Cancer in Children: Clinical Management, 5th Edition

Chapter 10. Palliative care

Helen Irving


There has been a dramatic improvement in outcome for children with cancer as a consequence of the multidisciplinary approach to care, enrolment of patients in cooperative clinical trials, and advances in the biologic understanding of cancer and mechanisms of drug activity. However, 30 per cent of children still die as a consequence of refractory or relapsed disease and cancer remains the most common medical cause of death in developed countries for children aged between 1 and 19 years. As more children are protected from infectious diseases, cancer also has an increasingly significant role in the developing world. While the focus in cancer care is rightly directed at cure, there is a need to optimize palliative care to enhance quality of life for the child, the family, and the broader community.

Transition to palliative care

Palliative care is defined by the World Health Organization (WHO) as:1

…the active, total care of patients whose disease, in the light of present medical knowledge, is not responsive to curative treatment. Control of pain, other symptoms and of psychological, social and spiritual problems is paramount… and encompasses ongoing grief and bereavement support… the goal… is achievement of the best quality of life for patients and their families.

This traditional definition implies a precise time point when treatment with curative intent stops and palliative care begins. For many cancers of childhood, there is no definitive point at which the direction of treatment changes. Therefore the transition is more ‘fluid’ in nature and is directed by the child's illness, the family's wishes, and the physician's understanding of the family and underlying disease. A decision to direct treatment towards palliation is a difficult and gradual process based upon open communication, trust, emotional safety, empowerment of the child and family, and a respect by the physician for the uniqueness of each family.2

However, delay in initiation of palliative care can result in crisis-oriented management, loss of opportunity to promote the principles of care, an absence of a framework for proactive interventions or decision-making which may be of benefit to the child and family, and difficulty in providing family support.3,4,5 Reasons for delay in the initiation of palliative care come from health professionals and families. A recent survey investigating attitudes and practices among paediatric oncologists regarding end-of-life care found that almost half reported a feeling of failure at the prospect of a patient dying within 6 months.6

To optimize care, a more transitional model for the initiation of palliative care will give families more access to supportive care throughout a disease trajectory7,8 (Fig. 10.1) The American Academy of Paediatrics and the WHO advocate this model such that a child might participate in a phase I trial, for example, while receiving symptom management and support while living with uncertainty and the possibility or probability of death.9 Arecent study in the USA reported that 24 per cent of children who had relapsed or progressive disease entered phase I trials and 38 per cent entered phase II studies. Half received treatment during the last month of life.10 While it may be reasonable to consider anticancer therapy in the last weeks of life, a clear decision must be made as to the reasoning behind the choice, where hope of cure will be replaced by hope for optimal quality of life and a peaceful and dignified death.9

Fig. 10.1 Transitional model of palliative care.

Wherever possible, decision-making should involve the child or adolescent. The ability to make informed choices will depend upon their own life experiences, cognitive ability, and personality, and the family's cultural and religious beliefs. Children experience and understand disease and death differently according to their age, stage of development, and experience with death and illness. Consequently, communication with the child will depend on these factors and should be adaptive.11 Child preferences and insights may also guide choices and decisionmaking by families and health professionals. The approach to care must be coordinated by a key worker, should be family centered and flexible, with access to professionals who can provide emotional, physical, spiritual, and psychosocial support to the child and family in a place of their choice.2,5,9

Common symptoms and management

Symptom management of a dying child greatly influences the ability of the family and community to cope with a child's death. The approach must be individualized and is outlined in Table 10.1.2

Pain management

Cancer pain is a complex mix of physical sensation, agitation, and irritability, and is compounded by anxiety and by psychosocial and cultural factors, as well as by the responses of the child and family to the underlying stage of disease. It is the most frequently experienced symptom in children with cancer, occurring as a result of the cancer itself, treatments, procedures, or incidental causes.12,13 Aims of management are to relieve pain at rest and during activity, and to ensure comfort during sleep with minimal side effects.

Classification of pain

Pain can be classified by its origins and pathway of transmission to the brain into two broad categories, nociceptive (somatic and visceral) and neuropathic.14 Invasion of bone and bone marrow is typical of somatic nociceptive pain and is the most common cause of pain in the child with cancer. This pain is typically described as constant and irritating with no paraesthesia. Neuropathic pain is typically associated with burning throbbing sensations and altered sensory perception.14 Severe pain that is reported after minimal stimuli is sometimes misinterpreted as symptom magnification, but is typical of pain with a neuropathic basis.15

Table 10.1. Approach to symptom management

·  History and assessment

·  Identification of the cause

·  Ongoing communication with the child and family

·  Explanation of symptoms and treatment

·  Establishment of goals of therapy (e.g. pain relief)

·  Implementation of therapy

·  Regular review and modification of treatment as required

Pain assessment

Assessment is dependent upon the child's age, developmental stage, and previous experiences. Obtaining qualitative and quantitative descriptions of pain from very young or non-verbal children can be very difficult. The use of a number of different parameters is necessary for determining location, nature, and severity of pain. Simple observation of the child is very useful. Any change in behaviour may indicate discomfort. Assessment can be enhanced by using of visual analogue tools, including the smiling faces or thermometer scales, and colouring a body outline in different shades16 (Fig. 10.2).


Pain relief is possible for most patients, with >80 per cent of children requiring opioids during the palliative phase of their illness.5 Medication is generally administered according to the following guidelines.

·  By mouth: oral administration is convenient, non-invasive, and cost effective.

·  By clock: regular scheduling ensures a steady state, reducing the peaks and troughs of ondemand dosing.

·  By ladder: this enables a stepwise approach to treatment13 (Fig. 10.3).

·  By the individual child: the individualized approach recognizes inter-child variability.13

Analgesic agents

Analgesics can be classified into two groups.

Primary analgesics:

·  non-opioid and non-steroidal anti-inflammatory drugs

·  weak opioids

·  strong opioids.

Secondary analgesics/adjuvant drugs:

·  antidepressants

·  anticonvulsants

·  corticosteroids.

·  Doses and indications are given in Table 10.2.

Fig. 10.2 Visual analogue scales and body outline.

Primary analgesics The non-steroidal anti-inflammatory drugs (NSAIDs), such as naproxen, ibuprofen, and diclofenac, have an antiprostaglandin activity, suppress inflammation, and reduce pain. Side effects include nausea, gastric irritation, ulceration, and impaired platelet function. They should be used cautiously in children with thrombocytopenia. The Cox-II inhibitors may offer an alternative for children with bleeding diatheses, but further evaluation is required. Acetaminophen (paracetamol) has a mild anti-inflammatory effect and is well tolerated.

Fig. 10.3 WHO analgesic ladder.

Table 10.2. Common analgesic agents (primary and secondary)



Frequency and indication


15 mg/kg (oral or rectal)

Every 4–6 h: mild pain, fever


0.2–0.5 mg/kg (oral)

At night: neuropathic pain

1–5 mg/kg/day (oral)

At night: antidepressant


2 mg/kg (oral)

Every 12 h: neuropathic pain

Codeine phosphate

0.5–1 mg/kg (oral)

Every 4 h: mild–moderate pain


1 mg/kg (oral)

Every 8–12 h: mild pain (NSAID)


100–400 mg/kg (s.c./i.v.)

Bolus: severe pain

2–4 mg/kg/h (s.c./i.v.)

Infusion, ↑ dose as required

25, 50, 75, 100 mg/h

Transdermal patch


2.5–10 mg/kg/dose (oral)

Every 6–8 h: mild pain (NSAID)


0.1 mg/kg (oral)

Every 4–6 h: severe pain, morphine intolerance

Morphine sulphate

0.3–0.5 mg/kg (oral)

Every 4 h regularly
Starting dose, increasing as required ↑dose as required

0.1–0.2 mg/kg (s.c./i.v.)

Bolus every 4 h, infusion, ↑dose as required

Sustained release morphine (MS Contin)

0.9 mg/kg (oral)

Every 12 h,↑dose as required


5–10 mg/kg (oral)

Every 12–24 h; mild pain (NSAID)

Sodium valproate

5–15 mg/kg (oral)

Every 8–12 h; neuropathic pain

Every effort has been made to ensure that the doses are accurate, but the reader is advised to check these carefully. Readers should also refer to palliative care texts and experienced paediatric pharmacists for further drugs, indications and side effects.2,13,14

If pain is not controlled with acetaminophen, a weak opioid such as codeine phosphate can be commenced. However, codeine causes significant constipation and has a ceiling analgesic effect.

Morphine binds selectively to the µ opioid receptor and is available in oral, parenteral, spinal, and rectal preparations. It is readily absorbed orally which is the preferred route of administration. Morphine mixture, in appropriate dosing, provides 4–6 h of analgesia and should be prescribed every 4 h. There is no role for on-demand dosing in palliative care, as breakthrough pain is distressing and difficult to control. The dose should be adjusted to that which relieves pain. Incremental increases of 30–50 per cent per dose may be required within 24 h. Once the appropriate 24-h dose of morphine is determined, transfer to controlled release preparations may be possible. Controlled release preparations have a slower onset of action and a longer duration of action. They are available in tablet, granule, or capsule form and can be administered twice daily or daily, depending on the formulation. Immediate release morphine should be available to the child for relief of ‘breakthrough pain’ (Table 10.3). If repeated doses of breakthrough morphine are required, the dose of controlled release morphine should be increased. A continuous subcutaneous/intravenous infusion of morphine is a simple and effective mode of drug delivery if the oral route becomes problematic.

Table 10.3. Example of daily morphine dosing and conversion to sustained release morphine for a 15 kg child receiving an initial dose of 0.3 mg/kg

Four-hourly dose

Total 24 h dose

MS Contin dose

Breakthrough dose

5 mg

30 mg

15 mg every 12 h

5 mg

Hydromorphone and oxycodone are analogues of morphine with similar pharmacokinetic and pharmacodynamic properties. Hydromorphone is six times as potent as morphine, and the potency of oxycodone is about three-quarters of that of morphine. These agents can be used if there is sensitivity to morphine.

Methadone is a synthetic long-acting opioid with strong affinity for both µ and δ receptors. It also has antagonist activity at the N-methyl-D-aspartate (NMDA) receptor sites and consequently may have a role in neuropathic pain. It is not generally considered as first-line therapy, but may play a role in children with significant side effects or allergy to morphine. Because of its long half-life, accumulation can occur, leading to sedation. Consequently, the child should be closely monitored for the first few days after initiating methadone or when there is a significant dose increase.14,15

Fentanyl is a synthetic opioid that can be given parenterally or via a transdermal patch. Transdermal fentanyl has fewer side effects than morphine; in particular, there is less constipation, nausea, and drowsiness. There is a delay of 12–18 h after patch application before therapeutic levels are reached, and consequently transdermal fentanyl has a limited role in children with rapidly escalating pain. The patches are easily applied, release the drug at a steady rate, and are changed every 72 h. Transdermal fentanyl is most effective in children with relatively stable cancer pain and who require a minimum of 60 mg equivalent of oral morphine daily.17

Opioid side effects and precautions for their use All opioids have side effects and constipation is the main problem. Laxatives should always be prescribed whenever opioids are used, unless transdermal fentanyl is used when lower doses or no laxatives at all may be required.17 Unlike many of the other side effects, tolerance to constipation does not occur. After the administration of breakthrough doses of morphine, drowsiness and nausea can occur, but once a stable dose is achieved these effects become less problematic.

Opioids will cause respiratory depression if given in an inappropriate dose, which is generally above that required for analgesia, or if there is concomitant renal insufficiency or liver failure. The dose of opioid required for analgesia can be close to that which depresses respiration (the double effect), raising concerns about hastening death. However, optimal analgesia and quality of life are of paramount importance and should override these concerns. It is also important to recognize that not all pain can be relieved with morphine alone. For example, neuropathic and muscle pain are often opioid resistant and adjuvant agents or therapies are frequently required to manage pain.

Secondary analgesics Tricyclic antidepressants (TCAs) in low dose are useful for neuropathic pain, particularly painful paraesthesia, peripheral neuropathy, or deafferentation pain. TCAs exert their effect by inhibiting norepinephrine and serotonin uptake, thereby increasing inhibitory neurotransmitter tone at the level of the spinal cord. As well as having a direct analgesic effect, they potentiate opioid analgesia via adrenergic or serotinergic mechanisms. A low dose of amitriptyline at night usually has an effect within 48–72 h.13,14 The newer selective serotonin-reuptake inhibitors (SSRIs) are ineffective analgesics and should not be substituted for TCAs; however, they may be useful in improving affect and can be used in combination with low-dose TCAs.15

Anticonvulsants, such as carbamazepine or sodium valproate, are useful for pain related to nerve infiltration/compression which is often periodic or spasmodic. They have a stabilizing effect on excitable cell membranes and prevent the spread of neuronal excitation.14 Because of the potential interaction with other agents and the risk of blood dyscrasia with carbamazepine, gabapentin may be useful for neuropathic pain.15

Mexilitene, clonidine, nifedipine, and ketamine may also be useful for patients with refractory neuropathic pain. However, they are rarely required in children and are generally used by specialist palliative care physicians.15

Low-dose corticosteroids act as anti-inflammatory drugs and can reduce bone pain. However, dosing should be restricted because of potential significant side effects.

Other secondary analgesic drugs include antispasmodics, anxiolytics, and bisphosphonates. Bisphosphonates inhibit bone reabsorption and may be useful for treatment of pain secondary to hypercalcaemia and bony metastases. For example, pamidronate binds irreversibly to bone, resists enzymatic degradation, and inhibits osteoclasts, reducing local synthesis of prostaglandins. Calcitonin is a naturally occurring osteoclast inhibitor and has been used in the adult palliative care setting.15 However, these drugs are expensive, and bone pain can generally be managed with a combination of opioid and anti-inflammatory drugs or with focal radiotherapy.

Adjuvant therapy Both chemotherapy and radiotherapy can be used for palliation, and radiotherapy in particular can have a potent analgesic effect. One or two fractions are often all that is required, and the effect can be quite rapid. Consequently, the opioid requirement is likely to lessen. Bone-seeking radiopharmaceuticals such as strontium-89 and samarium-153 also effectively reduce bone pain. Eventually, treatment with radiotherapy and chemotherapy is not a viable option, as the disease becomes resistant and the journey from home to treatment center becomes too exhausting for child and family.

Nerve blocks are occasionally indicated in children with well-defined somatic or visceral pain. Spinal opioid therapy and epidural anaesthetics are effective for pelvic pain and often allow a reduction in sedative doses of oral or subcutaneous opioids. Blocks can be temporary, prophylactic, or permanent, and should be placed by experienced anaesthetists.

Complementary therapy Physical therapies such as warmth, cold, touch, and electrical therapy are useful, with touch and massage producing relaxation and stimulation of afferent pathways. Transcutaneous electrical nerve stimulation (TENS) acts by inducing electrical activity in larger afferent fibers, thereby reducing nociceptive pain signals in the dorsal horn of the spinal cord which induce paraesthesia over the painful area. It is useful in treating musculoskeletal and neuralgic pain.

Fear and anxiety will aggravate pain, and good communication with the child and family will assist in management. Simple measures of distraction, play, and music are helpful. Older children and adolescents are also able to learn relaxation techniques and respond well to cognitive therapy which allows them to regain control and pain relief.

Gastrointestinal symptoms

Oral problems

Children who are debilitated, or have poor oral intake or poor oral hygiene, are susceptible to mouth problems. Regular mouth care, tooth cleaning, and mouthwashes are beneficial. Chewing or sucking unsweetened pineapple pieces can also help, as pineapple contains the proteolytic enzyme ananase. Xerostomia or dry mouth is common, and simple measures such as sucking ice, frozen juices, or frozen drinks will moisten the mouth and relieve thirst. Improving mouth care and treating or preventing infection can also reduce mucosal bleeding.

Nausea and vomiting

The most common cause of nausea and vomiting during palliative care is related to opioid use. Other causes include drugs, upper gastrointestinal inflammation, raised intracranial pressure, metabolic disturbances, constipation, and infection. Vomiting is coordinated by the vomiting center in the reticular formation of the medulla and is stimulated by the chemoreceptor trigger zone (CTZ) and by autonomic afferents from the viscera and higher centers. Anti-emetic drugs have different effects upon these sites and the choice of agent is dependent upon the possible aetiology. For example, drug-induced and metabolic anomalies act upon the CTZ, and serotonin antagonists such as ondansetron, haloperidol, prochlorperazine, and metoclopramide will be of benefit. Antacids and H2 antagonists such as ranitidine will provide relief from gastritis. Disturbances of gastric emptying can be helped with agents that increase emptying such as metoclopramide and domperidone. If raised intracranial pressure is likely, steroids may temporarily alleviate symptoms. Stimulants such as metoclopramide should be avoided in children with possible gut obstruction, as pain and obstruction can be further aggravated. Care should also be taken with phenothiazines in children because of the potential for dystonic reactions.


Normal bowel function requires coordination of motility, mucosal transport, and defecation reflexes. When segmental non-propulsive motility predominates, constipation develops. Constipation causes abdominal pain, anorexia, nausea, and vomiting, and when severe it can cause overflow diarrhoea. The aetiology can be divided into the following groups: primary, which is related to intra-abdominal or neurologic pathology; secondary, which is more common and is associated with drugs, particularly opioids; other exacerbating factors, such as electrolyte disturbances, immobility, and poor intake of fluid and fiber.

Assessment is based upon the previous and current pattern of bowel habit, the underlying condition, food and fluid intake, medication, and previous laxative use. Treatment includes general measures such as prevention, encouragement of fluid and fiber intake, enhancing mobility, and laxative treatment. Which laxative to select is based upon cause, patient preference, drug availability, and degree of constipation. Laxatives are classified as lubricants/stool softeners, stimulants/contact, osmotic laxatives, and local rectal applications. As opioids reduce the propulsive movement of the bowel, treatment should aim to stimulate and soften the stool. Naloxone at 10–20 per cent of the morphine dose may have a role in severe opioid-induced constipation.14 If constipation is well established, suppositories or a small enema will be required to clear the lower bowel before a normal bowel pattern can be established. Large-volume enemas can lead to fluid and electrolyte disturbances, particularly in the debilitated child, and should be avoided.


The cause of diarrhoea is usually evident from the history and the underlying condition. Simple measures such as ceasing laxatives, high-fiber foods, and enteric supplements will aid management. Medication is frequently required and loperamide 0.05–0.1 mg/kg (maximum 2 mg) is generally well tolerated and effective. If severe watery/osmotic diarrhoea is suspected, such as can occur with severe gut graft-versus-host disease and in children with HIV infection, subcutaneous octreotide can be helpful. Morphine either orally or subcutaneously will also alleviate diarrhoea.

Anorexia and feeding issues

Anorexia is common in the later stage of the child's illness. Families find this very distressing, and support and explanation is required to assist the family to understand that anorexia is a component of progressive disease. Pain, nausea, oesophagitis and gastritis, constipation, drugs, anxiety, and depression can also contribute. Treatment of reversible conditions and presentation of small simple meals may improve intake. Whether enteral feeding is initiated must be considered on an individual child and family basis, and generally only if the quality of life of the child will be improved by its introduction.

Respiratory symptoms


Breathlessness is caused by pulmonary and extrapulmonary conditions. It may be reversible with relatively simple measures, such as oral antibiotics if infection is present and optimizing analgesia when dyspnoea is related to pain. Where anaemia is contributing to dyspnoea, transfusion should be considered. If pleural effusions are symptomatic, drainage can be considered if the general condition allows. However, re-accumulation will occur, and further drainage or interventions should be individually determined. Palliative radiotherapy may reduce mediastinal disease and pulmonary metastases.

Supportive measures Positioning the child in a comfortable and upright position in bed or a chair, increasing air movement with a fan, and improving ventilation in the room by opening windows will aid in the management of dyspnoea. Breathing exercises and relaxation techniques may be beneficial to the older child. Anxiety contributes to the degree of dyspnoea, and so the child and family should be managed in a calm and reassuring manner. Low-dose diazepam (0.04–0.2 mg/kg every 8 h) is often helpful in reducing anxiety. In the terminal phase of illness, midazolam combined with morphine in a subcutaneous infusion is often required to reduce anxiety, agitation, and distress from air hunger.

Bronchodilators If bronchospasm is present or if there is a history of asthma, bronchodilators and corticosteroids may be beneficial. Steroids may also relieve bronchial compression and lymphangitis carcinomatosis.

Opioids Opioids decrease patient awareness of dyspnoea by moderating the reflexive drive to breathe and may also improve the efficiency of breathing and exercise endurance. The role of nebulized morphine is debatable, but it has been shown to be effective for some patients, particularly those receiving morphine for pain relief.14 Low-dose morphine (2–5 mg) in normal saline is nebulized with air or oxygen and administered every 4 h if a trial has been beneficial to the child. Bronchospasm may occur after the first dose, but responds to bronchodilator therapy.18 Nebulized fentanyl may cause fewer problems than morphine as it evokes less histamine release, although further studies are required.15

Oxygen therapy Oxygen may be helpful in those with metastatic pulmonary or mediastinal disease. Headache, nausea, daytime drowsiness, and confusion may indicate hypoxia, and having oxygen available is reassuring for child and family. The use of oxygen prior to activity may be all that is required. Oxygen should be discontinued if no definite benefit is noted.


Cough is caused by irritation to receptors in the upper or lower respiratory tract, pleura, pericardium, or diaphragm. Simple measures such as antihistamines or anticholinergic drugs, antibiotics for respiratory infection, and linctus will sooth the throat and reduce irritant dry cough. Suppression of cough with opioids is indicated for distressing dry cough. If a child is already receiving morphine for pain relief, increasing the total dose may be effective. Bronchodilators may ease bronchospasm. Nebulized saline with local anaesthetic agents (lidocaine 2% or bupivicaine 0.25% 5 ml via nebulizer every 4–6 h) can be tried for intractable cough (note that the gag reflex will be anaesthetized and it is recommended that the patient does not eat or drink for 1–2 h after administration).19

Excess secretions

Excessive secretions or difficulty in clearing pharyngeal secretions will cause ‘rattly’ or noisy breathing terminally or in children with brainstem lesions. Positioning will assist with postural drainage of secretions. Anticholinergic drugs, such as hyoscine hydrobromide (0.2–0.4 mg s.c. every 4 h) can be used to reduce the production of secretions. Atropine can also be used but will lead to bradycardia with repeated dosing.

Cheyne–Stokes respiration

In the terminal phase, periodic respiration is common with slowing of breaths and episodes of apnoea. This is distressing for the family, and explanation and reassurance should be given that the child will not be distressed and that this is a normal part of the dying process.

Bleeding and anaemia


Anaemia is frequently seen and decisions regarding blood transfusion should be made on an individual basis depending on the stage, life expectancy, and symptomatology of the child. If anaemia is interfering with the child's activity, transfusion is appropriate. As the disease progresses and the child's activity reduces, anaemia will become less symptomatic and transfusion may not confer any benefit on the child.


Active bleeding is distressing for both the child and the family. Prevention of bleeding with platelet transfusion should be considered for children with thrombocytopenia. As for blood transfusion, the decision to transfuse platelets should be determined on an individual patient basis, discussed with the family, and reviewed periodically. Bruising and petechiae are common but not life threatening, and do not necessarily require treatment. Tranexamic acid (Cyklokapron1) 20 mg/kg every 8 h orally may be given to help stabilize clots that form over a bleeding area, particularly from mucosal surfaces such as gums, mouth, and gut. Thrombin packs and gelfoam may also be helpful. Bleeding from ulcerated areas on the skin or perianally can also be treated with topical 1:1000 epinephrine.19 Sucralfate dispersed in water-soluble gel can be used topically. If major bleeding occurs when death is imminent, treatment should be directed at calming the family and simple supportive measures. As blood pressure and cardiac output drops, bleeding reduces. Analgesia and sedation should be administered to relieve any distress.

Neurologic symptoms


Fear of the unknown, of potential symptoms, and of suffering will cause anxiety in the child and family. Communicating with the child and family will help allay some fears, but occasionally anxiolytics or antidepressants may be of benefit to the child. Relaxation techniques, distraction, music, meditation, and cognitive therapy may be of benefit for older children.


Seizures can occur as a result of metabolic disturbances, intracranial lesions, raised intracranial pressure, and pre-existing epilepsy. Children with epilepsy or previous seizures should continue their usual anticonvulsants. However, control of seizures may be lost if the child is unable to tolerate oral medication and alternative routes or drugs may be required. Diazepam given either intravenously or rectally is an effective anticonvulsant and there is usually a prompt response. Clonazepam may be useful for diazepam-resistant fits. As neither have a prolonged anticonvulsant effect, regular oral or subcutaneous anticonvulsants should be commenced. Midazolam is easily administered subcutaneously in either continuous or bolus dosing (Table 10.4).

Muscle spasm and myoclonus

Muscle spasm can occur as a result of immobility, pain, neuropathic spasm, or cramp. Appropriate analgesia will reduce protective muscle spasm and low-dose diazepam can be considered if muscle spasm itself is causing pain. Encouraging mobility or changing position regularly will reduce spasm and contracture development. Myoclonus is a toxic effect of opioids, but is seen less frequently in children than in adults. Midazolam as a bolus or infusion is usually effective.

Terminal care

Terminal care generally refers to care in the last days or hours of life and is associated with progressive deterioration and changes in physical signs and symptoms. For most children and their families, this care will be home based.2,4,5,9 Care must be coordinated and flexible with access to 24-h advice from experienced health care professionals. The aims of terminal care are to:

Table 10.4. Management of seizures

Emergency treatment
Diazepam 0.2–0.4 mg/kg i.v. or rectally
Clonazepam 0.5 mg (<10 years) or 1 mg (>10 years) i.v., s.c., or rectally
Midazolam 0.5 mg/kg i.v. or s.c.
Maintenance treatment
Phenytoin 2 mg/kg every 6–12 h
Phenobarbital mg/kg every 12 h
Carbamazepine 2 mg/kg every 8 h
Continuous treatment when oral route is not possible
Diazepam 5 mg (1–5 years) or 10 mg (>5 years) rectally as required
Midazolam 100 mg/kg/h (10–30 mg/24 h) s.c. infusion

·  ensure that the child is free from pain and other distressing symptoms

·  maintain the dignity of the child

·  neither shorten nor prolong the child's life

·  prepare and support the family for the child's death.

Generally the child will spend an increasing amount of time sleeping, but restlessness and agitation are common. This may be due to pain, hypoxia, anxiety, nausea, metabolic disturbances, or simple discomfort such as being too hot or too cold. Reassessment and modification of treatment is crucial to alleviate such distress. As death approaches, the child is less likely to tolerate oral medications. Alternative routes such as rectal, transdermal, and subcutaneous will be required. A continuous subcutaneous infusion via a syringe driver is simple to commence and is generally well tolerated, and several drugs can be used in combination. The Graseby syringe driver is a portable battery-operated variable speed driver. It allows subcutaneous infusions of small volumes over periods ranging from 30 min to 50 h.14 Bolus medications can also be administered. Drugs are generally prepared in normal saline or water for injection. The combination of an analgesic (e.g. morphine) and an anxiolytic (e.g. midazolam) is most common.2 Morphine dose is calculated based on the current requirement of the child. For example, if the child requires 120 mg oral morphine daily, 40 mg of parenteral morphine will be required for the 24-h period, increased according to the child's needs. Anti-emetics, anticonvulsants, and anticholinergic agents such as hyoscine hydrobromide (30–60 mg/kg/day) or glycopyrrolate (4–8 mg/kg dose) can be added as necessary. The requirements for each child will vary and the prescription should be made on an individual basis and reviewed regularly.

Specific drug notes

Midazolam (0.2–1 mg/kg/day) is an anxiolytic, sedative, and anticonvulsant agent which is suitable for an agitated or distressed child. Additional boluses can also be given. Haloperidol 50–100 mg/kg/day can also be used for agitation and restlessness. It also has an anti-emetic effect and is less sedating than midazolam. Metoclopramide can cause skin reactions, but is generally well tolerated and is an effective anti-emetic. Diazepam, chlorpromazine, and prochlorperazine should not be administered subcutaneously as they cause pain and skin reactions at the injection/infusion sites.2,14

Total care

Palliative care does not merely involve symptom management. It should include spiritual care, psychosocial support, and ongoing bereavement support. Local resources and cultural background will guide the nature and extent of psychosocial support. It must encompass total care of the child in a culturally sensitive manner and extend to the parents, siblings, grandparents, and friends.

The death of a child is also traumatic for the health professional. In a paediatric oncology palliative care environment, this trauma may be intensified because of the long-term relationship with the child and family, the previous primary focus upon cure, and the prospect of repeated losses associated with deaths of patients who relapse or fail to remit. It is critical that health professionals recognize this stress and employ strategies at both the individual and workplace levels to ensure a healthy professional lifetime. Despite the personal and professional challenges, to be able to assist in the provision of physical, emotional, and spiritual comfort to a dying child and his or her family is one of the most rewarding aspects of medical care.


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5. Goldman A (1998). Care of the Dying Child. Oxford: Oxford University Press.

6. Hilden JM, Emmanuel EJ, Fairclough DL, et al. (2001). Attitudes and practices among paediatric oncologists regarding end-of-life care: results of the 1998 American Society of Clinical Oncology survey. J Clin Oncol 19, 205–12.

7. Kane JR, Barber RG, Jordan M, Tichenor KT, Camp K (2000). Supportive/palliative care of children suffering from life-threatening and terminal illness. Am J Hosp Palliat Care 17, 165–72.

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