Oxford Textbook of Palliative Care for Children

Section I: Foundations of care
1:History and epidemiology, Lorna Fraser, Stephen Connor, and Joan Marston
2:Communication, Jennifer Mack and Bryan Sisk
3: Children are not little adults the distinctiveness of ethics in children, Robert MacAuley and Richard Hain
4:Decision making with children, young people and parents, Myra Bluebond-Langner and Richard Langner
5:Culture, spirituality, religion, and ritual, Erica Brown, Mary Ann Muckaden, and Nokuzola Mndende
Section II: Child and family care
6:Assessment of the child and family, Nancy Contro and Jane Zimmerman
7:Children s views of death, Myra Bluebond Langner and Ignasi Clemente
8:The psychological impact of life-limiting conditions on the child, Jan Aldridge and Barbara M Sourkes
9:Adolescents and young adults, Chana Korenblum and Finella Craig
10:Children expressing themselves, Amy Volans and Emma Brown
11:Education and school, Sue Boucher
12:Impact on the family, Veronica Dussell and Barbara Jones
13:Bereavement, Sara Portnoy and Lori Ives Bain
Section III: Symptom care
14:Overview of symptoms and their assessment in life-limiting illness, Dilini Rajapakse and Maggie Comac
15:Using medication in children s palliative care, Andy Gray, Jane Ridden, Richard Hain
16:Introduction to pain, Antoine Bioy and Chantal Wood
17:Multimodal analgesia in pediatric palliative care, Stefan J. Friedrichsdorf
18:Opioids and the WHO pain ladder, Manuel Rigal, Ricardo Martino, and Richard Hain
19:Difficult pain: adjuvants or co-analgesics, Renee McCulloch and Charles Berde
20:Integrative approach to pain and other symptoms, David Steinhorn
21:Gastrointestinal and liver related symptoms in paediatric palliative care, Jo Laddie, Alta Terblanche, and Michelle Meiring
22:Feeding, cachexia and malnutrition in children s palliative care, Adam Rapoport,Sanjay Mahant and Michelle Meiring
23:Neurological and neuromuscular conditions and symptoms, Julie M. Hauer and Jori Bogetz
24:Depression, anxiety, and delirium, Pamela J. Mosher and Anna C. Muriel
25:Cardiorespiratory symptoms, Emily Harrop and Roxanne Kirsch
26:Skin symptoms, Carol Hlela, Rene Albertyn, and Michelle Meiring
27:Haematological symptoms, Mei-Yoke Chan and Kevin Weingarten
28:Palliative care for children with communicable illnesses, Michelle Meiring and Tonya Arscott-Mills
Section IV: Delivery of care
29:Perinatal palliative care, Áine Ni Laoire, Daniel Nuzum, Maeve O'Reilly, Marie Twomey, Keelin O Donoghue, and Mary Devins
30:Intensive-care units, Brian Carter
31:Planning care, Michelle Grunauer and Jenny Hynson
32:Care in the final hours and days, Dawn Davies and Justin Baker
33:Delivering care around the world, Julia Downing and Joan Marston
34:Healthcare providers responses to the death of a child, Danai Papadatou
35:Teamwork, Jan Aldridge and Pat Carragher
36:Education, Fiona Rawlinson and Michelle Meiring
37:Quality improvement in paediatric hospice and palliative care, Susan Blacker and Rachel Thienprayoon
38:Research in paediatric palliative care, Harold Siden and Kimberly Widger
Appendix 1:The Association of Paediatric Palliative Medicine Master Formulary, Fifth Edition, 2020

The importance of palliative care for children facing life threatening illness and their families is now widely acknowledged as an essential part of care, which should be available to all children and families, throughout the child's illness and at the end of life. The new edition of the Oxford Textbook of Palliative Care for Children brings together the most up to date information, current knowledge, evidence, and developments of clinical practice in the field.

• 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
• Includes two new chapters looking in detail at 'Decision Making' and 'Perinatal Care' and a new section highlighting the emerging importance of 'Palliative Care for Children in Humanitarian Crises'
• New section providing the voices of two parents telling their stories, offering thoughtful recommendations to clinicians
• Award Winner in the Paediatrics Category at the BMA Medicine Book Awards

New to this Edition:

• Includes two new chapters looking in detail at 'Decision Making' and 'Perinatal Care' and a new section highlighting the emerging importance of 'Palliative Care for Children in Humanitarian Crises'
• New section providing the voices of two parents telling their stories, offering thoughtful recommendations to clinicians

Edited by Richard Hain, Clinical Lead, Welsh Paediatric Palliative Medicine Managed Clinical Network; Visiting Professor, University of Glamorgan; and Honorary Senior Lecturer, Bangor University, Wales, UK, Ann Goldman, Paediatrician and Palliative Care Specialist, London, UK, Adam Rapoport, Medical Director, Paediatric Advanced Care Team (PACT),, The Hospital for Sick Children (SickKids), Canada, and Michelle Meiring, Course Convenor, Division of Palliative Medicine, School of Public Health and Family Medicine, University of Capetown, South Africa

Richard Hain is a Consultant and Clinical Lead in Paediatric Palliative Medicine in Wales. His clinical post is based at the Children's Hospital in Cardiff and he provides an all Wales specialist service via a managed clinical network. He also provides a secondary service for patients in Cardiff and the Vale University Health Board. Richard's academic background is varied and includes postgraduate degrees in pharmacology, professional education, and ethics and theology. He has co-authored over fifty research and review articles, four books on children's palliative medicine and a large number of book chapters. His primary research interest is in the principles and practice of paediatric palliative medicine, and he is increasingly focusing on clinical ethics in children at the end of life. He is honorary Professor in the College of Human and Health Sciences at Swansea University.

Ann Goldman is a paediatrician and is Vice President of Together for Short Lives. Ann was the first ever consultant in paediatric palliative care and, in 1986, established the Symptom Care Team at Great Ormond Street Children's Hospital, which was the first multi-disciplinary paediatric palliative care team. Ann has worked in clinical care for the children and their families, research and teaching, and has been at the vanguard of the development of palliative care services for children nationally and internationally. In 2004, she was awarded The Children's Hospice International Outstanding Leadership award. Ann was presented with the Vittorio Ventafridda Award at the Maruzza Foundation Rome Conference in November 2014. The award recognizes Ann's dedication and expertise in children's palliative care, both professionally and in her academic career.

Adam Rapoport is a general paediatrician with a Masters in bioethics. In 2009, Adam joined the Temmy Latner Centre for Palliative Care at Mount Sinai Hospital as their pediatric consultant. In July 2011, he became the first Medical Director of the Paediatric Advanced Care Team (PACT), the palliative care service at SickKids. PACT provides both inpatient and outpatient palliative care to children with life-threatening illnesses, and their families, including grief and bereavement support. In 2013, Adam became Medical Director at Toronto's first paediatric residential hospice - Emily's House. Adam's academic work focuses on the intersection of his three primary interests' paediatrics, palliative care, and ethics.

Michelle Meiring is the founding director of Paedspal and a Paediatric Palliative Care Consultant. She has over 13 years experience in paediatric palliative care and in the NGO sector. Her task at Paedspal is to provide management oversight and clinical leadership. Michelle is a senior lecturer in Palliative Medicine at UCT, South Africa where she convenes the paediatric elective for the Postgraduate Diploma at UCT and is also the chairperson of PATCH-SA (a national paediatric palliative care network).

The book is structured into four sections. 'Foundations of Care' describes core issues, the foundations on which paediatric palliative care is based. 'Child and Family Care' looks at different aspects of psychological, social, and cultural care for the sick child or young person, and their family. These chapters cover the time course of the illness, around the time of death and support for the bereaved family. 'Symptom Care' focuses on the uses of medication, specific symptoms, and their management. Finally, 'Delivery of Care' examines practical approaches to care in different environments and the needs of clinicians.

Two new editors join the team from Canada and South Africa, reflecting our aims to contribute towards the development of care for children across the world, and to be a resource for both experienced clinicians and those new to the field.

Comprehensive in scope, exhaustive in detail, and definitive in authority, this third 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. This includes two new chapters, looking in detail at 'Decision Making' and 'Perinatal Care', and a new section highlighting the emerging importance of 'Palliative Care for Children in Humanitarian Crises'. This book is an essential resource for anyone who works with children worldwide.