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Paediatric Anaesthesia Input into End of Life Care

Paediatric Anaesthesia Input into End of Life Care. Dr Glyn Williams. All pictures reproduced with permission. Why children d ie Provision of services Anaesthesia Symptom care. Why Children Die. Patterns changing Improved medical management RS/CVS causes ↓

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Paediatric Anaesthesia Input into End of Life Care

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  1. Paediatric Anaesthesia Input into End of Life Care Dr Glyn Williams All pictures reproduced with permission

  2. Why children die • Provision of services • Anaesthesia • Symptom care

  3. Why Children Die • Patterns changing • Improved medical management • RS/CVS causes ↓ • 2011 – Cancer/Congenital Abnormalities most common • Mortality rates ↓ • 1981 30/100,000 • 2011 11/100,000

  4. Life Limiting Conditions • ↑ Prevelance • 25 → 32/10,000 • Ethnic Minorities • Economically deprived areas • Fraser 2012 • Congenital Abnormalities most common (31%) • Basis of Palliative Care provision • Input based on: • Needs of patient • Course of disease • Devise EOLC • End of life care pathway

  5. Service Provision • 5 Tertiary centres in UK • 9 Consultants • 48 Children`s Hospices • Rest dependent on local resource • Own training pathway and CCT • Review ongoing Better Care Better Lives-2008 (DoH)

  6. Community services Support group Specialist pall. Care team PCN team Child and Family Tertiary Centre Hospice Education Local hospital Social services

  7. Role of Anaesthetist • Intensive Care/Resus • Surgery/Procedures • Symptom Management

  8. Anaesthesia/Procedure Management • Investigations: • MRI, CT, Bx, BMA etc • Procedures: • Venous Access, Gastrostomy etc • Surgery: • Curative/Palliative • Elective/Emergency • Minor Complex Major • Need to assess: • Medical Condition • EOLC • Benefit vs Risk • Quality of life • Ethical considerations • Multi-disciplinary approach • Communication • Little in literature to help • Case series/reports • Anaesthetic/Patient preference

  9. Scenario 1 • 5yr Girl, SMA Type 1 • Non – invasive ventilation • Recurrent chest infections • Wheelchair bound • Poor nutrition • Has EOLC with DNR order • For Gastrostomy

  10. Preoperative Discussion • Discussion of EOLC: • Adequate time frame • Benefit vs Risk • Important personnel • Family +/- Child • Primary Physician • Surgeon/Operator • Anaesthetist • Others e.g. ICU, involved medical teams, ethics • Surgical approach • Historical: • Suspend DNR order • Validity • Conflict • Families • Healthworkers • Professional Guidance • “Required Reconsideration”: • Set goals and limits of Tx • Communicate • Document • Staff can “stand back” • Can be re-evaluated as clinical course evolves

  11. Anaesthetic management • Theoretical: • Avoid • Sux + NDMR • Volatile • Epidural/Spinal • Judicious use opioids • Multi-modal analgesia • TIVA • Case Series: • 25 children, 56 interventions • 38% existing ventilator dependence • Mix of: • TIVA • Volatile +/- epidural • Volatile +/- opioid • Spinal • Technique did not influence outcome • Low rate complications • 2 Late deaths • Graham 2009

  12. Symptom Management • Not only Pain: • N&V • Spasticity • Constipation • Secretions • Anxiety • Dyspnoea • Reduced Mobility • Oedema • Insomnia • Fatigue • Depression • etc • Using EOLC • Goal Directed • Appropriate place • Multi-disciplinary • Flexible, adequate • Accessibility • Plans for escalation • Quality of life • Communication • Empowering families

  13. Pain in Paediatric Oncology • Prevalence: • End of life: • Symptoms in the last 7 days: • pain (67%) > change in behavior (54%) > not eating (38%) > change in appearance (29%) > dyspnea (29%) • Symptoms on the last day of life: • change in behavior (60%) > dyspnea (56%) > pain (40%) • Most helpful: analgesics • Pritchard 2008

  14. Scenario 2 5 year old girl with rhabdomyosarcomalocalised to left buttock. No mets. Father oncology surgeon. Mother lawyer. Elder 9 year old brother. Lives at home with grandparents and nanny. Localised relapses after radiotherapy and chemotherapy. Parents decided against radical hindquarter amputation procedure. Referred to palliative care team. Ongoing pain issues

  15. WHO Guidelines 2012 • 2 Step Process • Regular dosing • Appropriate route • Adapt Tx to individual child • Biopsychosocial model • Good Points • Adjuncts/Other Tx’s • Need for Pain Assessment • Need for improved access • Areas for Research

  16. But • Reliance on opioids • Often beyond stage 2 • Evidence either: • “Weak (strong) recommendation, (very) low quality evidence” • Opioids • Simple analgesics • Steroids • Biphosphonates • “..not possible to make a recommendation for or against the use of..” • Ketamine • Gabapentin • Tricyclics • Anticonvulasants • Local Anaesthetics • BDZs • Baclofen

  17. Initial management • Neuropathic pain in left leg: • Simple analgesics • MST 10mg • Gabapentin 150mg tds • Progression: • Add in Fentanyl patch 50mcg • compliance issues: • laser nerve root ablation • Left Lumbar

  18. Initial Success…..ish! • Good pain control • But: • Development of vesico-cutaneous fistula after laser therapy • Wore nappies under clothes. • Reduction in mobility: • left leg oedematous swelling • Dexamethasone 5mg bd. • Constipation: • oral laxatives • microlaxenemas. • Maintaining good quality of life: • Attended school and family events. • Rode bicycle. • Wheelchair when tired.

  19. Disease Progression • Markedly worsening pain • Escalating opioid use • 75-100mcg fentanyl patch • 120mg MST + breakthrough oral morphine • Increasing opioid related side-effects • Pain worse in left abdomen/pelvis/leg • Weight 14kg → 11kg • Hb ↓8.4 • Very poor quality of life: • unable to ride bike • withdrawn, • poor sleep • fatigue. • Disease progression but not end of life phase. • Interventions to maximise quality of life. • But what next?

  20. Opioids – how much? • 75 to 96 % of dying children receive opioids at the end of their lives • variable doses: • 3.7 mg/kg/d (range 0.09-1500) • Hewitt 2008 • Often large  in opioid need during the last days of life • Also very variable: • 1.88 mg/kg/d (range 0.25-24.5) • Drake 2003 • 2.04 mg/kg/d (range 0.024-1773.6) • Siden 2003 • The appropriate opioid dose is the dose that effectively relieves pain • But: • What is the appropriate dose? • What route? • Is it compatible with QOL? • Adjuncts? • Tolerance • Opioid induced hyperalgesia

  21. PCA/NCA-Proxy • Safe + Effective • In hospital: • Postop • Medical • SAE • PCA 0.3% • NCA 0.4% • Howard 2010 & In Press • Programming often different • Not opioid naïve • Use known usage • Titrate to effect • In oncologypain: (limited evidence) • Works • Safe (also whenusedbyproxy) • Providesautonomytopatientsandfamilies • Combinationwithotherdrugs • Athome: • Use • Efficacyandsafetyreported • Resourceissues: • Staff • Accessability • Education • Funding

  22. Adults: ↑ use as adjunct to PCA morphine ↓morphine consumption, improves respiratory outcome No increase in side-effects ? More effective as sole infusion Subramaniam 2004, Sveticic 2005, Michelet 2007 Children: No evidence on use with NCA/PCA ↑efficacy with oncology pain Batra2007, Conway 2009 Balance: Efficacy vs Quality of life Ketamine +/- Opioid P=0.01 James 2010

  23. Pain location localised or diffuse Anatomical access Unresponsive to: massive opioid use + adjuncts Dose limiting side-effects of opioids Poor quality of life Indications for Regional Anaesthesia

  24. Evidence • Boston (2013) • Case reports (65pts) • Own experience (9/yr) • Epidural/Intrathecal • Peripheral nerve/plexus blocks • Single shot/Continuous • LA • Severe/refractory pain • Opioid related side-effects • Spasticity • Overall: • Good efficacy • Improved quality of life • systemic opioid use • Death in preferred setting • Further case reports/Anecdotal use • Similar findings • Adjuncts: • Opioids • Clonidine • Ketamine

  25. Early: Infection Haematoma Respiratory Depression Motor/bladder function loss Headache Withdrawal Late: Infection Respiratory Depression Motor/bladder function loss Leakage Dislodgement Epidural fibrosis Taccyphylaxis LA Toxicity Potential Complications Benefit vs Risk

  26. Tunnelled Epidural • “Lazarus” effect • Awake, active, mobile • Pain free • Weaned off all opioid initially • Eating normally • Wt 14-16kg • Hb 11 • Nursed at Home • 5ml/hr L-Bupivacaine • Portable “Epifuser”

  27. All good things…! • Complications: • Displacement • Leakage • Slowly increasing pain • Required x4 epidurals • 1 – 10 days (fell out) • 2 – 2 days (fell out) • 3 – 2 weeks (leaking, displaced at insertion site) • 4 – 5 weeks (leaking, ↑pain) • ?Not really a viable option • Between epidurals: • opioid use • Quality of life continues • But: • Disease progression • Symptom progression • Need another plan

  28. Indwelling System • Which route? • Equipment • Internal pump • Age/size • Internal port + external delivery system • Resource: • Staff • Education • Place

  29. Management • Adjusting medication: • Wean systemic opioid • Intrathecal: • LA + Opioid + clonidine • At Home: • Mixture: • 0.1% L-Bupivacaine • 60mcg/ml morphine + 0.8mcg/ml clonidine • PrC”IT”A Infusion • 2ml/hr continuous • 1ml bolus, 30 min lockout • Max 12ml in 4hrs • Good Analgesia: • 1-3 bolus`/day • Much improved quality of life • A bit sleepy - ↓clonidine • Logistics: • Long hospital stay • Red tape • Local services • Staff education At home for 23 days

  30. Last 24 hours • Large bowel obstruction; • abdominal distension and pain • Nausea • Fatigue • Lower limb lymphoedema. • Loss of mobility • Tx – Continuous subcutaneous infusion • Hyoscine • Diamorphine, • Antiemetics • Midazolam. • Dyspnoea • buccaland nebulised morphine sulphate.

  31. Settled and died several hours later, at home with her family around her.

  32. Summary • No single answer • Always need to consider: • Individual patient and wishes • Quality of life • Perception of risk • Communication essential • Circumstances and plans change • We are only as good as the tools we have!

  33. Acknowledgements • Pain Service and Staff GOS • Palliative Care Team GOS • DiliniRajapakse • Friends/Experts • Boston • PPTC

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