PAEDIATRIC PALLIATIVE CARE PAIN MANAGEMENT Lynette Thacker Clinical Nurse Specialist Paediatric Palliative Care 07773281621 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.

Definition of Palliative Care Palliative care is the active, total care of the patient whose disease is not responsive to curative treatment. Control of pain, of other symptoms, and of social, psychological and spiritual problems is paramount. Palliative care is interdisciplinary in its approach and encompasses the patient, the family and the community in its scope. In a sense, palliative care is to offer the most basic concept of care – that of providing for the needs of the patient wherever he or she is cared for, either at home or in the hospital. Palliative care affirms life and regards dying as a normal process; it neither hastens nor postpones death. It sets out to preserve the best possible quality of life until death. (European Association for Palliative Care 1998)

What is Pain Pain is an emotion experienced in the brain, it is not like touch, taste, sight, smell or hearing. Pain can be perceived as a warning of potential damage, but can also be present when no actual harm is being done to the body. “Pain is what the individual tells us they are experiencing, where it is, when it occurs, what it feels like, what makes it better and when its disappeared.” It is categorised into: Acute pain - less than twelve weeks duration and may serve as a warning of injury and tissue damage, this pain may not necessarily be associated with major or persistent changes in lifestyle or relationships. Chronic pain - of more than twelve weeks, which may be persistent or recurrent, is often associated with substantial alterations in behaviour and in relationships.

Definitions of Types of Pain Experienced in Palliative Care Allodynia - Pain due to a stimulus that does not normally provoke pain. For example, stroking the skin lightly with clothes or cotton wool will produce pain. Causalgia - Disruption in normal flow of sensory information along nerve to brain, creating a confusion for the brain, which is interpreted as a constant , uniquely disabling pain state which is highly resistant to normal forms of medical therapy. Deafferentation pain - Pain that occurs, often after trauma or surgery, presenting as neuropathic pain in an area of numbness or loss of sensation. Hyperalgesia - The perception of a painful stimulus as more painful than normal. Neuralgia - Pain in the distribution of a nerve or nerves Neuropathic pain - Is pain initiated or caused by a primary lesion or dysfunction in the peripheral or central nervous system. For example pain following shingles, or an amputation, or spinal cord trauma. (The British Pain Society 2006-2007-2008)

TYPES OF PAIN NOCICEPTIVE Somatic Viscera bones, joints connective tissues Muscles Aching, often constant May be dull or sharp Often worse with movement Well localized Organs – heart, liver, pancreas, gut, etc. Constant or crampy Aching Poorly localized Referred

NEUROPATHIC Deafferentation Sympathetic Maintained Peripheral

When Do Children Experience Pain Pains experienced by children with palliative care conditions are a result of: Investigations Treatment Disease Disability secondary to the disease process Coincidental to the disease. Both acute and chronic.

Palliative Care Approach To Pain Control Thorough assessment of the pain experience by skilled and knowledgeable professional. Assessment of pain includes history, location, intensity or severity, quality (description), duration, pattern, current treatment and response to treatment (pharmacological and non-pharmacological; interventional analgesia), physical examination. Discuss with child (if cognitively appropriate) and family the goals of care, hopes, expectations, anticipated course of illness. Refer to medical team who may wish to undertake further investigations – X-Ray, CT, MRI, etc. For treatment of reversible causes of pain. Ongoing reassessment and review of options, goals, expectations, etc.

How Do We Assess Pain Choosing a pain assessment tool Pain Scales Use appropriate tool for the child’s age and cognitive development Use the same pain scale for the child

No Pain Mild Moderate Severe Worst Possible Self-report of pain The ability of children to describe and rate their own pain varies with their age, developmental stage, and health. Wong-Baker FACES Pain Rating Scale Numeric Rating Scale 0 1 2 3 4 5 6 7 8 9 10 No Pain Mild Moderate Severe Worst Possible

Behavioural Pain Tools Paediatric Pain Profile The Paediatric Pain Profile is a behaviour rating scale developed to assess pain in children with severe motor and learning disabilities. The tool is envisaged as a parent held document, and contains documentation of the child's pain history, baseline, and on-going pain assessments. Consists of: Pain history Current pain problems Childs behaviour on a good day Current pain behaviour Ongoing assessment of pain

Treating Pain The treatment of pain should not be about just giving medications.

Care Planning Components Pharmacological component Non – pharmacological component Monitoring component

Non-Pharmacologic Treatments Exercise Immobilisation Transcutaneous Electrical Nerve Stimulation (TENS) Acupunture Relaxation and Imagery Distraction Psychotherapy Hypnosis Peer support groups Counselling

3 2 1 Strong opioid +/- adjuvant Weak opioid +/- adjuvant W.H.O. ANALGESIC LADDER By the Clock 3 Strong opioid +/- adjuvant 2 Weak opioid Severe Pain Morphine Diamorphine Fentanyl +/- adjuvant 1 Non-opioid Moderate Pain Codeine Transaxmic Acid +/- adjuvant Pain persists or increases Mild Pain Paracetamol NSAID – Ibuprofen

Key Steps to Improving Pain Control Step 1 – Administer medications routinely, not as required Step 2 – Use the least invasive route of administration first Step 3 – Begin with low dose – titrate up Step 4 – Monitor and document effectiveness of medication each shift Step 5 – Reassess and adjust dose to optimise pain relief while monitoring and managing side effect

Opioids Safe effective analgesic Oral route effective as injectable No ceiling effect 7 – 10% population lack CYP2D liver enzyme: codeine cannot be metabolised and therefore will not be effective

Side Effects of Opioids Constipation – need proactive laxative use (Movicol) Nausea/vomiting – consider treating with dopamine antagonists and/or prokinetics (Metoclopramide, Prochlorperazine [Stemetil], Haloperidol) Urinary retention (warm bath may help) Itch/rash – worse in children. May try antihistamines, however not great success Dry mouth Respiratory depression – uncommon when titrated in response to symptom Drug interactions Neurotoxicity (OIN): delirium, myoclonus ® seizures

Adjuvant Analgesics first developed for non-analgesic indications subsequently found to have analgesic activity in specific pain scenarios Common uses: pain poorly-responsive to opioids (eg. neuropathic pain), or with intentions of lowering the total opioid dose and thereby mitigate opioid side effects.

Adjuvants Used In Palliative Care General / Non-specific corticosteroids cannabinoids (trial in adults with MS in ABMU) Neuropathic Pain gabapentin antidepressants ketamine Bone Pain bisphosphonates (calcitonin)

Professional Barriers to Effective Opioid Pain Control Fear of causing addiction Fear of regulatory and legal barriers Lack of experience with opioid analgesia Side effects

Parent Barriers to Effective Opioid Pain Control Parent and family fear of addiction which is rare when given for pain less than 1%. Misconception about side effects Reluctance to report pain Professional parent relationship

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