
Contents
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Who needs paediatric palliative care? Who needs paediatric palliative care?
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The emergence of a new specialty The emergence of a new specialty
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Background Background
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Provision of paediatric palliative care Provision of paediatric palliative care
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References References
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References References
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Differences between paediatric and adult palliative care Differences between paediatric and adult palliative care
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Developmental factors Developmental factors
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Approach to consultation Approach to consultation
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Physiology/pharmacokinetics Physiology/pharmacokinetics
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Differences in family structure and function Differences in family structure and function
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School School
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Illness trajectory Illness trajectory
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Ethical issues in paediatric palliative care Ethical issues in paediatric palliative care
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Autonomy Autonomy
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Decision-making in the palliative care setting Decision-making in the palliative care setting
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Competence Competence
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Decision-making regarding life-sustaining treatment Decision-making regarding life-sustaining treatment
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Disagreement Disagreement
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Advance care planning Advance care planning
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Advance care plans should record Advance care plans should record
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Provision of hydration and nutrition Provision of hydration and nutrition
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Medical ethics in different cultures Medical ethics in different cultures
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Psychosocial needs in paediatric palliative care Psychosocial needs in paediatric palliative care
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Communicating with children about death and dying Communicating with children about death and dying
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Supporting the sick child Supporting the sick child
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Reference Reference
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Supporting parents Supporting parents
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Communicating difficult information to parents Communicating difficult information to parents
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How should difficult news be delivered? How should difficult news be delivered?
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Parental reaction to bad news Parental reaction to bad news
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What parents need to know What parents need to know
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Families need to know that Families need to know that
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Parents’ needs and the role of the health professional Parents’ needs and the role of the health professional
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Information Information
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Time to be listened to Time to be listened to
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Control Control
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Emotional support Emotional support
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Practical support Practical support
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Sibling needs Sibling needs
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Information Information
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Routine Routine
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Emotional support Emotional support
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Contact with the sick child Contact with the sick child
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Inclusion in the care of the sick child Inclusion in the care of the sick child
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School School
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Further reading Further reading
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Further reading Further reading
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Community-based care Community-based care
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Bereavement Bereavement
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The dying process The dying process
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Staff support Staff support
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Risk factors Risk factors
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References References
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References References
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Strategies for self-care Strategies for self-care
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References References
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Drugs and doses Drugs and doses
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Introduction to drugs and doses Introduction to drugs and doses
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Drug information Drug information
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Planning care Planning care
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Medical assessment Medical assessment
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Explanations Explanations
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Plans Plans
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Communication Communication
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Review Review
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Routes for drug administration Routes for drug administration
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Agitation/delirium Agitation/delirium
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Management Management
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General measures General measures
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Medication Medication
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Anorexia Anorexia
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Management Management
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General measures General measures
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Bleeding Bleeding
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Management Management
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General measures General measures
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Medication Medication
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Bleeding gums Bleeding gums
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Tranexamic acid Tranexamic acid
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Topical adrenaline Topical adrenaline
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Sorbsan dressing Sorbsan dressing
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Vitamin K Vitamin K
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Vaginal bleeding Vaginal bleeding
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Catastrophic haemorrhage Catastrophic haemorrhage
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Breathlessness Breathlessness
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Management Management
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General measures General measures
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Oxygen Oxygen
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Medication Medication
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Morphine Morphine
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Benzodiazepines Benzodiazepines
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Dexamethasone Dexamethasone
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Radiotherapy Radiotherapy
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Constipation Constipation
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Management Management
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General measures General measures
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Medication Medication
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Convulsions Convulsions
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Management Management
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Acute management of a fit Acute management of a fit
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Cough Cough
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Consider causes and treat reversible factors if appropriate: Consider causes and treat reversible factors if appropriate:
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Management Management
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General measures General measures
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Medication Medication
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Gastro-oesophageal reflux Gastro-oesophageal reflux
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Management Management
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General measures General measures
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Medication Medication
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Omeprazole Omeprazole
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Lansoprazole Lansoprazole
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Ranitidine Ranitidine
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Antacids Antacids
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Metoclopramide and domperidone Metoclopramide and domperidone
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Gastrostomy care Gastrostomy care
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Considerations Considerations
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Blockage Blockage
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Granulation tissue Granulation tissue
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Infection Infection
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Dislodged tubes Dislodged tubes
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Infection at the end of life Infection at the end of life
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Mouth care Mouth care
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Management Management
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General measures General measures
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Oral candidiasis Oral candidiasis
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Ulcers/mucositis Ulcers/mucositis
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Muscle spasm Muscle spasm
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Management Management
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General measures General measures
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Caution Caution
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Nausea and vomiting Nausea and vomiting
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Consider cause Consider cause
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Management Management
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General measures General measures
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Medication Medication
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Noisy breathing Noisy breathing
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Pain Pain
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Recognizing pain in children with communication difficulties Recognizing pain in children with communication difficulties
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Management Management
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General measures General measures
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Medication Medication
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Non-opioid analgesics for mild/moderate pain Non-opioid analgesics for mild/moderate pain
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Non-steroidal anti-inflammatory drugs (NSAIDs) Non-steroidal anti-inflammatory drugs (NSAIDs)
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Opioid analgesics for moderate/severe pain Opioid analgesics for moderate/severe pain
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Other side effects which should be anticipated and promptly managed Other side effects which should be anticipated and promptly managed
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Strong opioids Strong opioids
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Morphine sulfate Morphine sulfate
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Diamorphine hydrochloride Diamorphine hydrochloride
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Fentanyl Fentanyl
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Buprenorphine Buprenorphine
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Oxycodone Oxycodone
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Pain syndromes and adjuvant therapy Pain syndromes and adjuvant therapy
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Bone pain Bone pain
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Radiotherapy Radiotherapy
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Non-steroidal anti-inflammatory drugs (NSAIDs) Non-steroidal anti-inflammatory drugs (NSAIDs)
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Selective COX-2 inhibitors Selective COX-2 inhibitors
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Bisphosphonates Bisphosphonates
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‘Resistant’ and neuropathic pain ‘Resistant’ and neuropathic pain
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Tricyclic antidepressants Tricyclic antidepressants
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Anticonvulsants Anticonvulsants
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Ketamine Ketamine
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Methadone Methadone
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Nerve blocks, spinal administration, and other neuroanaesthetic approaches Nerve blocks, spinal administration, and other neuroanaesthetic approaches
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Pain associated with tumour-related oedema Pain associated with tumour-related oedema
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Steroids Steroids
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Painful procedures Painful procedures
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Psychological issues—anxiety and depression Psychological issues—anxiety and depression
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Management Management
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General measures General measures
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Anxiety Anxiety
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Medication Medication
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Depression Depression
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Raised intracranial pressure Raised intracranial pressure
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Management Management
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General measures General measures
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Skin Skin
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Management Management
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General measures General measures
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Medication Medication
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Sleeplessness Sleeplessness
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Management Management
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General measures General measures
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Terminal restlessness Terminal restlessness
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Ventilation at home Ventilation at home
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Levels of ventilation Levels of ventilation
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Nocturnal ventilation Nocturnal ventilation
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24h ventilation 24h ventilation
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General measures General measures
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Further reading Further reading
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Further reading Further reading
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Cite
Abstract
This chapter describes the emergence of the field of paediatric palliative care. It looks at the differences between children’s palliative care and the adult world. It goes on to discuss the management of various symptoms looking particularly at the pharmacological approaches that can be used. All dosages are aligned with the Association of Paediatric Palliative Medicine formulary guidelines. Advances in the treatment of life-threatening neonatal and paediatric conditions have dramatically improved survival rates over recent years. One of the most striking reductions in mortality has been achieved for children with malignant conditions, although there remain certain forms of cancer for which the prognosis remains extremely poor. Similarly, despite advances, there is a range of non-malignant conditions which continue to be life-limiting. The patient population in paediatric palliative care is quite different from that encountered in adult practice. Approximately 25–30% of children with palliative care needs have a malignancy.
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