Preface | Oxford Textbook of Palliative Care for Children (Liben, Oxford Textbook of Palliative Care for Children)

Editors: Goldman, Ann; Hain, Richard; Liben, Stephen

Title: Oxford Textbook of Palliative Care for Children, 1st Edition

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Preface

Fortunately death in childhood is uncommon, but for those families who have to live with the knowledge of their child's impending death and confront the problems of caring for them throughout their illness, the emotional and practical burdens are great. For the health care workers too, dealing with the particular problems of the dying child and their family, as well as acknowledging their own sadness, can lead to considerable stress and anxiety.

It has taken many years for society, including healthcare workers, to acknowledge the problems of dying patients. Perhaps because death in childhood is uncommon, it is only now becoming clear that children with life-limiting conditions and their families have special needs that are often not recognized or met. The adult hospice movement, focusing on the care of those dying from cancer has been established since the 1960s but palliative care in paediatrics, with its broader approach, is newer and only began in the 1980s. Although this is partly related to the relatively small numbers involved it is also reflects the discomfort most of us feel when facing the certain death of a child.

In comparison with other aspects of paediatrics there is only a small research and literature base to palliative care. Although we can learn from the growing literature of the adult hospice movement the problems are not identical and children need to be considered in their own right.

The aim of this book is to gather together the best and most up-to-date information about current knowledge and clinical practice in paediatric palliative care, with contributions from many of the pioneers in the field from a wide variety of disciplines, around the world. We hope this will provide a practical and informative text, which will promote a model of care that is sufficiently flexible to address the complex and multifaceted needs of children with life-threatening illnesses and their families, across many countries and continents. The book focuses on children with chronic disease and thespecific issues of sudden infant death, accidental death and suicide are not included.

Every child and family facing death has their own unique, complex and varied problems. There can be no single right way of providing care. In this text we consider a wide range of issues including medical, psychological and practical aspects of caring for terminally ill children and their families and provide diverse resources from which we hope readers will be able to draw out what is useful to them, in their particular circumstances. The different authors have chosen to use a combination of approaches in the text reflecting both the differing needs of the topics and their own personal writing styles. We hope this approach will also meet the individual needs and preferences of the readers. However, some important common themes that reflect our underlying beliefs will thread throughout the book. These are:

the need for care to be child and family centred
the need for care to be flexible and individualized for each child and family
the need for care to be based on teamwork between the child, family, professional of all disciplines and non-professional carers.
the need for our practice to be reflective and evidence based as much as possible.

The book begins with a section we have called Foundations of care , in which the first two chapters give a background and overview of paediatric palliative care and the groups of children who may benefit from it. These are followed by discussions about communication and ethics, which are core issues at the centre of all aspects of our work.

In the second section, Child and family care , we have started with a chapter looking at society's perceptions of death in children. We then have a wide range of chapters looking at different aspects of psychological, social and spiritual care, both for the sick child, adolescent and also their family. We look at the ways children view death, the ways in which they express themselves and the roles of play and school. These chapters cover both the time course of the illness and also the time immediately following death and finally support for the family through bereavement.

In the fourth section we have brought together themes related to the Delivery of care . There are chapters relating to the practical issues involved in care in a range of different environments such as home care, children's hospices, hospital wards and intensive care units. We have also tried to look at the way children's palliative care is developing (or not yet happening) in some of the different countries around the world with their contrasting physical, geographic and financial environments. Teamwork, which is such an essential part of paediatric palliative care is explored as are the responses and needs of healthcare professionals working in this difficult field. The book ends with an eye towards the future examining quality assurance, education, training and research.

Symptom care is the focus of the third section in which a number of broad-based chapters cover symptom assessment, the use of medications and symptoms at the end of life. These are complemented by more specific and detailed exploration of individual symptoms and their management. We have encouraged the authors to take a holistic view and discuss both pharmacological and non-pharmacological approaches, and also to recognize the importance, especially to families, of including the role of complementary medicine.

We hope this book will be of help to paediatricians in particular but also to all those professionals and volunteers who may be involved in the care and management of a dying child. We hope it will help them to look after the children with skill and confidence, and work with and support the family so the children can die in peace and with dignity wherever they are cared for.

October, 2005

A.G.

R.H.

S.L.