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

2. 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. 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

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

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

6. 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

7. 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

8. 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

9. 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.

10. 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

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

12. 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

13. 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

14. 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

15. 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

16. 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

17. 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

18. 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

19. 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

20. 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

21. 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?