Palliative Care in Children

Pain

• WHO analgesic ladder adapted for children
• Age-appropriate assessment (FLACC, Wong-Baker)
• Paracetamol and ibuprofen first-line for mild pain
• Morphine is the strong opioid of choice
• Always prescribe a laxative alongside opioids
• Non-pharmacological: positioning, distraction, warmth

Nausea & vomiting

• Identify the cause before choosing antiemetic
• Ondansetron for chemotherapy-related nausea
• Cyclizine for general nausea or raised ICP
• Domperidone for gastric stasis
• Mouth care if vomiting frequently

Breathlessness

• Low-dose morphine reduces the sensation
• Cool air from a fan across the face
• Positioning upright or side preference
• Oxygen not always helpful
• Midazolam for anxiety-driven breathlessness
• Noisy breathing does not always mean distress

Seizures & agitation

• Buccal midazolam is first-line rescue
• Anticipatory prescribing is essential
• Families need a clear seizure plan at home
• Rule out reversible causes of agitation first
• Familiar voices, music, touch can help

Secretions

• "Death rattle" distresses families more than the child
• Gentle repositioning and raising head of bed
• Glycopyrronium or hyoscine reduce new secretions
• Suctioning usually avoided — causes more distress
• Explain to families the child is not choking

Agitation

• Can be pain, fear, full bladder, or the dying process
• Midazolam commonly used for terminal agitation
• Keep the environment calm and quiet
• Familiar voices and touch help

Recognising dying

• Increasing drowsiness and withdrawal
• Reduced oral intake
• Mottled skin, peripheral cyanosis
• Changes in breathing pattern
• Reduced urine output

Anticipatory prescribing

• Medications for pain, nausea, breathlessness, agitation, secretions
• Prescribed before crisis happens
• Available in the home or bedside
• Clear instructions for families and out-of-hours teams

Setting up

• "I need to talk to you about something important"
• Find a private, quiet space
• Sit at eye level, phone on silent
• Ask who they would like present
• Have tissues and water available

Talking to parents

• "What is your understanding of what's happening?"
• "I wish things were different."
• "What matters most to you and your child right now?"
• "You don't have to make any decisions right now."
• Be clear — say "dying" not "passing away"

Talking to the child

• Use the child's own words for illness
• "Your body is very poorly and the medicines can't make it better"
• Avoid "going to sleep" — use "dying" gently
• Let the child lead with questions
• Drawing and play can open conversations

Supporting siblings

• "It is not your fault"
• "It's okay to feel sad, angry, or confused"
• Include siblings in visits if they want
• Schools should be informed
• Signpost to Winston's Wish

Home

• Often the family's preference
• Requires community nursing support
• Anticipatory medications delivered
• Clear out-of-hours plan
• GP, community team, hospice involved

Hospice

• Respite, symptom management, end-of-life care
• Families can stay together
• Expert bereavement support
• Not all areas have a local hospice

Hospital

• May be needed for complex symptoms
• Aim for a side room with family facilities
• Palliative care team involved alongside ward
• Flexible visiting

Memory making

• Hand and foot prints or casts
• Locks of hair, photos, memory boxes
• Journals, letters, or recordings
• Cold cots allow time after death
• Offer gently — never push

Verification

• Doctor verifies death
• If expected, GP or community team can attend at home
• Death certificate issued by attending doctor

Care after death

• Wash and dress the child with family if they wish
• Cold cot or cool room gives families time
• Explain normal physical changes

Practicalities

• Register the death within five days
• Give written information about next steps
• Offer chaplain or spiritual support

Bereavement support

• Follow up — a card, a call, an appointment
• Winston's Wish (siblings)
• The Compassionate Friends
• Local hospice bereavement services
• Staff debrief and wellbeing support

Best interests

• Decisions made in the child's best interests
• Not the same as what parents want or team prefers
• About what is right for this child

Treatment decisions

• No ethical difference between withholding and withdrawing
• Shifting from cure to comfort is not "giving up"
• DNACPR means not restarting the heart — not withdrawing all care

Disagreement

• When parents and team disagree, mediation and ethics committees help
• Courts may become involved
• Your role: listen, document, advocate for the child

Student nurse role

• Be present — sitting quietly with a family matters
• Ask your mentor how you can help
• It is okay to feel upset — that is human
• Write a reflective account afterwards
• Use supervision and debrief