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Published on : Aug 03, 2021 | Views : 1887 | Downloads : 0

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Slide 1-

Paediatric Palliative Care & Paediatric Palliative Pain Dr Emma Heckford Registrar 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.
Slide 2-

Introduction to Paediatric Palliative Care Pain in Paediatric Palliative Care Case Studies
Slide 3-

Introduction to Paediatric Palliative Care
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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’
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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’
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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
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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
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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
Slide 9-

Generic versus Specialist PPC Palliative Care Services for Children and Young People in England, DH 2007
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PPM Competencies
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Palliative Care Needs
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Palliative Care Needs
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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
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Causes of death in children (0-19yrs) likely to have required Palliative Care Neurological 36% Cancer 45% Congenital heart disease 11% Muscle disorders 5% Chronic renal failure 1% Cystic fibrosis 2%
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Disease trajectories Group 1 e.g. Cancer Group II e.g. Duchenne MD Group III e.g. Batten’s Normality Death Time (Years) 0 10 20 Group V e.g. Cerebral Palsy
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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
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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
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Which symptoms? Few studies Symptoms and their management poorly documented especially non-pain symptoms and especially if non-oncology diagnoses
Slide 19-

Which symptoms? Probably pain, dyspnoea, fatigue, nausea/vomiting the most prevalent Also fatigue, agitation, seizures, spasms, secretions, constipation, sleep disturbance, anxiety……
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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)
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Burden versus benefit Burden Benefit Possibly prolonged life Very small chance cure Avoids catastrophic bleed Partial gastrectomy? Major surgery Mortality/Morbidity Prolonged hospitalisation Not curative
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Burden versus benefit Burden Benefit Possibly prolonged life Very small chance cure Avoids catastrophic bleed Partial gastrectomy? Major surgery Mortality/Morbidity Prolonged hospitalisation Not curative
Slide 23-

Burden versus benefit Burden Benefit Possibly prolonged life Very small chance cure Avoids catastrophic bleed Partial gastrectomy? Major surgery Mortality/Morbidity Prolonged hospitalisation Not curative
Slide 24-

Pain in Paediatric Palliative Care
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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
Slide 26-

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
Slide 27-

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/insensitive/ partially insensitive
Slide 28-

SPIRITUAL Why me? Why our family? What will happen to me? EMOTIONAL Low mood Anger Anxiety Fear Frustration Helplessness, loss of control Altered body image Adjustment to transition to PC SOCIAL Social isolation Family and relationship issues Finances PHYSICAL Disease Treatment (surgery, RTx) Immobility, debility Procedural Other symptoms (constipation…) All exacerbated by poor sleep TOTAL PAIN
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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
Slide 30-

Pain assessment History Examination Tools BUT children may be…. Pre-verbal Non-verbal Cognitively impaired Frightened
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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
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Pain assessment tools FLACC Behaviour Scale
Slide 33-

Pain management WHO approach Current gold standard in PPM 3 tiers plus adjuvants at each stage
Slide 34-

WHO pain ladder NB Adjuvants to be considered at each stage STEP 1 Nonopioid +/- adjuvant STEP 2 Mild opioid for moderate pain +/- nonopioid +/- adjuvant STEP 3 Strong opioid for severe pain +/- nonopioid +/- adjuvant Increasing levels of pain or persistent pain despite therapy on a previous step in the ladder Paracetamol (Aspirin) Codeine Tramadol Paracetamol Morphine Other major opioids Paracetamol
Slide 35-

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
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Adjuvant analgaesics ‘Adjuvant’ = not primarily analgaesic but can improve pain in certain circumstances Neuropathic Anticonvulsants (CBZ, gabapentin) Antidepressants (amitriptyline) NMDA antagonists (methadone, ketamine) Bone NSAIDs Bisphosphonates RTx Chemo Surgery Inflammatory/Oedema Steroids Chemo Cerebral irritation Benzodiazepines Phenobarbitone Spasm Benzodiazepines Baclofen Tizanidine Botox Non-pharmacological Physiotherapy Psychology Family support
Slide 37-

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
Slide 38-

Myths about opioids Is morphine addictive doctor? If we start now, will we run out of options? Will it shorten his/her life?
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Adverse effects? Constipation Drowsiness Nausea and Vomiting Pruritis Urinary retention Respiratory depression
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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
Slide 41-

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
Slide 42-

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
Slide 43-

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
Slide 44-

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
Slide 45-

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”
Slide 46-

Case Studies
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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
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Codeine PRN Helped but very constipating Family reluctant to try major opioid Paracetamol PRN Regular oramorph titrated Then onto fentanyl patch Paracetamol
Slide 49-

Regular oramorph titrated Then onto fentanyl patch Paracetamol Non-pharmacological Respite and family support from local hospice Family support from Pall Care CNS Palliative Care team home visits as required Advance care planning and making choices Adjuvants NSAIDs not tolerated Bisphosphonates not practical Optimised seizure and spasm mx
Slide 50-

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
Slide 51-

SPIRITUAL Why her? Why our family? Questioning the faith EMOTIONAL Anger Fear Helplessness, loss of control Adjustment to transition to PC SOCIAL Social isolation Family and relationship issues Finances PHYSICAL Disease Treatment - RTx Dyspnoea TOTAL PAIN
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Paracetamol PRN Morphine IV infusion Then Diamorphine SC infusion Breakthrough - oramorph/ buccal diamorph/ sc diamorph
Slide 53-

Morphine IV infusion Then Diamorphine SC infusion Breakthrough - oramorph/ buccal diamorph/ sc diamorph Adjuvants NSAIDs Gabapentin helpful Optimised mx of secretions and dyspnoea
Slide 54-

Morphine IV infusion Then Diamorphine SC infusion Breakthrough - oramorph/ buccal diamorph/ sc diamorph Non-pharmacological Cultural sensitivity Open and sensitive discussions Management of parental expectations Regular review Advance planning and preparation for all eventualities
Slide 55-

Summary Introduction to Paediatric Palliative Care Pain in Paediatric Palliative Care Case Studies
Slide 56-

Take home messages Burden versus benefit Total pain Holistic approach Challenging the myths and optimising care
Slide 57-

Where to find out more (1) Textbooks:
Slide 58-

Where to find out more (2) Together for short lives resources www.togetherforshortlives.org.uk
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Where to find out more (3) Diploma in Palliative Care, Cardiff University
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“How people die remains in the memory of those who live on” Dame Cicely Saunders
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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….
Slide 62-

Limitations of WHO approach High dose codeine vs low dose morphine Incident pain (as opposed to breakthrough pain)
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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