CONTEMPORARY AND INNOVATIVE PRACTICE IN PALLIATIVE CARE Edited by Esther Chang and Amanda Johnson Contemporary and Innovative Practice in Palliative Care Edited by Esther Chang and Amanda Johnson Published by InTech Janeza Trdine 9, 51000 Rijeka, Croatia Copyright © 2012 InTech All chapters are Open Access distributed under the Creative Commons Attribution 3.0 license, which allows users to download, copy and build upon published articles even for commercial purposes, as long as the author and publisher are properly credited, which ensures maximum dissemination and a wider impact of our publications. After this work has been published by InTech, authors have the right to republish it, in whole or part, in any publication of which they are the author, and to make other personal use of the work. Any republication, referencing or personal use of the work must explicitly identify the original source. As for readers, this license allows users to download, copy and build upon published chapters even for commercial purposes, as long as the author and publisher are properly credited, which ensures maximum dissemination and a wider impact of our publications. Notice Statements and opinions expressed in the chapters are these of the individual contributors and not necessarily those of the editors or publisher. No responsibility is accepted for the accuracy of information contained in the published chapters. The publisher assumes no responsibility for any damage or injury to persons or property arising out of the use of any materials, instructions, methods or ideas contained in the book. Publishing Process Manager Martina Durovic Technical Editor Teodora Smiljanic Cover Designer InTech Design Team First published February, 2012 Printed in Croatia A free online edition of this book is available at www.intechopen.com Additional hard copies can be obtained from orders@intechweb.org Contemporary and Innovative Practice in Palliative Care, Edited by Esther Chang and Amanda Johnson p. cm. ISBN 978-953-307-986-8 Contents Preface IX Part 1 Contemporary Practice 1 Chapter 1 Cross-Cultural Issues in Academic Palliative Medicine 3 Mira Florea Chapter 2 Teaching Palliative Care in a Free Clinic: A Brazilian Experience 19 Thais Pinheiro, Pablo Blasco, Maria Auxiliadora Benedetto, Marcelo Levites, Auro Del Giglio and Cauê Monaco Chapter 3 Are Anxiety and Depressive Symptoms Related to Physical Symptoms? A Prospective Study of Patients with Advanced Chronic Disease 29 María Ignacia del Río, Alejandra Palma, Laura Tupper, Luis Villaroel, Pilar Bonati, María Margarita Reyes and Flavio Nervi Chapter 4 Designing for the Experience of Pain 39 Elizabeth Lewis Chapter 5 Predictors in Complicated Grief: Supporting Families in Palliative Care Dealing with Grief 59 Pilar Barreto-Martín, Marián Pérez-Marín and Patricia Yi Chapter 6 The Place of Volunteering in Palliative Care 83 Jacqueline H. Watts Part 2 Challenges in Practice 103 Chapter 7 Dilemmas in Palliation 105 Deepak Gupta Chapter 8 Breaking Bad News to Families of Dying Children: A Paediatrician’s Perspective 115 M. P. Dighe, M. Marathe, M. A. Muckaden and M. Manglani VI Contents Chapter 9 Palliative Care in the Muslim-Majority Countries: The Need for More and Better Care 137 Deena M. Aljawi and Joe B. Harford Chapter 10 Challenges in Advanced Dementia 151 Esther Chang and Amanda Johnson Chapter 11 The Changing Landscape – Palliative Care in the Heart Failure Patient Population 165 Michael Slawnych, Jessica Simon and Jonathan Howlett Part 3 Models of Care 183 Chapter 12 A Framework for Policy-Based Data Integration in Palliative Health Care 185 Benjamin Eze Chapter 13 Information Needs in Palliative Care: Patient and Family Perspectives 199 Yaël Tibi-Lévy and Martine Bungener Chapter 14 Palliative Care in Children 223 Huda Abu-Saad Huijer Chapter 15 Palliative Care and Terminal Care of Children 241 Luis Pereda Torales Chapter 16 Meeting the End of Life Needs of Older Adults with Intellectual Disabilities 255 Philip McCallion, Mary McCarron, Elizabeth Fahey-McCarthy and Kevin Connaire Chapter 17 Palliative Care for the Elderly: A Japanese Perspective 271 Yoshihisa Hirakawa Preface This book was developed to showcase the evolution of palliative care internationally in both developed and developing nations. It plays the vital role in alleviating suffering and promoting prosperity so that all people living to die had a quality life. With advances in medical sciences, more sophisticated technology and increased evidence-based practice, we can see a greater integration of palliative care into all diseases now as well as in the future. The commencement of palliation at any point along the disease trajectory and symptom management play an important role in achieving an enhanced quality of life. The chapters in this book highlight the multidimensional nature of palliative practice encompassing not only knowledge of the disease state, but an understanding of the role government policy, the economy, family, the interdisciplinary team, support services, existential issues such as spirituality contribute to the provision of optimal palliative care for all. The diversity of topics in this book is also a reflection of the multidimensional nature of palliative care. It represents the contributors vision of how palliative care should be implemented and what are the challenges for the future. This book has also been designed to provide comprehensive information on key contemporary issues associated with palliation. The reader will find viewpoints that are challenging and sometimes discerning, but at the same time motivating and thought-provoking in the care of people in palliation. This book is divided into three sections. Section 1 examines contemporary practice; Section 2 looks at the challenges in practice; Section 3 discusses the models of care. This contemporary and innovative book is scholar, accessible, reality based and practical. It is an excellent resource for students, practising clinicians and academics for understanding the issues of quality of care in the area of palliation. By reading the book, reflecting on the issues, challenges and opportunities ahead, we hope it will create within the reader a passion to take on, explore and further develop their palliative care practice. This will enable future generations of people requiring palliation to be the recipients of the best possible care available that meets their needs, when they are at their most vulnerable. It is also through this passion that clinical practice, research and teaching of future palliative care practitioners will be improved.We extend our sincere appreciation to the contributors for the work, shared interest and concern with the issues and challenges of palliation. This book would not be possible without them. Many thanks to Ana X Preface Pantar from InTech Open Access Publisher for inviting us to be editors of this book ; special appreciation to Martina Durovic for her encouragement and superb support during this whole process. Finally, we are indebted to our respective husbands, Ron Chang and Robert Johnson for their continuous patience, understanding and support while we worked on this project. Professor Esther Chang and Dr Amanda Johnson University of Western Sydney Australia . CONTEMPORARY AND INNOVATIVE PRACTICE IN PALLIATIVE CARE Edited by Esther Chang and Amanda Johnson Contemporary and Innovative Practice in Palliative Care Edited. spiritual care initiatives. Contemporary and Innovative Practice in Palliative Care 6 Our university’s undergraduate and postgraduate curriculum offer training in palliative care in a patient-centered. spiritual needs as part of the initial assessment and ongoing care Contemporary and Innovative Practice in Palliative Care 8 b. student perception of palliative medicine module c. student perception