Oxford Textbook of Palliative Care for Children

About this Book

• The first definitive textbook on the subject of paediatric palliative care
• 2 colour text throughout, with a full colour plate section
• Identifies the medical, psychological, practical, and spiritual issues of caring for terminally ill children and their families
• Promotes a model of care that addresses the complex and multifaceted needs of children with life-threatening illnesses and their families

The first edition of this book was the first authoritative, systematic and comprehensive text to define the increasingly important and evolving specialty of paediatric palliative care. It explores both the clinical aspects and the multidimensional and holistic nature of care for the dying child, based on the knowledge that all human experience has a physical, emotional, psychological and spiritual impact. The book covers ways of providing support in all of these areas both for the child, families, and carers, recognising the importance of teamwork and taking an evidence-based approach.

The Oxford Textbook of Palliative Care for Children is about the care of children for whom cure of their underlying disease is not possible. It encompasses the physical management of symptoms such as pain and nausea, as well as social issues such as accessing appropriate education, emotional issues such as techniques for communication, and spiritual issues such as feelings of guilt and isolation. The book suggests that if we are to maintain the quality of life for a child it is essential to recognise all these dimensions and try to address them. This can only be done by recognising the skills of a wide range of professionals and working together in ways that are not always intuitive to any one discipline. It explores the multidimensional and holistic nature of care for the dying child.

Those working in paediatric palliative care recognise that all human experience has emotional, psychological and spiritual impact as well as physical, and this book offers the essential information needed for those involved in paediatric care to find ways of providing support in all of these areas.

Comprehensive in scope, exhaustive in detail, and definitive in authority, this second edition has been thoroughly updated to cover new practices, current epidemiological data and the evolving models that support the delivery of palliative medicine to children. Paediatric palliative care is now developing in countries with differing health care systems, and being adapted to suit individual illnesses and the varying resources and geography in different parts of the world. This book is an essential resource for anyone who works with children worldwide.

Readership: Ideal for physicians, nurses, physiotherapist, occupational therapists, play therapists, complementary therapists, psychologists, educationalists, chaplains, psychiatrists, counsellors, and social workers

New to this edition

• Updated to cover new practices, current epidemiological data, and the evolving models that support the delivery of palliative medicine to children

Table of Contents

1. Katrina McNamara-Goodger and Chris Feudtner: History and epidemiology
2. Jenny L. Hynson: The child's journey: Transition from health to ill-health
3. Jennifer W Mack and Stephen Liben: Communication
4. Vic Larcher and Frank Carnevale: Ethics
5. Sandra Bertman: Through the creative lens of the artist: Society's perceptions of death in children
6. Nancy Contro and Sarah Scofield: The power of their voices: assessing the child and family
7. Myra Bluebond-Langner and Megan Nordquest Schwallie: Children's views of death
8. Jan Aldridge and Barbara M Sourkes: The psychological impact of life-limiting conditions on the child
9. Finella Craig and Victoria Lidstone: Adolescents and young adults
10. Trygve Aasgaard and Melinda Edwards: Children expressing themselves
11. Erica Brown: Education and school
12. Susie Lapwood and Ann Goldman: Impact on the family
13. Robert Macauley and Cynda Hylton Rushton: Spirituality and meaning in children, families, and clinicians
14. Erica Brown and Frances Dominica: Around the time of death - culture, religion and ritual
15. Sara Portnoy and Di Stubbs: Bereavement
16. Dilini Rajapaske and Maggie Comac: Symptoms in life-threatening illness: overview and assessment
17. Nigel Ballantine and Elizabeth Bing Daglish: Using medications in children
18. Antoine Bioy and Chantal Wood: Introduction to pain
19. Anne Hunt: Pain assessment
20. Richard D. W. Hain, Ross Drake, and Stefan J. Friedrichsdorf: Pharmacological approaches to pain: 'By the ladder' - the WHO approach to management of pain in palliative care
21. Ross Drake, Stefan J. Friedrichsdorf and Richard D. W. Hain: Pharmacological approaches to pain: Simple analgesics and opioids
22. Renee McCulloch: Pain: Adjuvants for neuropathic and bone pain
23. Leora Kuttner: Pain: An integrative approach
24. Mike Miller and Marek Karwacki: Management of the gastro-intestinal tract in paediatric palliative medicine
25. Angela Thompson, Anita MacDonald, and Chris Holden: Feeding in palliative care
26. Julie M. Hauer and Kate W. Faulkner: Neurological and neuromuscular conditions and symptoms
27. Anna C. Muriel, Renée C. V. McCulloch, and Jim F. Hammel: Depression, anxiety, and delirium
28. Lynda Brook, Emma Twigg and Amanda Venables: Respiratory symptoms
29. Yi Fan Liang and Jacqueline Denyer: Skin symptoms
30. Mei-Yoke Chan: Haematological symptoms
31. Michelle Meiring and Rene Albertyn: Palliative care for children with hiv/aids
32. Dawn Davies and Rachel Parry: Care in the final hours and days
33. Angela M. Johnson and David M. Steinhorn: Integrative medicine in paediatric palliative care
34. Jan Vickers and Jody Chrastek: Place of care
35. Brian Carter and Finella Craig: Intensive care units
36. Danai Papadatou: The good-enough health care provider
37. Linda Ferguson, Susan Fowler-Kerry and Richard Hain: Education
38. Javier R. Kane and Justin N. Baker: Quality improvement
39. Joanne Wolfe and Hal Siden: Research in paediatric palliative care
40. Joan Marston and Lizzie Chambers: International aspects
41. Formulary

Author Information

Ann Goldman, Consultant in Paediatric Palliative Care, Great Ormond Street Hospital, London, UK, Richard Hain, Lead Clinician, Welsh Paediatric Palliative Medicine Managed Clinical Network Visiting Professor, University of Glamorgan, UK, and Honorary Senior Lecturer, Bangor University, UK, and Stephen Liben, Director, Palliative Care Program, The Montreal Children's Hospital, Canada

Contributors:

Trygve Aasgaard, PhD, Associate Professor, Førsteamanuensis, Oslo University College, Høgskolen i Oslo, Norway
Dr. Rene Albertyn, Senior Researcher and lecturer (Pain and Palliative Care) - Dept Paediatric Surgery, Red Cross War Memorial Children's Hospital, and the University of Cape Town, South Africa
Jan Aldridge PhD, Consultant Clinical Psychologist, Martin House Children`s Hospice and Honorary Senior Lecturer, University of Leeds, UK
Justin Baker, MD, FAAP, Director, Division of Palliative and End-of-Life Care, Director, Hematology/Oncology Fellowship Program, Attending Physician, Quality of Life Service, Memphis, TN
Nigel Ballantine, Lead Cancer Pharmacist, Birmingham Children's Hospital NHS Foundation Trust Birmingham, UK
Sandra L. Bertman, PhD, FT, Distinguished Professor of Thanatology and Arts, National Center for Death Education, Mount Ida College, Newton, MA, USA
Antoine Bioy, Psychologist (PhD), University of Bourgogne and Bicêtre Hospital, Dijon, France
Myra Bluebond-Langner, Professor and True Colours Chair in Palliative Care for Children and Young People, Louis Dundas Centre for Children's Palliative Care, UCL-Institute of Child Health, London, UK and Board of Governors' Professor of Anthropology, Rutgers University, Camden NJ
Dr Lynda Brook, Macmillan Consultant in Paediatric Palliative Care, Alder Hey Children's Hospital City, Liverpool, UK
Erica Brown
Frank Carnevale
Brian S. Carter, MD, FAAP, Professor of Pediatrics (Neonatology), Director, NICU Follow-up Program, Monroe Carell Jr. Children's Hospital at Vanderbilt, Nashville, TN, USA
Lizzie Chambers
Dr Mei-Yoke Chan, Senior Consultant, Paediatric Haematology/Oncology, Department of Paediatric Subspecialties, KK Women's and Children's Hospital, Singapore
Joan " Jody' Chrastek, RN DNP CHPN, Pain and Palliative Care Coordinator, Minneapolis, MN , USA
Maggie Comac, Nurse Consultant, Ministry of Health, Kuwait, Kuwait
Nancy Contro , MSW, LCSW, Director of the Family Partners Program and Bereavement Services, Lucile Packard Children's Hospital at Stanford, Pediatric Palliative Care Program, , Palo Alto, California, USA
Finella Craig
Elizabeth B. Daglish, Regulatory Affairs Manager, SRA International, Inc., Abingdon, Oxfordshire, UK
Dr. Dawn Davies BScN, MD, FRCP(C), Medical Director, Pediatric Palliative Care Program, Stollery Children's Hospital; Associate Professor, Dept. of Pediatrics, University of Alberta, Edmonton, Alberta, Canada
Amy DeCicco, MLIS, Taxonomist, Gilt Groupe, New York, USA
Jackie Denyer
Sister Frances Dominica Ritchie, Founder and Trustee of Helen and Douglas House, Helen and Douglas House, Oxford, UK Dr Ross Drake, Paediatric Palliative Care and Pain Medicine Specialist, Clinical Director Paediatric Palliative Care and Complex Pain Services, Starship Children's Hospital, Auckland District Health Board, Auckland, New Zealand
Melinda Edwards
Kate Faulkner, MD, Medical Director, Partners Hospice, Waltham, MA, USA
Linda M. Ferguson, Professor, College of Nursing, University of Saskathewan, Saskatoon, Saskatchewan, Canada
Chris Feudtner
Suzanne Folwer-Kerry
Stefan J. Friedrichsdorf, MD, Medical Director: Department of Pain Medicine, Palliative Care & Integrative Medicine, Children's Hospitals and Clinics of Minnesota, Minneapolis, USA
Linda Hain
Dr Richard Hain, Lead Clinician, Welsh Paediatric Palliative Medicine Managed Clinical Network Visiting Professor, University of Glamorgan, UK, and Honorary Senior Lecturer, Bangor University, UK
Jim F. Hammel, M.D., M.A., M.Sc., US-UK Fulbright Scholar, University of Oxford, UK
Julie Hauer, MD, Medical Director, Seven Hills Pediatric Center Division, General Pediatrics, Complex Care Service Children's Hospital Boston Assistant Professor Boston, USA
Pam Hinds
Chris Holden, Head of Nutritional Care, Birmingham Children's Hospital, Birmingham, UK
Anne Hunt
Jenny Hynson
Dr Satbir Singh Jassal, Medical Director, Rainbows Children's Hospice, Loughborough, Leicestershire, UK
Angela Marie Johnson, MSTOM, MPH, Dipl OM, Lac, Practitioner of Oriental Medicine, Rush University Medical Center, Chicago, Illinois, USA
Javier R. Kane, MD, Associate Member, Division of Palliative and End-of-Life Care, Department of Pediatric Medicine, St. Jude Children's Research Hospital, Memphis, TN, US
Marek Karwacki M.D., Ph. D., Ntl. Research Institute for Mother and Child, Warsaw, Poland
Dr Leora Kuttner, Clinical Professor & Clinical Psychologist, Pediatric Department, BC Children's Hospital & University of British Columbia, Vancouver , CANADA
Vic Larcher
Dr. Susie Lapwood MA, BM BCh, MRCGP, DFSRH, Dip Pall Med (Dist), Lead Doctor, Helen and Douglas House Hospices for children and young adults, Oxford, UK
Mary Lewis
Yifan Liang, Consultant Paediatrician, The James Cook University Hospital NHS Trust Marton Road Middlesbrough, UK
Stephen Liben, Associate Professor of Pediatrics, McGill University
Dr Victoria Lidstone BM FRCP, Consultant in Palliative Medicine, All Wales Clinical Lead for Transition in Palliative Care, C/o Dept of Child Health, University Hospital of Wales, Cardiff, Wales, UK.
Robert C. Macauley, MD, MDiv, Associate Professor of Pediatrics, University of Vermont College of Medicine, Burlington, VT, USA
Dr Anita MacDonald, Consultant Dietitian in Inherited Metabolic Disorders Place of Work: Birmingham Childrens Hospital, Birmingham, UK
Jennifer W. Mack, MD MPH, Assistant Professor of Pediatrics, Harvard Medical School, Pediatric Hematology/Oncology, Children's Hospital Boston and Dana-Farber Cancer Institute , Boston, MA, USA
Katrina MacNamara-Goodger
Joan Marston
Dr Renée McCulloch, Lead Consultant in Paediatric Pain and Palliative Medicine, NBK hospital, Ministry of Health, Kuwait City, State of Kuwait and Honorary Senior Lecturer, Great Ormond Street Hospital/ Institute of Child Health, London, UK
Dr Michelle Meiring, Paediatric Palliative Care Consultant: Red Cross War Memorial Children's hospital, The Bigshoes Foundation and the University of Cape Town, South Africa
Michael Miller, Consultant in Paediatric Palliative Medicine, Martin House, Leeds, UK
Anna C. Muriel, MD, MPH, Division Chief, Pediatric Psychosocial Oncology, Dana-Farber/ Children's Hospital Cancer Center, Boston, USA
Megan Nordquest Schwallie, Doctoral Student, School of Social Service Administration, The University of Chicago, Chicago, USA
Danai Papadatou, Professor of Clinical Psychology Work setting: Faculty of Nursing, University of Athens, Greece
Rachel Parry
Sara Portnoy, Consultant Clinical Psychologist,: University College Hospital, London, UK and Life Force (Community paediatric palliative care and bereavement team) in Camden, Islington and Haringey, London, UK
Dilini Rajapaske
Cynda Hylton Rushton PhD,RN, FAAN, Associate Professor, Nursing and Pediatrics Faculty, Berman Institute of Bioethics, Program Director, Harriet Lane Compassionate Care, Johns Hopkins University School of Nursing
Claire Shaw, Senior Respiratory Physiotherapist, Alder hey Hospital, Liverpool
Hal Siden
Barbara M Sourkes PhD Associate Professor of Pediatrics and Psychiatry, Stanford University School of Medicine, Kriewall-Haehl Director, Pediatric Palliative Care Program, Lucile Packard Children's Hospital at Stanford, Palo Alto, California, USA
David M. Steinhorn, MD, FAAP, FAAHPM, Professor of Pediatrics, Northwestern University Feinberg School of Medicine, Ann & Robert H. Lurie Children's Hospital of Chicago, Children's Memorial Hospital, Chicago, Illinois, USA
Mildred Solomon
Di Stubbs, Freelance Bereavement Practitioner, Worcestershire, UK
Dr Angela Thompson, Associate Specialist, Palliative Care Lead Paediatrician , Coventry & Warwickshire, UK
Dr Emma Twigg, Clinical Psychologist, Alder Hey Children's Hospital, Liverpool, UK
Amanda Venables, Clinical Specialist Physiotherapist for Long Term Ventilation, Alder Hey Children's NHS Foundation Trust, Liverpool, UK
Janet Vickers, Consultant Nurse in Palliative Care Children and Young People, Specialist Palliative Care Team, Alder hey NHS Foundation Trust, Liverpool United, UK
Joanne Wolfe, MD, MPH, Director, Pediatric Palliative Care, Children's Hospital Boston; Division Chief, Pediatric Palliative Care Service, Department of Psychosocial Oncology and Palliative Care,
Dana-Farber Cancer Institute; Associate Professor of Pediatrics, Harvard Medical School, Boston, USA
Chantal Wood
Rannan-Eliya Yifan