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Rainbows Basic Symptom Control in Paediatric Palliative Care Ninth edition, 2013 Basic Symptom Control in Paediatric Palliative Care The Rainbows Children’s Hospice Guidelines www.togetherforshortlives.org.uk Basic Symptom Control in Paediatric Palliative Care The Rainbows Children’s Hospice Guidelines Ninth Edition, 2013 ISBN: 1 898447284 Basic Symptom Control in Paediatric Palliative Care © Dr Satbir Singh Jassal Formulary © The Association for Paediatric Palliative Medicine (APPM), March 2012 The formulary is due for revision at the end of 2014 Author: Dr Satbir Singh Jassal B.Med Sci, B.M., B.S., DRCOG, Dip Pall Med, DFSRH, MRCGP, FRCPCH (Hon), Medical Director Rainbows Children’s Hospice and General Practitioner Production: Myra Johnson and Katrina Kelly, Together for Short Lives Design: Qube Design Associates Ltd Certified by the Information Standard Together for Short Lives is the leading UK charity that speaks for all children with life-threatening and life-limiting conditions and all those who support, love and care for them. When children are unlikely to reach adulthood, we aim to make a lifetime of difference for them and their families. Together for Short Lives 4th Floor, 48-52 Bridge House, Baldwin Street, Bristol BS1 1QB T: 0117 989 7820 [email protected] www.togetherforshortlives.org.uk Together for Short Lives is a registered charity in England and Wales (1144022) and Scotland (SC044139) and a company limited by guarantee (7783702) Disclaimer: Although Together for Short Lives has taken care to ensure that the contents of this document are correct and up to date at the time of publishing, the information contained in the document is intended for general use only. Users are hereby placed under notice that they should take appropriate steps to verify such information. No user should act or refrain from acting on the information contained within this document without first verifying the information and as necessary obtaining legal and/or professional advice. Any opinion expressed is that of Together for Short Lives alone. Together for Short Lives does not make any warranties, representations or undertakings about the content of any websites or documents referred to in this document. Any reliance that you place on the content of this document is at your own risk and Together for Short Lives expressly disclaims all liability for any direct, indirect or consequential loss or damage occasioned from the use or inability to use this document whether directly or indirectly resulting from inaccuracies, defects, errors, whether typographical or otherwise, omissions, out of date information or otherwise, even if such loss was reasonably foreseeable and Together for Short Lives had been advised of the possibility of the same. You should be aware that the law can change and you should seek your own professional legal advice if necessary. About Together for Short Lives About Together for Short Lives Together for Short Lives is the leading UK charity for all children with life-threatening and life-limiting conditions and all those who support, love and care for them – families, professionals and services, including children’s hospices. Our work helps to ensure that children can get the best possible care, wherever and whenever they need it. From the moment of diagnosis, for whatever life holds, we help to ensure that families make the most of their precious time together. There are an estimated 49,000 children and young people in the UK living with a life-threatening or life-limiting condition that may require palliative care services. We are there for every single one of these children, and their families, so they know where to go for help and are aware of the support available to them. With the right kind of information, it can become easier to access care and support, as well as practical and emotional help for the whole family when it’s needed most. We help families to access this information so they know what to expect at different stages throughout their journey and can make informed choices about their child’s care. We work closely with the organisations and professionals that provide important lifeline services to children and families. We support, lobby, and raise funds for children’s hospices and a range of other voluntary organisations to enable them to sustain the vital work they do. We offer resources and training to help them maintain consistent, high quality care from the moment a child is diagnosed, until their eventual death, and to continue supporting families for as long as they need it. We campaign for equal provision of specialised services for children with life-threatening and life-limiting conditions and families across the UK; and better co-ordination of health, social care and education. By working nationally we give a powerful voice to children, families and the organisations that support them, ensuring their views are heard by the government and that they influence policy. T: 0117 989 7820 [email protected] www.togetherforshortlives.org.uk Call the helpline: 0808 8088 100 Basic Symptom Control in Paediatric Palliative Care: The Rainbows Children’s Hospice Guidelines 3 Contributions and peer review Contributions and peer review Dr Justin Amery, GP in Oxford, Hospice Doctor at Dr Patrick Ireland, Retired Keech Hospice Helen Kenney, Respiratory Nurse Specialist, Rainbows Nigel Ballantine, Specialist Clinical Pharmacist, Children’s Hospice Haematology Oncology, Birmingham Dr Nicola King, Demelza House Hospice, Kent Ann Booth, RSCN, Rainbows Children’s Hospice Dr Susie Lapwood, Lead Doctor, Helen and Douglas Dr Lynda Brook, Macmillan Consultant in Paediatric House Hospices for children and young adults, Oxford Palliative Care, Alder Hey Children’s Hospital Julia Martin, RSCN Children’s Gastroenterology Nurse Dr Michael Capra, Lecturer in Paediatric Oncology, Specialist, LRI QMC Dr Renee McCulloch, Dr Renee McCulloch, Paediatric Susan Carr, Senior Pharmacist, Regional Drug Palliative Care Consultant, Great Ormond Street Information Centre LRI Hospital/Institute of Child Health, London Vanessa Chapman, Regional Prescribing and Drug Dr George Murty, Consultant ENT, Leicester Royal Information Development Pharmacist, LRI Infirmary Dr Finella Craig, Consultant in Children’s Palliative Dr Jill Platt, Retired Care, Great Ormond Street Hospital Dr Peter Sullivan, Consultant Paediatrician, Oxford Dr Jonathan Cusack, Consultant Neonatologist, University Hospitals of Leicester Dr Angela Thompson, Associate Specialist, Palliative Care Lead Paediatrician, Coventry and Warwickshire Chris Cutts, Paediatric Pharmacist, LRI Dhiraj D Vara, Head of Respiratory Physiology Unit Dr Henry Davis, Hospice Doctor, Acorns Hospice, Glenfield Hospital Leicester Birmingham Dr David Walker, Consultant Paediatric Oncologist, Lynne Demelo, Clicinal Nurse Specialist, Rainbows (Senior Lecturer) QMC Children’s Hospice Francis Edwards, Independent Nurse Consultant The authors have made every effort to check current data sheets and literature up to July 2013, but the Dr Richard Hain, LATCH Senior Lecturer and Honorary dosages, indications, contraindications and adverse Consultant in Paediatric Palliative Medicine, University effects of drugs change over time as new information Hospital of Wales is obtained. It is the responsibility of the prescriber to check this information with the manufacturer’s Dr Clare Hale, Deputy Medical Director, Rainbows current data sheet and we strongly urge the reader Children’s Hospice to do this before administering any of the drugs in this document. In addition, palliative care uses a Lucy Hawkes, Neonatal Pharmacist, University number of drugs for indications or by routes that are Hospitals of Leicester not licensed by the manufacturer. In the UK such unlicensed use is allowed, but at the discretion and Dr Anne Hunt, Senior Research Fellow in Children’s with the responsibility of the prescriber. Palliative Care, University of Central Lancashire 4 Basic Symptom Control in Paediatric Palliative Care: The Rainbows Children’s Hospice Guidelines Contents Contents A word from the editor 8 Uncertainty about whether a particular treatment will provide overall benefit 35 Foreword: Barbara Gelb 9 Impact on the family and wider Foreword: Joan Marston 10 healthcare team 35 Introduction 11 Specific situations 36 Fluid and electrolytes management 41 Symptoms 12 Gastro-oesophageal reflux 43 Anorexia 13 Gastrostomy care 45 Bladder 13 Hiccough 48 Bleeding 14 HIV and AIDS 49 Constipation 15 Pathophysiology of HIV/AIDS 50 Cough 18 Symptoms in AIDS 50 Diarrhoea 19 Pain 51 Dyspnoea 19 Other symptoms 51 Emergencies in paediatric palliative care 21 Infections 59 Uncontrolled or poorly controlled pain 22 Mouthcare 60 Sudden onset rapidly escalating Nausea and vomiting 61 opiate-sensitive pain 22 Neonatal palliative care 63 Neuropathic pain 22 Neurological 68 Breathlessness 23 Epilepsy 68 Superior vena cava (svc) obstruction 24 Intractable epilepsy 69 Spinal cord compression 24 Status epilepticus 70 Agitation 24 Terminal seizures or if not appropriate Cerebral irritability 25 to hospitalise 71 Acute pulmonary haemorrhage 25 Spasticity 72 Seizures 25 Myoclonus 72 Urine retention 26 Chorea 72 End of Life Management 26 Dystonia 73 Ethics and the law 32 Akathisia 73 Person with decision-making responsibility 33 Noisy breathing 74 Best interests 34 Pain assessment 74 Basic Symptom Control in Paediatric Palliative Care: The Rainbows Children’s Hospice Guidelines 5 Contents Pain 77 Bethanechol 112 Pain Management 79 Bisacodyl 112 Opioids 81 Buprenorphine 112 Opioid
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