paediatric palliative care & paediatric palliative pain dr emma heckford may 2012 registrar in...

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

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

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

Benefit

Possibly prolonged lifeVery small chance cure

Avoids catastrophic bleed

Partial gastrectomy?

Major surgeryMortality/Morbidity

Prolonged hospitalisationNot curative

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



AdjuvantsNSAIDs

Gabapentin helpfulOptimised mx of secretions and

dyspnoea



Non-pharmacologicalCultural sensitivity

Open and sensitive discussionsManagement of parental expectations

Regular reviewAdvance planning and preparation for all

eventualities

Summary



Case Studies

Take home messages


Total pain

Holistic approach

Challenging the myths and optimising care

Where to find out more (1)

Textbooks:


Together for short lives resourceswww.togetherforshortlives.org.uk

http://www.togetherforshortlives.org.uk/


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

paediatric palliative care & paediatric palliative pain dr emma heckford may 2012 registrar in...

Documents

palliative careneurological36

paediatric palliative

specialist palliative

family choicese

young people

pc inputbut

hospital admission

child deaths