44: 1105–1115.

33. Riley, J. and Fallon, M.T. (1994). Octreotide in terminal

malignant obstruction of the gastrointestinal tract. European

Journal of Palliative Care 1: 23–25.

34. Ramirez, F.C., Dennert, B., Zierer, S.T. et al. (1997). Esophageal

self-expandable metallic stents-Indications, practice,

techniques and complications, results of a national survey.

Gastrointestinal Endoscopy 45: 360–364.

35. Office for national statistics (2008). Health service quarterly.

Wint er 40: 59–60.

36.

Macnaughtan, J. and Thomas, H. (2010). Liver failure at the

front door. Clinical Medicine 10 (1): 73–78.

https://t.me/med1917

Handbook of Palliative Care, Fourth Edition. Edited by Richard Kitchen, Christina Faull, Sarah Russell and Jo Wilson.

159

The Management of Respiratory

Symptoms and Advanced Chronic

Obstructive Pulmonary Disease

Frances Hakkak

When you’re actually gasping, you think this is the last breath,

you really do. I can only put it down to feeling someone’s chok-

ing you and then just at the last second, as you’re about to die,

they loosen their hands off and you get a grasp of air and you

start again and it is bloody frightening it really is.

Patient with COPD [1]

Introduction

In this chapter, we will look at the causes of breathlessness

and other respiratory symptoms in both malignancy and

advanced non-malignant disease. We will start by consid-

ering specific symptoms related to malignancy and their

management; we will then discuss the assessment and

management (both non-pharmacological and pharmaco-

logical) of breathlessness and cough, regardless of the

cause. Finally, we will look at some particular issues associ-

ated with managing patients with non-malignant lung dis-

eases such as chronic obstructive pulmonary disease

(COPD) and interstitial lung disease (ILD).

Respiratory disease affects one in five people in the UK

and is the third most common cause of death. Hospital

admissions for respiratory-related diseases are rising at

three times the rate of admissions for other conditions [2]

and 20% of all ambulance arrivals to hospital are due to

acute-on-chronic breathlessness [3].

Breathlessness and other respiratory symptoms are fre-

quently experienced in advanced disease and can be

extremely distressing and debilitating. Yet, in comparison

to pain, they are poorly recognised, understood, researched,

assessed and managed. Dyspnoea is a better predictor of

five-year survival than airway obstruction in patients with

COPD [4]. In almost any condition, breathlessness worsens

in the last few months of life [5] and has a significant

impact on quality of life [6]. These are important symp-

toms that when paid attention to, can often be improved by

relatively simple interventions.

Causes of Respiratory Symptoms in

Advanced Disease

As with pain, it is important to make a detailed assessment

in order to ascertain the likely cause of breathlessness or

cough. Some causes may be reversible or have specific

treatments (see Table 1).

Managing Specific Problems Associated

with Malignancy

Lung Cancer and Lung Metastases

Systemic treatment (chemotherapy, immunotherapy, and

targeted therapy), radiation therapy, surgery, and steroids

may be used palliatively to help control symptoms

including breathlessness.

Pleural Effusions

Malignant pleural effusions can be a complication of var-

ious primary cancers including lung, breast, lymphoma,

gynaecological, and mesothelioma [7]. Effusions are

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160 Chapter 12

usually a sign of advanced disease. They are commonly

associated with progressive breathlessness although

patients can be asymptomatic. Chest pain, cough, and

haemoptysis can also be experienced.

The drainage of pleural effusions is usually done in the

hospital setting because of the requirement to use ultrasound

guidance and the small risk of causing a pneumothorax. A

one-off drain can be followed by talc pleurodesis to reduce

the risk of effusion recurrence; however this usually requires

a short inpatient stay. Increasingly, indwelling pleural cathe-

ters (PleurX

™

, Rocket

) are inserted which enable more reg-

ular drainage of small amounts of fluid by patients themselves,

family members, or district nurses in a community setting.

Drainage can be guided by symptoms, offering a sense of

control to most patients. Ultimately, the optimal management

will be influenced by patient preference, with some choosing

to avoid any form of drainage.

Pulmonary Embolism (PE)

Cancer and chemotherapy are both risk factors for devel-

oping a PE, which can cause acute and chronic breathless-

ness as well as cough and haemoptysis. As patients with

cancer can also have an increased bleeding risk, the diag-

nosis should be confirmed on computed tomography

pulmonary angiogram (CTPA) before committing to an

extended period of anticoagulation. Treatment is usually

with low-molecular-weight heparin (LMWH) injections

initially and then a switch to a direct-acting oral anticoag-

ulant (DOAC) can be considered depending on individual

factors including renal function and bleeding risk.

Treatment is usually for 3–6 months although ongoing

active cancer remains a risk factor and some advocate near

life-long treatment or prophylaxis in these circumstances.

In practice for each individual the risks, burdens and ben-

efits should be considered and regularly reassessed and it is

often appropriate to discontinue long-term anticoagula-

tion in a person entering the last weeks of life, and certainly

in the last days. In addition to chronic breathlessness, some

patients experience “post-thrombotic panic” [8]. The

interplay between breathlessness, anxiety and panic attacks

and how to best manage this, will be discussed later.

Lymphangitis Carcinomatosis

Lymphangitis carcinomatosis is uncommon and is due to

the diffuse infiltration and obstruction of the pulmonary

parenchymal lymphatic system by tumour cells. It causes

progressive dyspnoea and a dry cough and is associated

with a poor prognosis [9]. It most commonly occurs in

people with breast, lung, gastric, and pancreatic cancer

[10] but can also occur with many other primaries.

Systemic corticosteroids can be helpful [11] for example,

dexamethasone 8 mg OD PO.

Superior Vena Cava (SVC) Obstruction

The SVC can be compressed directly by lung tumours or

by lymph nodes in the chest from breast, oesophageal,

bowel, testicular primaries, or lymphoma. Breathlessness

and other features (oedema and redness of face/neck/

upper limbs, headaches, dizziness, altered vision, dys-

phagia, and prominent distended upper chest wall veins)

can develop rapidly over a period of days to weeks. Urgent

radiotherapy, stenting, or in some circumstances chemo-

therapy may be indicated. Supportive measures include

Table 1 Causes of breathlessness.

Causes of Breathlessness

Related to malignant disease

Lung cancer

Mesothelioma

Lung metastases

Malignant pleural effusion

Pulmonary embolism

Superior vena cava obstruction

Lymphangitis carcinomatosis

Anaemia

Ascites

Drug-related pneumonitis

Large airway obstruction and problems with

tracheostomy/laryngectomy in head and neck cancer

Related to non-malignant disease

Chronic obstructive pulmonary disease

Interstitial lung disease (ILD)

Heart failure

Atrial fibrillation and other arrhythmias

Pericardial effusion

Respiratory muscle weakness for example, in Motor

Neurone Disease (MND)

Respiratory tract infection (bacterial, viral – including

COVID-19)

Obesity/physical deconditioning

Many of the causes of breathlessness listed here can also

cause cough.

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The Management of Respiratory Symptoms and Advanced Chronic Obstructive Pulmonary Disease 161

diuretics, oxygen, steroids, and maintaining an upright

position. Dexamethasone 16mg

daily PO/SC/IV is an

appropriate steroid dose in this situation [12]. As with all

causes of breathlessness, opioids, and benzodiazepines can

be helpful in alleviating symptoms.

Drug Related Pneumonitis

Pneumonitis is an uncommon but serious side effect of the

immunotherapy checkpoint inhibitors (a subclass of

monoclonal antibodies – MABs) sometimes used to treat

melanoma, Hodgkin’s lymphoma, urinary tract, breast and

lung cancers. The timing of onset can be variable [13].

Pneumonitis can also be a side effect of radiotherapy or

chemotherapy. Symptoms include breathlessness and a dry

cough. Fever and chest pain can also occur. The clinical

and radiological picture can be difficult to distinguish

from other causes of lung disease for example lymphangitis

carcinomatosis or infection. Treatment is with steroids e.g.

8–16 mg dexamethasone daily, tapering over 6–12 weeks,

plus supportive measures as needed, and the causative

drug should usually be discontinued.

Anaemia

Cancer-related anaemia can be due to bleeding, chronic

disease, bone marrow infiltration, or cancer treatment

(chemotherapy or radiotherapy). Some patients, with a

haemoglobin level of less than 70–80 g/L may benefit

symptomatically from a blood transfusion [14], although

the benefits can be short-lived that is, for just up to 2–4

weeks [15, 16] and therefore the potential risks, benefits

and burdens need to be considered for each individual’s

circumstances. Those with a sufficient prognosis may

benefit from investigating and treating iron/B12/folate

deficiency. Treatment with B12/folate can result in a hae-

moglobin rise in just 7–10 days [17]. Some centres treat

iron deficiency in people with heart failure with intrave-

nous iron which can significantly increase quality of life,

exercise capacity, and symptoms of heart failure [18].

Tranexamic acid can be used to reduce blood loss without

increasing the risk of thrombosis [19] and this can be par-

ticularly useful for patients who are distressed by their

bleeding. However, it is not recommended in those with

urinary bleeding because of the risk of clot retention.

Stridor (Large Airway Obstruction)

Stridor is a harsh, high pitched noise on inspiration due to

upper airway obstruction. Generally, stridor results from a

narrowing of a central airway or the larynx caused by

intrinsic or extrinsic tumour compression for example, in

head and neck, oesophageal and lung cancers. It can be

associated with SVCO. For those at risk, it is important to

establish and plan ahead regarding how it should be

managed. It is rarely a hyperacute problem but in some cir-

cumstances needs to be treated as an emergency.

Dexamethasone 16 mg IV/SC/PO can be given and oxygen,

with urgent ENT assistance sought for consideration of

surgical airway if appropriate. More often it is an antici-

pated problem associated with advancing disease.

Radiotherapy, chemotherapy, or stenting may be appro-

priate. Otherwise, symptoms can be managed with dexa-

methasone 8–16 mg daily, nebulised salbutamol, opioids,

and benzodiazepines. Advanced airway obstruction at the

very end-of-life can be distressing for patients and is best

managed with reassurance and midazolam 10 mg IM/SC.

Nebulised adrenaline 1 ml of 1:1000 diluted to 5 ml with

0.9% saline QDS can be beneficial [20]. Heliox 80:20 (80%

helium, 20% oxygen) can be considered if available. Heliox

is less dense and viscous than air and can help reduce the

respiratory work needed to overcome upper airway

obstruction.

Neck Breathers

Patients with head and neck cancer and tracheostomy or

laryngectomy can also be at risk of airway obstruction

when there is recurrent/advanced disease.

Secretion management can be problematic in this group.

Strategies to manage this include suctioning, use of carbo-

cisteine and/or nebulised saline to reduce secretion vis-

cosity, and antimuscarinics for example, glycopyrronium/

hyoscine butylbromide (via injection) or hyoscine hydro-

bromide (via a patch) to dry secretions. It may also be help-

ful to seek advice from your local team specialising in

tracheostomies and laryngectomies.

Haemoptysis

Haemoptysis is blood coughed up from a pulmonary

source. It can be distressing for patients and, when exten-

sive, can be a pre-terminal event. It most commonly occurs

in patients with lung cancer or lung metastases; however, it

can also be associated with infection or PE. Palliative radio-

therapy can be effective if due to tumour and the prognosis

is long enough for the patient to benefit. If infection is the

cause, treatment with antibiotics can help. Suspected PE

Note that parenteral dexamethasone is prescribed differently in some units through considering the dexamethasone base only (e.g.

3.3mg parenteral dexamethasone could be considered equivalent to 4mg oral dexamethasone for dexamethasone 3.3mg/ml solution).

https://t.me/med1917

162 Chapter 12

should be investigated and diagnosed if low-molecular-

weight heparin is to be considered. After excluding poten-

tially reversible causes, review and consider stopping any

drugs that might increase bleeding. Tranexamic acid 1 g

TDS can be considered for tumour related haemoptysis

which is frequent and distressing. Massive terminal hae-

moptysis is rare but, as with those at risk of airway obstruc-

tion, it is wise to discuss and plan ahead just in case. Use of

dark towels/sheets/blankets/tissues can lessen distress by

reducing the visibility of the bleeding. Have benzodiaze-

pines to hand including midazolam 10 mg IM/SC in case of

a catastrophic bleed. A calming environment and reassur-

ance however is often more important than any medications

given when death is imminent.

A Note on Steroids

Steroids can be considered to manage several of the above

scenarios. In a palliative care context, dexamethasone is

often the steroid of choice as it can be given subcutane-

ously, as well as in soluble tablets and oral solution if

necessary. Steroids should generally be prescribed at the

lowest effective dose for the shortest time necessary to pre-

vent side effects and physical dependence. Prescribe early

in the day where possible (with or after food) to reduce

insomnia, and consider night sedation for example, low

dose zopiclone, especially if the steroid dose used is high.

Always consider gastroprotection for example, with a

proton pump inhibitor (PPI). Screen for steroid induced

diabetes within 48 h of commencing or increasing the

dose. Initially this can be done with urinalysis or with a

late afternoon/early evening capillary blood glucose check.

Assessing and Managing Dyspnoea

Dyspnoea is the subjective sensation of breathlessness, of

difficult or uncomfortable breathing. As with pain, breath-

lessness is what the person feeling it says it is. As with pain,

the concept of “total breathlessness” should be considered,

with emotional, psychological, and social components

contributing to the overall experience.

Assessing Symptoms

As with assessing any symptom in palliative care, taking a

detailed history is key. It is important to ascertain any pre-

cipitating and alleviating factors. Look for associated

symptoms of cough, sputum, wheeze, pain, fevers, palpita-

tions, fatigue, oedema, orthopnoea, and paroxysmal noc-

turnal dyspnoea. Ask about associated anxiety, depression

and panic attacks. Which starts first? Does breathlessness

lead to anxiety or the other way round?

Severity can be assessed using dyspnoea scores such as

the Medical Research Council (MRC) Dyspnoea Scale (see

Table 2).

The MRC dyspnoea scale has been in use for many years

for grading the effect of breathlessness on daily activities.

This scale measures perceived respiratory disability and is

simple to administer as it allows the patients to indicate the

extent to which their breathlessness affects their mobility.

The impact of breathlessness can be significant and is

important to acknowledge. Consider the following: What

impact does it have on activities of daily living (ADLs)

such as washing, dressing, walking, eating, drinking, and

sleeping? What have their family members or carers

noticed? What can they still do or no longer do? What do

they struggle or need help with? Taking a shower can be

particularly difficult because of the enclosed space and the

steam that is generated. What is the impact of their breath-

lessness on them and those that matter to them? There can

be many losses experienced – loss of occupation, status,

role, identity. The social, financial, psychological, and

emotional impact can be huge and this can influence how

the symptoms are experienced for an individual.

The meaning of the breathlessness for an individual

patient is also important to assess. In addition to the associ-

ated losses, there may be fear. Fear of what the breathless-

ness means in terms of diagnosis, prognosis, of what dying

might be like. It is common for patients to be fearful of

dying gasping for breath, but it is uncommon that this actu-

ally happens. Understanding and acknowledging someone’s

fears or concerns is the first step in being able to address

them and perhaps reassure. Even the most severe states of

breathlessness can be helped pharmacologically and with

support to bring comfort and relief. It is important for

patients and their families to understand this to enable them

Table 2 The MRC dyspnoea scale.

1959 MRC Breathlessness Scale

Grade 1: Are you ever troubled by breathlessness except on

strenuous exertion?

Grade 2: (If yes) Are you short of breath when hurrying on

the level or walking up a slight hill?

Grade 3: (If yes) Do you have to walk slower than most

people on the level? Do you have to stop after a mile or so

(or after ¼ hour) on the level at your own pace?

Grade 4: (If yes to either) Do you have to stop for breath

after walking about 100 yds. (or after a few minutes) on the

level?

Grade 5: (If yes) Are you too breathless to leave the house, or

breathless after undressing?

Used with the permission of the Medical Research Council [21]

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The Management of Respiratory Symptoms and Advanced Chronic Obstructive Pulmonary Disease 163

to regain some quality of life and to consider their options

for example, regarding preferred place of care and death.

The impact can go beyond the individual patient, with

symptoms significantly impacting on family and carers. People

can feel very helpless when looking after someone experi-

encing significant breathlessness and panic attacks. Night

times can be particularly difficult with fewer healthcare pro-

fessionals to call upon, often resulting in unwanted ambulance

calls and trips to hospital emergency departments.

When assessing breathlessness and its severity, it is

important to remember that, for the reasons already dis-

cussed, the severity of symptoms do not necessarily reflect

the disease status or severity overall. Symptoms can cause

distress but are often intermittent and short-lived.

Chronic Breathlessness Syndrome

Chronic breathlessness syndrome has recently been recog-

nised and defined as “the experience of breathlessness that

persists despite optimal treatment of the underlying path-

ophysiology and results in disability for the patient” [22].

Despite optimal treatment of the underlying cause,

breathlessness often persists at rest or on minimal exer-

tion, worsening over time as the underlying cause prog-

resses. Chronic breathlessness is under-reported by

patients and under-recognised by clinicians who focus on

the underlying disease or only see patients when acutely

unwell. It is therefore a silent and invisible problem [23], a

neglected symptom, with patients often wrongly assuming

there is nothing that can be done.

The Breathing Thinking Functioning

(BTF) Clinical Model [24]

The inconsistent relationship between pathology and

breathlessness perception explains why optimising disease

management alone does not guarantee good symptom

control [24].

The neurophysiology of breathlessness is complex with

thoughts and emotions contributing to breathlessness per-

ception. As already alluded to, the human reaction to the per-

ception of breathlessness can worsen the symptom. There is

no quick fix, or one-size fits-all simple interventions.

Complex symptoms require complex interventions and there

is good evidence emerging for the effectiveness of multi-fac-

eted non-pharmacological interventions such as pulmonary

rehabilitation and dedicated breathlessness services [25–29].

The Cambridge Breathlessness Intervention Service

(CBIS), a multidisciplinary home-based intervention of

proven cost-effectiveness, developed the BTF model. The

model advocates careful assessment in order to ascertain

the main drivers involved, enabling a more targeted

approach to developing an individualised evidence-based

management plan. The model is based on three predomi-

nant cognitive and behavioural reactions to breathlessness

Figure 1 The Breathing, Thinking, Functioning clinical model [24]. Reproduced with permission of the Cambridge Breathlessness Inter-

vention Service.

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164 Chapter 12

Step 3

Step 2

Palliative pharmacological

interventions e.g. opioids

Step 1

Non-pharmacological

interventions

Optimise disease treatment &

treat reversible causes

Figure 2 Dyspnoea Ladder (adapted from Rocker et al.) [30]. Step 1 Some of the specific scenarios related to malignancy and targeted

interventions for these have already been discussed. Similarly, there are well evidenced disease specific interventions for chronic respiratory

diseases such as COPD and ILD which will be discussed here. For patients with advanced disease and debilitating symptoms the risks/bur-

dens versus benefits need to be carefully considered for significant step one options, which can always be revisited if a patient’s situation is

stabilised by interventions in steps 2 and 3. Step 2 Non-pharmacological interventions should always be considered ahead of introducing

medications such as opioids. Some of these have been listed in the BTF section earlier and will be discussed in more detail next. In addition

to patient interventions it is important to consider education and support for family and carers in this step. Planning for how a breathless-

ness crisis/exacerbation will be managed is an extremely helpful intervention that is best done with patient and family/carers together. Step 3

Opioids are safe and effective. How to best use these and other medications to manage breathlessness is discussed next.

that, by causing vicious cycles, worsen and maintain the

symptom (see Figure 1 and Table 3).

These three vicious cycles combine to make a “vicious

daisy”. Patients and their families can often easily under-

stand aspects of the model. Vicious cycles can be broken

and there are evidence-based interventions that can be

helpful for each of these. Even just challenging the miscon-

ceptions driving a vicious cycle can be highly effective.

Although all three vicious cycles occur to a degree in each

breathless patient, in practice, one or two tend to predom-

inate. Focusing on those interventions which affect the

predominant cycle is recommended and can increase

adherence (see Table 4).

Managing Breathlessness

As for pain, a stepwise ladder approach should be used

when managing breathlessness (see Figure 2).

Non-Pharmacological Interventions

There are numerous non-pharmacological interventions

available for breathlessness, many of which are unknown

about or poorly understood by most healthcare professionals.

Table 4 The Breathing, Thinking, Functioning clinical model

– interventions [24].

Domain Interventions

Breathing Breathing techniques

Handheld fan

Airway clearance techniques

Inspiratory muscle training

Chest wall vibration

Non-invasive ventilation

Thinking Cognitive behavioural therapy (CBT)

Relaxation techniques

Mindfulness

Acupuncture

Functioning Pulmonary rehabilitation

Activity promotion

Walking aids

Pacing

Neuromuscular electrical stimulation

Table 3 The Breathing, Thinking, Functioning clinical

model – three domains [24].

Breathing domain Dysfunctional breathing patterns are

common. Breathless patients

experience a sense of “needing more

air” and so increase their respiratory

rate, using predominantly the upper

chest and accessory muscles, further

increasing the work of breathing and

intensifying breathlessness.

Thinking domain Breathlessness can cause fear and

anxiety which in turn can worsen the

perception of breathlessness. This can

easily lead to panic attacks which in

turn can increase the respiratory rate

and cause muscle tension, further

increasing the work of breathing and

the feeling of breathlessness.

Functioning domain Breathlessness leads to inactivity

which leads to muscle

deconditioning which increases the

demand on the respiratory system,

and worsens breathlessness further.

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The Management of Respiratory Symptoms and Advanced Chronic Obstructive Pulmonary Disease 165

The BTF model can help clinicians identify which interven-

tions are most suitable for an individual patient. Dedicated

Breathlessness Intervention Services deliver some interven-

tions, often predominantly by physiotherapists and

occupational therapists but others will be available elsewhere.

Take the time to identify what services are available to you

locally. Some interventions are simple and can be delivered

by anyone. Non-pharmacological measures can help to

empower patients at a time when the majority of their

symptom management is prescriptive [31].

Breathing Techniques

A very simple technique that anyone can advise patients on

is to focus on the exhale or “out breath”. Breathless patients

experience a sense of “needing more air” and so tend to

focus on the inhale or “in breath”, taking small fast breaths

from the upper chest which actually tends to make the

situation worse. Ask patients to forget about the in-breath

and instead focus on long slow breaths out. Reassure them

that in doing this an adequate in breath will follow auto-

matically. Some people find it helpful to visualise or focus

on a rectangle when doing this (see Figure 3) [32].

A physiotherapist can teach additional techniques and

include breathing control, pursed lips breathing, exhala-

tion on effort (blow as you go!), relaxed slower deeper

breathing, and paced breathing. Energy conservation

strategies and walking aids can support activities of daily

living. Inspiratory muscle training may help some patients.

Airway clearance techniques can also be used for those

that need them. Positioning techniques include fixing the

shoulder girdle passively and forward lean postures for

example, elbows resting on knees or a table when seated,

or simply sitting more upright in bed. A physiotherapist

will be able to select and tailor these techniques to an

individual, taking into account the cause of their breath-

lessness [33].

Fan Therapy

A cool breeze across the face can help reduce the sensation

of breathlessness. Patients often recognise this themselves

when they seek to open windows and doors. The beneficial

effects of oxygen therapy may be in part due to this cool

breeze. A cool breeze acts on sensory neuron receptors

(Transient Receptor Potential Melastatin 8 – TRPM8 –

channels) on/in the nose, mouth, and facial skin and can

lead to reduced breathlessness. In terms of effective posi-

tioning, portability and control, a handheld fan is recom-

mended and there is evidence for its effectiveness [34–39].

A handheld fan can improve recovery time from exer-

tion-induced breathlessness [40], which can then enable

people to be more active.

If you are not in a position to give patients a handheld

fan then keep one to hand in order to demonstrate its use

(see Table 5). Direct patients to on line resources (e.g.

Cambridge Breathlessness Intervention Service) [41] or

give written information, and let them know where they

can purchase a fan. All of these measures will increase

uptake of use.

Use of a cool moist flannel is a suitable alternative for

those who don’t tolerate fan therapy or where it is

contraindicated.

Cognitive Behavioural Therapy (CBT)

CBT is an evidence-based, patient-centred, individualised,

structured psychological intervention, which aims to

understand a patient’s current difficulties by exploring the

links between their situation, physical symptoms, thoughts,

emotions, and behaviour. Patients are encouraged to iden-

tify unhelpful thinking or behaviour driving vicious cycles

and to find ways to break these and improve their quality

of life. It is a very practical form of talking therapy, where a

self-management plan is developed and progress moni-

tored. Common misconceptions can be challenged for

example, “When I am breathless I need oxygen”, “When I

feel breathless it means my disease is getting worse and I

am going to die soon”, “Physical exertion makes me feel

breathless and is therefore dangerous”.

Table 5 Advice for patients using a handheld fan.

Advice for patients using a handheld fan

• Hold the fan about six inches (15cm) from your face or the

distance you find most helpful.

• Aim the cool air at your cheeks, nose, and mouth.

• Either hold the fan still or move it around slightly, whatever

you find most helpful.

From Bringing Breathlessness into View – a guide to living

well with breathlessness (hyms.ac.uk) [42]

Figure 3 Breathe a rectangle. Reproduced with permission of the

British Lung Foundation.

https://t.me/med1917

166 Chapter 12

Evidence suggests that healthcare professionals can

learn and deliver CBT techniques as brief interventions,

which can improve symptoms of anxiety and breathless-

ness and reduce Emergency Department (ED) attendances

and hospital admissions [43–45].

Relaxation and Mindfulness

Breathlessness can often cause anxiety and feelings of

panic which in turn make the breathlessness worse.

Relaxation is a skill that can be taught, learnt, practiced,

and improved, and there are numerous techniques avail-

able. Patients can be guided through a relaxation exercise

in person or via a Compact Disc or app. Family members

can read from scripts. Some people find more specific

interventions such as complementary therapy (massage,

aromatherapy, reflexology, reiki), hypnotherapy [46],

acupuncture [47], or autogenic therapy helpful and these

can sometimes be available through hospice services.

Mindfulness meditation is now very popular and easily

accessed via apps such as Headspace and Calm. All of

these interventions help people focus on the present

moment rather than the past/future and on the body or

a visualisation rather than on thoughts and feelings.

While some techniques encourage a focus on the breath,

this is not essential and indeed an alternative focus for

example, on various parts of the body via a “body scan”

may be preferable for those affected by breathlessness.

Pulmonary Rehabilitation (PR)

PR is an exercise and education programme for people

with lung disease who experience symptoms of breathless-

ness. A course usually lasts six to eight weeks, with two

sessions of around two hours each week. Courses are

delivered in small groups by a multidisciplinary team and

may be held in local hospitals, community halls, leisure

centres, and health centres. Evidence shows that accessing

PR improves people’s ability to walk further and helps

them feel less tired and breathless when carrying out

day-to-day activities. 90% of patients who complete a PR

programme have higher activity and exercise levels, and

report an improved quality of life. PR can improve a

patient’s ability to self-manage and can reduce unplanned

hospital admissions [48]. Some services are able to deliver

lower intensity programmes in a patient’s own home.

While many patients may initially appear too unwell to

benefit from pulmonary rehabilitation, if deconditioning

and “functioning” is their main vicious cycle then PR

could make a big difference. Needing oxygen therapy isn’t

a contraindication – patients can take part using portable

oxygen. PR is usually for those with chronic lung condi-

tions rather than malignancy.

Support and Activity Groups

For those unable to manage PR or who find peer support

particularly beneficial there are a range of options avail-

able. The British Lung Foundation run local Breath Easy

support groups and many localities offer similar via NHS

or hospice services for example, the FAB (Fatigue, anxiety

and breathlessness) Programme [49] and Singing for

Health [50].

Pharmacological Management

Several palliative pharmacological interventions are avail-

able to help with breathlessness, and associated anxiety/

panic, regardless of the underlying cause. They are best

reserved for use in advanced disease where symptoms have

not been optimally managed by disease specific treatments

and non-pharmacological interventions, and when breath-

lessness occurs at rest or on minimal exertion (e.g. talking,

eating).

Opioids

With evidence available to support their use, opioids are

the drug of choice in this context. Opioids are safe and

effective in the palliation of breathlessness due to a

variety of malignant and non-malignant causes and can

improve overall quality of life [51–55]. Their mechanism

of action is not fully understood however they appear to

reduce respiratory rate by acting on brainstem respiratory

control, and depress anticipatory activity in the amygdala

and hippocampus reducing “breathlessness unpleasant-

ness” [56].

The best evidence is for morphine (oral or parenteral)

and a variety of opioids appear to be effective in practice.

The dose required tends to be lower than used for pain

with doses as low as 5 mg oral morphine per day confer-

ring some benefit, and doses greater than 20–30 mg oral

morphine per day rarely needed [51, 55]. Opioids are well

tolerated when used appropriately, and anticipated side

effects explained and addressed proactively. Nebulised opi-

oids are not recommended.

Opioids for breathlessness, as for pain, are best given

regularly in order to achieve a steady state. The simplest

way of doing this is to use a modified release (MR) prepa-

ration but in some circumstances an immediate release

(IR) preparation prescribed regularly may be preferable

(see Table 6).

It is possible that opioids can, in addition to improving

breathlessness and quality of life, improve exercise

capacity. Certainly when assessing if the introduction of

regular opioids has been successful it is helpful to include

https://t.me/med1917

The Management of Respiratory Symptoms and Advanced Chronic Obstructive Pulmonary Disease 167

this as a measure in very practical terms for example,

ability to walk upstairs, do housework etc. Using as

required (PRN) opioids pre activity is an option but is not

yet well researched. In practice, exertional breathlessness

in patients requiring opioids is likely to occur many times

per day and so regular dosing is likely to be more practical

and effective. Using prn opioids for exertional breathless-

ness is controversial. Most episodes of acute-on-chronic

breathlessness take less than half an hour to recover and so

are more amenable to non-pharmacological than drug

interventions followed by titration of regular opioids if

occurring frequently.

Equivalent doses can be used in a syringe pump to

deliver a continuous subcutaneous infusion (CSCI) over

24 hours. Parenteral morphine is two times stronger than

oral so a suitable start dose might be 5 mg/24 h.

Morphine is the gold standard opioid however a switch

to an alternative opioid can be considered if morphine is

poorly tolerated for example, to oxycodone.

Some people with breathlessness don’t respond to opi-

oids in which case they should be discontinued. Opioids

can also be reduced/discontinued if someone responds

very well and you are able to step down the treatment

ladder and gain more benefit from non-pharmacological

approaches for example, exercise to tackle deconditioning.

Breathlessness in the last days of life can be very dis-

tressing. Larger doses of morphine may be required in this

situation for example, 2.5–5 mg SC injection PRN and

5–10 mg by CSCI over 24 hours, titrated to effect.

Benzodiazepines

Although there is still a lack of evidence to support their

use, in practice benzodiazepines are used widely and

appear to offer some benefit in certain circumstances.

They are particularly helpful for managing the anxiety and

panic often associated with breathlessness, especially in a

crisis situation which can lead to unnecessary ambulance

call outs/emergency hospital visits.

Shorter acting benzodiazepines (midazolam, lorazepam)

are recommended over longer acting options (diazepam).

For example, Lorazepam 500 mcg sublingual PRN

Midazolam 2.5 mg SC injection PRN

In order to administer lorazepam sublingually (for

quicker onset of action) prescribe the Genus brand (half a

1 mg tablet).

Midazolam can be used in a syringe driver for example,

5–10 mg/24h.

For breathlessness in the last days of life it can be partic-

ularly beneficial to use a combination of morphine and

midazolam [57].

Antidepressants

Antidepressants are not a treatment for breathlessness per

se however; many people experiencing breathlessness do

experience associated anxiety and panic (and depression).

If prognosis is sufficient (months), these symptoms can be

best managed with antidepressants (rather than benzodi-

azepines) if non-pharmacological interventions alone are

insufficient. Underlying anxiety and depression can

Table 6 A practical guide to using oral morphine for breathlessness.

Option 1 Option 2 For All Patients

Start with 10 mg modified release

morphine PO per day.

e.g. MST Continus 5 mg BD

Use of MST allows for a low start dose and

further titration. Review effectiveness

weekly and titrate as needed to a

maximum of 15 mg BD (30 mg/24 h).

Some localities use Zomorph in preference

to MST however this offers less flexible

dosing as a 5 mg preparation is

unavailable. Zomorph 10 mg BD can be

considered however the start dose may be

too much for some patients so if MST is

unavailable it may be best to start with

option 2.

Consider this option if there is significant renal/hepatic

impairment, risk of renal function changing

unpredictably/rapidly, or in any other situation where

lower/more easily adjustable doses and slower titration

may be desirable.

Start with liquid morphine IR (2 mg/ml strength) 1

mg (0.5 ml) BD PO.

Increase after 48 h to 1 mg QDS PO (e.g. 8 am, 12 pm,

4 pm, 8 pm).

Then increase as needed weekly to 2 mg QDS, then 3

mg qds, then 4 mg QDS, then 5 mg QDS PO etc. (max

28 mg/24 h)

Issue 1 ml oral syringes to measure doses and show the

patient/carer how to do this.

Consider switching to a MR preparation once an

effective dose is reached.

Give written information

about opioids and the dosing

schedule.

Explain that the potential

initial side effects of

drowsiness and nausea are

generally short-lived (a few

days max). Prescribe an

antiemetic in case of need if

there is concern e.g.

haloperidol 500 mcg or

metoclopramide 10 mg PRN.

Explain that opioids can cause

constipation and prescribe a

laxative e.g. senna 15 mg OD

to be titrated as needed.

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