Table 3 Recommendations for treatment of symptoms in paediatric palliative care

Do

• Consult a psychologist, paediatric psychiatrist, if necessary a physician for people with intellectual disabilities or someone of a similar discipline.

• Decide in deliberation with the parents the mode of treatment for the anxiety and/or depression of the child.

• Involve a spiritual caregiver (possibly of the family’s own conviction) to help with existential philosophical questions.

• Offer relaxation and distraction techniques in case of anxiety.

Consider

• Consider selective serotonin reuptake inhibitors (SSRI’s) in case of anxiety, whether or not accompanied by depression.

• Consider methylphenidate in case of depression.

• Consider the help of experts for self-hypnosis.

Do

• In case of mild bleeding and shortage of coagulation factors give desmopressin, tranexamic acid and/or vitamin K.

• In case of severe bleeding give fresh frozen plasma and/or recombinant factor VII.

• In case of a life threatening bleeding and DNR-order explain symptoms and treat dyspnoea with morphine, diazepam or midazolam.

• In case of thrombosis give low molecular weight heparin.

Consider

• Consider blood transfusion in anaemia (Hb<5,0 mmol/L).

• Consider desmopressin for bleeding caused by mild thrombocytopenia.

• Consider for nose bleeds local adrenalin, xylometazolin, spongostan or local coagulation by an ENT-physician.

• Consider in case of bleeding platelet transfusions.

• Consider transfusions of platelets before physical activities.

• Consider heparin in case of thrombosis.

Don’t

• Do not give vitamins and/or nutritional supplements.

• Do not give erythropoietin.

Do

Coughing

• Give counselling and do breathing exercises.

• Give morphine if coughing leads to discomfort.

Consider

Coughing

• Consider codeine, dextromethorphan or noscapin.

• Consider physical therapy for productive coughing.

• Consider “huffing” (breathing technique in which expiration is performed with open glottis).

• Consider expirational compression of thorax.

• Consider different postures (coughing while standing or sitting is more effective).

• Consider inhalation of physiological saline (NaCl 0.9 %).

Rattling

• Consider suction.

• Consider lying on one’s side.

• Consider anti-cholinergic medication.

Do

• Give information and do breathing exercises

• Create a calm and quiet atmosphere

• Give morphine if dyspnoea leads to discomfort

Consider

• Consider referral to physical therapist for “Neuro electrical muscle stimulation and chest wall vibration”.

• Consider the use of a fan to cool the face.

• Consider the use of experts for self-hypnosis.

• Consider the use of lorazepam or midazolam, in combination with morphine to lessen the experienced discomfort, especially in case of anxiety.

• Consider inhalation of physiological saline (NaCl 0.9 %) or hypertonic saline (NaCl 3 %) in case of thick mucus.

• Consider the inhalation of corticosteroids, airway dilators and mucolytic drugs in case of bronchial obstruction and/or asthma.

• Consider the supply of oxygen.

Don’t

• Do not nebulize morphine.

Do

• Treat electrolyte disorders, dehydration and/or malnourishment.

• Treat comorbidity like asthma, infection, pain and/or pruritus.

• Discuss in case of depression counselling and antidepressants.

• Encourage a regular sleep-wake rhythm and avoid stimulants.

• Give advices for relaxation and distraction.

• Give psycho education for managing fatigue.

• Emphasize the importance of the balance between physical activities and rest.

• Focus on what the child can do and not on what he/she is unable to do anymore.

• Keep a diary to get insight in fatigue and activities.

• Advise fatigue reducing activities.

• Advise a regular sleeping scheme.

• Consult a physical therapist for an exercise program.

Consider

• Consider corticosteroids.

• Consider melatonin for sleeping disorders.

• Consider blood transfusion if haemoglobin drops below 5 mmol/l.

• Consider short lasting treatment with benzodiazepines for sleeping disorders.

• Consider stopping medication which might have fatigue as side effect.

• Consider the treatment of other underlying symptoms.

• Consider stimulating bedridden children to get out of bed regularly.

• Consider consulting a psychologist for psychotherapy or support.

• If all of the above does not help, consider methylphenidate.

Do

• Distract the child, especially in case of anxiety.

• Combine non-medical treatment with medical treatment.

Consider

• Consider dietary advice.

• Consider consultation of a physical therapist, psychologist and/or music therapist.

• Consider hypnosis.

• Consider a step-wise approach in medical treatment:

 Step 1:

 • 5-HT3-receptor antagonist and/or

 • D2-receptor antagonist

 • H1-, and ACh-receptor antagonists

 Step 2:

 • Corticosteroids

 • Low dose benzodiazepine

 • Replace a step 1 drug with another member of the same family of drugs (rotation).

 • Replace phenothiazine by as well an antihistamine as a dopamine receptor antagonist.

 Step 3:

 • Aprepitant

 • Cannabis

 • Low dose propofol

Do

Seizures

• Give midazolam or diazepam in case of seizures lasting over 5 min or in case of several short seizures.

• Consult a paediatric neurologist.

Diplopia

• Give an eye patch.

Non-closure of (one of) the eyes

• Give during the day methylcellulose eye drops.

• Give at night oculentem simplex eye ointment.

Swallowing disorders

• Try to prevent aspiration.

• Give optimal feeding fitting the stage of disease.

• Offer fluids with a straw.

• Make sure there are pauses between swallowing.

• Let the child sit straight.

Consider

Seizures

• Consider maintenance treatment, like clonazepam, levetiracetam, valproic acid, carbamazepine, phenobarbital, clobazam, phenytoin or midazolam.

Non-seizure movements

• Consider consulting a paediatric neurologist.

• Consider bipiridene to treat acute dystonia caused by anti-emetics.

• Consider baclofen or benzodiazepines to treat unpleasant movements.

• Consider injecting botulinum toxins for treatment of local spasticity.

Swallowing disorders

• Consider a nasogastric tube to prevent aspiration.

• Consider a nasogastric tube to guarantee intake.

• Consider thickening of the food.

Do

• Treat pain according to a set (time) scheme, use the most suitable way and adjust to the needs of the child.

Consider

• Consider melatonin for headaches and sleeping disorders.

• Consider complementary therapies.

Do

• Prevent intertrigo.

• Treat crusting with damp towels.

• Give ointments for dry skin.

• Give ointments with anti-pruritus supplements (menthol).

• Give ointments with corticosteroids for eczema.

• Give disinfectants, anti-fungal and/or antibiotic ointments for infected skin.

• In case of opioid-associated pruritus give opioid antagonists or rotate opioids.

Consider

• Consider cooling the skin.

• Consider hypnosis.

• Consider antihistamines.

• Consider serotonin antagonists.

• Consider H2-receptor antagonists.

• Consider additional chemotherapy and/or steroids for lymphoma-associated pruritus.

• In case of cholestasis-associated pruritus consider stenting, H2-receptor antagonists, mirtazapine, serotonin antagonists, rifampicin, phenobarbital, cholestyramine, ursodeoxylcholic acid or prednisone (if there are no other solutions).