Oncology Outreach/Specialist Palliative Care Team Alder Hey Children’s NHS Foundation Trust MICHELLE WILLIAMS

Symptom management in the last few hours and days Symptom management is just one aspect of caring for the child and family Emotional, social and spiritual needs of child and family Child often unable to describe their symptoms Must be a team approach

3 rules Don’t panic. Listen to the parents. Be methodical and professional. Formulate a plan and explain to patient or parents. Allows parents to feel they have choices in the care of their dying child. Document and disseminate information to all the team involved in the care of the child. Check everyone is clear about their role. Third rule is remember professional boundaries. Retain a sensitive professional distance to avoid burn out

Common symptoms in the last few hours and days Anorexia Excessive respiratory secretions Bleeding Constipation Convulsions/ seizures Dry mouth Dyspnoea

Common symptoms in the last few hours and days Hiccup Intractable cough Nausea and vomiting Pain Spinal cord compression Restlessness/ agitation and confusion

Anorexia Parents worry if their child is not eating or drinking, even a few hours before they die. Consider the cause of anorexia and treatment Consider involving a dietician The child may have a gastrostomy or naso-gastric tube in place. If not, then discuss with professionals and family Reassure parents that child will need less food and will not be feeling as hungry Encourage small meals Encourage good mouth care Consider pulse of steroids

Excessive respiratory secretions Use of hyoscine hydrobromide, patches or via infusion Glycopyrronium. Used in adults a lot and use in children increasing At end of life noisy breathing may become distressing to parents Give lots of reassurance that this is the normal process and it is not distressing the child Can also use Diamorphine or Midazolam for noisy breathing

Bleeding Can be a dramatic and catastrophic end of life event Give reassurance to parents Have dark towels available Tranexamic acid, oral or IV can be useful Midazolam and Diamorphine Tranexamic acid/ adrenaline to bleeding wounds Platelet transfusions Blood transfusions – only done in hospital. Weigh up the advantages vs disadvantages

Constipation Common after administration of opioids and can cause much distress if not managed Prescribe laxatives when on regular opioids to avoid this Prescribe a faecal softener and a peristaltic stimulant e.g co-danthramer Movicol is useful in some children but difficult if not taking much orally.

Convulsions /seizures Consider the cause of the seizures Patients with cerebral tumours are susceptible to convulsions Children with complex life-limiting illnesses may have had seizures all of their lives Do not stop anti-convulsants. Commence anti-convulsants if not already prescribed Buccal midazolam/ PR Diazepam/ Paraldehyde and /or Lorazepam Resistant seizures may become a problem. First line treatment is continuous infusion of Midazolam. If they continue then need to administer Phenobarbitol, first as a loading dose then a continuous infusion

Dry mouth Good mouth care Ice cubes or pineapple chunks Artificial saliva Treat any oral candidiasis with Nystatin/ Fluconazole Use Vaseline if able to

Dyspnoea/Breathlessness Lots of different causes Initial management is to try to calm the child down Prop the child up in the bed/chair Oxygen may be helpful Gentle physiotherapy Nebulised saline or salbutamol Prescribe oral Morphine/ Diamorphine infusion Consider use of Lorazepam

Hiccup Most common cause is gastric distension/ gastric reflux Consider prescribing an antacid Consider prescribing Metoclopramide Peppermint water Consider Baclofen or Chlorpromazine If hiccups persist this could mean there is a brain stem / intra-cranial lesion present

Intractable cough Consider reversible causes and treat Humidified air or oxygen can help at times Prop up the child in bed or chair Worth trying nebulised Salbutamol/ saline Cough suppressant starting with simple linctus Consider antibiotics Physiotherapy with or without suction Oral Morphine

Nausea and vomiting Treat/remove underlying cause if possible Avoid strong smells Prescribe an appropriate anti-emetic according to cause Common drugs used include; Metoclopramide Domperidone Haloperidol Levomepromazine Dexamethasone Cyclizine Ondansetron

Pain Assessment including detailed history to ascertain nature and cause of pain Pain assessment tools Assessment is difficult in children particularly young infants and non-verbal children Pain is associated with fear and anxiety Record all information Discuss with family who know their child well Look for signs including for e.g crying, becoming withdrawn, increased flexion or extension, frowning/ grimacing, increased numbers of seizures

Choosing an analgesic Start with a non-opioid e.g Paracetamol, Ibuprofen (caution if risk of gastrointestinal bleeding or coagulation defects) Proceed to opioid analgesics if non-opioid has not been fully effective e.g oral Morphine, Fentanyl patch, Oxycodone If lose oral /enteral route or escalation in symptoms, IV or SC routes for medications via syringe driver Ensure breakthrough doses of medication are prescribed

Other types of pain and treatments Bony pain; consider radiotherapy to several sites if required, NSAIDs if possible Neuropathic pain; Gabapentin in increasing doses, Amitryptyline or Carbamazepine Ketamine, Entonox and Nerve blocks/ Epidurals should be considered for neuropathic pain Reassurance to child and family Explain all to child and family, particularly if any procedures to take place. Use anaesthetic creams if appropriate

Spinal cord compression Medical emergency in palliative care Prompt treatment is essential Treatment is unlikely to reverse any disability Early signs are back pain, leg weakness and vague sensory disturbance in legs Late signs are profound weakness, sphincter disturbance. May require catheterisation Treatment is to scan asap, prescribe high dose steroids and commence radiotherapy asap Spinal surgery may be an option but not usual

Restlessness/ Agitation Consider the cause of agitation and treat any reversible causes Medication could include Lorazepam, Midazolam and Haloperidol via various routes Most common for sudden onset of severe agitation is Midazolam via buccal route or intranasally Restlessness and agitation are common during the terminal phase Commence IV/ SC medication via syringe driver/ pump Appropriate medication is Midazolam and Levomepromazine Medications to be titrated as required

Summary THANK YOU ANY QUESTIONS? There are may symptoms in palliative care I have only covered some of these Ensure you have a comprehensive symptom management plan Think of the 3 rules at the beginning THANK YOU ANY QUESTIONS?