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PAEDIATRIC PALLIATIVE CARE & PAEDIATRIC PALLIATIVE PAIN
Dr Emma Heckford May 2012Registrar in Paediatric Palliative Medicine, University Hospital Wales
Disclaimer: Whilst every effort has been made to ensure that the information in this presentation is accurate and referenced the author does not accept any responsibility for the use by any third parties.
Introduction to Paediatric Palliative Care
Pain in Paediatric Palliative Care
Case Studies
Introduction to Paediatric Palliative Care
Palliative Care for Children
ACT/RCPCH definition (2009): “an active and total approach to care,
embracing physical, emotional, social and spiritual elements”
Active (not simply stopping treatment) Total
‘Best quality of life for patient and family throughout course of a life-limiting illness’
PPC - Since when?
Evolution over last 30 years Various models of care
based on local needs and resources
Paediatric Palliative Medicine now a recognised subspecialty
Currently in UK: 10 tertiary consultants ~ 50 ‘paediatricians with a special interest’
Why PPC?
At least 50% of child deaths in UK caused by LLCs
~ 20,000 children in England living with conditions likely to require PC input
But:- Symptom management suboptimal- Professional anxieties- Most children die in hospital, often intensive
care
Making a difference
Offering (and enabling) child and family choices
Improving quality of life – ‘as well as possible for as long as possible’
Supporting adjustment and goal setting
Improving experience of death
Improving bereavement outcomes
What can be done?
Good Clinical Care Symptom Control
Pain, Nausea, Vomiting, Constipation, Dyspnoea, Seizures, Spasticity, Hiccup, Sialorrhoea, Pruritis
Palliative Care Emergencies Bleeding, Pain, SCC, SVCO, Intestinal obstruction,
Hypercalcaemia
Facilitating child and family choices e.g. avoiding hospital admission, supporting care
at home
Psychosocial support EOL care planning and preparation Bereavement support
Generic versus Specialist PPC
Palliative Care Services for Children and Young People in England, DH 2007
PPM Competencies
PPM provision
Competencies
Level IV Skills expected of a doctor fully trained in specialist palliative medicine in children
Level III Specialist skills expected of someone trained in children and with a special interest in palliative medicine
Level II Generic palliative medicine skills expected of any doctor trained in paediatrics
Level I Generic palliative medicine skills expected of any professional
Palliative Care Needs
Palliative Care Needs
How is it different to PC in adults?
Different diagnoses, timescales, symptoms
Development and growth
Education
Ethical issues e.g. autonomy and consent
Family dynamics and family-centred care
Causes of death in children (0-19yrs) likely to have required Palliative Care
Neurological36%
Cancer45%
Congenitalheart disease
11%
Muscle disorders5%
Chronic renal failure 1%
Cystic fibrosis 2%
Disease trajectories
Group 1e.g. Cancer
Group IIe.g. Duchenne MD
Group IIIe.g. Batten’s
Normality
Death
Time (Years)0 10 20
Group Ve.g. Cerebral Palsy
When should PC be initiated?
Here?
No right or wrong answer
Death
Diagnosis
Here?
Or here?
….. But important to actively think about it
Ongoing treatment and palliative care not necessarily
contradictory
Transitioning to Palliative Care Benefits of early initiation
Sense of openness Attention to child’s quality of life Greater opportunity for families to make
choices
In practice, will depend on: Disease trajectory Need to re-align goals Readiness of child/family/professionals
Which symptoms?
Few studies
Symptoms and their management poorly documented especially non-pain symptoms and especially if non-oncology diagnoses
Which symptoms?
Probably pain, dyspnoea, fatigue, nausea/vomiting the most prevalent
Also fatigue, agitation, seizures, spasms, secretions, constipation, sleep disturbance, anxiety……
Balance of burden and benefit A key principle
Includes balancing of physical and emotional/spiritual aspects
Needs careful thought – e.g. ‘prolonging life’
No such thing as interventions that are always appropriate or inappropriate
Evidence-based (as far as possible)
Burden versus benefit
Burden Benefit
Possibly prolonged lifeVery small chance cure
Avoids catastrophic bleed
Partial gastrectomy?
Major surgeryMortality/Morbidity
Prolonged hospitalisationNot curative
Burden versus benefit
Burden
Benefit
Possibly prolonged lifeVery small chance cure
Avoids catastrophic bleed
Partial gastrectomy?
Major surgeryMortality/Morbidity
Prolonged hospitalisationNot curative
Burden versus benefit
Burden
Benefit
Possibly prolonged lifeVery small chance cure
Avoids catastrophic bleed
Partial gastrectomy?
Major surgeryMortality/Morbidity
Prolonged hospitalisationNot curative
Pain in Paediatric Palliative Care
Pain in Palliative Care
Often more than one cause May have both acute and chronic features (but not the
same as either) Rarely only physical Usually gets worse with time
Considerations: Balance of burden and benefit Route (incl buccal, transdermal) Practicality (often at home) Acceptability
Pain in Palliative Care
Unpleasant sensory and emotional experience
Entirely subjective – ‘what the patient says hurts’
Japanese study - 75% children with LLCs had pain in last weeks of life
Pragmatic Classification
Neuropathic Disordered sensation Responds to anticonvulsants and antidepressants
Bone Intense and focal Responds to NSAIDs and bisphosphonates
Muscle spasm Responds to muscle relaxants and antispasmodics
Cerebral irritation Caused by brain injury Signs of anxiety Responds to benzodiazepines
Opioid sensitive/insensitiv
e/partially insensitive
SPIRITUAL
Why me?Why our family?What will happen to me?
EMOTIONAL
Low moodAngerAnxietyFearFrustrationHelplessness, loss of controlAltered body imageAdjustment to transition to PC
SOCIAL
Social isolationFamily and relationship issuesFinances
PHYSICAL
DiseaseTreatment (surgery, RTx)Immobility, debilityProceduralOther symptoms (constipation…)All exacerbated by poor sleep
TOTAL
PAIN
Aims of assessment
To assess likely/possible causes: Treat reversible causes Identify most appropriate pain-relieving
measure/s
To establish a baseline: Can then judge improvements or not
Pain assessment
History
Examination
Tools
BUT children may be….
Pre-verbal
Non-verbal
Cognitively impaired
Frightened
Pain assessment tools
All children on regular analgaesics should ideally have routine assessment of their pain
The ideal tool: Practical – easy, quick and fun to use Validated Appropriately applied Developmentally and culturally appropriate
Special groups: Neonates, infants, developmental delay
Pain assessment tools
FLACC Behaviour
Scale
Pain management
WHO approach
Current gold standard in PPM
3 tiers plus adjuvants at each stage
WHO pain ladder
NB Adjuvants to be considered at each stage
STEP 1Nonopioid
+/- adjuvant
STEP 2Mild opioid for moderate pain+/- nonopioid+/- adjuvant
STEP 3Strong opioid for
severe pain+/- nonopioid+/- adjuvant
Increasing levels of pain or persistent pain despite therapy on a previous step in the
ladder
Paracetamol(Aspirin)
CodeineTramadol
Paracetamol
MorphineOther major
opioidsParacetamol
Golden Rules
By the ladder – do not rotate, move up
By the clock – major opioids regular with breakthrough
By the route - avoid needles if possible
By the child
Adjuvant analgaesics
‘Adjuvant’ = not primarily analgaesic but can improve pain in certain circumstances
NeuropathicAnticonvulsants
(CBZ, gabapentin)Antidepressants (amitriptyline)
NMDA antagonists (methadone,
ketamine)
BoneNSAIDs
BisphosphonatesRTx
ChemoSurgery
Inflammatory/OedemaSteroidsChemo
Cerebral irritation
BenzodiazepinesPhenobarbitone
SpasmBenzodiazepines
BaclofenTizanidine
Botox
Non-pharmacologicalPhysiotherapy
PsychologyFamily support
Initiating strong opioid therapy
What drug? Morphine - short acting formulation (Oramorph,
Sevredol) By mouth if possible
What dose? 1mg/kg/day = total daily dose E.g. 30kg – 30mg/day Then calculate 4 hrly dose = 5mg
And for breakthrough pain? Give the same 4 hourly dose as required – 5mg
Myths about opioids
1. Is morphine addictive doctor?
2. If we start now, will we run out of options?
1. Will it shorten his/her life?
Adverse effects?
Constipation
Drowsiness
Nausea and Vomiting
Pruritis
Urinary retention
Respiratory depression
Titration phase
Aim – to match the amount of analgesia given with the degree of pain experienced
Add up all doses taken in 24 hours Eg. 30mg + 15mg = 45mg 45mg ÷ 6 = 7.5mg Prescribe 7.5mg 4hrly and 7.5mg prn for
breakthrough pain
Maintenance phase
More convenient opioid preparations MST
E.g. If total daily Oramorph requirement: 45mg Appropriate MST dose: 22.5mg bd Breakthrough still 7.5mg oramorph prn
Other strong opioids Patches – fentanyl, buprenorphine S/C – diamorphine Also – methadone, oxycodone, hydromorphone Breakthrough usually still oramorph
Managing the maintenance phase
Keep reviewing need for breakthrough analgesia
Titrate background analgesia upwards (or downwards) as necessary
Keep thinking about adjuvants
Change route of drug delivery if necessary
Toxicity/Side effects
Symptoms and signs: Myoclonus, Pinpoint pupils, Itch, Sickness,
Reduced level of consciousness, Reduced RR
Think: ?Dose too high e.g. post RTx ?Reduced excretion e.g. renal impairment ?Time to rotate to a different drug
Opioid rotation
Calculate equivalent dose for the new drug
Decrease the total daily dose for the new drug by 25% (incomplete tolerance)
Prescribe background and breakthrough
Titrate
Don’t forget…..
Adjuvants
Non-pharmacological interventions
Managing other symptoms too
Talking and listening Explanation and understanding can go a long
way “the pain seemed to go by just talking”
Case Studies
Sophie
Teenager with severe cerebral palsy Less well over last 6/12 – chest infections,
spasms Fewer smiles, more agitated Scoliosis worse, history of hip dislocation Upset on moving and handling
Codeine PRN•Helped but very constipating•Family reluctant to try major opioid
Paracetamol PRN
Regular oramorph titratedThen onto fentanyl patch
Paracetamol
Regular oramorph titratedThen onto fentanyl patch
Paracetamol
Non-pharmacologicalRespite and family support from local
hospiceFamily support from Pall Care CNSPalliative Care team home visits as
requiredAdvance care planning and making
choices
AdjuvantsNSAIDs not tolerated
Bisphosphonates not practicalOptimised seizure and spasm
mx
Amina
6 month old baby Large family, Muslim faith Large tumour left thorax Delayed diagnosis Poor response to chemotherapy Respiratory compromise Palliative radiotherapy Hickman line in situ
SPIRITUAL
Why her?Why our family?Questioning the faith
EMOTIONAL
AngerFearHelplessness, loss of controlAdjustment to transition to PC
SOCIAL
Social isolationFamily and relationship issuesFinances
PHYSICAL
DiseaseTreatment - RTxDyspnoea
TOTAL
PAIN
Paracetamol PRN
Morphine IV infusionThen Diamorphine SC infusion
Breakthrough - oramorph/ buccal diamorph/ sc diamorph
Morphine IV infusionThen Diamorphine SC infusion
Breakthrough - oramorph/ buccal diamorph/ sc diamorph
AdjuvantsNSAIDs
Gabapentin helpfulOptimised mx of secretions and
dyspnoea
Morphine IV infusionThen Diamorphine SC infusion
Breakthrough - oramorph/ buccal diamorph/ sc diamorph
Non-pharmacologicalCultural sensitivity
Open and sensitive discussionsManagement of parental expectations
Regular reviewAdvance planning and preparation for all
eventualities
Summary
Introduction to Paediatric Palliative Care
Pain in Paediatric Palliative Care
Case Studies
Take home messages
Burden versus benefit
Total pain
Holistic approach
Challenging the myths and optimising care
Where to find out more (1)
Textbooks:
Where to find out more (2)
Together for short lives resourceswww.togetherforshortlives.org.uk
Where to find out more (3)
Diploma in Palliative Care, Cardiff University
“How people die remains in the memory of those who live on”
Dame Cicely Saunders
PCA for pain control in dying children Retrospecitve review (7 years, 8 children) Biggest increases when first set up and then
during last week of life Given iv ?could be sc also Daily pain scores remained low – 0 – 3/10 They suggest PCA as an ideal, dependable
and feasible mode of analgaesia Disadvantages….
Limitations of WHO approach
High dose codeine vs low dose morphine
Incident pain (as opposed to breakthrough pain)
Neonates
Start at reduced dose (30 – 50%) because:
Longer elimination (renal) Reduced hepatic enzyme activity (reduced
clearance) ?BBB more permeable Opioid receptors not fully developed
Safest to start low and titrate Ensuring free access to breakthrough
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