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Symptom control and clinical scenarios in palliative care 

Symptom control and clinical scenarios in palliative care
Symptom control and clinical scenarios in palliative care

Max Watson

, Karen O’Reilly

, and Chantal Simon

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Subscriber: null; date: 13 December 2018

A–Z index of palliative care symptoms/scenarios


Page reference



The last 48h. –  [link]




Anorexia and cachexia –  [link]




Psychiatric problems –  [link]


Other GI problems –  [link]


Weakness, fatigue, and drowsiness –  [link]


Back pain

Spinal cord compression –  [link] and [link]

Bed sores

Wound care –  [link]

Bladder pain


Bone pain





Anorexia and cachexia –  [link]


Incontinence –  [link]






Stridor and cough –  [link]


Death rattle

The last 48h. –  [link]

Deep vein thrombosis

Venous thromboembolism –  [link]


Psychiatric problems –  [link]

Diabetes mellitus



Other GI problems –  [link]


Mouth problems –  [link]


General debility –  [link]

Dry mouth

Mouth problems –  [link]


Neurological and orthopaedic problems –  [link]






Bladder pain –  [link]


Erectile dysfunction

Sexual health –  [link]


General debility –  [link]

Fever and sweating

General debility –  [link]


Gut: other GI problems –  [link]

Urinary: urinary incontinence –  [link]


Emergencies –  [link]


Neurological and orthopaedic problems –  [link]

Fungating wounds

Wound care –  [link]


Gastro-intestinal bleeding



GI bleeding –  [link]






Massive bleeding –  [link]


Mouth problems –  [link]




ICP (raised)

Neurological and orthopaedic problems –  [link]


Sexual health –  [link]







Liver capsule pain





Mouth problems


Myoclonic twitching

Neurological and orthopaedic problems –  [link]

Nausea and vomiting


Nerve pain

[link] and [link]

Noisy breathing

Death rattle –  [link]


Obstruction (bowel)

Other GI problems –  [link]

Pressure area care

Wound care –  [link]

Pulmonary embolus

Venous thromboembolism –  [link]

Reduced libido

Sexual health –  [link]


Overflow –  [link]


Sexual health


Sore mouth

Mouth problems –  [link]

Spinal cord compression

Neurological and orthopaedic problems –  [link]

Stoma care

Patients with ostomies –  [link]



Superior vena cava obstruction

Breathlessness –  [link]


General debility –  [link]

Syringe drivers

[link] and [link]


Other GI problems –  [link]

Terminal phase

The last 48h. –  [link]

Terminal restlessness

The last 48h. –  [link]


Vaginal soreness

Sexual health –  [link]


Nausea and vomiting –  [link]


General debility –  [link]

Wound care



Some acute events in advanced disease must be treated as an emergency. While unnecessary hospital admission may cause distress for patients/ carers, missed emergency treatment of reversible conditions can be disastrous.

Questions to ask when managing emergencies:

  • What is the problem?

  • Can it be reversed?

  • What effect will reversal have on the patient’s overall condition?

  • Could active treatment maintain/improve this patient’s quality of life?

  • What do you think is the ‘right’thing to do?

  • What does the patient want?

  • What do the carers want?

Table 5.1 Emergencies in advanced disease


Emergency management


Depending on the general state of the patient, make a decision whether to treat the hypercalcaemia or not.

If a decision is made not to treat: provide symptom control and do not check the serum calcium again.

Active treatment: depends on level of symptoms and calcium:

  • Asymptomatic patient with corrected calcium <3mmol/l – monitor.

  • Symptomatic and/or corrected calcium > 3mmol/l – arrange treatment with IV fluids/bisphosphonates via oncologist/palliative care team as an emergency.

Bone fracture

Give analgesia.

Unless in a terminal state, confirm the fracture on X-ray and refer to orthopaedics or radiotherapy urgently for consideration of fixation (long bones, wrist, neck of femur) and/or radiotherapy (rib fractures, vertebral fractures).

Massive bleeding

Haematuria –  [link]

Haemoptysis –  [link]

GI bleeding –  [link]

Wounds –  [link]

Make a decision whether the cause of the bleed is treatable or a terminal event.

Active treatment: Call for emergency ambulance support. Lie flat. Gain IV access and give IV fluids if available.

No active treatment: Stay with the patient, give sedative medication (e.g. midazolam 10–40mg s/cut or IM or diazepam 10–20mg pr). Support the carers. Consider diamorphine 2–10mg s/cut if the patient is in pain.

Acute breathlessness[link]

Consider reversible causes: anaemia, pneumonia, pleural effusion, exacerbation of COPD, heart failure, PE, superior vena cava obstruction.

Palliative measures: morphine 2.5–5mg prn (or ↑ background opioid dose by 30–50%) or consider diamorphine/morphine syringe driver with midazolam 5–10mg over 24h.

Spinal cord compression[link]

Presents with back pain worse on movement and neurological symptoms e.g. constipation, weak legs, incontinence of urine.

Prompt treatment (<24–48h. from 1st neurological symptoms) is needed if there is any hope of restoring function. Treat with oral dexamethasone 16mg/d. and refer urgently for radiotherapy unless in final stages of disease.


Breakthrough of pre-existing opioid-responsive pain: give a stat dose of opioid = 1/6th total opioid dose in the last 24h. Acts in <30min. Repeat if ineffective. Reassess cause of pain and consider alternative analgesic approaches.

Opiate overdose[link]

If respiratory rate ≥ 8/min. and patient is easily rousable and not cyanosed – review if condition worsens. Consider reducing or omitting the next regular dose of opioid.

If respiratory rate < 8/min., and/or the patient is barely rousable/unconscious and/or cyanosed, dilute a standard ampoule containing naloxone 400mcgm to 10ml with sodium chloride 0.9%. Administer 2ml (80mcg) IV every 2min. until respiratory status is satisfactory to a maximum of 10mg naloxone. If respiratory function still doesn’t improve, question diagnosis.

Symptom control and clinical scenarios in palliative careFurther boluses may be necessary once respiratory function improves as naloxone is shorter acting than morphine.


Ensure the airway is clear and turn the patient into the recovery position. Prevent onlookers from restraining the fitting patient.

Treat fitting with diazepam 5–10mg IV or pr.

If >1 seizure without the patient regaining consciousness or fitting continues >20min. repeat diazepam every 15min. until fitting is controlled. Unless in a very terminal condition, admit.

Support carers.

Consider checking BM. Depending on clinical state, consider referral for further investigation if first fit.

Terminal restlessness/ agitation[link]

Causes: Pain/discomfort, myoclonic jerks 2° to opioid toxicity, biochemical causes (e.g. ↑ Ca2+, uraemia), psychological/spiritual distress, full bladder or rectum.


  • Treat reversible causes e.g. catheterization for retention, hyoscine to dry up secretions.

  • If still restless, treat with a sedative. This does NOT shorten life but makes the patient and any relatives in attendance more comfortable.

Suitable drugs: haloperidol 1–3mg tds po; diazepam 2–10mg tds po, midazolam (10–100mg/24h. via syringe driver or 5mg stat) or levomepromazine (12.5–50mg/24h. via syringe driver or 6.25mg stat).

Pain control

Pain control is the cornerstone of palliative care. Cancer pain is multifactorial – be aware of physical and psychological factors.

Principles of pain control:


Pain-relieving drugs:


Summary of management of specific types of pain:

Table 5.2

Table 5.2 Management of specific types of pain

Type of pain


Bone pain

  • Try NSAIDs and/or strong opioids

  • Consider referral for palliative radiotherapy, strontium treatment (prostate cancer) or IV bisphosphonates (↓ pain in myeloma, breast and prostate cancer)

  • Refer to orthopaedics if any lytic metastases at risk of fracture, for consideration of pinning

Abdominal pain

  • Constipation is the commonest cause –  [link]

  • Colic – try loperamide 2–4mg qds po, hyoscine hydrobromide 300mcgm tds s/ling, or Hyoscine butylbromide (Buscopan®) 20–60mg/24h. via syringe driver.

  • Liver capsule pain – use dexamethasone 4–8mg/d. Titrate dose ↓ to the minimum that controls pain. Alternatively try an NSAID + PPI cover.

  • Gastric distention – may be helped by an antacid ± an antifoaming agent (e.g. Asilone®). Alternatively a prokinetic may help e.g. metoclopramide or domperidone 10mg tds before meals.

  • Upper GI tumour – often neuropathic element of pain—if not controlled – refer to palliative care team

  • Consider drug causes – NSAIDs are a common iatrogenic cause

  • Acute/subacute obstruction –  [link]

Neuropathic pain

  • Often burning/shooting and may not respond to simple analgesia.

  • Titrate to the maximum tolerated dose of opioid e.g. tramadol, oxycodone

  • If inadequate, add a nerve pain killer e.g. amitriptyline 10–25mg nocte increasing as needed every 2wk. to 75–150mg. Alternatives include carbamazepine, gabapentin, pregabalin, phenytoin, sodium valproate and clonazepam

  • If pain is due to nerve compression due to tumour, dexamethasone 4–8mg od may help.

  • Other options: TENS; acupuncture; nerve block

Rectal pain

  • Topical drugs e.g. rectal steroids

  • Tricyclic antidepressants e.g. amitriptyline 10–100mg nocte

  • Anal spasms – glyceryl trinitrate ointment 0.1–0.2% bd

  • Referral for local radiotherapy

Muscle pain

  • Paracetamol and/or NSAIDs

  • Muscle relaxants e.g. diazepam 5–10mg od, baclofen 5–10mg tds, dantrolene 25mg od increasing at weekly intervals to 75mg tds

  • Physiotherapy, aromatherapy, relaxation, heat pads

Bladder pain/spasm

  • Treat reversible causes. ↑ fluids. Toilet regularly

  • Try tolterodine 2mg bd, propiverine 15mg od/bd/tds, or trospium 20mg bd

  • Amitriptyline 10–75mg nocte is often effective

  • If catheterized – try instilling 20ml of intravesical bupivacaine 0.25% for 15min. tds or oxybutynin 5ml in 30ml od/bd/tds

  • NSAIDs can also be useful

  • Steroids e.g. dexamethasone 4–8mg od may ↓ tumour-related bladder inflammation

  • In the terminal situation, hyoscine butylbromide 60–120mg/24h. or glycopyrronium 0.4–0.8mg/24h. s/cut can be helpful (higher doses can be given under specialist supervision)

Pain of short duration

  • e.g. dressing changes – try a short-acting opioid e.g. fentanyl citrate 200mcgm lozenge sucked for 15min prior to the procedure or a breakthrough dose of oral morphine 20min. prior to the procedure.

Back pain and spinal cord compression:

Spinal cord compression occurs in 5% of patients with cancer ( [link]). 90% present with back pain – often preceding any neurological symptoms. Prompt treatment is needed if there is any hope of restoring function.


  • Often back pain, worse on movement, appears before neurology.

  • Neurological symptoms/signs can be non-specific – constipation, weak legs, urinary hesitancy.

  • Lesions above L1 (lower end of spinal cord) may produce UMN signs (e.g. ↑ tone and reflexes) and a sensory level.

  • Lesions below L1 may produce LMN signs (↓ tone & reflexes) and perianal numbness (cauda equina syndrome).



  1. 1.

    Is there a reasonable likelihood of spinal cord compression?

    Maintain a high level of suspicion in all cancer patients who complain of back pain – especially those with known bony metastases or tumours likely to metastasize to bone (e.g. myeloma, and cancers of the prostate, breast and bronchus).

  2. 2.

    Would this patient benefit from emergency investigation and treatment?

    Treat with oral dexamethasone 16mg/d. and refer as an emergency for surgery/radiotherapy unless in final stages of disease.

Bladder pain:

Discomfort in the suprapubic area ± dysuria, frequency, nocturia, urgency and/or urine retention/incontinence.

Causes of bladder pain:

  • UTI

    – bacterial (including TB if immunocompromized), fungal.

  • Tumour

    – bladder, urethra, pelvic mass 2° to other tumour e.g. bowel, ovary.

  • Treatment related

    e.g. 2° to radiotherapy, chemotherapy or immunotherapy, 2° to a blocked or infected catheter.

  • Calculus

    – bladder stones.

  • Bladder irritability/spasm

    – may be idiopathic or due to contraction around the balloon of an indwelling catheter, blood clots, tumour, or infection.

  • Retention of urine

    – check bladder is not enlarged

In addition, dysuria and/or ↑ frequency may be caused by genital herpes, urethritis, and/or vaginitis.


Where possible treat the cause. In all cases, ↑ fluids and encourage regular toileting. Drug options – Table 5.2.

Use of steroids

GPs are often reluctant to use steroids in palliative care situations, partly due to unfamiliarity with their use, and partly due to worries about initiation and monitoring within a primary care situation.

Use and administration:

Table 5.3

Table 5.3 Use of steroids in palliative care

Indication for use

Daily dose of dexamethasone



Pain (where caused by tumoural oedema)

Improvement in well-being/mood


Nerve compression pain

Liver capsule pain


Bowel obstruction

Post-radiation inflammation


Intracranial pressure

Superior vena cava obstruction

Carcinomatosa lymphangitis

Spinal cord compression


↑ dose for patients on liver-enzyme-inducing drugs e.g. phenytoin, carbamazepine or phenobarbital

  • Give initially for a 1wk. trial and stop if not effective.

  • Often started at high dose to suppress disease process and stepped down with improvement.

  • Use the minimum dose that controls symptoms for maintenance.

  • Where possible, prescribe oral steroids as a single dose in the morning (after breakfast) to ↓ circadian rhythm disturbance.

  • Dexamethasone is the corticosteroid of choice in advanced disease because of its reduced tablet burden on patients.

  • Prednisolone is most commonly used to treat chronic disease e.g. asthma, inflammatory bowel disease or rheumatoid arthritis.

  • Supply with a ‘steroid card’ .

  • In the terminal care situation, inability to swallow oral medication is often the factor which leads to stopping steroids. Consider use of soluble preparations. Weigh up the burden of continuing against the risks – continue s/cut steroids only if there is a clear ongoing benefit.

Side effects:

Doses of dexamethasone >4mg od are likely to result in significant side effects after a few weeks. Doses ≤4mg od are usually well tolerated in patients with a prognosis of months.

  • ↑BP

  • Osteoporosis ± fracture – long-term use or recurrent short courses

  • Proximal muscle wasting (worse with dexamethasone than prednisolone – consider switching if a problem)

  • Euphoria

  • Paranoid states or depression – especially if previous psychiatric disorder

  • Peptic ulceration – ↑ risk if also taking NSAIDs. Soluble or enteric coated (EC) versions may ↓ risk. Consider protecting gastric mucosa with a PPI – especially if taking a NSAID concurrently

  • Suppression of clinical signs—may allow diseases e.g. septicaemia to reach advanced stage before being recognized

  • Spread of infection e.g. chickenpox, oral thrush

  • Hyperglycaemia in non-diabetic patients (consider weekly urine monitoring for glucose followed up by fasting blood glucose if positive) and worsening of diabetic control in diabetic patients

  • Cushing’s syndrome – moon face, striae, and acne

  • Adrenal atrophy – can persist for years after stopping long-term steroids – illness or surgical emergencies may require steroid supplements

  • Frail skin, which bruises easily

  • Na+ and water retention; K+ loss

Symptom control and clinical scenarios in palliative careIf patients are expected to be on oral steroids for>3mo. (e.g. cerebral tumour where prognosis is uncertain, or chronic inflammatory disesase e.g. rheumatoid arthritis), consider osteoporosis prophylaxis with an oral bisphosphonate.

Withdrawal of steroids:

Stop abruptly if the patient has received treatment for ≤3wk. and is not included in the patient groups described below.

Withdraw gradually if the patient has:

  • Recently had repeated steroid courses (particularly if taken for >3wk.)

  • Taken a short course <1y. after stopping long-term therapy

  • Other possible causes of adrenal suppression

  • Received >4mg dexamethasone or >40mg prednisolone per day

  • Been given repeat doses in the evening

  • Received treatment with steroids for >3wk.

During corticosteroid withdrawal, ↓ dose rapidly to physiological levels (∼ prednisolone 7.5mg od or 4mg dexamethasone od) – thereafter ↓ more slowly. Assess during withdrawal to ensure symptoms don’t recur (or treat symptoms if steroid withdrawal in the terminal days of disease).

GP Notes: Steroid cards

Should be carried at all times by patients on oral or high doses of inhaled steroids. The card:

  • Informs other practitioners your patient is on steroids and

  • Gives the patient advice on use of steroids and risk of infection

Obtaining steroid cards:

  • England and Wales: Department of Health ☎ 08701 555 455

  • Scotland: Banner Business Supplies ☎ 01506 448 440

General debility

Weakness, fatigue and drowsiness:

Asthenia is characterized by fatigue or easy tiring and ↓ sustainability of performance, generalized weakness resulting in ↓ ability to initiate movement, and mental fatigue with poor concentration, impaired memory and emotional lability. It is almost a universal symptom.

Reversible causes:

  • Drugs – opioids, benzodiazepines, steroids (proximal muscle weakness), diuretics (dehydration and biochemical abnormalities), antihypertensives (postural hypotension)

  • Emotional problems – depression, anxiety, fear, apathy

  • Hypercalcaemia

  • Other biochemical abnormalities – DM, electrolyte disturbance, uraemia, liver disease, thyroid dysfunction

  • Anaemia ( [link])

  • Poor nutrition

  • Infection

  • Prolonged bed rest

  • Raised intracranial pressure (drowsiness only)


  • Treat reversible causes.

  • Encourage ↑ gentle exercise

  • If drowsiness and fatigue persist consider a trial of dexamethasone 4–6mg/d. or an antidepressant. Although steroids make muscle wasting worse, they may improve general fatigue and improve mobility.

  • Psychological support of patients and carers – empathy, explanation.

  • Physical support – referral to physiotherapist, review of aids and appliances, review of home layout (possibly with referral to OT), review of home care arrangements.

  • Advice on modification of lifestyle.

Fever and sweating:

Sweats and fevers can occur alone or together. As well as interrupting sleep, they are very uncomfortable.


Box 5.1


Direct treatment at the cause, wherever possible.

  • Nursing care – regular sponging, washing, fanning, encourage oral fluids.

  • Paracetamol 1g qds prn – may not be effective for neoplastic fevers.

  • Alternatives include:

    • NSAIDs e.g. ibuprofen 400mg tds.

    • Ondansetron 8mg bd.

    • SSRIs e.g. fluoxetine 20mg od (for sweats).

    • SNRIs e.g. venlafaxine SR 75mg od (for hormone related sweats).

    • Megestrol 20mg od/bd (for hot flushes).

    • Thalidomide 100–200mg nocte – for neoplastic fever (capsules must not be handled directly by women of child-bearing age – specialist prescription only).

    • High-dose steroids – sweating in chronic lymphatic leukaemia.

    • Cimetidine 200–800mg nocte – sweating related to opioid use.

    • Aspirin 300–600mg qds.

    • Antimuscarinics e.g. oxybutynin.


Itching is a common and uncomfortable problem for many terminally ill patients. Causes include:

  • Skin disease—e.g. eczema, psoriasis, flea bites, scabies

  • Allergy—e.g. urticaria, contact dermatitis

  • Haematological disease—iron deficiency, lymphoma, polycythaemia

  • Liver disease—biliary obstruction

  • Chronic renal failure

  • Thyroid disease—usually hypothyroidism.


Try to find the cause and treat where possible.

General measures:

  • Keep skin well moisturized—use bath/shower emollients, apply moisturizers frequently (e.g. aqueous cream) use as soap substitutes, avoid detergents and soaps.

  • Avoid exacerbating factors e.g. keep bath water cool, wear cotton, avoid prickly clothing, clip nails short.

  • Try soothing preparations e.g. adding bicarbonate of soda to the bath, calamine lotion, moisturizers with anti-itch agents in them.

Drug measures:


  • Antihistamines—sedating antihistamines (e.g. chlorphenamine 4mg tds) tend to be more effective than non-sedating ones

  • Sedatives e.g. diazepam 2mg tds or chlorpromazine 10–25mg tds/qds

  • Cimetidine 400mg bd (especially for lymphoma)

  • Paroxetine 20mg od for paraneoplastic or morphine itch.

Obstructive jaundice:

Consider referral for stent. Otherwise cholestyramine 6–8g/d., aluminium hydroxide mixture 10–15ml tds/qds or ondansetron 8mg od may be helpful.

Symptom control and clinical scenarios in palliative careIf simple measures aren’t succeeding, refer to palliative care or dermatology for advice.

Anorexia and cachexia

Anorexia is the absence or loss of appetite for food. Cachexia is a condition of profound weight loss and catabolic loss of muscle and adipose tissue – usually compounded by a chronic ↓ nutritional intake. Anorexia and/or cachexia occurs in ∼ 70% of patients with advanced cancer.

Primary causes:

Anorexia cachexia syndrome is a multifactorial syndrome caused by disease and autoimmune responses to chronic illness. It is often characterized by muscle loss and a raised CRP and lowered albumin. Treatment options are limited though trials are currently underway.

Reversible secondary causes:

  • Dysphagia e.g. oral thrush, sore/dry mouth, upper GI mass (may be treated with a bypass procedure, radiotherapy and/or chemotherapy)

  • Nausea or vomiting

  • Constipation

  • Pain

  • Anxiety or depression

  • Physical inability to prepare or eat meals (e.g. unable to cook, poor fitting teeth)


  • Treat reversible causes where possible

  • ↓ psychological distress and treat depression

  • Address physical barriers to eating e.g. meals on wheels

  • Consider referral to a dietician for advice on diet

  • Advise small, appetising meals frequently in comfortable surroundings

Drugs that may be helpful:

  • Alcohol pre-meals.

  • Metoclopramide or domperidone 10mg tds pre-meals – to prevent feeling of satiety caused by gastric stasis.

  • Trials of dexamethasone 2–4mg od or prednisolone 15–30mg od – ↑ appetite and well-being in 80% but the effect is usually short-lived. Use the minimum effective dose. If there is no response after 7–10d. stop.

  • ProgestogensC e.g. megesterol acetate 80–160mg od or medroxyprogesterone acetate 400mg od, ↑ appetite in 80%—onset of effect is slower than with corticosteroids but lasts longer. Side effects include oedema, ↑BP and insomnia.

Nutritional support:

Although nutritional support in the form of nasogastric or IV feeding may improve weight and well-being in the short term, it can only be justified as a short-term measure prior to or after definitive treatment e.g. preparing for/recovering from surgery or awaiting chemotherapy.

Hydration in the dying patient:



Don’t check for anaemia if there is no intention to treat.

  • If Hb <10g/dl and symptomatic:

    treat any reversible cause (e.g. iron deficiency, GI bleeding 2° to NSAIDs). Consider transfusion.

  • If transfused:

    Record whether any benefit is derived (as if not further transfusions are futile) and duration of benefit (if <3 wk. – repeat transfusions are impractical). Monitor for return of symptoms, repeat FBC and arrange repeat transfusion as needed.

GP Notes: Food supplements on prescription

In certain conditions, some foods have characteristics of drugs and the Advisory Committee on Borderline Substances (ACBS) advises as to the circumstances in which such substances may be regarded as drugs.

Many food supplements are available for treatment of dysphagia, malabsorption and disease-related malnutrition e.g.

  • Abbott – Ensure®, Enrich®, Enlive®, Formance®

  • Nutricia clinical – Forticreme®, Fortifresh®, Fortijuce®, Fortimel®, Fortisip®, Polycal®

  • Fresenius Kabi – Fresubin®, Calshake®

  • SHS – Maxijul®, Duocal®, Duobar®

  • Novartis – Resource®, Isosource®, Novasource®

  • Nestlé – Clinutren®, Caloreen®

A full list is available in the BNF – Appendix 7 

Endorse prescriptions ‘ACBS’.

Symptom control and clinical scenarios in palliative careIn the presence of primary anorexia cachexia syndrome, which is essentially a metabolic problem, these food supplements have little role to play. Unfortunately GPs come under pressure to prescribe food supplements from the point at which cancer is diagonised, even in patients who are eating well. Try to resist prescribing unless you have good reason.

Further information:


Berenstein and Ortiz Megestrol acetate for the treatment of anorexia-cachexia syndrome 2005.

European Journal of Palliative Care

Macdonald N Anorexia-cachexia syndrome (2005). 12(2) Supplement 8–14.

Mouth problems

Mouth problems affect up to 60% of patients with advanced cancer and can impact greatly on quality of life – both physically and psychologically. The majority of mouth problems seen in palliative care are related to a ↓ in saliva secretion and/or poor oral hygiene.

Risk factors:

  • ↓ oral intake

  • Debility and ↓ ability to perform self-care

  • Dry mouth (due to medication, radiotherapy, anxiety, mouth breathing, oxygen therapy)

  • Dehydration

  • Weight loss (results in poor-fitting dentures)

  • Anaemia (iron deficiency anaemia causes angular stomatitis and glossitis)

  • Vitamin C deficiency (causes gingivitis and bleeding gums)

  • Local irradiation

  • Chemotherapy

  • Local tumour


Assess regularly for symptoms/signs of mouth problems e.g. altered taste, pain, and/or mouth ulcers, dry mouth, halitosis, thrush or dental problems. Consider checking FBC for iron deficiency anaemia.

General measures:

  • Keep mouth moist – encourage regular sips of fluids and/or rinsing

  • Clean teeth/dentures regularly – if the patient is unable to do it for him/herself instruct carers on mouth care

  • Gently clean the tongue with a soft toothbrush or sponge

  • Apply moisturizing cream or petroleum jelly (Vaseline®) to lips

  • Review medication making the mouth sore or dry

  • Mouthwashes – saline 0.9% mouthwashes help removal of oral debris and are soothing

  • Consider referral to the DN or palliative care home nursing team for advice

  • Consider referral to the dentist, ENT or palliative care if symptoms are not settling.

Specific measures:

Table 5.4

Table 5.4 Specific measures for treatment of mouth problems


Treament options

Dry mouth

Review medication that might be causing dryness e.g. opioids, antidepressants

Hydrate as well as possible

Consider salivary stimulants (especially pre-meals) – iced water/sucking ice cubes, pineapple chunks, chewing gum, boiled sweets or mints

Consider saliva substitutes e.g. Glandosane® spray, Oralbalance® gel

Radiotherapy induced dryness – consider pilocarpine 5mg po tds (sweating is a common side effect), pilocarpine 4% eye drops in raspberry syrup or peppermint water 2–3 drops po tds (unlicensed) or bethanechol 10mg tds with meals

Mouth ulcers/sore patches

Topical analgesia e.g. Teejel®, Bonjela®

Adcortyl in Orabase® paste topically qds after eating and nocte (or orabase paste alone if no aphthous ulceration)

Hydrocortisone lozenges (Corlan®) 1 qds po to ulcerated area

Tetracycline mouthwash – for resistant ulcers—dissolve contents of a 250mg capsule in water and hold in the mouth for 2–3min. bd for 3d. Avoid swallowing. May stain teeth.

Chemotherapy induced ulcers – sucralfate suspension 10ml as mouthwash every 4h.

Mouth cancer pain

Try topical NSAIDs e.g. piroxicam melt 20mg od

Excessive salivation/drooling

Non-drug treatment – head positioning, suction

Amitriptyline 10–100mg po

Propantheline 15mg tds

β‎-blockers e.g. atenolol 50mg od

Atropine eye drops 2 drops to mouth qds (unlicensed)

Generally sore mouth

Avoid foods that trigger pain e.g. acidic foods

Consider systemic analgesic e.g. NSAID and/or opioids

Difflam® mouthwash 10ml qds (dilute in same amount of water before use if stings)

Soluble aspirin – rinse mouth and swallow – 300–600mg qds if no contraindications

Lidocaine spray, gel or cream – beware of pharyngeal anaesthesia and risk of aspiration

Betadine®, Oraldene® or chlorhexidine 0.2% (Corsodyl®) mouthwash – rinse with 10ml for 1min. bd

Oral infection


Coated tongue/mouth

Use a soft toothbrush/sponge to clean the tongue

¼ – ½ ascorbic acid 1g effervescent tablet/d. can help – place on tongue and allow to dissolve

Fresh pineapple contains enzymes that dissolve the protein coating – try sucking small pieces.


A distressing symptom. Treatment is often unsatisfactory.

  • General measures:

    Rebreathing with a paper bag; pharyngeal stimulation by drinking cold water or taking a teaspoonful of granulated sugar.

  • Peripheral hiccups:

    Caused by irritation of the phrenic nerve or diaphragm – try small, frequent meals; metoclopramide (10mg tds); antacids containing dimeticone (e.g. Gaviscon®, Asilone®); dexamethasone (4–12mg/d.); or, ranitidine (150mg bd).

  • Central hiccups:

    Due to medullary stimulation e.g. ↑ICP, uraemia – try chlorpromazine (25mg stat then 10–25mg tds/qds), dexamethasone (4–12mg/d.), nifedipine (5–10mg prn or tds) or baclofen (5mg bd/tds). Anticonvulsants e.g. gabapentin may also be effective.

Oral thrush (candidiasis):

Candida albicans is a virtually uniform commensal of the mouth and GI tract producing opportunistic infection.


Sore mouth ± loss of taste ± dysphagia. Examination reveals white plaques visible on buccal mucosa which can be wiped off (Figure 5.1) ± angular stomatitis.


  • Remove tongue deposits with a toothbrush by brushing 2x/d.

  • Treat infection with oral pastilles, suspensions or gels (e.g. nystatin suspension 100,000U/ml 2–5ml qds po, nystatin pastilles 1 qds, miconazole oral gel 25mg/ml qds or amphotericin lozenges 10mg qds – all after food and nocte for 1–2wk.).

  • If false teeth, advise to place imidazole gel on the teeth before insertion and sterilize by soaking for >12h. (usually overnight) with dilute hypochlorite solution (e.g. Milton®) to prevent re-infection.

  • Reserve systemic treatment for patients with recurrent, extensive, systemic or resistant infection e.g. oral fluconazole 50mg od for 1–2wk.—higher doses or prolonged therapy may be needed if immunosuppressed (seek specialist advice).

Herpes simplex (HSV) infection:

Transmitted by direct contact with lesions. After initial infection, HSV remains dormant in the nerve ganglia and recurrent eruptions can occur, precipitated by overexposure to sunlight, febrile illnesses, physical or emotional stress, or immunosuppression. The trigger stimulus is often unknown. Diagnosis is usually clinical but can be confirmed with a viral swab of the ulcer if necessary.


  • Lesions may appear anywhere but are most frequent around the mouth (Figure 5.2), conjunctiva, cornea, and genitalia. They can be very painful—in the mouth, pain may cause dysphagia and dehydration.

  • After a prodromal period (generally <6h.) of tingling, discomfort or itching, small tense vesicles appear on an erythematous base. Single clusters vary in size from 0.5–1.5cm, but groups may coalesce.

  • Vesicles persist for a few days, then dry, forming a thin yellowish crust. Healing occurs 8–12d. after onset.

  • Infection may be accompanied by systemic symptoms e.g. fever, malaise and tender lymph nodes.

  • Immunocompromized patients can develop generalized infection with oesophagitis, colitis, perianal ulcers, pneumonia ± neurological signs.

Figure 5.2 Herpes simplex infection of the lower lip

Figure 5.2
Herpes simplex infection of the lower lip


  • Severe infections:

    e.g. immunocompromised patients – admit for systemic treatment with aciclovir.

  • Eye involvement:

    Refer for urgent ophthalmology assessment. Treatment is with topical ± oral aciclovir.

  • Suppression of recurrent eruptions:

    Oral aciclovir (and similar drugs).

  • Cold sores:

    Topical aciclovir – if started early. Available OTC.

  • 2° infections

    : Topical or systemic antibiotics.

  • Pain:

    Strong analgesia. Consider opioids if very painful – may need to be given via syringe driver if unable to swallow.

  • Dehydration:

    Consider admitting for iv fluids until pain has settled.


Difficulty swallowing food or liquids. Can cause considerable distress to patients and their families.


Box 5.2


Treat the cause if possible.

Post-radiation oesophagitis:

  • Avoid smoking, alcohol and spicy food

  • Treat any Candida infection ( [link])

  • Try an alginate-containing antacid e.g. Gaviscon® or sucralfate suspension

  • Try soluble aspirin or soluble paracetamol for pain. If not sufficient, try a NSAID po, buccally or pr (e.g. Piroxicam Melt 20mg od, diclofenac 75mg pr). If pain is severe, consider opioids via syringe driver until pain has settled.

  • Oesophageal spasm – try nifedipine 10mg tds.

Dysphagia due to physical obstruction by tumour bulk:

Consider urgent referral back to oncology or surgery.

  • Stenting may help e.g. Celestin tube for oesophageal cancer.

  • Chemotherapy/radiotherapy may decrease tumour bulk and give temporary relief.

Dysphagia due to functional obstruction from neurological deficit:

  • Ask speech therapy to assess – Is there a risk of aspiration? Are there any specific techniques to aid safe swallowing?

  • If the patient is hungry and wishes to be fed, consider referral for a percutaneous endoscopic gastrostomy (PEG) – see below.

  • If the patient does not wish to have a PEG, ask whether s/he would like subcutaneous fluids and treat symptomatically with mouth care, anxiolytics, analgesia, and sedation as needed.


  • Feeding gastrostomies are sometimes used prior to aggressive treatment to improve functional status and the ability to tolerate treatment for malignancies of the head and neck or oesophagus.

  • Gastrostomies can be used to improve nutrition and quality of life e.g in patients with MND – especially if death is not imminent – but should only be inserted after careful multidisciplinary discussion involving the patient and their family.

  • Ethical dilemmas can arise towards the end of life when gastrostomy feeding may prolong an uncomfortable dying period. Reducing or stopping artificial feeding may then need to be discussed ( [link]).

  • There is no evidence that routine insertion of feeding tubes in the dying either extends life or improves symptoms, but it can be demanded by families.

Symptom control and clinical scenarios in palliative careFor patients with impaired lung function, PEG insertion carries high mortality. Radiographically inserted gastrostomy (RIG) is an alternative to PEG and avoids endoscopy or sedation.

Advice for patients: Looking after an oesophageal stent to prevent it blocking

  • Don’t rush eating.

  • Have soft food in small mouthfuls and chew it well.

  • Drink a little during and after meals – fizzy drinks are helpful.

  • Sit up straight when eating.

  • Do not tackle large lumps of food – cut them up small and chew well.

  • Spit out anything not chewed.

  • Mix food supplements such as Complan® very thoroughly – dry powder will block the stent.

  • If you feel the stent is blocked, stop eating, drink a little and walk around a bit.

  • If the blockage persists for more than 3 hours ring your GP or contact the hospital where you were treated.

  • Clean the stent after eating with a drink of soda water or lemonade or use this mixture: 4oz sugar, 2oz cream of tartar, 2oz sodium bicarbonate – use one teaspoon of the mixture in a half tumbler of water.

  • Keep teeth and dentures in good order so that chewing is effective.

Foods to avoid:

  • Green salads/raw vegetables

  • Fried egg white/hard-boiled egg

  • Fruit skins and pith of grapefruit and orange

  • Tough meat and gristle

  • Nuts and dried fruits

  • Fish with bones

  • White bread, crusty bread, and toast

  • Shredded Wheat and Puffed Wheat

  • Hard chips and crisps

Information and support for patients and families:

Oesophageal Patients’

Cancerbacup ☎ 0808 800 1234 

Nausea and vomiting

Nausea and vomiting are common symptoms which cause patients and their relatives deep distress. Of the two, nausea causes most misery.

General principles of management:

  • Assess

    – try to identify likely cause—Table 5.5

  • Review medication

    – Could medication be the cause? Which antiemetics have been used before and how effective were they?

  • Try non-drug measures

    (see below).

  • Choose an antiemetic

    – if cause can be identified, choose an antiemetic appropriate for the cause (Table 5.5). Use the antiemetic ladder (Figure 5.3). Administer antiemetics regularly rather than prn and choose an appropraite route of administration (see below).

  • Review frequently

    – Is the antiemetic effective? Has the underlying cause of the nausea/vomiting resolved? Avoid changing antiemetic before it has been given an adequate trial at maximum dose.

Table 5.5 Causes of vomiting and choice of antiemetic

Mechanism of vomiting


Drug/toxin induced or metabolic e.g. hypercalcaemia

Haloperidol (1.5–5mg nocte; particularly for opioid induced vomiting or renal failure). An antiemetic is usually necessary only for the first 4–5d. of opiate therapy

If nausea is persistent and due to opioids, consider changing opioid

Levomepromazine 6.25mg nocte


Granisetron 1mg stat then 1mg bd or ondansetron 8mg bd po or 16mg od pr – particularly for chemotherapy or radiotherapy induced vomiting

Haloperidol 1.5–5mg nocte – for radiotherapy induced vomiting

Dexamethasone 4–8mg daily po or s/cut – often given as part of a chemotherapy regime

Metoclopramide 20mg qds

intracranial pressure

Dexamethasone 4–16mg/d.

Cyclizine 50mg bd/tds (or 150mg/d. via syringe driver)

Anxiety, fear or pain

Benzodiazepines e.g. diazepam 2–10mg/d. or midazolam 2.5–5mg stat of 5–20mg subcutaneous infusion

Cyclizine 50mg bd/tds

Levomepromazine 6–25mg/d.


Cyclizine 50mg tds po/sc/im

Hyoscine po (300mcgm) or transdermally (1mg/72h.)

Prochlorperazine po (5mg qds) or buccal (3–6mg bd)

Gastric stasis *

Domperidone 10mg tds or metoclopramide 10mg tds (particularly if multifactorial with gastric stasis and a central component)

Gastric irritation

Stop the irritant if possible e.g. stop NSAIDs

Proton pump inhibitors e.g. lansoprazole 30mg od or omeprazole 20mg od


Misoprostol 200mcgm bd – if caused by NSAIDs



Intestinal obstruction


Cough induced


Unknown cause

Cyclizine 50mg tds or 150mg/d. via syringe driver

Levomepromazine 6–25mg/d.

Dexamethasone 4–8mg daily po/s/cut

Metoclopramide 10–20mg tds/qds po

* vomits of undigested food without nausea soon after eating

Symptom control and clinical scenarios in palliative careIf there is >1 cause of nausea/vomiting you may need >1 drug.

Route of administration:

  • For prophylaxis of nausea and vomiting—use po medication.

  • For established nausea or vomiting, consider a parenteral route e.g. syringe driver ( [link] and [link])—persistent nausea may ↓ gastric emptying and drug absorption. Once symptoms are controlled, consider reverting to a po route.

Common side effects of antiemetics:

  • Haloperidol and metoclopramide

    – restlessness and/or urge to move (akathisia) or parkinsonian effects (e.g. stiffness, tremor).

  • Cyclizine

    – anticholinergic effects e.g. dry mouth, blurred vision, urinary retention.

  • Levomepromazine

    – sedation at doses >6.25mg b.d.

  • Prokinetic drugs

    (e.g. metoclopramide, domperidone) – use with care if bowel obstruction is suspected – may ↑ gut colic/worsen vomiting.

  • Granisetron and ondansetron

    – associated with constipation.

Non-drug measures:

Don’t forget non-drug measures to ↓ nausea:

  • Avoidance of food smells and unpleasant odours

  • Relaxation/diversion/anxiety management

  • Acupressure/acupuncture

Symptom control and clinical scenarios in palliative careDrugs with antimuscarinic effects (e.g. cyclizine) antagonize prokinetic drugs (e.g. metoclopramide) – if possible, do not use concurrently.


Dyspepsia can be a source of marked morbidity and distress in terminally ill patients.


  • Gastro-oesophageal reflux disease (GORD) – 15–25%

  • Peptic ulcer (PU) – 15–25%

  • Stomach cancer – 2%

  • The remaining 60% are classified as non-ulcer dyspepsia (NUD, ‘functional’ dyspepsia)

  • Rare causes: oesophagitis from swallowed corrosives, oesophageal infection (especially in the immunocompromized)


  • Common symptoms include retrosternal or epigastric pain, fullness, bloating, wind, heartburn, nausea, and vomiting.

  • Examination is usually normal – there may be epigastric tenderness.

  • Check for clinical anaemia, hepatomegaly, and ascites.

Differential diagnosis:

Cardiac pain (difficult to distinguish), oesophageal spasm, gallstone pain, pancreatitis, bile reflux.


Lifestyle advice:

  • Give advice on healthy eating and smoking cessation.

  • Advise patients to avoid precipitating factors e.g. coffee, chocolate, fatty foods.

  • Raising the head of the bed and having a main meal well before going to bed may help some people.

Further measures:

  • Avoid or reduce the dose of drugs which cause dyspepsia e.g. potassium supplements, steroids, NSAIDs

  • Promote continuing use of antacids/alginates e.g Gaviscon® 10ml qds. Aluminium-containing antacids cause constipation; magnesium-containing antacids are laxative; dimeticone in asilone® is a defoamer, useful for gastric distension/hiccups.

  • Try a proton pump inhibitor e.g. lansoprazole 30mg od or omeprazole 20mg od. Treat for 1mo. then stop. If symptoms recur then retreat and after 1mo. reduce dose to a ‘maintenance dose’ for the long term i.e. lansoprazole 15mg od or omeprazole 10mg od.

  • Consider referral for paracentesis if tense ascites

  • Consider trying metoclopramide 10mg tds if signs of gastric stasis or distension exist.

  • Exclude or treat oesophageal candida –  [link]

Further information:

Southwest London and Surrey, West Sussex and Hampshire Cancer Networks

Watson and Lucas. Adult Palliative Care Guidelines. 2006.


Management of dyspepsia in adults in primary care (2004) 

GP Notes: Use of NSAIDs

  • All NSAIDs are associated with GI toxicity – risk is ↑ in the elderly. Risks are dose related and vary between drugs.

  • Use lower risk NSAIDs e.g. ibuprofen as first-line treatment.

  • Start at the lowest recommended dose.

  • For the elderly, those on steroids or those with past history of GI ulceration or indigestion, protect the stomach with misoprostol (200mcgms 2–4x/d. taken with the NSAID) or a proton pump inhibitor (PPI e.g. omeprazole 20mg od or lansoprazole 30mg od), or use a COX2 inhibitor (see below).

  • Don’t use more than one oral NSAID at a time.

  • Remember all NSAIDs are contraindicated in patients with active peptic ulceration. Non-selective NSAIDs are contraindicated in patients with a history of peptic ulceration.

Symptom control and clinical scenarios in palliative careCombination of a NSAID and low dose aspirin may ↑ risk of GI side effects: only use this combination if absolutely necessary and if the patient is monitored closely.

Symptom control and clinical scenarios in palliative careAvoid combination of anticoagulants with NSAIDs – NSAIDs enhance the anticoagulant effect of warfarin and risk of GI bleeding is greatly ↑.

COX2 inhibitors:

COX2 inhibitors:

  • Have NO effect on platelet aggregation.

  • Have no benefit over non-selective NSAIDs if used in patients on continuous low-dose aspirin, and

  • Combining a COX2 inhibitor with PPI/misoprostol does NOT give extra stomach protection.

Symptom control and clinical scenarios in palliative careDue to concerns about cardiovascular safety, only use COX2 inhibitors in preference to standard NSAIDs when specifically indicated (i.e. for patients at high risk of developing gastroduodenal ulcer, perforation, or bleeding) and after an assessment of cardiovascular risk. Switch patients receiving a COX2 inhibitor who have ischaemic heart disease or cerebrovascular disease to alternative treatment.

Gastrointestinal (GI) bleeding


Box 5.3. Bleeding due to cancer is usually due to a primary carcinoma of the stomach, oesophagus, or colon.

Risk factors:

NSAIDs, steroids, anticoagulation, excess alcohol consumption, liver disease.


Upper GI bleeding:

Typical presentation:

  • Haematemesis – vomiting of blood

  • Melaena – passage of black, offensive, tarry stool consisting of digested blood per rectum

Symptom control and clinical scenarios in palliative careIron tablets may cause black stools.

Lower GI bleeding:

Typical presentation:

  • Passage of fresh blood PR.

Symptom control and clinical scenarios in palliative careVery heavy upper GI bleeds can present with fresh red bleeding PR.

Other features that may be present:

  • Faintness or dizziness especially on standing

  • Patient feels cold or clammy

  • Collapse ± cardiac arrest


  • Pulse – tachycardia

  • BP – ↓ and/or postural drop

  • JVP – ↓

  • Vomitus


Severe, life-threatening bleed:

Make a decision whether the cause of the bleed is treatable or a terminal event. This is best done in advance but bleeding can’t always be predicted. Symptom control and clinical scenarios in palliative carePalliative treatment options include laser treatment and arterial embolization – both can be performed on frail patients.

  • Severe bleed – active treatment

    : Briefly assess the severity of the bleed from history and examination (or history alone if based on telephone information). If a significant bleed is suspected:

    • Call for emergency ambulance support

    • Lie the patient flat and lift legs higher than body (e.g. feet on pillow)

    • Insert a large-bore IV cannula – the opportunity may be lost by the time the ambulance crew arrive. If possible take a sample for FBC and X-match on insertion.

    • If available, give oxygen.

    • If available, start plasma expander/IV fluids.

    • Transfer as rapidly as possible to hospital.

  • Severe bleed – no active treatment:

    • Stay with the patient

    • Give sedative medication e.g. midazolam 10–40mg s/cut or slow IV or diazepam 10–20mg pr and diamorphine 5–10mg s/cut or IV if in pain

    • Support carers as major bleeds are extremely distressing.

Non-life threatening bleed:

Unless the patient is very frail, admit for further investigation. Occasionally small bleeds herald much larger ones.

If acute admission is not appropriate:

Reassure, monitor frequently. Follow up is directed at cause:

  • Check FBC and clotting screen – if on anticoagulants or there is a possible bleeding tendency. Consider addressing clotting problem and/or iron supplements or transfusion ( [link]).

  • Treat infection that might exacerbate a bleed.

  • Consider minimizing bleeding tendency with tranexamic acid 1g tds po – stop if no effect after 1wk. If effective, continue for 1wk. after bleeding has stopped. Continue 500mg tds long-term if bleeding recurs and responds to a further course of treatment. Weigh up benefits of stopping bleeding against ↑ risk of stroke or MI.

  • Etamsylate 500mg qds can be useful for capillary bleeding.

  • Upper GI bleeding – stop NSAIDs, start PPI e.g. omeprazole 20mg od or lansoprazole 30mg od ± consider referral for gastroscopy.

  • Lower GI bleeding – consider rectal steroids to ↓ inflammation or rectal tranexamic acid ± referral for colonoscopy. Oral sucralfate has been used for post-radiation proctitis (applied topically pr).

  • Referral for radiotherapy (if bleeding from tumour), chemotherapy, or palliative surgery (e.g. cautery) is an option in some cases.

GP Notes:

Symptom control and clinical scenarios in palliative careIn all patients likely to bleed, consider pre-warning carers and giving them a strategy. Risks of frightening a family with information about possible catastrophic haemoptysis need to be balanced against potential distress that could be caused by leaving a patient and family unprepared.


Constipation is the passage of hard stools less frequently than the patient’s own normal pattern. It is a very common symptom.


Box 5.4


Stool frequency varies considerably.

  • Establish symptoms and onset.

    What is normal for the patient? What does the patient mean by constipation? Is this symptom a recent change? When did s/he last have a bowel movement? Was the stool normal for him/her? Specifically ask about tenesmus, blood in stool, abdominal pain, and diarrhoea.

  • Check current medication:

    Does the patient use laxatives? If so, which ones and how often?

  • Background information:

    ask about diet

  • Examine the abdomen:

    for masses and hepatomegaly. Rectal examination is essential to exclude a low rectal or anal tumour obstructing the bowel and detect faecal impaction.

  • Consider checking U&E, Ca2+ and thyroid function tests

    : only check if you intend to treat if an abnormality is found.

Symptom control and clinical scenarios in palliative careConstipation can herald spinal cord compression ( [link]). If suspected, undertake a full neurological examination.

Occult presentations:

Common in the very elderly and frail. Include:

  • Confusion

  • Urinary retention

  • Abdominal pain

  • Overflow diarrhoea

  • Loss of appetite

  • Nausea and/or vomiting


  • Pre-empt constipation by putting everyone at risk (e.g. patients on opioids) on regular laxatives.

  • Treat reversible causes e.g. give analgesia if pain on defaecation, alter diet, ↑ fluid intake.

  • Treat with regular stool softener (e.g. lactulose) ± regular bowel stimulant (e.g. senna) or alternatively use a combination drug (e.g. co-danthrusate). Titrate dose against reponse. The aim of laxative therapy is to promote comfortable defaecation – not increase frequency.

  • If that is ineffective, consider adding rectal measures. Ask – Is the rectum full? Is the stool soft or hard?

    • Soft stools and lax rectum – try bisacodyl suppositories (Symptom control and clinical scenarios in palliative caremust come into direct contact with rectum).

    • Hard stools – try glycerol suppositories – insert into the faeces and allow to dissolve. Softener and rectal stimulant – acts in 1–6h.

  • If still not cleared, refer to the district nurse for lubricant ± high phosphate (stimulant) enema (usually act in ∼20min.).

  • Once cleared, leave on a regular aperient with instructions to ↑ aperients if constipation recurs.

Manual evacuation:

May occasionally be necessary. Liaise closely with nursing staff. Do not attempt without some form of sedation or analgesia. Consent is an important and necessary part of this procedure.

Table 5.6 Drugs commonly used to treat constipation (BNF 1.6)



Speed of action

Bulk forming

e.g. bran, ispaghula, sterculia

Methylcellulose is bulk forming and a softener

↑ faecal mass and stimulate peristalsis

Useful for patients with small, hard stools where dietary fibre can’t be ↑

Maintain fluid intake >1l/d. to avoid bowel obstruction

Full effect takes several days to develop


e.g. senna (7.5–30mg nocte), bisacodyl (5–10mg nocte)

Docusate acts as stimulant and softener

↑ intestinal motility

Often cause abdominal cramp

Avoid in intestinal obstruction

Senna – 8–12h.


  • tablets – 10–12h.

  • suppositories –20–60min.


e.g. docusate (up to 500mg/d. in divided doses)

Surfactant action draws water into the stool

1–2 days


e.g. lactulose, magnesium hydroxide (25–50ml prn), macrogols (Movicol® 1–3 sachets/d. in divided doses)

↑ water in the large bowel

Dehydrating so maintain fluid intake >1l/d.

May cause abdominal distention/cramps




e.g. co-danthramer (dantron + poloxamer ‘188’ , 1–2 capsules nocte); co-danthrusate (dantron + docusate, 1–3 capsules nocte)

Dantron is a stimulant laxative.

Use of dantron is limited to the very elderly and those with terminal illness as it is carcinogenic in rats

May colour urine red

Avoid if incontinence as is a skin irritant


Other GI problems


Free fluid in the peritoneal cavity.


abdominal distention. Examination reveals shifting dullness to percussion ± fluid thrill.


Box 5.5


Depending on clinical state consider referring for radio- or chemotherapy if appropriate or treat symptoms:

  • Give analgesia for discomfort.

  • Refer for paracentesis and/or peritoneo-venous shunt (if recurrent ascites) if the patient is well enough. Symptom control and clinical scenarios in palliative careShunts frequently block.

  • Try diuretics – furosemide 20–40mg od and/or spironolactone 100–600mg od. May take a week to produce maximal effect. More likely to be useful if the patient has liver metastases causing hepatic dysfunction. Symptom control and clinical scenarios in palliative careMonitor albumin level – if low, diuretics make ascites worse.

  • Dexamethasone 2–4mg/d. may help – discontinue if not effective.

  • Try support stockings and/or massage for leg oedema.

  • ‘Squashed stomach syndrome’ – try prokinetics e.g. domperidone or metoclopramide 10mg tds.

Symptom control and clinical scenarios in palliative careMost patients with malignancy-related ascites have poor prognosis – a principle of minimal disturbance should usually guide management.

Obstruction/subacute obstruction of the bowel:

Often of complex origin with functional and mechanical elements.


  • Vomiting – often faeculent with little preceding nausea

  • Constipation

  • Abdominal distention

  • Examination reveals an empty rectum

Treatment options:

Active treatment:

  • If surgery is an option, then refer for a surgical opinion

  • If the patient is otherwise well, consider referral to an oncologist – ovarian and colonic cancers often respond to chemotherapy.

Symptomatic treatment:

If active treatment is not an option:

  • Keep the patient hydrated stool soft.

  • Dexamethasone 4–8mg/d. is antiemetic and minimizes obstruction.

  • If colic is a problem, stop prokinetics (metoclopramide/domperidone) and start an antispasmodic (e.g. hyoscine 300mcgm tds po).

  • For pain, give an opioid—via syringe driver if risk of malabsorption.

  • Aim to abolish nausea and keep vomiting to a minimum (may be impossible to abolish vomiting) with cyclizine, haloperidol or levomepromazine. If vomiting can’t be controlled, consider referral for venting gastrostomy.

  • Consider referral to palliative care for antisecretory agents (e.g. octreotide). Symptom control and clinical scenarios in palliative careOctreotide dries up all GI secretions tending towards constipation.

Further information:

European Journal of Palliative Care

Campbell C Controlling malignant ascites (2001). 8(5): 187–91.

Palliative Medicine

Stephenson & Gilbert The development of clinical guidelines on paracentesis for ascites related to malignancy (2002). 16(3): 213–8.


Baines M ABC of palliative care: Nausea, vomiting and intestinal obstruction (1997). 315: 1148–50. 

Gut fistulae:

Connections from the gut to other organs – commonly skin, bladder, or vagina. Bowel fistulae are characterized by air passing through the fistula channel.


  • If well enough for surgery, refer to a surgeon.

  • If not fit for surgery consider referring to palliative care for octreotide.


Defined as passage of ≥3 loose stools/d. Clarify what the patient/carer means by diarrhoea. Less common than constipation but can be distressing for the patient and difficult for the carer – especially if incontinence results.


  • ↑ fluid intake – small amounts of clear fluids frequently.

  • Screen for infection (including pseudomembranous colitis if diarrhoea after a course of antibiotics) and treat if necessary.

  • Ensure no overflow diarrhoea 2° to constipation.

  • Ensure no excessive/erratic laxative use.

  • Ensure no other medication is causing diarrhoea.

  • Consider giving aspirin (300–600mg tds) – ↓ intestinal electrolyte and water secretion caused by prostaglandins. May particularly help with radiation-induced diarrhoea.

  • Consider ondansetron 4mg tds for radiotherapy-induced diarrhoea.

  • Consider giving pancreatic enzyme supplements e.g. creon® 25000 tds prior to meals if fat malabsorption (e.g. 2° to pancreatic carcinoma).

  • Otherwise treat symptomatically with codeine phosphate 30–60mg qds or loperamide 2mg tds/qds.

  • Refer to palliative care if unable to control symptoms.


Sensation in the rectum of incomplete emptying following defaecation – as if there is something left behind which cannot be passed. It is most common in association with irritable bowel syndrome, but can be caused by tumour.


  • Prevent and treat constipation ( [link])

  • Give analgesia

  • NSAID e.g. diclofenac 50mg tds

  • Opioids – variable effect

  • Neuropathic painkillers e.g. amitriptyline or anticonvulsants

  • Nifedipine 10–20mg bd, nitrates or baclofen may help due to their effect on muscle tone

  • Steroids may be helpful

Depending on clinical state and cause of tenesmus, consider referral for radiotherapy (if the cause is a tumour), lumbar sympathectomy (>80% success rate) or spinal infusion of local anaesthetic ± opioids.

GP Notes: Diagnosing cause of diarrhoea

  • Defaecation described as ‘diarrhoea’ happening only 2–3x/d. without warning suggests anal incontinence.

  • Profuse watery stools are characteristic of colonic diarrhoea.

  • Sudden onset of diarrhoea after a period of constipation raises suspicion of faecal impaction and ‘overflow’ diarrhoea.

  • Alternating diarrhoea and constipation suggests poorly regulated laxative therapy or impending bowel obstruction.

  • Pale, fatty, offensive stools (steatorrhoea) indicate malabsorption due to either pancreatic or ileal disease.

Further information:

Doyle et al.

Oxford Textbook of Palliative Medicine. (2005). OUP. ISBN: 0198566980.

Patients with ostomies

The first iatrogenic stoma was constructed in France in 1776 for an obstructing rectal cancer. Stomas (from the Greek meaning ‘mouth’ ) may be temporary (de-functioning) or permanent.

Common problems:

Psycho-social problems:

Self-help groups provide information and tips on lifestyle and stoma care; specialist stoma nurses can provide support and counselling.

Stoma retraction:

Can cause leakage and severe skin problems. Most common reason for re-operation. Refer for specialist advice.


Seen most frequently with loop colostomy. If persists and disrupts pouching, refer for consideration of revision.

Peristomal hernia:

Common complication. Symptomatic cases require referral for repair unless life expectancy is very limited.


Narrowing of the stoma may result in difficulty or pain passing stool and/or obstruction. If problematic, refer for revision.

Skin complications:

Skin irritation can be due to:

  • Leakage onto the skin

  • Allergic reactions to the adhesive material in a skin barrier

  • Fungal infection

  • Inadequate hygiene


Enteric-coated and modified release preparations are unsuitable for people with bowel stomas – particularly for patients with ileostomy.


  • Avoid foods that cause intestinal upset or diarrhoea.

  • In the case of descending/sigmoid colostomy, avoid foods that cause constipation. If constipated, ↑ fluid intake and/or dietary fibre.

  • Certain foods e.g. beans, cucumbers, and carbonated drinks can cause gas, as can certain habits such as talking or swallowing air while eating, using straws, mouth breathing, and chewing gum.

  • A daily portion of apple sauce, cranberry juice, yogurt, or buttermilk can help control odour. If odour is strong and persistent, consider use of charcoal filters.


Advise patients to avoid rough contact sports and heavy lifting as these might lead to herniation around the stoma. Patients with stomas may swim. Water will not enter a stoma due to peristalsis so stomas do not need to be covered when bathing.


Advise patients to pack sufficient supplies of their stoma products and carry supplies with them in case baggage is misplaced. Avoid storing supplies in a very hot environment as heat may damage pouches.

Symptom control and clinical scenarios in palliative careIn all cases liaise with a specialist stoma nurse if possible.

Table 5.7 The three main types of stoma





Depends on site:

  • transverse colostomy—soft stool

  • descending/sigmoid colostomy—formed stool

Soft/fluid stool

Urine – continent procedures using bowel to fashion a bladder which is then drained with a catheter through the stoma are becoming common

Reasons for using this type of stoma


Diverticular disease


Radiation enteritis

Bowel ischaemia

Hirschprung’s disease

Congenital abnormalities


Crohn’s disease

Faecal incontinence

Ulcerative colitis

Crohn’s disease

Familial polyposis coli


Radiation enteritis


Bowel ischaemia



Urinary incontinence


Spinal column disorders

GP Notes: Prevention of skin complications

  • Advise patients to clean, rinse, and pat the skin dry between pouch changes.

  • Advise patients to avoid using an oily soap, which can leave a film that interferes with proper adhesion of the skin barrier.

  • Ensure the pouch system fits.

  • Treat any infection with oral antibiotics and/or oral/topical antifungals.

  • Apply skin barrier cream.

  • If the skin is uneven (e.g. due to scarring), fill irregularities with stoma paste to give a better fit.

  • Consider the use of convex discs or stoma belts (refer to specialist stoma nurse for advice).

Advice for patients: Information and support for patients and carers

British Colostomy Association ☎ 0800 328 4257 

Incontinence of urine

Urinary incontinence in advanced illness can be a cause of great embarrassment to patients and carers and also cause an increased sense of isolation. Active management of the symptom can bring great comfort to the patient and their family.



A good history is essential to establish the likely cause and so direct management decisions appropriately.

  • Frequency of complaint

  • Degree of incapacity

  • Whether occurs with standing/coughing/sneezing

  • Urgency/dysuria/frequency of micturition

  • Volume passed

  • Past obstetric and medical history

  • Medication

  • Mobility

  • Accessibility of toilets


  • Abdominal including rectal examination

    – enlarged bladder, masses, loaded colon, faecal impaction, anal tone.

  • Pelvic

    – prolapse, atrophy, neurological deficit, retention of urine, and pelvic masses.


Intake/output diary – evaluates problem and benchmark for progress (record drinks and passage of urine); Urine – glucose, RBCs, MC&S; consider U&E/fasting blood glucose if renal impairment or DM is suspected.

Symptom control and clinical scenarios in palliative carePatients may have a mixed pattern of incontinence.

Drugs that exacerbate/cause incontinence:

Diuretics, antihistamines, anxiolytics, α‎-blockers, sedatives and hypnotics, anticholinergic drugs, tricyclic antidepressants.

General measures:

  • Manipulate fluid intake – amount, type (avoid tea, coffee, alcohol), timing of fluids at night.

  • Alter medication e.g. timing of diuretics.

  • Treat UTI and chronic respiratory conditions.

  • Avoid constipation.

  • Consider HRT (topical or systemic) for oestrogen deficiency.

Functional incontinence:

No urological problem. Caused by other factors e.g. inaccessible toilets/immobility, behavioural problems, cognitive deficit. Treat the cause.

Total urethral incontinence:

  • Symptoms:

    Uncontrollable loss of urine.

  • Causes:

    Incompetence of the urethral sphincter (e.g. due to tumour invasion or surgical intervention) or central loss of sphincter control (e.g. due to confusion or dementia).

  • Treatment:

    Incontinence aids e.g. pads or catheters. If the cause is central loss of sphincter control, regular toileting may be effective.

GP Notes: Aids and appliances for incontinence


Many different types. DNs or continence advisors are best aware of those available via the NHS locally. They are not prescribable on FP10 and supplied by local NHS Trusts on a ‘daily allowance’ basis. This situation varies across the country.

Bed covers:

Absorb 1–4l of urine. Good laundry facilities are needed. If left wet, can cause skin breakdown. Available via NHS Trusts.

External catheters or sheaths/conveens:

Can be prescribed on NHS prescription. Approved appliances are listed in part IXB of the UK Drug Tariff. Used for men who have intractable incontinence and who are highly physically dependent, do not have urine retention and do not require an internal catheter. Assessment and fitting by a DN or continence adviser is essential. Used in association with a drainage bag. Types:

  • Self-adhesive e.g. Bard (Integrity) or attached with adhesive strips e.g. NorthWest Medical (Uridrop and Uristrip). Adhesive sheaths can last several days but daily changing is recommended.

  • Non-adhesive e.g. Manfred Sauer (Comfort sheath). Replace non-adhesive sheaths 2–3x/d.. Some are reusable e.g. Bard (Urosheath).


Include ↑ susceptibility to UTI, sores on penis and skin irritation due to the adhesive.

Indwelling catheters:


Intermittent self-catheterization:

The patient inserts a catheter into his/her bladder 4–5x/d. to drain urine. ↓ problems of infection and blockage. Useful for neurological bladder dysfunction. Types:

  • Reusable silver or stainless steel

    e.g. Malvern (Biscath®)

  • Reusable PVC

    e.g. Bard (Reliacath®), Rüsch (Riplex®) – can be washed and reused for 1wk. Usually supply 5/mo.

  • Single use

    e.g. Astra Tech (Lofric®) – need 125–150/mo. Expensive. Only use on consultant advice.

Collecting bags:

Can be prescribed on NHS prescription. Approved appliances are listed in part IXB of the UK Drug Tariff.

  • Leg bags:

    Drainable bags last 5–7d.. Usually 500/750mls e.g. Bard (Uriplan®). Larger capacity bags are too heavy for mobile patients. A variety of attachment systems are available on prescription. Long tubes are needed to wear a bag on the calf.

  • Night drainage bags:

    Connect to night bag attachment of day bags. Single use, non-draining bags are recommended e.g. Coloplast (Simpla S2®), Bard (Uriplan®). Bag hangers are not available on FP10.



Further information:


Electronic drug tariff 

Association for Continence Advice.

Advice for health care professionals 

Neurological incontinence:

Bladder function is a reflex action we learn to override as children.

  • If a lesion is above T6 level, automatic emptying will occur when the bladder is full – though there is no control.

  • If the lesion is below this level (e.g. damage to sacral plexus or lower spinal cord/cauda equine compression) there is no emptying reflex.

Usually, catheterization is needed – though, depending on the level of the lesion and manual dexterity of the patient, intermittent self-catheterization might be an option. Anticholinergics can help.

Stress incontinence:

  • Symptoms:

    Small losses of urine without warning throughout the day related to coughing/exercise.

  • Causes:

    Prostatectomy; childbirth; ageing.

  • Treatment:

    Pelvic floor exercises help 60% (taught by physiotherapists/continence advisors; leaflets available). Mechanical devices (e.g. Conveen continence guard®) help 75%. Ring pessaries are helpful for associated prolapse but do not usually control incontinence.

Urge incontinence:

Detrusor instability or hyperreflexia cause the bladder to contract unintentionally.

  • Symptoms:

    Frequency, overwhelming desire to void (often precipitated by stressful event), large loss, nocturia.

  • Causes:

    Idiopathic, neurological problems (e.g. stroke, MS), local irritation (bladder stones, infection), obstruction (benign prostatic hypertrophy), surgery (transurethral resection of the prostate).

  • Treatment:

    Try bladder training programmes – resist the urge to pass urine for increasing periods. Start with an achievable interval based on diary evidence and ↑ slowly. Drugs are helpful e.g. oxybutynin, amitriptyline (nocturnal symptoms). Spontaneously remits/relapses so reassess every 3–4mo.


  • Symptoms:

    Constant dribbling loss day and night.

  • Causes:

    Benign prostatic hypertrophy, prostate cancer, urethral stricture, faecal impaction, neurological (lower motor neurone lesions), side effect of medication.

  • Treatment:

    Aimed at relieving the obstruction – treatment of constipation, catheterization, surgery.

Urinary fistula:

Communication between bladder and the outside – normally through vagina. Results in constant dribbling loss day and night.

  • Causes:

    Congenital, malignancy, complication of surgery.

  • Treatment:

    Consider referral to gynaecology/urology depending on the clinical state of the patient. Protection of the skin is paramount, using barrier creams or sprays.

Advice for patients: Information and support

Bladder and Bowel Foundation ☎ 0845 345 0165 

Spinal Injuries Association ☎ 0845 678 6633 

GP Notes: Indwelling catheters

Can be prescribed on NHS prescription. Approved appliances are listed in part IXA of the UK Drug Tariff. Only use catheters in patients with urinary retention, incontinence, or problems getting to the toilet (e.g. bed bound).


Only long-term Foley catheters are suitable for use in primary care. They last 3–12wk. (usually change every 6wk.).

  • Hydrogel coated: e.g. Bard (Biocath®)

  • Silicone elastomer: Coated latex e.g. Bard, Rüsch (Sympacath®)

  • All silicone: e.g. Coloplast, Medasil, Rüsch (Brilliant Aquaflate®)

Catheter size:

Unless specified a 12 or 14Ch catheter is supplied. Use smallest diameter of catheter that drains urine effectively. Catheters >16Ch are more likely to cause bypassing of urine around the catheter and urethral strictures but may be needed if there is a lot of bladder debris or clot retention.

Catheter length:

Men require longer catheters than women. Specify ‘male’ or ‘female’ on the prescription.

Catheter balloon:

10ml balloons are supplied unless specified otherwise. Pre-filled catheters contain sterile water which inflates the retaining balloon with water. They are more expensive but quicker to insert and there are no costs for syringes or sterile water.


Usually attached to a leg bag though catheter valves are also available allowing the patient to use his/her bladder as a urine reservoir. The valve must be released every 3– drain out the urine.

Table 5.8 Common catheter problems


Check if constipated or catheter blocked. Try smaller gauge catheter. Use skin barrier creams to prevent skin problems.


90% develop bacteriuria <4 wk. after insertion. Always confirm suspected UTI with MSU – only treat if symptomatic or Proteus species grown. May prove difficult to eliminate.


Deposition from the urine onto the catheter. May cause catheter blockage or pain on changing catheter. Check urine pH regularly in patients with problems. Citric acid patency solutions may help if pH >7.4. Alternatively try a daily dose of vitamin C.


Due to presence of a catheter in the urethra. Exacerbated by encrustation and infection. Remove secretions/crusting with soap and water. If inflammation continues, try a different catheter type.


Flush the catheter with normal saline or 0.02% chlorhexidine. If unsuccessful, change catheter. Alter the interval of routine changes if regular blockage towards the end of catheter-life.

Bladder spasm

Irritation of the trigone of the bladder. Remove some water from the balloon (though catheter may fall out). Antispasmodics (e.g. oxybutynin) may help. Consider referral for suprapubic catheter.

Unable to insert catheter, deflate balloon to remove catheter, or false passage formation – Refer to urology


Haematuria ranges from microscopic haematuria discovered incidentally on urinalysis, to frank haematuria with the passage of clots ± clot retention. The amount of bleeding does not always correlate with severity of cause.

Symptom control and clinical scenarios in palliative careUrine discolouration, which can be confused with haematuria, can result from:

  • Beetroot ingestion

  • Porphyria and

  • Certain drugs (e.g. rifampicin, co-danthramer)


Box 5.6


Urine infection is uncomfortable and not usually a terminal event. Always investigate urine with M, C&S to exclude urine infection, unless the patient is very close to death.

Appropriateness of other investigations depends on the clinical state of the patient. Don’t investigate if you don’t intend to treat.

Other possible investigations include:

  • Renal/bladder USS

  • Intravenous urography – to look for obstructive lesions and stones

  • Referral for cystoscopy


  • ↑ fluid intake to promote good urine output (helps avoid clot retention and clear UTI).

  • Treat reversible causes e.g. UTI, bleeding tendency.

  • Stop drugs which might be causing/exacerbating bleeding.

  • If anaemic, consider iron supplements or transfusion.

  • Etamsylate 500mg qds may help by ↓ capillary bleeding in the bladder.

  • Consider referral for palliative radiotherapy.

  • Bleeding from the prostate may respond to finasteride 5mg od.

  • If severe bleeding, which is not a terminal event, consider admission for iliac artery embolization.

 Use of tranexamic acid is controversial – it may cause formation of hard clots which then need to be irrigated cystoscopically.

Clot retention:

Needs specialist management – admit. Specialist care involves evacuation of bladder clots. A non-distended bladder bleeds far less than a distended bladder.

Sexual health in advanced disease

Discussion of sexual issues is important but patients often find it difficult to ask for help as they are embarrassed and assume nothing can be done. Healthcare professionals also find it a difficult area to talk about both due to their own inhibitions and because they don’t think they have the knowledge to deal with problems.


  • Individuals with advanced cancer often remain sexually active.

  • Problems that arise may be physical, psychological or due to relationship changes and there are frequently several factors involved.

  • Many sexual problems are solvable.

Symptom control and clinical scenarios in palliative carePatients or partners of patients with cancer may fear that cancer can be transmitted through sex.

General issues:

Lack of libido in both sexes can be caused by:

  • Change in body image e.g. surgery, disfigurement, presence of stoma

  • Depression

  • Relationship problems

  • Hormone deficiency – male and female

  • Drug-related side-effects

  • Physical problems such as breathlessness, weakness, and pain


  • Explore sexual issues with open questions e.g. Has your disease affected the way you view yourself? Has it affected your relationships? Allow the patient to guide the consultation into more specific areas.

  • Address specific symptoms e.g. breathlessness.

  • Loss of libido postmenopause responds to administration of androgens e.g. testosterone implants in combination with HRT until libido is re-established. If the patient has a gynaecological or breast cancer, do not prescribe hormones without seeking specialist advice.

  • Consider referral to specialist counsellor for further support.


Common symptom in women. May be caused by

  • Fear of pain on intercourse

    e.g. due to pelvic surgery. Can cause tensing of the vaginal muscles (vaginismus) and pain on intercourse. Reassure. If not improving refer for specialist counselling.

  • Vaginal dryness

    – most commonly due to lack of oestrogen or fear. May also be due to radiotherapy. Advise vaginal lubricants. Consider a trial of topical oestrogen (e.g. estradiol tablet 25mcgm nocte for 2wk. then twice weekly for 3mo.) or HRT.

  • Vaginal soreness

    – check for infection, Thrush is the commonest cause. Treat with topical imidazole pessaries e.g. clotrimazole 500mg nocte × 1 ± cream or fluconazole 150mg × 1. If no response, send swabs for M, C&S. Topical lidocaine gel can be helpful if no cause is found.

  • Vaginal stenosis

    e.g. following surgery or radiotherapy. Refer for expert advice. Treatment is with vaginal dilators ± surgery.

  • Chronic pelvic pain

    – may be caused by underlying disease or as a result of treatment of the underlying disease (e.g. surgery or radiotherapy). If cause is untreatable, limiting penetration may help.

Advice for patients: Patient experience

‘When my partner developed bowel cancer every health care professional chose to assume that we were no longer sexually intimate. Not one professional raised the matter with us and we were left on our own to struggle through the guilts and practicalities of maintaining this very important aspect of our lives just when we needed to affirm each other most.’

Further information:

Tomlinson J

ABC of Sexual Health (1999). BMJ Publishing. ISBN: 0727917595.

Nursing Times

Law C Sexual health and the respiratory patient (2001). 97: NT Plus XI–XII.


Penson et al. Sexuality and cancer: conversation comfort zone (2000). 5: 336–44.

Erectile dysfunction (impotence):

Persistent inability to obtain or maintain sufficient rigidity of the penis to allow satisfactory sexual performance.

  • Drug causes (Table 5.9,  [link]).

  • Disease/treatment effects – spinal cord compression, pelvic malignancy, pelvic surgery/radiotherapy, orchidectomy, brain neoplasm.

  • Concurrent disease – DM, peripheral vascular disease, age-related.

  • Psychological – fear of failure to acquire or maintain an erection or fear of experiencing or causing pain.

Table 5.9 Drugs associated with sexual dysfunction

Endocrine drugs:

  • Antiandrogens e.g. cyproterone acetate

  • Anti-oestrogens e.g. tamoxifen (↓ libido in women)

  • Gonadorelin analogues e.g. goserelin implants


  • Thiazide diuretics e.g. bendroflumethiazide

  • β‎-blockers e.g. atenolol

Psychotropic drugs:

  • Antidepressants e.g. SSRIs

  • Phenothiazines e.g. levomepromazine

  • Butyrophenones e.g. haloperidol

  • Anxiolytics/hypnotics e.g. diazepam


  • Alcohol

  • Recreational drugs

  • Digoxin

  • Spironolactone

  • Ranitidine

  • Metoclopramide

  • Carbamazepine


Figure 5.4

Figure 5.4 Algorithm for the management of erectile dysfunction

Figure 5.4
Algorithm for the management of erectile dysfunction

Reproduced in modified form with permission from British Heart Foundation fact file: Drugs for erectile dysfunction (6/2005) available from 

  • Review medication – stop or change any drugs that might be causing the problem.

  • Phosphodiesterase type 5 inhibitors (PDE5s) are the mainstays of treatment – titrate dose to effect (most diabetics need the maximum dose); warn the patient he may need around 8 attempts before a satisfactory erection occurs; side effects include headache, flushing and acid reflux.

  • Review progress – adjust dosage and/or consider other treatment options – intraurethral/intracavernosal alprostadil or vacuum devices may rarely be appropriate for selected patients – refer to urology.

Table 5.10 PDE5 inhibitors and action times


Onset of action in min. (Peak action)

Duration of action (h.)



20–30 (60)




60–120 (120)




20–30 (60)



Symptom control and clinical scenarios in palliative carePDE5 inhibitors are contraindicated for patients taking nicorandil or nitrates, or immediately after MI or stroke.

Reproduced with permission from British Heart Foundation factfile: Drugs for erectile dysfunction (6/2005) available from 

GP Notes:

Symptom control and clinical scenarios in palliative careNHS prescriptions for impotence are available only for men:

  • Treated for prostate cancer; with kidney failure, spinal cord injury, DM, MS, spina bifida, Parkinson’s disease, polio, severe pelvic injury or who have had radical pelvic surgery or a prostatectomy.

  • Already receiving drug treatment for impotence on 14.9.98

  • Through specialist services for men suffering severe distress due to impotence.

Endorse FP10/GP10 with SLS.

Stridor and cough


Coarse wheezing sound that results from the obstruction of a major airway e.g. larynx.


  • Corticosteroids (e.g. dexamethasone 16mg/d.) can give relief.

  • Consider referral for radiotherapy or endoscopic insertion of a stent if appropriate.

If a terminal event:

Sedate with high doses of midazolam (10–40mg s/cut or slow IV, repeated prn).


Troublesome symptom. Prolonged bouts of coughing are exhausting and frightening – especially if associated with breathlessness and/or haemoptysis.

Reversible causes:

Box 5.7


General measures:

  • Exclude any treatable cause for cough (e.g. ACE inhibitors).

  • Advise upright body position.

  • Steam inhalations, inhalations with menthol or tinct. Benz. Co (Friars balsam) or nebulized saline can help.

  • Refer for chest physiotherapy, relaxation and breathing control exercises if tolerated.

  • Simple linctus 5–10ml prn can be helpful for dry cough. If not, consider low dose opioid e.g. pholcodine 10mls tds, codeine linctus 30mg qds, Oramorph® 2.5–5mg every 4h. or diamorphine 5–10mg/24h. via syringe driver. If already on opioids ↑ dose by 25%. Titrate dose until symptoms are controlled or side effects.

  • Diazepam 2–10mg tds can both relieve anxiety and act as a central cough depressant.

Specific measures:

  • Chest infection

    – treat with nebulized saline to make secretions less viscous ± antibiotics (if not considered a terminal event).

  • Tumour

    – consider referral for radiotherapy.

  • Post-nasal drip

    steam inhalations, steroid nasal spray or drops ± antibiotics.

  • Laryngeal irritation

    – try inhaled steroids e.g. beclometasone 100mcgm/actuation 2 puffs bd

  • Bronchospasm

    – try bronchodilators ± inhaled or oral steroids Symptom control and clinical scenarios in palliative caresalbutamol may help cough even in the absence of wheeze.

  • Gastric reflux

    – try antacids containing dimeticone (Gaviscon®, Asilone®)

  • Lung cancer

    – try inhaled sodium cromoglycate 10mg qds; local anaesthesia using nebulized bupivacaine or lidocaine can be helpful – refer for specialist advice (avoid eating/drinking for 1h. afterwards to avoid aspiration). Palliative radiotherapy or chemotherapy can also relieve cough in patients with lung cancer – refer.

  • Excess secretions – try hyoscine 400–600mcgm 4–8-hourly (or 0.6–2.4mg/24h. via syringe driver) and/or ipratropium inhalers/nebulized ipratropium.

Further information:

Doyle et al.

Oxford Textbook of Palliative Medicine (2005). OUP ISBN: 0198566980.


Expectoration of blood or blood-stained sputum.


Box 5.8. Bleeding due to cancer is most commonly from a primary carcinoma of the bronchus and a massive haemoptysis is usually from a squamous cell lung tumour lying centrally or causing cavitation.


  • Small episodes of haemoptysis occasionally herald a catastrophic bleed.

  • Malaena rarely occurs in association with haemoptysis if enough blood is swallowed.

  • Massive haemoptysis is rare but exceedingly distressing if it occurs.

  • The patient is more likely to die from suffocation secondary to the bleed than from the bleed itself.


Severe, life-threatening bleed:

Make a decision whether the cause of the bleed is treatable or a terminal event. This is best done in advance but bleeding cannot always be predicted.

  • Severe bleed – active treatment

    : Briefly assess the severity of the bleed from history and examination. If a significant bleed is suspected:

    • Call for emergency ambulance support.

    • Protect the airway

    • Lie the patient flat and lift their legs higher than body (e.g. feet on pillow). Alternatively, if the side of the bleed is known, lie the patient on that side to protect the healthy lung.

    • Insert a large bore IV cannula – the opportunity may be lost by the time the ambulance crew arrive. If possible, take a sample for FBC and X-match on insertion.

    • If available, give oxygen.

    • If available, start plasma expander/IV fluids.

    • Transfer as rapidly as possible to hospital.

  • Severe bleed – no active treatment:

    • Stay with the patient.

    • Give sedative medication e.g. midazolam 20–40mg s/cut or slow IV or diazepam 10–20mg pr, and diamorphine 5–10mg s/cut or IV if in pain.

    • Support carers as major bleeds are extremely distressing.

Non-life threatening bleed:

Reassure; monitor frequently.

Follow up treatment:

Follow up is directed at cause if appropriate:

  • Check FBC and clotting screen – if frequent bleeds or large bleed, on anticoagulants or possible bleeding tendency. Consider addressing the clotting problem and/or iron supplements or transfusion ( [link]).

  • Treat infection that might exacerbate a bleed.

  • Consider minimizing bleeding tendency with tranexamic acid 1g tds po – stop if no effect after 1wk. If effective, continue for 1wk. after bleeding has stopped. Continue 500mg tds long-term if bleeding recurs and responds to a further course of treatment. Weigh up benefits of stopping bleeding against ↑ risk of stroke or MI.

  • Radiotherapy – consider referral if haemoptysis but not if multiple lung metastases.

  • Referral for chemotherapy or palliative surgery e.g. cautery – options in some cases.

GP Notes:

Symptom control and clinical scenarios in palliative careIn all patients likely to bleed, consider pre-warning carers and giving them a strategy. Risks of frightening a family with information about possible catastrophic haemoptysis need to be balanced against potential distress that could be caused by leaving a patient and family unprepared – but, can anybody ever be prepared for catastrophic haemoptysis?


‘Breathing is the greatest pleasure in life’

Giovanni Papini (1881–1956)

Breathlessness affects 70% of terminally ill patients. It is usually multifactorial. Breathlessness always has a psychological element – being short of breath is frightening.


Figure 5.5

Symptom control and clinical scenarios in palliative careIf patient has a tracheostomy make sure the tracheostomy tube is not blocked by secretions.

General management:

Non-drug measures:

  • General reassurance.

  • Explanation of reasons for breathlessness and adaptations to lifestyle that might help.

  • Proper positioning – improved by sitting upright and straight.

  • Try a stream of air over the face – e.g. fan, open window.

  • Breathing exercises can help – refer to physiotherapy. Exercises include diaphragmatic breathing and control of breathing rate; relaxation training/distraction training.

Drug treatment:

  • Tenaceous secretions – try nebulized saline.

  • Oral or subcutaneous opioids ↓ subjective sensation of breathlessness – start with 2.5mg Oramorph® 4 hrly and titrate upwards.

  • Try benzodiazepines – 2–5mg diazepam od/bd for background control and lorazepam 1–2mg sublingually prn in between.

  • Oxygen has a variable effect and is worth a try.

Specific measures:

  • Airway compression, bronchoconstriction or lymphangitis

    – consider referral for anticancer treatment. Otherwise try steroids (dexamethasone 4–8mg/d.).

  • Intrinsic or extrinsic compression

    – consider referral for radiotherapy, laser therapy or stenting.

  • Pleural effusion

    – consider referral for drainage ± pleuradesis.

  • Pericardial effusion

    – consider referral for aspiration in a cardiac unit.

  • Infection

    – antibiotics ± physiotherapy – have a low threshold so treat with a broad-spectrum antibiotic if appropriate.

  • Pneumothorax on CXR

    – consider referral for chest drain.

  • Ascites

    – consider referral for paracentesis if causing breathlessness.

  • Suspected pulmonary emboli

    – consider anticoagulation ( [link]).

  • Wheeze

    – try inhaled bronchodilators e.g. salbutamol inhaler.

  • Excessive upper airway secretions

    – try hyoscine 0.4–2.4mg/24h. or glycopyrronium 200–600mcgm/24h. (consult local palliative care team).

  • Musculoskeletal pain

    – can cause hypoventilation – treat with analgesia.

  • Anaemia (Hb <9g/l)

    – consider referral for transfusion ( [link]).

  • Thick secretions

    – consider referral for chest physiotherapy.

  • Vocal cord palsy

    – consider referral to ENT for teflon injection.

Superior vena cava obstruction:


Pulmonary embolus:


Breathlessness in motor neurone disease:


Further information:

Doyle et al.

Oxford Textbook of Palliative Medicine (2005) OUP. ISBN: 0198566980.


Presence of ↑ corrected level of serum calcium (>2.6mmol/l).



  • Malignancy – 10% tumours:

    • Myeloma (>30%)

    • Breast cancer (40%)

    • Other tumours that metastasize to bone – lung, kidney, thyroid, prostate, ovary, colon

    • Squamous cell tumours

  • Primary hyperparathyroidism

  • Chronic renal failure


  • Familial benign hypercalcaemia

  • Sarcoidosis

  • Thyrotoxicosis

  • Milk alkali syndrome

  • Vitamin D treatment


May be an incidental finding. Symptoms are non-specific ‘bones, stones, groans and abdominal moans’

  • Tiredness, weakness, and lethargy

  • Mild aches and pains

  • Thirst, polydipsia, and polyuria

  • ↓ appetite, nausea and vomiting

  • Abdominal pain

  • Constipation

  • Depression and/or confusion

  • Stone formation or corneal calcification

Symptom control and clinical scenarios in palliative careAlways suspect hypercalcaemia if someone is more ill than expected and there is no obvious reason. Untreated hypercalcaemia can be fatal.


Depending on the general state of the patient, make a decision whether to treat the hypercalcaemia or not.

If a decision is made not to treat:

provide symptom control and don’t check the serum calcium again.

Active treatment:

depends on level of symptoms and Ca2+:

  • Asymptomatic patient with corrected calcium <3mmol/l:


  • Symptomatic and/or corrected calcium >3mmol/l:

    • Arrange treatment with IV fluids and bisphosphonates via oncologist/palliative care team immediately.

    • Check serum calcium 7–10d. post-treatment. 20% of patients do not respond and there is no benefit retreating them.

    • Effect of bisphosphonate lasts 20–30d.. Consider maintenance with oral bisphosphonates started 1wk. after the initial IV treatment or regular IV bisphosphonate. Many initially responsive to bisphosphonates become unresponsive with time.

GP Notes: Checking Ca2+

Check calcium level on an uncuffed sample to avoid falsely high readings.

Correct for serum albumin – for every mmol/l less than 40, a correction of 0.02mmol/l should be added to the serum calcium concentration measured. For example:

Ca2+2.40Corrected Ca2+=(40-24)×0.02+2.4Albumin24=0.32+2.4=2.72

Diabetes in palliative care

Fine control of blood glucose levels is no longer appropriate in the last weeks of illness – it may not be possible and is a distracting burden for the patient and family. Treatment goal is to keep the patient asymptomatic from their DM (avoiding symptomatic hyperglycaemia and hypoglycaemia) and to ↓ the burden of care (e.g. stop inappropriate glucose monitoring).

Causes of hyperglycaemia in palliative care:

  • Pre-existing DM – treatment needs may change e.g. if started on high-calorie feeds or corticosteroids, or if the patient develops infection.

  • Corticosteroid-induced DM – dose-related effect. Ask patients on long-term steroids to check their urine for glucose weekly.

  • Insulin deficiency due to pancreatic cancer.

Unpleasant symptoms caused by hyperglycaemia:

  • Persisting or frequent infection

  • Thirst

  • Polyuria

  • Nausea and vomiting

  • Blurred vision and/or neurological symptoms

  • Confusion

  • Ketoacidosis/coma

Causes of hypoglycaemia in palliative care:

  • ↓ appetite and/or cachexia.

  • Nausea or vomiting – due to cancer or treatment (e.g. chemotherapy).

  • Liver replacement by tumour – results in low glycogen stores and limited gluconeogenesis.

  • Excess hypoglycaemic agents – treatment needs for DM change e.g. if a patient loses a lot of weight, s/he may need less oral hypoglycaemic agent or insulin to control blood sugars.

  • Insulin-secreting tumours—rare.


  • Diet-controlled type 2 DM

    – none. Only monitor if symptomatic.

  • Oral hypoglycaemic-controlled type 2 DM

    – Use short-acting hypoglycaemic agents e.g. gliclazide. ↓ drug dose aiming to stop drugs. Stop drugs if unable to eat or drink. Check BM 1–2x/wk. routinely and if any symptoms of hypo- or hyperglycaemia.

  • Insulin-controlled type 2 DM

    – ↓ dose of insulin, aiming to stop insulin if possible. Check BM daily. If BM >20mmol/l or symptomatic, restart insulin in as simple a regime as possible (see type 1 DM). If symptoms then improve and there are no BMs <4mmol/l after 2d. of monitoring, stop monitoring unless symptomatic hypo- or hyperglycaemia. Stop insulin if unable to eat or drink.

  • Insulin dependent type 1 DM

    – continue as simple an insulin regime as possible (e.g. human monotard od, insulin glargine od or human isophane insulin ⅔ daily dose man and ⅓ nocte), checking BM prior to giving insulin. Aim to keep blood sugar at 10–15mmol/l. The priority is to prevent hypoglycaemia. Continue insulin even if not eating.

Initiating treatment in new diagnosis of hyperglycaemia:

Blood glucose ↑ but asymptomatic:

  • Give dietary advice tailored to individual circumstances.

  • Consider infection as a cause. Treat any infection found.

  • If on corticosteroids, consider reducing dose or stopping.

Blood glucose ↑ and symptomatic:

Check urine for ketones. If ketones present or blood glucose >27mmol/L, consider admission or same day referral for specialist advice on treatment, depending on the clinical state of the patient.

If no ketones and BM <27:

  • Give dietary advice tailored to circumstances.

  • Exclude infection as a cause. Treat any infection found.

  • If on corticosteroids, consider reducing dose or stopping.

  • If BM is still high and patient is symptomatic, start an oral hypoglycaemic agent e.g. gliclazide 80mg od.

  • Thin, cachectic patients are less likely to respond to oral hypoglycaemic drugs. If not responding, consider switching to insulin early – take specialist advice.

GP Notes: Converting insulin

If converting from a mixed insulin regime (e.g. isophane insulin + human soluble insulin) to single daily human monotard:

  1. 1. Calculate the total daily insulin requirement

  2. 2. Reduce the dose by 20–30%

  3. 3. Give this dose once daily as human monotard (usually at night)

  4. 4. Check BMs pre-dose and if symptomatic

  5. 5. Adjust the dose as necessary

Further information:

Palliative Medicine

Boyd K Diabetes mellitus in hospice patients: some guidelines (1993) 7 p.163–4.

Neurological and orthopaedic problems


Difficulty with articulation due to inco-ordination or weakness of the musculature of speech. Language is normal. Ask to repeat ‘baby hippopotamus’ or ‘British constitution’ . Treat the cause if possible otherwise, support with speech therapy and aids to communication.


  • Cerebellar disease

    – slurring as if drunk. Speech is irregular in volume and scanning in quality.

  • Extrapyramidal disease

    e.g. Parkinson’s disease – soft, indistinct, and monotonous.

  • Pseudo-bulbar palsy

    – Patients may present with alteration of speech – typically nasal speech sounding like Donald Duck, difficulty swal-lowing or chewing. The tongue is spastic and jaw jerk ↑. Causes: stroke (bilateral); MS; MND.

  • Bulbar palsy

    – Loss of function of the tongue, muscles of chewing/swallowing ± facial muscles. Examination: flaccid, fasciculating tongue, jaw jerk normal or absent, speech – quiet, hoarse, or nasal. Causes: MND, Guillain-Barré syndrome, alcoholic brain stem myelinolysis (central pontine myelinolysis), brain stem tumours (1° or 2°), syringobulbia, polio, hyponatraemia.


  • Treat reversible causes if possible.

  • Involve the speech therapist early to teach the patient techniques relevant to their own special needs.

  • Various aids to communication are available e.g. lightwriters with or without synthesized voice function. Other computerized systems are available from specialized centres including electronic equipment, telephone devices and communication boards which may be adapted to the physical abilities of the individual patient.

Symptom control and clinical scenarios in palliative careIt is essential to plan ahead – motor function may deteriorate rapidly.

Raised intracranial pressure:

Occurs with 1° or 2° brain tumours.


Characterized by:

  • Headache – worse on lying

  • Vomiting

  • Confusion

  • Diplopia

  • Convulsions

  • Papilloedema


  • Unless a terminal event, refer patients urgently to neurosurgery for assessment. Options include insertion of a shunt or cranial radiotherapy.

  • If no further active treatment is appropriate, start symptomatic treatment – raise the head of the bed, start dexamethasone 16mg/d. (stop if no response in 1wk.), provide analgesia.

Generalized myoclonic twitching:

May occur during the terminal stages of illness and if uraemic. Treat with anticonvulsants (e.g. sodium valproate 300mg bd) if able to manage oral medication. If unable to manage oral medication treat with clonazepam 1–4mg/24h. s/cut, midazolam 20–100mg/24h. s/cut or phenobarbital 200–600mg/24h. s/cut.

Spinal cord compression:

Affects 5% of cancer patients – 70% in the thoracic region. Presentation can be subtle. Maintain a high level of suspicion in all cancer patients who complain of back pain – especially those with known bony metastases or tumours likely to metastasize to bone.


  • Often back pain, worse on movement, appears before neurology.

  • Neurological symptoms/signs can be non-specific – constipation, weak legs, urinary hesitancy.

  • Lesions above L1 (lower end of spinal cord) may produce UMN signs (e.g. ↑ tone & reflexes) and a sensory level.

  • Lesions below L1 may produce LMN signs (↓ tone & reflexes) and peri-anal numbness (cauda equina syndrome).


Prompt treatment (<24 –48h. from 1st neurological symptoms) is needed if there is any hope of restoring function. Once paralysed, <5% walk again. Treat with oral dexamethasone 16mg/d. and refer urgently for assessment and surgery/radiotherapy unless in final stages of disease.

Bone fractures:

Common in advanced cancer due to osteoporosis, trauma as a result of falls, or metastases. Have a low index of suspicion if a new bony pain develops.

Symptom control and clinical scenarios in palliative careIn the elderly, fracture of a long bone can present as acute confusion.


  • Analgesia

  • Unless in a very terminal state, confirm the fracture on x-ray and refer to orthopaedics or radiotherapy urgently for consideration of fixation (long bones, wrist, neck of femur) and/or radiotherapy (rib fractures, vertebral fractures).

Venous thromboembolism

Risk factors for venous thromboembolism:

  • Malignancy (∼50%–10% have symptoms)

  • Age >40y.

  • Smoking

  • Obesity

  • Immobility

  • Recent long distance travel

  • Recent trauma and/or surgery

  • COC pill/HRT use

  • Heart failure

  • Nephrotic syndrome

  • Inflammatory bowel disease

  • PMH of thromboembolism

  • Inherited clotting disorder

Deep vein thrombosis (DVT):

Any deep vein can clot. Common sites are the limbs, mesentery, cerebral sinus, and retina. DVT in the leg (commonest site) may be proximal – involving veins above the knee – or isolated to the calf veins.


Unilateral leg pain, swelling and/or tenderness ± mild fever, pitting oedema, warmth and distended collateral superficial veins.

Differential diagnosis:

  • Cellulitis

  • Haematoma

  • Ruptured Baker’s cyst

  • Superficial thrombophlebitis

  • Chronic venous insufficiency

  • Venous obstruction

  • Post-thrombotic syndrome

  • Acute arterial ischaemia

  • Lymphoedema

  • Fracture

  • Hypoproteinaemia


Clinical diagnosis is unreliable.

  • Only 50% of DVTs are symptomatic.

  • <50% with clinically suspected DVT have diagnosis confirmed on diagnostic imaging.

The relevance of active management of DVT in patients with advanced disease will depend on the stage of disease and symptoms. If active management is appropriate, refer for further assessment. Many hospitals have rapid access facilities for diagnosis, bypassing conventional admission.

Specialist assessment:

All patients with malignancy fall into a high-risk group and require USS. If USS is positive, diagnosis of DVT is confirmed.

If USS is negative, USS is repeated after 1wk. or the patient is assessed with venography, CT or MRI.

Active management of patients with confirmed DVT:

  • Initial anticoagulation is with low molecular weight heparin (LMWH) followed by oral anticoagulation (warfarin) – usually as an outpatient.

  • LMWH should be continued for at least 4d. and until the INR is in the therapeutic range for ≥2d.. Target INR is 2.5 (range 2–3).

  • Oral anticoagulants ↓ risk of further thromboembolism and should be continued until no longer appropriate in patients with terminal illness.

  • Graduated elastic compression stockings – ↓ risk post-thrombotic leg syndrome by 12–50%.

GP Notes: Anticoagulation without confirmation of diagnosis

It is not uncommon for terminally ill patients to be distressed by:

  • Leg/torso oedema – possible inferior vena cava thrombosis.

  • Acute/increasing breathlessness – possible PE.

In these situations, if there is a high suspicion of venous thromboembolism, it may be justifiable to start anticoagulation before formal diagnosis if the patient is not fit enough for investigation or declines admission. Treatment (particularly for PE) may improve symptoms significantly in <48h. Discuss with palliative care team.

Advice for patients: Information and support for patients

Lifeblood: The Thrombosis Charity

☎ 0207 633 9937

Pulmonary embolus (PE):

Venous thrombi – usually from a DVT – pass into the pulmonary circulation and block blood flow to the lungs.


  • Symptoms:

    Acute dyspnoea, pleuritic chest pain, haemoptysis, syncope.

  • Signs:

    • Hypotension

    • Tachycardia

    • Cyanosis

    • Tachypnoea

    • Pleural rub

    • ↑ JVP

  • Look for a source of emboli – often DVT is not clinically obvious.

Symptom control and clinical scenarios in palliative careHave a high level of suspicion. Patients may have minimal symptoms/signs apart from some pleuritis pain and dyspnoea.

Differential diagnosis:

  • Pneumonia and pleurisy.

  • MI/unstable angina.

  • Other causes of acute breathlessness – acute LVF, asthma, exacerbation of COPD, pneumothorax, shock (e.g. due to anaphylaxis), arrhythmia, hyperventilation.

  • Other causes of acute chest pain – aortic dissection, rib fracture, musculoskeletal chest pain, pericarditis, oesophageal spasm, shingles.


Make a decision whether active management is appropriate. PE may be the terminal event.

Active management:

If suspected, give oxygen as soon as possible and admit as an acute medical emergency. Specialist management involves investigation to prove diagnosis (Ventilation-perfusion (VQ) scan, MRI and/or pulmonary angiography). Thrombolytic therapy is controversial. In all cases of proven PE, anticoagulation is started. In terminally ill patients, warfarin should be continued until no longer appropriate, aiming to keep the INR ≈2.5 (range 2–3).

Superior vena cava (SVC) obstruction:

Due to infiltration of the vessel wall, clot within the superior vena cava or extrinsic pressure. 75% are due to 1° lung cancer. Lymphoma is the other major cause (15%).


  • Shortness of breath/stridor.

  • Headache worse on stooping ± visual disturbance ± dizziness/collapse.

  • Swelling of the face – particularly around the eyes, neck, hands and arms, and/or injected cornea.

  • Examination: look for non-pulsatile distention of neck veins and dilated collateral veins (seen as small dilated veins over the anterior chest wall below the clavicles) in which blood courses downwards.


  • Treat breathlessness (sit patient upright and give 60% oxygen).

  • Treat pain/panic with opioids – 5mg Oramorph® 4 hourly ± benzodiazepine depending on the level of anxiety.

  • Start corticosteroid (dexamethasone 16mg/d.).

  • Refer urgently for oncology opinion. Palliative radiotherapy has a response rate of 70%. Stenting ± thrombolysis is also an option.

Anticoagulation in palliative care

Rapid changes in clinical state, liver involvement, drug interactions and difficulties of monitoring make anticoagulation difficult in patients with advanced disease.

Heparin in the community:

Only use on specialist advice. Usually s/cut low molecular weight heparin (LMWH) is used as it does not need daily monitoring.


  • Patients with cancer taking warfarin have a higher incidence of bleeding than those without cancer.

  • If the patient develops recurrent thrombosis, warfarin is less effective than heparin – discuss transferring to heparin with the local palliative care team or consultant in charge of the patient’s care.

  • Patients on warfarin (for whatever reason) who have cancer and in whom the INR is hard to control, may benefit from being switched to LMWH – discuss with palliative care team or consultant in charge of the patient’s care.

Monitoring warfarin:

Table 5.11. If there is a change in clinical state monitor more frequently until steady state is re-established. Have an explicit system for handling results promptly, making informed decisions on further treatment and testing, and communicating results to patients. Monitor the process with regular audit.

Table 5.11 Warfarin therapy: Recall periods during maintenance therapy


Recall interval and action

1 INR high

Symptom control and clinical scenarios in palliative careIf INR > 8 – admit

↑ risk of bleeding. Stop treatment for 1–3d. (max 1wk. in prosthetic valve patients) and restart at a lower dose. Recall 7–14d.

1 INR low

↑ risk of thromboembolism. ↑ dose and recall in 7–14d.

1 therapeutic INR

Recall 4wk.

2 therapeutic INRs

Recall 6wk. (maximum interval if prosthetic heart valve)

3 therapeutic INRs

Recall 8wk.*

4 therapeutic INRs

Recall 10wk.*

5 therapeutic INRs

Recall 12wk.*

* Except prosthetic heart valves where maximum recall interval is 6wk.

Terminal situation:

If the patient is clearly in the terminal stage, both warfarin and LMWH can be stopped.

GMS Contract

Anticoagulation monitoring may be provided by practices as a national enhanced service ( [link]).

Table 5.12 Indications for oral anticoagulation and target INR


Target INR(target range)

Duration of treatment


Mechanical prosthetic heart valves:

1st generation

3.5 (3.0–4.0)

Long term

2nd second generation

3.0 (2.5–3.5)

Rheumatic mitral valve disease

2.5 (2.0–3.0)

Long term

Valvular AF and AF due to congenital heart disease or thyrotoxicosis

2.5 (2.0–3.0)

Long term

Non-valvular AF and medium/high risk of stroke

2.5 (2.0–3.0)

Long term

Dilated cardiomyopathy

2.5 (2.0–3.0)

Long term

Mural thrombus post MI

2.5 (2.0–3.0)



2.5 (2.0–3.0)

3wk. before procedure and for 4wk. after procedure

Venous thromboembolism:

1st PE/DVT and persistent risk factors e.g. cancer, immobility

2.5 (2.0–3.0)

Long term

Prophylaxis of recurrent DVT/PE

occurring on warfarin

3.5 (3.0–4.0)

Long term

occurring off warfarin

2.5 (2.0–3.0)

Other disorders:

Inherited thrombophilia with no previous thrombosis

2.5 (2.0–3.0)

Anticoagulate for high-risk activities e.g. surgery

Inherited thrombophilia with previous episode of thrombosis

2.5 (2.0–3.0)

Long term

Antiphospholipid syndrome


Long term

Symptom control and clinical scenarios in palliative careWarfarin can be a dangerous drug:
  • It causes numerous admissions every year with bleeding.

  • It interacts with a large number of drugs, including aspirin, some antibiotics, cimetidine, corticosteroids, and NSAIDs.

Further information:


Antithrombotic therapy (1999) 

British Journal of Haematology

Guidelines on oral anticoagulation (3rd edition – 1999) 101: 374–87. 


Lymphoedema is due to obstruction of lymphatic drainage resulting in oedema with high protein content. It usually affects a limb but may affect more than one limb, the head, trunk, or genitals.

Risk factors:

  • ♀>♂

  • ↑ with age

  • Obesity

  • Lack of physical exercise


  • Axillary, groin, or intrapelvic tumour.

  • Treatment of tumour – axillary or groin surgery, postoperative infection, or radiotherapy.

  • Rarely primary (congenital abnormality of lymph tissue) or secondary to DVT, trauma, infection, or inflammatory arthritis.


  • Swollen limb ± pitting

  • Impaired limb mobility and function

  • Discomfort/pain related to tissue swelling and/or shoulder strain

  • Neuralgia pain – especially when axillary nodes are involved

  • Psychological distress


Untreated lymphoedema becomes increasingly resistant to treatment due to chronic inflammation and subcutaneous fibrosis.

Avoid injury:

In at-risk patients (e.g. patients who have had breast cancer with axillary clearance) or those with lymphoedema, injury to the limb may precipitate or worsen lymphoedema. Avoid sunburn and cuts (e.g. wear gloves for gardening). Do not take blood from the limb or use the limb for IV access, vaccination or BP measurement.

Skin hygiene:

  • Keep the skin in good condition with moisturisers e.g. aqueous cream.

  • Treat fungal infections with topical agents e.g. clotrimazole cream.

  • Cellulitis is a common complication and causes rapid ↑ in swelling. Treat with oral antibiotics (e.g. penicillin V 500mg qds). If ≥2 episodes of cellulitis consider prophylactic antibiotics e.g. penicillin V 250mg bd.

External support:

  • Intensive support can be provided with compression bandages – refer to specialist physiotherapy or the palliative care team.

  • Maintenance therapy with a lymphoedema sleeve is helpful – contact the palliative care team or breast care specialist nurse for information.


Advise gentle daily exercise of the affected limb, gradually increasing range of movement. Symptom control and clinical scenarios in palliative carePatients should wear compression bandages or a lymphoedema sleeve whilst doing their exercises.


Very gentle finger tip massage in the line of drainage of the lymphatics can help – refer to specialist physiotherapist for advice.


If the condition develops/deteriorates after corticosteroid or NSAID use, or if there is a venous component, consider trial of diuretics e.g furosemide 20mg od. Otherwise, diuretics are of no benefit.

Figure 5.6 Lymphoedema of the right arm

Figure 5.6
Lymphoedema of the right arm

Reproduced with permission of Harlington Hospice 

Advice for patients: Information and support for patients and carers

Lymphoedema Support Network ☎ 020 7351 0990  Online support network 

Information leaflets on lymphoedema:

Skin Care


Royal Marsden


Further information:


Badger et al.. Physical therapies for reducing and controlling lymphoedema of the limb (2004).

Wound care

Bed sores:

  • Due to pressure necrosis of the skin.

  • Immobile patients are at high risk – especially if frail ± incontinent.

  • Likely sites of pressure damage – shoulder blades, elbows, spine, buttocks, knees, ankles, and heels.

  • Bed sores heal slowly in terminally ill patients and are a source of discomfort and stress for both patients and carers (who often feel guilty that a pressure sore is a mark of poor care).

  • If at risk refer to the DN for palliative care nursing team for advice on prevention of bed sores – protective mattresses and cushions, incontinence advice, advice on positioning and movement.

  • Warn carers to make contact with the DN or palliative care nursing team if a red patch does not improve 24h. after relieving the pressure on the area.

  • Treat aggressively any sores that develop and admit if not resolving.

Wound care:

  • Large wounds can have major impact on quality of life.

  • Patients with advanced disease have major risk factors for development and poor healing of wounds – immobility, poor nutrition, skin infiltration ± breakdown due to malignancy.

  • Skin infiltration causing ulceration or fungating wounds can be particularly distressing.


The primary aim is comfort. Healing is a secondary aim and may be impossible. Always involve the DN and/or specialist palliative care nursing team early. Many hospitals also have wound care specialist nurses who are invaluable sources of advice.

Specific management problems:

Table 5.13

Table 5.13 Common wound management problems




Exclude infection.

Ensure the dressing is comfortable.

Limit frequency of dressing changes.

Ensure adequate background analgesia.

Consider additional analgesia if needed for dressing changes and/or topical opioids on the dressing.

Excessive exudate

Use high-absorbency dressings with further packing on top ± plastic pads to protect clothing.

Change the top layer of the dressing as often as needed but avoid frequent changes of the dressing placed directly on the wound.

Protect the surrounding skin with a barrier cream/spray.

Necrotic tissue

Use desloughing agents.

Referral for surgical debridement may be necessary.


Prevent bleeding during dressing changes by:

  • Avoiding frequent dressing changes.

  • Using non-adherent dressings or dressings which liquefy and can be washed off (e.g. Sorbsan®).

  • Irrigating the wound with saline to remove dressings.

If there is surface bleeding – put pressure on the wound; if pressure is not working try:

  • Kaltostat®

  • Adrenaline – 1mg/ml or 1:1000 on a gauze pad.

  • Sucralfate liquid – place on a non-adherent dressing and apply firmly to the bleeding area.

Consider referral for radiotherapy or palliative surgery (e.g. cautery).


Treat with systemic and/or topical metronidazole.

Charcoal dressings can be helpful.

Seal the wound e.g. with additional layer of clingfilm dressing.

Try disguising the smell with deodorisers (e.g. Nilodor®) used sparingly on top of the dressing – short-term measure. Long-term, the deodorant smell often becomes associated with the smell of the wound for the patient.


Usually chronic and localized.

Irrigate the wound with warm saline or under running water in the shower/bath.

If the surrounding skin is inflamed, swab the wound and send for M, C&S then start oral antibiotics e.g. flucloxacillin 250–500mg qds or erythromycin 250–500mg qds.

Alter antibiotics depending on sensitivities of the organisms grown.

Body image:

Odour, obvious dressings, facial disfigurement and asymmetry can result in altered body image. As a result, patients may become socially isolated and experience difficulties in their relationships with their relatives/friends – including sexual problems.


  • Talk to the patient and carers – give information and explanation.

  • Empathetic listening is often therapeutic in itself.

  • Ensure dressings are as leakproof and/or odourproof as possible.

  • Tailor dressings to the patient’s needs e.g. if going to a social event, avoid bulky or unsightly dressings.

  • Consider counselling and/or management of depression or anxiety associated with altered body image, where necessary.

Methicillin-resistant Staphylococcus aureus (MRSA):

Is difficult to eradicate. If causing the patient problems, discuss management with the local microbiology team. In all cases, warn health care professionals in contact with the patient and any health or social care establishment the patient will visit that the patient is MRSA+ve so that appropriate precautions can be taken to prevent spread to other patients.

Further information:

Tissue Viability Society

Information on bed sores 


Pressure ulcer management (2005) 


From the Latin meaning ‘no sleep’. Describes a perception of disturbed or inadequate sleep. Affects ∼1:4 of the UK population (♀>♂), thought to suffer in varying degrees. Prevalence ↑ with age, rising to 1:2 amongst the over 65s. Causes are numerous – common examples include:

  • Minor, self-limiting:

    travel, stress, shift work, small children, arousal.

  • Psychological:

    > ½ have mental health problems – depression, anxiety, mania, grief, alcoholism.

  • Physical:

    drugs (e.g. steroids), pain, nausea or vomiting, pruritus, tinnitus, sweats, nocturia, breathlessness, restless legs.

Definition of ‘a good night’s sleep’:

  • <30 min. to fall asleep

  • Maintenance of sleep for 6–8h.

  • <3 brief awakenings/night

  • Feeling well rested and refreshed on awakening.


Careful evaluation. Many patients do not have a sleep problem themselves but a relative feels there is a problem e.g. the retired milkman continuing to wake at 4a.m.. Others have unrealistic expectations e.g. they need 12h. sleep/d.. Reassurance alone may be all that is required.

For genuine problems:

  • Eliminate as far as possible any physical problems preventing sleep

    e.g. treat asthma; give long acting pain killers to last the whole night; treat nausea/vomiting ( [link]).

  • Treat psychiatric problems

    e.g. depression, anxiety.

  • Sleep hygiene

    Box 5.9

  • Relaxation techniques

    – Audiotapes (borrow from libraries or buy from pharmacies); relaxation classes (often offered by local recreation centres/adult education centres/palliative care services); many physiotherapists can teach relaxation techniques.

  • Consider drug treatment:

    Last resort. Benzodiazepines may be prescribed for insomnia ‘only when it is severe, disabling, or subjecting the individual to extreme distress.’

Drug treatment:

Benzodiazepines (e.g. temazepam), zolpidem, zopiclone and low-dose TCA (e.g. amitriptyline 25–50mg) nocte are all commonly prescribed for patients with insomnia.

  • Side effects:

    amnesia and daytime somnolence. Most hypnotics do affect daytime performance and may cause falls in the elderly (use with care and only in low doses). Warn patients about their effect on driving and operating machinery.

  • Only prescribe a few weeks’supply at a time due to potential for dependence and abuse.

Symptom control and clinical scenarios in palliative careDon’t forget the carer who will often also have fragmented nights but still have to perform caring tasks during the day.

Complications of insomnia:

↓ quality of life; ↓ concentration and memory affecting performance of daytime tasks; relationship problems; risk of accidents. 10% of motor accidents are related to tiredness.

GP Notes: Patients with dementia

  • Tend to sleep less deeply and wake more frequently.

  • Often need constant reassurance and to sleep in a lit room to minimize disorientation.

  • Hypnotics may aggravate the situation by increasing confusion.

  • Alternatives include haloperidol 0.5–2mg or risperidone 0.5–1mg – give in the early evening to allow time to act.

Symptom control and clinical scenarios in palliative careRisperidone should not be used if there is a history of cerebrovascular disease.

Advice for patients: information and support

Royal College of Psychiatrists. Patient information sheets 

Acute confusional states (delirium)

Common condition – particularly amongst elderly patients. May occur de novo or be superimposed upon chronic confusion of dementia resulting in sudden worsening of cognition.


  • Global cognitive deficit with onset over hours/days.

  • Fluctuating conscious level – typically worse at night/late afternoon.

  • Impaired memory – on recovery, amnesia of the events is usual.

  • Disorientation in time and place.

  • Odd behaviour – may be underactive, drowsy and/or withdrawn or hyperactive and agitated.

  • Disordered thinking – often slow and muddled ± delusions (e.g. accuse relatives of taking things).

  • Disturbed perceptions – hallucinations (particularly visual) are common.

  • Mood swings.


Can be difficult. If possible, do a thorough general physical examination to exclude treatable causes.

Possible causes:

Table 5.14

Table 5.14 Causes of acute confusion


Particularly UTI, pneumonia; rarely encephalitis, meningitis


Opiates, sedatives, steroids, L-dopa, anticonvulsants, recreational drugs, digoxin or lithium toxicity


Hypoglycaemia, uraemia, liver failure, hyper-calcaemia, other electrolyte imbalance (rarer)

Alcohol or drug withdrawal


e.g. severe pneumonia, exacerbation of COPD, cardiac failure


MI, stroke, TIA


Space-occupying lesion (e.g. cerebral metastasis), raised intracranial pressure, head injury (especially subdural haematoma)

Thyroid disease

Hyper- or hypothyroidism



Temporal lobe epilepsy, post-ictal state



Urinary retention

Nutritional deficiency

B12, thiamine or nicotinic acid deficiency

Differential diagnosis:

  • Deafness

    – may appear confused.

  • Dementia

    – longer history and lack of fluctuations in conscious level – in practice may be difficult to distinguish especially if you come across a patient who is alone and can give no history.

  • Primary mental illness

    e.g. schizophrenia; anxiety state; depression.


Is aimed at treating all remediable causes.

Admit if:

  • The patient lives alone.

  • The patient will be left unsupervised for any duration of time.

  • If carers (or residential home) are unprepared/unable to continue looking after the patient.

  • If history and examination have indicated a cause requiring acute hospital treatment, admit as an emergency – if necessary under a section.

Possible investigations to consider in the community:

  • Urine – dipstick for glucose, ketones, blood, protein, nitrates and white cells, send for M, C&S.

  • BM to exclude hypoglycaemia.

  • Blood – FBC, ESR, U&E, Ca2+, LFTs, TFTs.

  • ECG.

  • CXR.

Management at home:

  • Acute confusion is frightening for patients and carers – reassure and support them.

  • Treat the cause if clinically appropriate e.g. antibiotics for UTI or chest infection.

  • Try to avoid sedation as this can make confusion worse. Where unavoidable use haloperidol 1–2mg prn or lorazepam 0.5–1mg prn.

  • Involve district or palliative care nursing services e.g. to provide incontinence aids, cot sides, moral support.

  • If the cause does not become clear despite investigation, or the patient fails to improve with treatment, and the patient is not near to death, admit for further investigation and assessment.

  • If a terminal event –  [link].

Psychiatric problems


All patients with terminal disease are anxious at times for a variety of reasons including fear of uncontrolled symptoms and of being left alone to die. When anxiety starts interfering with quality of life, intervention is justified.


Non-drug measures:

often all that is needed:

  • Acknowledgement of the patient’s anxiety.

  • Full explanation of questions + written information as needed.

  • Support – self-help groups, day care, patients groups, specialist home nurses (e.g. Macmillan nurses).

  • Relaxation training and training in breathing control.

  • Physical therapies e.g. aromatherapy, art therapy, exercise.

Drug measures:

  • Acute anxiety:

    Try lorazepam 1–2mg sl prn or diazepam 2–10mg prn.

  • Chronic anxiety:

    Try an antidepressant e.g. sertraline 50mg od. Alternatives include regular diazepam e.g. 5–10mg od/bd, haloperidol 1–3mg bd/tds or β‎–blockers e.g. propranolol 40mg od–tds – watch for postural hypotension.

If anxiety is not responding to simple measures, seek specialist help from either the psychiatric or palliative care team.


A terminal diagnosis makes patients sad. 10–20% of terminally ill patients develop clinical depression but, in practice, it is often difficult to decide whether a patient is depressed or just appropriately sad about his/her diagnosis and its implications. Many symptoms of terminal disease (e.g. poor appetite) are also symptoms of depression so screening questionnaires for depression are often unhelpful. If in doubt, a trial of antidepressants can help.

Assessment of suicide risk:

Ask about suicidal ideas and plans in a sensitive but probing way. It is a common misconception that asking about suicide can plant the idea into a patient’s head and make suicide more likely. Evidence is to the contrary.


Non-drug measures:

  • Support e.g. day and/or respite care; carers group; specialist nurse support (e.g. Macmillan nurse; CPN); ↑ help in the home.

  • Relaxation – often ↑ the patient’s feeling of control over the situation.

  • Explanation – of worries/problems/concerns about the future.

  • Physical activity – exercise, writing.

Drug measures:

  • Consider starting an antidepressant – Table 5.15.

  • All antidepressants take ∼2wk. to work.

  • If immediate effect is required, consider using flupentixol 1mg od (beware as can cause psychomotor agitation).

Table 5.15 Drug treatment of depression (BNF 4.3)

Drug group and examples


Selective serotonin re-uptake inhibitors (SSRIs) e.g. fluoxetine 20mg od

Usually first choice as less likely to be discontinued due to side effects.

Warn of possible anxiety and agitation and advise patients to stop if significant.

GI side effects, including dyspepsia, are common.

Tricyclic anti-depressants (TCAs) e.g. lofepramine 70mg od/bd/tds

Titrate dose up from low dose until the patient feels it is helping, or until side effects intrude.

Common side effects include drowsiness, dry mouth, blurred vision, constipation, urinary retention and sweating.

Monoamine oxidase inhibitors (MAOIs) e.g. phenelzine 15mg tds

MAOIs should not be started until at least 1–2wk. after a tricyclic has been stopped (3wk. in the case of clomipramine or imipramine).

Other antidepressants should not be started for 2wk. after treatment with MAOIs has been stopped (3wk. if starting clomipramine or imipramine).

Serotonin and nonadrenaline re-uptake inhibitors (SNRIs) e.g. venlafaxine 37.5mg bd

Effective antidepressants with side effect profile similar to SSRIs.

St. John’s Wort

May be effective in mild depression but formulations vary widely in potency.

Side effects include dry mouth, gastrointestinal symptoms, fatigue, dizziness, skin rashes and ↑ sensitivity to sunlight.

Interacts with many drugs including antidepressants (especially SSRIs – sweating, shivering, muscle contractions), anticonvulsants (↓ effects), warfarin, oral contraceptives, ciclosporin, digoxin and theophylline.

Symptom control and clinical scenarios in palliative careDo not use concurrently with prescription antidepressants; discontinue 2wk. prior to surgery due to theoretical risk of interaction with anaesthetic agents.

If not responding, or suicidal, refer for psychiatric opinion.

GP Notes: Assessment of anxiety


  1. 1. Is it severe?

  2. 2. Is it long-standing?

  3. 3. Is it due to alcohol withdrawal?

  4. 4. Is it situational?

  5. 5. Is it related to a specific fear?

  6. 6. Is the family anxious?

Chronic obstructive pulmonary disease (COPD)

Slowly progressive disorder characterized by airflow obstruction. COPD is the commonest chronic respiratory disorder requiring palliation. Many symptoms experienced by cancer patients and patients with COPD are similar: cancer patients’symptoms may be more severe, but those of COPD patients tend to be more prolonged.


  • Shortness of breath on exertion – use an objective measure e.g. MRC dyspnoea scale (Table 5.16) to grade breathlessness

  • Chronic cough

  • Regular sputum production

  • Frequent winter ‘bronchitis’

  • Wheeze

  • Weight ↓

  • Waking at night

  • Ankle swelling

  • Fatigue

Table 5.16 MRC Dyspnoea Scale


Degree of breathlessness related to physical activity


Not troubled by breathlessness except on strenuous exercise


Short of breath when hurrying or walking up a slight hill


Walks slower than contemporaries on level ground because of breathlessness or has to stop for breath when walking at own pace


Stops for breath after walking about 100m or after a few minutes on level ground


Too breathless to leave the house or breathless on dressing/undressing

Reproduced with permission of the Medical Research Council.


Possible signs in the late stages:

  • Hyperinflated chest ± poor chest expansion on inspiration

  • ↓ crico-sternal distance

  • Hyper-resonant chest with ↓ cardiac dullness on percussion

  • Use of accessory muscles

  • Paradoxical movement of lower ribs

  • Tachypnoea

  • Wheeze or quiet breath sounds

  • Pursing of lips on expiration (pursed lip breathing)

  • Peripheral oedema

  • Cyanosis

  • ↑ JVP

  • Cachexia


Predicts prognosis but not disability/quality of life – Table 5.17.

Table 5.17 Severity of COPD and expected clinical picture


Clinical state



Cough but little or no breathlessness. No abnormal signs. No ↑ use of services

FEV1 50–80% predicted


Breathlessness, wheeze on exertion, cough ± sputum and some abnormal signs. Usually known to GP – intermittent complaints

FEV1 30–49% predicted


SOBOE. Marked wheeze and cough. Usually other signs too. Likely to be known to GP and hospital consultant with frequent problems/admissions

FEV1 <30% predicted

Non-drug therapy:

  • Educate the patient and family about the disease, medication and self-help strategies.

  • Smoking cessation:

    Most important method to improve outcome£.

  • Vaccination:

    All patients with COPD should have influenza and pneumococcal vaccination£.

  • Exercise:

    Lack of exercise ↓ FEV1. Pulmonary rehabilitation is of proven benefit – refer via respiratory physician if available locally.

  • Nutrition:

    Weight ↓ in obese patients improves exercise tolerance. Consider food supplements if cachexic.

Drug therapy:

Document effects of each drug treatment on symptoms, quality of life and lung function as tried – Figure 5.7.

Figure 5.7 Drug management of COPD

Figure 5.7
Drug management of COPD


  • • Phosphodiesterase type 4 inhibitors (e.g. cilomilast) – insufficient evidence of effectiveness.

  • • Tiotropium is a long-acting anticholinergic bronchodilator. Its place in management is not yet established.

  • • Antibiotics have a role in treatment of acute exacerbations of COPD. No evidence that helpful as prophylaxis.

  • • Oral steroids are used in the treatment of acute exacerbations. Avoid long term oral steroids if possible. Occasionally necessary for severe COPD.

Palliative measures:

If standard treatments (e.g. bronchodilators, antibiotics, corticosteroids and/or oxygen therapy) become less effective and do not relieve symptoms, consider palliative treatments.

  • Breathlessness:

    Oral morphine e.g Oramorph® 2.5–5mg 4 hourly often eases resistant breathlessness – titrate dose upwards as needed. For patients with CO2 retention, careful monitoring is vital, and frequency of dosing may need to be reduced. Prescribe a laxative concurrently.

  • Anxiety:

    Being breathless is frightening. Anxiety can exacerbate breathlessness. A low dose benzodiazepine can be helpful e.g. lorazepam 1–2mg sl prn. Do not use diazepam as, even at low doses, it accumulates due to its long half life.

GMS Contract


The practice can produce a register of patients with COPD

3 points


% of all patients with COPD diagnosed after 01/04/08 in whom the diagnosis had been confirmed by post bronchodilation spirometry

5 points



% of COPD patients with a record of FEV1 in the previous 15mo.

7 points



% of patients with COPD who have had a review, undertaken by a healthcare professional, including an assessment of breathlessness using the MRC dyspnoea score in the preceding 15 mo.

9 points



% of COPD patients who have had influenza vaccine in the preceding 1st September – 31st March

6 points


Influenza and pneumococcal vaccination may be administered to at risk patients as a directed enhanced service ( [link])

Essential reading:


National clinical guideline on management of chronic obstructive pulmonary disease in adults in primary and secondary care (2004). Thorax 59 (Suppl.1): 1–232.

Patient support:

British Lung Foundation

☎ 08458 50 20 20 

Long-term oxygen therapy (LTOT):

Only prescribe after evaluation by a respiratory physician. Refer patients with:

  • Severe airflow obstruction (FEV1 <30% – consider if 30–49%)

  • Cyanosis

  • Polycythaemia

  • Peripheral oedema

  • ↑ JVP

  • Hypoxaemia (oxygen saturation ≤92% breathing air)

Treatment for >15h./d. ↑ survival and quality of life. Ambulatory oxygen therapy can ↑ exercise tolerance in some patients. Always warn patients about the fire risks of having pure oxygen in their home.

Acute exacerbations of COPD:

Worsening of previous stable condition. 30% have no identifiable cause – other causes include:

  • Infections:

    viral upper and lower respiratory tract infections e.g. common cold, influenza; bacterial lower respiratory tract infections.

  • Pollutants

    e.g. nitrous oxide, sulphur dioxide, ozone.

Differential diagnosis:

  • Pneumonia

  • LVF/pulmonary oedema

  • Lung cancer

  • Pleural effusion

  • Recurrent aspiration

  • Pneumothorax

  • PE

  • Upper airway obstruction


  • Pulse oximetry:

    If available can be used as a measure of severity (saturation ≥92% breathing air suggests hypoxaemia – consider admission) and to monitor progress.

  • CXR

    : If diagnostic doubt and/or to exclude other causes of symptoms.

  • Sputum culture:

    Not recommended routinely in the communityG.


Decide whether to admit – Table 5.18

Table 5.18 Deciding whether to treat acute exacerbations at home or in hospital. The more features in the ‘treat in hospital column’, the more likely the need for admission unless considered a terminal event


Treat at home

Treat in hospital *

Ability to cope at home






General condition


Poor – deteriorating

Level of activity


Poor/confined to bed




Worsening peripheral oedema



Level of consciousness



Already receiving LTOT



Social circumstances


Living alone/not coping

Acute confusion



Rapid rate of onset



Significant co-morbidity (e.g. cardiac disease, IDDM)



Changes on CXR (if available)



* Hospital-at-home schemes and assisted discharge schemes are a suitable alternative.

Reproduced from Thorax (2004) 59(Suppl 1), pp. 1–232, with permission of BMJ Publishing Group.

Home treatment of acute exacerbations:

  • Add or ↑ bronchodilators.

    Consider this option if inhaler device and technique are appropriate.

  • Start antibiotics:

    Use broad spectrum antibiotic e.g. erythromycin 250–500mg qds if sputum becomes more purulent or clinical signs of pneumonia or consolidation on CXR.

  • Oral corticosteroids:

    Start early in the course of the exacerbation if ↑ breathlessness which interferes with daily activities. Dosage – 30mg/d. prednisolone for 1–2wk. Consider osteoporosis prophylaxis with a bisphosphonate if frequent courses are required.

Advanced heart failure

Heart failure is the common end-stage of a variety of heart diseases. Unlike cancer, pain is not usually a major problem, but oedema and breathlessness through fluid overload is often a dominant feature. In most other respects, management is similar.


  • Cachexia and muscle wasting

  • ↑ respiratory rate ± cyanosis

  • ↑ pulse rate ± pulsus alternans

  • Cardiomegaly and displaced apex beat ± right ventricular heave

  • ↑ JVP

  • 3rd heart sound

  • Basal crepitations ± pleural effusions and/or wheeze

  • Pitting oedema of the ankles

  • Hepatomegaly ± jaundice

  • Ascites


  • Arrhythmias – especially AF and VT

  • Stroke or peripheral embolus

  • DVT/PE

  • Malabsorption

  • Hepatic congestion/dysfunction

  • Muscle wasting


Progressive deterioration to death. Up to 50% die suddenly – probably due to arrhythmias. Mortality:

  • Mild/moderate heart failure – 20–30% 1y. mortality.

  • Severe heart failure – >50% 1y. mortality.

A number of factors correlate with the prognosis:

  • Clinical:

    the worse the patient’s symptoms the worse the prognosis.

  • Haemodynamics:

    the lower the cardiac index, stroke volume and ejection fraction, the worse the prognosis.

  • Biochemical:

    strong inverse correlations with certain endocrine markers; and hyponatraemia is associated with a poorer prognosis.

  • Arrhythmias:

    frequent ventricular ectopics or VT on ambulatory ECG indicate a poor prognosis.

Non-drug measures:

  • Educate

    – about the disease, current/expected symptoms and need for treatment. Discuss prognosis. Support with written information.

  • Discuss ways to make life easier

    e.g. benefits, mobility aids, blue disability parking badge. Consider referral to social services for assessment for home modification ± services such as home care.

  • Diet

    – ensure adequate calories (consider carlorie and vitamin supplements), small frequent meals, ↓ salt, ↓ weight if obese, restrict alcohol (though a small amount is beneficial).

  • Lifestyle measures

    – smoking cessation; regular exercise.

  • Restrict fluid intake

    – if severe heart failure restrict intake to <1500ml/d.

  • Vaccination

    – influenza and pneumococcal vaccination£.

  • Assess for depression

    – common among patients with heart failure.

Advice for patients: Patient experiences of chronic heart failure


‘When I started getting alarmingly puffy, and especially alarming was getting breathless lying down in bed and I thought well this is not right, this is something wrong … I went down to the local doctor … and she decided to send me for a scan in the hospital.’

‘Shortness of breath, you know, wanting to do things more or less like out of the ordinary, such as gardening, you know. Out of my ordinary scope, of course, I can’t, because shortness of breath steps in and you can feel your heart sometimes, you know? You can feel it’s there, it starts to … you can feel the beat. And when I start to feel the beat then I know it’s time to slow down.’

‘If I’ m lying flat then often I’ ll wake up probably breathless but maybe with a coughing attack. Coughing is a real problem for me when I’ m flat. And I wake up also early in the morning, when I wake up 4 o’ clock, 5 o’ clock, 6 o’ clock but I’ ll often to off to sleep again for a bit, but I’ m always up by 7. Just to go to bed and have an interrupted nights sleep and wake up at 8 o’ clock would be delicious, but it isn’t happening, and we are nearly two years in now, so I don’t think it’s going to come back.’

Work tolerance:

‘I can do half as much as I used to. I can’t do hard work now, or heavy work, no. I can do light work, and I could go all day, but I couldn’t do hard work, no.’


‘It’s not a “ tired” tired where you want to go to bed and sleep, it’s a weary tired as if everything is an effort. It’s a tired where you don’t want to go to bed and sleep, you just want to…I don’t know…it’s like a weary tired, that’s the only way I can describe it really. I can’t say it’s a “ go to sleep” tired. I don’t really know, it’s just an “ I must sit down” tired, “ I just can’t take another step” tired.’

Information for patients and their carers

British Heart Foundation ☎ 0300 330 3311 

Healthtalkonline Database of personal and health experiences: heart failure 

Further information:


Chronic heart failure (2003) 

Davis et al.

ABC of Heart Failure (2006). BMJ Books. ISBN 0727916440

Drug treatment:

Aims to:

  • Improve symptoms – diuretics, digoxin and ACE inhibitors£ and

  • Improve survival – ACE inhibitors£, β‎-blockers, oral nitrates plus hydralazine, spironolactone.

Algorithm for drug treatment of heart failure:

Figure 5.8

Figure 5.8 NICE algorithm for pharmacological treatment of symptomatic heart failure due to left ventricular systolic dysfunction

Figure 5.8
NICE algorithm for pharmacological treatment of symptomatic heart failure due to left ventricular systolic dysfunction

Reproduced from Chronic Heart Failure: Management of Chronic Heart Failure in Adults in Primary and Secondary Care (2003) with permission of NICE. Full document available at 

Palliative measures:

Use to supplement active treatment aimed at controlling symptoms:

  • Consider oxygen therapy – weigh up pros and cons – fire risk, inconvenience, upheaval of installation vs. improvement in breathing. Refer as necessary.

  • Consider opioids – Oral morphine e.g Oramorph® 2.5–5mg 4 hourly often eases the sensation of resistant breathlessness – titrate dose upwards as needed. For patients with renal failure, careful monitoring is vital, and frequency of dosing may need to be reduced. Prescribe a laxative concurrently.


Review as required. Check:

  • Clinical state

    – functional capacity, fluid status, cardiac rhythm, cognitive and nutritional status, mood.

  • Medication

    – ensure drug record is up to date, review compliance and side effects, change drugs if clinical circumstances/best practice alter.

  • Blood

    – U&E and creatinine.

GMS Contract

HF 1

The practice can produce a register of patients with heart failure

4 points

HF 2

% of patients with a diagnosis of heart failure (diagnosed after 1.4.2006) which has been confirmed by an echocardiogram or by specialist assessment

6 points


HF 3

% of patients with a current diagnosis of heart failure due to left ventricular dysfunction who are currently treated with an ACE inhibitor or Angiotensin Receptor Blocker, who can tolerate therapy and for whom there is no contraindication

10 points


QoF points may also be available for screening for depression in patients with heart disease, secondary prevention of cardiovascular disease, and treatment of hypertension, and diabetes.

Influenza and pneumonococcal vaccination may be administered to high risk patients as a directed enhanced service ( [link]).

Further information:


Chronic heart failure (2003) 


Diagnosis and treatment of heart failure due to left ventricular systolic dysfunction (1999) 

Advice for patients: Information and support

British Heart Foundation ☎ 0845 0708 070 

Motor neurone disease (MND)

Motor neurone disease is a degenerative disorder of unknown cause affecting motor neurones in the spinal cord, brain stem and motor cortex.

Prevalence in the UK ∼4.5/100,000 population ♂:♀ ≈3:2. Peak age of onset ≈60y. 10% have a FH.

Patterns of disease:

There are three recognized patterns of MND:

  • Amyotrophic lateral sclerosis (ALS)

    (50%) – combined LMN wasting and UMN hyperreflexia.

  • Progressive muscular atrophy

    (25%) – anterior horn cell lesions affecting distal before proximal muscles. Better prognosis than ALS.

  • Progressive bulbar palsy

    (25%) – loss of function of brainstem motor nuclei (LMN lesions) resulting in weakness of the tongue, muscles of chewing/swallowing and facial muscles.

Clinical picture:

Combination of progressive upper and/or lower motor neurone signs affecting >1 limb or a limb and the bulbar muscles.


  • Stumbling (spastic gait, foot-drop)

  • Tiredness

  • Muscle wasting

  • Weak grip

  • Weakness of skeletal muscles

  • Cramp

  • Fasciculation of skeletal muscles

  • Fasciculation of the tongue

  • Difficulty with speech (particularly slurring, hoarseness or nasal or quiet speech)

  • Difficulty with swallowing

  • Aspiration pneumonia.

Symptom control and clinical scenarios in palliative careMND never affects external ocular movements (cranial nerves III, IV and VI). There is never any sensory loss.


Refer to neurology for exclusion of other causes of the symptoms and confirmation of diagnosis. MND is incurable and progressive. Death usually results from ventilatory failure 3–5y. after diagnosis.

Drug therapy:

  • Riluzole (50mg bd) is the only drug treatment licensed in the UK.

  • Evidence suggests that it may extend time to mechanical ventilation for patients with ALS. It may also slow functional declineN, but effects on survival are unproven.

  • It should be initiated by a specialist with experience of MNDN.

  • Monitoring of liver function is essential – monthly for the first 3mo.; then 3 monthly for 9mo.; then annually thereafter.


  • Involve relevant agencies early e.g. DN, social services, carer groups, self-help groups.

  • Apply for all relevant benefits ( [link]).

  • Discuss the future, and the patient’s wishes for the time when they become incapacitated, with patient and carer(s).

  • Regular review to help overcome any new problems encountered is helpful for patients and carers.

Symptom relief:

  • Spasticity:

    baclofen, tizanidine and botulinum toxin may all be effective.

  • Drooling:

    Try propantheline 15–30mg tds po or amitriptyline 25–50mg tds po or atropine eye drops 9 drops po.

  • Dysphagia:

    Blend food, discuss nasogastric tubes/PEG ( [link]).

  • Depression:

    Common – reassess support, consider drug treatment and/or counselling.

  • Joint pains:

    Provide analgesia.

  • Respiratory failure:

    Prophylactic antibiotics may prevent infection – appropriateness depends on clinical state. Discuss tracheostomy/ ventilation – weigh pros and cons of prolongation of life vs. prolongation of discomfort. In some cases for example for patients suffering nightmares or morning headache – limited ventilation (e.g. non-invasive positive pressure ventilation at night) may be appropriate even if ventilation is not wanted to prolong life.


Offer influenza and pneumococcal vaccination to all MND patients.

Further information:


Riluzole for motor neurone disease – full guidance (2001 and review 2004). 

Advice for patients: Support for patients and carers

Motor Neurone Disease Association ☎ Helpline: 08457 626262 

Brain and Spine Foundation ☎ 0808 808 1000 

GMS Contract

Influenza and pneumococcal vaccination may be offered by GMS practices as a directed enhanced service –  [link].

Multiple sclerosis (MS)

Multiple sclerosis (MS) is a chronic disabling neurological disease due to an autoimmune process of unknown cause. Characterized by formation of patches of demyelination (“ plaques” ) throughout the brain and spinal cord. There is no peripheral nerve involvement.

It is the most common neurological disorder of young adults with a lifetime risk of 1:1000. Peak age of onset is 20-40y. ♀:♂≈ 2:1. There is a marked geographical variation – prevalence ↑ with latitude.


Depends on the area of CNS affected. Take a careful history – although a patient usually presents with a single symptom, history may reveal other episodes that have gone unheralded. Isolated neurological deficits are never diagnostic. The hallmark of MS is a series of neurological deficits distributed in time and space not attributable to other causes. Predominant areas of demyelination are optic nerve, cervical cord and periventricular areas.

Common features:

  • Pain on eye movement (optic neuritis)

  • Visual disturbance – ↓, blurring or double vision

  • ↓ balance

  • ↓ coordination

  • Sensory disturbance (e.g. numbness, tingling)

  • Pain (e.g. trigeminal neuralgia)

  • Fatigue

  • Depression

  • Transverse myelitis

  • Problems with speech (e.g. slurred or slow)

  • Bladder problems (e.g. frequency, urgency, incontinence)

  • Constipation

  • Sexual dysfunction (e.g. impotence)

  • Cognitive changes (e.g. loss of concentration, memory problems)

  • Dysphagia

Symptom control and clinical scenarios in palliative careSymptoms may be worsened by heat or exercise.


  • Benign MS

    (rare): Few mild attacks and then complete recovery. There is no deterioration over time and no permanent disability.

  • Relapsing-remitting MS (RRMS):

    90% patients. Episodes of sudden ↑ in neurological symptoms or development of new neurological symptoms with virtually complete recovery after 4-6 wk.. With time remissions become less complete and residual disability accumulates.

  • Secondary progressive MS (SPMS):

    After ∼ 10y. about ½ the patients with relapsing-remitting disease begin a continuous downward progression which may also include acute relapses.

  • Primary progressive MS (PPMS):

    10% patients. Steady progression from the outset with increasing disability.


If suspected, refer to neurology for confirmation of diagnosis and support from specialist neurological rehabilitation.

Disease modifying drugs:

↓ frequency and/or severity of relapses by ∼ 30% and slow course of the disease. Options are β‎-interferon (for RRMS and SPMS) and glatiramer (for RRMS only). Prescription must be consultant led under the NHS risk sharing scheme – Table 16.11.

Advice for patients: Patient experiences of MS

‘How MS affects me will be unique to me. It’s a totally unpredictable condition and no two people will follow an identical pattern.’

Advice and support for patients and carers

MS Society ☎ 0808 800 8000 

Table 5.19 Indications for β‎-interferon and glatiramerN




≥ 18y.

≥ 18y.


No contraindications

No contraindications

Walking distance

RRMS: Can walk ≥ 100m without assistance

SPMS: Can walk ≥ 10m without assistance

RRMS: Can walk ≥ 100m without assistance


RRMS: ≥ 2 clinically significant relapses in the last year

SPMS: Minimal ↑ in disability due to gradual progression and ≥ 2 disabling relapses in the past 2y.

RRMS: ≥ 2 clinically significant relapses in the last year

Stop if:

  • Intolerable side effects

  • Pregnant or planning pregnancy

  • ≥2 disabling relapses within a year

  • Inability to walk (± help) persisting ≥ 6 mo.

  • 2° progression with observable ↑ in disability over 6 mo.

  • Intolerable side effects

  • Pregnant or planning pregnancy

  • ≥2 disabling relapse within a year

  • Inability to walk (± help) persisting ≥ 6 mo.

  • 2° progression


monoclonal antibody for treatment of highly active relapsing-remitting MS, despite treatment with -interferon, or rapidly evolving severe relapsing-remitting MS. Prescription must be consultant led. Associated with an ↑ risk of opportunistic infection and progressive multifocal leucoencephalopathy (PML). If new/worsening neurological symptoms/signs refer to neurology immediately to exclude PML

GMS Contract

Influenza and pneumococcal vaccination may be offered by GMS practices as a directed enhanced service –  [link]

Specialized services for patients with MS can be provided as a national enhanced service –  [link]

Acute relapses:

Treat episodes causing distressing symptoms or ↑ limitation with high-dose steroids e.g. prednisolone 500mg–2g od po for 3–5d. Alternatively, refer for high-dose IV steroids. Refer to specialist neurological rehabilitation if there is a residual deficit. If frequent courses of steroids consider osteoporosis prophylaxis.

Symptom relief:

Specialist multidisciplinary support is essential.

Motor impairment:

Aim to maintain physical independence:

  • Involve physiotherapy – often only 2–3 visits are needed.

  • Involve OT – a task-oriented approach is used (e.g. learning how to dress). Can also supply/advise on aids and appliances e.g. velcro fasteners, wheelchairs, adapted cutlery etc.

  • Refer for social services OT assessment if aids, equipment or adaptations are needed for the home.

  • Refer for home care services as necessary.

  • Give information about driving ( [link]) and employment ( [link]).

Spasticity ± muscle and joint contractures:

Treat with physiotherapy (usually involving exercise ± splinting) ± drugs. Anti-spasticity drugs include dantrolene (25mg od), baclofen (5mg tds or rarely through a pump) and tizanidine (2mg od). Botulinum toxin can be directed at specific muscles. Refer via the specialist rehabilitation team.

Communication problems:

Speech therapy assessment is vital. Consider support via dysphasia groups and communication aids e.g. simple pointing board (take advice from speech therapy and OT).

Poor vision:

Refer to an optician in the first instance. If corrected vision is still poor refer for ophthalmology review.

Respiratory infections:

Common. Treat with antibiotics unless in terminal stages of disease. Advise pneumococcal and influenza vaccination£.

Venous thromboembolism:

Common but clinically apparent in <5%. Ensure adequate hydration and encourage mobility. Consider use of aspirin 75–150mg od and compression stockings if immobile. Prophylactic anticoagulation does not improve outcome.

Skin breakdown:

Prevented by: positioning; mobilization; good skin care; management of incontinence; pressure relieving aids (e.g. special mattresses/cushions). Involve community nursing services.

Bladder problems

  • UTI:

    If suspected check urine dipstick ± send MSU for M, C&S and start antibiotics. If >3 proven UTIs in 1y. refer to specialist incontinence service or urology for further assessment.

  • Incontinence:


  • Nocturia:

    desmopressin 100–400mcgm po or 10–40mcgm intranasally nocte may be helpful.

  • Urgency:

    Modify environment e.g. provide commode; try anticholinergic e.g. tolterodine 2mg bd or oxybutynin 5mg tds. If not settling refer for specialist assessment.

GP Notes: New symptoms or limitations


  • Is it due to an unrelated disease? e.g. change in bowel habit might indicate bowel cancer.

  • Is it due to an incidental infection? e.g. UTI, chest infection.

  • Is it due to a relapse? e.g. acute relapse in MS.

  • Is it due to a side effect of treatment? e.g. acute confusion due to steroids or drowsiness due to opioids.

  • Is it part of a gradual progression?

Treat any cause of deterioration identified. If no cause is found, consider re-referring for specialist review and/or referring to the multidisciplinary rehabilitation team involved with the patient.

Advice for patients: Sexual and personal relationships

Problems are common. Useful information sheets and a helpline are available at ☎ 0707 499 3527 

Bowel problems

  • Dysphagia

    : Common. Fluids are more difficult to swallow than semisolids. Formal assessment by trained staff is essential. Feeding through a N-G tube or PEG may be needed long or short term. In terminal disease weigh provision of nutrition against prolongation of poor-quality life.

  • Constipation:

    Difficulty with defaecation or bowels open <2x/wk. – ↑ fluid intake and ↑ fibre in diet. If no improvement use po laxative ± regular suppositories/enemas.

  • Incontinence:

    Exclude overflow due to constipation.


Consider and treat factors that might be responsible:

  • Depression

  • Chronic pain

  • Disturbed sleep

  • Poor nutrition


Review support, diet and medication, encourage graded aerobic exercise, consider a trial of amantadine 200mg/d. to improve symptomsN.

Depression and anxiety:

Common. Non-specific symptoms may be the first presentation of depression or an anxiety disorder. Fatigue, sleep disturbance, and unexplained pain are frequent presentations of underlying depression. Many symptoms of MS are similar to symptoms of depression – if suspected, a trial of antidepressants is worthwhile.


If the patient cries (or laughs) with minimal provocation, consider emotionalism – impairment in the control of crying. Reassure.


60% of patients with MS have chronic pain – 40% of those say their pain is not controlled. Most pain arises from, ↓ mobility. Other causes include: pre-morbid disease (e.g. osteoarthritis), central pain due to neurological damage and neuropathic pain.

  • Neuropathic and central pain – treat with tricyclic antidepressants or anticonvulsants –  [link].

  • Musculoskeletal pain – Try NSAIDs ± paracetamol ± a weak opioid ± physiotherapy. Splints, massage and TENS/acupuncture may also be helpful.

Symptom control and clinical scenarios in palliative careTrials of cannabis/cannabinoids in treatment of MS pain are in advanced stages – meanwhile many patients use illicit supplies to help ease their pain.


Supplementing the diet with 17–23gd. of linoleic acid (a polyunsaturated fat) may ↓ progression of disabilityN. Rich sources of linoleic acid include sunflower, corn, soya and safflower oils.


  • Involve relevant agencies early e.g. DN, social services, carer groups, self-help groups.

  • Apply for all relevant benefits ( [link]).

  • Discuss the future, and the patient’s wishes for the time when they become incapacitated, with patient and carer(s).

  • Regular review to help overcome any new problems encountered is helpful for patients and carers.







Further information:


Diagnosis and management of multiple sclerosis in primary and secondary care (2003) 


HSC 2002/004 Cost-effective provision of disease-modifying therapies for people with MS 

MS Society

A guide to MS for GPs and primary care teams (2006) 

Human immunodeficiency virus (HIV)

Advanced HIV infection is accompanied by immunosuppression or acquired immune deficiency syndrome (AIDS – if CD4 count <200cells/mm3). Patients are at risk from:

  • Opportunistic infections (e.g. pneumococcal infection, TB, CMV, HSV, Pneumocystis carinii, toxoplasmosis and cryptosporidial diarrhoea) and

  • AIDS-associated malignancies (e.g. Kaposi’s sarcoma – usually of lung or skin, lymphoma).

Death from HIV:

Is due to multiple causes, including chronic incurable systemic infections, malignancies, neurological disease, wasting and malnutrition, and multisystem failure.

Management of HIV infectionG:

Specialist treatment is essential.

Antiviral drugs:

3 groups:

  • Nucleoside analogues (e.g. Zidovudine).

  • Non-nucleoside reverse transcriptase inhibitors (e.g. Nevirapine).

  • Protease inhibitors (e.g. Indinavir).

Highly active antiretroviral therapy (HAART) is a combination of ≥3 drugs with ≥1 drug penetrating the blood–brain barrier. Many of the drugs have severe side effects. Adherence to therapy is essential to avoid resistance. Patients who present with clinical manifestations of HIV, CD4 counts <350cells/mm3 or viral loads >30,000 copies are considered for HAART. Treatment failure requires switching or increasing therapy with at least 2 new drugs.

Prophylaxis against opportunistic infection:

Patients with low CD4 counts are started on prophylactic antibiotics:

  • <200cells/mm3Pneumocystis carinii (co-trimoxazole).

  • <100cells/mm3 – toxoplasmosis (co-trimoxazole).

  • <50cells/mm3Mycobacterium avium (azithromycin).

Psychological support and palliative care:

  • Perhaps the most important role of the GP and community services.

  • Patients often lack the support offered for most other terminal illnesses as HIV infection remains stigmatized, usually involves young patients and often affects people in marginalized/minority groups.

  • HIV differs from most other terminal illnesses as other family members/partners are often infected too. Patients may have seen their peers die from HIV infection.

Management of specific problems:

Table 5.20

Table 5.20 Specific symptoms in palliative care of HIV patients and management solutions




Treat with analgesia  [link]

Exclude underlying causes:

OropharyngealCandida, herpes viruses (HSV, CMV, VZ), apthous-type ulcers, malignancy, gingivitis, tooth abscesses

Retrosternal – Oesophageal Candida, infection with CMV or HSV, giant oesophageal ulcers, reflux oesophagitis, Pneumocystis carinii pneumonia

Headache – Toxoplasmosis, cryptococcal meningitis, cerebral lymphoma

Abdominal – Diarrhoea ± infection, AIDS-related sclerosing cholangitis, malignancy (e.g. Kaposi’s sarcoma, lymphoma), drugs (e.g. clarithromycin), constipation

Perianal and perineal – HSV (very common, needs high index of suspicion), Candida, excoriation of skin due to diarrhoea


Send sputum for M, C&S and virology/mycology

Consider CXR to exclude Karopsi’s sarcoma, TB and other chest infections

Treat specific conditions when appropriate. Consider decongestants

Anorexia, nausea, and vomiting

Dietary advice – small meals frequently

Exclude constipation

Review medication

Review Candida treatment

Consider antiemetics –  [link]


Check stool sample for M, C&S to exclude treatable infective causes: Salmonella, Giardia, Campylobacter, Clostridium difficile, CMV

Exclude constipation and drug causes

Consider malabsorption as a cause – pancreatin supplements may help

Diarrhoea caused by untreatable infection e.g. due to Cryptosporidium or Microsporidium or diarrhoea for which no cause can be found can be difficult to control – consider opioids and/or octreotide

Malaise, weakness, pyrexia

Consider drug effects. A trial of steroids may be worthwhile

Dermatitis/ pruritus

Treat the cause where possible e.g.

  • Iron supplements for iron-deficiency anaemia

  • Anti-scabies treatment

  • Topical or systemic antibiotics for folliculitis

Otherwise treat with emollients and antipruritics (e.g. chlorphen-amine 4mg qds prn). Consider a trial of topical steroid cream bd

Other common problems:

Treat symptomatically.

  • Wasting, weakness, and dependency

  • Slowing of mental functions including AIDS-related dementia

  • Loss of libido

  • Premature greying and loss of hair

  • Molluscum contagiosum

  • Progressive visual loss from retinitis

  • Incontinence (especially faecal – may be 2° to diarrhoea)

Advice for patients: Information and support


National AIDS Helpline ☎ 0800 567 123 (24h. helpline)

Terrence Higgins Trust ☎ 0845 1221 200 

Control of infection:

There is an extremely low risk of infection to household contacts and healthcare workers. HIV is present in blood and bodily fluids – advise carers to wear gloves when there is a risk of direct contact with these fluids. Gloves are not needed for normal examination or casual household contact. Linen and cutlery should be washed as normal. Spillages should be cleaned up with household bleach.

Needle-stick injury:

Exposure is significant if the source is HIV +ve, the material is blood or another infectious body fluid (semen, amniotic fluid, genital secretions, CSF) and exposure is caused by inoculation (risk transmission 1:300 if HIV +ve source) or by a splash onto a mucous membrane (risk transmission 1:3000).

Symptom control and clinical scenarios in palliative careImmediate action:

Irrigate site of exposure with running water; establish potential risk of HIV – history of HIV infection and (if possible) blood sample from the source and victim. Refer to A&E immediately for instigation of HIV prevention policy.

Further information:

British HIV Association.

HIV treatment guidelines (2006) 

Health Protection Agency (HPA).



Winning ways: reducing healthcare associated infection in England (2004) 

Medical Foundation for AIDS and Sexual Health HIV in primary care (2004 and revision 2005) 

The last 48 hours

It is notoriously difficult to predict when death will occur. Avoid the trap of predicting or making a guess unless absolutely pushed to do so. Talk in terms of ‘days’ or ‘weeks’ . For example:

‘When we see someone deteriorating from week to week we are often talking in terms of weeks; when that deterioration is from day to day then we are usually talking in terms of days, but everyone is different.’

Symptoms and signs of death approaching:

  • Day-by-day deterioration

  • Gaunt appearance

  • Profound weakness – needs assistance with all care, may be bedbound

  • Difficulty swallowing medicines

  • ↓ intake of food and fluids

  • Drowsy or ↓ cognition – often unable to co-operate with carers

Goals of treatment in the last 48h.:

  • Try to ensure patients are comfortable – physically, emotionally, and spiritually.

  • Make the end of life peaceful and dignified – what is dignified for one patient may not be for another – ask.

  • Support patients and carers so that the experience of death for those left behind is as positive as it can be.

Patients’ wishes:

Dying is a unique event for each individual. Helping to explore a patient’s wishes about death and dying should not be a discussion left to the last 24h.

Advance directives/living wills:


Different cultures:

Different religious and cultural groups have different approaches to the dying process. It is important to be sensitive to cultural and religious beliefs. If in doubt, ask a family member. You are more likely to cause offence by not asking than by asking.

Assessment of a patient’s needs:

Try to discover which problems are causing the patient/carers most concern and address those concerns where possible. Patients often under-report their symptoms and families/carers may misinterpret symptoms.

Physical examination:

Keep examination to a minimum to avoid unnecessary interference. Check:

  • Sites of discomfort/pain suggested by history or non-verbal cues

  • Mouth

  • Bladder and bowel

Psychological assessment:

Find out what the patient wants to know. Gently assessing how the patient feels about their disease and situation can shed light on their needs and distress.


Any investigation at the end of life should have a clear and justifiable purpose (e.g. excluding a reversible condition where treatment would make the patient more comfortable). The need for investigations in the terminal stage of illness is minimal.

GP Notes: Talking about death and dying

Death is a taboo subject and few people feel comfortable discussing it – even though it is natural, certain, and happening all around us all the time.

Opening up discussion can be liberating to patients who then may feel they are being given permission to talk about dying. Families do not like discussions about dying for fear that patients will ‘give up’ .

Sometimes the direct question ‘Are you worried about dying?’ is the most appropriate. Often patients’ biggest fears are groundless and reassurance can be given. Where reassurance cannot be given it is helpful to break the fear down into constituent parts and try to sort out those aspects you can deal with.

Common fears:

  • Fears associated with symptoms

    e.g. pain will escalate to agony; breathing will stop if the patient falls asleep.

  • Emotional fears

    e.g. increasing dependence on family. ‘It would be better if I was out of the way.’

  • Past experience

    e.g. past contact with patients who died with unpleasant symptoms.

  • Preferences about treatment or withholding treatment

    e.g. ‘What if nobody listens to me or they don’t take my wishes seriously?’

  • Fears about morphine

  • Death and dying

    – fears of being dead and the process of dying need to be differentiated.

Referral to specialist palliative care services:

Ideally involve specialist palliative care services before the terminal phase is reached. Referral in the terminal phase is appropriate when:

  • One or more distressing symptoms prove difficult to control

  • There is severe emotional distress

  • There are dependent children and/or elderly vulnerable relatives involved

Review of medication

  • Comfort is the priority. Stop unnecessary medication.

  • Continue analgesia, antiemetics, anxiolytics/antipsychotics and anticonvulsants.

  • Diabetes can be managed with once daily insulin glargine, as needed.

  • Consider alternative routes of drug administration (e.g. syringe driver, patches).

  • Explain changes to relatives/carers.

Symptom control:

Dying patients tolerate symptoms very poorly because of their weakness. Nursing care is the mainstay of treatment. GPs do have a role though:

  • Ensure new problems do not develop e.g. ensure use of appropriate mattresses and measures to prevent bed sores.

  • Treat specific symptoms e.g. dry mouth.

  • Think ahead – discuss treatment options which might be available later e.g. use of a syringe driver, buccal, pr or transcutaneous preparations to deliver medication when/if the oral route is no longer possible, use of strong analgesia that may also have a sedative effect.

  • Ensure there is a clear management plan agreed between the medical and nursing team and the patient/family members. Anticipate probable needs of the patient so that immediate response can be made when the time comes – define clearly what should be done in the event of a symptom arising/worsening; ensure drugs or equipment that may be needed are in the home.

Terminal anguish and spiritual distress

  • Characterized by overwhelming distress.

  • Often related to unresolved conflict, guilt, fears, or loss of control.

Anxiety can be increased if:

  • Patients are unaware of the diagnosis, but feel that people are lying to them.

  • They have certain symptoms such as breathlessness, haemorrhage and constant nausea or diarrhoea.

  • Weak religious conviction – convinced believers and convinced non-believers have less anxiety.

  • There are young dependant children or other dependant relatives.

  • Patients have unfinished business to attend to, such as legal affairs.


Empathic listening can itself be therapeutic. Talk to the patient, if possible, about dying and try to break down fears into component parts. Address those fears that can be dealt with. As a last resort, and after discussion with the patient (where possible) and/or relatives, consider sedation (see terminal restlessness/agitation –  [link]).


[link] and [link]

Nausea and vomiting


Artificial hydration of the dying patient


Advice for patients: Patient experiences

Not wanting to be a burden:

‘I don’t want to be a burden to my family, that is something that’s definitely out of order as far as I’ m concerned. I’ ve seen other families that have endeavoured to cope with situations of that type when they couldn’t and it practically destroyed the family.’

Choosing a place to die:

‘I go back to my wife who died from cancer. One of the things she said to me was, “ I know I’ m dying but I want to die in my own home.” And my response was, “ If we can manage to bring that wish to fulfilment we will do that” . And with the help of my two daughters and the local community nurses and the doctor, we managed to achieve that. It was hard work. It was very emotional but we managed to carry out her last wish.’

‘I think if the cancer got bad I would like to go to a hospice. My husband is not terribly practical when it comes to looking after someone who is very ill and I think that I would like, if it came to it, I think I’ d like to be in a hospice where they control the pain for you, look after you.’

Worries about death and dying:

‘Again I don’t know from the doctors what is likely to happen apart from they say I will just get weaker and weaker and as more pain occurs in the bones then I will be given more painkiller.’

‘My biggest problem with thinking about death is not the actual dying because I can envisage that as going to sleep and not knowing anything about it like you go in for surgery. You have the anaesthetic and you’ re gone and you know nothing about it and you just don’t wake up. I think of death like that.’

‘What worries me is what’s going to happen before [death], particularly with cancer because you hear so much about the pain. I’ ve experienced pain, I’ ve had the pain in this breast so I have experienced pain and that side of it does worry me in wondering how I would cope with it.’

Acceptance of dying:

‘Everybody is so different. Some people can shout, some people can scream, some people are quiet, it’s very different, difficult. But acceptance is a great thing. It heals the mind. You know, you didn’t bring it on yourself. You didn’t make yourself sick. It comes on. You don’t know why. So, that’s all I can say because that’s all I can get from it. I accept it.’

‘Life is a mixture of all sorts of things. There are sad moments and there are moments when things have gone wrong and there are things when you can be upset and angry about things, but find the positives. And rejoice in those positives and rejoice in the life that you’ ve had. Celebrate the life that you’ ve had and come to terms with the fact that it will ultimately end. The only difference is that you now know and some people … well it comes to an end and they don’t know about it.’

Terminal restlessness:


  • Pain/discomfort

    – urinary retention, constipation, pain which the patient cannot tell you about, excess secretions in throat.

  • Opiate toxicity

    – causes myoclonic jerking. The dose of morphine may need to be ↓ if a patient becomes uraemic.

  • Biochemical causes

    – ↑ Ca2+, uraemia – Symptom control and clinical scenarios in palliative careif it has been decided not to treat abnormalities DO NOT check for them.

  • Psychological/spiritual distress.


  • Treat reversible causes e.g. catheterization for retention, hyoscine to dry up secretions.

  • If still restless, treat with an anxiolytic to reduce the suffering both of the patient and any relatives in attendance.

Suitable drugs:

haloperidol 1–3mg tds po; chlorpromazine 25–50mg tds po; diazepam 2–10mg tds po, midazolam (10–100mg/24h. via syringe driver or 5mg stat) or levomepromazine (50–150mg/24h. via syringe driver or 6.25mg stat).

Excessive respiratory secretion (death rattle):

Noisy, moist breathing. Rarely distresses patients but can be very distressing for relatives in attendance.


  • Reassure relatives that the patient is not suffering or choking.

  • Try repositioning and/or tipping the bed head down (if possible) to reduce the noise.

  • Treat prophylactically – it is easier to prevent secretions forming than remove accumulated secretions.

Suitable drugs:

  • Glycopyrronium – non-sedative – give 200mcgm s/cut stat and review after 1h. If effective, give 200mcgm every 4h. by s/cut injection or 0.6–1.2mg/24h. via syringe driver.

  • Hyoscine hydrobromide – sedative in high doses – give 400mcgm s/cut stat and review response after 30min. If effective, give 400–600mcgm 4–8-hourly or 0.6–2.4mg/24h. via syringe driver. If the patient is conscious and respiratory secretions are not too distressing, it may be more appropriate to use a transdermal patch, (Scopoderm® 1.5mg over 3d.) or sublingual tablets (Kwells). Dry mouth is a side effect.

Terminal breathlessness:

Distressing symptom for patients/carers.


Support carers in attendance and explain management.

  • Diamorphine or morphine: dose depends on whether the patient is being converted from oral morphine (or an alternative opioid), to diamorphine. If no previous opioid, start diamorphine 5mg/24h. s/cut. If previously on oral morphine, divide the total 24h. dose by 3 to obtain the 24h. s/cut dose of diamorphine. ↑ dose slowly as needed.

  • Midazolam 5–10mg/24h. s/cut.

  • If sticky secretions, try nebulized saline ± physiotherapy.

Drugs and dosages for use in syringe drivers:

Table 5.21,  [link]

Table 5.21 Drugs and dosages for use in syringe drivers for palliative care

Symptom control and clinical scenarios in palliative careDrugs should be mixed with water unless indicated otherwise. Seek advice from palliative care before mixing drugs in a syringe driver

Drug (ampoule size)




Side effects

prn dose

24h. infusion dose

Cyclizine (50mg/ml)

  • Nausea and vomiting

  • Mechanical bowelobstruction

  • ↑ ICP

Can precipitate with:

  • Dexamethasone

  • Diamorphine (in higherdoses)

  • Metoclopramide

  • Midazolam

  • 0.9% sodium chloride

None in patients with advanced cancer.

Do not give in combination with:

  • Metoclopramide,

  • Levomepromazine

  • Buscopan

  • Drowsiness

  • Dry mouth

  • Blurred vision

  • Hypotension

Injection can be painful – if injection site is inflamed, try to dilute further.

50mg s/cut prn


Dexa-methasone (4mg/ml)

  • Nausea and vomiting

  • Pain relief

  • ↑ ICP

  • Spinal cord compression

  • Intestinal obstruction

  • Syringe driver site reaction

Mixes with metoclopramide. Advisable to put in separate syringe but can mix with diamorphine.

Precipitates with:

  • Cyclizine

  • Midazolam

  • Haloperidol

Diabetes – needs strict supervision of blood glucose level

  • GI side effects

  • Impaired healing

  • ↑ appetite and weight gain

  • Hirsutism

Not usually needed


1mg for syringe driver site reaction

Diamorphine (5mg, 10mg, 30mg, 100mg, 500mg)

  • Pain

  • Dyspnoea

  • Cough

  • Diarrhoea

With most drugs

None – ↓ dose in renal failure


One sixth of total 24h. dose

Acts in 10–30 min.

Variable –  [link]

Diclofenac (75mg/3ml)

Pain (particularly musculoskeletal pain)

Incompatible with most drugs. Use in a separate syringe driver with 0.9% saline for dilution.

  • Active peptic ulceration

  • Angioedema

Caution in patients with asthma, rhinitis or urticaria.

Skin ulceration (especially with prolonged use)

75mg s/cut bd (Do not give as well as infusion)

Acts in 20–30min.


Glycopyrronium bromide (0.2mg/ml; 0.6mg/3ml)

  • Death rattle

  • Colic in inoperablebowel obstruction

  • Reduction ofsecretions

With most drugs

  • Tachycardia

  • Dry mouth

0.2mg s/cut every 6–8h.

Acts in 20–40min.


Haloperidol (5mg/ml)

  • Nausea and vomiting

  • Hiccup

  • Acute confusion/psychotic symptoms

With most drugs

Parkinson’s disease

Possible CNS depression with alcohol/anxiolytics.

  • Extrapyramidal symptoms

  • Dry mouth

  • Drowsiness

  • Difficulty in micturition

  • Hypotension

  • Blurred vision

1.5mg od s/cut for nausea. 1.5–3mg s/cut tds for agitation (may need 5mg stat if very agitated)

Acts in 10–15min.


Avoid doses >10mg

Hyoscine butylbromide (20mg/ml)

  • Obstruction with colic

  • Death rattle

  • Excess secretions

With most drugs except cyclizine

  • Narrow angle glaucoma

  • Myasthenia gravis

20mg s/cut every 4h.

Acts in 3–5min.


Hyoscine hydrobromide (0.4mg/ml; 0.8mg/ml)

  • Death rattle

  • Colic

  • ↓ salivation


0.4mg every 6–8h.


Levomepromazine (25mg/ml)

  • Nausea and vomiting

  • Insomnia

  • Terminal agitation

  • Intractable pain

Precipitates with dexamethasone

Do not use with cyclizine

  • Parkinson’s disease

  • Postural hypotension

  • Antihypertensive therapy

  • Epilepsy

  • Hypothyroidism

  • Myasthenia gravis

  • Sedation

  • Postural hypotension

6.25–12.5mg s/cut od or bd for nausea

Acts in 30min.

6.25–25mg for nausea/vomiting

25–150mg for terminal agitation

Metoclopramide (10mg/2ml)

Nausea and vomiting

With most drugs

Do not give in bowel obstruction if colic.

Do not give with antimuscarinic drugs (e.g. cyclizine)

  • Dizziness

  • Diarrhoea

  • Depression

  • Extrapyramidal side effects

10–20mg s/cut every 6h.



  • Terminal agitation

  • Epilepsy/myoclonus

  • Hiccup

  • Muscle spasm

With most drugs

  • Drowsiness

  • Hypotension

  • Dizziness

  • Drowsiness

2.5–10mg s/cut every 4h.

Acts in 5–10min.



Specialist use only

  • Intestinal obstruction and vomiting

  • Diarrhoea

  • Bowel fistulae

Precipitates with dexamethasone

Caution in diabetics – may cause hypoglycaemia

  • Dry mouth

  • Nausea or vomiting

  • Anorexia

  • Abdominal pain

  • Flatulence

Not usually given as prn dose


Oxycodone (10mg/1ml; 20mg/2ml)


Incompatible with cyclizine when concentration of cyclizine is >3mg/ml (i.e. 60mg in a standard 20ml syringe).

Hypersensitivity to opioids.

Severe renal impairment (creatinine clearance <10ml/min.).

Concurrent administration of MAOIs or <2wk. after discontinuation.


One sixth of total 24h. dose

Acts in 10–30min.

Variable –  [link]