Care without Cure: Palliative Medicine in Children Kristiansand, 13th April 2012

Richard Hain Consultant/Lead Clinician in Paediatric Palliative Medicine Visiting Professor, University of Glamorgan Honorary Senior Lecturer, Bangor University Wales, United Kingdom

Introduction • • • •

Paediatric palliative care in Wales Definitions of paediatric palliative care Case presentation Three principles of paediatric palliative medicine

Main message Doctors have something to offer in caring for children, even when cure is no longer possible

Children’s Hospital, Cardiff Main specialist team: •Consultant x 1.5 •Registrar •Administrator •PPC nurse •Physiotherapist •Oncology nurse •Social worker •Chaplain •Psychologist

Children’s Hospital, Cardiff Main specialist team: •Ward visits •Hospice visits •Home visits •School clinics •Satellite clinics •Telephone support

Children’s hospices •Independent •Nurse led •GP support •Specialist team support •Inpatient respite •Outreach services •Wide range of services -

Family support Bereavement Play therapy Music therapy

Local teams • Paediatrician with interest and training • PPC nurse • Oncology nurse • Joint satellite clinics with specialist team

“…an active and total approach to the care of children, embracing physical, emotional, social and spiritual elements” (Royal College of Paediatrics and Child Health, 1997)

“…includes the control of pain and other symptoms and addresses the psychological, social or spiritual problems of children (and their families)” (American Academy of Pediatrics, Pediatrics 106(2):352 Aug 2000)

Case presentation: JP (16y♀) Presentation: • Desmoplastic tumour right thigh • Recurred six months after maximal therapy • Severe pain

Case presentation: JP (16y♀) History of presenting complaint: • Severe leg pain despite Fentanyl patches – Radiates right leg and foot S3 – ‘Pins and needles’

• Pain in right groin – Localised, well-defined – Dull

Case presentation: JP (16y♀) Psychosocial history: • • • • •

Traveller (Romany) family Oldest of five sisters Father left for another relationship Father lives on same estate Returns occasionally for conjugal visits and to beat up mother and daughters.

Case presentation: JP (16y♀) Spiritual history: • • • •

Committed Protestant Christian Mixed with family and cultural beliefs Hates father - won’t see him Blames mother - won’t let her in hospital ward

Case presentation: JP (16y♀) Examination: • • • • •

Oedema left leg Reduced sensation rightt leg and foot Tender swelling in groin Angry, resentful No signs depression

Case presentation: JP (16y♀) • Palliative chemotherapy ? • Or analgesics ?

• Or what ?

Three basic principles 1. Balance of burden and benefit 2. Rational approach is compassionate 3. All dimensions of experience

1. Balance burden and benefit

1. Balance burden and benefit Burden

1. Balance burden and benefit Burden

Benefit

1. Balance burden and benefit Benefit

Burden

Palliative chemotherapy ?

1. Balance burden and benefit Benefit

Burden

Palliative chemotherapy ?

‘Doing something'

1. Balance burden and benefit Benefit

Burden

Palliative chemotherapy ?

‘Doing something' Prolonged life

1. Balance burden and benefit Benefit

Burden

Palliative chemotherapy ?

‘Doing something' Prolonged life Pain relief

1. Balance burden and benefit Benefit

Burden

Palliative chemotherapy ?

Adverse effects

‘Doing something' Prolonged life Pain relief

1. Balance burden and benefit Benefit

Burden

Palliative chemotherapy ?

Adverse effects ‘Medicalisation’

‘Doing something' Prolonged life Pain relief

1. Balance burden and benefit Benefit

Burden

Palliative chemotherapy ?

Adverse effects ‘Medicalisation’ Invasion of privacy

‘Doing something' Prolonged life Pain relief

1. Balance burden and benefit Benefit

Burden

Palliative chemotherapy ?

Adverse effects ‘Medicalisation’ Invasion of privacy

‘Doing something' Prolonged life

1. Balance burden and benefit Benefit Burden

Palliative chemotherapy ?

Adverse effects ‘Medicalisation’ Invasion of privacy Prolonged life

‘Doing something'

1. Balance burden and benefit Burden

Benefit

1. Balance burden and benefit Benefit

Burden To prescribe morphine ?

1. Balance burden and benefit Benefit

Burden To prescribe morphine ?

Constipation

1. Balance burden and benefit Benefit

Burden To prescribe morphine ?

Constipation ‘Medicalisation’

1. Balance burden and benefit Benefit

Burden To prescribe morphine ?

Constipation ‘Medicalisation’ Impending death

1. Balance burden and benefit Benefit

Burden To prescribe morphine ?

Constipation ‘Medicalisation’ Impending death

Pain relief

1. Balance burden and benefit Benefit

Burden To prescribe morphine ?

Constipation ‘Medicalisation’ Impending death

Pain relief Good sleep

1. Balance burden and benefit Benefit

Burden To prescribe morphine ?

Constipation ‘Medicalisation’ Impending death

Pain relief Good sleep Relief from dyspnoea

1. Balance burden and benefit Benefit

Burden PCA instead of oral ?

1. Balance burden and benefit Benefit

Burden PCA instead of oral ?

Allows pain Prolongs hospital stay Need for IV

Convenience Immediacy Less opioid

1. Balance burden and benefit Benefit Burden PCA instead of oral ?

Allows pain Prolongs hospital stay Need for IV

Convenience Immediacy

Summary • Model of service in Wales • Palliative care in children is: - Active - Total - Multidimensional

• Three principles: 1. Balance of burden and benefit 2. Rational 3. Multidimensional